HOME BASED CARE FOR CAREGIVERS
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Home Based Care
for Caregivers
Facilitator’s Guide
l-TECH
■1
INTERNATIONAL
TRAINING S.
EDUCATION
CENTER ON HIV
Project Concern
Inierndiional
Acknowledgements
The Home Based Care for Caregivers course has been developed to assist
caregivers and people living with HIV/AIDS to manage their illness at home. The
people and organizations that contributed to the completion of this curriculum are:
International Training and Education Center on HIV (l-TECH)
Liz Stevens, MSW, Project Manager, India
Izumi Yamamoto, MA, Project Manager, India
Anila Jacob, MA, Researcher/Curriculum Developer
Sara Teitelman, MPH, Curriculum Developer
G. Manoharan, MD, Senior Medical Advisor
Ann Downer, MS, EdD, Director
I-TECII
Project Concern International
Chinkholal Thangsing, Director, HIV/AIDS Programs
The clients and staff of PCI Salem, who graciously shared their stories and feedback
Portrait Advertising
Abrar Nari, Project Coordination, Layout, and Design
Samuel Rajapandian, Illustrator
V. K. Santosh, Illustrator
Arputharoy, Cover Illustrations and Design
Produced by:
The International Training and Education Center on HIV (l-TECH)
901 Boren Avenue, Suite 1100
Seattle, Washington, USA
Telephone: (206) 221-4944
Internet: http://www.go2itech.org
Email: info@go2itech.org
First Edition, July 2005
© 2005 University of Washington. All rights reserved. This text may be freely
reviewed, quoted, reproduced, or translated, in full or in part, for educational or other
non-commercial purposes provided the source is acknowledged. Commercial
reproduction or sale is prohibited.
Table of Contents
ABOUT THIS COURSE
2
SAMPLE COURSE SCHEDULE
5
SESSION 1A: INTRODUCTION TO HOME-BASED CARE
6
SESSION 1B: HIV BASICS
16
SESSION 2: PROBLEMS FACED BY PEOPLE LIVING WITH HIV/AIDS
27
SESSION 3: LIVING POSITIVELY WITH HIV/AIDS
36
SESSION 4: PREVENTION OF INFECTIONS IN THE HOME
49
SESSION 5: NUTRITION AND FOOD SAFETY
55
SESSIONS 6A THROUGH 6E: MANAGEMENT OF HIV/AIDS
64
SYMPTOMS AT HOME..........................................................
SESSION 7: CONDITIONS THAT NEED SPECIAL ATTENTION TB AND SEXUALLY TRANSMITTED DISEASES...................
92
SESSION 8: WOMEN AND HIV/AIDS
94
SESSION 9: CHILDREN AND HIV/AIDS
106
SESSION 10: CARE OF THE DYING AND THE DEAD
113
SESSION 11: DEMONSTRATION OF HOME-NURSING PROCEDURES
119
SESSION 12: HOW TO CHOOSE A DOCTOR
124
I
APPENDIX A: TIPS FOR FACILITATORS
APPENDIX B: HOME-BASED CARE COURSE EVALUATION FORM
VI
APPENDIX C: NEEDS ASSESSMENT QUESTIONNAIRE FOR
PERSONS LIVING WITH HIV/AIDS.............................. VIII
APPENDIX D; CRITERIA FOR NUTRITIONAL SUPPORT FORM
XIII
7'--'
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About this Course
Care and love come naturally to us and this is why we tend to help one another. This
is especially true when we know that others need our help. If these things come
naturally to us, then why is it important to go to a structured course? It is important
because HIV, with its complicated combination of infections, has brought new
challenges to caring for those who are ill. Training can help us to:
•
Learn new information on home-based remedies
•
Correct misunderstandings about HIV and AIDS
•
Take the right steps to help patients stay healthy
•
Identify and manage common AIDS-related health problems in our homes
•
Alleviate pain and discomfort - both physical and mental
Now we all know that HIV, if managed properly, can be less damaging than it used to
be. It requires the physical and emotional support of close relatives and the
community as well as quality medical care. Sometimes we come across welleducated and socially conscious people who are ignorant about the basic
transmission and spread of HIV. Sometimes we find that traditional and professional
caregivers consciously or unconsciously avoid situations when their presence and
closeness is crucial.
Communities that have been hard hit by HIV/AIDS need to be supported in their
response to the crisis. Families and community groups (like self-help groups or youth
forums) that are caring for people living with HIV infection, orphans, and other
vulnerable people often need basic information on HIV/AIDS to keep themselves
safe and to help those who are HIV-positive stay healthy and emotionally positive for
as long as possible. Attending training programmes will give such people the right
information and teach the right methods to care for themselves or someone else with
HIV/AIDS.
Course Description
This course is based on the information presented in the “Home-Based Care
Caregiver’s Handbook.” It is designed to provide a broad overview of the various
aspects of home-based care and cover the importance of home-based care practices
in Indian community settings. While not comprehensive, this course, along with the
corresponding handbook, should provide participants with the necessary tools for
caring for people with HIV/AIDS in their homes and communities.
Intended Audience
This course is appropriate for anyone that is responsible for providing home-based
care or health education to individuals and families living with or affected by
HIV/AIDS. These persons may include:
• Family members or friends of someone who is HIV-positive
• Community volunteers
• People living with HIV/AIDS
• Community health workers and counsellors
Course Organisation
This course is divided into 12 sessions, with each session covering a different aspect
of home-based care (HBC). This course may be presented in its entirety or as
individual sessions, depending on the needs of the intended audience and the time
available.
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The sessions are organised as follows:
Session
Title
Contents
1A
Introduction to Home-Based
Care
Importance of home-based care and the
reasons for providing home-based care.
1B
HIV Basics
Facts and myths about HIV and AIDS.
2
Problems Faced by People
Living with HIV/AIDS
Psychological and social problems faced
by people living with HIV.
3
Living Positively with
HIV/AIDS
How a person living with HIV can live a
long and healthy life by making important
changes in his or her lifestyle.
4
Prevention of Infections in the
Home
Good hygiene and ways of preventing
the spread of HIV and other infections
among family members and people with
HIV.
5
Nutrition and Food Safety
Importance of nutrition in managing
HIV/AIDS. A sample menu that can be
adapted according to regional tastes is
included.
6
Management of HIV/AIDS
Symptoms at Home
Common symptoms associated with HIV
infection and their management at home.
7
Conditions that Need Special
Attention: TB and STIs
Symptoms and precautions for
tuberculosis and sexually transmitted
infections, conditions commonly found in
those who are HIV-positive.
8
Women and HIV/AIDS
Special considerations for women living
with HIV infection.
9
Children and HIV/AIDS
Special considerations for children that
are infected with HIV as well as affected
by HIV.
10
Care of the Dying and the
Dead
Considerations and precautions to be
taken when caring for someone during
the final stages of HIV-related illness as
well as after their death.
11
Demonstration of HomeNursing Procedures
Practical skills needed to care for a
person who has HIV infection.
12
How to Choose a Doctor
How to choose a doctor for someone
with HIV and what you should know
before the doctor’s visit.
Training Methods
The methods of instruction for this course have been kept simple and pictures and
photographs have been used to illustrate each idea. This type of design was chosen
to best accommodate participants who may be illiterate or have a low literacy level.
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Discussions based on participants’ experiences will be important in all of the
sessions and will ensure that the learning process is participatory. Participants will
also have the opportunity to practise the techniques being demonstrated during the
course of the training, as this is a more effective way of learning than simply listening
or seeing.
The training programme could be presented in its entirety as a four-day continuous
programme or it could be broken up and presented as individual modules according
to participant needs and time available.
Course Materials
The following materials will be needed to conduct this course:
• Laptop or desktop computer with Microsoft PowerPoint presentation software
• LCD Projector (connects to a computer to project the images that are on the
computer screen)
• Projection screen or a white surface large enough for everyone to see
• Blackboard and chalk or white board and markers
Additional materials specific to each session will be listed at the beginning of that
session's description.
Course Evaluation
It is important to ask for feedback from the course participants about the course so
that the facilitator can be sure that the course is meeting everyone’s needs. This is
best to do at the end of the course so that people can give their opinions about what
they have experienced. The facilitator can then use the information they have been
given to improve on or make changes to the course the next time it is given. The
Home-Based Care Course Evaluation Form, at the back of this guide (Appendix B),
is to be used for this purpose. If participants are not able to fill out this form
themselves, you may want to ask the questions that are on the form out loud and
then write down the answers from the participants for your records.
Additional Materials
The following additional materials are included at the back of this guide to help you in
your practice both as a course facilitator and/or caregiver:
•
Appendix A: Communication Tips for Trainers
•
Appendix B: Home-Based Care Course Evaluation Form
•
Appendix C: Needs-Assessment Questionnaire for Persons Living with
HIV/AIDS
•
Appendix D: Criteria for Nutritional Support Form
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Sample Course Schedule
While session times and order may vary depending on the needs of each group, the
following is a suggested schedule that may be modified as needed:
Sample Four-Day Home-Based Care and Support Training
Morning
Session
A
Day One
Day Two
Day Three
Day Four
1A: Introduction
to Home-Based
Care
3: Living
Positively with
HIV/AIDS
6: Management
of HIV/AIDS
Symptoms at
Home
9: Children and
HIV
1B: HIV Basics
4: Prevention
of Infections in
the Home
7: Conditions
that Need
Special
Attention: TB
and STIs
10: Care of the
Dying and the
Dead
12: How to
Choose a
Doctor
5: Nutrition and
Food Safety
8: Women and
HIV
11:
Demonstration
of HomeNursing
Procedures
2: Problems
Faced by
People Living
with HIV/AIDS
5: Nutrition and
Food Safety
(cont'd)
8: Women and
HIV (cont’d)
11: Home
Nursing (cont’d)
Break
15 min.
Morning
Session
B
Lunch
1 hour
Afternoon
Session
A
Break
15 min.
Afternoon
Session
B
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'
Session 1A: introduction to Home-Based Care
Time 1 hour 15 minutes
Aim
The aim of this session is to introduce participants on basic of home-based care so
that they understand the need to look after family members with HIV at home.
Learning Objectives
By the end of the session, participants will know:
• The meaning of home-based care
• The importance of home-based care
• The importance of family members in home-based care
• Problems faced by caregivers and how to deal with them
• How to take care of a person with HIV/AIDS
• That the caregiver can attend to other responsibilities if the patient is at home
• That the patient doesn’t have to travel long distances to seek care at a
hospital
Session Activities
Activity
Time
(minutes)
Content
Materials
Slide(s)
1
15
Icebreaker Exercise
Folded slips of paper with
pictures of different
flowers, colours, animals
N/A
2
45
Group Discussion:
Importance of HBC
3
90
Brainstorming:
Burnout in Caregivers
3-6
Worksheet 1.1: Needsassessment form
7-9
White- or blackboard,
markers/chalk
Note: If possible, give the
assessment form to
participants prior to the
session so that it can be
filled out ahead of time
and discussed during the
session.
The following materials for this session are included at the end of this chapter:
Reference Material:
»
Home-Based Care.
Participant Handouts:
•
1.1 Needs-assessment questionnaire for persons living with HIV/AIDS
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Key Points
•
A caregiver is a person who takes care of someone who is not well
•
Home-based care is care given to sick people in their own homes instead of
in a hospital
•
Care includes physical, emotional, spiritual, and social aspects
•
Many illnesses and infections associated with HIV and AIDS can be managed
at home if we know some basic information
•
Home care is less expensive
•
Caregivers, especially women, will have additional duties at home, which will
cause stress
•
Caregivers should look after themselves and be in the company of friends to
avoid stress
•
Caregivers should have a basic knowledge of HIV/AIDS and the problems
caused by it and learn how to manage it
•
Caregivers should be kind, patient, and considerate
Activity 1: Icebreaker Exercise (15 minutes)
Topic: Warming up and getting to know the participants
Instructions: Since this is the first session, the participants may not feel very
comfortable being with others. To warm them up you can use an icebreaker exercise
that will introduce them to each other.
1. Be ready with folded slips of paper with pictures of different flowers, colours,
animals, etc. (1 per participant). Make them so that there is a set of 2 identical
slips for each picture (i.e. 2 with a flower, 2 with a cat).
2.
Introduce yourself as the facilitator, then tell them that they will be playing a
game.
3. Ask each of them to pick up 1 folded slip of paper.
4. Ask each attendee to find the other person in the audience who has the same
picture on their slip of paper.
5.
Ask them to find out as much information as they can about each other in the
given time (2 minutes), e.g. favourite food, favourite colour, favourite animal,
etc.
6. After the given time, ask them to introduce each other to the group based on
the information they have collected.
This exercise should make the participants feel more comfortable with each other
and as a group. To make the sessions lively and meaningful, the participants should
also understand the importance of taking part in discussions, asking questions, and
learning from each others experiences. Once you are satisfied that everyone has
had a chance to speak, continue with the session.
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Activity 2: Group Discussion (45 minutes)
Topic: Importance of HBC
Instructions: Encourage comments and discussion among participants regarding
the following questions:
Questions:
•
Who do you know that is ill with HIV/AIDS?
•
Do you know how to take care of them?
•
Do you go to the hospital or health-care provider or to traditional healers
when the person is ill?
•
What happens to the individual and his or her family when someone falls ill
with a chronic or long-term illness?
•
Would you prefer to have the person who is ill admitted to the hospital or
have him or her stay at home? Why?
•
What are the caring needs at home for individuals with long-term chronic
illness?
You should fill in information whenever it is necessary. Be sure to cover the key
points.
Activity 3: Brainstorming - Group Activity (45 minutes)
Topic: Burnout in caregivers
In this exercise the difficulties faced by caregivers should be acknowledged and
discussed.
Instructions:
•
Ask participants to brainstorm on the question “What do you do when you feel
burdened or stressed out?”
•
Encourage participants to suggest ways to cope with stress. Their answers
should be written down for all to see. The facilitator(s) can also add their
suggestions.
•
Ask participants to fill in the Needs-Assessment Form if they have not already
done so. Participants may need assistance. This form will give you a good
idea about their needs, which will help in deciding the topics of importance for
the remainder of the course.
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Reference Material
Home-based Care
What is home-based Care?
Home based care means any form of care given to sick people in their own homes
instead of in a hospital.
It can mean the things people might do to take care of themselves or the care given
by the family members, health-care workers, or other providers of care. Home-based
care includes physical, emotional, spiritual, and social aspects.
Why home-based care?
Many illnesses and infections associated with HIV and AIDS can be managed at
home if we have some basic information. Home care is less expensive and can be
given with compassion and dignity in a familiar environment rather than in a hospital.
A caregiver (spouse, parents, children, neighbour, health worker, or a friend) can
attend to other responsibilities if the patient is at home.
The patient doesn’t have to travel long distances to seek care at a hospital.
Importance of the family in home-based care
Family members are often the best people to:
•
Give emotional support, love and care
•
Help with daily chores in times of sickness
•
Help make plans for the future
•
Share some of the financial burden
•
Help prevent further HIV transmission
Who is a caregiver?
A caregiver is a person who takes care of someone who is not well. In India, in most
households it is a family member who takes care of the HIV-infected person. It may
be a wife, a mother, a grandmother, or a peer educator, but in some cases it can also
be a husband, father, or grandfather. Anyone can be a caregiver!
Problems faced by caregivers
When an HIV-infected woman is the caregiver, often she is caring for her HIVinfected husband or children. The burden of looking after her sick husband, doing
the household chores, and taking care of the children is tremendous. She may not
have a proper source of income, if the breadwinner is unable to work. Fear of her
husband's death and worry about the future of her children may add to her distress.
Also, there is often no one available to care for her should she become ill. All these
factors can contribute to her stress.
Symptoms of stress
•
Crying
•
Worry or anxiety
•
Short temper
•
Feeling exhausted
•
Lack of interest in things
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How to deal with stress?
•
Talk to friends who care for you
•
Participate in activities outside the home whenever possible
•
Contact community-based AIDS organizations and meet other people like you
with whom you can share your problems
•
If possible, be a peer educator (if you are HIV+) to help others and earn a
living
•
Have some hobbies like stitching, gardening, etc.
•
Be positive
•
Eat well
•
Guard your health
What a caregiver should know
There are certain things a caregiver should know while taking care of a person who
is ill with HIV:
•
Basic knowledge of HIV and AIDS
•
Personal and environmental hygiene
•
Prevention of infections and injuries to themselves and others
•
Management of infections at home
•
Nutrition
•
Whom to call for help or information
•
Information about medicines to be taken by the patient and their possible side
effects
All of these things can be learned by contacting community-based organizations
dealing with AIDS or a community health worker.
Along with the above, a caregiver should be kind and patient with the ill person.
Though it is difficult, spouses should forgive their partners and look after them with
love and affection. They should do away with anger towards the affected person and
give them emotional support. To some extent this, along with medication and good
nutrition, will help the ill person to recover faster.
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fejii Participant Handout
1.1 Needs Assessment of Persons Living with HIV/AIDS
(Adapted from CARE/MYANMAR)
Explanation for home-based care staff
A Person Living with HIV/AIDS means a person infected with HIV/AIDS. Close family
members e.g., the spouse, parents, children and others might also be HIV- positive
and living with HIV/AIDS.
This questionnaire can be used in interviewing:
•
People living with HIV/AIDS who show no symptoms yet
•
People living with HIV/AIDS whose general health condition is declining
•
Family members who are living in the same household
•
The family of a person who died of HIV/AIDS
If the HBC staff member knows the person with HIV infection personally, then he or
she can interview them directly.
Counselling trainees or other staff may also interview people with HIV/AIDS.
Whoever conducts the interview should be careful not to breach confidentiality by
letting others know that the person has HIV/AIDS and not to stigmatise people with
HIV infection.
The purpose of this questionnaire is not to find out which or how many people have
HIV/AIDS but rather to find out about the needs of people living with HIV/AIDS.
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Needs-Assessment Questionnaire for Persons Living with HIV/AIDS
*lt is not necessary to note the name or the family of the person living with HIV/AIDS in
this interview form.
Date of interview:
Place:
Village(s)/community covered by the HBC programme:
Name of the Interviewer:
Interviewer's Designation/Occupation:
The following questions are structured in order to find out the needs of persons living
with HIV/AIDS (abbreviated as PLHA). Either the PLHA or a close family member
can respond to the questions.
Please answer with a check [V] each relevant answer in the given space or write
down the answer wherever necessary.
Diagnosis:
How do you know that the person you are interviewing is living with HIV/AIDS?
Blood test
[J
Doctor’s diagnosis
[]
Clinical signs
[]
Other means
[]
1. Respondent’s data:
PLHA’s personal data:
If interviewing a family member, also fill in
personal data for the family member:
Age
Age
Sex
[]M
Transgender
[]Yes
Single
[]F
Sex
[]M []F
[]No
Single
[]Yes []No
[ ]Yes
[ ]No
Married
[]Yes
[]No
Married
[]Yes
[]No
Widow/Widower
[]Yes
[]No
Widow/Widower
[]Yes
[]No
Divorced
[]Yes []No
Divorced
[ ]Yes
[ ]No
Separated
[JYes
Separated
[]Yes
[]No
Urban or Rural
[JUrban [JRural
Urban or Rural
[JUrban [JRural
HBC Facilitator’s Guide
[]No
Relationship to
PLHA
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[JYes
[JYes
[JNo
[JNo
[]Yes
[]No
[]Yes
[JNo
7. Is your income enough for a living?
[]Yes
[]No
8. Are your savings enough for a living?
[JYes
[JNo
9. Do other family members support your living?
[JYes
[JNo
10. Do you have financial problems and
a shortage of money?
[JYes
[JNo
11. Have you suffered from any chronic and/or
serious illness before?
[JYes
[JNo
2. Did you have your blood tested?
3. Do your family members know about the result?
4. With whom do you (the PLHA) live?
5. Do you have a job now?
If yes, what is the job?
If no, did you have a job before?
If yes, what was the job before?
6. If you stopped working, what was the
reason?
If yes, what was it?
12. Did you seek consultation at the hospital/clinic before? (tick off as relevant)
[ JNo consultation at all
[ JConsultation to a general practitioner
[ JHospitalisation once
[ JHospitalisation several times
13. If you consulted a general practitioner, what was the reason?
[ JPrefer to go to the general practitioner rather than other health providers
[ JCIinics/ hospitals were not willing to treat PLHA
[ JAny other reason/s:
14. What are your present health needs? (tick off all relevant answers)
[ JOral multivitamins
[ Jlnjection or infusion of vitamins and other supplements
[ JGetting enough rest
[ JTreatment in hospital
[ Jlndigenous medicines
[ JBetter nutrition/food
[ JTablets (medicines) to relieve suffering
[ Jlnjections to relieve suffering
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15. What is necessary in order to fulfill these needs? (tick all that apply)
[ JMoney
[ Jlndigenous medicine
[ JWestem medicine
[ JDoctor who can take care of you
[ JHospital that can take care of you
[ JFamily member who can take care of you
[ JKnowledge about healthy living, nutrition and care
Give reasons for your choices above (Why is it necessary?)
16. Where do you prefer to stay when you are ill?
[JAthome. Why?
[ ]ln hospital. Why?
17. Do family members take care of you while you are ill?
[ JThey do
[ JThey don’t
[ JThey want to, but they need training or are unable for other reasons:
18. Which of these activities do you enjoy? (tick all that apply)
[ JWatching movies
[ JReading books
[ JKeeping busy with religious matters
[ jHaving a conversation with a close friend
[ JListening to/singing songs
[ JShopping
[ jHaving sex
[ ]Drinking alcohol
[ JTaking drugs
[ JDoing physical exercise/watching sports
[ JKeeping pets
[ ]Visiting/being out with friends
19. In order for you to do the activities above, what is needed? (tick all that apply)
[ JKnowledge
[ JMoney
[ JFriends
[ JGood health
[ JTime
[ jOthers, please specify:
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20. If you have a friend who has knowledge about HIV/AIDS and is someone you
trust and who is faithful to you, will you disclose your problem to him or her?
(]Yes. Why?
[ No. Why?
21. Where do you prefer to be cared for when you are ill?
[ JHospital
[ JCIinic
[ JStay at home and get help from the family
22. If you are cared for at home what do you need help with? (tick all that apply)
[ ]Washing and other personal hygiene
[ JEating
[ JTaking care of the children
(JOther, please specify:
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Session 1B: HIV Basics
Time: 1 hour 30 minutes
Aim
This session will teach people living with HIV, their caregivers, and peer
educators about the basics of HIV/AIDS. Illustrations and pictures will be used to
give them the correct information.
Learning objectives
By the end of the session participants will be able to:
•
Explain the facts about HIV/AIDS
•
Dispel myths about HIV transmission
•
Understand the basics of HIV treatment
Session Activities
Activity
Time
(minutes)
Content
Materials
Slide(s)
1
20
Group Game:
Bright shirt or shawl to put on
a person who will represent
HIV
4-8
Role of the
immune system
and the difference
between HIV and
AIDS.
2
25
Group
Discussion:
Phases and
symptoms of
HIV/AIDS.
Treatment of
HIV/AIDS and its
side effects
Flash cards with HIV/AIDS
information / Slides
Flannel board if slides cannot
be shown
9-14
3
30
Small Group
Discussion: HIV
Transmission
Flash cards depicting
illustrations of how HIV is
and is not transmitted
15-19
Flip chart/white board with
markers
The following materials for this session are included at the end of this
chapter:
Reference Materials:
•
Overview of HIV/AIDS
•
HIV Transmission
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Key points:
•
When someone is HIV-positive, it means the person has the human
immunodeficiency virus in his or her body or blood, but it does not
necessarily mean they are sick.
•
A person with HIV develops AIDS when the immune system gets
weakened enough for illnesses to occur.
•
A person with HIV may look and feel healthy for many years but he or she
can pass on the virus to another person.
•
HIV / AIDS is not a curable disease, but a chronic, manageable disease.
•
Once a person starts taking ART it should be taken throughout the
person’s life or it will have no effect.
•
If anything unusual is noticed after starting ART, the doctor should be
immediately contacted.
•
"Safe Sex” should be practised at all times.
•
Condoms should always be used, even if both partners are HIV-positive.
Activity 1: Group game on HIV and the immune system (20 minutes)
Topic: Role of the immune system and the difference between HIV and AIDS.
Instructions:
1. Choose one person from the group to represent a healthy body.
2. Choose a healthy looking person to represent HIV (if possible put
something bright on him or her - a red shirt or red shawl).
3. Choose 6 or 7 other participants to be “soldiers" (white blood cells or
WBCs).
4. Let the rest be the various illnesses - give them each a name of an illness
(e.g., TB, diarrhoea, STI, etc.).
5. Let the healthy body be surrounded by the soldiers. Let the illnesses
surround the soldiers. Let the HIV stand outside this circle.
6. When you shout "Go!”, the HIV person should penetrate the outer circle
and touch a few of the soldiers. Then, the illnesses should try to get past
the soldiers to the healthy body. Eventually, the illnesses will overpower
the soldiers and surround the healthy body.
7. Be careful and see that the game does not become rough.
8. You can do this exercise separately for male and female participants if the
women are reluctant to join the men.
When the exercise is finished, the facilitator should ask the following questions:
Question #1: What does the person (you can mention name of the person)
inside the group represent?
Answer: The human body.
Question tt-2'. What do the people (soldiers) surrounding him represent?
Answer: The immune system.
Question #3: What do the people surrounding the immune system represent?
Answer: Various illnesses ready to attack the body
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Question #4: What does the man or woman in red represent?
Answer: The Human Immunodeficiency Virus (HIV)
Question #5: Does HIV kill?
Answer: No! HIV weakens the immune system and lets the illnesses attack the
body. The diseases kill a person. HIV itself does not kill a person.
Summarise: HIV has killed the immune system. This lack of an immune system
makes it possible for many common diseases like tuberculosis, diarrhoea, and
others to attack a person’s body simultaneously. Gradually, all of these diseases
come together to cause a person’s death rather than just making the person ill.
This is called AIDS.
After the game is over, ask questions about HIV and AIDS. Make sure
participants have clearly understood the difference between HIV and AIDS.
Activity 2: Group Discussion (25 minutes)
Topic: Phases and symptoms of HIV/AIDS and treatment of HIV/AIDS and its
side effects.
Instructions:
This part of the session involves the trainer teaching the participants with the help
of the slides provided. If slides cannot be shown, illustrations can be prepared
beforehand and stuck on a flannel board.
•
Ask the participants questions about each slide to make sure they
understand what is being presented. Participants should also be
encouraged to ask questions. Try to get as many of the participants as
possible to talk.
•
Explain the various stages of HIV/AIDS by comparing an HIV infected
person with a healthy tree (one familiar to them, e.g. a coconut tree)
infected with termites.
•
Since the caregivers should already be familiar with some symptoms of
HIV/AIDS, the trainer can ask them questions such as:
1) What are the symptoms of HIV/AIDS that you have come
across?
2) Do you think there is a cure for HIV/AIDS?
3) Are HIV drugs easily available at the medical shops?
Questions 2 and 3 are ways of gauging their knowledge of the disease.
Activity 3: Group Discussion (30 minutes)
Topic: HIV Transmission
Instructions:
•
Divide the participants into groups of 3 or 4 depending on the number of
participants. Each group should choose a spokesperson.
•
Be ready with a set of flash cards with illustrations of "Ways in which HIV
is transmitted” and “Ways in which HIV is not transmitted."
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June 2005
r
•
•
•
Show each group a card for 30 seconds and ask if HIV can be transmitted
this way.
The spokesperson should answer and should also be able to explain why.
If the group does not answer correctly, you should not answer. The other
groups should be encouraged to give the correct answer.
The answers should be recorded by the facilitator for all to see
(whiteboard or blackboard). These answers can be reviewed later.
Session Summary (15 minutes)
You can now wind up by asking the participants if they have any questions. You
can also ask them questions such as:
1) What was good about this session?
2) What did you learn from the presentation?
3) Was this information enough?
4) What are your suggestions for the training?
Be sure to record people s answers - these suggestions can be help improve
future sessions.
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Reference Material
Overview of HIV and AIDS
Immediately after a person has learned that they have HIV infection or AIDS, they
and their family will probably want to know exactly what AIDS is and how to
prevent HIV transmission in the home. They will also need help in dealing with
the emotional shock of the diagnosis and what they can do to protect their own
health and that of their friends and family.
As the disease progresses and people have had time to understand and accept
the situation, they will probably become more interested in the specific physical
and emotional symptoms that they will experience. Later, as the sick person
moves into the chronic and, finally, the terminal stages of AIDS, they may
become more interested in practical concerns such as making preparations for
the care of children, or the settling of finances, as well as in the spiritual and
emotional preparation for dying.
