Scaling Up the Continuum of Care for People Living with HIV in Asia and the Pacific: A Toolkit for Implementors
Item
- Title
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Scaling Up the Continuum of Care
for People Living with HIV in
Asia and the Pacific:
A Toolkit for Implementors - extracted text
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Scaling Up the Continuum of Care
for People Living with HIV in
Asia and the Pacific:
/\ Toolkit for Implementors
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A USAID
Family Health
International
ISBN: 978-974-8290-46-1
This publication is available on the Internet at www.fhi.org
Copies may be requested from:
Family Health International, Asia/Pacific Regional Office, 19th Floor, Tower 3, Sindhorn Building,
130-132 Wireless Road, Lumpini, Phatumwan, Bangkok 10330,Thailand, e-mail: sunee@flii.bkk.org
© Family Health International 2007
All rights reserved. This work may be freely reviewed, quoted, reproduced,, or translated,
provided it is not for commercial gain. Partial or adaptive use of this work is also welcome,
provided permission is first obtained from FHI. FHI must be. prominently acknowledged in
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Requests for publications, or for permission to reproduce, translate or adapt this publication
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This publication contains the collective views of an international group of experts and does not
necessarily represent the decisions or the stated policy of Family Health International.
Printed in Bangkok
Scaling Up the Continuum of Care
for People Living with HIV in
Asia and the Pacific:
A Toolkit for Implementors
*
Z USAID
► KOM I Hl M-KRlCAN PtOH-l
W
'■ Family Health
* AInternational
A
This Toolkit is the result of a broad collaboration among many partners who came together
to document the experiences of people living with HIV, governments, NGOs and others in
implementing the Continuum of Care in the Asia-Pacific Region. The development of the
Toolkit was led by a technical working group whose members came from a diverse set of
backgrounds and organizations. Family Health International coordinated the development
of this Toolkit with significant technical guidance and support from the World Health
Organization, Regional Office for South-East Asia and the WHO Representative Office in
Vietnam. The United States Agency for International Development provided funding for the
development, printing and dissemination of this Toolkit.
Gratitude is expressed to the members of the technical working group who contributed
significant time and energy while providing thoughtful and thought-provoking inputs
to the development of the Toolkit. In addition, the valuable efforts of other CoC leaders
and implementers who contributed to the Toolkit are acknowledged. Finally, appreciation
is expressed to the authors who wrote the various sections that comprise the Toolkit.
The names of the members of the technical working group, authors, editors and other
contributors to this Toolkit are listed on the following page.
V
CONTRIBUTORS
Primary Authors and Editors
Chawalit Natpratan, MD, MSc
Kimberly Green, MA
Asia Pacific Regional Office
Family Health International
Family Health International
Bangkok, Thailand
Jakarta, Indonesia
Eric van Praag, MD, MPH
Robert McPherson, PhD
Family Health International
Consultant
Dar es Salaam, Tanzania
Kathmandu, Nepal
Masami Fujita, MD
HIV Unit, Department of Communicable
Laurie Gulaid, MSPH
Consultant
Mbabane, Swaziland
Diseases
WHO Representative Office in Viet Nam
Hanoi, Viet Nam
Chris Parker
Consultant
New Delhi, India
Ying-Ru Lo, MD, DTMH
HIV Unit, Department of Communicable
Diseases
WHO Regional Office for South-East Asia
New Delhi, India
Contributing Authors and Reviewers
Jeanine M. Bardon, PhD
Celine Costello Daly, MD, MPH
Asia Pacific Regional Office
Technical Support, Public Health Programs
Family Health International
Asia Pacific Regional Office
Bangkok, Thailand
Family Health International
Bangkok, Thailand
Rachel Burdon, MBBS, MPH, FAFPHM, FRACGP
Care and Treatment Unit
Pratin Dharmarak, M.Ed.St.
Family Health International
Consultant
Hanoi, Viet Nam
Family Health International
Bangkok, Thailand
Kathleen Casey, MA(Psychology),
Dip.Ed, DipEd.Stud
Cheng Feng, MD, MPH
Public Health Programs
Family Health International
Asia Pacific Regional Office
Family Health International
Bangkok, Thailand
Beijing, China
Philippe Girault, RN, MS
Asia Pacific Regional Office
Chutima Chomsookprakit
Family Health International
Asia Pacific Regional Office
Bangkok, Thailand
Family Health International
Bangkok, Thailand
VI
Chen Jie, MD
Office of Guangxi Working Committee for AIDS
Prevention and Control
Nanning, China
Rajendra Pant, MBBS, MPH
National Center for AIDS and STD Control
Kathmandu, Nepal
Vu Ngoc Phinh, MD, MPH
Nigoon Jitthai, PhD, MPH
Family Health International
Migrant Health Program
International Organization for Migration (IOM)
Hanoi, Viet Nam
Bangkok, Thailand
Nguyen Van Kinh, MD
Viet Nam Administration of HIV/AIDS Control
Hanoi, Viet Nam
Chaiyos Kunanusont, MD, MPH, PhD
CST for East and South-East Asia
UNFPA
Bangkok, Thailand
Zhong Li, MMgt
Family Health International
Pingxiang, China
Shiba Phurailatpam
Bangkok, Thailand
Tess Prombuth, BSN
Asia Pacific Regional Office
Family Health International
Bangkok, Thailand
Dimitri Prybylski, PhD, MPH
Asia Pacific Regional Office
Family Health International
Bangkok, Thailand
Ganesh Bahadur Singh, MBBS, DGO
Seti Zonal Hospital
Qian Liu, PhD
Dhangadi, Nepal
Department of Sociology
Renmin University of China
Beijing, China
Richard Steen PA, MPH
HIV Unit, Department of Communicable
Gayle H. Martin, DrPH
WHO Regional Office for South-East Asia
Constella Futures
New Delhi, India
Washington DC, USA
Diseases
Global AIDS Program
Lisa Stevens, MD
Consultant
Family Health International
U.S. Centers for Disease Control and Prevention
Kathmandu, Nepal
Michelle S. McConnell, MD
(CDC)
Bangkok, Thailand
Mike Merrigan, DrPH
Family Health International
Abuja, Nigeria
Brigitte Tenni, MPH
Thai Network of People Living with HIV/AIDS
(TNP+)
Bangkok, Thailand
Mean Chhi Vun, MD, MPH
Sally Moore, MPH
Consultant
Byron Bay, Australia
National Centre for HIV/AIDS, Dermatology
and STDs
Phnom Penh, Cambodia
Song Ngak, MD, MSc
Liu Wei, MD, MPH
Family Health International
Guangxi Center for HIV/AIDS Prevention and
Phnom Penh, Cambodia
Control
Guangxi CDC
Prakash Pandey, MBA
Family Health International
Nanning, China
Dhangadi, Nepal
VII
LIST OF ACRONYMS
X
EXECUTIVE SUMMARY
XI
BACKGROUND
1
1.
HIV in the Asia-Pacific Region
1
2.
The global response to needs of PLHIV for care, treatment and support
4
3.
Purpose and structure of the Toolkit
4
1
2
3
4
VIII
INTRODUCTION TO THE CONTINUUM OF CARE
7
1.
What is the Continuum of Care?
7
2.
Guiding principles for the Continuum of Care
13
3.
Why establish a Continuum of Care?
14
4.
The core services of the Continuum of Care
17
CONTINUUM OF CARE COUNTRY PROFILES
19
1.
Cambodia: effective leadership and coordination from national government
19
2.
China: developing local solutions within a national policy framework
20
3.
Nepal: developing a CoC during civil conflict and a migration-driven epidemic
22
4.
Thailand: PLHIV lead the response
24
5.
Viet Nam: national leadership-of a coordinated response
25
MAKE IT HAPPEN AT THE LOCAL LEVEL:
ESTABLISHING THE CONTINUUM OF CARE
27
Building Block 1:
Get started - gathering support and assessing needs
29
Building Block 2:
Develop the network - creating coordination and referral systems
36
Building Block 3:
Establish services - improving existing services and integrating new ones
44
Building Block 4:
Involve PLHIV - partners in leading, planning and service provision
57
Building Block 5:
Create acceptance - enabling PLHIV and their families to use the CoC
63
5
6
Building Block 6:
Build capacity - developing human resources and tools to support the CoC
66
NATIONAL-LEVEL GUIDANCE FOR THE COC:
FACILITATING LOCAL-LEVEL EFFORTS
71
1.
What's being done? An overview of national-level support for the CoC
71
2.
Providing guidance: why and how to develop
and use a national CoC framework
72
IMPROVING THE COC: USING MONITORING AND EVALUATION TO ENHANCE
ACCESS TO AND QUALITY OF SERVICES AND SYSTEMS
Using routine data to monitor CoC performance
79
2.
Making use of review techniques to improve quality of care and the CoC
81
3.
4.
Evaluating the benefits clients receive from the CoC through special studies
81
What do we need to know? Improving the monitoring
and evaluation of the CoC
82
1.
7
79
WHERE ARE WE GOING? THE FUTURE OF THE CONTINUUM OF CARE
1.
Integrating prevention services into the CoC
2.
Increasing access to HIV services among those most at risk
3.
Establishing family-centred care
4.
5.
Expanding services outside of the health sector
6.
Establishing a national CoC framework
Role of the Continuum of Care in achieving universal access
83
83
84
85
87
88
88
BIBLIOGRAPHY
90
ANNEX 1: GLOSSARY OF COC SERVICE DESCRIPTIONS
93
ANNEX 2: CONTINUUM OF CARE FOR PEOPLE LIVING WITH HIV
IMPLEMENTATION CHECKLIST
97
3
IX
LIST OF ACRONYMS
[I
■-
<'■•7
AAF
AIDS Access Foundation
MSF
Medicins Sans Frontieres
AIDS
acquired immunodeficiency
syndrome
MSM
men having sex with men
ANC
antenatal care
NCHADS National Centre for HIV/AIDS,
Dermatology and STDs
APR
Asia-Pacific Region
NGO
non-governmental organization
ART
antiretroviral therapy
NSP
needle and syringe programme
ARV
antiretroviral (drug)
01
opportunistic infection
CBO
community-based organization
OPC
outpatient clinic
ccc
comprehensive and continuous
OST
opioid substitution therapy
OVC
orphans and vulnerable children
PCP
Pneumocytis carinii pneumonia
(also known as Pneumocystis
jiroveci pneumonia)
PEP
post-exposure prophylaxis
PITC
provider-initiated testing and
counselling
PLHIV
people living with HIV
care centres
CCS
comprehensive care site
CHBC
community and home-based care
CoC
continuum of care
CoC-CC
Continuum of Care Coordination
Committee
CT
counselling and testing
DCC
day care centres
FCC
family-centred care
GFATM
GIPA
QA/QI
quality assurance/quality
improvement
greater involvement of people,
living with HIV/AID5
STI
sexually transmitted infection
TB
tuberculosis
TB/HIV
the relationship between TB and
HIV and the need to link care and
treatment
TNP+
Thai Network for People Living
Family Health International
HCMC
Ho Chi Minh City
HIV
human immunodeficiency virus
health management information
system
X
prevention of mother-to-child
transmission
Global Fund for AIDS, Tuberculosis
and Malaria
FHI
HMIS
PMTCT
with HIV/AIDS
IDU
injecting drug user
TWG
technical working group
M&E
monitoring and evaluation
USAID
MMM
Mondol Mith Cheui Mith (i.e. Friends
United States Agency for
International Development
Helping Friends Centre)
VCT
voluntary counselling and testing
MMT
methadone maintenance treatment
WHO
World Health Organization
MoH
Ministry of Health
MoPH
Ministry of Public Health
€
Millions of people in the Asia-Pacific Region are affected by HIV.The incidence of HIV continues
to rise at an alarming rate in some parts of the region—particularly among populations with
high-risk behaviours, including injecting drug users (IDUs), men who have sex with men
(MSM), sex workers, prisoners, migrants and youth. Efforts to provide care, treatment and
support to people living with HIV (PLHIV) have achieved some laudable successes, but the
majority of PLHIV are still not able to access important services—for example, it is estimated
that only 19% of PLHIV in East, South and South-East Asia who need ART currently receive
it.1 While care, treatment and support services for HIV are increasingly available throughout
the region, seldom are they linked and coordinated in a way that optimizes PLHIV access and
adherence to treatment.
As global capacity regarding the HIV epidemic and resources to combat it have expanded,
policy-makers and practitioners have begun to promote a more integrated, comprehensive
response to PLHIV needs for care, treatment and support. Some countries in the region have
developed a strategy for organizing and providing these services known as the Continuum of
Care (CoC). The CoC is defined as a network of linked, coordinated care, treatment and support
services for HIV that are provided by collaborating organizations. The CoC network consists
of both the services themselves as well as the overarching coordination framework that
makes the CoC stronger and more effective than the sum of the individual services. The CoC
creates linkages between services provided in homes, communities and institutions and thus
improves the access of PLHIV to the services they need. The CoC is tailored to meet local needs
and circumstances and therefore takes a unique form in each location where it is introduced.
Growing experience with the CoC approach in Thailand, Cambodia, Viet Nam, China, Nepal
and other countries in the region—coupled with the impressive results .achieved through
the CoC—have inspired a collaboration of partners to develop this Toolkit. The Continuum
of Care Toolkit offers guidance based on experiences with the CoC in diverse settings across
the Asia-Pacific Region that will assist planners and managers to establish or strengthen
their own CoCs. This Toolkit, which is structured in seven sections, provides ideas, strategies,
procedures and tools for CoC managers to create networks that link care, treatment and
support services for HIV in their own localities according to their own unique needs. Key
sections of the Toolkit include (i) an introduction to and rationale for the CoC approach, (ii)
profiles of the development of the CoC in five countries from the region, (iii) specific advice on
how to build a CoC at the local level, (iv) a review of national-level support for the CoC across
the region, (v) an overview of how CoC initiatives can be monitored and evaluated, and (vi)
future directions for the CoC in the region. The need for and means of including prevention
services within the CoC network are also discussed.
Bringing together partners from different sectors of society to develop inclusive, coordinated
programmes and high-quality services is a challenging but ultimately rewarding task. The
ideas presented in this Toolkit should prove useful to governments and their partners as they
respond to the HIV epidemic and work to increase access to locally appropriate care, Treatment
and support services for PLHIV and their families throughout Asia and the Pacific.
1
V\/HO, UNAIDS, UNICEF. Towards universal access: scaling up priomy HIV/AIDS interventions in the health sector:
progress report, April 200/. Geneva, WHO, 2007
XI
BACKGROUND
•i
__________
laasll
_____
1.
HIV in the Asia-Pacific Region
Millions of people in the Asia-Pacific Region are affected by the impact of HIV on health,
human rights and development. Because of the sizeable populations of countries in the
Asia-Pacific Region, large numbers of people live with HIV, even in countries and areas
where the HIV prevalence is low. UNAIDS estimates that during 2006, 8.61 million people in
the region were living with HIV—31,000 of whom were children—and that 594,000 people
died of AIDS. During 2006 alone, 867,100 people in the region were newly infected with
HIV.2 Estimates of HIV prevalence range from less than 0.1 % in some countries of the region
to 1.8% in Papua New Guinea. Figure 1 presents an overview of the prevalence of HIV in
countries of the Asia-Pacific Region.
Figure 1: Prevalence of HIV among adults in Asia, 2005
-A
-
/
■>
L A'i
Adult prevalence %
Mi 15-3.0%
W® 1.0-<1.5%
SOB 0.5-<1.0%
0.1-<0.5%
L
V
/
1
<0.1%
L
Source: 2006 Report on the global AIDS epidemic. Geneva, UNAIDS, 2006.
*
1
A 1.1 Nt. I l‘ I II E CON I I N V UM Of CAKE It) R I i < i C I i
II I \
Behaviours that put people at risk of infection with HIV drive the epidemic in the region.3
While countries in the region experience different epidemics (see Figure 2), infection due
to high-risk behaviours such as injecting drug use (IDU) and unprotected sex between
commercial sex workers and their clients and among men who have sex with men (MSM)
is common to most countries. With individuals involved in multiple risk behaviours such as
both sharing needles and syringes and engaging in unprotected sex, the spread of HIV is a
result of interlinking networks of risk behaviours.
HIV transmission is not limited to individuals who practice high-risk behaviours. Data from
countries that include Thailand, Cambodia, China and India indicate that once the epidemic
is established in high-risk populations, HIV can spread into the general adult population
through sex with spouses and partners while newborns can be infected through perinatal
transmission. With the prevalence of HIV at the national level exceeding 1%, Papua New
Guinea, Cambodia, Myanmar and Thailand already face generalized epidemics. India,
with a population surpassing one billion, has an HIV prevalence rate of 0.9% and is on the
verge of a generalized epidemic with six states showing HIV prevalence above 1% among
pregnant women attending antenatal care during 2005.4The prevalence of HIV in defined
areas of several other countries, including China, Viet Nam and Indonesia, easily exceeds the
threshold of a generalized epidemic.5 These overwhelming problems clearly require urgent,
wide-scale action to mitigate the impact of HIV and minimize further transmission.
While efforts are being made to achieve the goal of universal access to comprehensive
prevention, treatment, care and support, HIV continues to spread and more people are
becoming infected. The vast majority of at-risk populations and PLHIV still do not have access
to the services they need. The region has seen improvements in access to anti-retroviral
therapy (ART: see Figure 3) and prevention of maternal-to-child transmission (PMTCT), yet
coverage is still low. Asia bears 21% of the global treatment need and only 19% of PLHIV in
Asia who need ART currently receive it.6
Figure 2: Modes of HIV transmission in select Asian countries
Data form Nepal are’ based on reported HIV infections (cumulative)
100
««
----- ------------
80
I_
g
<u
60 --------
s
s
40----
s-
cc
20
0
India
Heterosexual
Thailand
>3 Injecting drug use
Myanmar
Unsafe blood
Nepal
Indonesia
Perinatal
Source: HIV/AIDS in the South f-ast Asia Region: March 2007. Delhi, WHO South-East Asia Regional Office, 2007.
2
H Others
r
l M ('I CAUK IOil HOP I F I I
I
‘-
Barriers to accessing services
Barriers to increasing access to HIV services include stigma and discrimination, lack of
coordination and planning among services that together form a comprehensive HIV
programme, under-resourced health-care systems, and donor or government policies.
a
Widespread stigma and discrimination against PLHIV continue to hamper care and
prevention initiatives in most countries in the region. Many PLHIV practice illegal
and highly stigmatized behaviours such as drug use and sex work and may not be
welcome in health facilities. HIV prevention activities often have the undesirable
effect of increasing stigma towards PLHIV and further marginalizing them, thus
decreasing their access to care, treatment and support.
n
Many programmes that offer care, treatment and support to PLHIV operate vertically—
that is, they focus on their own specific area of service and do not develop adequate
links with other services that PLHIV require. Examples of this include PMTCT services
that are not connected to community-based clinics or stand-alone HIV clinics that
are not linked to community and home-based care (CHBC) services. When services
are not well-linked, PLHIV, their families and partners may not be aware that the
services they need even exist. Programmes with weak referral linkages often reach
only a small percentage of those in need and achieve minimal impact.
Countries such as Thailand that have built on existing resources and infrastructure
to implement comprehensive, coordinated services—such as the continuous and
comprehensive care centres (CCCs) that have been established in 220 sites—have
successfully expanded access to care and treatment services to the point where universal
access to treatment for adults and children is within grasp.7 There is an urgent need to scale
up—and equally important, a need to link and coordinate—care, treatment, support and
prevention services in order to prevent future infections, reduce morbidity and extend the
lives of those already infected.
Figure 3: Number of people on antiretroviral therapy
in South-East Asia, 2003-2006
200000 -
178483
180000 -------------160000 --------------
140000
i
I
119221
120000 ...............
100000
H
80 000
60607
60 000
-
40000
-
BSS
ill
17957
20 000
0
Dec-03
Dec-04
Dec-05
technical Seminar, 15 May 2007
Source: WHO Regional Office for South-East Asia
€
Dec-06
Sl
THE CONI INl I'M (>i < ARE FOR I’lORI.E I.IVIM, U I I II III -.
The global response to needs of PLHIV for care, treatment
and support
2.
World leaders at the United Nations General Assembly Special Session on HIV/AIDS in
2001 made unprecedented commitments to strengthen HIV care, treatment, support and
prevention. Included among these commitments are the Millennium Development Goals,
one of which pledges to reverse the spread of the HIV epidemic by 2015.9 Global HIV-related
targets have become increasingly ambitious as antiretroviral (ARV) drugs have become more
accessible and global resources for HIV/AIDS have increased through the Global Fund for
AIDS, Tuberculosis and Malaria (GFATM) and other sources. These targets include the 3 by 5
Initiative to treat three million PLHIV by 200510 and the US President's Emergency Plan for
AIDS Relief (PEPFAR) that aims to treat two million PLHIV with ARV therapy (ART), prevent
seven million new HIV infections, and provide care for ten million people affected by HIV.11
Meaningful increases in the provision of ARV drugs in many countries will be dependent
on local production or importation of generic drugs. World leaders and their local and
international partners continue to commit increased resources across all aspects of the
response to HIV.
In December 2005, the United Nations General Assembly adopted a resolution to scale up
HIV care, treatment, support and prevention services with the aim of coming as close as
possible to achieving the goal of universal access to services by 2010.12 Most governments
in the region have set targets for universal access but many are still far from reaching them.
Purpose and structure of the Toolkit
3.
One of the central challenges of the CoC is to bring together partner organizations from
different sectors of society and create a framework within which they work together to
coordinate programming and expand the provision of high-quality services. Growing
experience with the CoC approach across the Asia-Pacific Region, coupled with the
impressive results that have been achieved through its use, have led to the decision to
document these important experiences. This Toolkit provides practical guidance to policy
makers, service planners and programme implementers and is particularly intended for use
at the national and district levels across the region.
The toolkit is laid out in seven sections:
3.
Section One provides background for the Toolkit.
Section Two defines the CoC, presents its principles, describes its components and the
rationale for its use as a guiding framework, and outlines the basic structure of the CoC.
The process of developing the CoC in five countries in the Asia-Pacific Region is profiled
4.
in Section Three.
Section Four builds on this information by outlining how to plan and build a CoC at the
5.
local level.
Section Five presents an explanation of the components of a national CoC framework as
6.
well as the process for its establishment.
Section Six presents an overview of how CoC initiatives can be evaluated and
1.
2.
7.
4
monitored.
Section Seven outlines next steps regarding the future of the CoC, including ideas
regarding the role of the CoC in achieving universal access goals.
ip
8.
ini
COX I I N i; I'M Ol
<ARh I OH P E O P I I- IIVINC Willi Ills
Annex One describes the various services that are provided through many CoCs
throughout the region, while Annex Two presents an abbreviated, checklist version of
the Toolkit that serves as a companion to this document.
Throughout the Toolkit, country-specific examples are used to highlight issues, principles,
strategies and lessons learned. A set of annexes that are included in the CD-ROM that
accompanies this Toolkit provides detailed information on tools, planning structures
and approaches that have proven useful in some settings as well as a list of additional
resources.