The infected person and the family members may want to know things like:
•
What HIV and AIDS are
•
How HIV is transmitted (and how it is not transmitted)
•
How to find out if a person is infected with HIV
•
What problems or symptoms are commonly associated with AIDS
•
How to recognise and take care of common emotional and physical
problems caused by HIV infection and AIDS
•
When it is important to seek additional help and where to go for help
•
Where to go for counselling
•
How to lead as normal and satisfying a life as possible
•
What they can do to prevent the transmission of HIV
•
That there may be stigma associated with HIV infection and AIDS
•
What their legal and human rights are
•
How to protect caregivers from infection
•
That caregivers have emotional needs
What is HIV?
HIV stands for:
•
Human - it affects only human beings
•
Immunodeficiency - it is a condition in which the immune system is weak
and not working, and the body cannot fight disease germs
•
Virus - an organism that causes infection
HIV is the name of a virus. When it enters the body, it infects and kills the cells
that fight disease germs. When someone is HIV-positive, it means that the virus
is present in his or her body and blood. In some people, the virus remains
dormant (inactive) for years without causing AIDS. Even if there are no
symptoms, the person can still spread the virus.
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What is AIDS?
AIDS stands for:
•
Acquired - you get it from someone else: it could be your spouse or
sexual partner; or from an HIV-infected mother to her child during
pregnancy, delivery or breastfeeding; or you could get it from infected
blood or blood products.
•
Immune - it affects the immune system, the cells of your body that fight
disease.
•
Deficiency -a problem in the immune system or in the body’s ability to
fight infections.
•
Syndrome - not just a single illness, but many different symptoms and
infections that develop because the immune system cannot fight off
common bacteria and other infections.
Once the virus enters the body, it starts attacking the immune system. As time
goes by, the body becomes too weak to fight infections and diseases. This leads
to serious illnesses and infections. When this happens, HIV infection becomes
AIDS.
** Please note that the difference between HIV and AIDS is that HIV is the name
of a virus and AIDS is the name of a condition when a person with HIV suffers
from one or more serious illnesses or infections.
Many of the germs that cause these illnesses are quite harmless to people who
have a normal immune system. But if the body’s immune system has been
damaged by HIV, these germs can cause life-threatening illnesses.
How does HIV affect the body’s immune system?
The immune system
White Blood Cells (WBCs) are a very important part of what is called the immune
system. The immune system, with its WBCs, defends the body from infections. It
recognises bacteria, viruses, and other organisms that are foreign or dangerous
to the body and attacks them. White blood cells can be compared to soldiers in a
country. The soldiers are always on the watch for enemies and they defend the
country the moment they sense an enemy presence..
Weakening the immune system
When a person becomes infected with HIV, the virus begins to live and reproduce
in the WBCs, multiplying until there are millions of viruses present. The virus
gradually damages the WBCs so that they can no longer do their job of protecting
the body from other kinds of infections, which healthy people without HIV can
normally fight off without any problem. It is when these infections occur that a
person is said to have AIDS.
The bacteria, viruses, and parasites present in the environment that cause these
infections take the opportunity given by the weakened immune system to grow.
This is why many of the illness that people with AIDS get are called Opportunistic
Infections (Ols). Common conditions, such as tuberculosis or cancer, can also
take advantage of the weakened immune system.
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What happens in HIV infection?
A person who becomes infected with HIV will usually go through various clinical
stages that occur over a long period of time, i.e., 5 -to 15 years, depending on
the lifestyle circumstances.
The following stages typically occur with the patient who does not receive
appropriate treatment:
•
Being well with no symptoms or disease
•
Having mild disease episodes
•
Having severe illness
•
Dying from severe illness
Early HIV infection
In the first 4 to 8 weeks after HIV infection there may be a short, i.e., 1 to 2
weeks, illness that causes the following:
•
High temperature
•
Tiredness
•
Rash
•
Sore throat
•
Muscle and joint pains
•
Some swelling of the lymph glands
Clinically latent or “silent” phase
The HIV-infected person usually experiences a period of good health in which the
virus remains clinically silent. This phase may last between 3 and 10 years
depending on a person's lifestyle and other factors. The person can spread the
virus during this phase.
Minor HIV-related symptoms
Between 3 and 10 years after infection, some people may develop minor
symptoms and signs secondary to the HIV infection. These may include the
following:
•
Chronic swelling of the lymph nodes in the neck, axilla, and below the jaw
•
Herpes Zoster
•
Occasional fever
•
Skin rashes
•
Fungal mouth infection
•
Recurrent mouth ulceration
•
Recurrent upper-respiratory-tract infection
•
Weight loss
HIV-related diseases - the symptoms phase
After about 5 to 8 years following HIV infection, if appropriate treatment isn’t
received, the immune system continues to deteriorate and become immunedeficient, meaning that the body loses its power to fight infections. This is the
later stage of HIV, which occurs after the body's immune system has been
severely damaged. At this stage, the body is left with little or no resistance to
infection. In AIDS patients, common infections are usually more severe and
prolonged, and the patient does not always respond readily to treatment. Signs of
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more severe HIV-related diseases begin to appear The most common signs and
symptoms of this stage of HIV - related diseases are as follows:
•
Oral or vaginal thrush
•
Hairy leukoplakia on the tongue
•
Recurrent cold sores or genital herpes infection
•
Herpes Zoster
•
Acne-like bacterial skin infection
•
Persistent fever and night sweats
•
Skin rash
•
Generalised lymphadenopathy
•
Persistent diarrhoea
•
Reactivation of tuberculosis
Severe HIV-related symptoms
The symptomatic phase usually progresses over the next year or 18 months into
the fully developed AIDS phase of the disease. Signs and symptoms of AIDS
may differ from one patient to another depending on which system is affected, but
may include any combination of the following:
•
A Variety of skin rashes and skin conditionsv
•
Persistent cough, chest pain, and fever
•
Oral and / or genital thrush
•
Infection of the bowel presenting with ongoing diarrhoea
•
Infection of the brain presenting with headache, fits, and other
neurological conditions
•
Cancer such as Kaposi’s Sarcoma
•
Severe tiredness, fatigue, and weakness
•
Memory and concentration loss
HIV/AIDS is a variable disease
•
Some patients progress rapidly and others slowly
•
Some patients may suddenly deteriorate and progress very rapidly to
severe illness and death
•
Some may have a slow and gentle decline
•
Some may remain very well for several years and then suddenly
deteriorate
•
Some may never get ill
•
Some may get repeated opportunistic infections with many different
conditions
•
Some may suffer from a few of the opportunistic illnesses
•
Some patients can get reasonably well after being very sick
•
Others may get very sick after being reasonably well
Is there a treatment or cure for HIV infection or AIDS?
Currently, there is no cure for HIV infection or AIDS. However, medicines are
now available that are very effective in controlling HIV in the body. The use of the
new antiretroviral drugs as well as drugs to prevent opportunistic infections
delays the progression of HIV infection to AIDS. Thus, people with HIV infection
can lead long and healthy lives.
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What is HIV antiretroviral drug treatment?
Antiretroviral (ARV) drug treatment is the main type of treatment for HIV or AIDS.
It is not a cure, but it can stop people from becoming ill for many years. The
treatment consists of a combination of drugs that have to be taken every day for
the rest of the HIV-positive person’s life. These drugs slow down the growth of
HIV in the body and stop the virus from weakening the immune system. If taken
as recommended, they can help the person with HIV to lead a longer and
healthier life.
When does treatment start?
After the doctor has made a detailed study of the patient’s past and present
medical history, it will be decided whether the patient requires antiretroviral
therapy (ART). The decision will be based on identification of current and past
HIV-related illnesses, identification of other medical conditions that might
influence the timing and choice of ART, and current symptoms and physical signs
of other medical conditions, such as TB or pregnancy. It also depends on the
CD4 count of the person.
What is a CD4 cell count?
A CD4 test measures the number of CD4 cells in a person's blood. The more
CD4 cells there are per cubic millimetre of blood, the stronger the immune
system is. The stronger the immune system is, the better the body can fight
illnesses. When the number of CD4 cells infected with HIV increases, more CD4
cells are destroyed. When a HIV positive person’s CD4 count gets to 200 or
lower, he or she is at risk of developing opportunistic infections, which can be life
threatening.
Which drugs should be used?
Zidovudine or Lamivudine and Stavudine or Lamivudine along with Nevirapine
and Efavirenz are the drugs used in ART. A combination of three of these drugs
as determined by a physician will be used in HIV treatment.
‘Each antiretroviral drug has side effects. Some side effects are mild and some
are serious. Some combinations of drugs are easier to tolerate than others, and
some seem to work better than others. Each person is different, and the patient
and the doctor will have to decide which drugs to use.
Adherence
Adherence means taking the medications correctly. In order for the medications
to work, it is very important to take them according to the instructions. Otherwise,
the drugs will not have any effect on the virus. If the effect of one drug is lost on
the virus, the effects of other drugs might also be lost. One of the most important
things to think about before beginning treatment for HIV is the ability to take the
treatments properly. As far as we know, anti-HIV medicine has to be taken for
life. Not taking the medicine properly can lead to treatment failure.
Different drugs have different rules - some drugs may be taken only once a day,
while other drugs must be taken two or three times a day. Some drugs must be
taken on an empty stomach, while others must be taken with a high-fat meal.
Because the patient will probably be taking several different medications, each
drug will have different rules. It's important to know which rule goes with which
drug.
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Tips for caregivers/HIV patients:
It can be difficult to take your medications the way you're supposed to. Make it as
easy as you can!
•
Tell your doctor about your daily schedule so that you can choose the
medications that will be easiest for you to take.
•
Make sure you understand these things about your medications:
1) Which medications to take
2)
How many tablets to take and how many times a day
3)
Whether to take your tablets with food or on an empty stomach
4) How to store your pills
5) Side effects you might have and what to do about them
•
Plan ahead so you don't run out of any of your medications.
•
Set a timer or alarm to go off when you have to take pills.
•
Choose a regular daily activity to help you remember to take pills:
1) Making/drinking your morning coffee
2) Getting out of bed
3)
A favourite radio programme
4)
Coming home from work
Make sure your family members know how important it is for you to take your pills.
Ask them to help you remember. You can also get help from peer educators or
support groups to monitor your medications.
Common side-effects of ARV drugs
Most people taking anti-HIV medications have some side effects like headaches, or a
general sense of feeling ill. These usually improve or disappear over time as your
body adjusts to the drugs. Common side effects are:
•
Fatigue
•
Nausea and vomiting
•
Anaemia
•
Diarrhoea
•
Skin rashes
(Management of these problems is given in Section 6 of this manual)
You might have problems with side effects, or it might be difficult to take your
medicines as prescribed. Don’t cut back or stop taking your medications until you
have talked to your doctor. You might be able to change your medications and get
some that are easier for you to take. Remember:
»
Drugs do not cure HIV disease, but convert it into a manageable chronic
ailment
»
Drug treatment has to be taken life long
•
Drug treatment improves the longevity and quality of life
•
Patients remain infective and must practice safe sex even while on ARV
treatment
•
Drug treatment should be taken only from certified practitioners
■»
Drugs should be taken according to prescription only
•
Drugs should not be shared with family members or friends
•
If there are side effects with drugs, consult the doctor
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Reference Material
HIV Transmission
How is HIV transmitted?
HIV is found in large numbers in sexual fluids (such as vaginal secretions and
semen) and blood. It is easy for HIV to enter through the thin lining (mucous
membranes) of the vagina, penis, rectum, and mouth, where the mucous membrane
is thin and the blood vessels are close to the surface.
HIV infection is most often transmitted by unprotected sex. It can be passed from
either a man or a woman when any type of sexual intercourse (vaginal, anal, or oral)
is performed without using a condom. It cannot enter the body like the germs that
cause other conditions, like colds and diarrhoea.
Infected mothers can pass the infection to their babies while in the womb, during
childbirth, or after childbirth, through breast milk.
There are three main ways in which HIV is transmitted:
1) Through unprotected sexual intercourse (vaginal, anal, or oral) with an
infected person; that is, intercourse without a condom.
2) Through contact with infected blood, for example by:
■
Receiving a transfusion of infected blood
■
Sharing sharp, skin-piercing instruments, such as injection needles that
are not sterile
■
Contact with open sores or wounds
3) An infected mother infecting her unborn or newborn child
Ways in which HIV is not transmitted:
•
By being physically close
•
By living in the same home
•
By breathing the same air; coughing, and sneezing
•
By being in the same place: at work, on the bus, at the market, or at school
•
By playing together
•
By touching, shaking hands, or hugging
•
By kissing on the cheeks, hands, or forehead
HIV is also not transmitted by sharing:
•
Toilet seats or towels
•
Washing water or bath water
•
Swimming pools
•
Eating and drinking utensils
•
Work tools
HIV is also not transmitted by:
•
Being bitten by: mosquitoes, bed bugs, other insects, or any other animal
•
Donating blood
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Session 2: Problems Faced by People Living with HIV/AIDS
Time: 1 hour
Aim
This session will discuss various problems faced by PLHAs in various stages of their
infection. Illustrations and pictures will be used to give the correct information.
Learning objectives
At the end of this session, participants will be able to:
•
List the psychological problems faced by PLHA and how they can be helped.
•
List the social and economic problems faced by PLHA
•
Explain the importance of spiritual support
Session Activities
Activity
Time
(minutes)
Content
Materials
Slide(s)
1
30
Game: Find a thief
who robs the
happiness of a person
with HIV
Poster paper, flip chart (if
slides not available) and
markers
5 - 13
2
20
Role-Play
Chairs
14-27
The following material for this session is included at the end of this chapter:
Reference Materials
•
Psychological and social problems faced by people living with HIV/AIDS
Key points
•
When a person tests positive for HIV infection, he or she will go through a
chain of emotions
•
Hope can help each person to fight HIV and AIDS and to live positively and to
live longer
•
Support groups offer emotional, physical, and medical help to people infected
with HIV
•
Follow-up counselling can help an HIV-positive person to understand, cope
with, and accept their HIV-positive status
•
HIV-positive people have the same basic rights as other people
•
A basic responsibility of a person living with HIV is to preserve human life by
not deliberately infecting others
•
Maintaining confidentiality is important
•
Stigma is mainly due to a lack of education and understanding about the
disease
»
Spiritual support is very important, especially when a person knows he or she
is approaching death
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Note to the facilitator:
There are two activities in this session. One is a group discussion and the other is a
role-play. The facilitator should encourage the groups to identify the problems faced
by the people living with HIV and find solutions. These activities may take up to 80%
of the time meant for the whole session.
Activity 1: “Find the Thief” Game (30 minutes)
Topic: Emotional and social impact of HIV
Note to the facilitator:
The purpose of this game is to understand that the HIV virus itself doesn’t cause
emotional and social problems. The group has to identify the damage caused by the
thief who robs happiness from the affected persons.
Instructions:
After presenting slides 5 through 13, begin a discussion by making the
following statement: “Isn’t it a myth that the virus causes emotional disturbance? It
is our ‘fear’ about disease, pain, suffering, and death that causes problems. The fear
about social stigma and discrimination and some negative experiences also cause
these problems. This ‘thief causes a lot of damage to the self and body. We
shouldn't let this happen. Who is the thief and what is the damage? We have to find
the thieves and put them behind bars. So we are going to play police."
Then begin to play the game:
1. Create groups of 4 to 6 persons; have them sit in circles.
2.
Spread out a large piece of poster paper in the middle of each group.
3. Ask one person from each group to be the leader.
4.
Have the leaders draw a thief in the middle of the paper.
5.
Instruct the other group members to write or draw the various problems
(psychological, social, and economic) faced by people with HIV/AIDS around
the figure of the thief.
6. After people are done listing the problems, each member of the group should
share one experience that he or she has had in the past relating to one of the
problems.
7. The group should discuss, plan, and find strategies to "arrest" (stop the
damage from) the "thief."
8. Once everyone is finished, each group’s poster should be stuck on the wall
for everyone to see.
9. Toward the end, ask each group leader to summarise their discussion in 3 to
5 minutes in front of the entire group.
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Activity 2: Role-Play (20 minutes)
Title: We shall overcome
Notes to the facilitator:
This is a one-to-one counselling role-play. This helps the participants listen to the
other person, discuss their problems, and arrive at a solution to overcome these
problems. People may discuss real or imaginary problems depending on what they
are comfortable with - it is only important that they gain practice listening and
responding to the concerns of another.
Instructions:
1. Ask participants to divide into groups of 2, with one person playing the client
and the other the counsellor for 10 minutes.
2. After 10 minutes, the roles should be reversed.
3. Toward the end, the participants will come together and 5 volunteers will
share their experiences with the entire group.
4. The facilitator will then ask the group questions about the responsibilities of a
person living with HIV/AIDS.
5. This is also a good time to tell them about support groups and local
organisations that help people living with HIV/AIDS and hand out any
information available.
Variations:
1. The participants may go out and sit under a tree or walk while discussing.
2. Instead of groups of 2, there can be 3 in each group. One person can be the
observer and that person will narrate his or her observations about the
counselling and discussion.
Points to be covered during group discussion:
• Importance of support groups
• Access to free food and medicines
• Local organizations that help PLHA in income-generating activities and other
social support
• Confidentiality
• The responsibilities of a person living with HIV/AIDS
Summary (10 minutes)
The facilitator will wind up the discussion by summarising the session with the help of
slides.
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Reference Material
Psychological and Social Problems Faced by People Living
with HIV/AIDS
Psychological Problems faced by PLHA
When a person is tested positive for HIV infection, he or she will go through a chain
of emotions. Here are some of these emotions:
| Emotion
What can be done?
i SHOCK: The person might be shocked
| to learn he or she has HIV and feel
I confused.
It is good for people to be with someone
they trust.
DENIAL: The person might not want to
believe that she or he has HIV/AIDS.
Community health workers can help
them to understand how they became
infected and what having HIV or AIDS
means.
! What can be done?
ANGER: They might be angry with
themselves (feeling guilty) or with the
person they think gave them the infection
(blaming others) or even blame God.
Talking to someone they trust can help
them to overcome this feeling and accept
their situation. Anger can also be
directed at the caregivers, which should
not be taken personally. Help the HIV
positive person to talk about his or her
anger, guilt, and shame.
FEAR: People with HIV or AIDS fear
many things: Pain, losing their job, other
people knowing that they are infected,
rejection, leaving their children, the future
of their family, being a burden on their
family, infecting other family members,
and death.
These fears lessen when they talk to
someone who understands them.
LONELINESS: A person with AIDS might
often feel lonely.
Families and communities must
understand that people with HIV and
AIDS need companionship. Infected
people can often find others with HIV and
AIDS and provide companionship and
support for one another.
SELF-CONSCIOUSNESS: People with
HIV or AIDS might think everyone is
looking at them or talking about them
even though this is not the case.
They should be encouraged to stay
active in the community. Help them to
understand that as long as they take
preventive measures, they will not
spread the infection to their loved ones.
I DEPRESSION: If someone finds out that | Encourage them to continue with their
they have HIV or AIDS, they may feel
• normal routine as well as to put on nice
that there is no good reason for living.
clothes, visit friends, keep busy with
Depression can make someone weak in
things that matter, do something that
I helps others, and to think about their
both mind and body.
I children and friends, who still need them.
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ACCEPTANCE: After some time, people with HIV or AIDS will usually begin to
accept their situation. This helps them to feel better. Such persons will feel more
peaceful, and will begin to think about the best ways to live.
What more can a caregiver offer?
HOPE: It is important to have hope. Hope lifts spirits and gives strength to face each
situation. Hope can help each person to fight HIV and AIDS, to live positively, and to
live longer. You can help someone with HIV or AIDS have hope about many things.
For example, hope can come from thoughts like:
•
They will live a long time
•
Their baby will be healthy
•
Each sickness will be treated as it comes
•
They are loved and accepted for who they are
•
Scientists will find a cure
•
Belief in a life after death.
Remember, even if a person has hope today, it is still possible for them to feel angry
or depressed tomorrow. This is normal. Even people without HIV or AIDS go up and
down emotionally every day. The important thing is to try to instil feelings of hope
again and again.
Follow-up counselling
Follow-up counselling can help an HIV-positive person to understand, cope with, and
accept their HIV-positive status. HIV infection affects all dimensions of a person's life:
physical, psychological, social, and spiritual. Good counselling should always
consider both the physical and mental well being of a person.
Counselling should also inform people about the facts of HIV infection. Correct
information helps to dispel myths about HIV and AIDS.
Support is crucial to the success of any medical treatment. It is important that the
person understands why and how illnesses related to HIV should be treated. The
person should also be informed what treatment and care are available locally and
how they can access them.
People who have HIV, or people who are in contact with someone with HIV, are often
afraid that the negative feelings described above will become too strong. These
feelings cannot, and should not, be avoided. They are normal reactions to a crisis.
Family, friends, neighbours, health-care workers, or anyone who cares can help
another person cope with these feelings by listening and talking to the person about
their feelings.
Support Groups
Support groups consist of people who may be HIV-infected themselves, as well as
social workers, counsellors, and health-care workers. People from the community
who are interested in lending support to HIV-infected people may also be part of the
group. The purpose of forming such support groups is to lend emotional, physical,
and medical help to people infected with HIV. If people with HIV infection join such
support groups, they will find comfort as well as help in dealing with their day-to-day
problems. This will also give them emotional and social security.
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Rights and Responsibilities of PLHA
HIV-positive people have the following basic rights:
•
To be treated with respect at all times
•
To have access to appropriate health care
•
To have confidentiality regarding their condition by all who know about it
(within limits pertaining to the safety of their sexual partners, family members,
and caregivers).
•
To have a source of income / income-generating activity
•
To own, inherit, and bequeath property
•
To be free to worship according to their faith, which should be respected by
the caregivers
•
To participate in community activities and school
Basic responsibilities of PLHAs:
•
To preserve human life by not deliberately infecting others
•
To inform their sexual partners of their HIV status
•
To take steps while able to provide for their families' future
Confidentiality
Maintaining confidentiality means not telling other people outside the care team,
either accidentally or deliberately:
•
That the sick person has HIV
•
About the medications he / she is taking or the treatments they are receiving
•
How the person got HIV
•
Whether the person is a homosexual or uses drugs
•
Any other personal information about the person with HIV
Why is confidentiality so important?
Confidentiality is important for two main reasons:
•
It insures the dignity of the sick person. When someone’s most personal
information is kept confidential, they feel less vulnerable. The person will
have some control at a time when they are losing control in many other
aspects of their lives.
•
It generates a feeling of trust that the information the patient reveals will
remain confidential, thus creating trust for the caregiver.
When information about a person with HIV is accidentally or deliberately released, it
can cause a great deal of harm. The person may:
•
Be rejected by family, friends and community
•
Lose their job or may not be hired for a job
•
Not receive the support and good health-care that are needed
Stigma and Discrimination
"HIV/AIDS-related stigma is a real or perceived negative response to a person or
persons by individuals, communities, or society. It is characterised by rejection,
denial, discrediting, disregarding, underrating, and social distance. It frequently leads
to discrimination and violation of human rights.”
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(Definition of HIV-AIDS-related stigma produced from Stigma-AIDS 2001 discussions
and Regional Consultation on Stigma and HIV/AIDS in East and Southern Africa,
2001)
In simple terms, stigma means shame or disgrace to a person, usually because of a
contagious disease he or she has contracted or because of shameful behaviour. This
often results in people from the community keeping away from the sick person or
looking at him or her differently.
Discrimination is the unfavourable or unfair treatment of a stigmatised person or
class of persons in comparison to others.
Certain diseases are disfavoured in society, leading to discrimination against people
identified with them, and HIV/AIDS happens to be one of them. Of late, in India, we
have witnessed more and more positive community involvement in helping those
who are infected by HIV.
Factors that contribute to HIV/AIDS-related stigma:
•
Lack of education and understanding about the disease, for example that
HIV/AIDS is always fatal.
•
Myths and fears about how HIV is transmitted: Shaking hands, hugging,
drinking from the same container, and mosquito bites.
•
The disease's association with behaviours (such as sex between men and
injecting drug-use) that are already stigmatised in many societies.
•
Self-discrimination: There are cases where HIV-infected people discriminate
against themselves even when accepted by others. They are not comfortable
mingling with people who are not infected with HIV.
•
Religious or moral beliefs that lead some people to believe that having
HIV/AIDS is the result of moral faults (such as promiscuity or "deviant sex”)
that deserve to be punished.
Forms of HIV-related stigma and discrimination
Women and stigma
The impact of HIV/AIDS on women is particularly acute. In India, like other
developing countries, women are often economically, culturally, and socially
disadvantaged and lack equal access to treatment, financial support, and education.
HIV-positive women are treated very differently from men in many developing
countries. Men are likely to be “excused’’ for the behaviour that resulted in their
infection, whereas women are not. For example, the husbands who infected them
may abandon women living with HIV or AIDS, but it is usually the wife who is the
caregiver when the husband is infected. In addition, families may blame the woman
for the infection, even when it is the husband who brought HIV into the home.
In India families are the primary caregivers to sick members. There is clear evidence
of the positive role that the family plays in providing support and care for people living
with HIV/AIDS. However, many families do not respond positively. Infected members
can find themselves stigmatised and discriminated against within the home. There is
also mounting evidence that women and non-heterosexual family members are more
likely to be badly treated than children and men.
Hospitals and health-care clinics
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June 2005
People are stigmatised and discriminated against by our health-care systems. Many
studies reveal the reality of withheld treatment, non-attendance of hospital staff to
patients, HIV testing without consent, lack of confidentiality, and denial of hospital
facilities and medicines. One factor that fuels stigma among doctors and nurses is
the fear of exposure to HIV as a result of lack of protective equipment. However, we
hope to see reduced stigma among health-care providers as a result of several
training programs being conducted by the government and private agencies to dispel
these fears
Stigma and employment
While HIV is not transmitted in the majority of workplace settings, the supposed risk
of transmission has been used by numerous employers to terminate or refuse
employment. There is also evidence that if people living with HIV/AIDS are open
about their infection status at work, they may experience stigmatisation and
discrimination by others.
People who are living with HIV or AIDS often lack knowledge of their rights in society.
They need to be educated, so they are able to challenge the discrimination, stigma,
and denial that they meet in society.
Stigma and discrimination can deter people from getting tested, contribute to their
infecting others, and prevent people who are infected from receiving adequate care
and treatment.
Economic problems
When there is loss of employment, financial problems arise. Financial problems also
arise when the infected person is a daily-wage earner and cannot attend work on a
regular basis due to the various illnesses associated with HIV /AIDS. At such times it
is difficult for people to get medicines and food, leave alone nutritious food.
Such persons should contact the social workers in their area and seek information
about the availability of help from various organizations. Help may be in the form of
equipping them with income-generating skills or providing small loans to start an
enterprise.
Some organizations also give free medicines and food for the period of time when
the person is ill and is not able to work.
Reducing stigma and discrimination
Wider access to Voluntary Counselling and Testing Centres (VCTC) throughout
many states in India can lead to greater openness about HIV/AIDS and to less
stigma and discrimination. Seeing other people speaking out about their infection
status can encourage other people to come forward for testing. If people get tested
and speak out when they are not seriously ill, the affected persons can change the
image of HIV/AIDS from illness, suffering, and death to living positively with HIV. If
this is to happen, it is essential that people who speak out be provided with adequate
support. There are some examples where adequate support has not been provided
and people speaking out have faced verbal and physical abuse.
The involvement of people living with HIV/AIDS in social activities for reducing stigma
and discrimination is essential. People speaking out about their HIV status is one of
the first steps to be taken in tackling stigma and discrimination. This can make
people realise that HIV is part of their community and not just "other people's
problem." The role of people who are HIV-negative should also not be
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June 2005
underestimated. For example, HIV-negative people who speak out about HIV/AIDS
show wider support for those who are infected.
There is no single answer for overcoming stigma and discrimination, but many things
can be done to help. Policies or laws about equal employment and housing can help
combat HIV/AIDS-related discrimination. But the fear and prejudice that lie at the
core of HIV/AIDS discrimination needs to be tackled at the community and national
levels through a comprehensive public education program and advocacy by
politicians and celebrities. A more enabling environment needs to be created to
increase the visibility of people with HIV/AIDS as a "normal” part of any society.
Spiritual support
Loneliness, loss of control, and thoughts about impending death may give rise to an
interest in spiritual matters and a search for religious support. For such people it is
important that people from their faith visit them and give emotional support.
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Session 3: Living Positively with HIV/AIDS
Time: 2 hours 30 minutes
Aim: The aim of this session is to inform the participants how to manage HIV and
lead a healthy life by controlling daily activities and habits. It will also teach them the
importance of executing a will.
Learning objectives
By the end of the session, participants will be able to:
•
Understand that HIV is a manageable infection.
•
Describe the importance of the following aspects in the management of HIV
infection:
o
Medication
o
Nutrition
o
Healthy habits
o
Positive attitude
o
Good hygiene
•
Understand the importance of making a will
•
Describe the basic responsibilities of a person with HIV infection
Session Activities
Activity
Time
Content
Materials
Slide(s)
(minutes)
1
15
Group activity:
Chappathi Diagram Relative importance of
various factors that
help positive living
Poster papers in different
colours, marker pens, glue,
and scissors
4-13
2
20
Demonstration of
condom use
Condoms
Model of penis
KY jelly / glycerine
Pre-lubricated condoms
Garbage bin; Newspaper
19-23
3
40
Case study:
Handout - Ramu’s Story
Importance of making a (The Importance of making
will
a will)
4
30
Group discussion:
Positive Living
25-28
Poster paper and markers
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Living Positively with HIV and AIDS
•
Safe Sex
Participant Handouts
•
3.1 Ramu’s Story: The Importance of Making a Will
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Key Points
A person with HIV infection can lead a long and healthy life.
HIV infection is a manageable disease that can be controlled by a
combination of proper medication, nutrition, and hygiene
Exercise and adequate rest are also important in managing HIV infection.
Addictive drugs and alcohol interfere with medication and treatment.
A person with HIV infection has every right to be sexual. A fulfilling sexual life
is an essential part of our physical, mental, and spiritual heath.
A condom should be used even if both partners are HIV-positive.
It is the responsibility of every person with HIV infection to see that he or she
does not deliberately infect others.
A person with HIV infection should make a will and take steps, while able, to
provide for the family’s future.
An HIV-positive person should keep in touch with organisations in their
community for help.
Activity 1: Group activity - Chappathi Diagram (15 minutes)
Objectives:
•
To emphasise the important points the positive persons should remember to
lead a productive life with a positive outlook.
•
To understand more about the community’s perception of risk and the degree
of importance of each item.
Instructions:
•
After the interactive discussion on how to live a positive life after HIV
infection, split the participants into groups of 4 to 6.
•
Give each team 1 big white poster and 1 coloured poster. The idea is to
itemise the points to live productively and positively according to their risk
perception.
•
Instruct the participants to cut the coloured paper in circles like a chappathi, in
various sizes according to the degree of perceived importance, e.g., if the
group thinks Exercise is the most important point, the biggest circle will have
Exercise written in it. If the next in the priority list is Nutrition, then a smaller
circle will be cut and Nutrition written on it. (Note: If people are unable to read
or write, you can use different colour papers to show the different topics, e.g.
green paper for nutrition, blue for exercise, etc.)
•
, ask participants to draw a human body in the middle of the white poster and
then paste the chappathies they have made randomly around it.
•
Each group should then stick their poster on the wall for others to see it.
-
Once everyone has had a chance to look at the posters, open a discussion
about why people have assigned degrees of importance to the different
topics.
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Activity 2: Condom Demonstration (20 minutes)
Topic: The correct way to use a condom
Instructions:
•
Distribute the handout with step-by-step illustrations showing the correct use
of a condom.
•
Ask the participants if they know the meaning of "safer sex." When it is a
mixed audience (men and women), they may be embarrassed to answer
such questions. In these cases, you may have to encourage people not to be
shy or give the answers yourself.
•
You may then proceed to the demonstration of using a condom. This again
might cause embarrassing moments, especially for the women. You can ask
participants to volunteer to demonstrate with the help of the model. If people
are unwilling, you can demonstrate it yourself. By then the participants may
have become comfortable and you can ask them to do the demonstration
again.
•
Also include information about the proper use of a lubricant and show an
example of a lubricated condom.
Activity 3: Case Study (20 minutes)
Instructions:
•
Give out handout 3.1 Case Study: The Importance of Making a Will
•
Present Ramu's case to them. Ask questions such as:
o
Who do you think is responsible for Ramu's present condition?
o
What should Ramu’s father have done?
o
What would have happened if Ramu’s father had thought of making a
will?
o
Who can help people with HIV infection make a will?
•
Possible responses:
•
Ramu would not have suffered if a will had been made. The same uncle who
took away everything might have looked after him, hoping to get the property.
Or it might have been easier for the grandmother if she had got the rent from
the room.
•
Support organisations will be helpful in providing help in making a will. This is
very important to guard your spouse and children's rights and their future.
•
Keep in touch with support organisations for counselling and medical and
economic support when necessary (list provided at the end of the manual)
•
Summary (20 minutes) - Ask the participants if they still have questions. Once
any questions have been answered, summarise the session while making the
PowerPoint presentation.
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Activity 4: Group Discussion on Positive Living (75 minutes)
Topic: Positive Living
Instructions
•
Divide the participants into 3 groups.
•
Give each group a topic (see below), which will be discussed within the group
and presented by one person from each group.
You should tell them briefly the points they should cover during the discussion. They
should also be told that they can add additional discussion points when needed.
Group 1: The importance of good habits, food, exercise, and activities in leading a
long and healthy life. Points to cover:
•
We should change harmful habits
•
We should eat from all groups of food to remain healthy
•
Exercise is necessary to strengthen us and for good sleep
•
We should get enough sleep
•
It is important to be busy inside or outside the house
•
Being part of support organisations helps
Group 2. The importance of health care, hygiene, and having hope of a healthy and
happy life in a person with HIV infection. Points to cover:
•
Cleanliness of the home and body is very important
•
Medications should be taken regularly
•
They must be careful while handling pets
•
Stress can be cut down by practising meditation or by talking to people close
to the person
•
The most important thing in life is HOPE - of a long and healthy life
Group 3: Harmfulness of addictive drugs and alcohol, the importance of a healthy
sex life, and the basic responsibilities of a person with HIV infection. Points to cover:
•
Drugs and alcohol are harmful to health
•
Drugs and alcohol interfere with the effects of medication
•
People addicted to drugs and alcohol with HIV infection have more problems
than other HIV-infected people
•
Addiction to drugs and alcohol interferes with the person’s decision-making
abilities, which leads to risky behaviour
•
Harm reduction
•
Substitution treatment
•
Medical problems faced by injecting drug users
•
If needles and syringes are to be reused, they should be sterilised with bleach
solution or boiled in clean water
•
An active sex life is also important for a person with HIV infection, but it
should always be safe sex
•
The basic responsibility of a person with HIV infection is not to deliberately
spread the infection
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Order of events
Group preparation (30 minutes)
While preparing for their presentation, the facilitator offers support and
guidance to individual groups. At the end of 30 minutes the groups are called
back to make their presentations.
Group presentations and feedback (45 minutes -15 minutes each)
The groups now make their presentations one at a time. The facilitator will
write down the main points made on the flipchart/board. After each group's
presentation, a feedback and discussion session will follow about the facts
presented and the skills and methods used. Use the following questions:
• What was good?
• What did you learn from the presentation?
• What are your suggestions?
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Reference Material
Living Positively with HIV and AIDS
Living with HIV/AIDS is not easy. There may be a lot of problems - physical, mental,
financial, and social. The family will also go through a lot of trying times. In many
families, caregivers themselves may be HIV-infected.
Today, HIV infection is no longer considered a death sentence. It is being viewed as
a chronic infection that can be controlled by a combination of proper medication,
nutrition, and hygiene. This should give hope to the person with HIV and he or she
should be determined to live a long and healthy life.
Studies have shown that the damage caused to the body by HIV can be reversed to
a great extent if people change their habits: Eat nutritious food, exercise, practise
good hygiene, and treat infections on time. Such people tend to live healthier and
longer lives than other people.
Importance of vitamin supplements
Multivitamin supplementation with vitamin B complex and vitamin E delays the
progression of disease among HIV-infected people. Supplementation with
multivitamins also reduces complications including oral thrush, oral ulcers, and
difficulty in swallowing. Nausea, vomiting, and diarrhoea were also less frequent
among HIV-infected people who received multivitamins.
Multivitamin supplements delay the progression of HIV and provide an
effective, low-cost means of delaying antiretroviral therapy in HIV-infected
people.
To lead a healthy and long life (for PLHA), change your habits:
•
Remain faithful to your partner/spouse
•
Always use a condom, even if your partner is infected
•
Do not smoke. Smoking is harmful to the lungs and weakens the body.
Infections like tuberculosis and pneumonia can be more easily contracted or
aggravated by smoking. If you can’t quit, cut down.
•
Do not use illegal drugs. Seek help to stop. If you cannot stop, reduce the
intake, as drug use interferes with the medicines taken to treat infections and
to treat HIV.
•
Do not share needles and syringes. If you must share, clean Jthe needles with
a bleach solution or boil them
Eat nutritious food
•
Eat as well as possible, with a mixture of staple foods, peas and beans, leafy
dark-green and orange vegetables, fruits and oils, and fats, (refer to section
on nutrition)
•
Have nutritious snacks in between meals, like groundnut/sesame bars
(chikkis) or boiled gram with grated vegetables
«
Eat small meals several times a day to maintain your weight
•
Drink plenty of boiled water - at least 8 glasses a day, especially if you are
taking medicines
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June 2005
Exercise
•
Exercise regularly at least half an hour every day.
•
Forms of exercise can be walking, cycling, swimming, or games like cricket,
football, and badminton. Choose according to your ability and choice
•
Exercise helps you to relax more and sleep better.
•
Don’t exercise when you are not well.
Rest
•
Have a regular sleep schedule.
•
Irregular and insufficient sleep puts the body under stress and weakens your
immune system.
•
Sleep at least 7 to 8 hours a day.
Keep yourself occupied
•
Be involved in the daily activities of the house.
•
When at home, play indoor games like cards, carroms, chess, etc. with
children or other family members.
•
Be socially active and visit with friends and relatives.
•
If working outside the house, continue with your work.
•
If possible, activities like poultry farming and gardening can also be enjoyed
(protect hands with gloves or plastic bags and wash hands well afterwards).
Be part of support organisations
•
Attend support group meetings.
•
People with HIV make excellent counsellors, so offer your services as a
counsellor.
•
Keep in touch with support organisations for counselling, medical, and
economic support when necessary (list provided at the end of the manual).
Treat infections promptly
•
Follow your doctor’s instructions and take the medications you are
prescribed.
•
Treat symptoms through normal remedies, e.g., ginger tea for colds and
paracetamol for headaches (refer section on symptom management).
•
If symptoms don't go away in a day or two, consult a health worker.
•
Don’t go near people with a cold, flu, herpes zoster or any other infection until
they are healed.
•
Family members should also get their infections treated quickly.
Maintain good personal hygiene
•
Keep windows open to let fresh air in. There are fewer germs when things are
clean.
•
Have a bath everyday.
•
Maintain good oral hygiene.
•
Keep nails short.
•
Be careful while handling body fluids, including menstrual blood (refer to
section on home nursing).
•
Wash hands before eating or touching food and after using the bathroom or
touching stained clothes. Frequent washing of hands is very important.
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June 2005
Get regular health care
•
Take medications as prescribed and recommended by your doctor.
•
See your doctor regularly.
•
Seek care whenever you develop symptoms of infection.
•
Taking the vitamin supplements prescribed by the doctor regularly, will keep
you from acquiring many infections.
Handle pets carefully
•
Pets can be a source of infection, especially cats and birds.
•
Have family members care for pets, especially cleaning up of faeces.
•
Ask the health worker to advise you on handling pets.
•
Avoid stray animals.
Cut down on stress
•
Reduce stress by prayer, meditation, or yoga.
•
Get involved in activities at home and outside the home.
•
Talk to someone you trust about the diagnosis and the illness.
•
If depression or anxiety doesn t lessen from these activities, see a doctor.
Never give up: The power of the mind to boost the body toward healing is
amazing. The power of hope is one of the best tools you can have for long
term survival.
Drugs and Alcohol
Drugs and alcohol are bad for the immune system and health when used in large
quantities. Drinking can create a problem with the effect of medications and damage
the liver. Smoking irritates the lungs and can make lung infections like pneumonia
worse. Drugs like ganja and hashish damage the immune system and give a false
sense of energy, leaving the body exhausted. Any drug that is bought off the streets
may be mixed with something even more dangerous than the drug itself.
Under the influence of alcohol or drugs, people tend to indulge in risky behaviour.
Preventive measures like using a condom during the sexual act are not adhered to,
not because of lack of knowledge but because alcohol and drugs affect a person’s
decision-making abilities. Thus HIV-infected people who are addicted to alcohol or
drugs put themselves as well as their sexual partners in danger.
Be sure to tell the health-care provider(s) about the patient’s drug or alcohol use.
Without this information, they could misdiagnose their symptoms or prescribe a drug
that could worsen the person’s condition. The health-care provider may encourage
them to quit or cut down, but don’t let this stop them from getting the medical care
they need.
Cutting Down or Quitting - While stopping the use of alcohol or drugs is usually the
best way to maintain or improve health, abstinence is not possible for everyone.
Decreasing the amount and frequency of tobacco, drug, or alcohol consumption is
more realistic. It is still a positive step toward better health and may be more
manageable. Some people have managed alcohol addiction by limiting the number
of drinks they allow themselves. The same is true of some heroin users.
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Substituting other activities for the use of addictive substances is a way to fill time
and experience other things that make them feel good. Think about things they
enjoyed doing before they started using drugs - they may still like them. Dancing,
running, bicycling, reading, meeting people, cooking, and repairing things around the
house are a few ideas.
For some people, joining Alcoholics Anonymous (AA), or another support group is a
way to spend time with others who are not drinking or using drugs. In general, if the
people around are supportive of attempts to quit or cut down, the changes made by
the person will be easier to maintain.
Relapse or "slipping" is a common experience for many people who try to quit or cut
down on drinking or using drugs. Relapse can be used to examine what and how
certain thoughts and situations may have led the person to start using again, and you
can choose to avoid these triggers in the future.
Problems faced by injection drug users and people addicted to alcohol:
A person addicted to alcohol or drugs who is also infected with HIV has more
problems than other HIV-positive people. They have to tackle their addiction along
with the problems that come up because of HIV. When they try to give up drugs or
alcohol, they may face severe withdrawal symptoms.
Withdrawal symptoms in a person addicted to drugs:
•
Watery eyes
•
Diarrhoea
•
Pain in the joints
•
Sleeplessness
•
Stomach pain
Withdrawal symptoms in a person addicted to alcohol:
3
•
Anxiety
•
Insomnia (inability to sleep)
•
Inability to eat food
•
Jerky movements and tremors (trembling of hands)
•
Irritability
•
Disorientation
These symptoms may make people go back to their addiction. However, there are
many people who have come out of it. Many of them have also been infected with
Hepatitis B and Hepatitis C as these are diseases that are easily transferred through
the sharing of needles. In these cases, infection with HIV can make their condition
worse. They are not able to take the ARV drugs that are given free by the
government hospitals, as they affect the liver and their liver maybe already damaged
because of Hepatitis. At the same time, they may not be able to afford the secondline treatment, as these medicines are not given out for free and are quite expensive.
Those who suffer from addiction may find it hard to strictly adhere to the medications.
Their first priority is to get drugs or alcohol. They may not remember about the HIV or
TB medicines (if they have TB) they have to take. Both of these medications require
strict adherence; otherwise their effects are lost.
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Intravenous drug users infected with HIV face additional medical problems. They
may have wounds or abscesses that can get infected and there may be swelling or
bruising around the infection site. These wounds and swellings should be cared for
according to the instructions given in Section 6 on 'Wounds.” They also face more
psychological problems. Most health providers are wary of HIV patients who are on
drugs, the main reason being their inconsistency in taking medication as well as in
making regular health visits. Most people look at drug addicts as people who are
good for nothing and as thieves. When they have HIV they are doubly stigmatised.
This may cause them to lose interest in their lives and to not seek help when it is
most needed.
For many HIV-positive people, injection drug use was the way they got infected.
Many continue to use IV drugs. If you still use drugs, here are some ways to prevent
infecting others with HIV:
•
Clean injecting equipment properly with bleach.
•
Don’t share injecting equipment. If you must share syringes or needles,
sterilise with bleach or by boiling after every use. To clean syringes:
•
•
o
Flush syringes with clean, cold water - this removes the blood in the
syringe before it clots.
o
Fill syringe with undiluted bleach drawn up through the needle.
o
Leave for half a minute and empty the syringe into the drain.
o
Repeat the process and rinse clean the syringe with cold water.
o
If the syringe is made of glass, put the needle and syringe in clean
water and boil it for 20 minutes.
Use sterile needles and syringes (make use of the needle exchange
programmes).
Go to an organization that offers substitution treatment - drug substitution
means replacing the drugs a drug user is taking with another drug or a similar
drug to replace injecting the same drug.
Sex and people living with HIV
PLHA have every right to be sexual. Sex is one of the most important parts of our
lives. For many of us, a fulfilling sexual life is an essential part of our physical,
mental, and spiritual health. Sex after testing HIV-positive can still be what it was to
you before. One piece of advice: It still has to be safe! Some people believe that
having HIV means that it’s too late for them, that safer sex is no longer relevant. But
that it is a wrong thought! Practising safer sex will protect your health and the health
of your sexual partner.
Even if you and your partner are both HIV-positive you have to use condoms,
otherwise you can get more of the virus from having unprotected sex. There are
different types of HIV, and you and your partner may not be infected with the same
type.
Safer sex also protects you from STIs, which can weaken your immune system and
make life more difficult. There are many reasons for having sex, from stress
reduction to love. You and your spouse or partner should discuss this. HIV infection
should not bring your sex life to an end.
Important: Practise safe sex and protect others from HIV infection.
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Reference Material
Safe Sex
What is safe sex?
•
Using a condom for all types of sexual intercourse (vaginal, anal, or oral) so
that the body secretions that contain HIV do not come in contact with the skin
or mucous membranes of the partner.
•
Avoiding penetrative sex, for example by replacing with masturbation,
massage, dry kissing, and hugging.
•
Avoiding sex when either partner has open sores or a sexually transmitted
disease (STI).
Correct use of a condom
•
First and foremost, check the expiry date of the condom.
•
Be sure you have a condom before you need it.
•
Each time you have sex (vaginal, oral, or anal), put a new (check expiry date)
and unused condom on the penis before it enters the vagina, rectum, or
mouth. Use a new condom for every sexual act, even if it is with the same
person and at the same time.
•
Put the condom on only when the penis is erect.
•
When putting on the condom, hold it so that the rolled rim is on the outside. If
you are not circumcised, first pull the foreskin of the penis back.
•
Do not pull the condom tightly against the tip of the penis but pinch the end of
the condom when unrolling it. This leaves a small empty space to hold the
semen.
•
Unroll the condom all the way to the base of the penis.
•
If the condom tears during sex, withdraw the penis immediately and put on a
new condom.
The following tips will help prevent condoms breaking or leaking:
•
If lubricant is needed, use a water-based lubricant like KY Jelly, or glycerine.
Do not use a lubricant made with oil, like Vaseline.
•
Store unused condoms in a cool, dark, dry place. Heat, light, and humidity
can damage condoms.
•
If you have a choice, choose pre-lubricated condoms that are packaged so
that light does not reach them.
Note: Even if both the partners are HIV-positive, a condom should be used to
avoid contracting further infections. The infections carried by one partner will
easily be transmitted to the other, further weakening that partner if a condom
is not used.
Who is at high risk for sexual transmission of HIV?
Anybody is at risk if they have:
•
Venereal diseases and/or sores on their genital parts
•
Many sexual partners and/or have sex with commercial sex workers (male or
female)
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June 2005
How to prevent sexual transmission of HIV
HIV infection can be prevented by:
•
Abstinence (if possible)
•
Delay age of sexual activity
•
Avoiding multiple sexual partners
•
Condom use (practising safe sex)
Abstinence may not always be possible. The best method is to use condoms
correctly and every time, which greatly reduces the risk of HIV infection through
sexual intercourse.
HBC Facilitator’s Guide
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June 2005
[J Participant Handout
3.1 Ramu’s story: The importance of Making a Will
Who is Ramu?
• Ramu is 8 years old
• He is the only child of his parents.
• His father was an auto driver and his mother worked as a part-time maid.
• They earned enough to give Ramu a comfortable life.
• They had a cot, a fan, and even a black-and-white TV.
• He was one of the most neatly dressed children in his class.
• The one room that they lived in belonged to Ramu’s father.
What happened to Ramu?
• Last year his father died and six months ago his mother died.
• Now Ramu lives like a destitute (very poor person).
• His father's brother took away all the things from the house and gave the
room for rent.
• Ramu was sent to his grandmother, who is very old and poor and can barely
take care of him.
• He has stopped going to school and walks around in dirty clothes.
Questions for discussion:
• Who do you think is responsible for what happened to Ramu?
• What should Ramu’s father have done?
• Who can help people with HIV infection make a will?
• What would have happened if Ramu’s father had thought of making a will?
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June 2005
Session 4: Prevention of Infections in the Home
Time: 1 hour 45 minutes
Aim
This session is for caregivers, peer educators, and people living with HIV/AIDS. In
this session they will be taught about the preventive measures to be taken to keep
away from HIV infection and that personal cleanliness and cleanliness in the house
and surroundings are very important in keeping the person and the caregiver healthy.
Learning objectives:
By the end of the session the participants will know:
•
Who is at risk of the infection
•
How to prevent infection at home (practise Universal Precautions)
•
The correct way of using a condom
•
How to maintain good hygiene inside the home and outside
Session Activities
Activity
Time
(minutes)
Content
Materials
Slide(s)
1
30
Discussion and
presentation of
prevention of HIV
White board and markers
3-9
2
45
Lecture and
demonstration on
prevention of HIV and
other infections at
home
Garbage bin, newspaper,
gloves or plastic bags with
no holes
10- 16
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Prevention of Infections in the Home
Key points:
•
Needles should not be shared; otherwise they have to be sterilised.
»
Universal Precautions should always be kept in mind when taking care of a
person infected with HIV.
•
Good personal and social hygiene should be maintained.
•
Razors and toothbrushes should not be shared with anyone.
•
HIV-infected people should never donate blood, plasma, semen, or body
organs.
•
In case of accidental exposure to HIV infected blood or body fluids, the
health-care provider should be contacted immediately for PEP.
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June 2005
Activity 1: Discussion of good hygiene (30 minutes)
Topic: Maintaining good hygiene
In the previous session, the participants would have already learned about
transmission of HIV. This will help them to discuss about the prevention of HIV.
Instructions:
•
Review slides 3 through 8 as a group.
•
If there are more than 8 participants, divide them into 2 groups
•
Each group will then discuss the topic for 15 minutes. The facilitator may help
start the discussion by asking questions like:
o
What does good hygiene mean to you?
o
Why do you think good hygiene is so important when caring for •
PLHAs?
•
Once the group(s) is finished, a representative from each group will present
the topic to the other group.
•
The other group will point out if anything is wrong or missing and give
feedback about what has been presented.
The facilitator should note the points as they are presented. This can be reviewed to
understand what participants have/have not grasped from the previous session.
Activity 2: Lecture and demonstration on home prevention techniques
(45 minutes)
Topic: Preventing infections in the home
Instructions:
•
Review slides 9 through 16 as a group.
•
Stree need for the home and the family members to maintain cleanliness.
•
Make clear that questions can be asked while the presentation is going on.
•
Ask several questions based on the information given in the slides, such as:
o
Is it important to wash hands before preparing food?
o
Why should hands be covered with gloves/plastic bags?
o
Where and how should waste from the house be disposed of?
o
If you don’t have a bathroom what should you do?
•
Give out plastic bags and show them how the hands should be protected with
them when throwing out the trash or doing other activities that may transmit
infection. (More techniques will be covered Session 11: Home Nursing Care.)
•
PEP should also be explained and questions answered as needed.
Session Summary (15 minutes)
The session can be closed by briefly reviewing the points discussed during the
session. Any questions can be answered. The trainer should make it clear that he or
she will be available even after the session to answer any questions. Some of the
participants might be too shy to ask questions in front of others so it is important that
you are able to answer questions in private.
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June 2005
Reference Material
Prevention of HIV and Other Infections at Home
In home-based care, the home is the place where a person with HIV will be cared for
and will spend most of his or her time. This means it should be a safe place where
he- she will not contract infections. This can be made possible only by practising
good hygiene.
Good hygiene
Cleanliness is of great importance in the prevention of many kinds of infections infections of the stomach, the skin, the mouth, the eyes, the lungs, and the whole
body. Personal cleanliness (or hygiene) and public cleanliness (or sanitation) are
both important.
Many common infections of the stomach are spread from one person to another
because of poor hygiene and poor sanitation. Germs and worms (or their eggs) are
passed in the faeces of infected persons. These are carried from the faeces of one
person to the mouth of another by dirty fingers or by contaminated food or water.
Since an HIV-positive person's ability to fight germs is low, living under unhygienic
conditions may cause that person to fall ill more often than someone living in a
healthy and hygienic environment. This, in turn, may hasten the progression of the
virus. Care should be taken to see that the patient and the family members keep
themselves, their house, and surroundings clean. Always use clean water for all
purposes.
Keeping clean:
•
Mouth and teeth cleaning should be done after meals. Use a toothbrush or
neem twig to gently scrub teeth, tongue, and gums to remove food.
•
Bathe daily with soap and water.
•
Take special care to wash the private parts.
•
Wash the patient’s clothes and bedding frequently and dry them in the sun.
•
Dry the skin gently with a soft towel after a bath and oil the skin with cream or
vegetable oil.
•
Use plastic sheets under the bed sheets to keep the bed dry.
•
Fingernails and hair should be kept short.
In the house:
Always wash your hands before:
•
Cooking
•
Eating
•
Feeding another person
•
Caring for a baby
Always wash hands after:
’
Using a toilet or changing nappies
•
Working in the fields or garden
HBC Facilitator's Guide
June 2005
51
xa^CPHE - SOCHARA^
Koramangala
Rangalore- 34^z
Other practices that ensure good hygiene:
•
Wash eating utensils, including items for babies, with soap and water.
•
Wash all raw fruits and vegetables with clean water.
•
Keep food covered so that flies cannot land on it.
•
Store boiled water in a clean container, covered with a clean lid, and use a
clean ladle to take out water.
•
Keep the house and surroundings clean so that no flies or mosquitoes breed.
•
Cover mouth when sneezing or coughing.
•
Avoid spitting. If you must spit, use a container, not the ground, and keep the
container covered.
•
Dispose of waste properly.
•
Put soiled things like bandages, clothes, etc. into containers or buckets lined
with thick plastic bags. Tie the bags.
•
Put sharp items like razors or needles in metal containers.
•
Keep waste away from children and animals.
•
Bury or burn the waste away from the house.
Preventing HIV transmission in the home
There is no risk of acquiring the virus from HIV-infected people in the home provided
you follow certain simple rules:
•
Use a piece of plastic or paper, gloves, or a big leaf to handle items soiled by
blood, faeces, or other body fluids.
•
Wash hands with soap and water after changing soiled bed sheets and
clothing, and after having contact with body fluids.
•
Keep wounds covered. Both caregivers and people with HIV should cover
any open wounds they have on their hands or other places. Cover open
wounds with a bandage or cloth.
•
To clean up a blood spill, wear household or rubber gloves. You can use
plastic bags if gloves are not available. Wipe up with a disinfectant such as
bleaching powder (one full teaspoon in one mug of water). Hands should
always be cleaned afterwards with soap and water.
•
Dispose of used gloves by burying in a pit.
•
Don’t share sharp skin-piercing instruments. Don’t share toothbrushes,
razors, needles, or anything else that can cut or come into contact with blood.
To clean clothing or sheets stained with blood (including menstrual blood), diarrhoea,
or other body fluids:
•
Wear rubber gloves or plastic bags on your hands.
•
Make sure that the gloves/plastic bags don't have any holes.
•
Rinse off any blood or diarrhoea with water. Be particularly careful if there
are large amounts of blood, such as after childbirth. If possible, the
bloodstained clothes should be soaked in bleach solution - one capful in half
a bucket of water (common brands - Robin and Ala) for 20 minutes. Wash in
soapy water, and then hang to dry in the sun.
•
Separate soiled items from other household laundry.
Note: Caregivers who have cuts, wounds, or sores on their hands or even badly
chapped/cracked skin should wear gloves when giving any personal care or doing
any washing. If gloves are not available, plastic bags with no holes should be used
instead.
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June 2005
Universal Precautions
We should always take precautions and practise infection control because we have
no way of knowing what infections we or anyone else might be carrying. By
practising Universal Precautions, the caregiver and the patient are both protected
from infections.
We should be extremely cautious with blood or any other body fluids - urine, faeces,
vomit, semen, saliva, drainage from a wound (open sore, cut, surgery), vaginal
secretions, menstrual blood, and bleeding after a woman gives birth.
"Universal Precautions" means following specific procedures when washing hands,
wearing gloves when required, cleaning various areas of the house, washing clothes,
and preparing food.
Hand washing:
Washing our hands really well with soap and water is still the best way of preventing
the spread of infection
Hands should be washed:
•
Before and after every contact with the sick person
•
Before and during food preparation
•
Before eating
•
Before and after using the toilet
•
After removing gloves
•
After removing mask
•
After coughing into our hands or blowing our nose
Gloves:
Gloves provide a barrier for both the patient and us. Gloves should be used only
once and then put in the garbage. If gloves are not available, use plastic bags over
the hands. Make sure there are no holes in the plastic bags.