2
AIDS epidemic update: special report on HIV/AIDS: Decembei 2006. Genova. UNAIDS, WHO, 2006.
3
HIV/AIDS in the South-East Asia Region: March 2007. New Delhi, WHO Regional Office for South-East Asia. 2007.
4
Ibid.
5
AIDS epidemic update: special report on HIV/AIDS: December 2006. Geneva, UNAIDS, WHO, 2006.
6
WHO, UNAIDS, UNICEF. Towards universal access: scaling up priority HIV/AIDS interventions in the health sector:
progress report. April 2007. Geneva, WHO, 2007.
7
Ibid.
8
United Nations General Assembly. Special Session on HIV/AIDS. Declaration of Commitment on HIV/AIDS. United
Nations, 2001.
9
The Millennium Development Goals Report 2006. New York, United Nations, 2006.
10
Treating 3 million by 2005: making it happen: rhe WHO strategy. Paris, WHO, 2003.
11
The president's emergency plan for AIDS relief: U.S. five-year global HIV/AIDS strategy. Washington DC, Office of the
United States Global AIDS Coordinator, 2004.
12
United Nations General Assembly. 60th Session Resolution 20/62. Political Declaration on HIV/AIDS. United Nations,
2006.
*
5
INTRODUCTION TO THE CONT
111111
1.
What is the Continuum of Care?
People living with HIV and their families have emotional, social, physical and spiritual needs
that change over time. They often must cope with the effects of stigma and discrimination,
poverty, loss, neglect and abandonment.The purpose of the CoC is to address HIV as a chronic
disease and develop systems that provide humane, effective, high-quality comprehensive
and continuous care to PLHIV and their families.
Figure 4: Continuum of Care framework
THE CONTINUUM OF CARE
Primary Health Care
\
z
/
Secondary
Health Care
| • Health posts ]
I - Mobile services
Z^lDistrittX
/
\
hospitals
V
• HIV clinics
• Social/legal
]
j
Community Care
• Volunteers
• Hospice
The entry point
'
Specialists
and specialised
v
care facilities
\
PLHIV
/
'
PLH V
Home-based
Tertiary Health
Care
support
Care
v A tip-ed
Piaafl/DaiiielTsfisciol.'i
I liv.'AI Sexually Tiansinliied (XmwvW <0
The CoC is a complete set of linked care, treatment and support services provided at all levels from health facility
(hospital/health centre) to community and home by government, NGOs, CBOs, FBOs, PLHIV and family members.
Source: Adapted from: Nardin JR Chela C and van Praag h. Planning and irnplenieniing HIV/AIDS care programmes: a step by step
approach. New Delhi, WHO Regional Office for South Fast Asia, 2007.
CoC planners accomplish this by linking PLHIV to existing services while also*building
on those services to create enhanced care that is centrally available. CoC managers also
advocate for and create other needed services that are not available or accessible to PLHIV.
As such, the CoC has two defining characteristics:
7
sc a 1.1 xi; i; I- i in-: c ox 11 m i:m or < are ior p koi* i i- i i v i \ g with i i i v i
1.
The Continuum of Care is a network that links, coordinates and consolidates care,
treatment, and support services for PLHIV. These services are provided in their
homes, in the communities where they live, and in the health facilities that serve
them. The network is usually supported by a local CoC Coordination Committee
(CoC-CC) that is responsible for facilitating referral linkages and planning.
2.
The Continuum of Care is also the group of services themselves that together
provide comprehensive support to PLHIV and their families. While these services
are generally provided by a number of different organizations, the system that links
and coordinates them is planned and managed by the CoC-CC whose members
include government officials, service providers, non-governmental organization
(NGO) representatives, PLHIV, and other stakeholders.
Both of these features of the CoC are illustrated in Figure 4. The circles represent the different
services—clustered by location of delivery—that are included in many CoCs. The arrows
represent the referral network that binds the services together in the CoC.
Most of the CoCs that are profiled in this Toolkit were initially developed to provide care,
treatment or support services to PLHIV. Once these services were established, the CoCs
began to incorporate prevention activities over time as their scope expanded to became
more comprehensive. This order of implementation does not mean that the prevention
component of the CoC has a lower priority than services for care, treatment and support
rather, it is a historically accurate description of how the CoC concept evolved in practice in
the Asia-Pacific Region.
1.1
Beginning of the Continuum of Care: birth of a global strategy
The CoC was developed as a response to the many needs that PLHIV and their families have over
the course of their lives and the difficulties they face in accessing those services. The roots of
the CoC approach were developed during groundbreaking work in an urban setting in Australia
in the mid-1980s.13 WHO built on these efforts through the Global Programme on AIDS in the
early 1990s and led the development of a global CoC strategy14—an approach that was later
adopted by UNAIDS and most national HIV/AIDS control programmes in Africa and Asia.15'16
The CoC was established in many countries before ART was available, with community groups
playing major roles in establishing most local CoCs. The existing CoC structure created a solid
foundation for the eventual introduction of ART. In places where the CoC existed prior to the
introduction of ART, CoC programme managers were able to build ART into a system of linked,
accessible services that in turn supported and reinforced the effectiveness of ART.
"ART is a crucial part of the CoC, but it is only a part. ART is like the roof of a
h0ljSe—a heavy one. If the foundation of the house (for example, management
of 01s, laboratory services, standard precautions, community and CHBC services)
. is not strong, ART can make the house collapse. ART is most effective when it is
supported by a strong CoC framework. Without a strong CoC, ART can not be
sustained."
Dr Chawalit Natpratan, former Director CDC 10, Chiang Mai, Thailand
8
A 1.1
1.2
VI’ Illi
’>\ I I
i \i !> I < ARE lOR I’EO I’ I F. 1,1
. W I I II II 1 V i
Continuum of Care in Asia and the Pacific: then and now
The number of HIV-infected persons began to increase notably in the Asia-Pacific Region
during the early 1990s. Amid unrelenting stigma and discrimination, local communities
begin to respond to the needs of PLHIV for care, treatment and support by establishing care
centres and community and home-based care (CHBC) services.
During these initial stages of the response—when only a few hospitals were willing and
able to provide care for PLHIV, and ART was unavailable—CHBC teams and day care
centers (DCCs) performed the hard work of providing services and making linkages with
other services that their clients needed. These services included emotional support and
counselling, self-care empowerment, cotrimoxazole prophylaxis, tuberculosis (TB) screening
and treatment, access to care and treatment of opportunistic infections (01), assistance with
transport to referral sites, food and income support, end-of-life care and future planning,
and support for children and other family members.
In northern Thailand, PLHIV organized groups and began to establish partnerships
with health workers in hospitals to provide care for their peers in the early
1990s—an effort that eventually led to the establishment of day care centres
(DCCs) such as in Chun district, Phayao. In Cambodia, CHBC services were initiated
by PLHIV and NGOs in the mid-1990s and were incorporated into the national HIV/
AIDS programme in 1998. The CHBC approach served as the foundation for other
essential care services for PLHIV in both Thailand and Cambodia.
The importance of the DCC to the CoC was its key role as a hub of service planning and
provision. These dynamic sites provided PLHIV groups with a place to meet and organize,
served as a base of operation for CHBC teams, and were an important social and community
setting for PLHIV and their families. DCCs and CHBC services were linked to TB services in the
early days of the response in the region. Cotrimoxazole prevention therapy was also made
available to PLHIV through the DCCs long before it was widely available in other countries
in the region.
Very importantly, the CoC has created
an environment of mutual trust and
friendship between PLHIV, health-care
workers and other providers. PLHIV and
others working in the comprehensive
care sites work side-by-side as partners
to provide respectful, quality and loving
services to people in need. This, more
than anything else, has made the CoC
an approach to care provision that
adds quality, value, ownership, and
effectiveness to services.
Client - centred care: The heart of the CoC
Other services were added to CoCs in the region over time as they became more affordable
or were demonstrated to be effective. ART was first offered in Thailand during the early 1990s
9
sc: a i. ini. i;i’ riiE ioni'iavim c»i < a hi- tor pi-op i.e i.im
U I III II I \ |
"The continuum of care that we have developed in Pingxiang is the most advanced
in Guangxi, and perhaps in all of China. We have built on the foundation of the
Four Frees One Care policy to create something new."
Dr Zhao Shao Jiz Director, Pingxiang Bureau of Health
while PMTCT was included in the CoC in 1997J7J8,19,20 coCs that have been established more
recently, such as those in Guangxi province in China, have begun operation with most or all
essential services already in place: counselling and testing (CT), hospital-based HIV care, ART,
TB/HIV, PMTCT, and PLHIV support groups. Only CHBC services were added at a later date
in Guangxi due to concerns that home visits would identify PLHIV in the community and
increase already high levels of stigma and discrimination.
Thailand, in particular, pioneered the development of the CoC and catalyzed its adoption in
other countries within the region. In addition to Thailand, four other countries are profiled in
Section 3 of this Toolkit, including Cambodia, Viet Nam, China and Nepal.
Care, treatment, support, testing and prevention: an integrated response
1.3
A fully developed CoC brings together the five major components of a response to HIV:
1.
2.
3.
4.
5.
Care
Treatment
Support
Testing and counseling
Prevention
Figure 5: Continuum of services for people at risk of infection or people living with HIV
Palliative__________
Home-based care
ART
PMTCT
■
01s and related illnesses
diagnosis, treatment and preventative therapies
■
Psychosocial and spiritual support
individual and family...
care providers...
bereavement...
orphans
VCT
Prevention
STI management, behavioral change, communication, education, universal precautions...
Uninfected
people
Exposed
people
People living
with HIV
People living
with AIDS
Terminally ill
and beyond
Source: van Praag E. Galen /raining: Connnuum ofHiVCare. international Association for Physicians in AIDS Care (IAPAC), 2004.
10
SC A i I Nt; lip Tllk <.OXTIM rv
I < \ =: i
Hitt I’ I <> l‘i I- I 1 V I N (. W I III II1 V
All of these components are necessary to provide a full set of services that people at risk
of infection or people living with HIV may need over time (see Figure 5). A brief summary
of each element follows below. The primary services that pertain to these components are
listed in Section 2.4 and described further in Annex 1.
1.
Care: PLHIV need to maintain good health until they are ready to start ART and thus
require effective preventive services. Once they begin ART, they continue to require
clinical care services to stay healthy and minimize side effects. These prevention and
care services may include:
Prophylaxis with cotrimoxazole
Treatment for opportunistic infections
Prevention, early detection and treatment of tuberculosis
Nutritional therapy
Palliative care
Immunizations for children living with HIV
The care that PLHIV need should be offered at different sites that include health
institutions, community-based care, and home-based care. The CoC plays a vital role
by linking these care services through referral networks—both across different sites
(e.g. health facilities, communities, homes) at different levels, as well as within sites (e.g.
services within the health facilities that may include various outpatient departments,
MCH services, TB/HIV, paediatric and adult wards and the HIV clinical service site).
2.
Treatment: Antiretroviral therapy (ART) is the single most effective intervention for
prolonging the lives and improving the quality of life of PLHIV. PLHIV today have
legitimate hope for long-term survival due to lower prices and improved availability of
ARV drugs. Despite this improved situation, only a small minority of those PLHIV who
require ART actually receive treatment. Due to a variety of factors that include stigma
and discrimination and poverty, most PLHIV have not been tested and are thus unaware
of their status—even though they may be eligible for ART if they need'it. One of the best
strategies to increase treatment coverage is therefore simply to increase the number of
HIV-positive individuals who know their status.
3.
Support: PLHIV have many non-medical needs that can affect their adherence to
therapy, well-being and ultimately their survival. The CoC ensures that clients are
referred to or linked with the different providers and services they require in a timely
manner. Support services offered through the CoC may include:
Psychosocial support
Income generation activities
Assistance finding employment
Housing services and provision
Child care
Legal support
Planning for the future
*
11
SCALING UP TIIH C(» N I'I N V U M (>l
<
III! HIV
Support services are provided by a variety of organizations that include government
ministries that are concerned with social welfare and other related sectors, NGOs, PLHIV
groups, religious institutions and community groups.
4.
HIV counselling and testing: Within the context of the CoC, HIV counselling and testing
(CT) services seek to prevent new infections as well as to link PLHIV with care, treatment
and support services. HIV testing services include traditional CT or voluntary counselling
and testing (VCT) as well as provider-initiated testing and counselling (PITC). CT services
may be integrated into existing services such as sexually transmitted infection (STI) orTB
clinics. Alternatively, they may be located in free-standing clinics or community-based
organizations with strong referral links to HIV care and treatment services. CT services are
usually the point of first contact between the client and the CoC and thus often create
a positive or negative impression of the CoC services in the mind of the client. For this
reason it is important to build client confidence by providing high-quality, confidential
counselling and fast, reliable same-day test results. Comprehensive pre- and post-test
counselling provide important opportunities for clients to learn about and be referred
to other services within the CoC.
5.
Prevention:The CoC holds the potential to be an effective means of expanding targeted,
focused prevention activities. By building trusting relationships with PLHIV clients, the
CoC provides a structure for reaching out to at-risk populations—including HIV-positive
clients—with sensitive and compassionate prevention services.The strong referral links
that the CoC builds between care and prevention services in turn strengthen support
for clients to practice positive prevention. CoC planners and managers in the AsiaPacific Region have generally not emphasized primary prevention activities during the
initial stages of CoC development. See Section 7 for more information on integrating
prevention activities into the CoC.
1.4
Continuum of Care service delivery model: horizontal and vertical links
Service delivery within the CoC is based on a well-coordinated physical and administrative
infrastructure that includes systems for coordination and referrals both within and between
the different levels of the health system as portrayed in the figure below.
Referrals also are made laterally, at each health service level, between health services (e.g.
HIV care, TB, ANC, STI, and HIV prevention services) and other psychosocial support and
spiritual care services (e.g. Departments of Social Welfare and Women's Affairs, NGOs).
Details regarding how to establish this model of service delivery can be found in Section 4.
12
SC A I I X C I I' I II h < ONI I N c UM ()>- c A U I- i OB I* J-< ■ “ I I
1 I x I\
WITH II IV |
Figure 6: Continuum of care service delivery framework with
district / intermediate-level focus
PROyiNCiWERTIARY
)
• Management of complicated cases
• Specialized services & support
ir
J
DISTRICT/INTERMEDIA1
*___________________
REFERRAL
Vertically
&
Horizontally
I • Comprehensive services including ART & coordination
I • PLHIV group formation & peer support
■
Wil
EALTH CENTRE & HOME-COMMUNF
_________________
• ART adherence support
• Basic palliative care
Source: HIV/AIDS care and treatment: guide for implementation. Manila, WHO Regional Office for the Western Pacific, 2004.
2.
Guiding principles for the Continuum of Care
The CoC framework is based on a set of core principles. These principles may differ somewhat
by country or site and can range from an explicitly documented set of ideals to an implicitly
understood set of guiding values.
CoC Core Principles
■
Needs-based and client-focused: the CoC focuses on the expressed needs of PLHIV and
their families and maximizes client involvement in planning and implementing the CoC.
Rights-based orientation: the CoC is based on respect for human and patient rights (such
as confidentiality and equal access to high-quality care) and openly addresses stigma and
discrimination, gender equity and other barriers to access.
Meaningful involvement of PLHIV and other stakeholders: full participation from PLHIV,
the communities that they live in, as well as the governmental agencies and NGOs/CBOs
that serve them, is essential to the success of the CoC.
Links a diverse set of services across different service delivery sites: the CoC includes
preventive, treatment, care and support services at different levels (i.e. district and
provincial-level health and social services, community-based organizations, home) with
appropriate interlinking referral mechanisms.
Locally defined design strategy: there is no right or wrong way to implement tllb CoC
in a given location. The local context will strongly influence the approach to designing,
planning and implementing a CoC.
SCALING I l‘ THE (ON IlNUUM OF CAKE FOK P F < > i1 1.1
I I \ iXi, H I I II II I V i
The National Centre for HIV/AIDS, Dermatology and STDs (NCHADS) in Cambodia has
developed a set of principles to guide the design and implementation of CoCs, which can
be found on the CD-ROM that accompanies this document.
3.
Why establish a Continuum of Care?
While there are many reasons why the continuum of care is a valuable approach, four that
stand out are the following:
1.
2.
3.
4.
Quality of life: enhancing the health and well-being of PLHIV
Better adherence to ART
Increased acceptance: reducing stigma and discrimination towards PLHIV
Reduced costs of service delivery coupled with improved outcomes
Quality of life: enhancing the health and well-being of PLHIV
3.1
The fundamental aim of the CoC is to improve the quality of life of PLHIV and their families.
Evaluations of the CoC have shown convincing results in this regard. People with HIV
participating in CoC services have reported:
■
9
a
I
■
i
Decreases in stigma and discrimination21
Increases in emotional and social well-being22
High levels of adherence to antiretroviral therapy23
Lower levels of loss to follow-up in CoC sites than those achieved in other stand
alone, non-comprehensive service systems24
Better adherence to ART
3.2
Among PLHIV who are eligible for ART, adhering to their ART regimen is the single
most effective action that they can take to improve or maintain their health. Multiple
studies have shown that the provision of
increased psychosocial support to PLHIV
who are taking ART is directly associated
with improved adherence to ART and better
health outcomes.25-26
The CoC supports PLHIV to adhere to their
ART through two means: (i) a comprehensive,
coordinated set of care and support services
for PLHIV who are taking ART, and (ii) the
establishment of a referral network between
PLHIV counsels peer in ART adherence
the services that helps to ensure that PLHIV
receive the support they need to maintain adherence to their therapy. CoC programmes can
support adherence to treatment through the following strategies:
a
a
Training clinic staff to provide adherence counselling and information for PLHIV.
Training and supporting PLHIV and members of affected communities as
adherence counsellors—both in clinics and in communities—so that they can
assist individuals and communities to understand ART and how to maximize the
benefits of treatment.
14
s(. A I 1 NG U I' III!
GON i I M UM O I < A R K f O R l» KO I* I I
\S ! I II HIX
Producing and disseminating easy-to-understand written information on adherence.
Medical clinics that serve PLHIV, CHBC services, and PLHIV support groups all provide
coordinated messages and information
on the importance of adherence, how to
use tools that promote adherence (e.g. pill
boxes, reminder calendars), and how to
manage sideeffects. By ensuring high levels
of adherence, the CoC helps to prevent
the emergence of HIV drug resistance.
The CoC referral system also improves the
consistency and compatibility of care that
PLHIV receive across services.
3.3
In two sites in Viet Nam where
comprehensive care is provided under a
CoC approach, 98% of clients reported
adherence to ARV therapy of greater than
95% over a six-month period. Adherence
to ART needs to be greater than 95% in
order for treatment to be effective.
Increased acceptance: reducing stigma and discrimination towards PLHIV
People living with HIV in many parts of the region face high levels of stigma and discrimination.
Lack of knowledge regarding how HIV is transmitted contributes to discrimination among
members of the general public and health workers alike. The link that many people make
between HIV and "social evils"such as injecting drugs or participating in commercial sex may
intensify the stigma and discrimination that is perceived and experienced by PLHIV.
"I'm not scared to tell people that I'm HIV-positive. I'm positive about myself and
my life."
HIV-positive client, Plngxiang City, Guangxi Province, China
Stigma and discrimination against PLHIV makes the impact of HIV worse. Fear of the
consequences of testing HIV-positive can be so overwhelming that people who are at risk
of being infected may avoid seeking HIV testing and counselling. Less than 10% of people in
the Asia-Pacific region who are HIV-positive know their status.27 Reluctance to being tested
for HIV among those who are positive results in late diagnosis of HIV and delayed initiation
of care and treatment, which can in turn lead to further transmission of HIV.
The role of the CoC in reducing
discrimination
The CoC is founded on principles of
inclusion and participation. In practice,
this translates into meaningful
involvement of PLHIV and their
families in shaping and implementing
the services that are part of the CoC.
PLHIV are more likely to use services
that meet their needs and that they
have been involved in designing and
■
w
F ll
providing.
Participants in the Mondol Mith Chouy Mith PLHIV meeting
in Cambodia
15
SCALING U P I II E CON I I N U I.' M Oh CARE FOR I’EOI'l.F. I I \ I \ l, Will! !l I \
The bonds that PLHIV and health providers form lead to improved services and reduced stigma
and discrimination towards PLHIV in health facilities, within the community, and at home.
Equally important, PLHIV become service providers under the CoC in comprehensive care sites
(as counsellors, support staff and administrators), as support group leaders, and as providers of
home-based care.The partnership that is formed between PLHIV, health care and other providers
transforms initial barriers and fears into feelings of genuine respect and cooperation.
"Before, when I was thin, the children in my village used to call me 'AIDS-man'. But
now that I have gained weight and look normal, they don't tease me anymore."
PLHIV client, Moung Russey District, Battambang Province, Cambodia
3.4
Reduced costs of service delivery coupled with improved outcomes
Health officials who organize services that provide care and support to PLHIV want to improve
their clients' health as much as possible with the limited budget they have—that is, they want
the health services they oversee to be cost-effective. Many of the individual services that are
provided through the CoC (e.g. CT, ART, 01 management) clearly lead to better health for PLHIV.
Health planners want to know if the CoC framework improves PLHIV's health more than other
service delivery models—models that do not emphasize coordination and linkages as much as
the CoC—or if all models achieve similar results.
The cost-effectiveness of the CoC compared to other service delivery models has not been
scientifically tested. It is therefore impossible to state with certainty that the CoC is more costeffective than other models. However, the CoC reduces some costs and increases some benefits
when compared to service delivery models that place less emphasis on coordination.
Three ways that the COC may help reduce costs and improve client
outcomes
1.
The CoC framework leads to better results for clients than organizing services
separately. The comprehensive referral systems that make up CoC framework lead
to higher levels pf early testing and diagnosis, which in turn, lead to early initiation of
ART. Early diagnosis of HIV and early initiation of ART have been shown to improve
clients'health.
2.
The CoC sets common goals among services that reduce the cost of coordination. The
integration of services under the CoC framework leads to a "team approach" where
all services share a common goal—the well-being of PLHIV clients. This shared goal
creates incentives to coordinate in a structured, efficient manner, which in turn leads
to reduced costs of coordination between services.
3.
The CoC results in economies of scale. Economies of scale are realized under the CoC
when separate services share fixed costs and avoid duplication and inefficiency. For
example, the VCT and ART services can share laboratory facilities, computers, and a
common building.
While these three examples do not definitively prove that the CoC is more cost-effective
than other service delivery models, they do represent plausible arguments that services
delivered through the CoC do result in better client health and/or lower costs than
services delivered through other models.
16
I H I- (.ONI I X i I M ()1 CARE EOR I'EO 1’1 F I I \ I N<.
1 ! II 111'
The core services of the Continuum of Care
4.
A CoC consists of a network of linked services provided in a geographically defined area. A
set of key services is often provided through a comprehensive care site (CCS)—a central
location, or one-stop facility, where a variety of services are provided. The CCS also serves
as a place where PLHIV can meet, relax and participate in self-care, service planning and
recreational activities. The CCS is linked to tertiary and CHBC services as well as other
services not provided at the CCS. The box below contains a list of services that are offered
in most CoCs.