Gloves/plastic bags should be worn for:
•
Cleaning up any body fluids (vomit, faeces, urine, blood) on the sick person,
the floor, the toilet or commode, bed sheets or clothing
•
Bathing or giving skin care to any area that has cuts or open wounds
•
Cleaning teeth or dentures
•
Washing hair in case there are open areas on the scalp
•
Washing the buttocks and genital area
•
Changing napkins
•
Picking up clothes and washing the sick person's clothes (they may be soiled)
•
Disinfecting with bleach
Personal hygiene:
Personal hygiene is very important because it helps minimise the spread of germs
from the caregiver to the sick person and from the sick person to the caregiver. Do
not share toothbrushes, razors, or injection needles that come in contact with body
fluids. Clean combs and hairbrushes with Dettol or Savlon. If these disinfectants are
not available, water in which neem leaves have been boiled can be used.
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June 2005
Washing clothes:
Wear gloves or plastic bags while washing the sick person's clothes. If possible,
wash in warm water with regular detergent. Dry in the sun.
Cleaning:
For general cleaning, a bleach solution of 1 part bleach (bleaching powder/bleaching
solution is available at most grocery shops) to 10 parts water can be used.
Bathrooms should be cleaned frequently, after any spills of urine or faeces. Kitchens
should be extremely clean. Utensils also should be washed very well.
When there are no bathrooms:
In places where there are no latrines, people tend to defecate in the open. In such
cases, people should use places far away from houses and the faeces should be
covered by mud.
When a person is too ill to go out, an old bucket with no holes can be kept inside the
room and used as a commode. It should always be covered and the contents thrown
off as soon as possible.
Disposal of sharps and needles:
Whenever sharp instruments or needles are used on a sick person, they should be
placed into a metal container with a lid and burnt soon after. Strong plastic bags can
also be used, which can be burnt along with the sharps.
Post Exposure Prophylaxis (PEP)
Prophylaxis means a method or treatment aimed at the prevention of disease.
Post Exposure Prophylaxis (PEP) is a type of antiviral therapy for HIV designed to
reduce (but not eliminate) the possibility of infection with the virus. Currently, PEP is
primarily given only in hospital situations when a staff member (a doctor, a nurse, or
an assistant) accidentally cuts herself or himself with a sharp instrument like a needle
or a blade that was used on an infected person.
If it happens outside the hospital, for instance, if an open wound or sore of the
caregiver comes into contact with infected blood or body fluids, then it is advisable to
see a doctor within 24 to 36 hours and get PEP medications.
PEP usually involves continuous treatment for approximately 4 weeks. These are
powerful drugs and must be taken following strict dosing guidelines; side effects are
very common, and can sometimes be serious.
The science behind the use of Post Exposure Prophylaxis is that antiretroviral
treatment given immediately after exposure to HIV may stop infection by stopping
HIV replication and allowing the person's immune defences to wipe out the virus.
The person will also be asked to take HIV tests for at least 6 months post-exposure
(e.g., at 6 weeks, 12 weeks, and 6 months). Follow-up counselling is also very
important as she or he will be emotionally affected. The fear of being infected will
always be there.
The exposed person should seek medical help for any acute illness that occurs
during the follow-up period. Such an illness, particularly if characterised by fever,
rash, fatigue, or a general feeling of illness, might be symptoms of HIV infection or
also might be effects of a drug reaction or another medical condition.
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June 2005
Session 5: Nutrition and Food Safety
Time: 2 hours
Aim
This session will teach the participants the importance of nutritious food in managing
HIV infection. It will also teach them the importance of personal hygiene.
Learning Objectives:
By the end of the session participants will be able to:
•
Understand and describe the importance of nutrition in managing HIV
infection
•
Know the various groups of food necessary for a balanced diet
•
Suggest ways to coax a person with a low appetite to eat
•
Describe safer cooking
•
Describe the importance of personal hygiene
•
Describe the importance of hygiene in the kitchen
•
Suggest a simple and healthy menu for HIV-infected people
Session Activities
Activity
Time
(minutes)
Content
Materials
Slide(s)
1
120
Case studies and
demonstrations - the
importance of a
balanced diet,
personal and
environmental
hygiene, and loss of
appetite
Flip chart/ white board
and markers
Handout on Nutrition and
Food Safety
Handouts of case studies;
cereal for sathu mav
preparation;
4 pieces of muslin cloth,
each big enough to hold 2
cups of grain
water
sauce pan
stove
mixie/stone grinder
31 -34
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Nutrition and Food Safety
Participant Handouts:
•
Nutrition and Food Safety Case Studies
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June 2005
Key Points
Good nutrition plays an important role in slowing the progression of HIV.
Medication is always less effective in people with poor nutritional diets.
A balanced diet should consist of food from the three main groups: BodyBuilding Foods, Energy-Giving Foods, and Health-Giving Foods
Healthy foods are not expensive.
Loss of appetite and difficulty in eating is common in people with HIV/AIDS.
People with HIV infection get sick more often from food-borne illnesses - raw
food, poorly cooked food, and contaminated food.
The person who is cooking should take care of her/his personal cleanliness.
Drinking water and food should always be covered.
Food should be cooked well and stale food should be avoided.
Meat and fish should be cooked well.
Activity 1: Small group discussion, role-play, and demonstrations (1
hour 15 minutes)
Topic: Food safety, balanced diet, loss of appetite, and difficulty in eating.
Instructions
Small-group discussion (20 minutes)
(If possible, plan ahead and make visits in small groups to the homes of people with
HIV infection. You will be able to describe and demonstrate to the real-life audience.
Sometimes learning does not have to take place in the classroom.)
•
After reviewing slides 3 through 30 as a group, ask participants to divide into
3 groups.
•
Give out participant handout 5.1, Nutrition and Food Safety
•
Ask each group to choose 1 of the 4 case studies for discussion. Instruct
them to discuss and answer the questions given for their case on the
handout.
•
For each case study, use the information given below to guide participants in
how to address each question.
Group presentation and feedback (30 minutes)
At the end of 20 minutes, a representative from each group will present the case.
Demonstrations will also be done in front of the class. Each group will be given 10
minutes for the presentation.
The facilitator will write down the main points made on the flipchart/board. After each
group's presentation, a feedback and discussion session will follow about the facts
presented and the skills and methods used. Use the following questions:
•
What was good?
•
What did you learn from the presentation?
•
What are your suggestions?
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June 2005
Three main topics will be covered in this session Cleanliness in the home; types of
foods and balanced diet; and loss of appetite and difficulty in eating. Use the slides
given to explain these topics in brief to all the participants. This will give them a
clearer picture of how to address the problems in each case study.
1. Cleanliness in the home and surroundings and food safety
Case study # 1
You visit a person with HIV infection in his home. He has diarrhoea. You find the
house to be in a mess. There are flies everywhere. Food is kept uncovered. His wife
and children are in dirty clothes. You can guess the reason for his diarrhoea. What
advice will you give him and his wife about hygiene?
Possible questions:
1. Do you know one of the reasons for diarrhoea is contaminated food?
2. Do you know another reason for diarrhoea is unhygienic conditions?
Points to be covered:
•
Keeping the house and surroundings free of flies
•
Food safety
•
Water safety
•
Personal hygiene
•
Safe cooking
•
Storage of food
•
Storage of water
2. Types of food and a balanced diet
Show the participants pictures of different kinds of fruits, vegetables, cereals, meat,
and fish. Ask them what foods are good for people who are ill and what foods are
not. A lot of people in India have misconceptions about food. Chances are that you
will get varied answers on that. The facilitator should note the answers. You have to
emphasise the fact that all foods are good for people who are ill. People with HIV
need more of all these foods than other people.
Case study # 2
Ramu has HIV infection. When he is counselled about proper nutrition, he feels that
healthy foods are expensive. How will you change his mind?
Points to be covered:
• Food groups
• Low-cost healthy foods
• Preparation of Sathu mav
• Balanced diet
• Sample menu
A rough calculation of the cost of a simple meal can be made to convince the person
that healthy food need not be expensive. Preparation of Sathu mav can be
demonstrated.
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June 2005
Loss of appetite and difficulty in eating
Tell the participants that people with HIV have a lot of oral problems that make it
difficult for them to eat. Medications also cause loss of appetite. Ask them if they
have encountered such problems in their homes.
Case study # 3
Radha has a low appetite. She is not eating well, and thus losing weight. She has
difficulty eating even the little her mother forces her to eat. Her mother is worried.
What advice will you give her mother?
Possible questions:
1. What food does Radha like?
2. What are the foods you give her?
3. How many times do you give her food?
Points to be covered:
• Give foods liked by the person
• Small, frequent meals should be given
• Mashed food can be given
• Lots of water should be given
Step 3: Summary (15 minutes)
The facilitator will summarise the session. After this, questions should be encouraged
and answered either by other participants or the facilitator.
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June 2005
MJ Reference Material
Nutrition and Food Safety
Good nutrition plays an important role in slowing the progression of HIV and keeping
an HIV-positive person healthier for a longer period of time. A well-balanced diet
provides energy and nutrients to help the body fight infections. Good nutrition also
helps to give a sense of well being and strength. The same foods that are good for
you when you are healthy are good for you when you are sick.
A sick person has an even greater need for food than a healthy person. People
should be encouraged to think about the foods that will help make them healthy,
rather than worry about foods that are not considered to be good for them.
HIV disease and many of the associated diseases cause stomach problems, which
make it impossible for the body to absorb the nutrients from food. As a result, the
patient loses weight even though they are eating.
Medication is always less effective in people with poor nutritional diets. A balanced
meal should consist of food from each of the groups below.
•
Energy-giving foods - rice, wheat, maize, ragi, potatoes, yam, tapioca,
plantains, sugar, jaggery, animal fats, and vegetable oils.
•
Health-giving foods - all vegetables and fruits, especially dark-green leafy
vegetables and orange-coloured vegetables and fruits. (Different kinds of
spinach, pumpkin, orange, papaya, etc.)
•
Body-building foods - beans, soya, groundnuts, peas, eggs, meat, fish, and
milk.
Healthy Foods
Here are some suggestions for getting more vitamins, minerals, and proteins at low
cost:
•
Liver, heart, and kidney are especially high in protein, vitamins, and iron (for
anaemia) and are often cheaper than other meats.
•
Eggs are one of the cheapest and best forms of animal protein. They can be
cooked and given to babies and adults alike.
•
Eggshells that are boiled, washed well, finely ground and mixed with food can
provide needed calcium for pregnant women who develop sore, loose, teeth
or muscle cramps.
•
Cook vegetables, rice, and other foods in small amounts of water. Do not
overcook. Be sure to drink the leftover water or use it for soups or in other
foods (e.g., gravies).
•
Beans, peas, lentils, and legumes (various type of grams, kidney beans, etc.)
are a cheap source of protein. If allowed to sprout before cooking and eating,
they are higher in vitamins. Baby food can be made from beans by cooking
them well, peeling off their skins, and mashing them.
•
Dark-green leafy vegetables have some iron, a lot of vitamin A, and some
protein. The leaves of sweet potatoes, drumsticks, coloccasia (yam),
radishes, beans, peas and pumpkins are very nutritious.
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June 2005
More suggestions for getting vitamins and good nutrition:
J
•
Small, bony fish are also cheaper than meat, especially the dried varieties.
•
Chicken is a good, fairly cheap form of animal protein - especially if the family
raises its own chickens.
•
Cooking in iron pots when cooking beans, greens, and other foods adds iron
to the food.
•
More iron will be available if you also add tomatoes.
Loss of Appetite
Loss of appetite or difficulty in eating can be a problem for the sick person and the
family. The following suggestions maybe useful for the caregiver:
•
Cook what the patient likes.
•
Make special dishes for the patient so that they feel happy and loved.
•
Let the patient eat with family members instead of alone.
•
Give a lot of water and other fluids, especially when the patient is taking
medicines.
•
To supplement a regular diet of nutritious foods, vegetable oil or groundnut
paste can be added to the food.
•
If the patient is tired or weak, serve smaller, more frequent meals instead of a
large meal.
•
Give the person enough time to eat - it might take longer than for others.
•
Serve cooked vegetables. Raw vegetables are not very digestible and can
easily be contaminated.
•
If the patient has nausea or vomiting, preparing the foods in liquid or semi
liquid form may help.
•
If persistent diarrhoea is present, use soft or mashed foods and avoid spicy
food and raw vegetables.
•
Vitamin tablets may also be given.
Food Safety and Hygiene
People with HIV infection get sick more often from food-borne illnesses than other
people. Most of these diseases are caught directly from an infected person, but can
also be got from raw or poorly cooked food, food contaminated by insects, and food
that has been handled by someone who has not practised good hand washing.
Guidelines for safer cooking
•
Keep the home free from faeces.
•
Use a latrine and keep it clean and free from flies.
•
Keep the surroundings clean.
•
Wash clothes, bedding, and surfaces that might have been contaminated with
faeces and urine with hot water and soap.
Personal hygiene
•
Always wash hands with clean water and soap or ashes before, during, and
after preparing food, eating, serving others, and after visiting the toilet.
•
Cover all wounds to prevent contamination of food during preparation and
handling.
•
Use safe, clean water from protected sources. If the water is not from a
protected source, it should be boiled for 20 minutes or filtered.
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June 2005
Hygiene in the kitchen
•
Keep all food preparation surfaces clean. Use clean dishes and utensils to
store, prepare, serve, and eat food.
•
Wash vegetables and fruit with clean water.
•
Cover food to keep flies and dust away.
Keep rubbish in a covered bin and empty regularly or put it in a compost pit, covering
it with soil after each disposal.
Cooking and storage of food
•
Store fresh food in a cool place or refrigerator.
•
Do not store raw food, especially meat, close to cooked food.
•
Avoid storing leftovers unless they can be kept in a cool place or refrigerator.
Always reheat them at a high temperature.
•
Cover and store food in containers away from insects.
•
Throw away any food that has gone bad.
•
Cook food thoroughly, but do not overcook vegetables.
•
Serve food immediately after cooking.
Storage of drinking water
•
Keep drinking water in a covered container that is cleaned daily with hot
water.
•
Do not dip hands or cups into the container.
•
The best container is one with a tap.
Meat, poultry, and fish
•
Cook meat and fish well; meat should have no red juices.
•
Eggs should be hard-boiled. Do not eat soft-boiled eggs, raw eggs, cracked
eggs, or any foods containing raw eggs.
•
Wash utensils and surfaces touched by meat, poultry, or fish with hot water
and soap before preparing other foods.
Note: However careful one is, food-borne infections may happen. If you get
diarrhoea, take available fluids to prevent dehydration, but if you feel very ill with
vomiting and pain, see a health worker without delay.
I NUTRITIOUS FLOUR FOR PORRIDGE (Sathu mav)
j Ingredients:
' Ragi ---------------------200gm (2cups)
! Corn-----------------------200gm (2cups)
Millet --------------------200gm (2cups)
Wheat -------------------200gm (2cups)
Green gram ----------200gm (2cups)
i Split gram ------------200gm (2cups)
Groundnuts (roasted)
200gm (2cups)
I Sesame seeds -------200gm (2cups)
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Preparation:
Clean ragi, corn, millet, and wheat separately. Soak separately in water for 12 hours.
Tie them in separate muslin cloths (very fine cloth) for germination. Sprinkle water on
the pouches every now and then. After 12 hours the grains will sprout. Spread them
and dry them in the shade. Once they are dry, lightly roast them separately.
Clean green gram and roast it.
Clean roasted split gram.
Remove skin from the roasted groundnuts.
Powder all the ingredients with 25gms of cumin seeds, 10gms cardamom, a little
dried ginger, and a little green camphor.
Put in an airtight container and use.
This powder can be used to make a nutritious porridge:
Mix 4 tablespoons of this powder with 1 1/2 cups of water and boil stirring
continuously so that no lumps are formed. Once it boils, leave it on a slow fire for 5
minutes. For salty porridge, sprinkle some salt in the porridge. For sweet porridge add some sugar, jaggery, or honey and some milk and drink it. This porridge is a rich
source of protein and carbohydrate and can be had for breakfast everyday.
Sample menu that can be modified according to regional tastes.
Breakfast (any one of the below):
•
Rava upma or beaten rice upma (green peas, finely cubed carrots, finely
sliced cabbage, and greens can also be added while making the upma)
•
Rice or rava idli or dosai with sambar and/or chutney (Chutneys - coconut /
groundnut / green coriander and curry leaves)
•
Porridge made of the nutritious flour
•
Porridge made of broken wheat (dalia) or rava (suji)
•
Khichdi/pongal with any chutney or curry
•
Ragi, wheat, or rice rotis with chutney or vegetable curry
•
Puris with potato or gram (chana) curry or any other curry
•
Rice/wheat/ragi puttu (steamed flour) with banana/gram curry
In between breakfast and lunch:
•
Buttermilk/bone soup/vegetable soup/fruit juice
•
Dates
Lunch:
•
Rice or chapatti (prepared of wheat, millet, ragi)
•
Dal or sambar
•
Curd
•
Seasonal vegetables, greens (especially drumstick leaves)
•
Meat or fish or soybeans or chana
Teatime:
•
A mixture of sprouts (green gram, chana) with grated carrot and a sprinkle of
lemon juice and salt (avoid when having diarrhoea)
•
A mixture of sprouted millet with coconut and jaggery
•
Dates
Dinner: a repetition of lunch
____________________
______
___
Note: If available, a seasonal fruit, a cup of milk, and an egg should be taken every
day. Small but frequent meals should be taken. (Buy seasonal fruits and vegetables
to cut down on costs)
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[jp Participant Handout
5.1 Nutrition and Food Safety Case Studies
Case study # 1 You visit a person with HIV infection, in his home. He has
diarrhoea. You find the house to be in a mess. There are flies everywhere. Food is
kept uncovered. His wife and children are in dirty clothes. You can guess the reason
for his diarrhoea.
Questions:
•
What advice will you give him and his wife about hygiene?
•
Do you know one of the reasons for diarrhoea is contaminated food?
•
Do you know another reason for diarrhoea is unhygienic conditions?
Points you should cover:
•
Keeping the house and surroundings free of flies
•
Food safety
•
Water safety
•
Personal hygiene
•
Safe cooking
•
Storage of food
•
Storage of water
Case study # 2: Ramu has HIV infection. When he is counselled about proper
nutrition, he feels healthy foods are expensive.
Question: How will you change his mind?
Points you should cover:
• Food groups
• Low-cost healthy foods
• Preparation of Sathu mav
• Balanced diet
• Sample menu
Hint: A rough calculation of the cost of a simple meal can be made to convince the
person that healthy food need not be expensive. Preparation of Sathu mav can be
demonstrated.
Case study # 3: Radha has a low appetite. She is not eating well, and thus losing
weight. She has difficulty eating even the little her mother forces her to eat. Her
mother is worried. What advice will you give her mother?
Questions:
• What food does Radha like?
• What are the foods you give her?
• How many times do you give her food?
Points you should cover:
• Give foods liked by the person
• Small, frequent meals should be given
• Mashed food can be given
• Lots of water should be given
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Sessions 6a through 6e: Management of HIV/AIDS
Symptomsat Home
Time: 4-5 hours
Aim
This session will teach the participants to identify symptoms of the various infections
associated with HIV/AIDS and treat the symptoms at home. They will also be taught
to recognise symptoms that need the help of a doctor for treatment.
Learning objectives
By the end of the session, the participants will be able to:
•
Identify symptoms of the various infections associated with HIV/AIDS
•
Treat the symptoms at home
•
Know when home treatment is not enough and when the person should be
taken to a doctor/health-care provider
Note to facilitator: This is a long session. Depending on the convenience of the
participants, it can be split into 2 or 3 sessions or it can be done continuously with
breaks in between. If you want to do it in 2 sessions, 1 session can be done in the
morning and the other in the afternoon. If you want to do it in 3 sessions, the third
session can be carried over to the next day. The following is an example of how
these could be divided:
Two sessions
Session 1
Session 2
6a: Fever, Diarrhoea, Dehydration,
Nausea and Vomiting, Tiredness and
Weakness
6b: Skin problems
6c: Mouth and Throat Problems
6d: Respiratory problems
6e: Pain, Anxiety and Depression, Mental
Confusion and Dementia
Three sessions
Session 1
Session 2
Session 3
6a: Fever, Diarrhoea,
Dehydration, Nausea and
Vomiting, Tiredness and
Weakness
6b: Skin problems
6c: Mouth and Throat
Problems
6d: Respiratory problems
6e: Pain, Anxiety and
Depression, Mental
Confusion and Dementia
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Session Activities
Activity
Time
(minutes)
Content
Materials
1
Will vary
Discussions of
symptoms and
treatment of various
illnesses associated
with HIV/AIDS
Things that are necessary
for the topics chosen
Flipchart/White board and
markers
Slide(s)
Demonstrations/Roleplays - various
procedures associated
with the care of these
illnesses
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Managing HIV/AIDS Symptoms at Home
Key Points
•
If possible, see a health-care provider as soon as any symptom is noticed
before trying to treat the infection(s) at home
•
Follow the health-care provider's advice carefully
•
Do not discontinue treatment till the full duration is complete
•
Use only safe, time-tested home remedies
•
Always use gloves/plastic bags to cover hands while handling wounds, blood,
and body fluids
•
Medicines and other things (cotton wool, gauze, potassium permanganate
and gentian violet crystals, ORS packets, etc.) should be kept in a safe and
clean place that is away from children and pests
«
Bedpans/commodes should always be clean
Activity 1: Group discussion, Demonstration, and Role-Play
Topic: Symptoms and treatment of various illnesses associated with HIV/AIDS
Instructions:
Step 1
(Time depends on the number of topics taught)
Start the discussion by asking the participants questions such as:
•
What are the types of infections you have come across among family
members and other people with HIV/AIDS known to you?
•
What remedies do you use to treat these infections?
•
When do you take the person to the hospital or health-care provider?
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The infections and the remedies stated for that particular infection should be noted
down one by one by the facilitator on a flipchart.
A health-care provider should preferably facilitate or co-facilitate these sessions. He
or she should add more information about the particular infection when necessary.
Slides will be helpful in showing the participants the symptoms associated with
different infections. If any of the remedies used by them is harmful, the facilitator
should tell the audience the reason for its harmfulness. The importance of seeing a
health-care provider and following his or her advice should also be stressed.
Step 2
After you have finished the discussion about the various symptoms of infections, you
can test their understanding by group work based on the lecture and discussion.
You can divide them into 4 groups and give each group something to role-play:
Group 1 -Taking care of a person with fever and treating a person with itchy skin
Group 2 -Taking care of a person with diarrhoea and dehydration
Group 3 -Cleaning wounds and taking care of a person with respiratory problems
Group 4 -Taking care of a person with mental confusion and dementia and pain
(You can change/add topics according to the participants’ needs.)
Step 3
They can be given 15 minutes to discuss among themselves and another 15 minutes
for role-play.
Step 4
(20 minutes)
After each group presents its role-play, the other participants should discuss:
•
If the treatment was correct
•
If the caregiver was kind and considerate
•
If something more should have been added
Step 5
(20 minutes)
Finally, ask if the participants have any questions and summarise the session with
the help of the slides.
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Reference Material
Managing HIV/AIDS Symptoms at Home
This section deals with the common health problems faced by people with HIV/AIDS
and the likely causes. It also deals with ways in which these illnesses can be
managed at home.
I. Fever
When a person’s body temperature is too high, he or she has a fever. Fever is not a
disease in itself but a sign that something is wrong in the body. Fever may indicate
one of many illnesses.
In people with AIDS, fever often comes and goes. It is difficult to know whether the
fever is a symptom of a treatable infection or whether it is due to the HIV infection
itself.
The cause of fever may include:
•
AIDS-related opportunistic infections such as tuberculosis
•
Malaria
•
HIV infection
How to check the temperature
The simplest and quickest way to check if someone has a fever is to put the back of
one of your hands on the person’s forehead and the back of the other hand on your
forehead. Any moderate to large difference can be made out immediately. If
available, a thermometer can be used to check the temperature. The usual ways of
using the thermometer are in the mouth or under the armpit.
How to use a thermometer
•
Clean the thermometer with soap and water and wipe it dry with a clean cloth
or some cotton.
•
Hold it firmly by the end away from the tip where the bulb is, and turn it slowly
against the light until you see the silver line (a dark line) running down the
middle. If it stops well before the small arrow mark showing the normal body
temperature (at about 37 degrees C) then you can use it straightaway. If not,
shake it with flicks of the wrist - remember to hold it firmly - and check the
silver line again until it stops well before the normal arrow mark.
•
Place the tip well under the armpit and keep the upper arm firmly against the
side of the chest or place the tip under the tongue and ask the person to keep
the mouth firmly closed. (Always place the thermometer under the armpit for
small children as they might bite the thermometer and break it.)
•
Leave it there for about 2 minutes. Remove and read it as shown.
What can be done at home to lower fever?
-
Remove extra clothing and blankets.
Open windows to let fresh air in as breezes help in lowering fever.
*
Provide plenty of fluids. Water, juice, weak tea, or broth.
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•
Cool the skin by taking baths or applying cloths soaked in tepid water to the
chest and forehead, or by just wiping the skin with wet cloth and letting the
water evaporate.
•
Use medicines that reduce fever, such as paracetamol. (Children should be
given a lower dose depending on their weight.)
When should they seek help?
The person should be encouraged to seek help when:
•
Fever is very high.
»
He or she has had fever for more than two days.
•
Fever is accompanied by coughing, diarrhoea and weight loss
•
Fever is accompanied by symptoms such as stiff neck, severe pain, severe
headache, confusion, unconsciousness, yellow colour in the eyes, sudden
severe diarrhoea, or convulsions.
•
She is pregnant or recently had a baby.
II. Diarrhoea
Diarrhoea is very common in people with AIDS. A person has diarrhoea if he or she
has 3 or more watery stools a day, which may be accompanied by abdominal cramps
and vomiting.
The most common causes of diarrhoea in people with HIV infection are:
•
Intestinal infection from food or water that is not clean and fresh.
•
Opportunistic infections related to AIDS.
•
Side effects of some medicines.
Diarrhoea is dangerous because prolonged diarrhoea can cause dehydration and
malnutrition. Dehydration is caused by the loss of large amounts of water and salt
from the body and can be fatal if not treated.
Malnutrition is caused because:
•
Nutrients are lost from the body in the stools.
•
People with diarrhoea usually do not feel hungry.
•
Some people wrongly think that they should not eat when they have
diarrhoea.
Prevention of diarrhoea
•
Drink clean water - strain water using a clean cloth. Bring to a boil and then
continue boiling for another 20 minutes to kill the germs. Store water in clean
containers and keep it covered.
•
Eat clean, safe food - Make sure that all meats are cooked properly. Try to
eat freshly prepared foods and try not to eat from outside if possible.
•
Wash all raw foods well with clean water before cooking. Always cook raw
foods.
When water is muddy and bad, rinse plates and utensils with a solution of potassium
permanganate (commonly known as potash and easily available in the pharmacy) one teaspoon of potash dissolved in one litre of water.
Wash your hands with soap and water:
After using the latrine
*
Before preparing food or drink for yourself or for others
•
Before and after eating
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How to treat diarrhoea at home
•
Drink as much fluid as possible (at least 17? times more than what you
normally drink) to avoid dehydration
•
After each loose stool, drink at least a cupful (children % to 7i cup) of:
o
•
ORS (from readymade packet)
o
Broth or rice water (salted)
o
Salted buttermilk
Clean water, tender coconut water, and unsweetened fresh fruit juice. AVOID
sweetened fruit drinks, sweetened tea. coffee, and soft drinks.
•
Breast-fed infants should continue to be breast-fed (at least every 3 hours)
•
The sick person should drink even if not thirsty. Children, especially, should
be encouraged to drink.
•
Eat small amounts of nutritious and easily digestible food (bland and soft
food). Some examples are bananas, plain rice, or plain biscuits.
•
Avoid high-fibre diets, e.g., raw vegetables and unpeeled fruits
Home-made ORS
With sugar and salt:
A fistful (2 tablespoons) of sugar and a big pinch (% teaspoon) of salt mixed with a
litre of boiled and cooled clean water.
With powdered cereal and salt:
In one litre of boiled and cooled water add half a teaspoon of salt and 8 heaped
teaspoons (2 handfuls) of powdered cereal (powdered rice is best. Or use finely
ground maize, wheat flour, sorghum, or cooked and mashed potatoes). Boil for 5 to 7
minutes to form a liquid porridge. Cool the drink quickly and start giving to the sick
person.
Caution: Taste the drink each time before you give it to be sure it is not spoiled.
Cereal drinks can spoil in a few hours in hot weather. Throw out the leftover ORS
after 6 hours of preparing it.
Ready-made ORS packets should be dissolved in cooled and previously boiled water
in the amount of water indicated on the packet. Instructions on the packet should be
followed so that the ORS is neither too strong nor too dilute, as this might cause
more problems.