Box 1: The Continuum of Care - a locally defined range of services
Continuum of care networks generally include most or all of the following
services:
•
•
•
•
•
•
•
•
•
•
•
•
•
HIV counselling and testing
Opportunistic infections: prevention and treatment
Tuberculosis detection, prevention and treatment
Sexually transmitted infections (STI): diagnosis and treatment
Palliative care: treatment of pain and other symptoms, psychosocial and
spiritual support and end-of-life care
Antiretroviral therapy and adherence: counselling and support
Prevention services for those most at risk including IDUs, sex workers,
MSM, prisoners, migrants and youth
HIV prevention and reproductive health services for PLHIV and discordant
couples
PMTCT and health services for HIV-positive mothers and infants
PLHIV support groups
Nutritional and daily living support
Psychosocial support: support groups and counselling
Orphans and vulnerable children: care, support and protection
Additional services that are provided at some CoC sites include social welfare
for adults, children and families; legal aid and income generation; targeted HIV
prevention services; drug dependency counselling and treatment; and other
services as determined through a local assessment of needs and resources.
A capsule description of these services can be found in the glossary in Annex 1.
13
van Praag EV. Personal communication, 2007.
14
Osborne CM, Praag EV, Jackson H. Models of care for patients with HIV/AIDS. AIDS, 1997,11 (suppl. B):S135-141.
15
AIDS epidemic update: December 2005. Geneva, UNAIDS, WHO, 2005.
16
Narain JP, Chela C, van Praag EV. Planning and Implementing HIV/AIDS Care Programmes: a step by step approach.
New Delhi, WHO Regional Office foi South-East Asia, 2007.
17
Thanprasertsuk S, Lertpiriyasuwat C, Chasornbat S. Developing a national antiretroviral programme forpeople
with HIV/AIDS: The experience of Thailand. AIDS in Asia. The challenge ahead. Editor Narain J. New Delhi, Sage
Publications India PcT Ltd. 2004. Page 312-322.
18
Kunanusont C, Phoolcharoen W, Bodaramik Y. Evolution of Medical Services for HIV/AIDS in Thailand. J.Med.
Assoc.Thai, May 1999, Vo 82 No 5. P. 425 -433.
17
s ( \ i i X (, ( l> I II h C O N T I N U i; M O b C A K E H» R I' Eo I* 1.1
1.1 V | X G VV I I II II I \
■■■■■■■■■■^————
Further readmi
IH
SMi
WIM
HIV/AIDS care and treatment: guide for implem
Office for the Western Pacific, 2004.
,
Narain JP, Chela C, van Praag EV. Planning and implementing HIV/AIDS care
programmes: a step by step approach. New Delhi, WHO Regional Office for South-
2.
East Asia, 2007.
3.
Scaling up HIV prevention, care and treatment, report of a regional meeting. New
Delhi, WHO Regional Office for South-East Asia, 2006.
4.
HIV/AIDS care at the Institutional, community and home level: report of a WHO
regional workshop. Bangkok. April 2003. New Delhi, WHO Regional Office for
South-East Asia, 2007.
5.
Lamptey PR, Zeitz P, Larivee C. Strategies for an expanded and comprehensive
response (ECR) to a national HIV/AIDS epidemic: a handbook for designing and
implementing HIV/AfDS programs. Arlington, VA, FHI, 2003.
6.
Lamptey PR, Gayle HD (eds). HIV/AIDS Prevention and Care in Resource-Constrained
.
.
_
> . „
.
n__ __
A
\/A
M
Chaisombat S et al. The national access to antiretroviral program for PHA (NAPHA) in Thailand. The South-East
Asian Journal of Tropical Medicine and Public Health. 2006. 37(4):703-715.
20 Expanding access to antiretroviral treatment in Thailand: report of an external evaluation. New Delhi, Ministry of
19
21
Public Health Thailand, WHO Regional Office for South-East Asia, 2007.
Prombuth T et al. Making a difference: a longitudinal study assessing ‘‘Quality of Life for ART patients in Battambang
Hospital. Cambodia. Phnom Penh, FHI/Asia Pacific Regional Office, FHI/Cambodia, 2006.
22
Duong C et al. Health-related quality of life ofpatients on ARV therapy in Ho Chi Minh City. Viet Nam^ Ho ChiMinh
City, FHI/Viet Nam. FHVThailand, University Training Centre for Health Professionals/ Ho Chi Minh City, USAID/
23
Viet Nam, 2006.
Tran H et al. Preliminary outcomes and impacts of HIV care and treatment interventions in Viet Nam. Ho Chi Minh
City, FHI/Viet Nam, FHI/Thailand, University Training Centre for Health Professionals/ Ho Chi Minh City, USAID/
24
Viet Nam, 2006.
Bristol-Myers Squibb, FHI. Enhanced Evaluation of HIV/AIDS Community-Based Care and Treatment Programs in Five
Countries: Botswana, Lesotho, Namibia. South Africa and Swaziland. Preliminary Results (in press). Np, 2007.
25
18
26
Ibid.
Apondi R et al. Social outcomes in a prospective cohort in Uganda. Journal of Acquired Immune Deficiency
27
Syndromes, 2007,44:71 -76.
hiv/AIDS in the South-East Asia region: March 200/. Delhi, WHO South-East Asia Regional Office, 2007.
There is a rich regional history of different approaches to provide, coordinate and link
services for PLHIV and their families. The examples of the CoC in Cambodia, China, Nepal,
Thailand and Viet Nam that are presented below are characterized by PLHIV, health workers
and others coming together to develop an effective, compassionate system of care.
Cambodia: effective leadership and coordination from
national government
1.
In 2003, the Cambodian National Centre for HIV/AIDS, Dermatology and STDs (NCHADS)
led a participatory process to develop a national CoC operational framework. Partner
organizations have since scaled up the CoC across the country and rapidly increased PLHIV
access to care and treatment services.
NCHADS uses the CoC to fulfill its strategic vision for care and support for PLHIV
NCHADS originally piloted and then expanded a community and home-based care (CHBC)
programmeacrossCambodia in the late 1990s. NCHADS recognized thatdemand for hospital
based care and treatment for PLHIV would increase but that hospital care was not effectively
linked with CHBC services. The Centre made a strategic decision to adopt and rollout the
CoC approach to provide and coordinate care for PLHIV. NCHADS began by developing a
detailed operational framework for the CoC and then piloted the implementation of the
CoC approach in collaboration with NGO partners, UN agencies and local health authorities
in Moung Russey Operational District and other sites.
The CoC in Cambodia: coordination, planning and partnership
NCHADS provides guidance and funding for the CoC but gives localities the responsibility
of designing and implementing the CoC. This approach encourages provinces to work
with civil society partners to create a
—
continuum of care that best meets local
needs. The most important action that
fl
NCHADS took to enable localities to
implementtheCoCwastobothorderthe
appointment of and fund the position of
CoC Coordinator in each province. Key
aspects of the CoC model in Cambodia
include the following:
r
f•
--- -
■
Creating a centre of care at
the district hospital: the CoC is
centred around an outpatient
clinic (OPC) for PLHIV that is
R"
i
J
-WSh*-'
A
.
A centre of care - integrated HIV care services in
Battambang, Cambodia
19
SCAi i\(. t;p Tin i.itx 11 xv. m oi care i or peoi-i.e i i vim; win hiv
integrated within the district hospital. The OPC is linked with CHBC services and a
large support group (known as Mondol With Chouy With, or MMM) of PLHIV and their
families. The OPC is comprehensively linked with other health services that include
■
VCT, PMTCTTB/HIV and inpatient care.
Emphasizing involvement of PLHIV in the CoC: PLHIV are involved at all levels of
the CoC. They serve as members of district and national-level CoC committees
and ART selection committees, assume roles in service delivery that include peer
support worker positions at outpatient clinics for PLHIV, and are key members of
CHBC teams. The Cambodian Network of People Living with HIV (CPN+) plays an
■
important role in promoting the involvement of PLHIV in the CoC.
Promoting peer and family support for PLHIV—the MIVIM: the Mondol Mith Chouy
Mith (MMM) is based at the hospital and can be found at almost every CoC site.The
MMM serves as a venue for PLHIV support group activities. Even more importantly,
the monthly MMM meetings build trust and partnership between health-care
■
workers, local authorities and PLHIV.
Building capacity: NCHADS has invested in the development of a centrally trained
cadre of professionals to meet national training needs to support the rollout of the
CoC.
Moving forward with the CoC: how to make a good thing better?
Through its use of the CoC, Cambodia has successfully provided ART to between 56 and
100% of PLHIV in need of treatment. Equity in coverage has been attained, as 49% of ART
recipients are women and 9% are children.28 The future of the CoC approach in Cambodia
appears bright given achievements to date and stakeholder commitment. Hard work will be
required, however, if the success of the CoC is to be sustained over time. Future challenges
may include maintaining high staff motivation and logistical issues related to the delivery of
necessary drugs and supplies as coverage increases. Based on past performance, Cambodia
will meet the test.
2.
China: developing local solutions within a national policy
framework
Energetic, innovative, forward-thinking health experts from the government and
non-governmental sectors in China are using the CoC approach to implement national
policies that define care, treatment and support that should be provided to PLHIV. Two
initiatives—the Pingxiang CoC and the China Australia Xinjiang HIV/AIDS Prevention and
Care Project (XJHAPAC29)—are described below to illustrate progress that has been made.
Each project follows a multi-sectoral approach and CoC principles to achieve program
objectives.
Operationalizing the China CARES programme: turning policy into services
The Government of China launched the China Comprehensive AIDS Response (China CARES)
programme in 2004 as an integrated response to the HIV epidemic. China CARES seeks to
increase access to comprehensive care and treatment services as outlined in the Four Frees
and One Care policy. This policy guarantees free counselling and testing services, free ARV
drugs to people in rural areas or eligible urban clients with financial difficulties, free ARV
20
x : ! x ( I V f > I < A R h FO« I’EOP ; I
i I\ ■
, WITH II IV I
drugs to prevent mother-to-child transmission, free schooling for children orphaned by
AIDS, and economic assistance to households with PLHIV. Challenges to the implementation
of China CARES include: 1) inadequate resources to provide all required services, 2) the lack
of an effective coordination mechanism between services, and 3) financial barriers that
prevent clients from confirming their HIV-positive status.
CoC pilot programs: models designed to meet local needs and implement China
CARES
Two localities in China, Pingxiang and Xinjiang, applied the CoC approach to develop a
system that could fully implement the China CARES program. One or both of these projects
include the following key features:
M
n
H
■
Establishing a genuine partnership relationship between the hospital and the
CDC: CoC planners in Pingxiang set coordination as their top priority. The two key
branches of health service provision in Pingxiang—the Pingxiang People's Hospital
and the Centre for Diseases Control and Prevention—have worked together since
the beginning stages of the CoC to provide a full range of services for PLHIV.
Strengthening and linking facility-based services for PLHIV: CoC planners in both
sites built on support provided through the China CARES programme to establish
hospital-based comprehensive care sites and strengthen inpatient care. Each site
developed a referral system to create links between these and other services that
include VCT, PMTCT, and methadone maintenance therapy.
Establishing community and home-based care services: the XJHAPAC programme
has developed extensive CHBC services. PLHIV are linked to a community care
provider who supports adherence to treatment, advocates with the Department
of Civil Affairs for a basic living allowance, and provides psychological and physical
care for PLHIV in their own homes. Trained community providers (who include
family members and PLHIV) work with clients to promote interventions for health
and social problems, prophylactic treatment, appropriate referrals and treatment
adherence.
Overcoming stigma and discrimination: CoC planners strengthened health workers'
acceptance of PLHIV through strategies that include: orienting health leaders
regarding their role in reducing stigma; arranging for international experts to
model open behaviour and attitudes towards PLHIV (including touching and
hugging); developing health-care financing mechanisms for PLHIV so that they are
not perceived to be a burden on the health system; and educating all employees
in organizations that support the CoC regarding how HIV is transmitted and how
B
B
to prevent accidental exposure.
Partnerships with other sectors: strong partnerships between police, Islamic
religious leaders and public health programmes promote harm reduction and care
as integral parts of the response. This in turn reinforces the social mobilization
strategy of the CoC.
A growing role for PLHIV: PLHIV work as caregivers in the hospital, CHBC providers,
peer educators in needle and syringe programmes, and inpatient care providers,
thereby earning a small income while building self-esteem and ownership in their
own care.
21
< a k i- i-<> r i* i:<>i* 1.1- iivixt, n i l ii ii iv |
SC A I. INC UP I II I-
Assessing where we are and where we need to go
The experiences in Pingxiang and Xinjiang show that Chinese government and NGOs can
work together to develop a system of high-quality care, treatment and support for PLHIV that
builds on and enhances the impact of the Four Frees—and that PLHIV will use these services
if they are provided in an environment of understanding and acceptance. The challenge for
those working in HIV care and support in China is to use these lessons to expand coverage.
3.
Nepal: developing a CoC during civil conflict and
a migration-driven epidemic
The National Centre for AIDS and STD Control (NCASC) in Nepal has collaborated with its
partners to develop and expand care, treatment and prevention services for PLHIV over the
past decade. These gains have been achieved in the face of a prolonged insurgency, political
instability and severe geographical constraints.
Partners, clients and health workers join together to design and provide services
Groups that have contributed to the achievements in HIV care in Nepal include the
following:
■
M
People living with HIV advocate and serve their peers: PLHIV groups' advocacy and
support of programmes has contributed to the success of HIV care programmes
in Nepal. PLHIV work side-by-side with trained HIV health-care providers in health
facilities and in communities, serving as patient advocates and providing care
themselves.
Non-governmental organizations in Nepal fill gaps and strengthen government
programmes: NGOs provide care and support services that include 01 treatment
and cotrimoxazole prophylaxis, CHBC and counselling services, and referral of
eligible clients to government services for laboratory tests and ART services. NGOs
support the provision of ART by reinforcing adherence and providing palliative
care for ARV side effects.
Service provision framework in western Nepal: the Seti Hospital HIV Care and ART site
The Seti Zonal Hospital (SZH) ART site in Kailali District, Far Western Nepal, is a comprehensively
linked care, treatment and support programme implemented by the government health
services. The Zonal HIV Care and Treatment Committee meets on a quarterly basis to
coordinate and plan HIV-related activities. PLHIV support groups work with the government,
SZH hospital staff, NGOs and INGOs in the design and implementation of HIV care and
treatment programmes that target migrant workers and their families. The involvement
of PLHIV in the process has led to reduction in stigma and discrimination in affected
communities. The figure below describes the services that are offered through the SZH ART
site and how they are linked.
Challenges to overcome as the response in Nepal progresses
The previous lack of testing services in remote areas of Nepal presents a major challenge. Many
PLHIV do not know their status when services are introduced and thus do not use them. Mobile
counselling and testing services are taken to communities to address this problem.
22
\Ri
! (> H I’ I- O I’ IE 1.1 V I N(. \\ 1 I II II I V
Geographical constraints present major challenges to service provision. Clients in remote locations
find it difficult to make frequent visits to ART clinics due to geographical and economic constraints.
Partner organizations at some ART sites provide follow-up and counselling services in the
communities and have established hostels near to the ART sites where PLHIV can stay during the
first few weeks of their treatment.
Providing services to mobile populations: many
s
X. —
at-risk individuals in Nepal are highly mobile
and travel back and forth between Nepal and
India in search of work. FHI and its partners
in Nepal and India have established care,
treatment and prevention services in major
welcome
citiesin India—includingfree ART—specifically
iwIK
for Nepali migrants. Care and treatment
programmes have created links so they can
support referrals for migrants moving to and
from Nepal and India. Cross-border migration
W';
___
Set/ Zonal Hospital HIV Clinic, Nepal
Figure 7: Coordination framework in SZH ART site
...■
v
■'
_____
'J";
PLHA support
group with CHBC
VCT
STI
Adherence
counseling
Care and support
f People in
i Community
OtherSodall
Food support
Income generation
Transit home
Set! Zonal Hospital
I
Lab support
Inpatient services
TB services
1
<
ARTSite
IHSCIInk
ART Services
CD4 testing
VCT
STI
Adherence
counseling
Care and support
CHBC
->
CHBC
VCT
Adherence counseling
Services vary
Source: Family Health International / Nepal
23
' \ J. I N G UP TH E CO NT I N I l.M < > I
(AHI
I <> R I’ I- (> l‘ II. II V I NG W MH HI v
between places of employment and home no longer prevents Nepali migrants and their families
from receiving the services they need.
Thailand: PLHIV lead the response
4.
The PLHIV movement changed the face of HIV/AIDS care in Thailand. The central role of
PLHIV in the HIV response—with substantial support from NGOs such as the Thai Network
for People Living with HIV/AIDS (TNP+), MSF and AIDS ACCESS and in collaboration with
the Thai Ministry of Public Health (MoPH)—stands out as the leading regional example of
effective grassroots PLHIV activism. By the late 1990s, northern Thailand had become the
beacon for the CoC approach in both the country and the region.
PLHIV play leadership roles in designing a service framework and providing services
PLHIV across Asia in the late 1980s had a growing set of unmet needs for care, treatment
and support. PLHIV activists in northern Thailand took matters into their own hands. They
formed groups and advocated with local public health officials to address PLHIV needs. In
the 1990s this resulted in partnership in northern Thailand between TNP+ and local health
departments. Day care centres (DCCs) were established where PLHIV could receive health
care, emotional support and CHBC services—including the Chun DCC, a centre renowned for
offering compassionate care. Over the next decade, PLHIV, local NGOs, international NGOs
and the MoPH developed and implemented a groundbreaking service model to provide
care and support for PLHIV in a resource-poor setting—the Comprehensive Continuous Care
(CCC) centre—that today forms the core of CoC activities in Thailand.
The Comprehensive Continuous Care centre: the first CoC hub in Asia
CCCs were first established in local clinics
or district hospitals in northern Thailand
in the mid-1990s. CCCs not only provided
comprehensive, integrated services for PLHIV,
but the substantial involvement of PLHIV in
CCC operations, working alongside professional
medical teams, demonstrated the contribution
that PLHIV could make to their own care. Key
features of the 220 CCCs that provide services in
Partnerships between PLHIV and NGO leaders
■
■
■
■
Thailand today include the following:
Touching lives and forming bonds: the CCC is a place where PLHIV can meet, obtain
information and support, and form long-term relationships with health providers. The
CCC places an emphasis on gaining the trust of PLHIV and treating them with dignity.
PLHIV role in service provision: trained PLHIV provide services to their peers while
also receiving health services that include health education, medical and nursing
care including 01 management and ART.
A centre of support: CCCs also offer nutrition and self-care counselling, traditional
medicine, guidance in meditation and physical exercise, vocational and community
activities, psychological, social and financial support, and even daily meals.
Teams of trained PLHIV and health workers provide home-based care: trained
PLHIV conduct home visits for PLHIV to provide adherence support, social and
emotional support, counselling, and basic primary health care such as wound
2.4
Illi- ( O N'l I N i; I'M <>l
(- X K »
,■ • ( i I’ I I
I I X I X (, W IT II II I V
management. Health workers provide support for complex cases. PLHIV groups
meet regularly at the CCC where PLHIV and their family members are trained in
HIV prevention and care.
Gold-standard activism: building on achievements as PLHIV look to the future
The provision of universal coverage of ARVs in Thailand was a huge achievement.
Government action to enable local production of generic ARVs dramatically reduced the
costs of treatment. PLHIV organizations applied sustained pressure on the Thai government,
resulting in the inclusion of ARVs within the government 30-Bhat Health Care Scheme.
The MoPH used the findings of a recent evaluation of the Comprehensive Continuum of Care
Project30 to develop a new policy that encourages hospitals participating in the national
ART programme to establish CCC centres. The MoPH supports the medical component in
the 220 CCC centres that are currently operational while the Global Fund supports PLHIV
involvement and capacity building that is provided by the AIDS ACCESS Foundation, MSF
Belgium and TNP+. The unique and effective partnership of PLHIV groups, NGOs, and the
Thai government in the provision of services to PLHIV suggests that Thailand will continue
to serve as a shining example of the response to the epidemic in a low-resource setting.
5.
Viet Nam: national leadership of a coordinated response
The Ministry of Health (MoH) in Viet Nam responded early to the needs of PLHIV for care,
treatment and support, establishing the National AIDS Committee in 1990. Care was
G
provided to PLHIV through a system known
as the Management, Care and Counselling
Programme. As the epidemic in Viet Nam
advanced, the MoH reassessed its national
strategy. In 2005 based on the findings of
the assessment, the MoH established the
......
j
Viet Nam Administration of AIDS Control
J
r
(VAAC) and decided to pilot a new service
delivery strategy that offered accessible,
1
'W«
high-quality HIV care. The VAAC moved
quickly during the following year, teaming
with government departments, donors and
NGOs to develop and implement a national
Health care worker providing care to a client in
training programme on ART and adherence
Binh Thanh Clinic, Vietnam
counselling, standard operating procedures
for HIV clinical care and ART, and a uniform drug management system. By early 2007,
approximately 200 comprehensive care sites (CCSs) had been established, with 7,000 PLHIV
receiving ART—more than a tenfold increase over 2004.
What are the key components of the CoC approach in Viet Nam?
The VAAC led the development of a national ART protocol as well as the Care and Treatment
Programme of Action during 2006-2007. These two efforts form the foundation for the
continuum of care approach that is being implemented in Viet Nam today. Key aspects of
that approach include the following:
25
S l A 11
G i; I’ T HE C O N I I X V U M O I C ARI- I (» R
a
■
W 1 I 11 f I I \
planning framework for CoC: the Programme of Action guides the CoC approach
for district-level planning, coordination, and service delivery. The Programme
outlines the role of District Care Coordinators and CCSs, both of which are generally
integrated into the district hospital structure.The Programme also emphasizes that
PLHIV should play a pivotal role in the development of services.
Basic CoC service delivery structure: two comprehensive care sites in Ho Chi Minh
City—District 8 and Binh Thanh district—demonstrate the basic CoC structure. Care,
treatment and support services for PLHIV are effectively linked to CHBC and social
support services. The CoC establishes the centre of care for PLHIV at the district-level
CCS, from where clients can be referred down to the commune-level and up to the
■
provincial/city-level health-care services as required.The CCS also provides a location
where local PLHIV support groups can meet and conduct monthly meetings.
The Management, Counselling and Care Programme: the MoH developed this
innovative programme to increase clients'access to services. The programme trains
staff in commune health centres (CHCs) to provide PLHIV with home and facility
based care for symptoms as well as cotrimoxazole prophylaxis and treatment
for common opportunistic infections. CHC staff are also trained in counselling
skills and encouraged to support the establishment of PLHIV support groups in
the communes. The programme establishes referral linkages between CHCs and
■
central hospitals that provide higher-level HIV services.
CCS models: two types ofCCSs have been established: (i) the CCS integrated within
the hospital, and (ii) the stand-alone CCS linked to the hospital. The CCS, together
with its links to the community care system, creates a continuum of care and a
platform for the widespread introduction of ART.