Other problems that may come with diarrhoea:
Prolonged diarrhoea can cause skin irritation in the rectal area. Then you must:
•
Clean the rectal area gently with clean water after each bowel movement and
pat dry and apply lotion or vegetable oil.
•
Relax during bowel movements and try not to strain or push too hard
•
Sit in warm water containing a pinch of salt 3 or 4 times a day.
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Babies:
For babies in nappies who have diarrhoea, the buttock area will need special care.
The caregiver should:
•
Leave the baby’s bottom exposed to air as much as possible.
•
Soak the baby’s bottom with warm water between nappy changes.
•
Remove or change nappies as soon as they are wet or soiled.
•
Avoid wiping the buttock area — instead squeeze water from a washcloth or
pour water over the area and then pat dry.
•
Apply an ointment like Boroline to form a protective layer.
Remember:
Always wash hands afterwards
When to seek help
If the person:
•
Is very thirsty
•
Has a fever
•
Cannot eat or drink properly
•
Has diarrhoea for more than 3 days
•
Is vomiting and cannot keep down fluids
•
Has blood in the stools
•
Has more than 4 stools in 2 hours
•
Is vomiting and confused
To help someone with diarrhoea who cannot get out of bed:
Use a bedpan or any suitable plastic or metal container, which can be easily slipped
under the person in bed. Empty the contents frequently. Do not use this container for
any other purpose once it has been used as a bedpan. Change wet or soiled bedding
and clothes immediately to prevent damage to the skin.
The soiled clothes must be kept separate. By holding the unstained part of the cloth,
rinse out stains (preferably with bleach solution) and then wash it with soap and
water and dry in the sun.
Remember:
Always use gloves or a plastic bag over hands while handling soiled or wet clothes.
III. Dehydration
Dehydration means the loss of water and salts. Just like a plant that is not watered,
we will dry out, get weak, and slowly die if we don’t have enough water in our bodies.
People with advanced HIV disease are in danger of becoming dehydrated because
they lose water through diarrhoea, vomiting, and sometimes severe sweating. At the
same time, patients may have problems getting enough fluids into their bodies
because of nausea, sore mouths, fear of further diarrhoea or vomiting, depression,
and weakness.
Dehydration develops more quickly and is most dangerous in small children.
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Signs of dehydration:
•
Thirst is often a first, early sign of dehydration
•
Dark-coloured urine
•
Weakness
•
Loss of elasticity (stretchiness) of the skin
•
Sunken eyes
•
Confusion
.
Fits
•
Less-frequent urination (the body fights dehydration by keeping water in the
body as long as possible) or absence of urination
•
Sagging-in of the “soft spot” in infants
What to do at home
Give the dehydrated person sips of ORS every 5 minutes, day and night, until he
begins to urinate normally. A big person needs 3 or more litres a day. A small child
usually needs at least 1 litre a day, or 1 glass for each watery stool. Keep giving the
drink often in small sips, even if the person vomits. Not all of the drink will be
vomited.
Treat dehydration the same way as diarrhoea.
When to seek help
If dehydration gets worse or the person is feverish, confused, or has fits, seek
medical help immediately.
IV. Nausea and vomiting
Nausea and vomiting may be caused by:
•
•
•
•
•
Medicines
Infections
HIV infection
A problem with the stomach or intestines
Kaposi's sarcoma in the intestines
In some people with AIDS, nausea and vomiting are present for a short while and
goes away on their own or after treatment. In others they are long-lasting and
become a part of life.
What to do at home
Nausea
• Seek locally available foods that the patient likes that cause less nausea
• Offer snacks the patient likes throughout the day to keep the stomach from
being empty
• Don't give liquids with meals - offer 1 hour before or after the meal
• Avoid serving sweet, greasy, or acidic foods
• Encourage the patient not to lie down for a while after eating
• If possible, avoid cooking smells and cooking near the patient
• Make the person smell a lime (helps to lessen nausea)
• Ginger tea (tea boiled with crushed ginger) helps reduce nausea
• Take medicine prescribed by health-care worker.
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Vomiting
• If the patient vomits during the meal, have them rinse their mouth out and
wait 15 to 20 minutes before trying to eat again.
• Offer a lot of clear fluids (not milk) to replace those that were lost with
vomiting
If vomiting is severe the person should:
•
•
•
•
Not eat any food or drink any fluids for 1 or 2 hours
Then gradually start drinking water, ORS, weak tea, or other clear liquids or
suck on ice made of clean water
Then increase the amount of fluids and should force themselves to drink even
if not thirsty to replace what they lost
As the nausea decreases, small quantities of dry food like rice, bread, or
roasted potatoes should be eaten frequently.
Remember:
•
The mouth should be rinsed frequently and the tongue and gums cleaned
with a soft toothbrush or a cloth to remove the foul taste caused by vomiting.
The mouth can be rinsed with lemon water.
•
Ventilating the patient’s room may make a person feel better and less
nauseated.
•
Although HIV is not present in vomit, it is still advisable to wear gloves/plastic
bags when cleaning it up.
When to seek help
•
•
•
•
•
If vomiting occurs repeatedly and fluids cannot be kept down - in such cases
the sick person is at risk of becoming severely dehydrated.
If regular vomiting lasts more than 24 hours, particularly if it is accompanied
by pain in the abdomen.
If the person has fever in addition to the vomiting.
If the sick person is vomiting violently, especially if the vomit is dark-green,
brown or smells like faeces.
If the vomit contains blood.
\/. Tiredness and weakness
AIDS can often make a person feel very tired and weak, particularly in the last stages
of the illness. This can have many causes and to some extent is unavoidable. People
should do what they can to keep their strength up and not take on activities that
could be dangerous to them (like walking too far).
Weakness and fatigue in a person with HIV/AIDS could be a result of some or all of
the following:
•
HIV infection or HIV-related illnesses (particularly respiratory illnesses)
•
Poor nutrition
•
Depression
•
Anaemia
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What to do at home
If no treatable infection or other problem is found, it is important for people to learn
how to adjust to their limited ability. The following advice may be of help:
•
Let the sick person do the chores he or she can so that he or she remains
involved with the activities in the family.
•
Rest should be taken as often as needed.
•
Activities should be made easier - sitting rather than standing to bathe or
cook; using a bedpan or a suitable container rather than going to the toilet;
buying or making a walker, cane, or wheelchair.
•
It should be made known to the sick person that family members are willing to
help whenever it is needed. They should not hesitate to ask for help.
If the person is too weak to get out of bed:
•
Move the sick person’s arms and legs gently several times a day
•
Provide a bedpan or suitable container every few hours, or more often if
needed, to allow the person tg empty their bowels or bladder
•
The caregiver should help with his or her personal hygiene - bathing, going to
the toilet, changing position in bed, eating, and drinking.
Though weak, the person should be kept involved in the activities within the home to
make them feel useful.
If the person is weak but moving about, safety precautions can be very important.
Some of the safety precautions to be taken are:
•
Move loose or dangerous objects out of the way.
•
Assist the person when walking or provide a walking stick or cane.
•
Try not to leave the person alone for long periods.
When to seek help
•
If the sick person suddenly becomes very weak, particularly if accompanied
by high fever, headache, or confusion.
VI. Common Skin Problems
The following skin problems are common in people with AIDS and unfortunately tend
to be chronic. They can be controlled with the right treatment, but are rarely
completely cured.
•
Rash
•
Itching skin
•
Painful sores on the skin
»
Increased dryness of the skin
•
Boils and abscesses
The most common causes of some of these problems include:
•
Yeast infections (thrush, candidiasis)
•
Other fungal infections (e.g., ringworm)
»
Bacterial infections
•
Shingles (herpes zoster)
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•
Infected scabies
•
Poor hygiene
•
Allergic reaction to medicines; skin irritants
•
Bed sores
•
Kaposi’s sarcoma
Itchy skin
Itchy skin is very common and can be due to infections.
What to do at home
Cleaning the skin frequently with soap and water and keeping it dry between washing
will help prevent common problems.
Almost all skin problems involve the sensation of itching. Scratching the itching skin
with fingernails can make things worse, either by breaking the skin or by introducing
or spreading infection. This can be avoided by keeping nails short. Try to encourage
people not to scratch any type of skin lesion or sore. However, rubbing with the flat of
the fingers or gentle slapping can give some relief.
The sick person can get some relief by trying any of the following:
•
Cooling the skin with water (water boiled with neem leaves and cooled) or
fanning it.
•
Applying lotions such as calamine that are soothing and prevent the skin from
becoming too dry.
•
Not letting the skin get hot and not applying warmth to itching areas.
•
Rubbing cucumber slices gently over the affected parts.
•
Avoiding scratching, which causes more itching and sometimes infection.
•
Cutting fingernails short and keeping them clean to avoid infection.
•
Putting one tablespoon of vegetable oil (coconut oil, sesame oil) in 5 litres of
water when washing the sick person.
•
Applying oil or glycerine after bathing.
•
Taking the medicine prescribed by the health-care provider. These
medications may have to be continued even after symptoms disappear.
When to seek help
•
If skin problem persists or becomes worse.
•
If the skin becomes infected and starts oozing.
VII. Wounds
What is a wound?
Closed wound: A closed wound is a red. raised painful lump in the skin. They are
most common in the groin, buttocks, armpits, back, and upper legs. They may
appear as one single lump or in groups of lumps.
How can I care for wounds?
Use warm salt-water compresses over the area for 20 minutes 4 times a day.
The warmth of the compresses will help the boil or abscess to "mature" or to form
and harden and drain its contents.
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Use the warm compresses as explained below:
•
Boil water with salt (1 teaspoon of salt in one litre of clean water) and allow it
to cool until you can just hold your hand in it.
•
Fold a clean cloth so that it is slightly larger than the area to be treated. Wet
the cloth in the hot water and squeeze out the extra water.
•
Put the cloth over the affected skin.
•
Cover the skin with a sheet of thin plastic.
•
Keep the affected part covered and raised.
•
When the cloth starts to cool, put the cloth back in the hot water and repeat
the process.
If the wound is on the legs or feet, raise the affected area as high and as often as
possible. Walk when possible.
Once the liquid in the boil drains, it becomes an open wound and can become
infected. Keep the wound clean to avoid infection.
A wound is infected if:
•
It becomes red, swollen, hot, and painful
•
It has whitish, yellow fluid draining from or visible under the skin
•
It begins to smell bad
If the wound is infected:
You should clean and wash the wound by doing the following:
•
A salt wash of one spoonful of salt in a cupful of clean water (water that has
been boiled) or gentian violet solution (one teaspoonful of GV crystals in half
a litre or clean water)
•
Wash around the edge of the wound first, then wash from the centre out to
the edges using separate little pieces of clean cloth for each wipe if possible.
•
Cover the area with a clean piece of cloth and bandage if the wound has
yellow or white fluid or blood. If the wound is dry, do not put a cloth cover on it
since the wound will heal faster this way.
•
If the wound is on a leg or foot, keep the limb raised as much as possible.
•
To avoid infecting yourself and others in the household, you should use
gloves, plastic bags, or a leaf when handling any cloth that has touched the
wound.
People who are not immunised against tetanus should seek medical help
immediately if they are wounded or develop open sores.
Tips on Covering Wounds:
•
Never apply a dressing tightly.
•
Make sure dressing is clean.
•
Change the dressing at least once a day. Be sure to look for signs of
infection.
«
After changing the dressing, rinse the soiled cloth and bandages in water and
soap and put them in the SUN to dry or put them in BOILING water for a short
period and hang them to dry. If the dressings are not to be reused, always
dispose of them properly by burning them or burying them.
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When should I seek help?
•
When the wounds become infected for a long period of time.
•
Fever occurs.
•
There is a red line above the wound.
•
The lymph nodes under the skin in the neck, armpits, or groin become
swollen and tender.
These symptoms show that the infection is spreading to other parts of the body.
(Treatment of skin infections should be continued even after symptoms disappear.
Follow the doctor’s instructions).
VHI. Bedsores
Bedsores are caused by a rubbing away of the skin from lying in bed for a long time.
These chronic open sores appear in people who are so ill that they cannot roll over in
bed. It is especially a problem for those who are thin and weak. The sores form over
the bony parts of the body where the skin is pressed against the bedding. They most
often occur on the buttocks, back, hips, elbows, and feet.
How can I prevent bedsores?
•
Get out of bed as much as possible.
•
Change position every 2 hours from one side onto the back; from the back
onto the other side, in order to prevent prolonged pressure and lack of
circulation to any one area of the body.
•
Put cushions or a soft, rolled-up cloth rolled up placed under against the
shoulder, back, or below and between the knees.
•
Sheets should be hung to air daily and changed each time the bedding is
soiled with urine, vomit, or sweat. Try to always straighten the bedding, as
wrinkles can hurt the skin.
A bedridden child who has a chronic illness should be held on someone’s lap.
(Note: To change the bed sheets for a person who cannot be lifted from the bed, turn
him over to one side and push half the sheet in from the other side; then turn him
back and pull out the other half from underneath. Make sure there are no creases or
wrinkles).
How can I treat bed sores?
•
Gently wash all the sores with clean water mixed with a little salt or antiseptic
solution (1 part garlic juice in 3 parts water boiled with neem leaves - home
made antiseptic).
•
Protect the sores with sterile gauze.
•
A paste made from neem leaves can also be applied to the sores to help
healing.
-
If the sores are not deep, leave the wound open to the air.
When to seek help
•
If pus, redness, or fever accompanies the sores.
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If the wound has a bad smell, if brown or grey liquid oozes out, or if the skin
around it turns and forms air bubbles or blisters — this could be a very
dangerous infection.
If there is severe pain from the sores and the person is unable to sleep or
function during the day.
IX. Scabies
Scabies is a disease caused by a type of tick or bug that cannot be easily seen. The
disease spreads through direct physical contact with the infected person, through
clothing and bedding.
Symptoms:
•
Tiny bumps all over the body, but most commonly between the fingers,
around the waist, and on the penis and scrotum in males, and around the
vaginal opening in females.
•
Itching
Itching: Scratching can cause the bumps to get infected and form sores with pus.
Infection causes fever and areas under the armpit and groin to become swollen and
painful. The disease spreads through direct physical contact with the infected person
and through clothing and bedding. Scabies is a very common illness that can be
easily treated at home.
What can I do at home?
•
If one person in the family has scabies, the whole family should be treated,
even if they do not have symptoms.
•
Towels and soap should be kept separate. Good hygiene is very important.
•
Use medication as prescribed by the doctor.
•
The whole body should be washed and scrubbed with soap and Gamma
Benzene Hexachloride lotion (available at the pharmacy or community health
centre) should be applied all over the body except the face and left on the
body overnight. Fresh clothes should be worn.
•
Next morning, no bath should be taken and the medicine should again be
applied all over the body. The same thing should be done in the evening.
•
The second morning, a bath should be taken and fresh clean clothes should
be worn.
•
The used clothes and the towels should be boiled, washed, and put in the
sun. If the bedding cannot be washed, it should be put in the sun. This action
will kill the insect.
•
Treat the infected sores as explained in treatment of wounds that are
infected and follow the advice on washing or cleaning an infected wound.
When to seek help
•
If there is severe itching
•
If the sores are infected
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X. Shingles (Herpes zoster)
Shingles is a viral infection. It is very common in people with AIDS and it may be one
of the first symptoms of HIV infection or AIDS.
Shingles begins as painful rash with small blisters, usually on the face, limbs, or
trunk. Shingles on the face may affect the eyes, causing pain and blurred vision. The
blisters often join together, resulting in a large eroded or broken area. There may be
in an intense feeling in the affected area. Healing takes place over several weeks
and leaves discoloured areas on the skin.
What to do at home?
•
Apply calamine lotion twice daily to relieve pain and itching, which promotes
healing.
•
Keep the area dry and if possible; do not let clothes rub on them.
•
Wear clean, loose-fitting, cotton clothing.
•
Use paracetamol to relieve pain, although sometimes the pain may be so
severe that stronger medicine may be needed.
•
Use the medication as prescribed by the doctor.
•
Prevent the skin from becoming infected by bathing the sores with warm salt
water four times a day or applying gentian violet solution once a day.
•
Watch to make sure the sores do not become infected. If they do, they will
turn red or have liquid inside them.
The pain usually stops after 3 to 4 days, but some people may develop a persistent
pain and scarring over the affected area.
Tip: Boil neem leaves with water and use in bathing for general skin problems.
When to seek help
•
If pus, redness or fever accompanies the sores.
•
If there is severe pain from the shingles, and the person is unable to sleep or
function during the day.
•
If shingles affects the eyes.
•
If the person with shingles does not respond to treatment.
XI. Mouth and Throat Problems
Soreness in the mouth, usually accompanied by white patches on the tongue, is a
common symptom in people with AIDS. Sometimes it may progress into the throat
and oesophagus, causing painful swallowing, thereby interfering with eating and
drinking. Other associated problems are blisters and sores on the lips, and dental
problems.
Oral Candidiasis (Thrush)
Thrush is a fungal infection that causes small white patches on the inside of the
mouth and tongue. If the white patches scrape off with a brush or with a fingernail it
is probably thrush. If they do not, it may be another condition called hairy leukoplakia.
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Someone with Oral Candidiasis should:
•
Gently scrub the tongue and gums with a soft toothbrush at least 3 or 4 times
a day, then rinse the mouth with salt water or lemon water or guava leaf juice.
•
Suck a lemon if it is not too painful - the acid of the lemon slows down the
growth of the fungus.
•
Chew garlic or eat curd.
•
Apply gentian violet solution (1 teaspoonful of gentian violet crystals dissolved
in a half litre of clean water).
•
Take medication as prescribed by the doctor.
Hairy leukoplakia
Hairy leukoplakia may look like thrush but it does not cause pain nor can it be
scrubbed off the tongue or gums. It should not be confused with thrush, as it does
not need any specific treatment. It does not interfere with the ability to eat or with a
person’s general comfort.
Herpes simplex sores
These are painful blisters or ulcers on the lips, which may appear after a fever. In
people with AIDS these sores may appear without a fever and may last a long time.
Gentian violet solution can be applied to the herpes sores on the lips and mouth,
which will help in preventing the sores from getting infected.
Dental problems
Many people with AIDS suffer from inflammation of the gums, tooth abscesses, and
infection. So people should be encouraged to make regular visits to the dentist when
possible, and be particularly careful about oral hygiene.
What can be done at home?
Poor nutrition can cause problems in the mouth and can make existing problems
worse. Encourage people to eat a healthy diet or take vitamin supplements.
To help prevent problems in the mouth and throat:
•
The mouth should be rinsed with warm salt water (half a teaspoonful of salt in
a cupful of water) or with a mouthwash solution (lemon water can also be
used) after eating and between meals. The wash should be swished gently in
the mouth then spit out (if swallowed, it may upset the stomach and cause
nausea).
•
Thorough cleaning of the teeth and gums is important, preferably after each
meal.
•
Brush the teeth and clean between the teeth to remove food particles.
•
If someone does not have a toothbrush, they can use a tooth-cleaning stick (a
neem twig)
•
They can also tie a piece of towel around the end of a stick and use it as a
toothbrush.
•
If toothpaste is not available, a tooth-cleaning powder can be made by mixing
salt and bicarbonate of soda (or ashes) in equal amounts. To make it stick,
the brush should be wetted before being put in the powder. This mixture
works just as well as commercially available toothpaste for cleaning teeth.
•
In case of toothaches, a pain reliever like paracetamol can be taken. Chewing
cloves may also help.
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Protective foods that are rich in vitamins, especially eggs. meat, beans, dark
green vegetables, and fruits like oranges, lemons, and tomatoes, should be
eaten. Sweet, sticky, and stringy foods that get stuck between the teeth
should be avoided.
When to seek help
•
•
•
•
If the sick person is unable to drink or is unable to swallow properly
If there are symptoms of oesophageal thrush, such as burning pain in the
chest or a deep pain when swallowing
Smelly mouth and persistent sores
If tooth infection is severe with fever, swelling, pus, etc.
Mouth ulcers
Mouth ulcers are usually seen inside the lips and the inside of the cheeks. They
cause redness in the area and are visible as tiny pustules.
What can be done at home?
•
Gentian violet solution can be used as a paint.
•
B-complex tablets and Lacto bacilli tablets should be taken (easily available
at the pharmacy).
When to seek help
•
If the ulcers do not get better
•
If it is very painful and the person finds it difficult to eat
General hints for dealing with a sore mouth:
\
•
Eat soft foods rather than hard or crunchy foods
•
Eat bland foods
•
Use a straw for liquids and soups. This may help when taking in the food
needed while preventing it from touching the sore areas.
•
Cold foods, drinks, or ice, if available, may help numb the mouth and prevent
discomfort
•
Remove bits of food stuck in the mouth with cotton wool, gauze, or soft cloth
soaked in salt water
Home remedy
• Chew guava leaves before eating. The leaves have pectin and this coats the
ulcer and makes it less painful.
Sore throat:
Most of the time sore throat begins with a cold. The throat may be red and may hurt
when swallowing.
What to do at home
• Gargle with warm salt water (1 teaspoon salt in a glass of warm water)
»
Take paracetamol
When to seek help
• If pain and fever come on suddenly or continue for more than 3 days.
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XII. Respiratory problems
Respiratory problems, particularly lung infections, are common in people with AIDS
and can be serious. The most common symptoms are chronic cough, chest pain,
shortness of breath, and increased production of mucus or sputum, a thick liquid in
the lungs.
The most common causes of respiratory problems include:
•
Colds and flu
•
Bronchitis
•
Pneumonia
•
Tuberculosis
•
Heart problems
What can be done at home?
•
Keep the person active by making him or her walk around, turn in bed, and sit
up. This encourages the lungs to drain.
•
It is helpful to massage or gently pat the person on the back of the chest over
the lungs. This is particularly good for young children.
•
If there is pain in the chest or ribs during coughing, a pillow or hand should be
held tightly over the area that hurts while coughing. This helps make the
cough less painful.
•
Warm compresses held to the area where there is maximum discomfort can
be soothing. Very mild pain-reducing medicines (crocin, disprin, paracetamol)
can be taken.
•
During the day it is helpful to cough and clear the lungs at least 4 times a day.
Coughing may cause discomfort but it is an important way to clear the lungs
of the accumulated mucus and disease-causing bacteria.
•
Place pillows behind the patient so that he or she can sit up. This eases
breathing.
Some tips to help loosen the mucus and allow it to come out
DRINK LOTS OF WATER! This works really well to get the mucus to loosen up.
Sit down on a chair with a bucket of hot steaming water at your feet. Place a sheet or
towel over your head and cover the bucket so that you can inhale the vapours as
they rise. Breathe the vapours deeply for 15 minutes. Repeat this several times in a
day. (Tulsi leaves or eucalyptus leaves can be added to the hot water.)
Home remedies
•
Soothe the throat by sipping warm tea with sugar or honey and crushed
ginger
•
Home-made cough syrup - onion juice +- ginger juice + juice of tulsi leaves
mixed with honey or sugar crystals.
•
For children, add a tsp of turmeric powder and a pinch of caraway seeds
(ajwain - omum) to a glassful of boiling water. A third of this sweetened with
honey or sugar can be given 3 times a day.
When there is difficulty in breathing:
Help the sick person into the position that eases breathing; usually sitting is
the best.
•
Leaning slightly forward and resting arms on a table may help.
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•
Use extra pillows and back support.
•
Open windows to allow in fresh air.
•
If it is hot. you may fan with a newspaper or clean cloth.
•
In children, clear the nose if it is congested with a thin, moist cloth.
When to seek help
•
If there is an onset of fever or a change in the regular fever pattern of the sick
person
•
If there is blood in the sputum
•
A sudden or rapid worsening in their ability to breathe or catch their breath
after normal activity
•
A change in the colour of their sputum from clear to grey, yellow, or green
•
Pain in the chest
Remember:
•
The bacteria or infectious agents in the sick person’s sputum can be passed
on to other people through the air, especially when coughing. When someone
is coughing, they should always cover their mouth with their hand or with a
cloth that can be cleaned or disposed of.
•
All homes and other places where people meet should be ventilated. Make
sure there is a way in and a way out for fresh air.
•
A constant cough can be very tiring and interfere with a person’s rest. If
coughing keeps someone from being able to sleep at night, they should get a
cough suppressant from the doctor so that they can get enough rest.
•
Pain in the chest without signs of infection and difficulty in breathing are
common problems in people with AIDS. Very often the cause is not known. It
is important to do things to help relieve the pain so that they can be helped in
their efforts to keep active, moving, and coughing.
•
If a lung infection with cough is present, it is important that plenty of fluids are
drunk; first, to replace the extra fluids lost through the lungs by rapid
breathing and, second, to help keep the mucus in the lungs from becoming
too dry and sticky and more difficult to cough out. Children should be
encouraged to drink more fluids by increasing the frequency, giving additional
fluids by spoon or cup.
XIII. HIV /AIDS Related Pain
For some people in the later stages of AIDS, pain becomes part of daily life. For
others it is only occasional and easily controlled.
Kinds of pain:
Acute pain is sharp and intense. It occurs in one specific area. Signs of acute pain:
•
Restlessness or agitation
•
Fast breathing
•
Moaning, crying or screaming
•
Rubbing, cradling or guarding the place that hurts
•
Tense muscles or fear of any movement
•
Sweating
•
Facial grimaces
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Chronic pain is usually the result of prolonged illness and is dull and aching and
often can’t be recognised as originating from any particular spot. Such pain can stay
constant and can leave a person so weak that eating and sleeping or walking
become intolerable. Signs of chronic pain:
•
Frustration
•
Anxiety
•
Decreased appetite
•
Depression
•
Irritability
•
Suicidal thoughts
r
Some people tolerate pain better than others, but while caring for someone with a
long illness, one should never assume that the person does not experience pain,
even if it is not expressed. Pain can be caused by:
•
Immobility
•
Infection, such as herpes zoster
•
Swelling of the legs and arms caused by poor circulation brought on by
problems with the heart or Kaposi’s sarcoma
•
Headache alone or associated with meningitis
•
Nerve problems, including pain with or without weakness.
•
Feeling depressed or anxious may increase the sense of being in physical
pain.
•
Side effects of medicines
What to do at home
•
To control and relieve the pain, people will need to know that pain is also
influenced by the person’s emotional state. Pain can be frightening. The sick
person may need extra reassurance and care. She or he should be given a
chance to talk about the pain.
•
People can take an active role in controlling their pain by:
o
o
o
o
Learning deep and regular breathing techniques, which may help
them relax.
Learning to deal with the pain, through distraction, e.g.
remembering pleasant places and events.
Taking medicines for pain according to an organised schedule.
Engaging in physical activity or receiving a gentle massage.
•
A person may experience a strong burning sensation, particularly in the
hands or feet, which may be due to nerve problems. This type of pain is made
worse by extremes of temperature, touch (even bed sheets or clothing) and
dryness.
•
Putting the hands and feet in bearably warm water sometimes relieves the
pain. If the skin seems to be sensitive, plan things so that all the care and
activities that require touching are done at the same time, to allow periods of
rest in between. The sick person's bed can be lined with soft blankets or
cushions.
■»
If a person experiences any swelling, they should raise their legs or swollen
parts on pillows, or raise the foot of the bed on blocks. They should also keep
changing their body position.
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•
Treatment for pain of all types may include mild medicines for pain, which are
commonly used at home, such as paracetamol or rubbing Vicks Vaporub or
Amritanjan Balm over the area (for headaches). It is important that the sick
person take the mild pain medicines regularly, at least every 8 hours, if the
problem is long-lasting or chronic.
Some more advice for those caring for people with AIDS to help to calm them:
•
Talk slowly to the sick person, and use gentle tones.
•
Avoid using bright lights.
•
It is also helpful to talk with the person, and to provide comfort and distraction
from the pain, by:
Playing favourite music quietly.
o
•
o
Reading aloud or telling stories.
o
Applying a cool cloth on the forehead, or giving a massage.
o
Asking what relieves the pain and then doing it.
Some people like to have the painful area wrapped in cloth or a bandage.
When someone lifts a child who is in pain, the palms of the hand should be
used rather than the fingertips (which can sometimes feel like a pinch).
When you should seek help?
•
If the pain becomes unbearable or is associated with new symptoms such as
headache or weakness.
•
If the pain greatly affects movement.
•
If there is a sudden or recent occurrence of pain in the hands or feet.
•
If there is persistent headache lasting more than 2 weeks, a severe headache
that is getting rapidly worse and is not relieved by the usual ways of dealing
with pain, a headache associated with vomiting, or a headache that affects
the sick person's ability to think or move.
XIV. Anxiety and Depression
Anxiety is an uncomfortable feeling of tension or dread. HIV infection brings the
infected person face to face with many uncertainties that cause anxiety. This is
normal, but when these feelings are very intense or last a long time, so that normal
daily activities are interrupted, they are considered abnormal.
Anxiety can cause severe physical symptoms, and may lead people to believe that
they are quite ill. These symptoms may often be difficult to make out from those
caused by infections, or side effects of medication or malnutrition.