Next steps for Viet Nam: challenges for the future
The VAAC has set a target of establishing district-level CCSs in 70% of all 500 districts in Viet
Nam by 2010. Remaining challenges include securing a stable and adequate supply of ARVs
and other essential medicines for HIV care and providing district CoC sites with adequate
technical support. Given the strong foundation that the VAAC has created, Viet Nam will find
a way to overcome the challenges and meet its targets.
ill
Further reading
1.
NCHADS, FHI/Cambodia. Camb*
PLHIV, including ART in Moung Russey, Cambodia:
in a resource constrained setting. Phnom Penh, FHI
angxi CDC, FHI/China. Pingxianc
jugh governmental health servh
3.
AIDS Education Programme, FaWHO Representative Office in Viet Nam. H
history and case study of "Happy Heart C
IMg
lay cai
Mill
WHO, UNAIDS, UNICEF. Towards universal access: scaling up priority HIV/AIDS interventions in the health sector:
progress report. April 200/. Geneva, WHO, 2007.
29 Jointly funded through rhe GoC and the Australian Government (AusAID).
28
30
26
Kumphitak A et al. Involvement of people living with HIV/AIDS in treatment preparedness in Thailand: case study.
Geneva, WHO, 2004.
How t<
1.
: 'S'*
Get Started: gathering support and assessing
syste
2.
ih services:
md integratinc
d service
st
■
With nearly 20 years experience, much has been learned regarding how to establish
continuum of care networks. While each CoC is unique, there are common building blocks
that each CoC uses to build strong systems and services.
Section 4 provides planners and implementers of the CoC with guidance on how to put each of
the building blocks in place at the local CoC—that is, the site where CoC services are coordinated
and provided. Study these building blocks, ideas, and specific country examples throughout the
Toolkit to help decide which approach to CoC implementation best fits your local context.
The box below describes the different types of local CoCs that are found in the region. Section 5
provides information regarding national-level support for the continuum of care framework.
Box 2: What does "local CoC" mean?
Each site will develop the CoC based on their local context. "Local" can mean
different things in different places. Below are three types or levels of local CoCs
that are commonly found in Asia:
1.
District: CoC services are provided through one administrative district and revolve
around a comprehensive care site (CCS) that is generally based in the district
hospital. Links may exist between the provincial and district CoC programmes.
2.
District-cluster/operational district/city: a cluster of districts or a part (or all) of
a city is designated as a single CoC A full-service CCS is located in the district
with the greatest number of PLHIV. The remaining districts offer satellite
services and community and home-based care (CHBC) to ensure effective
follow-up support for clients.
3.
Provincial: all CoC services revolve around a CCS that is based in the provincial
hospital. Other district or district-cluster CoCs may exist within the province.
27
U i I II
S( Al.lNG UP THE CON I IM I M OF < ARE FOR PEOPLE I.IV I
The CD-RSM that accompanies this Toolkit contains a number of resource tools that have
been developed at different CoC sites. Planners and implementers are encouraged to review
these tools and use them "as is" or adapt them for their own use as appropriate.
CoC building blocks: a pathway to improving care services for PLHIV
With the rich experience of establishing CoC networks in Thailand, Cambodia, China,
Viet Nam and Nepal, six building blocks have emerged that are needed to establish and
maintain an effective CoC. Each block can be put in place with limited resources but all
require the commitment and passion of leaders, PLHIV and providers to work together to
make it happen.
The figure below illustrates the six building blocks of the CoC.
Figure 8: The six CoC building blocks
snild capacity
6
Create
acceptance
Involve PLH/V
4
^stabHsh services
3
Dewl0PtheKtw0rk
2
-
Getstarted
■
1
I
2.8
5
§
l
J
i
f
p
i v-
Building Block 1 activities:
c
•
Share the vision: creating awareness and commitment for the CoC
•
Know what's needed: assessing care needs
•
Make a plan: developing a CoC workplan
•
Form consensus: trainings and workshops for stakeholders
Building Block 1 activities concern mobilizing support for the CoC. Leaders in each CoC
should decide what actions are needed and in what order they should be done.
■1
BLOCK 1-A:
Share the vision - creating awareness and commitment for the CoC
The CoC may start from local government, PLHIV groups, and/or NGOs identifying a
need to develop more comprehensive and better-linked services for PLHIV. In some cases
international organizations may help identify the need for a CoC. The seeds of every CoC are
usually sown by a few key individuals who want to improve care for PLHIV and their loved
ones. Key activities that are necessary to build support for the CoC include the following:
1.
2.
3.
4.
Identifying a recognized leader to be the head of the CoC.
Holding meetings with stakeholders to discuss why a CoC is needed.
Taking stakeholders on study tours to see a CoC in action.
Inviting people who have developed CoCs in other areas to meet with stakeholders.
Identifying a leader of the CoC
The initial advocates of the CoC will need to gain agreement from one person to become the
local leader of the CoC. In Viet Nam this person is the head of the local hospital but in other
places it may be the director of the local health bureau.
Gaining stakeholder buy-in
The small core team of people who have the idea of creating a CoC in their area need to inspire
support for the CoC from local leaders and service providers. The broader the inclusion of
different people and organizations who can support the CoC, the more successful the CoC
will be. CoC planners should identify HIV-related issues that concern local leaders. These
issues may include a lack of coordination among HIV donors and programmes or concern
29
MiS(, II’ I II E CON I I N I I M Of < A K I- IDK !• I-. <> I’1.1-. 1.1 V I NG Will! ii n
over how Fo organize, provide or expand access to ARV therapy. Helping leaders see the CoC
as an effective response to these concerns is a good strategy for engaging local leadership
and obtaining their buy-in.
\
Building local commitment for the CoC around the region
The director of a district hospital in Viet Nam had a vision to start a CoC in his district
after hearing about CoCs that had been established in Ho Chi Minh City (HCMC).
He met with the Heads of the People's Committee and the Public Health Bureau
|
I
|
to obtain their support for the CoC and eventually took them on a study tour to
see the CoC in HCMC.The director then held a big meeting with stakeholders from
the district to discuss how the CoC could be established. This meeting became
|
|
I
1
the first of many CoC Coordination Committee meetings. With full stakeholder
support behind him, the director was able to rapidly establish a comprehensive
care site in his hospital and support the formation of PLHIV support groups and
CHBC teams. He also reached out to local faith-based organizations to donate food
to PLHIV in the hospital and in the community. An OVC support group led by the
|
Women's Union was also brought into the CoC.
I
The experiences in northern Thailand and Cambodia were different. In Chiang
Mai, Thailand, PLHIV groups struggling to take care of their peers in the
community initially met with local health officials to see what more could be done
to provide hospital-based care for PLHIV. Their collaboration eventually led to the
development of day care centres (DCCs)—there are now 222 DCCs throughout
the country—that served1 as the hubs of the first CoCs in Asia. Thus began a
long partnership to provide PLHIV with better care under the CoC. In Cambodia,
the national HIV programme felt the CoC approach was needed and brought in
i
key MoH officials, PLHIV and representatives of local and international NGOs to
|
j
|
develop the CoC.
Linking the establishment of the CoC to local concerns in Guangxi, China
In Guangxi, China, the establishment
of local CoCs was seen as a strategy to
operationalize the nationally mandated
China CARES programme. Although
local authorities were able to provide
free ARVs to eligible PLHIV through the
programme, significant barriers limited
access to this service. One major barrier
was the burden of expensive HIV
confirmation tests—the cost of which
is borne by the client—without which
few individuals are eligible to access
ART. The cost to PLHIV of treating
opportunistic infections was also very
high and a serious barrier to care and
30
*>
'■
CoC planning meeting in Guangxi, China
I II F GONTINLUM «> I
CAiU I OK I-HO I'IF II VINO WITH II I \
ultimately access to ART CDC authorities in Guangxi sought assistance to develop a CoC that
would reduce barriers to access. Strategies for improving access included the subsidization
of HIV confirmation tests and hospital fees for HIV care.
Seeinaisjbelieving; the role of study toyrs in mobjl^
There is no better way of building support for the CoC than by arranging for stakeholders to
see it in action. The fastest and most effective way to show stakeholders how the CoC works,
what it is, and how it impacts the lives of PLHIV and the community is through a study tour.
There are many ways to implement study tours. Ideally, local leaders can visit advanced
CoC sites in their own country. If this is not possible, leaders may be sent to neighbouring
countries. Another option is to bring leaders from advanced CoCs to the new site to share
their experiences and ideas for implementation. Whatever approach is used, study tours
provide opportunities for reciprocal learning. Such relationships can be maintained over
time and provide an opportunity for continued learning and support.
Chain reaction: impact of effective study tours
Teams from Cambodia, Viet Nam, Nepal, Papua New Guinea, Myanmar, India
and Bangladesh have all conducted study tours during the past decade to
observe the CoC day care centres in the north ofThailand. These visits contributed
I
I
to the development of the CoC in Cambodia and Ho Chi Minh City, Viet Nam.
Representatives from countries around the region have visited the CoC programme
|
in Moung Russey Operational District in Cambodia. Cambodia developed Moung
Russey to serve as a learning site for CoC planners both in Cambodia and
neighbouring countries where they can observe every component of the CoC
programme.
Following the establishment of CoC learning sites in both Viet Nam and Nepal,
I
study tours are organized internally so that participants can communicate with
I
peers in the same language and observe how services are provided at sites and
I
I
within contexts that are similar to their own.
Community and home-based palliative care services have been well developed in
Ho Chi Minh City, Viet Nam. NGOs in Nepal and Thailand have sent delegations to
I
|
Viet Nam to learn more about the specific role of CHBC in the CoC.
..
31
Action points: create awareness and commitment for the CoC
•
Identify a recognized leader to be the head of the CoC.
•
Hold meetings with stakeholders to discuss why a CoC is needed and gain their
support.
•
Take stakeholders on study tours to see a CoC in action.
•
Invite people who have developed CoCs in other areas to meet with
stakeholders.
'I '
BLOCK 1-B:
Know what's needed - assessing care needs
Once support is in place for the local CoC, the next step is usually a rapid needs assessment
to determine what the needs are for HIV care, treatment, support and prevention and
which needs have highest priority. Generally, some HIV services already exist—the needs
assessment seeks to learn how those services are used, how well-linked they are to other key
services, and what can be done to improve them. The needs assessment should also identify
gaps in service by asking PLHIV and families what they need. The best time to conduct the
needs assessment is often just after a study tour with local leaders when the steps of how to
implement a CoC are fresh in their minds. The box below outlines the basic components of
a CoC needs assessment.
Box 3: Components of a CoC needs assessment
The needs assessment should gather essential information on services, gaps and
perceived care needs. A basic assessment consists of the following:
1.
Interviews (individual and focus group) with PLHIV and families regarding
their needs
2.
A facility assessment of the local hospital and other HIV-related health services
and interviews with key health-care workers
3.
Interviews with NGO managers involved in HIV work including home-based
care, counselling and testing, and prevention
4.
Review of existing referral system and coordination mechanisms
5.
A review of HIV prevalence, projections and case reporting from the national
programme, provincial health department, and hospitals
See the CD-ROM that accompanies this Toolkit for an example of a needs
)
32
assessment report.
||\( UM Of- CAKE I'OK l» }-.(>»» I I- I.IVING WITH HIV |
The core CoC team is usually composed of a partnership of PLHIV, government, and civil
society representatives. This team develops and implements the needs assessment and
then reviews the information that it generates to identify major HIV care and prevention
service strengths, barriers and needs. The findings and recommendations that result from
this process are presented to stakeholders, followed by the identification of priority actions
that form the basis for the initial CoC workplan.
The needs assessment serves several additional purposes that include the following:
Creates an opportunity for PLHIV and family members to tell leaders and health
care workers what they need from a client perspective.
Develops teamwork and more trusting relationships by bringing together PLHIV,
community members, and health-care and NGO personnel in a common task while
promoting mutual understanding.
Action points: find out what's needed
rnndi
irf a
Hc Acwcmpnt
Conduct
a ranid
rapid hpp
needs
assessment tn
to dptnrr
determine what the needs and priorities
•
are for HIV care, treatment, support and prevention.
•
■
•*
1
Present the findings and recommendations to stakeholders.
■
—
:
•
'-I I
•
-
'
BLOCK 1-C
Make a plan: developing a CoC workplan
The findings and recommendations that emerge from the initial needs assessment form
the basis for developing a workplan for the local CoC. If there is already an HIV workplan
in place, then it can be adapted based on findings of the needs assessment. The workplan
can be prepared by CoC leaders and members of the core team that conducted the needs
assessment. The workplan can then be shared with the CoC Coordination Committee
(CoC-CC) to gather their input and ensure their support. Maximizing the involvement of this
committee leads to increased ownership and buy-in during its implementation.
Figure 9: Example of annual CoC workplan
Activity
Who
responsible
Time frame
QI
Q2
Q3
Q4
Cost
Total
Target/expected
output
Source: Family Health International
33
SCALING Ul’ Illi- (.ON IINVl.'M Ol C A K h I OR I’KOPI.E LIVING G I I K HO
A good werkplan specifies what needs to be done, when, and by whom. The CoC workplan
in the figure above was developed by the MoH in Cambodia for use by local CoCs to plan
annual activities, identify funding needs, and determine which activities were funded and
which require additional resources. CoC partners provide a concept paper with coverage
estimations and cost inputs using the table above. The CoC technical working group then
identifies CoC partners who will fill gaps in funding (fund/cost sharing) and service provision
(activities sharing). The workplan can be shared with donors and local organizations to
identify areas where they may provide support. The names of donors and organizations
that will support CoC activities can then be listed on the final workplan, which helps to hold
them accountable for commitments they have made. See the CD-ROM for an example of a
workplan template.
preliminary workplan
The
should
focus on essential first steps that
are achievable and lead to early,
measurable results. For example,
the initial focus of the workplan in
Moung Russey, Cambodia was to
set up the CoC comprehensive care
site (supported by staff training and
equipment procurement) and link
outpatient clinics and the VCT site with
services such as antenatal care and TB
care that were already offered within
CoC Coordination Committee meeting in Viet Nam
the hospital.
Action point: make a plan
•
Develop a workplan that specifies what needs to be done, when, and by whom.
BLOCK 1-D:
Form consensus - trainings and workshops for stakeholders
CoC planners should organize meetings, trainings and/or workshops to improve readiness
for implementing the CoC and to build broad consensus and support for the CoC. The
trainings or workshops that can improve support for the CoC include the following:
Introduction to the CoC
The CoC is a new concept for many people. A large number and variety of stakeholders
can be sensitized to the ideas behind the CoC and how to become involved in it through
meetings to share observations from a study tour, results from a needs assessment, or a draft
workplan.
34
\U!
|()R I’b.OI’l H 1 I V I NG h I I H
Overview of HIV care and treatment
Health-care administrators and providers in
sites establishing a new CoC require basic
In Smach Meanchey district in Koh
Kong province, Cambodia, a series of
information regarding the core care and
treatment services that PLHIV require. Topics
in this training include the following: the
natural course of HIV disease, clinical staging
of HIV, managing Ols, TB/HIV, palliative care,
meetings were held with government
!■
leaders, the local hospital, and NGOs
to learn about the CoC and discuss
J
their role in it.
PMTCT, and ART.
HIV and standard precautions
The purpose of this training is to increase
knowledge related to HIV transmission
and prevention and the role of standard
precautions (e.g. how health-care workers
can protect themselves from HIV), to
provide information regarding access to
post-exposure prophylaxis and free medical
B ip W
• f
care if infected, and to address stigma and
discrimination.
CCS Team in Campha, Viet Nam
In Campha district in Viet Nam, the local government trained the hospital staff
in HIV and standard precautions. All hospital staff—managers and administrators,
health-care workers, and cleaners and drivers—participated in the training. This
led to increased understanding and willingness among health-care workers and
other hospital staff to care for PLHIV
*
35
■
f
itingcdeiis - v
s-
.
i
and referral systei
B
Building Block 2 activities:
•
Oversee the system: role of CoC coordinators
•
Build a partnership: creating and sustaining a CoC Coordination Committee
•
Connect the dots: linking PLHIV to the services they need
•
Knock down fences: identifying and removing barriers to care
Building Block 2 presents strategies for coordinating the CoC and developing a referral
network.The roles of individuals and committees at the local level that support coordination
are also described. As with all the building blocks, the activities do not have to be
implemented in any particular order.
i
Irti
BLOCK 2-A:
Oversee the system - role of CoC coordinators
One key to success for CoC programmes in the region has been the appointment of a CoC
Coordinator. There are often two levels of coordination needed: one that relates to leadership
and one that focuses on day-to-day implementation.
Local CoC Leader: the role of the local CoC Leader (e.g. head of the local hospital or
health department) is to convene the Continuum of Care Coordination Committee
(CoC-CC).This individual is responsible for overall programme and budget decisions
and negotiating with local, provincial or national officials to improve support for
the local CoC programme.
Local CoC Manager: this individual is the day-to-day manager of the CoC and is
generally a staff member of the local health department or local hospital. The
manager's job is to guide the CoC implementation process. This includes:
Managing the implementation of the overall CoC workplan
Playing a leading role in the organization and establishment of CoC
services
Promoting the involvement of PLHIV and families in all aspects of the
CoC
Convening regular CoC Coordination Committee meetings
Meeting with key partners on a routine basis to solve problems
Developing referral systems and tools to support CoC systems
36
\I I
I II b (.ON I I M I M
\K !
Creating an enabling environment for CoC coordination
Government staff members are often overloaded with many responsibilities. Although it
is not ideal, many CoC Coordinators and Managers have full-time jobs in addition to their
CoC-related duties. CoC Coordinators
and Managers can therefore greatly
benefit from a job description that
clearly states that supporting the
CoC is part or all of their jobs (which
implies that their work in the CoC
is not a "small extra task" to do in
addition to their "real job"). Obtaining
.
explicit funding for the salary of the
Coordinator is a huge advantage
ODs to identify qualified CoC Coordinators
who in turn became the focal persons for
:
managing local CoCs. The Cambodian
MoH showed that essential staffing for
for the CoC. The performance of the
CoC will always improve when CoC
Coordinators and Managers can give
more time to the CoC.
In 2003, the MoH in Cambodia used
the national CoC Operational Framework
to create a new, centrally funded staff
I
position: the Operational District (OD) CoC
Coordinator. The MoH then supported
the CoC could be ensured by pooling
.
national-level funding.
Action point: CoC leadership
•
Define the roles of the local CoC Leader and CoC Manager and identify people
to fill the positions.
BLOCK 2-B:
Build a partnership - creating and sustaining a CoC Coordination Committee
In order to bring together all the resources and services that PLHIV and families need under
one network, it is extremely important to establish a forum to discuss and build the linkages
that make this network function smoothly. Localities that have successfully implemented
the CoC have addressed this need by establishing a CoC Coordination Committee (CoC-CC).
This committee provides the "glue" to the CoC network.
What exactly is the CoC Coordination Committee?
The CoC-CC is a group of people who support the CoC by coordinating its activities and
maximizing PLHIV's access to services. The CoC-CC determines the need for new services,
takes decisions to provide those services, and mobilizes resources to fund new initiatives.
Who are the members of the CoC Coordination Committee?
The CoC-CC is generally led by local government officials and is an inclusive body. CoC-CC
members often include representatives from the hospital and Comprehensive Care Site (both
administrators and health providers), PLHIV groups, NGOs, CHBC teams, religious groups
and other governmental departments that support PLHIV (e.g. social welfare, education).
■37
s<: a 1.1 n <; tr r ii e co nt i n u i; m o f c a r i- i or i» m» i- i i i i >. i xg u i i ii 111 v
CoC Coordination Committee takes action in Cambodia
In Koh Kong, a coastal province in Cambodia that borders Thailand, the local CoC
Coordination Committee responded to the ongoing problem of extremely sick
I
homeless PLHIV by mobilizing funds to develop a hospice at the local pagoda. The
CoC-CC ran fund-raisers and gained commitment from the provincial governor,
district authorities, police, Ministry of Women's Affairs and many others to construct
the hospice. The hospice, which was designed by PLHIV, the pagoda and CoC-CC
members, now cares for up to 10 homeless individuals at a time.
Source: CARE/Cambodici
!
s
i
t
!
What does the CoC Coordination Committee do?
The CoC-CC is generally responsible for the following:
Improving referrals across services (including the development of a referral
directory, procedures and forms) and resolving coordination problems between
n
services
Conducting semi-annual and annual planning for HIV services
Ensuring that different HIV services do not overlap each other
Identifying training gaps and needs
Conducting social mobilization activities that aim to reduce stigma and
discrimination and raise community awareness regarding HIV
How often do the committees meet?
When the CoC is first starting up, the CoC-CC may meet once a month or more often. Later,
when the CoC is more firmly established, the committee may meet every two or three
months to monitor the CoC and plan for continued improvements.
How does the CoC coordination committee fit in with other local HIV committees?
There is no need to set up an entirely new CoC-CC if there is a pre-existing committee
structure into which the CoC can be integrated. In Cambodia, the CoC-CCs are structured
as sub-groups of the multi-sectoral HIV Coordination Committees that were in place before
the establishment of the CoC and were already funded and supported by the national
health programme. In some locations in Viet Nam, the CoC-CC has been integrated into the
monthly HIV programme coordination meetings. CoC-CCs in Nepal are integrated into the
District AIDS Coordination Committees.
How can a CoC Coordination Committee be established?
Establishing a local CoC-CC is a relatively straightforward procedure. Suggested steps to
carry out this task are listed below. The CD-ROM that accompanies this toolkit contains
examples of CoC-CC standard operating procedures and other related tools.
38
st,\ I ING t !’ I H b GO N I I Nf I \l <)!
WITH II I V
Steps to establish a CoC Coordination Committee
Gain support from local health leader(s) to establish the CoC-CC.
Determine how the CoC-CC will function. Will it be integrated into an existing
HIV committee? If so, how?
Identify key people who should be on the CoC-CC and invite them to attend
the first meeting. Members should include both those who may support the
CoC as well as those who may obstruct the CoC.
Conduct the first CoC-CC meeting. At this meeting, review the current HIV
situation, PLHIV needs, and current services and gaps. Discuss how to improve
referrals, reduce barriers to important services, etc. Many committees conduct
elections to different positions (e.g. CoC-CC chair, co-chair, secretary, etc.) at
the first meeting.
Following the first meeting, the local government can officially approve the
committee including its purpose and membership. The CoC-CC can then
continue to organize meetings to address major issues that help the CoC
network run smoothly.
Maintain flexibility to add new members in order to be able to bring in new
I
|
members identified at a later date who can help improve services for PLHIV.
Notify members well before each meeting to ensure their attendance. If
important people are not attending meetings, invite the CoC Leader to meet
with these individuals in order to encourage their participation.
|
i
I
The CD-ROM that accompanies this Toolkit contains an example of CoC
Coordination Committee members and their roles and responsibilities.
Action point:
•
Establish the CoC Coordination Committee and identify members and duties.
J I •'
BLOCK 2-C:
Connect the dots - linking PLHIV to the services they need
Establishing a referral network
One of the most important objectives of the CoC is to establish a strong but simple referral
system. The CoC Leader and Manager and the CoC-CC are the essential facilitators of a better
referral system for PLHIV and their loved ones.