Some physical and mental symptoms of anxiety:
»
Lack of appetite
•
Sweating
•
Inability to concentrate
-
Shortness of breath
-
Tingling sensations
-
Shaking
•
Feeling faint
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•
Feelings of worry
»
Inability to sleep
•
Feeling jumpy
What to do at home?
•
Talk calmly to the anxious person, and use gentle tones
•
Avoid bright lights, loud sounds, or stimulating activities.
•
Provide comfort and distraction by:
o
•
Playing favourite music quietly
o
Reading aloud or telling stories
o
Applying a cool cloth on the forehead, or giving a massage
Use relaxation therapy - meditation, yoga, etc.
Depression
Feeling depressed occurs when a person turns his anger or guilt inward. An HIVinfected person experiences many losses in a short period of time - loss of health,
loss of physical beauty, loss of job or ability to function in the community. This makes
him or her unhappy. The symptoms of depression are:
•
A feeling of hopelessness
•
Feeling tired and generally without energy
•
Inability to find pleasure in anything
•
Irritability
•
Inability to concentrate
•
Inability to get enough sleep
•
Eating too much or being unable to eat
9
What to do at home
•
Encourage the patient to talk without being patronising about it.
•
Elderly people in the community can be of great help.
•
It may be helpful if someone else with a similar problem who has adjusted to
his or her life speaks to the sick person.
•
Do things at home together that would be relaxing physically and mentally playing a musical instrument, playing cards, etc.
•
Involve the ill person in planning for the daily care activities and decision
making as much as possible
•
Using alcohol and other drugs should be discouraged.
•
Some medicines can be useful but should be taken under supervision.
■»
Communication is the key to care.
When to seek help
•
If the family or patient believes that the anxiety or depression is severe
enough that the patient may commit suicide or otherwise harm himself or
herself or someone else.
»
If there is prolonged disruption in the sick person's ability to function such as
in sleeping, eating, or going about their daily life.
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XV. Mental confusion and dementia
It is very common for people with AIDS to have some kind of mental confusion and
dementia. This may be caused by infection of the brain with HIV. The mental
changes may be barely noticeable or they may become a serious disability.
People with AIDS may describe feeling “dulled’ or “slow” in their thinking. It is usually
the family that is the first to notice the changes.
These problems often start in a mild, barely noticeable way but may gradually
worsen over time. It is not possible to predict whether the symptoms will become
severe.
The mental changes may include difficulty in one of the following areas:
•
The ability to think clearly: This may be noticed as a problem in concentrating,
and losing track of conversations or tasks.
•
Behaviour: The person may become irritable, disinterested or unpredictable.
•
Strength or coordination: The person may start dropping things more often,
falling, or may develop slowness in movements or shakiness.
What to do at home
A person who has a sudden change in thinking, behaviour, or ability to move should
seek help. Some of the sudden mental changes may be treatable and the person will
recover. However, if such changes are allowed to continue, they may contribute to
the rate of mental deterioration.
There is no specific treatment for symptoms of mental confusion. People must learn
to live with them and provide a safe environment for the sick person.
To prevent accidents in the home, people should:
•
Pay attention to open fires or boiling water.
•
Provide canes or walkers for people who are weak or off balance.
•
Remove loose and potentially dangerous objects, like rugs. Keep walkways
clear.
•
Avoid rearranging furniture.
•
Store poisonous or toxic substance safely out of reach.
•
Keep medicines out of reach and only give them according to the prescribed
schedule.
•
Store sharp objects like knives, scissors, razors, and saws. Try not to leave
the sick person alone and unattended for long periods.
To help make the confused person feel better:
•
Try to interpret the feelings the person is trying to express rather than just the
words.
•
Give the person a lot of time to respond to questions, directions, or
conversations.
•
Use a low-pitched tone of voice. Provide reassurance.
Ask questions that can be answered “yes” or “no.”
-
Talk about the distant past; the person's memory of events that happened
long ago may be good and this will be pleasurable.
•
Keep a calm manner by speaking softly.
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To help a confused person who is upset or angry feel comforted, you can try to
distract them with the following methods:
•
•
•
•
Change the subject, provide music, or switch on the radio.
Give the person an easy task, such as folding clothes.
Leave the room for a few minutes; the person may forget why he or she is
angry.
Keep calm and do not try to challenge or “reason with” the confused person.
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Session 7: Conditions that Need Special Attention TB and STIs
Time: 1 hour 45 minutes
Aim
This session will teach the participants to recognise the symptoms of TB and STIs
and differentiate between facts and myths about these diseases.
Learning Objectives:
At the end of the session the participants will have:
•
The knowledge needed to recognise a person with tuberculosis (TB) so that
they can refer them to a health facility.
•
The knowledge needed to recognise a person with sexually transmitted
infections (STIs) so that they can refer them to a health facility.
Session Activities
Activity Time
(minutes)
Content
Materials
Slide(s)
1
40
Group Discussion
about the
symptoms and
treatment of TB
Flipcharts/whiteboard and
markers
4- 13
2
40
Group Discussion
about the
symptoms and
treatment of STIs
Flipcharts/whiteboard and
markers
15-20
3
10
Small group game
Flash cards, Flip
chart/whiteboard with markers
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Conditions that Need Special Attention: TB and STIs
Key Points
•
Home care alone is not enough in treating TB and STIs.
•
TB is a contagious disease that can be cured by the right medication.
•
Prompt, complete treatment is the best way to prevent further infection.
•
Medicines for tuberculosis are given free in government tuberculosis
hospitals/clinics.
•
The medicines should be taken for the duration specified by the doctor.
•
TB accelerates the progression of HIV to AIDS.
•
Eating well at regular times is as vital to recovery as medicines.
•
Medicines should not be stopped because of side effects, consult a doctor
immediately.
•
STIs are infections that are transferred from one person to another during a
sexual act.
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June 2005
•
•
If STIs are detected and treated early, they do not cause serious problems.
A person who is HIV-positive and also has an STI may progress to AIDS
more quickly.
Activity 1: Group discussion (40 minutes)
Topic: Symptoms and treatment of TB
Instructions:
Start the session by asking the participants:
• Do you know the meaning of contagious disease?
• Can you give the names of the diseases you think are contagious? (If they
have mentioned TB and STIs, ask them first about TB and later about STIs.)
• Do you know the symptoms of TB?
• Is TB curable?
• Are there any home remedies for TB?
• How can you prevent the spread of TB?
• Do you think you have to spend a lot of money on TB medication?
• How long should the medicines for TB be taken?
• Is it okay if you stop the medicines as soon as the symptoms go away?
If they have a family member with TB, they may be able to answer some of the
questions. The facilitator should write down the answers. If they mention home
remedies, be sure to tell them that there are no home remedies for TB.
The trainer should then give them the correct information about TB.
Importance of adherence to the medicines along with the reason should be explained
repeatedly. The fact that TB is curable should also be emphasised.
Activity 2: Group discussion (40 minutes)
Topic: Symptoms and treatment of STIs
Instructions:
The same activity should be done for STIs also. Here, the participants may offer very
interesting “remedies” for STIs, e.g.:
• Sex with a virgin cures STI.
• Having a bath in a pond or river where there are fish will cure STI (the fish is
supposed to peck at the infection and remove it).
The importance of using a condom during sexual intercourse should be stressed.
They should also be told about the doctors in their locality who treat STIs.
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Activity 3: Game (10 minutes)
Topic: Differentiating between facts and myths about TB and STIs
Instructions:
Have two sets of flash cards ready - one for TB and the other for STIs.
The set for TB should have cards with the following illustrations:
•
A person covering their mouth and coughing
•
A person coughing without covering mouth
•
A person going to the doctor
•
A doctor giving free medicines
•
A doctor taking money for the medicines
•
Taking medicines even after feeling well
•
Throwing the medicines away after feeling well
The set of cards for STIs should have illustrations of:
•
man or woman with blisters on genital parts
•
Person with genital discharge
•
Going to the doctor
•
Having a bath in a pond where there are fish
•
Taking medicines even after feeling well
•
Throwing medicines away after feeling well
•
Using a condom during a sexual act
•
Refusing to wear a condom
Step 1
Divide the participants into 2 groups.
Step 2
Give each group one set of cards.
The participants should be asked to arrange the cards on the table in the correct
sequence, leaving out the card(s) that they think give the wrong information.
Step 3
Each group should see if the other group has arranged the cards in the correct
sequence. If not, they should give the reason.
Session Summary (15 minutes)
Ask the participants if they have any questions. Wind up the session by summarising
with the help of slides.
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Reference Material
Conditions that Need Special Attention: TB and STIs
Tuberculosis and sexually transmitted diseases are two conditions for which home
care alone is not enough and help from a health-care worker should be sought.
Tuberculosis
Tuberculosis is a long-lasting, contagious disease caused by a bacterial infection. If
someone has HIV infection they are more likely to get tuberculosis. TB also
accelerates the progression of HIV to AIDS. It can be cured with the correct
treatment. It mostly strikes young adults (15 to 35 years old), especially those who
are weak, poorly nourished, have been in contact with someone with the disease.
The most common symptoms are:
•
Chronic cough for more than 3 weeks, which is often worse just after waking
up, and may involve coughing up blood.
•
Loss of weight and increasing weakness.
•
Mild fever.
•
Sweating at night.
•
Pain in the upper back or chest.
•
Loss of appetite.
•
In children, the lymph nodes can be infected , most often in the area of the
neck and shoulders.
Prevention:
•
Everyone—without exception—should seek early assessment and health
care if coughing for 3 weeks or more.
•
Everyone—without exception—should cover their mouth when coughing.
•
Everyone—without exception—should spit into a closed container, not on the
ground. The contents should be thrown into a fire or covered with mud.
•
Everyone—without exception—should avoid being in an unventilated space
with a person who has been coughing for more than 3 weeks.
•
All homes, health facilities, workplaces, and other places where people meet
should be ventilated—make sure there is a way in and out for fresh air.
•
All newborn babies and young children should be immunised against
tuberculosis with BCG vaccine.
Treatment:
The treatment of tuberculosis involves the use of 2 or more medicines. All the
medicines should be taken regularly without fail for the full course (as determined by
the health-care provider), to be completely cured. Otherwise, the symptoms will
reappear.
Important - People with tuberculosis should know:
•
Which medicines they must take to cure tuberculosis
»
How to take the medicines
•
How long they need to take them
•
What side effects they should watch for
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•
That they should not stop treatment when they feel better
•
That prompt, complete treatment will cure tuberculosis
•
That prompt, complete treatment is the best way to prevent further infection
•
Medicines for tuberculosis are given free in government tuberculosis hospitals
/ clinics
•
Women should know that they should avoid pregnancy while on treatment as
their condition may worsen after childbirth and that they may infect their
newborn.
•
Eating well at regular times is as vital to cure as medicines
•
People with tuberculosis should always spit in spittoons and not wherever
they feel like
Normal reactions to the drugs:
• Nausea and loss of appetite
• Orange/red urine
• Burning sensation or pain in the stomach
• Vomiting
If you have these side effects DO NOT STOP the medications prescribed!
See your doctor immediately for advice.
When to seek help
• If the sick person has AIDS and has a cough or other signs and symptoms
that suggest they might also have tuberculosis.
• If the sick person has a reaction to the anti-tuberculosis medicines. Severe
reactions are:
o Joint pain or a burning sensation in the feet
o A new skin rash and itching
o Yellow skin or eyes
o Repeated vomiting
o Deafness, dizziness, or eyesight problems
Sexually Transmitted Infections (STIs)
STIs are infections that are transferred from one person to another during a sexual
act. Most STIs are easy to treat. If they are detected and treated early, they do not
cause serious problems. If they are not detected or treated early, the infection may
spread and cause complications such as infertility.
If an HIV-positive person has an untreated STI, the potential to spread the infection
grows. A person who is HIV-positive and also has an STI may also progress to AIDS
more quickly. Therefore, treating an STI during the asymptomatic stage (when the
symptoms of infection are not visible) is important, since this can keep the person
healthy for a longer time.
STIs havg few symptoms. A person may be infected for some time and not know it.
This is particularly so for women. The danger is that one can spread the disease
during this time to others without realising it.
Sexually transmitted infections of the genital area are common in both men and
women with AIDS They often cause pain and discomfort.
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There are 6 common ways that such genital problems appear in men and
women.
•
An unusual discharge (mucus or pus-like substance) from the vagina.
•
An unusual discharge from the urethral opening of the penis.
•
Open sores or ulcers in the genital, groin, and rectal areas, which sometimes
start as blisters.
•
A rash in or around the genital area.
•
Warts in the genital area or around the anus.
•
Swollen glands in the groin.
•
Burning or painful urination, especially in men.
Seek a doctor’s help IMMEDIATELY if:
•
An STI is suspected
•
Difficulty or pain while passing urine is experienced
•
Genital warts are present
•
Genital ulcers are present
•
There is an unusual vaginal discharge that is foul-smelling, itchy, very
plentiful, or green, yellow, or grey in colour
•
A pain develops in a woman’s lower abdomen, particularly if it is
accompanied by a fever
•
A woman's periods stop or become irregular or erratic
•
There is a discharge from the penis
•
There is swelling and/or pain in the scrotum
(Get a list of doctors treating STIs in your locality from an NGO or social worker.)
What to do at home
•
Always use a condom each and every time during sexual contact.
•
Always keep private parts clean (wash with clean water).
•
Wash hands before and after touching the genital parts.
•
After going to the latrine, wipe/wash the anus in a direction away from the
vagina so that faeces don’t get into the vulva/vaginal region.
•
Open wounds and sores should be cleaned with soap and water and kept
dry.
•
Blisters should be bathed with salt-water solution (one teaspoonful of ordinary
salt in half a litre of clean water).
•
Soreness and redness in the vulva or penis can be treated by applying
gentian violet solution internally and externally to the affected area (one
teaspoon of gentian violet crystals dissolved in one litre of clean water) using
a soaked piece of clean cotton wool, cloth, or gauze. Do it once daily for 3
days.
•
A rash on the penis or under the foreskin will often respond to soaking in a
dilute salt-water solution. Pull back the foreskin, put the penis in the water
and soak for 5 minutes. Repeat 2 or 3 times a day.
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Session 8: Women and HIV/AIDS
Time: 2 hours
Aim
This session will teach the participants to recognise the various problems faced by
women with HIV and equip them with information to deal with them.
Learning Objectives
By the end of the session, participants will be able to:
•
Understand the social problems faced by women
•
Understand and describe the medical problems faced by women with HIV
•
Recognise the signs when a woman requires medical help
•
Understand the importance of VCT for women
•
Understand and describe the importance of proper care for a woman, from
pregnancy to childbirth, and afterwards
•
Recognise the symptoms in a woman during pregnancy and childbirth that
require medical help
•
Describe the necessary steps to be taken if a delivery is to take place at
home
Session Activities
Activity Time
________ (minutes)
1
75
2
45
Content
Materials
Slide(s)
Discussion about
the problems
faced by women
with HIV/AIDS
Story___________
Discussion about
breast feeding,
bottle feeding and
mixed feeding
Role-play
Flipchart / whiteboard and
markers
5-27
Flipchart / whiteboard and
markers
28-35
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Women and HIV
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Key Points
•
Women often lack control in relationships.
•
Women are traditionally not encouraged to talk about their sexuality and may
find it difficult to take decisions involving safer sex.
•
Women are biologically more prone to STIs.
•
Women with HIV may face additional physical and medical problems like:
o
Loss of menstruation
o
Skin and hair changes
o
Anaemia
o
HPV infection
o
Cervical cancer
•
VCT is very important at antenatal clinics.
•
Lowering risk of HIV infection in infants (termination of pregnancy, ARV
drugs, and modifying infant feeding).
•
Benefits and risks of exclusive breast feeding.
•
Benefits and risks of exclusive bottle feeding.
•
Risks of mixed feeding.
•
Pregnant women with HIV will have more problems during pregnancy and
childbirth than other women.
•
Antenatal care is very important.
•
Women should know what should be done before a pelvic examination
•
Postnatal care is also very important.
•
If there are any problems during pregnancy, a health-care giver should be
immediately consulted.
•
It is very important that the delivery take place in a hospital if the woman has
HIV.
If delivery in a hospital is not possible, certain precautions should be taken
and all the things necessary for the delivery should be made ready much
before the delivery is to take place.
Activity 1: Group Discussion (1 hour 15 minutes)
Topic: Problems faced by women with HIV/AIDS
Instructions:
A majority of the caregivers will be women and many of them might be HIV-positive
themselves. Many of them would have come across problems that women face
because of HIV infection. You can initiate a discussion by asking them questions
such as:
1. What are the problems faced by women with HIV infection?
They may talk about social and medical problems. You will have to add information
that is incomplete or missing. You can use slides to do this.
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Points to cover.
•
Loss of menstruation
•
Skin and hair changes
•
Anaemia
•
HPV infection
•
Cervical cancer
Discussion points:
•
Do women have a say in the use of condoms?
•
Do you know why women are more vulnerable to HIV infection?
•
Most of them may not be able to answer this question so you may have to
answer it.
•
What should someone who is-HIV positive or who thinks she may be HIV
positive do if she finds out she is pregnant?
After all the points for this question have been covered, you might want to tell them
Gita’s Story (see below) to reinforce what you have told them.
Points to cover:
•
VCT is very important at antenatal clinics.
•
Lowering risk of HIV infection in infants (termination of pregnancy, ARV
drugs, and modifying infant feed).
•
Pregnant women with HIV will have more problems during pregnancy and
childbirth than other women.
•
Antenatal care is very important.
•
Women should know what should be done before a pelvic examination
•
Postnatal care is also very important.
•
If there are any problems during pregnancy a health-care giver should be
consulted immediately.
•
It is very important that the delivery take place in a hospital if the woman has
HIV.
•
If delivery in a hospital is not possible, certain precautions should be taken
and all the things necessary for the delivery should be made ready long
before the delivery is to take place.
(All the answers given by the participants should be noted by the facilitator)
If there is time, you may tell the following story to illustrate the points for discussion
above:
Gita’s Story
Gita was the eldest of two children and the only daughter of her parents. They
belonged to a lower-middle-class family in Salem (TN). She and her brother had a
comfortable and happy life. She had just completed her 10th standard when her
parents thought it was time she got married. She was only 16 years old. Gita was
scared of marriage and wanted to continue with her education. Her parents started
looking for a groom. They wanted somebody who would take good care of their
precious daughter. Her parents found the perfect match in 24-year-old Arun, who
worked as a supervisor in a garment export firm. On December 21st, 2000, they
were married.
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Gita and Arun were very happy. He took good care of Gita and she was very happy
and thanked God forgiving her such a good husband.
Six months after the marriage, Arun started falling ill very often. They went to the
local doctor. After asking him a lot of questions the doctor sent Arun to the
Government hospital.
There. Arun was counselled and advised to undergo an HIV/ AIDS test. He was
found to be positive. This was a shock to Arun. He had gone to a commercial sex
worker just once, a few months before his wedding. This couldn’t be happening to
him!
He was advised to tell his wife about his status so that she could also be tested.
Initially Arun was hesitant. How could he tell this to his wife whom he loved so much?
He needed time to do this. Gita noticed that Arun was very gloomy but thought it was
because of his illness.
Finally, he mustered enough courage to tell Gita about his status and what it meant.
Gita was stunned. She was in a state of shock. She felt her perfect life had come to
an end too soon. To make matters worse, she found herself pregnant. She agreed to
get herself tested. She tested positive.
The counsellor at the hospital told her that she needn’t lose hope. The counsellor told
her that if she took care of her nutrition and health, she could keep the effects of HIV
infection away for a long time. She also told Gita that there were medicines to lower
the risk of infection to her baby.
Gita was angry with Arun and took some time to accept the situation.
She finally forgave Arun and decided to take the counsellor s advice and get on with
her life.
She went back to the counsellor, who put her in touch with a social worker who
worked with people with HIV infection. The social worker advised her to go for
antenatal counselling in the hospital. There she was told about the proper care she
had to take about her food, hygiene, and about breast feeding and bottle-feeding.
She was also told about the precautions she had to take to keep infections away.
She was also told to come for checkups every month.
She started caring about Arun's health also. She saw to it that Arun took his
medicines regularly. Arun’s health improved and he was able to work.
She confided in her parents and her brother about her problem. She consoled them
by explaining that through proper nutrition and medical care she and Arun could live
a long life.
She slowly came to know that there were other people in her locality who had the
same problem. She would meet them at the support-group meetings and share her
problems with them.
Her parents and brother were a source of great support. She and Arun moved to a
house near her parents' house. The time for her delivery was nearing. Her mother
wanted her to have the baby at home, but Gita told her that it was safer to have the
baby at the hospital.
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She gave birth to a baby girl. The baby did not test positive but she had to be tested
again later to verify that she was indeed not infected. Gita was told to care for her
baby as if she were HIV-positive. She was also told to tell her husband to always use
a condom.
Her mother was there to help her with the baby. The mother had also been
counselled on how she should care for Gita and the baby.
Gita was once again happy with her life. She took good care of her family. She did
not neglect herself. She saw to it that she ate nutritious food and always visited the
health-care provider if she had any physical problems. Whenever she felt tired she
would ask her mother to help her. Arun was also very helpful in the house though he
continued with his job as a supervisor.
After Gita’s daughter was 18 months old, she was again tested for HIV infection and
was found to be HIV-negative. Gita was very happy. She was a source of great
inspiration to a lot of women with HIV infection who attended support-group
meetings.
It is now nearly four years since she got married. Gita and her husband are still
active and healthy. They have promised each other that they will do all the things
advised by the counsellor and the health-care provider so that they can be healthy
for a long time and live for their daughter. They also decided to use condoms
regularly so as not to have another child or risk the possibility of re-infecting each
other.
Activity 2: Group Discussion and Role-play (45 minutes)
Topic: Breast feeding, bottle feeding, and mixed feeding
Instructions:
•
With the help of slides, tell the participants about breast feeding, bottle
feeding, and mixed feeding. Encourage them to ask questions and let the
other participants answer these questions if possible.
•
Divide the group into 2 groups, group 1 and group 2.
•
Ask each group to choose a leader.
•
Give group 1 the topic “Exclusive breast feeding is better than exclusive
Bottle feeding for a child whose mother is HIV+.” Give group 2 the topic,
“Exclusive bottle feeding is better than exclusive breast feeding for a child
whose mother is HIV+.”
•
Give them 15 minutes to prepare a 2-minute jingle or advertisement for the
radio or TV. If it is a TV advertisement they may have to act it out.
Make sure people understand that this is not a competition but a fun activity.
People should concentrate on the learning aspects and not winning or losing.
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Reference Material
Women and HIV
Biological vulnerability
Research shows that the risk of becoming infected with HIV during unprotected
vaginal intercourse is as much as 2 to 4 times higher for women than men. One
major reason for this is that women have a larger surface area of mucosa (the thin
lining of the vagina and cervix) exposed to their partner's secretions during sexual
intercourse.
Women are also at more of a risk of other STIs (multiplying the risk of contracting
HIV tenfold). They may not note the early symptoms of HIV, as ulcers inside the
genitals may not easily be noticeable. There is also evidence that women again
become more vulnerable to HIV infection after menopause. In addition, tearing and
bleeding during intercourse, whether from rough sex or rape, multiply the risk of HIV
infection, as does anal intercourse. Anal intercourse often tears the delicate anal
tissues and provides easy access for the virus.
Lack of control in relationships
The majority of women in the world lack economic resources, and are fearful of
abandonment or of violence from their male partner. Thus they have little or no
control over how and when they have sex, and hence have little or no control over
their risk of becoming infected with HIV.
Even when a woman suspects her partner has HIV, she often cannot risk losing his
support by refusing sex or insisting on condom use. Although some men agree to
use condoms, many react with anger, violence, and abandonment.
Condom use and pregnancy
Couples who want children need to know their HIV status. However, couples are
often unwilling to openly discuss issues of sexuality, and voluntary HIV testing and
counselling services are not always available.
STIs and HIV
Because STIs carry an especially heavy social stigma for women, they tend to avoid
STI clinics and treatment. Women are often socialised to accept ill health and
women's troubles as their lot in life.
Problems faced by women with HIV
Women living with HIV may experience irregularities in their cycles, even if they are
not going through menopause. They may also show symptoms similar to menopause
such as:
Loss of Menstruation
This may occur because of severe weight loss or pregnancy
Things to do
Iff or 2 periods are missed she should go to the health-care centre to be examined.
A woman may feel that loss of menstruation means a loss of capacity to bear
children or a loss of femininity and may feel sad or depressed. She should be helped
to overcome this loss of self-esteem by being told that a lot of women experience
loss of menstruation for a variety of reasons. They should be encouraged to be with
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friends, to involve themselves in the people and activities around them, and to
remember that they are still worthwhile and have a great deal to give.
Skin and Hair Changes
•
Hair becomes thinner and more brittle.
•
Sudden or abnormal hair loss can result from taking anti-HIV medicines.
•
Stress can also affect hair growth and the health of hair. Take steps to reduce
stress and anxiety.
•
The skin becomes less firm and drier.
Things to do:
•
Take steps to reduce stress and anxiety.
•
B-complex vitamins can help relieve dry skin and hair.
Anaemia
Anaemia can be a very common finding in women with HIV infection. There may be
many causes: Low red blood counts, low vitamin B12 stores, iron deficiency, a
thyroid that may not be functioning correctly, copious blood loss during menses, low
hormone levels, an effect from medication, or an infection that invades the bone
marrow.
A major cause of anaemia and fatigue is iron deficiency. Many women lack the
necessary amount of iron. A poor diet, as well as heavy menses, can cause a
deficiency of iron every month. Frequent or heavy menses can be very common in
women who are HIV infected. This leads to a great deal of blood loss and anaemia.
Things to do:
•
Eat foods rich in iron (green leafy vegetables, vegetables like drumsticks and
bitter gourd, liver - refer to section on nutrition)
•
Take iron tablets as prescribed by the doctor (A normal effect of iron tablets is
darkening of the stool)
Many times women become so accustomed to feeling fatigue that they may never
report it when they see their health-care provider.
As a woman's immune system weakens, she will be prone to a lot of gynaecological
problems. The most common problems are:
Human papillomavirus (HPV)
This virus causes infections that cause genital warts. These can be seen as warts
usually in the genitals and sometimes on the hands and feet. This is a sexually
transmitted virus.
Cervical cancer
Genital warts can eventually lead to cervical cancer (cancer of the cervix).
When to see the doctor
A woman should see the doctor if:
•
She has any abnormal discharge with a foul smell.
-
There is spotting of blood in between her periods.
•
She has irregular periods.
•
She has pain in the lower abdomen.
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•
She feels tired in spite of getting enough of rest.
•
She finds any warts in her private parts or anywhere else.
•
Her periods have stopped.
•
She thinks she has STI.
Things to remember before going for a pelvic examination
•
The best time for your appointment - if you know you're going to have a
gynaecological exam - is one week after your period, while the worst time is
the week prior to your menstrual cycle.
•
You should also refrain from sexual intercourse for 24 hours prior to your
examination.
•
You will feel more comfortable during your pelvic exam if you empty your
bladder beforehand.
Important: A woman with HIV who uses pieces of cloth as menstrual pads should
always remember to wash them in hot water with soap/detergent powder and dry
them in the sun.
Remember! In most households in India women are the caregivers. Even though
many who care for others are themselves infected with HIV, they look after their
spouse and children, and ignore themselves. They should learn to give importance to
and value themselves and should safeguard their health by eating well and getting
treated for all infections.
Pregnancy and childbirth
Many times it is during or immediately following a pregnancy that a woman discovers
she is infected with HIV or has AIDS. This is especially distressing news because
pregnancy for a woman with HIV or AIDS brings with it the risk of having an infected
child and the possibility of a worsening of her own illness.
Voluntary HIV counselling and testing (VCT) should be available in antenatal clinics.
Many HIV-positive women will be diagnosed for the first time during pregnancy;
therefore, this service is critical to the ongoing treatment, care, and support for the
mother, her family, and newborn child. The benefits of VCT in antenatal care include:
•
Knowledge of a negative result can reinforce safer sex practices
•
Women diagnosed with HIV can encourage their partners to be counselled
and tested
•
Knowing their HIV status enables women and their partners to make more
informed choices related to breast feeding and future pregnancies
•
A woman (and her family) who knows she is HIV-infected can be encouraged
to enter into the continuum of care in order to seek early medical treatment
and care of opportunistic infections for herself and her child
Access to VCT is important in antenatal clinics because there are ways to prevent
transmission, such as:
•
Termination of pregnancy
•
Antiretroviral therapy (ARV) which can be accessed at PPTCT Centres
•
Modifying infant feeding
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Termination
Where termination of pregnancy is both legal and acceptable, the HIV-positive
woman can be offered this option. However, many women learn of their HIV status
during pregnancy, and will not be diagnosed in time to be offered termination. If
termination is an option, the woman, or preferably the couple, should be provided
with the information to make an informed decision without undue influence from
health-care workers and counsellors.