•
Within the health-care system, a referral system usually exists between services within a
hospital and between community and tertiary health-care services. However, this system
may not always be easy for health-care workers and PLHIV clients to understand and follow.
39
SCALING Ul» THE CONTINUUM OK (ARE EOR 1’EOI‘II- IIVING Ailil
One of tht most common problems faced by PLHIV is knowing what services are available
and how to get from point A to point B to access the services they need (see figure below).
The job of CoC implementers is to do everything possible to minimize this problem.
Figure 10: Active referral within the CoC
THE CONTINUUM OF CARE
Peer support and
voluntary services
Social and legal support
services
I
District hospitals,
HIV clinics, specialists and *
specialized care facilities
INDIVIDUALS SEEKING
OR NEEDING CARE
Homes,
community services,
hospices
I
<• ,
Health centers,
dispensaries,
traditional care
<
Care secking/providing
HIV voluntary counseling
and testing (VCT)
Active referral
ACTIVE REFERRAL NETWORK
Source; van Praag EV.
The CoC will need to develop or strengthen referral relationships in the follow areas:
Within the hospital: between essential hospital services that include counselling
and testing (CT), TB, ANC/PMTCT, inpatient department, laboratory, pharmacy,
as
infection control, and surgery.
Between the hospital and the community: between essential hospital services and
community-based services provided by CHBC teams, PLHIV support groups, NGOs/
CBOs, and faith-based organizations.
Between the hospital and other public services: between essential hospital services
and government departments that include Social Welfare, Women's Affairs, and
9
Education.
Within the community: between community-based services that include CHBC,
harm reduction, OVC care programmes, and legal and human rights services.
Between district, community and provincial health services: between community
based and facility-based services at the district level and higher-level specialized
tertiary-level health-care services.
40
' M (II < A K E !■ O K I’ !■ <> I’ I I
! I <I
Ulin
Between private and government health-care services: in most parts of the region,
private health-care services provide care to many PLHIV and others. Involving them
in the system can lead to improved care and stronger referral systems.
Establishing a Referral Network in Hai Phong Province, Viet Nam
In 2005, the People's Committee and local health authority in Hai Phong Province,
Viet Nam established a CoC-CC. Members of the CoC-CC included leaders of
local HIV prevention and care services and PLHIV. CoC-CC members used initial
|
I
I
|
meetings to focus on problems related to referral. Many problems were resolved
easily when providers from different services worked together to define the
problem and design a solution. For example, theTB hospital did not accept HIV
|
I
|
I
.
It
•.
. .
. .
J
' —
A. —
~
l-x z-x
LJ l\
test
I — results from local VCT sites and required clients to pay for another HIV test at
the hospital before accessing TB services. Since the CoC-CC membership included
the Director of the TB hospital, he was easily able to make immediate changes to
this policy and swiftly improve PLHIV's access to TB services. Major successes of the
|
|
|
I
Hai Phong CoC-CC to date include' the development of a common referral form for
the majority of HIV services, the introduction of a client-held service record book,
!
j
i
II
i
i
I
I
.
I
C
I
_l
_
!-—
I
4.^
+•
V-
/
and a HIV service guide for clients, their families, and health providers.
J
The CoC Manager and CoC-CC can take an important step towards the establishment of an
effective referral system by negotiating the use of standard referral procedures—including
common referral forms—by all CoC services. This is not always an easy task and may require
intense negotiations with service providers. For example, outpatient clinics, VCT centres and
TB services may all have different requirements for accepting and enrolling referred clients.
Negotiating compromises and streamlining referrals will result in benefits to both clients
and service providers.
The CD-ROM that accompanies th isTool kit contains examples of guidelines on howto establish
effective referral links between HIV care, treatment, support and prevention services.
Tools to support and improve referral systems
In addition to referral procedures, CoC-CCs have developed tools to improve
referrals, such as:
1.
Client-held service record booklet: this record includes a summary of
information regarding all medical and psychosocial services received by
the client from services within the CoC network. The client receives his own
booklet—each with a unique client code—when he enters the system.
The client is responsible for presenting the booklet whenever he accesses a
service. Findings, prescriptions and recommendations from each encounter
are recorded in the booklet. There are two main benefits resulting from this
tool: service providers have immediate access to the history of care revived
by the client, and the client has all of his care information stored in one
document under his control.
41
H( \IING Ci> IIIE CONTI NU I’M Of <
H E f O |< 1’Eol‘l.h I I VIM, V\ [ I !! || | V
*
2.
CoCservice guide: many CoC clients and service providers are not aware of all
the services that are available to PLHIV. A simple list of key CoC services can
be very helpful to clients and providers alike. This guide can provide a basic
profile of all services including an address, service hours, contact information,
and the types and costs of services offered. The guide can be included in the
back of the client-held service record booklet described above.
I
irujimimuaiswamn
iSyjHEnfinjfifini
1
^"3^
ir
11 S
Child service record booklet: Cambodia
3.
Adult service record booklet: Cambodia
Case managers: one of the best ways to support client access to CoC services
is to actively help them get from point A to point B. A case manager is an
individual who helps clients access the services they need and plan for their
care needs. Case managers are often posted at comprehensive care sites.
Some CoCs utilize adherence counsellors, CHBC teams or volunteers to
provide this service.
Refer to the CD-ROM that accompanies this Toolkit for an example of a client-held
service record book.
4
Action points: linking PLHIV with the appropriate services
42
•
Develop or strengthen linkages between the services for PLHIV to build a simple
and effective referral network.
•
Create tools to support and improve referral systems, such as standard referral
forms.
M AIIXG U I' THE CONTI \ I l
<»• <
Kt H’H PEOPLE I I V I N(. W I I II III
BLOCK 2-D:
Knock down fences - identifying and removing barriers to care
Even with an excellent referral network and HIV services in place, hidden barriers to care may
still block PLHIV and their families from receiving needed services. The CoC-CC can identify
and remove these barriers though the needs assessment and through contacts with PLHIV
and service providers at CoC-CC meetings or other venues.
Study after study has shown that health-care user fees (i.e. fees for services, laboratory
investigations, medicines, etc.) pose serious barriers to utilizing services. Strategies to
minimize this barrier by providing fee "exemptions""for the poor have not been effective.
Service fees almost always pose a serious obstacle to PLHIV accessing services and should
be discussed in the CoC-CC. Committees have been successful in reducing duplicative costs
to PLHIV, reducing cost of medications, and reducing or eliminating inpatient fees. PLHIV are
able to access services and remain healthy and adherent to treatment if the cost of their care
is reduced to a minimum or eliminated.
*
43
J '
■...
*
gfc d
s X* «i
; T\J.'
■
A
,A-
-
■■
Building Blocks activities:
•
Develop a hub of care - comprehensive care sites
•
Improve existing services
•
Develop and link community and home-based care services■
•
Enhance the role of NGOs, CBOs and FBOs in providing care
<
Building Block 3 provides ideas on how to enhance current CoC services and establish
new ones that are vital to the CoC. Most localities already have some HIV services in place
prior to the establishment of the CoC, such as HIV counselling and testing, TB diagnosis
and treatment, and outpatient and inpatient HIV care. Many sites, however, do not have a
specific coordinated site where these services are offered. In addition, there may not be a
strong referral system in place to link existing services. This section provides ideas on how to
better coordinate existing services, integrate new ones, and create referral links between all
services to improve PLHIV's access to care.
Incorporating new services under the Continuum of Care
Local CoC sites will offer different packages of services depending on local needs and
resources. It is not a problem if all needed services are not in place when a CoC is first
established; it is easy to incorporate new services as the CoC grows. For example, HIV clinical
care and other services for PLHIV were offered at day care centres (comprehensive care sites)
in Thailand before ART was available. ART, once it became available, was easily integrated
into the existing CoC system. Different types of training were conducted to smooth the
integration of ART into the CoC: health-care workers were trained in ART provision while
PLHIV and CHBC teams were trained in adherence counselling, follow-up care, and issues
related to Ols, ART and the CoC.
... 1
Basic services in a newly established CoC structure
The following services are often available when a CoC site is established:
HIV counselling and testing
Outpatient and inpatient HIV clinical care including palliative care as well as
the prevention and treatment of opportunistic infections
TB diagnosis and treatment
Community and home-based care
Basic antiretroviral therapy (ART)
44
I I! I- ( ON II N'.' UM Ol < A R >
I OR I’I O I’I I- 1 I V I N'G W IT II 11 I \
Expanded services in a comprehensive CoC structure
Planners in many CoC sites eventually develop a more comprehensive package of
services that often includes most or all of the following:
HIV counselling and testing
Access to ART, monitoring response to ART, changes in treatment regimens as
required
Monitoring of nutritional status, general health, progression of HIV infection,
and strength of the immune system
Prevention, diagnosis and treatment of Ols, particularly TB
Treatment to prevent mother-to-child transmission (PMTCT)
Treatment of HIV-related cancers, neurological disorders, mental illness and
other illnesses associated with HIV infection
«■
Counselling and tools to support positive prevention (condoms, needles and
syringes)
Diagnosis and treatment of STIs
»
Drug substitution, drug treatment and rehabilitation for injecting drug users
with HIV
Palliative care over the course of the disease including pain control, access to
opioids (e.g. codeine and morphine) to treat pain, care for other symptoms,
psychosocial and spiritual support, and end-of-life care
Community and home-based care
Access to economic, legal and social support services
I
BLOCK 3-A:
Develop a hub of care—comprehensive care sites
A comprehensive care site (CCS) is the centre of a local CoC. The CCS offers PLHIV and their
families essential care, treatment, support and prevention-related services all in one site. The
CCS is a crucial part of the CoC because it is both the hub and heart of care:31
Hub: the CCS provides many needed services in one location. It is a one-stop
service centre, thereby reducing cost, time and confusion for PLHIV, families and
health-care workers. The CCS improves referrals and links with other important
hospital-based services such asTB, ANC, lab and pharmacy and with tertiary, health
centre and community and home-based care services.
Heart: the CCS is a community—a place where PLHIV, families, health-care*workers,
managers and volunteers work, learn, discuss, eat and enjoy time in each other's
company, and develop close, long-lasting bonds. The atmosphere at a CCS is
usually one of mutual support, warmth and understanding between PLHIV, families
45
SC A LING U I’ I II I CON II N C V M Ol ( A R F FOR I* F. Ol'l. I- I I V I N <, W I I H II I \
|
tind those who work at the CCS site. PLHIV groups are usually based at the CCS and
family members of PLHIV can receive training there. CoC-CC meetings take place
at the CCS as do team-building and recreational activities that provide a forum for
people living with HIV, their families, and people from various organizations that
serve them to form partnerships and friendships.
The CCS in known by different names across Asia:
In Thailand it is known as a Day Care Centre or Comprehensive Continuum of
Care Centre (CCC).
In Viet Nam it is referred to as a Comprehensive Care Site (CCS) or Community
Counselling and Support Centre (CCSC).
4
In Cambodia it is known as the Mondol Mith Cheui Mith (MMM) or Friends
Helping Friends Centre.
In many parts of Asia such as Thailand, Cambodia,
Viet Nam and Nepal, the CCS is either integrated into
the local public hospital or else is situated in a stand
alone facility. A stand-alone CCS facility is linked to
the local hospital and other institutions that offer key
services not available at the stand-alone CCS. A CCS
that is based in a government hospital is generally
more economical and sustainable. Locating the
CCS in an existing hospital also strengthens existing
providers' skills in HIV prevention and care while
reducing any stigma and discrimination they may
C....... -•mmiwj.
CCS in Ho Chi Minh City, Viet Nam
feel towards PLHIV.
/A hospital-based CCS draws on established systems and services such as inpatient care,
laboratory, administration and training. Locating the CCS in a hospital that offers outpatient
services improves cost-efficiency by allowing it to screen patients carefully at the outpatient
level, thus ensuring that only those who truly require inpatient care are admitted. Other
benefits of basing the CCS in a hospital include the following:
Relevant hospital staff receive training, sensitization, and benefits from other capacity-building
activities.
The hospital receives additional support and resources including renovation, supplies and
new clients.
The referral system within the hospital is strengthened, reducing problems, complaints and
frustrations with services.
HIV care services become
"Right at the door of the building, I felt
more efficient by using a
comfortable with the centre".
broad team of providers
(PLHIV, NGOs, volunteers),
resulting in reduced burden
on hospital staff for both
outpatient and inpatient care.
46
PLHIV client at a Community Counselling
and Support Centre in Bind Thanh, Viet Nam
k
SCALING CP I HL (ON I INCI M <H ( ARE FOR PEOPIE LIVING WITH HIV
A clear entry point to care for PLHIV is established, leading to improved organization of facility
based and community-based care.
Overall costs of care for PLHIV to the health-care system are reduced when care is integrated
within an existing facility.
Locating a CCS in a stand-alone facility can be beneficial when stigma and discrimination are strong and
PLHIV do not feel comfortable seeking services in a public hospital. This is particularly the case among
very hard-to-reach, highly stigmatized populations. The stand-alone CCS may also be more appropriate
in urban centres where the number of PLHIV in need of care is high and a stand-alone community
based CCS can offer several important services in one easily accessible location. An example of this is
the Community Counselling and Support Centres in Ho Chi Minh City, Viet Nam that offer integrated
prevention and care services. These centres are managed by the hospital in the district where they are
located and PLHIV are able to access hospital-based services that are not available in the centre.
Figure 11: Integrated hospital-based CCS and linkages in Viet Nam
LOCAL CONTINUUM OF CARE NETWORK
PROVINCIAL COC COORDINATION COMMITTEE
Provincial Hospitals
OB/GYN Hospital
TB/Lung diseases
Hospital
Provincial Level
DISTRICT COC COORDINATION COMMITTEE
Specialized Prevention
Services
PLHA
Support Group
District/Commune Level
[
DISTRICT HOSPITALS
' VCT
CCS
PLHA&
Family
Social
Services
(egOVC)
Home Care Teams
Source: Family Health International
How to establish a CCS
The main approaches and activities involved in the establishment of a comprehensive care
site in a district setting are described below.
Services provided at the CCS
The core services that are provided at or coordinated through a well-established CCS vary
according to local circumstances but often include the following:
47
\|{|
I OR I'!■. OP I. E I. |V INC Wil II nil
HIV counselling and testing
Ol-related prevention and treatment services
Palliative care
ART
Nutritional care
Peer and psychosocial support
HIV/STI prevention-related services
Referrals forTB/HIV, PMTCT, community and home-based care and support, as well
as tertiary-level health and social support services
Based on need, additional services may be offered at or coordinated through a CCS. These
services include:
Psychiatric services
Drug dependency counselling
Needles and syringe exchange or distribution and treatment (e.g. opioid substitution
therapy)
Income generation services
1
Preventive counselling
Condom distribution
Physical facilities and personnel at the CCS
The CCS must be located in an adequate, suitable physical space if it is to function smoothly.
The number of required rooms and staff members will vary from site to site and will depend
on the number of PLHIV that a facility will serve and the services that are offered. At a
minimum, space is needed for the following:
a
A designated area for outpatient care
A private place for providing adherence, care and supportive counselling
A meeting venue for PLHIV groups, the CoC Coordination Committee and other
groups working on planning and coordination
A work area for the CHBC team if they are based at the CCS
(
CCS staffing in Cambodia
In Cambodia, for example, minimum staffing levels at the Friends Helping Friends ^eritre
(i.e. the MMM) include the following: a chief physician; a nurse with primary responsibility
for patient registration and files, triage and dispensing medication; and a counsellor for
|
|
|
positive living, treatment adherence and community referrals.The MMM team refers^PLHIV as
|
iry to services outside the MMM such as lab, radiology, TB, and ANC. Many CCSs in the
necessaig — ■— .
... with
...u all activities. In
i. some
^arr;cu/hprp
region include PLHIV and...
other volunteers who
assist
CCSs where
’
patient load is heavy there are two physicians dedicated to the CCS and additional physicians
rotate in from other hospital departments. Additional CCS staff requirements may include
:
case managers or social workers, harm reduction counsellors, nutritionists, and psychiatrists.
A stand-alone CCS is likely to have additional staff requirements including a lab technician,
pharmacist, lab specimen transferral volunteers, and support staff.
48
>
SC A 1 I NG Cl‘ TIIF (.('MIMTM «• I < A I! h ! <’ R I' I- O P I H LIVING W II II II I V i
I
Staffing requirements for a hospital-based CCS depend on resources available, services
provided and local needs. The number of staff can be smaller at sites where the CCS is
integrated into a hospital because the clinic can draw upon hospital staff and already existing
departments such as laboratory, pharmacy, and infection control to provide services.
Training CCS staff
All CCS staff need to be trained to carry out their duties, sensitized to issues regarding
specific populations (e.g. IDUs, MSM, transgender, sex workers, migrants and youth) and
supported as appropriate through mentoring and ongoing supervision. Training is essential
but rarely sufficient. CCS providers need to be able to practice new skills and receive direct
feedback from mentors or supervisors.
I
In Thailand, Cambodia and Viet Nam, the first CCSs received mentoring support
from national or international experts. These "pioneer CCSs" have become learning
sites for CCSs that were established later. New CCS staff are placed at the learning
sites temporarily to work side-by-side with more experienced providers. In
addition, providers at learning sites visit new CCSs to help them improve or set
I
I
:
up new services. This approach not only helps new CoC and CCS managers and
service providers develop their skills, but also helps to create support networks
I
I
j
among providers in different CoC sites.
|
i
|
Each CCS staff position has its own training requirements. Thailand, Cambodia,
Nepal and Viet Nam have all developed training resources for key providers such
|
as physicians who provide care and treatment to PLHIV, adherence counsellors,
CHBC providers, case managers and volunteers (see CD-ROM for examples of
I
I
training tools that have been developed).
I
Management routines and relationships between the CCS and other hospital departments
Some CCSs conduct routine meetings in which all staff (including CHBC teams) discuss
priority cases that require referral or support from other providers within the CCS.
The CCS needs to work especially closely with three key departments of the hospital in order to
ensure linkages to high-quality HIV care services: theTB, MCH and inpatient departments.
TB care linkages: tuberculosis (TB) remains the most significant opportunistic
infection for PLHIV in Asia. CoC planners and implementers need to proactively
engage TB programme managers in CoC planning activities and construct strong
referral systems between TB care and other CoC services that promote easy access
for PLHIV toTB services. HIV andTB services need to work together in the following
ways under the CoC:
TB services: should conduct a HIV-risk assessment of newly diagnosed
clients who have activeTB and offer them HIV testing and counselling.
HIV services: should encourage TB prophylaxis for PLHIV ^national
guidelines permitting) once they are sure that the client does not have
active TB disease. HIV services should also build strong links with TB
services to ensure that PLHIV are screened forTB (i) whenever they display
49
4
|.IN(, ( l» THH CON II NV I'M O I- C A l( I
*
I O It I' i
I-
I
TB symptoms or (ii) before they start ART HIV service managers must
ensure that PLHIV who have TB receive effective treatment.
HIV and TB providers: should receive joint training. Training for TB
physicians, HIV physicians, adherence counsellors, CHBC team members
and CoC members on issues related toTB-HIV co-infection is essential.
Maternal child health/PMTCT
service linkages: since antenatal
care services are essential to
women and children infected
with and affected by HIV, formal
relationships need to exist between
HIV counselling and testing, PMTCT,
and HIV care services. In each CoC
site, HIV counselling and testing
services and PMTCT may be offered
through different departments or
facilities. CoC planners must ensure
that these services are linked so that
HIV-positive women know how to
access PMTCT should they want to
have a child, and pregnant women
who test HIV positive are actively
referred to MCH/PMTCT services.
The CoC-CC and the CCS should help
create formal relationships between
these services. Making these
services accessible is particularly
important since many women in
the region deliver at home and may
need significant support in order
to access information on PMTCT,
discuss their HIV status with their
husband and others, deliver at the
hospital, and visit the hospital for
!
i ■
I
r.
i
i
.
■
l'
1 'jj
___ __
I
b■ v
I
1
4
I
_ 1
PMTCT outreach worker in Kanchanpur, Nepal
In Viet Nam, the health insurance
programme for the poor holds the
potential to drastically reduce health
care costs to PLHIV. In a small number
of districts in Viet Nam the CoC-CCs
have decided to abolish all inpatient
bed fees for PLHIV. In Cambodia, the
Equity Fund is a transparently run
hospital welfare programme that
offsets most or all client costs for
services including inpatient care.
II
i
t
1
follow-up care.
Inpatient care linkages: CCSs that are integrated into hospitals often utilize hospital
inpatient clinicians to provide services. In some CCSs physicians and nurses from
the hospital rotate through the CCS on a regular basis. This results in providers
of inpatient care being trained and mentored in HIV care and treatment. This is a
useful strategy for managing human resources (inpatient providers can substitute
when CCS staff are at training, on leave or sick) and improves the quality of care for
PLHIV by improving referral linkages between outpatient and inpatient services.
It can also contribute to reductions in the stigma and discrimination that hospital
staff show towards PLHIV. In many CoC sites, CCS staff and volunteers, particularly
PLHIV, often have a role in assisting inpatient providers in around-the-clock care
for critically ill patients, helping with feeding, bathing and other essential care
services that are often provided by families rather than by nursing staff. In most
so
SCAI IX<. UP rill-
INI (M <'l
i <>>< I'KH’i r i i \ in<; wi th mv i
countries, CCS services are free of cost, but inpatient services are not. To offset costs
to client—which can be overwhelming—CoC-CCs and CCSs can negotiate with
hospital administration to reduce fees for poor patients.
The CoC needs assessment process provides an opportunity to review existing services and
determine how they can better serve PLHIV and those vulnerable to HIV and be linked more
effectively to other essential HIV services.
-
•
/v*' ' T;’’
Action points: establishing the CCS
Decide whether the CCS should be hospital-based or stand-alone.
Decide which services the CCS can offer and create linkages to other services.
||
•
Identify a physical location for the CCS with sufficient space for the planned
services.
•
Establish CCS linkages with key departments at the hospital: TB, MCH/PMTCT,
anH innatiant ora.
and
care. . .
. inpatient
.
.
•
:
t!
wT'H'i
BLOCK 3-B:
Improve existing services
In Pingxiang, China, for example, the needs assessment found that uptake of the existing
PMTCT services was low and that lack of awareness of the service and stigma and
discrimination were barriers to access. The CoC coordination committee provided a forum
for discussing how to improve the existing PMTCT service and how to link it to the CCS,
which was at the time just being set up.
Community and home-based care (CHBC) services are essential parts of the continuum of
care and complement facility-based care, treatment and support services for PLHIV. CHBC
maximizes the health and well-being of PLHIV and their families by:
.'1
■'T : :• ; |
i
BLOCK 3-C:
Develop and link community and home-based care services
Promoting positive living
Providing palliative care, treatment, and adherence support
Assisting clients to access needed services
In the CoC, CHBC services are often provided by interdisciplinary teams that include PLHIV,
health-care workers and others. CHBC teams often refer clients to health facilities for routine
and emergency care and to other community and government resources for OVC care,
economic assistance and legal support. Since many PLHIV prefer to receive care at home,
CHBC personnel play an important role by helping them to live and die with peace and
dignity. CHBC teams also play a fundamental role in supporting and reinforcing services
offered at the CCS such as ART (e.g. managing side effects and adherence), TB treatment,
PMTCT and opioid substitution therapy (OST).
^^s===--'=r-=—
cW - SOCW>.KA''-^A
Korarna nyaio
Bangalore -
(CLIC)
51
pi 5'32-5
ism;
SCALING Ul’ THE CONTINUUM OF CARE I Ok I’F. l> I’1.1-. HUM.
III \
Improving CHBC services
To optimize the role of CHBC services in supporting PLHIV, CoC sites can:
Needs assessment of CHBC services
CoC implementers should consider the following questions when deciding how
to strengthen or establish CHBC services:
To what extent are CHBC services in place and how well are they linked to
facility-based health services?
What types of training have CHBC service providers received? Have they been
*
trained in vital skills such as adherence counselling?
Are CHBC teams supplied with basic medicines to treat mild to moderate pain
and other symptoms?
Is it possible to base CHBC services at the CCS so that they are well-linked to
facility-based care, thereby reducing duplication and gaps in care to PLHIV?
How well do CHBC services address stigma and discrimination and can they
do more to create a more accepting and enabling environment for PLHIV and
their families?
Do CHBC services provide care to OVC and do they need training to do a
better job of providing care to all members of the families of PLHIV?
St
^3
Base CHBC teams at the CCS so they become part of the CCS team. Encourage CHBC
team participation in CCS and CoC meetings and in case conferences to promote a
smooth flow of care between home/community and the CCS and other facilities.
Ensure that PLHIV lead or play a strong role in participating in CHBC services.
Members of CHBC teams vary site-to-site but often include a partnership between
PLHIV, health-care workers and the community. Train teams to address the needs of
both adults and children so that they can provide care for families more holistically.
Training CHBC team members
Many countries provide CHBC team members with an initial training of one or
two weeks duration. Supervisors then give additional on-the-job support to CHBC
team members to reinforce the skills and knowledge acquired during the training.
For example, NCHADS in Cambodia has developed a national training package
for CHBC team members that is complemented by detailed standard operating
procedures including job descriptions for CHBC teams (see CD-ROM). All CHBC
service providers should be financially supported for their work and valued as an
j
52
intrinsic part of the health-care system.
Train, supply, supervise and support CHBC providers. CHBC teams need to be
trained, supplied and supervised.This includes providing teams with basic training,
supplying them with medicines to care for 01 symptoms and other supplies, and
supervising their performance on an ongoing basis. Staff from the CCS, the local
hospital and PLHIV groups can provide supervision. Training protocols and service
delivery guidelines for CHBC teams vary by country.
Reinforce the voluntary and
confidential nature of CHBC
services. Becoming a client
of CHBC services should
always be a voluntary act.
CoC planners can reinforce
the right of PLHIV to decline
CHBC services, given that
medical personnel who visit
PLHIV at home may be viewed
with suspicion by community
members and result in
inadvertent disclosure of
HIV status. Teams can reduce
problems for clients by not CHBC in Thailand
wearing or bringing anything
with them that indicates they are CHBC workers. CHBC teams in some CoC sites
in Viet Nam and Nepal are required to sign a commitment to confidentiality and
quality service to reinforce the importance of voluntary service provision and
confidentiality.
Roots of CHBC in Thailand
Thailand has a long history of community and home-based care. In the early
1990s, PLHIV in northern Thailand began responding to the care needs of their
|
'
peers by providing care for them in their homes. These efforts were gradually
supported over time by local health-care workers, pagodas, churches, CBOs, NGOs
and other organizations. This led to the creation of a network of CHBC services in
Chiang Mai, Chiang Rai and eventually in other parts of Thailand. CHBC providers
|
I
I
1
worked closely with day care centres and hospitals to refer clients to the hospital
|
j
and provide ongoing medical and psychosocial support.
}
Action points: improving community and home-based care services
•
Perform a needs-based assessment of CHBC services and use the findings to
improve CHBC services.
•
Provide training for CHBC team members.
*
53
_.\l ING til’ THK CON IINVl M Ol < AKE FOR I'l-.U P 1.1-. I.IVING V\ i I 11 11 I \
BLOCK 3-D:
Enhance the role of NGOs, CBOs and FBOs in providing care
Each CoC is implemented and supported by a coalition that includes government health
care officials and providers, international and local non-governmental organizations (NGOs),
community-based organizations (CBOs), and faith-based organizations (FBOs). These latter
organizations provide many services that are not offered through the government system.
They are often part of the initial planning and development of the CoC, serve as members of
the CoC-CC, offer technical and financial resources, and are providers of a number of services
including CHBC and care for orphans and vulnerable children.
Non-governmental and community-based_orqanizations
Local and international NGOs can play important roles both as direct providers of services—
complementing services providing by the government—as well as through building the
capacity of government, CBOs and other organizations. In northern Thailand, for example,
NGO volunteers become part of the CCS team, working side-by-side with government
health-care workers and PLHIV to provide care, treatment and support services.
Local NGO support for the CoC in Rupandehi, Nepal
In Nepal, a local NGO known as WATCH has helped the government District
|
AIDS Coordination Committee (DACC) establish itself as an active coordinating
I
mechanism for providers of care and prevention services in Rupandehi district.
WATCH helped the DACC call members together to map existing service providers
in order to determine where gaps existed and to develop a referral system
I
between services provided by the government, PLHIV groups and NGOs. WATCH
!
and its partners also supported the DACC to identify areas for advocacy. Since
hospital-based HIV clinical services including ART initially were not available, the
DACC advocated with the regional hospital to increase the scope of the HIV care,
I
I
treatment and support services it provided. At the same time, WATCH nurtured
I
the development of Rupandehi's first PLHIV group and helped it to become
incorporated. That group—Asha Jyoti—is now a strong force for advocacy and
j
has motivated the DACC to champion development of essential care services
for PLHIV. This advocacy, coupled with resources made available by the national
AIDS programme to the local hospital, has resulted in the establishment of an
outpatient clinic for PLHIV. This clinic was planned
planned within
within the
the framework
framework of
of the
the
j|
CoC and was therefore easily integrated.
Community-based organizations (CBOs) are grassroots groups that are strategically
positioned to address specific issues in their community. They can effectively provide
support for households made vulnerable due to HIV, intervene when PLHIV and families are
being discriminated against, and provide support and companionship when people feel
isolated or rejected by their community.
54
s ( A 1 I N G V )’ IMF, CO N I I X 0 I1 M O I C A R K I O R I* HO I* I I
I I V I X <. Willi II I \
I
Empathy clubs
;
The Women's Union in Viet Nam (a national governmental MGO or CONGO)
supports a network of CBOs in communities where HIV prevalence is high that are
known as empathy clubs. These clubs are run primarily by women who are living
i
with or affected by HIV, and include mothers, wives, daughters, and grandmothers,
i
The clubs raise funds to support their members with material needs, to run
I
!
monthly support meetings, and to go on outings. These clubs—with minimal
resources—have been able to provide emotional support and comfort to affected
families and help reduce the sense of isolation and fear felt by many families that
|
are affected by HIV
Faith-based organizations
Spirituality and religion are a very important part of life in Asia and the Pacific. While
religious beliefs are diverse across the region, places of faith (e.g. pagodas, churches,
mosques and temples) and organizations of faith are rich with potential for providing care
and support to PLHIV and their families. For example, in Thailand, Cambodia and Viet Nam,
Buddhist pagodas and monks provide
a range of support to PLHIV and
families including spiritual counselling,
hospice, and CHBC, as well as food
and shelter to homeless PLHIV and
orphans. Pagoda-based care in these
countries is linked to the CoC with
monks participating in the CoC-CC and
gatherings of PLHIV such as the MMM
in Cambodia. . Muslim clerics in some
countries play an increasing role in HIV
prevention and care through the CoC.
Christian organizations in the region
also provide care to PLHIV; one example
is the Mercy Centre in Bangkok which
offers hospice care, home-based care
and shelter to abandoned children.
Buddhist monk from a FBO in Cambodia visting
a child at home
55
I II h CON I I N UUM OF C. A K I
I OR I' I- >1’ 1.1'. 1.1 V I N G Wl I II II I V
i
A Buddhist FBO takes the lead in Thailand
Many local CoC sites have created broad partnerships with FBOs.The Sangha Meua
is an organization of Buddhists that provides support to PtHIV and families in
Chiang Mai, Thailand. The monks and their followers take in homeless PLHIV, care
for children who have been abandoned or orphaned, provide material support
to poor HIV-affected families, conduct home visits to provide spiritual support,
and offer traditional remedies to soothe symptoms and alleviate suffering. These
services are supported by donations and alms. One of the most important aspects
of support provided by the pagodas are the sermons and interventions to address
stigma and discrimination through Buddhist thought and prayer.
Widening the network: the role of government in encouraging participation of
NGOs, CBOs and FBOs
Local government leaders, CCS staff and others can actively engage the support of NGOs,
CBOs and FBOs by meeting with them to discuss how they can contribute to the CoC,
inviting them to participate in the CoC-CC, and teaching them basic information about HIV
in order to increase their support for and understanding of PLHIV.
?
Action point: widen the CoC network
•
31
56
Reach out to NGOs, CBOs and FBOs and encourage their participation in the CoC.
HIV/AIDS care and treatment: guide for implementation. Manila, WHO Regional Office for the Western Pacific,
2004.
Building Block 4 activities:
•
Provide vision - PLHIV shaping the CoC
•
Caregivers and clients - PLHIV providing and receiving services
•
United we stand - PLHIV groups at the core ofthe CoC
•
Ensure accountability - PLHIV monitoring CoC services
Building Block 4 describes the vital role of PLHIV as leaders, shapers and implementers
of the CoC. The greater involvement of people living with HIV (GIPA) movement is at the
centre of the response to HIV. The CoC promotes GIPA and provides HIV programmers with
an opportunity to see the power of GIPA in action. PLHIV must be involved at the local
level in the planning and implementation of CoC programmes—including the provision of
services—if CoC services are to be appropriate and truly meet the needs of PLHIV and their
families. When PLHIV are true partners in the CoC, it changes the way that policy-makers and
service providers think and transforms services that may be top-down or discriminatory into
care provision that promotes mutual respect and friendship.32
At CoC sites throughout the region,
PLHIV currently play roles as diverse as
managing comprehensive care sites,
serving as members of the COC-CC
and the ART Selection Committee, and
working as adherence counsellors, case
managers, and CHBC workers. PLHIV
work as volunteers to provide health
education to their peers, help PLHIV
negotiate the health-care system (e.g.
assist them to move around the district
hospital for lab tests and x-rays) and
care for hospitalized PLHIV.
PLHIV support group leads training in meditation
There are different levels of PLHIV
empowerment under GIPA (see figure
below). CoC planners can use this pyramid to assess the level at which PLHIV are supported
and empowered in their own CoC. In Thailand, the Thai Network of People Living with HIV/
AIDS (TNP+) plays a leadership role in comprehensive care sites, conducts treatment literacy
campaigns, implements programmes to enhance access to ARVs and cotrimoxazole, and
works in other areas of HIV and development. PLHIV in Thailand are decision-makers, experts
and implementers of the CoC.
57
SC A l.l N G Cl’ I II P Cl) \ ! I M I'M l * I
( A l< I- ll) R P l-.O I* I I
I I V I \ 1. W I I fl III V
Why is GIPA so important?
GIPA is the heart and soul of the response to HIV. The involvement of PLHIV in HIV
care, treatment and support has been shown to do the following:
•
Makes services more relevant and personalized
•
Makes all types of interventions (e.g. prevention messages, adherence to
treatment counselling) more credible and compelling to the target group
•
Raises awareness of issues from a PLHIV perspective, leading to the extension
of activities to include advocacy for the rights of PLHIV
•
Increases the self-confidence, physical health and sense of well-being among
PLHIV
•
Reduces the stigma attached to and discrimination against PLHIV among AIDS
workers, clients of services and communities at large
Adapted from: "Valued Voices" GIPA Toolkit: A manual for the greater involvement of
people living with HIV/AIDS. APN+, APSACO, 2005.
Figure 12: Levels of PLHIV empowerment
THE PYRAMID OF INVOLVEMENT OF PEOPLE LIVING WITH HIV AND AIDS (PWHAs)
The pyramid shows the increasing levels of involvement of PWHAs. The GIPA principle advocates for involvement at all levels.
Decision makers: PWHAs participate in decision-making
or policy-making bodies, and their inputs are valued
equally with all the other members of these bodies.
Experts: PWHAs are recognised as important sources of information,
knowledge and skills who participate on the same level as
professionals in design, adaptation and evaluation of interventions.
Implementers: PWHAs carry out real but instrumental roles in interventions,
e.g. as carers, peer educators or outreach workers. However, PWHAs do not design the
intervention or have little say in how it is run.
Speakers: PWHAs are used as spokespersons in campaigns to change behaviours,
or are brought into conferences or meetings to "share their views" but otherwise do not participate.
Contributors: activities involve PWHAs only marginally, generally when the PWHA is already well-known.
For example, using an HIV-positive pop star on a poster, or having relatives of someone who has recently died of AIDS speak
about that person at public occasions.
Target audiences: activities are aimed at or conducted for PWHAs, or address them en masse rather than as individuals.
However, PWHAs should be recognised as more than (a) anonymous images on leaflets, posters or information, education and
communication (IEC) campaigns, (b) people who only receive services, or (c) as "patients" at this level. They can provide important feedback
which in turn can influence or inform the sources of the information.
Source: Paxton S. Steps ro empowerment: living with I HV at the response to AIDS in Cambodia. Phnom Penh, Policy Project
Cambodia. 2006.
58
JJ
S(.AII.\<; IP I HF (.(in I I \ i: C \| of CARE FOR P FOP IF 11 VINO W II II II IV |
BLOCK 4-A:
Provide vision - PLHIV shaping the CoC
The continuum of care in Asia and the Pacific has its origins in PLHIV activism. PLHIV groups in
northern Thailand approached health-care officials in the late 1980s and advocated that the
health-care system take action to develop hospital-based care for PLHIV.33 The subsequent
negotiations, planning meetings and development of services for PLHIV created a level of
understanding and respect between PLHIV, government health planners and health workers
that transcended fear, stigma and discrimination (see box below). The role of PLHIV evolved
to the point where they eventually took the lead in providing CHBC services and now play a
major role in many other aspects of the CoC.
Action points: promoting PLHIV leadership
•
Make PLHIV meaningful partners in the process of CoC development.
•
Support the development of PLHIV groups through capacity building and funding.
BLOCK 4-B:
Caregivers and clients - PLHIV providing and receiving services
PLHIV in many parts of the region provide a diverse set of services to others with HIV. By
acknowledging the key role that PLHIV have in meeting the needs of their peers, service
managers and providers enhance their
1
ability to provide effective care and
prevention services to PLHIV. PLHIV
also respond to gaps in services and
form their own services. For example,
PLHIV-led organizations in Nepal have
responded to the needs of homeless
PLHIV and those who are residing in
rehabilitation centres by setting up
day care centres, emergency shelters,
and residential sites for PLHIV who
have nowhere to live. They provide
services at these sites that include care
and treatment, counselling, provision
of food, drug relapse prevention, and
friendship.
I
II ®
“
Training PLHIV to provide CoC services in Thailand
*
59
scai inc; i;i* thk con nw cm
Involvement of PLHIV in the CoC in Thailand
PLHIV in Thailand have been providing peer support, education and advocacy for
over 10 years, through a network of hundreds of self-help groups that spans the
whole country. As they have developed gradually from passive consumers of health
care to active partners in NGO and state health care services, they have built their
confidence and pride as well as earning the respect of public health service staff.
Comments by key stakeholders
j
"In government we treat people living with HIV/AIDS as partners... they have a
very important role in educating people and communities, helping to diminish
stigma and discrimination, and giving mutual support. They are very important in
some of our decision-making. We recognize their outstanding work."
Dr SombatThanprasertsuk, Director, Bureau of AIDS,TB and SI I,
Ministry of Public Health, Bangkok.
"Treatment is not only an issue for doctors. People living with HIV/AIDS should be
in the driver's seat."
Mr Kamon Upakaew, Chairman, Thai Network for People Living with HIV/AIDS
"People living with HIV/AIDS (PLHIV) have a lot of information about opportunistic
infections and about antiretroviral therapy. This makes health staff more active as
they have to stay ahead. It's good if PLHIV can screen themselves and help their
friends: health staff need to discuss treatment with PLHIV, but now they don't need
to spend a lot of time explaining basic information.. .These trained PLHIV are good
to work with. They are expert trainers of their friends, they can plan their work and
they can carry out their plans."
Ms Porntip Kemngern, Nurse, northern Thailand
"If I were not HIV-positive I would still be a housewife and be working in the rice
field. I would never have learnt how to say what I want or how I feel. I would never
have learnt how to discuss health problems with my doctor."
Ms Buarian, north-east Thailand
Excerpt taken from: "Valued Voices" GIPA Toolkit: A manual for the greater involvement
ofpeople living with HIV/AIDS. APN+, APSACO, 2005.
Action points: enabling PLHIV to become care providers
tio
•
Work with PLHIV as partners and co-planners of CoC services and systems.
•
Make a policy of involving PLHIV in all HIV care and prevention services to work
as staff and volunteers side-by-side with others in meaningful roles.
•
Provide training and support so that PLHIV learn news skills.
•
Pay PLHIV fairly for their work.
•
Support PLHIV to develop services that are led and managed by PLHIV.
J
I
■
(ARP 1 <> R P M) I’ I F i I X I X (. W 1) It HIV |
BLOCK 4-C:
United we stand - PLHIV groups at the core of the CoC
The existence of independent PLHIV groups is a prerequisite to an effective CoC. An
outstanding example of how PLHIV groups can play an important role in a CoC is found
in Thailand, where TNP+, Medicins Sans Frontieres (MSF), and AIDS ACCESS Foundation
(AAF) formed a joint initiative to promote the establishment of centres for Comprehensive
Continuum of Care (CCCs) in 2002.34 Other countries where PLHIV groups contribute to care
and support include Nepal, where PLHIV groups work in hospitals to provide supportive care
services to PLHIV in both outpatient and inpatient departments.
Action points: supporting the development of PLHIV support groups
•
OB
Identify existing PLHIV groups, meet with them and invite them to play a lead
role in shaping the CoC.
•
Ensure that PLHIV group leaders are fully involved in the core CoC planning team.
•
Support PLHIV groups to develop group action plans and to secure funds to
implement their plans.
•
Provide meeting space for PLHIV groups at the CCS or another convenient site.
•
Promote cross-learning and meetings with other PLHIV groups in the area as
well as with national or local PLHIV networks.
61
S < All
UP THE CONTINUUM OF < A K I- FOR
I I v i n<; w i i H
hiv
i
«
BLOCK 4-D:
Ensure accountability - PLHIV monitoring CoC services
People living with HIV—in their roles as leaders of the CoC, staff members of CoC services,
and clients of the CoC—need to fully participate in the monitoring and assessment of the
CoC. Given the variety of roles that PLHIV play in the CoC, their involvement is crucial to an
accurate determination of the degree to which the CoC has successfully met their needs.
Action points: involving PLHIV in monitoring the CoC
•
Make PLHIV part of the team that determines how to monitor the CoC and what
the indicators of success will be.
Include PLHIV on the team that assesses services.
•
Ensure that PLHIV work with the team to analyze findings and provide feedback
and recommendations on the quality of the CoC.
See Section 6 of the Toolkit for more details on monitoring and evaluating the CoC.
62
52
AIDS discrimination in Asia. Bangkok. APN+, 2004.
33
Takai A et al. Correlation between history of contact with people living with HIV/AIDS (PWAs) and tolerant
attitudes toward HIV/AIDS and PWAs in rural Thailand. International Journal of STD & AIDS 1998; 9:482-484.
34
Kumphitak A et al. Involvement ofpeople living with HIV/AIDS in treatment preparedness in Thailand: case study]
Geneva, WHO, 2004.
■ '
■
'■ A
'
'
■'
■
■'
.
'
'■
•
■
Building Block 5 activities:
•
Develop client-friendly services
•
Involve families
•
Mobilize the community
Building Block 5 discusses ways to create a supportive environment for PLHIV in health-care
settings, the family and the community.
1 1
BLOCK 5-A:
Develop client-friendly services
Stigma and discrimination are major barriers to clients' access to CoC services in many
countries. CoC planners need to include strategies in their CoC plans that build an enabling
environment and reduce barriers to the utilization of services. Planners can build in service
features that promote privacy, confidentiality and trust in CoC services, especially if they are
sensitive to stigma and discrimination during the CoC design phase.
In Pingxiang, China, PLHIV perceived such high levels of stigma and discrimination
that many of them stated they would be reluctant to attend an HIV clinic if it
was designed as a stand-alone service and not integrated into the local hospital.
The PLHIV advised planners that the clinic had to be placed at the hospital but
that it should not have a special sign, and the entrance should be through the
main entrance into the hospital so that PLHIV could enter anonymously. Planners'
sensitivity to these recommendations resulted in rapid uptake of services by PLHIV
and reported satisfaction with provider interactions.
63
•\ LING Cl’ till-. CON II N VU M OF C A KF FOR I I
‘ :
BLOCK 5-B:
Involve families
The families of PLHIV clients are an unmatchable support system for PLHIV. However, they
can also be a source of stigma and discrimination for PLHIV. CoC planners should build
a role for clients' families into the CoC services in order to promote their understanding
of HIV—an understanding that will in turn increase their ability to help their family
members manage their disease
at home. In many settings, CHBC
teams have the most frequent
contact with clients' families
and can effectively cultivate the
development of family support
for clients. The organization of
"family days" at the CCS is an
inexpensive yet effective way to
build solidarity and confidence
among affected families.
i
The MMM in Cambodia is a successful example
of the integration of client families into CoC
|
services. The provision of training to families
affected by HIV on caregiver skills and adherence
|
I
support in some CoC sites has boosted the
confidence of those caring for PLHIV and has
I
|
lead to real improvements in the lives of PLHIV.
|
!
'r
BLOCK 5-C:
Mobilize the community
In addition to building family support networks for clients, CoC planners can also include
initiatives to raise community support for the CoC. These activities may include meetings
with well-positioned local leaders to provide them with information about the CoC and seek
their support in promoting referrals, developing linked services, and raising funds to support
community-centred aspects of the CoC. Support can also come from the private sector. In
Viet Nam, for example, Unilever donated products for the community and CHBC kits.
I Ji
I
64
•
. .1
Community-based clubs for children in HIV-affected
Candlelight vigil organized by the Provincial Network
villages in Cambodia
of PLHIV in Battambang, Cambodia
S< Ail NG I P 1 11 FCON I I NUUM O1
<. \ R 1- 1 ; > It I’ 1 <• I' I I
\v I I II II I V I
I I\ I\
CoC coordinators can reduce stigma and discrimination by conducting educational
activities that target members of the general public in neighbourhoods where PLHIV live.
These community information sessions preserve client anonymity while at the same time
strategically targeting resources at areas where they are most likely to make an impact.