Antiretroviral therapy
Drugs that lower the risk of transmission from mother to child are given during
delivery to the pregnant woman. So she should be under the care of a health-care
provider as soon as she knows about her condition.
Infant feeding
An HIV-positive mother can transmit the HIV virus to her baby through breast
feeding. However, breast-milk is generally the best food for the baby, as it has all the
good nutrients and protects against many other diseases.
To minimise the chance of transmitting HIV to the baby, there are 2 choices:
•
Exclusive bottle feeding
•
Exclusive breast feeding
Exclusive bottle-feeding
This means no breast feeding at all.
Benefits:
•
The baby won’t get HIV from breast milk
•
The father and other relatives can also feed the baby
Risks:
•
The baby may not grow well if the parents cannot afford infant’s milk powder
or cow’s milk
•
The baby is more likely to develop diarrhoea if there is no safe, clean water or
if the bottle or cup is not cleaned properly
•
The relatives may get upset if the mother does not breast-feed the baby
•
Others may think the mother has HIV or another disease if they don’t see the
mother breast feeding the baby
Points to be considered by the mother before deciding on bottle-feeding:
•
Can she afford to buy enough infant milk powder/cow's milk?
•
Does she have access to clean water?
•
Can she prepare the milk safely (including boiling the water first)?
•
Can she clean and sterilise the bottles (with detergent and boiling water)?
•
If the answer to any of these questions is NO, then the child may be at risk of
getting very sick from diarrhoea and malnutrition. She should consult the
doctor about this.
Exclusive breast feeding
Exclusive breast feeding means giving the baby only breast milk. In such a case:
Give the baby only breast milk for the first 3 io 6 months of life. This means no other
food ordrinks, such as water, juice, tea, animal milk, should be given to the baby.
When the baby is 3 to 6 months of age, replace breast feeding by powder milk/ other
milk and foods in a short transition period
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Benefits:
•
Breast-milk is very nutritious for the baby
•
Breast-milk prevents many other diseases (diarrhoea and chest infections)
Risks:
•
There is a chance of the mother transmitting HIV to the baby
•
The risk increases when:
o
The mother is already sick with AIDS
o
The mother has cracked or bleeding nipples
o
The mother has breast infection
(Go to the doctor if you get sores, lumps, or pain in your breast or if your baby has
mouth sores)
Avoid mixed feeding!
If the baby is breast-fed and also given other baby foods, then there is more chance
of the baby becoming HIV-infected. This may be because mixed foods may irritate
the linings of the mouth and stomach and make it easier for HIV to enter the baby’s
system.
Post-natal care of the HIV-infected mother and her infant
Postnatal care is the care given to the mother and baby after the baby's birth. In
many instances, the basic postnatal care of the HIV-infected woman and her infant
will be no different from routine postnatal care. However, the mother (and possibly
partner/family) might need additional counselling and support. HIV-infected women
are more prone to medical complications such as urinary tract infections, chest
infections, and infection of the wound after a Cesarean. The caregiver should be alert
for signs of infection such as fever, rapid pulse, lower abdominal pain, and foul
smelling vaginal discharge. HIV-infected women should be taught about care of their
genital area and safe handling of blood and vaginal discharge.
Postnatal counselling:
Specific counselling for the HIV-infected mother might include:
•
Contraceptive advice - The only contraceptive methods that will prevent the
spread of HIV are barrier methods such as condoms.
•
Discussion about disclosure of her HIV status to her partner, family, and
trusted friends.
•
Information about the possibility of infection in the child and details of how
and where the child can be checked and treated.
•
Support for her infant feeding choice and further education as appropriate.
If a woman is HIV-positive, she is more likely to have problems during her
pregnancy, during delivery of the baby, or after the birth.
Such problems may include:
•
Miscarriage - loss of the baby during pregnancy
•
Fevers and infections
•
Anaemia - less blood in the body characterised by weakness and
breathlessness and fatigue
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•
Premature labour - delivery occurring earlier than it should, often causing the
death of the baby.
•
A smaller baby - the weight at birth of even a full-term baby can be much
lower than normal (2.5kg); babies with a low birth-weight are more likely to
have subsequent problems.
•
Infections after birth - Women with HIV are more susceptible to infections in
general, and might have severe infections after delivery (puerperal sepsis),
which do not respond to the usual treatment with antibiotics.
What to do at home
Antenatal care:
“Antenatal" means the time from conception until delivery. All pregnant women
should receive antenatal care. This is even more important if they are HIV-infected.
Women infected with HIV should be advised to follow the routine recommendations
for all pregnant women. These include:
•
No medicines should be taken except those prescribed by a health-care
worker (women should always tell their health-care worker that they are
pregnant if they see them for another reason). Some medicines can be
harmful to both the mother and her developing baby so it is best not to take
any risks
•
The mother should eat for herself and for her growing child. She should eat
from the 3 main groups of foods described in the section on nutrition
•
Good hygiene should be practised
•
If possible, heavy weights should not be lifted and heavy work should be
avoided. This may lead to premature labour and make one feel easily tired.
•
Medicines to prevent parent-to-child transmission of HIV are now available
free of cost at some district hospitals .
•
Pregnant mothers should ensure that they are properly immunised against
tetanus to protect themselves and the baby (two doses if you have not been
immunised earlierand one dose if immunised within the past 5 years).
Before delivery
It is strongly recommended that the HIV-infected mother should plan to deliver in a
health centre or hospital. If this is not possible, and there are no complications, then
the mother, with the help of a health-care worker, family and other caregivers, should
prepare for delivery in the home.
These are steps to take to reduce risk to the mother, the baby, and those who help
with the delivery. Advise people to prepare beforehand the things that they will need
for a safe delivery. These are:
•
A separate room or part of the room where the delivery can take place. The
place should be kept clean and warm
■»
Two clean, thick threads for tying the umbilical cord
•
One clean new razor blade for cutting the umbilical cord
•
Soap
•
Several large pieces (about 1 metre by 1.5 metres each) of cloth for wiping
and wrapping the baby .One square metre plastic sheet or old cloth to put
under the mother
•
One container of antiseptic solution such as iodine solution or gentian violet
•
Cotton wool or clean cloths for applying antiseptic solution to the cord stump
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•
Gloves or plastic bags for the delivery assistant and for handling the afterbirth
•
One container of clean (boiled and cooled) water for cleaning the mother, the
baby, and the assistant's hands and arms
•
Pads for the vaginal area of the mother to catch drainage following the birth.
These can be made from pieces of old but clean cotton cloth
•
Warm, clean clothing for the baby following birth
•
Clean clothing for the mother to change into after fhe delivery
•
Anyone who is helping in a delivery must cover any open wounds on their
skin
•
After delivery, good hygiene should be carefully followed, especially in the
genital area. Washing with soap and water should be done twice daily.
Care during childbirth
The birth attendant and others helping her should always keep in mind the infection
control practices (refer to Section I on Prevention of HIV infection) during the birth
and afterwards. The most important precaution is to cover the hands with gloves or
plastic bags when handling blood and other body fluids.
When women and their families must seek help:
During pregnancy, help should be sought immediately if any of the following occurs:
•
Bleeding from the vagina
•
Excessive vomiting that does not respond to home remedies
•
Headaches
•
Swelling of the feet
•
Sharp pain in the abdomen
•
Convulsions
•
The baby stops moving
During childbirth, help should be sought immediately if any of the following happens:
•
Labour stops or slows down or lasts a very long time after being strong or
after the waters break
•
Breech delivery (if the baby’s legs come out first)
•
The hand comes out first
After childbirth, help should be sought if any of the following happens to the mother:
•
Severe bleeding from the vagina
•
Fever
•
Foul-smelling vaginal discharge
•
Severe abdominal pain
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Session 9: Children and HIV/AIDS
Time: 1 hour 30 minutes
Aim
The aim of this session is to teach the participants about the problems faced by
children infected and affected by HIV/AIDS, and ways in which to deal with them.
Learning Objectives
At the end of the session participants will be able to:
•
Explain how HIV is transmitted in children
•
Describe the major and minor signs of HIV infection in children
•
Understand the needs of a child with HIV infection
•
Explain the general rules of looking after a child with HIV infection
•
Understand the needs of orphans
Session activities:
Activity Time
(minutes}
1
50
30
2
Content
Materials
Slide(s)
Questions and
Discussion about
the problems
faced by children
with HIV/AIDS
Poster paper and markers
Handouts
3-17
Case studies to
test participants
on care of
children with
HIV/AIDS
Flipchart / white board and
markers
The following material for this session is included at the end of this chapter:
Reference Materials:
-
Children and HIV/AIDS
Key Points
Most children contract HIV infection from their parents.
•
•
Major signs of HIV infection in children are:
o
Weight loss or abnormally slow growth
o
Chronic diarrhoea for more than 1 month
o
Prolonged fever for more than 1 month
Minor signs of HIV infection in children are:
o
o
Generalised lymph node enlargement
Fungal infections of mouth and/or throat
Recurrent common infections (e.g. ear, throat)
o
Persistent cough
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•
Generalised rash
•
Children with HIV/AIDS should be treated as normal.
•
They need to be well fed - at least 4 to 5 small meals a day.
•
They should be immunised.
•
They should be allowed to mingle with other children and also allowed to
continue school.
•
They should be kept away from children and adults who are ill.
•
Infections, especially diarrhoea, should be dealt with immediately.
•
In some children the progression of HIV is faster than in others (reason
unknown).
•
They need a lot of love.
•
Children who have been ill for a long time should be held by the mother or
caregiver
•
Relatives, older siblings, or well-run orphanages should care for orphans
affected by HIV.
Activity 1: Group discussion (50 minutes)
Topic: Problems associated with children with HIV/AIDS
In this exercise, participants will discuss the various problems faced by children with
HIV / AIDS in their community and suggest remedies for each of the items they have
listed. Once this is done, the facilitator will provide (or guide participants in seeking
out) further information or resources. The facilitator may invite a specialist to answer
technical questions (e.g. paediatric medications) during this session. Slides may be
used to show the participants how medicine can be given to a child.
Instructions:
The facilitator has to lead the session by introducing the topic. He or she will use a
participatory approach by asking a series of questions to elicit answers from the
participants. Here are a few sample questions:
•
“How many of you know children in your community that have HIV/AIDS?”
•
“What are the problems faced by children and their caregivers?" (Use poster
paper to write down the problems)
•
“How do you deal with them?”
•
“What will you do if a child has diarrhoea?"
•
“Is there a health-care provider (doctor or nurse) near your community for an
emergency?
Points to cover:
•
Most children contract HIV infection from their parents, apart from the modes
of transmission as in adults.
•
Some children’s illnesses progress faster than others
•
The major and minor signs of HIV infection
•
Feeding infants:
o
Breast-feeding information
o
Care of breast-fed infants
o
Bottle-feeding information
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Care of bottle-fed infants
Dangers of mixed feeding
Other foods
Immunisation
Preventing injuries
Preventing infections
How to give a child medicine
Emotional support
Treating the child as normal
Care of orphans affected by AIDS
Care of orphans infected with HIV
List of orphanages in the region
Breast-feeding information will already have been given during the session Women
and HIV, so this session will give you an opportunity to make sure they have
understood the information.
If the facilitator has an assistant, he or she may write down the points, while the
trainer can concentrate on facilitating the discussion.
Activity 2: Case study (30 minutes)
Topic: Understanding and providing solutions for problems faced by children with
HIV
Instructions:
Case studies are useful if you want to know if the participants have understood the
topic. Participants who are too shy to ask or answer questions will also learn a lot
from this exercise.
1. Divide the participants into 2 groups.
2. Give them a situation that has to be discussed among themselves and
presented in front of the other participants. You might have to explain the
case to them briefly and the points they have to cover:
Case study 1 (Group 1)
Radha had a baby recently and the baby is HIV+. She does not know how to
care for him. She knows that you have attended a training programme on
home-based care for HIV+ people and comes to you for advice. How would
you advise her?
Case study 2 (Group 2)
Ravi’s daughter is 3 years old and is HIV+. The doctor has given her some
medicines that have to be taken regularly. She does not like taking medicines
and Ravi beats her to make her take her medications. What advice will you
give to Ravi?
3. Ask each group to make their presentation or do the role-play while the other
group gives their feedback.
Session Summary (10 minutes)
Summarise the session, emphasising the information that might have been missed or
misrepresented by the participants.
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Reference Material
Children with HIV/AIDS
Transmission of HIV in children
Apart from the modes of transmission as in adults, HIV is also transmitted to children
from a HIV-positive mother during pregnancy, delivery (while passing through the
birth canal), or breast feeding (PTCT - parent-to-child transmission).
HIV/AIDS in children is very much like HIV/AIDS in adults. However, in children the
disease is more difficult to diagnose correctly, and the blood test cannot be done with
certainty until the child is at least 18 months old. Many HIV-positive children develop
symptoms at about 3 to 4 months of age. Small babies and children with HIV often
have fever, diarrhoea, coughing, and ear and throat infections. They do not gain
weight properly. Their growth is slow and they may start crawling, walking, and
talking very late compared to other children. These are common symptoms that may
have other causes. This long period of uncertainty until the child can be tested is very
difficult for families.
If the parents are HIV-positive, the baby should also be cared for as if he or she
has HIV infection until he or she is tested at 18 months.
Major signs of HIV infection in children:
•
Weight loss or abnormally slow growth
•
Chronic diarrhoea for more than 1 month
•
Prolonged fever for more than 1 month
Minor signs of HIV infection in children:
•
Generalised lymph-node enlargement
•
Fungal infections of mouth and/or throat
•
Recurrent common infections (e.g. ear, throat)
•
Persistent cough
•
Generalised rash
Babies with HIV infection usually develop the symptoms of AIDS more quickly than
adults do. This is because their immune systems are less developed, and they
cannot resist HIV or fight opportunistic infections as effectively as adults.
Most HIV-related illness is caused by common infections, which can be prevented or
treated at home or in a health centre. However, the illnesses often last longer in HIVinfected children and are slower to respond to standard treatments. Illnesses such as
chicken pox and measles can be life-threatening in these children. The standard
treatments are nevertheless the most appropriate treatments.
Care of newborn infants of mothers infected with HIV is no different from that of any
other newborn baby. Babies need to be picked up, held, and cuddled.
Even if a child is HIV-infected, there can be years of life and things that can be done
to make those years as healthy and full as possible.
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Each child is different. Some children with HIV show no symptoms of AIDS for years
and some progress very fast. ARV drugs are also beneficial to children.
General rules for caring for a child with HIV infection or AIDS:
•
Feed the child well
•
Breast feeding
•
For a child less than 4 to 6 months old the best food is breast milk.
Though an HIV-positive mother can transmit the virus to her baby through breast
feeding, breast feeding should be encouraged, as it gives the baby protection against
many types of infections. The risk of transmission of HIV by breast feeding is low
compared to the risk of the baby dying of other infectious diseases if not breast-fed.
If a mother decides on breast feeding, she should be counselled about ways to
prevent cracked nipples, which may increase the risk of infection. The mother
should be advised to take her bath before breast feeding or clean the breast
with clean water.
Bottle-feeding
•
The mother has to make a choice keeping in mind:
•
The affordability and easy availability of milk substitutes (milk powder, cow’s
milk or infant feed)
•
Availability of clean boiled water
•
Ability to always use clean vessels to prepare the milk and feed the baby
If all of the above requirements cannot be fulfilled, all of the time, she should be
advised to breast-feed her baby.
If the mother does not want to breast-feed her baby, it is safer to use a spoon
or a paladai (a small shell-like utensil used to pour milk into a baby’s mouth)
than feeding bottles.
Mixed feeding
Whatever the mother’s choice, she should stick to it. It is not advisable to mix
feeding methods (sometimes breast feeding and sometimes cow’s milk/ powdered
milk), because mixed foods may irritate the linings of the mouth and stomach and
make it easier for HIV to enter the baby’s system.
Once a child is 4 to 6 months old, breast feeding should be stopped and should be
given some solid foods along with the other milk:
-
Well cooked porridge made of any ground cereal like rice, ragi, wheat,
rava, etc., with some milk can be given. A little oil or ghee along with
sugar or jaggery can be added
■
Boiled and mashed potatoes or sweet potatoes
•
Fresh, peeled, and mashed fruits (remove all skin, seeds, and fibres)
Foods that are warm and either soft or mashed can be given with a spoon or your
fingers (don’t forget utensils and hands must be washed first!).
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As the child grows, larger quantities of adult foods should be given. A combination of
cereal-pulse, dal, well-cooked vegetables, curd, egg, and fruits can be given. They
should be fed 5 to 6 times a day. Around the 7th or 8th month breast feeding should
be stopped.
A 3 to 6 year old child needs half as much food as an adult does. The child
needs to eat small, frequent meals (4 to 5 times a day).
Immunisation
All children should be immunised, whether infected by HIV or not. Vaccines give
protection from many childhood diseases that can give rise to dangerous infections in
the HIV-infected child. Children should be immunised against measles, chicken pox,
BCG, and polio. Consult your health-care provider about this.
Preventing injuries
Keep glass containers, blades, and sharp-edged toys away from the reach of
children. Hold the sharp end away from yourself.
Stuffed and furry toys can hold dirt and might hide germs that can make the child
sick. Wash them often. Plastic and washable toys are better.
Emotional support
Infants and small children with HIV/AIDs need the same things as other children.
They need to be held, kissed, hugged, fed, and put to sleep by their mothers. As they
grow older, they need to play with friends and go to school. Frequent infections can
make them angry, frustrated, scared, and lonely. Family members should talk to
them and make them feel loved.
Children always need a lot of attention, so give them attention and listen to what they
have to say. If they are too ill to go out and play, family members can play with them.
Children who have lost a parent(s) may be unhappy if they are living with relatives or
with people they are not familiar with. They might stop talking and withdraw into a
shell. They may miss their parents and siblings (if they have been separated) and
might feel lonely. Their caregivers have to make sure that these children get a lot of
love and affection. They should also make sure that the children receive health care
for common illnesses and eat nutritious food. They should not be stigmatised.
Older children who know of their parents' infection might start blaming the parents,
especially the father, and pick up fights at home and outside. They might become
depressed and may even run away from home. Such children should be counselled
by a social worker.
Keep the child well fed and loved.
Promptly get any infection treated.
Treat dehydration immediately.
Remember, the needs of an HIV-infected child are the same as all other children.
Most important among these are love, care, and the chance to be with other children.
HIV cannot be spread by the child's urine, saliva, faeces, or vomit. A child with HIV
cannot infect others by playing with them or sharing toys. Treat the child as a normal
child.
Try to prevent infections by providing good nutrition, good hygiene, and by keeping
the child away from sick children and adults.
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Antiretroviral therapy
ARV drugs might be suggested by the health-care provider if a child’s CD4 count is
low. As with adults, some children may have more side effects than others.
Giving medicine to children
•
Liquid medicines can be squirted slowly into the side of the child’s mouth
using a dropper or syringe or may be poured from a spoon
•
If the medicine tastes bad, tell the child in advance
•
Praise the child after she or he has taken the medicines
•
If a tablet cannot be swallowed, crush it and mix it with a small amount of
milk, honey, sugar, or food
•
If the child vomits immediately after taking the medicine, give the dose again
•
If vomiting takes place after 20 minutes, don’t give the dose again
Children orphaned by AIDS
Children orphaned by AIDS can be divided into 2 categories:
•
Those whose parents were HIV-positive and they themselves HIV-negative
(HIV-affected children)
•
Those who themselves are HIV-positive (HIV-infected children)
In both cases, children need proper care and love. Ideally, close relatives who are
familiar to them should care for such children, as children tend to feel secure with
people they know.
When children who are orphans (whether HIV-infected or not), are cared for by other
family members, this places added financial burden on these caregivers. After their
parent's death, children can lose their rights to the family land or house. Without
education, work skills or family support, children may end up living on the streets.
These children are especially vulnerable, often becoming sexually active at an early
age and at risk from HIV themselves. Poverty is an overwhelming problem. These
orphans not only lack money but basics such as clean water, drugs, food, shelter,
and medical supplies. They do not have information about how to protect
themselves, and have poor access to doctors, nurses, and other health-care workers
and facilities. Community-health workers and social workers can play an important
role in arranging for care for such children.
In cases where the children are infected with HIV, it is found that it is usually the
grandparents who look after them. Even this is done very unwillingly. The main
reason for this is the stigma of having HIV, as well as the health problems arising
from HIV infection. Most of these caregivers (grandparents) themselves are old and
weak, with no source of income. Nonetheless, most children are more comfortable
with relatives than orphanages.
The options in caring for orphans may be:
•
If relatives (usually grandparents) are willing, proper guidance should be
given as to the care of HIV infected children, if the child is HIV-positive.
•
When one of the children is an adolescent, the child might head the family
and look after the siblings with support from the community. Their needs
should be monitored regularly by CHWs, social workers, or support groups.
•
If both these options are not viable, they can be cared for in the orphanages
run by various organizations (refer to Appendix 1).
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Session 10: Care of the Dying and the Dead
Time: 1 hour 15 minutes
Aim
The aim of this session is to teach the participants to take care of a person nearing
death and the precautions to be taken while handling a body of someone who has
died of AIDS.
Learning Objectives
By the end of the session, participants will be able to:
•
Recognise the signs of a person nearing death
•
Understand the needs and worries of a person nearing death
•
Care for a person or child nearing death
•
Know the precautions to be taken with the body of someone who has died of
AIDS
•
Know the needs of the family after the death
Session activities:
Activity
1
Time
(minutes)
60
2
15
Content
Materials
Slide(s)
Questions and
Discussion about
death
Flipchart/whiteboard and
markers
3-12
Summary
Flipchart / whiteboard and
markers
The following material for this session is included at the end of this chapter:
Reference Materials:
•
Care of the Dying and the Dead
Key Points:
•
After AIDS has progressed to a certain point, medications become ineffective.
•
At this point we know that the person is approaching death.
•
After this point, the goal of all care is to see that the person is comfortable.
•
Keep the person within community and family groups for as long as possible.
•
Provide physical contact by touching, holding hands, and hugging.
•
Appropriate arrangements must be made with relatives or orphanages to take
care of the children, to ease the person’s worries.
•
The family of a child nearing death will need emotional support. Support
groups or community-care providers can be a source of great support.
•
Children nearing death, like adults, may be sad, angry, afraid, or anxious.
They may express these emotions through their behaviour.
•
In very young children non-verbal communication is very important (holding or
touching).
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•
By discussing death openly, those around them are helping the dying person
to prepare for death.
•
Hands must be protected with gloves or plastic bags while laying out the
body, as blood and diarrhoea may be present.
•
HIV can live only in a person who is alive.
•
The dead body can be buried or cremated according to the family’s customs.
Activity 1: Discussion (60 minutes)
Topic: Caring for someone who is dying and dealing with death.
This session might be a little emotional. Some of the caregivers may have family
members that are nearing death. Some of them may be finding it difficult to accept
the fact that their loved one is dying while others may have accepted the situation.
While discussing death some participants may become emotional. This is natural and
should be accepted and respected.
Instructions:
The facilitator should start the session by talking about:
•
The inevitability of death
•
That certain diseases cause premature death and that AIDS happens to be
one of them
The facilitator will then initiate a discussion by asking these questions:
•
How do you know that a person is nearing death?
•
What type of care should be provided for a person who is dying?
•
Where can you provide care for someone who is dying?
•
How do you prepare a person for death?
•
What are the goals of caring for someone who is dying?
•
What can you do to meet these goals?
•
What precautions should be taken with the body of someone who has died of
AIDS? How can the family be helped after the death?
•
How can the family be helped after the death?
Other points to be covered:
•
Care of a dying child
•
Needs of a child/children whose parent is nearing death
•
Talking about death
•
Taking care of future concerns, especially about children
•
Pain management
•
Precautions while handling the body of someone who has died of AIDS
All the answers should be written down on the flipchart by the facilitator
Activity 2: Summary (15 min)
The facilitator will summarise the session and answer any questions.
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Reference Material
Care of the Dying and the Dead
At some point in the disease process of HIV/AIDS, there is nothing more that can be
done to effectively treat the opportunistic infections or completely relieve the
symptoms that they cause. The infections or illnesses have progressed beyond what
medicines can cure. At this point, the goal of all care (medical, nursing, religious, and
psychological) is to keep the person as comfortable as possible and to maintain their
dignity. At this point of time support group members and other members of the care
team may have to step in. The realisation that death of a loved one is not very far
away will cause a lot of distress to the caregiver, who in most cases is a family
member. In such cases members of support groups, peer educators, or social
workers who are close to the family may have to spend a lot of time with the family
during this period. They may have to help with the funeral arrangements and last
rites according to custom.
When does this time begin?
It is often difficult to decide when the focus on medical treatment should stop and
care for the dying should begin. The change in care may begin, for example:
•
When medical treatment is not available or is no longer effective
•
When the person says he or she is ready to die and really does appear to be
very sick; this is clearly different from someone who is depressed for a time
and who must be encouraged not to give up
•
when the body’s vital organs begin to fail
Where can you provide care for someone who is dying?
Care for the dying can be provided in a hospital or in the home. Most people prefer to
remain at home. However, some people may not want to actually die in the home.
They want to stay at home until the last moment but either because of their own or
the family's wishes they may want to go to the hospital to die. If this is the case, a
plan for transporting them will need to be thought out.
What are the goals of caring for someone who is dying?
The main goals of caring for someone who is dying is to keep the patient comfortable
and protected from problems that can make him or her feel worse.
You can do this by:
•
Helping the patient to maintain independence for as long as possible.
•
Helping the dying person to grieve for, and cope with, the continuing losses
he or she experiences.
•
Helping the patient and other family members to prepare for death: This may
include tending to relationships in the family or the community, and arranging
for the transfer of responsibilities (especially children).
•
Keeping the person within community and family groups for as long as
possible: Family members can include the patient in activities and events in
their lives even when it seems the person is too ill to enjoy or understand
what is going on.
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What can you do to meet these goals?
•
Give comfort.
•
If the person is in constant pain, make sure that pain medication is available
in regular doses. It should not be taken just when the pain is severe.
•
Encourage relaxation techniques like deep breathing; give back rubs or body
massages.
•
Continue basic physical care to keep the person clean and dry and to prevent
skin problems and stiffness of joints.
•
Encourage communication within the family and community. People with
AIDS and those they love need to feel that they are not outside the love and
life of their community. Help them use this time as a chance to heal old
wounds and to make peace with each other. This will help to increase the
comfort and acceptance of the whole family.
•
Provide physical contact by touching, holding hands, and hugging.
•
Provide or arrange for spiritual counselling with a representative of the
patient's religion if this is agreeable to the patient.
•
Allow the sick person independence.
•
Accept the person’s own decisions such as a refusal to eat or get up, or even
a demand to get up when you think that resting would be better for them.
•
Respect requests; for example, not wanting to see visitors.
•
Ask them what they are feeling. Listen when they tell you how they feel.
•
Accept the person’s feeling of anger, fear, grief, and other emotions.
Care of a dying child
•
When death is near, the family of the child will need emotional support.
Support groups or community-care providers can be a source of great
support.
•
Be willing to talk and answer questions about his or her illness.
•
Help the child to feel loved and not alone.
•
Ensure that family members are around to play when the child is able.
Points to consider:
•
In very young children, non-verbal communication is very important (holding
or touching).
•
Before the age of 5 it may be difficult to explain to a child that they are dying.
But children often understand more than we think about what is going on. If a
parent has died they may already be familiar with death.
•
Children, like adults, may be sad, angry, afraid, or anxious. They may
express these emotions through their behaviour.
•
They must be encouraged to talk. Just because they are silent does not mean
that they do not have questions or are not worried.
•
Their questions must be answered honestly.
Taking care of a child whose parent is near the end of life:
•
Children need to talk about the loss of their parents. If you don't talk to them,
they may suffer more later.
•
Talk in a simple and direct way so that the child can understand.
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•
Do not take children away from their dying parent; they need to be close to
each other.
•
Help children feel that they will still be loved and cared for, even after their
parent dies.
Preparing for death
Talk about death if the person wishes to. Many people feel that it is not good to talk
about the fact that someone is going to die, as if mentioning death is a wish for
death. But by discussing death openly, those around are helping the dying person to
prepare for death. It may take great courage to talk about it but it can be a big help
for the person to feel that his or her concerns are heard, that wishes will be followed
and that he or she is not alone. To avoid talking about death is a form of denial.
One of the most common worries is for the future of the children in a family. People
may fear that their children will be hungry or lack money for school fees after they
have died. Begin planning with relatives, friends, or orphan programmes for the
future of the children. It will ease such worries if the person knows that suitable
arrangements have already been made.
The person may be worried about being in pain as he or she nears death. Knowing
what it will be like can lessen the fear. If the person asks, describe what might
happen, such as difficulty in breathing, or passing in and out of consciousness. If
pain medications are available, reassure the person that they will be used in order to
prevent unnecessary pain.