The CD-ROM that accompanies this Toolkit describes activities that can create a better
community environment for PLHIV.
Social mobilization activities in areas with high levels of stigma and discrimination during
the early stages of the CoC can improve levels of community awareness and promote CoC
activities.
Social mobilization activities that can reduce stigma and discrimination
Community information meetings
Door-to-door visits in the community by local volunteers
Community quizzes during events and holidays
•
Talks by respected community figures such as religious leaders, celebrities and
important officials
! i
t
■ 1 ■
■ i:
■■ ■
Action points: creating a more client-friendly environment
ift
•
Interview PLHIV to identify the barriers they encounter when they seek services.
•
Build a role for clients' families into the CoC services.
•
Conduct social mobilization activities in the community to reduce stigma and
discrimination.
•
Work with people who have communication and mass media experience
to develop interpersonal and mass media tools for reducing stigma and
discrimination, increasing community acceptance of PLHIV and improving
awareness of HIV-related services.
■
■
■
■
..
*
65
Mai;-
I?, i t
ter
Building Block 6 activities
•
Build capacity through training, mentoring and supportive supervision
•
Develop procedures and tools to support the CoC
Building Block 6 provides guidance regarding how to build capacity and develop tools
that help the CoC function smoothly and effectively. The topics covered include training,
protocols and other tools.
iI
BLOCK 6-A:
Build capacity through training, mentoring and supportive supervision
Depending on the size of the CoC and its staffing and resources, health facilities at different
levels of the health-care system provide a wide range of medical and psychosocial support
services for PLHIV.The staff in these facilities will assume new responsibilities under the CoC
that will require new knowledge and skills.
Health-care workers and other service staff who work in the CoC should receive a
comprehensive package of training in working in HIV/AIDS care that includes information on
basic HIV transmission, disease progression, treatments, infection control and occupational
exposure, confidentiality and palliative
care. The sensitization of the health-,
care providers and support staff on
issues related to IDUs, sex workers,
MSM, prisoners, youth and migrants
is crucial for building acceptance and
understanding for those populations.
Supplementary training should be
provided for concerned personnel
who work in specialized areas such as
CT, ART and 01 management, PMTCT,
TB and HIV treatment and CHBC. Table
1 below illustrates examples of the
structure and duration of capacity
building activities from several
countries in the region.
66
Clinical mentoring in action, Campha CCS, Viet Nam
SCALING IP III F CON'I I M, IM Ol CARP I OR I'P.O Pi I
I I VIM, n I I II II 1\
Table 1: Duration of capacity-building activities for HIV clinical
care including ART for physicians in selected countries
Training activity
Classroom / practical training
i Several sites in Viet Nam
Cambodia
Guangxi, China
5 weeks
(including final wrap-up)
2 months
2 weeks+ (non-contiguous)
1 week
1 week
Clinical rotation
1------------------
On-site mentorship
6 weeks
(field attachment at outside
clinic with support from
senior physicians there)
Supervision visits
Quarterly (more frequently
if there is NGO partner
support)
Semi-annually
Quarterly (supplemented by
ongoing back-up by phone
and email)
Refresher training (on
annual basis)
2 weeks (planned, not yet
implemented)
1 week
1 week
2+ weeks
2-6 weeks
Training health-care workers to provide services under the CoC
A two-stage approach to training health-care workers is often most effective:
Stage 1: Training on the technical aspects of a new service ideally occurs
immediately prior to launching the service. Technical aspects of the
training are generally based directly on service standards and protocols
and should use MoH guidelines or a national curriculum where
available. Training should include as much practical clinical training as
possible. The length of these training activities, before the launch of
clinical services, ranges from one week to two months, depending on
the topic.
Stage 2: Classroom trainings can be followed by on-site (two to six weeks)
mentoring from a clinical care professional at the participants' work
sites. This second stage of training provides participants with the
opportunity to benefit from one-on-one expert instruction while they
work with patients in their own workplace. Participants can also be
posted for short durations in other CoCs that have been designated
as learning sites where they can practice their new skills under the
mentorship of more experienced colleagues. This type of mentorshiporiented training strategy has proven highly effective in the rapid
preparation of providers to perform new duties.
[
j
*
67
; p I HE (.ON IINUUM Of C A K l; I-1 > k PEOf'l.h I I VINO WITH II I
Capacity-bsilding activities offer an invaluable opportunity to build capacity for the national
HIV/AIDS programme and future expansion of CoC efforts. The benefits of capacity building
can be maximized if local or national specialists lead the CoC training team and become
qualified senior trainers capable of independently conducting training programmes. These
same individuals often can be contracted to provide on-site mentoring (as described above)
to teams of CoC service providers in areas where the CoC is being introduced.
Specific capacity-building issues for community-level he.alth-care providers
Community-level health-care centres play an important role in the CoC through providing
first-line health care to PLHIV and linking PLHIV to the CCS. Health centres can conduct a
variety of services for PLHIV that include follow-up of 01 treatment or ART for adherence
support and treatment of side effects,
health promotion, antenatal care (and thus
PMTCT), STI consultation and treatment,
family planning, directly observed therapy
short-course (DOTS) for TB, provision or
supervision of CHBC, and follow-up of other
HIV-related services. Some health centres
even provide HIV counselling and testing
•fl
Mi
t
'iWiw w '''' J
[ I
services.
< I
CoC planners should ensure that health
centre staff are trained to carry out these
activities, sensitized to specific issues
regarding PLHIV clients, and included as
members of the CoC-CC. The need for this
is illustrated by an example from Cambodia,
where health centre staff were not involved
in the early stages of planning for the CoC.
Provincial leaders identified their lack of
involvement as a barrier to success and
included them in CoC-CCs and relevant
training activities. This action led to an
increase in referrals from health centres to
the CCS for HIV testing and care services.
68
Training health care workers in HIV
care in Kathmandu, Nepal
IHH CO NUN'. U.M 01 ‘ ARE FOR PEOI'I.E I.JVING w I ! H UK
BLOCK 6-B:
Develop procedures and tools to support the CoC
A large number of tools and procedures that support the structure of the CoC have been
described throughout this Toolkit. These tools include training curricula, referral forms,
patient record books, and workplan templates (see table below). Examples of these and
other tools can be found on the CD-ROM that accompanies this toolkit.
Table 2: Tools to support the CoC
Description
Tool
Document reference
Needs assessment report
An example of a needs assessment conducted before
launching a local CoC.
Workplan template
Template that can be modified and used to develop a local or
national CoC workplan.
BB1-C
Service standard operating
procedures (SOPs)
Examples of SOPs for comprehensive care sites, community
and home-based care and other services.
BB2-B, 3-C
CoC Coordination Committee
terms of reference
An example of CoC Coordination Committee members and
their roles and responsibilities.
BB2-B
Referral network guide
Guide on how to establish effective referral links between
HIV care, treatment, support and prevention services.
BB2-C
Client-held service record
book
Contains summary of information regarding medical and
psychosocial services received by the client from services
within the CoC network.
BB2-C
Training curricula
Local, regional and global training packages for health care
workers in HIV care, treatment, support and prevention
developed by ministries of health, WHO and FHI.
BB3-A, Section 5.2.3
Job descriptions and
professional codes of conduct
Examples of CoC job descriptions and provider codes of
conduct.
BB3-C
Community mobilization
resources
Guides from APN+ and other organizations on how to
increase community support for HIV care and reduce stigma
and discrimination.
BB5-C
National CoC framework
Documents prepared by the MoH in Cambodia to guide the
implementation of the CoC throughout the country.
Section 5.2.1
Quality assurance/quality
improvement (QA/QI) tools
Technical guidance
Building Block (BB)l-B
Examples of tools used in Viet Nam to assess quality of
comprehensive care site and community and home-based
Section 6.2
care services.
A selection of technical guides including the WHO Integrated
Management of Adolescent and Adult Illness (IMAI) series.
69
ig done? An overvie*
luidance: why and h<
National governments throughout the region can play a pivotal role in guiding and
facilitating local-level efforts to implement the CoC. Ministries of health can provide this
support through formulating policy, strengthening health systems, developing procedures
and tools, building training capacity, and providing guidance and funding for human
resources. This section of the Toolkit describes regional experiences in a few countries
regarding national-level support and scale-up of local-level implementation of the CoC.
1.
What's being done? An overview of national-level support
for the CoC
The relationship between local efforts to design and implement CoCs and national efforts
to guide and sustain the CoC approach should be mutually supportive and reinforcing.
Experiences in Cambodia and Thailand illustrate two basic strategies to support the CoC: (1)
national leadership develops and expands the CoC approach (top-down), or (2) local leaders
design and implement the CoC, with the national government building on initial local efforts
to support the expansion of the CoC to new sites throughout the country (bottom-up).
Either of these approaches can be used to support the development of the CoC and push it
forward—neither is right or wrong. Whatever the approach, lessons learned at the local level
inform and influence national policies and guidelines while national-level agencies support
and guide local-level efforts. Each approach is profiled below through a brief description
of the experience in the two countries that pioneered their development: Thailand and
Cambodia.
A bottom-up approach: local-level efforts take the lead in Thailand
PLHIV groups, local government and other partners pioneered the development of the
initial CoC sites in Thailand. The Ministry of Public Health (MoPH) eventually supported
these pilot efforts by reviewing and documenting them and identifying the key lessons
learned. The MoPH then used these conclusions to formulate the guidance and support
that it subsequently offered to other provinces that wanted to introduce the CoC. The Thai
MoPH, over the past decade, has increasingly systematized the support that it offers
the
comprehensive care sites that have been established across the country.
71
LULJ___ MIL
I.ING UP THE CON IINUUM (>l
< A i< I
I |- l> |- I F I I \ I X t. \V I I II HIV
Promotes partnership and inclusion: the CoC covers a broad array of services that
is provided by a coalition of partners. A CoC framework helps to coordinate the
3.
contributions of government, PLHIV, NGO and FBO service providers.
Promotes collaboration and improved referral between different health
4.
programmes: the inclusion of the national TB and MCH programmes in the process
of developing the CoC framework can initiate a process of improved cooperation
and referrals between these services and the HIV/AIDS programme at both the
national and local level. Details of how these two programmes can be effectively
linked to the CoC are described below.
Integrating the PMTCT service in the CoC: coordination between the
national MCH and HIV/AIDS programmes can promote the integration
of PMTCT into the CoC framework and link it to other services for PLHIV.
Collaboration between these programmes can be strengthened through
the establishment of a joint technical working group (TWG) that develops
an integrated MCH-HIV framework, a client flowchart, criteria and regimens
for ART, and postnatal care and treatment procedures for both mothers and
children. Members of this TWG in most countries include representatives
from the MCH and HIV/AIDS programmes, paediatricians, UN agencies,
international and local NGOs, and representatives of PLHIV groups.
TB/HIV coordination: TB/HIV co-infection is common in the region.
Coordination between the National Tuberculosis Programme (NTP) and
HIV/AIDS programme can help to achieve improved outcomes for people
who have both diseases. This collaboration benefits both programmes
by prolonging the life of PLHIV, increasing the detection rate of active TB
and reaching cure rate targets (> 85%) for PLHIV with TB.The coordination
mechanism for these programmes is the same as that described above
for the establishment of a TWG for PMTCT. TWGs for TB/HIV have been
established in Cambodia, Viet Nam and other countries in the region.
How to do it: key steps in the development of a national CoC framework.
23
•
• i Can take to create its own CoC framework. These
There are a few key actions that
a country
below,- do
steps, which arej outlined
--- ------------ - not need to take place in a neat, ordered manner—in
fact, many steps will occur simultaneously. The five steps are the following:
1.
2.
3.
4.
5.
Conduct a situational analysis to identify how the CoC can be developed so that it
best responds to clients' needs
Mobilize support for the CoC concept and the development of a national CoC
framework
Prepare and fund the CoC workplan
Develop the care package and service standards
Assess initial efforts and document the CoC framework
The text below provides further details about each step for developing a national CoC
framework.
1.
Conduct a situational analysis to identify how the CoC can be developed and respond
to needs
If information regarding HIV needs is inadequate, the first step in the development
of a national CoC framework should be a situational analysis. This analysis includes
74
r H i- < «■ X 1 I X l I M < • I < \ K f I <» R I’ 1.0 I’ I.h 1.) V I X<, h 1'1 H II i V I
mapping existing services, examining current health infrastructure that provides
HIV care services, reviewing statistics related to the epidemic and service utilization,
and talking with PLHIV and their families about their needs. The situational analysis
can be conducted by a partnership of different agencies and organizations
including the national association of people living with HIV.
2.
Mobilize support for the CoC concept and the development of a national CoC
framework
Findings from the situational analysis can be used to develop a compelling rationale
for the development of a national CoC framework. Meetings and consultations can
be held with governmental agencies and departments, PLHIV, NGOs, donors and
other key partners to sensitize them to the concept and strategies of the CoC.
These meetings can also result in the development of a working group that is
tasked to prepare a national CoC framework.
3.
Prepare and fund the CoC workplan
A participatory planning process can be used to develop a workplan for the national
CoC—one that all partners can contribute to. The workplan should be costed. A
costed workplan becomes an important tool for raising funds to implement the CoC.
One strategy that has proven effective for funding the CoC is "basket funding"—that
is, to pool funds from diverse donors to support the CoC (see box below).
4.
Develop the care package and service standards
Technical working groups (TWGs) can use the national CoC framework and
workplan to produce detailed tools and guidance for service implementation.Three
TWGs performed this task in Cambodia: VCT, Institutional Care and CHBC. Members
of these working groups included government staff, PLHIV, and representatives of
NGOs and donors. This approach can serve as an effective strategy for obtaining
broad buy-in and organizing assistance from many partners to complete essential
but time-consuming work.
Funding the CoC framework
•
In Cambodia, rather than create multiple vertical programs funded by different
donors, NCHADS negotiated with donors and NGOs to fund the CoC workplan.
By basketing funds, NCHADS was able to use existing resources efficiently and
transparently. It was also able to leverage further funding from NGOs and donors.
The efficient funding of the CoC allowed NCHADS to work with the MoH human
resources department to designate core staff positions at different levels of
the CoC. Experience from several countries has shown that each province and
district requires a CoC Coordinator—a dedicated, funded officer whose job it is to
coordinate, plan and guide the implementation of services for PLHIV. Given the
long-term need for services for PLHIV, ensuring central funding for key CoC local
level staff positions is critical.
75
SCALING UP I IIE CONTINUUM O I- CAKE I OH PUHI I
i I II
W/Gs can also be given the responsibility to fill service gaps identified in the
situational analysis by developing guidelines and standard operating procedures
(see box below).
National TWGs can also develop training, mentoring and supervision packages and
plans that can be used to build human resource capacity in local CoCs. Training
curricula should be based on service standards and national guidelines and should
be evidence-based to the extent possible. Several countries in the region have
developed national training packages for providers at different levels of the health
care system. Some of these packages are summarized in the table below.
Developing national standard operating procedures: systematizing high-
quality services
A national framework for the CoC provides the basis for the development of
standard operating procedures (SOPs) that detail how to follow national technical
guidelines for various services. SOPs give service managers and providers the
information they need to provide services correctly. Training programmes that
seek to improve skills are usually based on SOPs that CoC providers can then use to
guide their day-to-day work; Atypical SOP might guide the provision ofa sendee at
a comprehensive care site.The SOP might outline all steps that should be followed
for new and returning clients for ART selection and adherence preparation, and
I
I
referrals to other services.
Table 3: Examples of national CoC training packages
Type of Training
Participants
Where
Adult HIV clinical care and ART
Nurses, physicians
Cambodia, China, Viet Nam,
Thailand, Nepal
Paediatric HIV clinical care and ART
Nurses, physicians
Cambodia, China, Thailand, Viet Nam
Palliative care including home
based care
PLHIV, nurses, physicians, social
workers, other providers
Cambodia, Viet Nam, Nepal
ART adherence counselling
PLHIV, nurses, physicians, social
workers, other providers
Cambodia, China, Viet Nam,
Thailand, Nepal
HIV case management and
counselling
PLHIV, nurses, social workers, other
providers
Thailand, Viet Nam
Examples of training packages can be found in the training section of the CD-ROM.
76
S < A I I N G UP Illi
5.
(.() N I I N t I M • • I L '. K I
I OK Pl 0 1’1 I- I KING WTI II II I \
Assessing initial efforts and documenting the CoC framework
National health officials can contribute greatly to the development of effective CoCs by
assessing local CoCs and then using the findings to document (or revise) the national
CoC framework and guide the design and implementation of the CoC in new sites.
In Thailand, the MoPH reviewed initial efforts to establish CoCs in northern
Thailand and used the results to guide new efforts in other parts of the country.
In Cambodia, NCHADS rapidly identified lessons learned based on feedback from
CoC pilot sites and used them to scale up the CoC in other parts of the country. This
rollout was done in a series of steps to make efficient use of resources. NCHADS
also documented the process of implementing the CoC in Moung Russey. This
document can be found in the CD-ROM that accompanies this toolkit.
:"■■■■■■
J
...................
Further reading
1,
Continuum of care for people living with HIV/AIDS: operational framework. 2nd ed.
Phnom Penh, Ministry of Health, NCHADS, 2003.
2.
Comprehensive and continuum care guideline for persons living with HIV/AIDS.
Bangkok, Ministry of Public Health of Thailand, 2002.
3.
Scaling up antiretroviral treatment: lessons learnt from Thailand: report ofan external
evaluation. New Delhi, Ministry of Public Health Thailand, WHO Regional Office for
South-East Asia, 2007.
—
-
4.
..
■
''
■
■'
'
■
'
.
.
■■■
:
■
;
■'
Continuum of care for rapid scale-up of care and treatment services for people living
Dzsrik KICUAr^C
with HIV/AIDS. Phnom Penh,
NCHADS, AA/UA
WHO, CUI
PHI,:')AAC
2005.
*
35
Continuum of care for rapid scale-up of care and treatment services for people living with HIV/AIDS. Phnom Penh,
NCHADS, WHO, FHI, 2005.
77
u ROVING THE COC: USING MONITORING
|K
VALUATION TO ENHANCE ACCESS TO AND
QUALITY OF SERVICES AND SYSTEMS
This section contains:
Using routine data to monitor CoC performance
•
Making use of review techniques to improve quality of care and the CoC
■I
Evaluating the benefits clients receive from the CoC through special stu< *
What do we need to know? Improving the monitoring and evaluation oi
Stakeholders who work together to design and launch a CoC will soon want to know how
well it is meeting the needs of PLHIV. Program managers in particular want to know how
the CoC is working and whether the use of services is increasing. The CoC is designed to
not only link services but also to improve their quality; managers, providers and clients will
therefore ask "How good are our services?" Ultimately, all stakeholders want to know if the
CoC has achieved its ultimate goal—to help clients achieve better health and quality of life.
This section briefly describes efforts that have been made across the region to answer these
questions.
The discussion below is organized by methods that have been used to monitor and evaluate
CoCs. The first section describes the use of routine health service data to monitor the
progress of the CoC while the second details the use of review methods to improve both
the quality of CoC services as well as overall performance of the CoC. The third section
briefly outlines ongoing efforts to evaluate the extent to which CoC clients benefit from the
continuum of care. This section then concludes with some thoughts on future directions of
monitoring and evaluation in the CoC.
1.
Using routine data to monitor CoC performance
CoC sites across the region collect information that can be used to monitor and improve
CoC services and performance. Many health officials monitor the CoC using routine data
that are collected for local reporting or for the national health management information
system (HMIS). CoC monitoring activities often focus on tracking changes in the utilization
of services (e.g. number of clients beginning ART) or changes in referral patterns between
key CoC services such asTB and counselling and testing.
The CoC Coordination Committee (CoC-CC) is best placed to analyze routine data that
illustrate the progress of the CoC and identify and solve any problems that arise. During
CoC-CC meetings at many CoC sites, committee members review monitoring data awd other
information that describe the performance of the CoC and identify gaps in service utilization
or referrals.The box below presents illustrative indicators that can be used to determine how
well the CoC is functioning.
79
(, (I- I HF LONTINUUM OF (. \ K F FOR I’F.OJ’I.F. IIVING Willi il|\
f
*
Illustrative CoC monitoring indicators
Some of the most useful indicators combine the utilization of a basic CoC service
(e.g. HIV testing) with the follow-up or referral required to ensure that clients
benefit fully from available services (e.g. return for test result). Six CoC indicators
that illustrate this principle are presented below:
1.
Percentage of clients who receive pre-test counselling or information and
then choose to be tested for HIV (i.e. "uptake" of testing ).
2.
Percentage of clients who are tested for HIV and then return to receive
final test result (i.e. "rate of return for results").
3.
Percentage of clients who test negative or indeterminate for HIV and then
return for follow-up HIV testing.
4.
Percentage of clients who test positive for HIV and are then referred to
care, treatment or support services.
5.
Percentage of pregnant women who test positive for HIV and then return
6.
for results.
Percentage of pregnant women who test positive for HIV and then receive
PMTCT services.
' ' defined
' '
1 as their measurement may not be
These indicators need to be carefully
straightforward. Difficulties that may be encountered include how to record and
measure referrals and how to define "rate of return for results" in countries that have
a two-step process to confirm HIV status with financial barriers to the second test.
Ideally, these indicators should be disaggregated by gender and age. Further
examples of monitoring indicators can be found on the CD-ROM that accompanies
this document.
For example, the CoC-CC in
Pingxiang, China used routine
service utilization data to
determine that uptake of
PMTCT services was very low
among pregnant women who
tested positive for HIV. The
CoC-CC concluded that many
HIV-positive pregnant women
were not using PMTCT services
due to the cost of services
and fear of the repercussions
of disclosure. The CoC-CC is
currently developing strategies
to improve the situation.
80
'Using surveillance data to identify
problems
Data sources outside of the routine HMIS can
also be used to monitor the CoC. In An Giang,
Viet Nam, the provincial CoC-CC reviewed
findingsfromthenational Integrated Behavioural
and Biological Surveillance survey that was
conducted in several provinces including An
Giang. The Committee noted that utilization of
counselling and testing services was low and
that new strategies were required to increase
its use.
S <. A 1 I N Ci I' I’ I II h < <1 X I I X I' I M OF Ci A R F FOR P I: O I’ I 1
2.
I I v | \ (, Vi I I II II I \
Making use of review techniques to improve quality of care
and the CoC
Health providers and officials
across the region use case
review and program review
techniques to improve the
quality of CoC services as well as
the performance of the overall
CoC. A commonly used method
is the periodic case review
whereby teams of providers
(e.g. CCS or CHBC) discuss and
resolve problems of clients who
are currently under their care.
This process can be an especially
effective way for providers who
have limited experience working
with PLHIV to gain advice and
assistance from their colleagues.
Using CoC reviews to improve services in
Viet Nam
In Viet Nam, some local CoC sites use
jointly developed quality assurance-quality
improvement (QA/QI) checklists to assess
different aspects of the CoC. QA/QI reviews are
conducted at each local CoC site every six to
twelvemonthsand result in a report with detailed
consensus findings and recommendations for
improvements. Examples of the checklists used
in Viet Nam are included in the CD-ROM that
accompanies this document.