The person may be worried about what will happen after they die. The anxiety can be
lessened by helping them to write a will, by planning and writing down details such as
funeral arrangements. Bringing a spiritual leader of the patient’s religion to pray or
talk with the person during his or her last moments might give them peace.
Precautions before a funeral
After death, you need to follow the same rules in dealing with the body as you did
when helping the person through his or her illness. Hands should be protected with
gloves or plastic bags when cleaning and laying out the body, particularly if there are
body fluids such as diarrhoea or blood, and washed with soap and water afterwards.
Wounds on hands or arms should be covered with a plaster or bandage.
Shortly after the person dies, the virus will also die. HIV can only live and reproduce
inside a living person. Therefore you do no need to worry about special precautions
during the funeral itself. The person can be either buried or cremated according to
local custom.
How can the family be helped after the death?
Immediately after a person has died, the family may need help to arrange practical
matters. They will also need emotional support to cope with the loss of a dear one.
Members of support groups, peer educators and social workers can be of great help.
They can assist the family with funeral arrangements in accordance with the customs
and regulations of the area in which they live.
The death may continue to cause practical difficulties for the family. This is
particularly true if planning for the death was not done properly. Also, the family and
loved ones will continue to grieve for many months. Any care or practical help that
you can give during this time can be useful. Setting aside time to visit and asking
how they are doing will help them to think of life beyond this painful time. Support
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group members can also help in cooking or looking after smaller children at this time
of grief.
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Session 11: Demonstration of Home-Nursing Procedures
Time: 3 hours
Aim
The aim of this session is to teach the participants to take care of medicines and
practice the various procedures used in home nursing.
Learning Objectives
By the end of the session, the participants will be able to:
•
Take care of the home health-care kit.
•
Know what should be included in a home health-care kit
•
Know the basic medicines and equipments necessary for a medical kit for a
primary health-care centre
•
Demonstrate the various procedures useful in home-care nursing
Session activities:
Activity Time
(minutes)
1
180
Content
Materials
Slide(s)
Small group
demonstrations
and role-play
about the health
care kit and
various home
nursing
procedures
Home health-care kit
Feeding bottles
Syringes and needles
Knife
Milk powder
Steel cups/tumblers
Bedpan/commode
Thick plastic bags/garbage
bins and closed containers
Steel or aluminium vessels
for sterilising
Stove
4-43
The following material for this session is included at the end of this chapter:
Reference Materials:
•
The Home Health-Care Kit
Key Points
•
All medicines should be kept out of reach of children
•
All medicines should be kept in a dry, insect-free place
•
Expiry date of medicines should be checked periodically
•
The home-care kit should have medicines for wounds, skin infections, and
fever, as well as ORS packets and gauze and cotton wool
•
Bed pans and commodes are useful for people who are very weak
•
Home nursing requires certain skills while caring for a person who is ill with
HIV infection:
•
Cleaning wounds and sores
•
Changing the bed sheet when the patient is bedridden
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; Comment: Imleni hjere..
Use of bedpan
Washing soiled clothes
Changing positions in bed
Preparing a bleach solution
Cleaning a bathroom
Cleaning commodes and bedpans
Cleaning the kitchen
Disposal of wastes
Preparing ORS
Removing gloves / plastic bags
Preparing gentian violet solution
Cleaning up spills
Preparing milk for a baby using milk powder
Sterilising feeding bottles, needles, sharp instruments, and other utensils
Note to facilitator: This is a long session. You can have a short break after each
group's presentation. Since there will be a lot of physical activity involved, they may
not be interested in games and may just want to chat or stretch.
Tips for an effective training:
•
The facilitator should be a health-care provider.
•
Demonstration of techniques can also take place in homes where people with
HIV infection have wounds and sores or are bedridden.
•
First and foremost, the contents of the health-care kit should be explained to
the participants (the name and what it is used for). If there are enough
participants they can be divided into 4 groups, otherwise you can have
smaller groups.
Activity 1: Small group demonstration/role-play (2 hours 40 minutes)
Topic: Demonstration of Home-Nursing Procedures
Instructions:
1. Divide the participants into groups of 3 or 4.
2. Give each group a home health-care kit. Tell them briefly about each
procedure. Use slides while explaining the procedures.
3. Ask each group to perform one or more procedures (choose procedures
according to availability of supplies and appropriateness). They may use the
Caregiver’s Handbook provided as a guide. The facilitator may also provide
feedback and instruction as needed.
4. Each group will role-play /demonstrate the procedures in front of all the
participants. In role-play, one participant will be the caregiver and the other
the person with the problem.
Feedback
After each group finishes their presentation, the facilitators and others can give
feedback on:
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•
•
•
If the procedures were clear to them
If communication was good in role-play
If the care giver was kind and sensitive
Session Summary
(20 minutes)
Finally, the facilitator summarises the session. Showing all the slides might take too
long, so only the key points should be explained. You can ask the participants if any
procedure was not clear. If they have any doubts about any of the procedures, only
those slides can be shown and explained.
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ffl Reference Material
The Home Health-Care Kit
How to care for your medicine kit
•
Keep all medicines out of the reach of children. Any medicine taken in large
doses can be poisonous.
•
Be sure all medicines are well labelled and that directions for use are kept
with each medicine. If caregiver/family members are illiterate, medicines
should be kept in containers of different colours to differentiate the use of the
medicines or pictures can be stuck on different containers, e.g. a picture of a
wound or a person feeling the forehead (for fever), etc.
•
Keep all medicines and medical supplies together in a clean, dry, cool place
free from cockroaches and rats. Protect instruments, gauze, and cotton wool
by wrapping them in clean plastic bags.
•
Keep an emergency supply of important medicines on hand at all times. Each
time one is used, replace it as soon as possible before the need for it arises.
•
Notice the date of expiry on each medicine. If not able to read, ask the health
worker who visits you to check it. If the date has passed or the medicine looks
spoiled, destroy it and get new medicine.
Each family should have the following things in their health care kit:
For wounds/skin problems/infection control
Sterile gauze pads...................................................
1-, 2-, and 3-inch gauze bandage rolls................
Clean cotton..............................................................
Soap...........................................................................
Scissors (clean, not rusty)......................................
Rubber gloves or plastic bags
Calamine lotion.........................................................
Bleach powder..........................................................
Towels or clean cotton cloth
Petroleum jelly or Vaseline....................................
Gentian violet crystals or solution.........................
Potassium permanganate crystals.......................
Betadine ointment
Common salt.
20
2 each
1 small package
1 bar
1 pair
1 bottle
500gm
1 jar
1 packet or bottle
1 packet
Oral medications:
Crocin, paracetamol - for fever and pain relief
ORS (ready made packets/recipe card for making ORS at home) - for diarrhoea
Other items required at home:
•
A bedpan.
•
If a commode is unavailable, an old chair can be cut in the centre and a
bucket put under to serve the same purpose.
•
Home remedies card
•
Caregiver's Manual
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Medical Kit for Primary Health-Care Centres
This kit is for the primary health-care centres to be used by the health-care providers.
Here, the patient is given the necessary medication before being referred to a
hospital.
Equipment/Medicines
1. Blood pressure apparatus
2. Stethoscope
3. Weighing machine
4. IV fluids DNS
5. RL (Ringer Lactate)
6. Venflon 18g
7. Venflon 20g
8. IV set
9. SV set
10. Spirit
11. Syringe
12. Needle
13. Bandage roll
14. Monocef
15. Deriphyllin
16. Decadron
17. Perinorm
18. Buscopan
19. Epsolin
20. Diclofenac
21. Electral powder
22. Paracetamol
23. Imodium
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Session 12: How to Choose a Doctor
Time: 15 minutes
Aim
This session is for advising the participants about choosing the right doctor and the
preparation needed before visiting a doctor. It also will teach them to give the
necessary personal information about themselves.
Objectives
By the end of the session participants will be able to:
•
Understand the importance of choosing the right doctor
•
Understand the importance of sharing their personal history with the doctor
Session activities:
Activity Time
(minutes)
1
15
Content
Materials
Slide(s)
2-7
Lecture on how to
choose a doctor
and the
information to be
disclosed to the
doctor
The following material for this session is included at the end of this chapter:
Reference Materials:
•
How to Choose a Doctor
Key points__________________________________________________________________
•
It is important to go to a qualified doctor who has treated people with
HIV/AIDS
•
Ask a community-health worker/social worker if you don’t know which doctor
to consult
•
It is helpful to write down or mentally prepare the questions you want to ask
the doctor
•
Always ask the doctor if you have read or heard of any “cure" from others
•
Tell the doctor about any serious illnesses, sexually transmitted diseases,
surgeries, miscarriages, abortions, pregnancies, or allergies in the past
•
The doctor should be told about current health problems, including the date
and place you learned you were infected with HIV
•
Let the doctor know:
o
Your sexual history (estimated number of partners, history of oral,
anal, and vaginal sex)
o
Herbs or non-prescription pills or liquids you are taking for any reason
o
Your method of birth control and how often you use it
o
Any addictive drugs you use
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Drinking and smoking habits
o Your immediate family's health history
Addictive drugs and alcohol can interfere with your treatment
o
•
J
Activity 1: Lecture (15 minutes)
Topic: How to choose the right doctor
Instructions:
This is a very short session that can be squeezed in whenever there is spare time
between sessions. You can present it in lecture form, as it is actually a set of
instructions that you can summarise from the slides provided.
At the end of the lecture you can answer any questions asked by the participants.
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Reference Material
How to Choose a Doctor
After a person has been diagnosed as having HIV infection, he or she should go to a
good doctor to decide on further treatment and advice. The best doctor would be one
who has experience in treating patients with HIV infection. He or she should be
someone who is patient and is available whenever the need arises. A community
health worker (CHW), a social worker, or any of the organisations dealing with HIV
may be helpful in suggesting a good doctor.
Preparing for appointments
•
It is helpful to write down or mentally prepare the questions you want to ask
the doctor. If you do this, the time spent with the doctor will be more valuable
than if you spend the time talking about whatever comes to your mind. If you
have read or heard of any “cure” from others it is always advisable to talk to
the doctor about it than just go for it, since it can even be harmful. If you have
any literature on a “cure" for HIV/AIDS, show it to the doctor so that its
implications can be explained to you.
•
Most doctors treating HIV infection are sensitive, caring people who respond
emotionally to their patients. They have seen an enormous amount of
suffering. At the first visit if the patient looks very frightened the doctor might
be very gentle and may not tell them about the harshest implications of the
disease. This is not because he doesn't know about the disease but to protect
the person from being too frightened.
When visiting your health-care provider for the first time, you should provide as much
information as you can about your medical history. The best way to do this is to write
down as much information as you can before seeing your doctor for the first time.
You should be prepared to discuss the following with your health-care provider:
•
Your medical history (any serious illnesses, sexually transmitted diseases,
surgeries, miscarriages, abortions, pregnancies, or allergies in the past).
•
Current health problems, including the date and place you learned you were
infected with HIV.
•
Sexual history (estimated number of partners, history of anal as well as
vaginal sex).
•
Menstrual cycle.
•
History of emotional health (anxiety, depression, moodiness, etc.).
•
Medications you are taking or have taken in the past.
•
Herbs or non-prescription pills or liquids you are taking for any reason.
•
Vaccination history.
•
Your method of birth control and how often you use it.
•
Any recreational drugs you use.
•
Drinking and smoking habits.
>
Your immediate family's health history.
Don't be shy! It is important that your doctor knows as much about your history as
possible. For example, sex and drug use are two things many people are
embarrassed to talk to their doctors about. However, they can both have a major
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impact on physical and mental health and should be discussed openly so that the
doctor will know to look for specific problems.
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Appendix A: Tips for Facilitators
Role of the Facilitator
During this course, the facilitator is expected to:
•
Help learners to develop self-awareness as well as insight into their role as
community caregivers
•
Help learners to gain knowledge that will be useful to them
•
Show learners the skills they will need
•
Provide opportunities for problem-solving and skill-building
•
Create an open and supportive environment for the discussion of issues and
concerns
In a participatory workshop, the role of a facilitator is to support the learning process.
The facilitator creates a supportive environment in which a “learning journey” can
take place. Participants explore their own experiences and those of others, identify
their strengths and weaknesses, and share their knowledge, ideas and concerns.
A facilitator does not need to be an “expert.” However, they do need to have some
basic professional and personal characteristics. Examples of these can be divided
into three main areas: Knowledge, skills and attitudes.
Facilitators do not have to have all three of these characteristics. However, they
should aim to have at least some from each area and to be open to developing more
as they gain experience.
What is teaching?
A good teacher:
•
Asks questions and listens closely to what people have to say
•
Gives out information and discusses how the information can be used
•
Checks to see whether information is understood and accepted
•
Answers questions
•
Shows people how to do a task correctly and helps them practice new skills
•
Helps to solve problems by helping people to discover their own solutions
What are the benefits of teaching?
The benefits of teaching are many. Besides the joy you will experience as a facilitator
knowing you are helping people to gain skills and understanding, the participants in
this course will:
•
Learn the facts they need to know
•
Be less afraid to perform tasks and ask for help when needed
•
Learn to do things that will help them and their families to stay healthy
•
Know how to identify and manage common HIV-related health problems in
their homes
•
Learn to recognise danger signs and learn when and how to seek help
•
Feel more confident and comfortable because they are more able to help
themselves and their family members
•
Be able to provide better care to those who are ill
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What should be taught?
It is common practice in India for family members to care to HIV-infected people at
home. This makes it very important for the caregiver to learn to protect the sick
person as well as the family members’ health. Skills and knowledge that are most
useful for them in this context should be taught during the training.
Remember!
A good teacher is not someone who puts ideas into other people’s heads.
Rather, he or she is someone who helps others build on their own ideas in
order to make discoveries for themselves. This included helping people to
think clearly about their needs and find suitable ways to meet them.
Tools for teaching
Flannel-graphs are good for talking with groups because you can keep making new
pictures. To make a flannel graph, cover a square board or piece of cardboard with a
flannel cloth. You can place different cut-out drawings or photos on it. Strips of
sandpaper or flannel glued to the backs of the cut-outs help them stick to the flannel
board.
Posters and displays. “A picture is worth a thousand words." Simple drawings with
a few words can be hung anywhere that people will look at them.
Models and demonstrations help get ideas across.
Teaching methods
Group Discussions
This is an informal way of exchanging ideas or opinions about the given topic within a
small group. This helps in reaching a common understanding about the given topic.
Role-plays
Here real-life situations are enacted. This helps in getting proper feedback about the
information presented - whether information was correct, communication was good,
etc.
Case studies
In this method, the participants thoroughly investigate the case presented to them
from various perspectives. This helps in analysing and understanding the situation
well.
Questionnaires
These are sets of questions used to get specific information. The right type of
questions should be asked in order to get the most out of questionnaires. E.g., when
you want to know the needs of a person with HIV.
Storytelling
When you have a hard time explaining something, a story, especially a true one, will
help make your point. Stories also make learning more interesting.
Play-acting
Stories that make important points can reach people with even more force if they are
acted out.
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Games
It will make participants open up and can also used for getting messages across.
Principles of effective communication in training:
•
Use language that is clear and common to all participants
•
Give permission to ask questions
•
Verify (check out) all assumptions
•
Get everyone’s opinion
•
Choose materials and content that have a common meaning
•
Avoid ambiguity (possibility of more than one interpretation)
•
Involve the learner or participant in decision-making
•
Have a positive attitude
•
Practice active listening
Active Listening and Good Questioning
Asking questions and listening are the most important skills for effective
communication and teaching. Active listening encourages open communication of
ideas and feelings by making participants feel heard and understood.
Tips for being an active listener:
•
Look at the person who is speaking to show that you are interested in what
they are saying and that you understand
•
Pay attention to your body language to show physically that you are listening
•
Listen to both what is said and how it is said to pick up the emotions as well
as the words
•
Summarise what you have heard to show that you have understood the main
points
Good questioning encourages people to go beyond simply providing information; it
prompts them to share their views.
Tips on good questioning:
•
Ask open-ended rather than closed questions (where the answer ends in a
“Yes’" or “No”). For example: “What was the meeting like?" rather than: “Did
you go to the meeting?"
•
Ask probing questions. E.g., “Could you explain what you meant by men not
talking to their sons about sex?”
•
Ask clarifying questions. E.g., “Is it that people lack condoms or that they lack
good-quality condoms?"
•
Ask questions about personal views and feelings. E.g., “What do you fee!
about local services for STI treatment?”
•
Always give and ask for feedback after group work or presentations.
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Summarising
Summarising is an important skill for drawing conclusions and results from course
activities.
Tips on good summarising:
•
State the positive points first
•
Highlight where there was agreement or differences
•
Reflect on people's comments rather than your own opinions
•
Focus on just the main points that have been made
To ensure that the participants have learned the key messages during the session,
they must help in the summarisation process. They can also be asked to list the “take
home” messages they have learned during the session. This should be listed on a
flipchart or whiteboard for all the participants to see and acknowledge. Then your
summary slide can be shown and the tips stated above put into practice. Asking the
participants to help summarise ensures that they have received the key message for
the session.
Guidelines for communicating about HIV/AIDS
These guidelines are intended to help ensure accurate, consistent and positive
HIV/AIDS content in talking, educating, or writing about HIV/AIDS, those who are
HIV-positive, as well as orphans and vulnerable children. Words have power and
positive words can reframe the way we and our communities think about HIV/AIDS.
Positive, nonjudgmental messages, both in verbal and non-verbal gestures, can
combat stigma and discrimination.
Refer to people who are HIV-infected as “people living with HIV/AIDS” or “HIV
positive persons," rather than “AIDS patients” or “AIDS sufferers.” "Patient” or
“sufferer” implies that people living with HIV/AIDS are sick all of the time, which is not
typically the case. This kind of language can also decrease hope. Also refrain from
referring to people living with HIV/AIDS as “PLHA” or other abbreviations, as it
dehumanises individuals to be referred to as an abbreviation.
Do not use “AIDS victims;” use “people with AIDS.” “Victims" robs people with AIDS
of dignity and hope, and inaccurately implies that they are passive about their health.
Instead of saying one is “dying from AIDS,” say they are “living with AIDS.” At any
given time we are all “dying,” as that is the inevitable outcome of life. People with
AIDS can live longer and richer lives when living positively and getting support for
living positively. Referring to someone as “dying from AIDS" makes the situation
sound hopeless.
When referring to children living with HIV/AIDS, use nonjudgmental, specific wording,
such as "the child was born HIV-positive,” rather than "the child was innocent, having
been born infected." Designating children as “innocent victims" implies that all other
people infected with HIV are “guilty" for having become infected. Also refrain from
referring to orphans and vulnerable children as “OVC" or children affected by AIDS
as “CABA" or other abbreviations, as it dehumanises individuals to be referred to as
an abbreviation.
I
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Instead of referring to “high-risk groups,” use the term “people engaging in high-risk
behaviour." No group is predisposed to HIV infection and should not be stereotyped
as such What individuals do causes infection, not who they are.
When using examples of people living with HIV/AIDS or situations around HIV as
illustrations, do not use actual names of anyone in your community. Because of the
stigma and discrimination surrounding HIV/AIDS, it is important to protect the privacy
of people living with HIV/AIDS and their families. Confidentiality should be
paramount. Only the person living with HIV/AIDS has the right to decide to disclose
his or her status to others.
When there are people living with HIV/AIDS who are open about their status, be the
first to share a meal, put your arm around the person, or show your acceptance and
support through casual touch.
Reinforce at every opportunity that AIDS is caused by a virus like measles, colds,
and many other diseases. Many illnesses are related to how we live and should not
be a reason for judgment or discrimination (there are not “good” or “bad" diseases).
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Appendix B: Home-Based Care Course Evaluation Form
(Adapted from CHBC Training/MYANMAR)
Note: Please answer the following questions (tick off options when indicated) and
give any additional comments you may have regarding the course. We are interested
in knowing how useful this course has been in terms of providing orientation on
home-based care and for planning the work in relation to establishing the HBC
programme.
Any suggestions you may have in improving the future HBC workshops are very
welcome. Thank you for your contribution.
1.
Has the workshop been helpful in terms of understanding community home
based care? (Circle one option)
Very much
Somewhat
Not much
2. As a result of the workshop do you think you are ready to put into practice the
HBC program that was discussed in your group? (Circle one option)
Yes
Somewhat
Not Much
3. What subject/topic was easiest to understand and why?
4. What subject / topic was hardest to understand and why?
5. What could be improved in the future HBC workshop?
6. Was the choice of subjects well chosen? (Circle one)
Yes
No
If no, please comment on how this could be made better.
7.
Do you have suggestions for other subjects to be included in the future HBC
workshops? (Please specify)
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8. Time spent on group work was (circle one):
Too much
Just right
Too little
More time should be spent on: (please specify)
9. What was the least useful part of the workshop and why?
10. What was the most useful part of the workshop and why?
11. How was the organisation of the workshop? (Circle one)
Good
Average
Not good
12. Any other comments?
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Appendix C: Needs-Assessment Questionnaire for Persons
Living with HIV/AIDS
(Adapted from CARE/MYANMAR)
Explanation for home-based care staff
People Living with HIV/AIDS means a person infected with HIV/AIDS. Close family
members, e g., the spouse, parents, children and others might also be HIV- positive
and living with HIV/AIDS.
This questionnaire can be used in interviewing:
• People living with HIV/AIDS, who show no symptoms yet
• People living with HIV/AIDS, whose general health condition is declining
• Family members who are living in the same household
• The family of a person who died of HIV/AIDS
If the HBC staff knows the person with HIV infection personally, then he/she can
interview directly.
Counselling trainees or other staff may also interview people with HIV/AIDS.
Whoever conducts the interview should be careful not to breach confidentiality (by
letting others know that the person has HIV/AIDS) and not to stigmatise people with
HIV infection.
The purpose of this questionnaire is not to find out who or how many people have
HIV/AIDS but rather to find out about the needs of people living with HIV/AIDS.
HBC Facilitator’s Guide
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Revised May 2005
Hr//AIDS
AppCl'K
Needs Assessment Questionnaire for Persons Living with HIV/AIDS
*lt is not necessary to note the name or the family of the person living with HIV/AIDS in
this interview form.
Date of interview:
Place:
Village(s)/community covered by the HBC programme:
Name of the Interviewer:
Interviewer’s Designation/Occupation:
The following questions are structured in order to find out the needs of persons living
with HIV/AIDS (abbreviated as PLHA). Either the PLHA or a close family member
can respond to the questions.
Please answer with a check [>/] each relevant answer in the given space or write
down the answer wherever necessary.
Diagnosis:
How do you know that the person you are interviewing is living with HIV/AIDS?
Blood test
[]
Doctor's diagnosis
[]
Clinical signs
[]
Other means
[]
1. Respondent’s data:
PLHA’s personal data:
If interviewing a family member, also fill in
personal data for the family member:
Age
Age
Sex
[]M
[]F
Sex
[]M
Transgender
[]Yes []No
Single
[]Yes []No
Single
[]Yes
[]No
Married
[JYes [JNo
Married
[]Yes
[]No
Widow/Widower
[JYes [JNo
Widow/Widower
[]Yes []No
Divorced
[]Yes
Separated
Urban or Rural
HBC Facilitator's Guide
[]F
Divorced
[JYes [JNo
Separated
[JYes [JNo
[ JYes [ ]No
Urban or Rural
[JUrban [JRural
[JUrban [JRural
Relationship to
PLHA
[]No
I
IX
Revised May 2005
Hivws
2. Did you have your blood tested?
3. Do the family members know about the result?
4. With whom do you (the PLHA) live?
5. Do you have a job now?
[ JYes
[ JYes
[JNo
[JNo
[]Yes
[]No
[]Yes
[]No
7. Is your income enough for a living?
[]Yes
[]No
8. Are your savings enough for a living?
[]Yes
[JNo
9. Do other family members support your living?
[]Yes
[JNo
10. Do you have financial problems and
a shortage of money?
[JYes
[JNo
[JYes
[JNo
If yes, what is the job?
If no, did you have a job before?
If yes, what was the job before?.
6. If you stopped working, what was the
reason?
11. Have you suffered from any chronic and/or
serious illness before?
If yes, what was it?
12. Did you seek consultation at the hospital/clinic before? (tick off as relevant)
[ JNo consultation at all
[ JConsultation to a general practitioner
[ JHospitalisation once
[ JHospitalisation several times
13. If you consulted a general practitioner, what was the reason? (tick off)
[ JPrefers to go to the general practitioner rather than other health providers
[ JCIinics/ hospitals were not willing to treat PLHA
[ JAny other reason/s:
14. What are your present health needs: (tick off all relevant answers)
[ JOral multivitamins
[ Jlnjection or infusion of vitamins and other supplements
[ JGetting enough rest
[ JTreatment in hospital
[ Jlndigenous medicines
[ JBetter nutrition/food
[ JTablets (medicines) to relieve suffering
[ Jlnjections to relieve suffering
HBC Facilitator’s Guide
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Revised May 2005
HiV/AIOS
15. What is necessary in order to fulfill these needs? (tick all that apply)
[ JMoney
[ Jlndigenous medicine
[ JWestern medicine
[ JDoctor who can take care of her or him
[ JHospital that can take care of her or him
[ JFamily member who can take care of her or him
[ JKnowledge about healthy living, nutrition and care
Give reasons for your choices above (Why is it necessary?)
16. Where do you prefer to stay when you are ill?
[ JAt home. Why?
[ ]ln hospital. Why?
17. Do family members take care of you while you are ill?
[ JThey do
[ JThey don’t
[ JThey want to, but they need training or are unable for other reasons:
18. Which of these activities do you enjoy? (tick all that apply)
[ JWatching movies
[ JReading books
[ JKeeping busy with religious matters
[ JHaving a conversation with a close friend
[ jListening to/singing songs
[ JShopping
[ JHaving sex
[ JDrinking alcohol
[ JTaking drugs
[ JDoing physical exercise/watching sports
[ JKeeping pets
[ JVisiting/ being out with friends
19. In order for you to do the activities above, what is needed? (tick all that apply)
[ JKnowledge
[ ]Money
[ ]Friends
[ JGood health
[ ]Time
[ ]Others, please specify:
HBC Facilitator's Guide
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Revised May 2005
Appendix C:
-
20. If you have a friend who has knowledge about HIV/AIDS and is someone you
trust and who is faithful to you, will you disclose your problem to him/her?
[ ]Yes. Why?
[ ]No. Why?
21. Where do you prefer to be cared for when you are ill?
[ JHospital
(JCIinic
[ ]Stay at home and get help from the family
22. If you are cared for at home what do you need help with? (tick all that apply)
[ JWashing and other personal hygiene
[ JEating
(JTaking care of the children
[ JOther, please specify:
HBC Facilitator’s Guide
xii
Revised May 2005
•u
F -'
Appendix D: Criteria for Nutritional Support Form
| ID No of the member:
Age:
Date of birth:
| Earning member(s) of the family (check
all that apply)
i
[ Jself [ Jspouse [ Jparent [ Jchildren
[ Jothers
j Total monthly income (from all sources)
Rs.
; No of family members:
Male:
Female:
| No of dependents:
Male:
Female:
I
Present health condition (check one)
. [ JVery Poor [ JPoor [ JNormal [ JGood
Does he or she take regular meals every
day?
[]Yes
[]No
j Does he or she take treatment for any
: other chronic illness except HIV/AIDS?
[ ]Yes
If yes, how frequently?
If yes, specify:
[ ]No
Medical evaluation:
Height (cm):
Present Weight (kg):
Previous Weight (kg):
Hb:
Blood Pressure:
Pulse:
j Any specific deficiencies?
Vitamin
[]Yes []No
Protein
[]Yes []No
Carbohydrates
[ ]Yes [ ]No
State reasons for malnutrition:
HBC Facilitator’s Guide
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Revised May 2005
Social Worker/Community-Health Worker s Recommendations
Reasons for recommending the PLHA for nutritional support: (check all that
apply)
[ ] Inability to work
[ ] Increased number of dependents
i
[ ] Poor living conditions
[ ] General physical condition
[ ] Specific deficiencies
[ ] Others (specify)
Doctor’s recommendations: (check all that apply)
; [ ] For improving weight
[ ] For increasing vitamin content
[ ] For increasing protein content
[ ] For increasing carbohydrate content
[ ] For improving dietary habits
[ ] Others (Specify)
Severe
Moderate
Mild
Food items
[J
[J
[]
Vitamin content
[]
[]
[]
Protein content
[]
[]
[]
Carbohydrate content
[]
[]
[J
Fat content
(1
[J
Deficiency Category:
Nutrition support to be provided for
i
months.
Date of assessment:
Place:
Date of follow-up:
Recommendation for category:
Community-health worker signature:
Verified by social worker (sign name)
Approved by medical officer (sign name)
HBC Facilitator’s Guide
X1V
Revised May 2005
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