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. ..
'
1'1 '■
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A second review method that has been widely used is the participatory programme assessment
or CoC review. This assessment consists of a quarterly, semi-annual, or annual review of a local
CoC to assess service quality, effectiveness of service linkages, the success of referrals, the
regularity of CoC-CC meetings, and the perceptions of PLHIV, their family members and service
providers regarding CoC services. The box above provides details of such an activity that is
conducted regularly in Viet Nam. The CoC review can also assess whether service providers
perceive having received any benefit from the CoC. Providers who gain something from the
CoC—whether financially, through increased job satisfaction, or some other way—will feel
more ownership of the CoC and provide higher quality, more effective services.
Comprehensive CoC review in Cambodia
In 2004 NCHADS conducted a comprehensive review of HIV services including
the CoC. Review team members included PLHIV and representatives from the
I
MoH, NGOs and donors. The review team made recommendations on how to
improve the national HIV/AIDS programme that were then built into the national
HIV/AIDS strategy.
3.
Evaluating the benefits clients receive from the CoC through
special studies
Recent efforts to evaluate the CoC have measured the extent to which CoC clients benefit
from the services they receive. FHI has collaborated with government colleagues in
Cambodia, China and Viet Nam, WHO, USAID, USCDC and PEPFAR to study the outcomes and
impact of ART provided through the CoC framework on the lives of PLHIV. These evaluations
collect data from a cohort of adult PLHIV when they start ART and then again at six-month
intervals through confidential interviews.
81
III
These evaluations are ongoing and assess the effect of ART delivered through the CoC on
client health outcomes that include the following:
81
Perceived stigma and discrimination and social support from family and friends
m
■
Health-related quality of life
Clinical outcomes including morbidity and mortality
Sexual and injecting risk behaviours, which can affect both clients health as well as
the health of individuals with whom they come in contact
In addition to the above, CoC managers have used these studies to assess the strength of
the referral system and the overall impact of access to multiple services on the well-being
of PLHIV.
What do we need to know? improving the monitoring and
evaluation of the CoC
4.
As the use of the continuum of care approach expands in the coming years, CoC managers
will need more tools and methods to help them determine where the CoC is successful and
where it needs greater support. The development of M&E approaches and tools is clearly a
priority area for the CoC.
CoC managers especially need to be able to monitor the effectiveness of the CoC coordination
framework itself. Planners and managers need information that describes referral patterns,
frequency and effectiveness of meetings, stakeholder participation in CoC activities, missed
opportunities for uptake of services, and other aspects of CoC coordination.
■■■
Further reading
1.
National AIDS programmes: a guide
support. Geneva, UNAIDS,
‘
2.
Patient monitoring guidelh
UNAIDS, WHO, 2004.
ining Toolkit: HIV
■eeS
.S
1
’ air...?' f. :,.1?i:./...w ?
IB
A framework for monii
at-risk populations. G*
programs for
iangle Park N
82
, t/' ’
gOggi.
aw
Districts, cities, provinces and countries that adopted the CoC approach have improved the
access of PLHIV to the services they need. Although countries have implemented the CoC in
different forms, several common conclusions can be drawn regarding next steps and future
directions.This final section of theToolkit highlights the following six areas of the CoC where
future initiatives hold the promise of impressive results:
1.
2.
3.
4.
5.
6.
1.
Integrating prevention services into the CoC
Improving access to HIV services among those most at risk
Establishing family-centred care
Expanding services outside of the health sector
Establishing a national CoC framework
Achieving universal access
Integrating prevention services into the CoC
Prevention is a core component of the response to HIV. While the continuum of care was
initially developed as a better way to deliver HIV care, treatment and support services, it also
provides a framework for integrating HIV prevention services. HIV prevention services that
should be made available through the CoC depend on the needs of clients but may include
safer sex counselling and provision of condoms and lubricant, STI screening and treatment,
clean needles and syringes and opioid substitution therapy (OST) services for IDUs, family
planning, and PMTCT. Interventions that promote HIV prevention among IDUs, sex workers,
MSM and others who are vulnerable to HIV can be offered as stand-alone services through
drop-in centres, prisons, drug rehabilitation services, or in the community by peer educators
and outreach workers. However, preventive services also need to be linked to care, treatment
and support interventions. These linkages promote better access among PLHIV and those
who are vulnerable to HIV to the services they need, when they need them.
Incorporating prevention services in the CoC
A leading example of how prevention services can be incorporated into the
CoC is found in Ho Chi Minh City, Viet Nam. A new initiative is being built into
the existing district CoCs there that addresses the needs of IDUs who have been
released from rehabilitation centres and are being integrated into the community.
This intervention is led by case managers who are based in the rehabilitation
centres and in the community and who assist former and current IDUs—both
HIV-negative and positive—to access services. Preventive services such as needle
and syringe distribution programmes, safer sex counselling and condoms, SYl
screening and treatment, and eventually OST will be available through the same
centres that provide HIV care, treatment and support services.
83
SCALING UP TH F. CON I • x (. ( \i o|
< A R F I OR PLOP Lit LIVING '.'Illi II 1\
|
2.
The CoC offers excellent opportunities to reduce stigma and discrimination towards PLHIV and
improve their access to services—especially among those at greatest risk of infection. The CoC
must push beyond traditional approaches to care provision and improve access among highly
vulnerable populations in the region that include sex workers, IDUs, MSM, prisoners, and
migrants. Children, youth and the poor also face barriers in accessing HIV services that they
need. Localities and countries in the region need to identify strategies that enable most-at-risk
populations to access the services they need in order to improve coverage.
The two examples below illustrate barriers that prevent most-at-risk groups from using
services:
a
a
In City X, police stand outside of the IDU drop-in centre that provides clean needles
and syringes, drug-use counselling, HIV counselling and testing, referrals to HIV
care services, and general health care. Many IDUs do not use the centre because
they fear being arrested or noticed by the security forces.
In City Y, health-care workers at an HIV clinic have not been trained to provide
non-judgmental care to MSM. MSM refuse to utilize the clinic because of the
discrimination they experience there.
The price of isolating most-at-risk groups
The 2004 APN+ AIDS Discrimination in Asia research project surveyed more than
750 HIV-positive people in four countries. The study showed that HIV-related
stigma and discrimination continue to be major issues for people living with and
affected by HIV. Stigma and discrimination towards PLHIV was found to be related
not only to real or perceived HIV-positive status, but was often heightened when
the client was identified as a member of a population that practices high-risk
behaviours including commercial sex workers, injecting drug users and men
who have sex with men. Many governments in South-East Asia—where these,
behaviours are often regarded as "social evils"—criminalize these behaviours and
the people who practice them. The study found’ that labelling members of these
groups as immoral or as criminals severely diminishes their access to prevention
and care services and creates barriers to an effective response to the epidemic.
CoC planners should consider the following strategies to reduce barriers to services among
at-risk populations:
a
■
a
a
84
Sensitize local leaders to the needs of at-risk populations and the harmful effects
of harassment, exclusion and arrest of these groups. Discuss barriers to care in
CoC-CC meetings and other forums.
Include PLHIV and members of at-risk populations as meaningful partners in CoC
planning and implementation activities.
Train health-care workers to provide care in a non-judgmental manner and
sensitize them to issues regarding sex workers, MSM and IDUs.
Sensitize officials at prisons and rehabilitation centres regarding HIV-related issues
and advocate for them to join the CoC. Establish referral linkages between these
a
M
a
a
■
3.
closed settings and the community-based settings where clients will require
services following their release.
Integrate services and information to address multiple risk behaviours during
encounters with clients (e.g. promote both safer sex and harm reduction among
IDUs).
Support or conduct outreach activities among marginalized populations in order to
develop trusting relationships between service providers and clients and to assure
clients that CoC services are friendly, non-judgmental and respectful of their rights.
Provide key services in locations where at-risk populations live and practice
high-risk behaviours. Drop-in centres, community clinics and other community
based services represent important CoC services for those clients who are not able
or willing to seek care within the heath and social welfare systems.
Establish formal links and efficient referral processes between services for the
general public and services that focus on at-risk populations.
Monitor access to and experience with the CoC among PLHIV and those vulnerable
to HIV in order to ensure that services respond to client needs, local circumstances,
and the evolution of the epidemic.
Establishing family-centred care
When one member of a family has HIV it affects the entire family. Care can be particularly
complex when both parents and children have HIV. Services for children and adults often are
not provided in the same facility or location, posing challenges in terms of transport costs,
uncoordinated care and mixed messages from different providers. In some cases CHBC and
OVC services are offered by different providers and are not coordinated, creating confusion for
the household.
Family-centred care
Family-centred care involves providing HIV-infected individuals and their family
members with the care, treatment, support and preventive services that they
require. Services provided under the CoC can be adapted and structured to
improve the access of families to services. Family-centred care links these services
through several key strategies:
•
Establishing integrated family clinics
•
Using case managers to assess family needs and connect them with the
services they require
•
Providing follow-up care in the community through CHBC services
The effect of HIV on families is particularly apparent with maternal and child health-care services.
Prevention of mother-to-child transmission (PMTCT) services are generally provided by maternal
and child health (MCH) and obstetric and gynaecology departments—it is thus essential that
effective referral and planning links exist between these two services. These departments
need to collaborate to provide services during antenatal care, labour and delivery, and the
postpartum period. Many mothers and newborns with HIV are lost to follow-up because hospital
departments do not coordinate effectively or because referral mechanisms between hospitals
85
St.MING UP THE CONTINUUM (>l <
I :> i; I' i- o I- IF t I V ING Will! II I V
and health centres are not well established. The hospital director and/or CoC-CC Coordinator
often play key roles in making the links between these two services work effectively.
The HIV epidemics in most countries of the region are either low prevalence or concentrated.
It is inefficient in most hospitals for the paediatric department to develop expertise in
paediatric HIV when its burden is so low. Care for children with HIV is generally provided
most efficiently through the CCS. General paediatricians can be rotated into the CCS for
Family Clinic Days on a weekly basis. This maximizes resources and ensures that all family
members receive care (at the same site and on the same day) from CCS staff members who
have received extensive training in HIV care.
CoC planners can take the following steps to promote family-centred care:
■
Organize family days at the CCS: train the hospital paediatrician(s) to provide HIV
care and invite them to work with the adult clinician on family days. Both clinicians
can provide care together for all those in the family living with HIV.
Link files: develop a system to link files of family members so that they can be
■
i
■
1
■
updated at the same time and cross-referenced.
Appoint case managers: train volunteers or staff to assess needs of families
registered at the CCS and link them with health, social, economic and spiritual
support services.These services may include PMTCT, family planning, psychosocial
support, food security education and support, legal support, child protection,
education support and household economic strengthening.
Train CHBC teams to provide family-centred care: use training and ongoing
supervision to support CHBC services to address the needs of the entire family.
Ensure representation of MCH, CT and other providers on the CoC-CC: build strong
relationships between CT, PMTCT and care services, ensuring that representatives
of each service are on the CoC-CC. The committee should focus on developing
referral systems between each service, thereby enabling adults with HIV and their
children to gain better access to HIV care and prevention services.
Family-centred care in Viet Nam
Family-centred care (FCC) in some districts in Viet Nam includes "Family Clinic
Days" during which outpatient clinic staff provides care for the entire family. On
these days, health-care workers assess HIV-positive caregivers and their children
together. Family members then visit the Adherence Counsellor and finally the FCC
Coordinator, who serves as the case manager for the family. The FCC Coordinator
assesses the needs of the family, helps them to develop a family care plan, and
works to link them to needed services. The Coordinator works closely with and
supervises CHBC teams while also managing community play groups, schooling
access and referral relationships with key social support services.
The CHBC teams provide follow-up support to meet the needs of the family.
Depending on the CoC site, they may provide support in the areas of income
generation, food provision, access to schooling, housing, and managing the
impacts of stigma and discrimination—all issues that are often among the most
pressing needs of HIV-affected families.
86
I
Illi
4.
i \ R I- ! <) R I’ EO I' I h i I \ I \
W I I tl HIV
Expanding services outside of the health sector
PLHIV and theirfamilies have physical, emotional, social, legal, economic and spiritual needs.
Given that the lives of many people with HIV in the region are further complicated by drug
use, imprisonment or other difficulties,
linkages with services that address
both medical and non-medical needs
are crucial.
Poverty in particular is a major factor
for many PLHIV who are enrolled in
CoC services. Poverty impacts upon
their access to nutritious foods as well
as the ability of PLHIV to travel to
clinic appointments, keep children in
school, and find stable, safe housing.
Many PLHIV therefore need assistance
locating employment.
-s
•
\
J
■■
■
-
PLHIV groups partnering with local agricultural experts
in Pingxiang, China
Comprehensive CoC: increased involvement of sectors outside health
At many CoC sites—especially during the initial stages of implementation—CoC
managers may emphasize and prioritize medical services such as 01 management,
ART, and PMTCT. While there are good reasons for assigning high importance to
these services, they do not fully meet the needs of PLHIV and their families.
Cambodia stands out as a country where the government has done an excellent
job of creating a formal role for government social services in the CoC planning
process by mandating their involvement at the local level. The Ministries of Social
Affairs, Labour, Veterans and Youth, and Women's Affairs all participate in the CoC.
This strategy has been facilitated through the decision by NCHADS to work with
the National AIDS Authority—an inter-ministerial body that creates a forum for all
relevant ministries to participate in HIV programming and coordination.
In Pingxiang, China, CoC stakeholders are trying to broaden their effort to address
the non-medical needs of their clients, but there will be no simple solution. Due to
high levels of stigma, PLHIV feel that referrals to organizations outside of the health
sector must protect their confidentiality and ensure that the organization does
not infer their HIV status. Government agencies such as the Department of Social
Affairs and the Youth League would like to provide assistance to PLHIV but they
don't know who their prospective clients are—and with PLHIV unwilling to disclose
their status, the problem has remained unsolved. CoC planners are discussing
how to best confront this dilemma. The solution that is eventually reached will
probably be a combination of identifying and publicizing the assistance that is
available and then encouraging PLHIV clients to apply for it while ensuring that
their confidentiality will be protected by the organizations that provide them with
assistance.
87
.SCALING Ul> THE t ON II NV UM Ol CARE I’OR I’ HH'I I-
II i \
Once the^zore service delivery mechanisms of the CoC are in place—including the CCS and
CHBC—CoC coordinators and planners can explore building linkages with services that
address unmet medical needs (e.g. mental health) and non-medical needs of PLHIV. The
following steps can be taken to widen the CoC network to include social welfare and other
needed services:
a
5.
Map available services: the CoC-CC can rapidly map services that exist in the area
served by the CoC site.This task includes determining where and how services such
as loans, nutrition support, aid for children to attend school, spiritual counselling,
and mental health can be accessed by PLHIV.
Invite social welfare services to participate in the CoC: CoC planners can meet with
colleagues from services that can assist PLHIV and negotiate with them regarding
their participation in the CoC network. The CoC-CC can offer these organizations
seats on the CoC-CC and ask them to become a part of the CoC referral system.
Establishing a national CoC framework
The development of a national CoC framework to guide the development and expansion of
the CoC throughout the country should be considered by any government that has not yet
done so. The development of a national CoC framework allows governments to determine
systematically where HIV care and prevention services need to be implemented and then
plan strategically to do so. See Section 5.2 for information on how to establish a national
framework.
6.
Role of the Continuum of Care in achieving universal access
The momentum of the global response to HIV has steadily increased following the 2003
UNGASS on HIV/AIDS. Global goals for treatment were set for the first time under the WHO/
UNAIDS 3 by 5 Initiative, resulting in major increases in the number of PLHIV on treatment.
As of December 2006, more than two million PLHIV were receiving treatment in low and
middle-income countries, an increase of 54% over the previous year.
Despite these achievements, progress towards the Millennium Development Goal on HIV/
AIDS—to halt and reverse the spread of the epidemic by 2015—is lagging. In order to reach
this goal, UNAIDS and WHO have called on governments to make plans and set targets
towards universal access to HIV prevention, care, treatment and support by 2010.
Key statistics make it clear that much more needs to be done to achieve universal access
in the Asia-Pacific Region. Less than 10% of those living with HIV in the region know their
status; only 19% of those who need treatment receive it; and, less than 5% of IDUs have
access to harm reduction services.36 HIV services urgently need to be scaled up while barriers
to accessing these services need to be identified and reduced. It is equally important that
the health systems that provide these services must be strengthened. Stronger planning
mechanisms, efficient use of finances and more effective development of human resources
need to be realized if universal access is to be achieved.
88
i (> R I' I (l P i I- I I X I N (. XV 1 I fi II 1 V
The continuum of care is ultimately a health system intervention that seeks to provide a
package of coordinated high-quality services that PLHIV and families can access with ease.
Countries that have implemented the continuum of care approach nationally—such as
Cambodia and Thailand—have made comparatively strong progress towards universal
access targets, particularly in the areas of care and treatment. The continuum of care
approach is a highly effective strategy for scaling up sustainable HIV services. The time for
countries to implement the continuum of care is now.
Action points: beyond basic care and treatment
•
Integrate prevention services into the CoC.
•
Improve access to HIV services among those most at risk.
•
Establish a family-centred approach to care and treatment.
•
Build linkages with services that address unmet non-medical needs of
PLHIV.
•
Establish a national CoC framework.
•
Make universal access a reality.
:on DC, Office of i
ICEE
heai
iiversal acc<
ress reports
SSI
<>
*
36
HIV/AIDS in the South-East Asia region: March 200/. Delhi, WHO South-East Asia Regional Office. 2007.
89
■ISO
wav®
B11
■n
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challenge ahead. Editor Narain J. New Delhi, Sage Publications India PcT Ltd. 2004.
Page 312-322.
44.
The Millennium Development Goals Report 2006. New York, United Nations, 2006.
45.
The president's emergency plan for AIDS relief: U.S. five-year global HIV/AIDS strategy.
Washington DC, Office of the United States Global AIDS Coordinator, 2004.
46.
Training Toolkit: HIV Care and Antiretroviral Treatment Recording and Reporting System.
New Delhi, WHO Regional Office for South-East Asia, 2006.
47.
Tran H et al. Preliminary outcomes and impacts of HIV care and treatment interventions in
Viet Nam Ho Chi Minh City, FHI/Viet Nam, FHI/Asia Pacific Regional Office, University
Training Centre for Health Professionals/ Ho Chi Minh City, USAID/Viet Nam, 2006.
48.
Treating 3 million by 2005: making it happen: the WHO strategy. Paris, WHO, 2003.
49.
United Nations General Assembly, 60th Session Resolution 20/62. Political Declaration on
HIV/AIDS. United Nations, 2006.
50.
51.
United Nations General Assembly, Special Session on HIV/AIDS. Declaration ofCommitment
on HIV/AIDS. United Nations, 2001.
"Valued Voices" GIPA Toolkit: A manual for the greater involvement of people living with
HIV/AIDS. APN+, APSACO, 2005.
52.
WHO, UNAIDS, UNICEF. Towards universal access:scaling up priority HIV/AIDS interventions
in the health sector: progress report, April 2007. Geneva, WHO, 2007.
92
V
SSARY
ANNEX 1:
LVICE DESCRIPTIO
CoC service descriptions
HIV counselling and testing (CT) - HIV counselling and testing is often the client's entry point
into the CoC—others include Provider Initiated Testing and Counselling (PITC) and diagnostic
testing linked toTB and inpatient services. A positive experience for clients in this service can
positively influence their continued use of other CoC services. Comprehensive pre and post-test
counselling provide important opportunities for clients to learn about—and be referred
to—other services within the CoC. CT services may be integrated into existing care, treatment
and prevention services or they may be located in free-standing clinics or community-based
organizations with strong referral links to HIV care and treatment services.
Opportunistic infections: prevention, treatment and management - Prevention, early
diagnosis and treatment of opportunistic infections are essential to optimal HIV care. Within
the CoC framework, the outpatient clinic (OPC) or comprehensive care site (CCS) provide
services for the prevention, treatment, and management of Ols. Serving as a critical referral
hub of the CoC, the OPC/CCS is linked to (or offers) services that include CT, PMTCT, ART,
TB diagnosis and treatment, drug substitution therapy and hepatitis B vaccinations, family
planning, STI services, inpatient care, psychosocial support and CHBC. Trained PLHIV serve as
counsellors in many CoC clinical settings, a role critical to the success of the CoC.
Tuberculosis prevention, diagnosis, and treatment - Early diagnosis and treatment of TB
among PLHIV improves an individual's immune function and cures him of active TB, thus
reducing the risk ofTB transmission to others in the population.TB prevention and treatment
services should therefore be strongly linked with the CT clinic, HIV clinical care and CHBC
services within the CoC framework. The CoC framework facilitates and strengthens these
linkages. Clinical management of PLHIV who are infected with TB involves multiple health
care providers and is best provided through a coordinated team. In some instances referral
to higher level services is required. Preventing PLHIV from being infected with TB during
their time in health facilities is of critical importance.
Sexually transmitted infections (STIs): treatment and management - PLHIV should have
access to appropriate services to diagnose and treat STIs, reduce risk of complications
and minimize HIV transmission to sexual partners. Sex workers, MSM and IDU have special
service needs for STI prevention and detection. The CoC can help to ensure that these needs
are met; services should include peer outreach and condom promotion.
Palliative care- Palliative care includes reducing suffering of PLHIV and families by assessing
and treating pain and other symptoms while providing psychosocial support and spiritual
care to improve quality of life. Palliative care complements treatment that addresses
opportunistic infections and suppresses HIV through ART. Palliative care is offered from
diagnosis to death and through bereavement and is provided through both home-based
and facility-based services.
93
ON I'l XI-I'M Ol
CARE FOR PEOPLE LIVING Willi HIV i
Antiretroviral therapy (ART) - ART availability and adherence counselling are essential
components of the CoC. For PLHIV, ART represents not only a key medical service, but
also hope for living a normal life. ART helps the client's immune system regain strength,
resulting in a reduction of Ols, improved quality of life, and reduced HIV-related morbidity
and mortality. ART consists not only of the provision of ARV drugs, but also includes the
medical and social support that helps the client manage side effects and adhere to the
therapy Adherence can be strengthened when multiple service providers provide mutually
reinforcing messages. CoCs in Asia have utilized CCS, home-based care and PLHIV support
groups to provide adherence support counselling.
Prevention activities for those most at risk - While CoC services may focus primarily on HIV
care treatment and support, it is vital that they are linked effectively to prevention services
for at-risk groups that include IDUs, sex workers, MSM, migrants and youth. Some prevention
services are provided directly through CCSs while others are accessed through referral links.
Essential tools to support HIV prevention among these groups include (I) condom and
lubricant distribution and counselling for partner reduction; (ii) harm reduction counselling,
needles and syringe exchange or distribution; (iii) linkages to detoxification and rehabilitation
relapse counselling and treatment (e.g. opioid substitution therapy or OST) services; and, (iv)
peer outreach and strategic behaviour communication. STI treatment and diagnostic services
are also important HIV prevention measures and offer another opportunity to contact at-risk
groups and conduct preventive activities. Referrals of members of at-risk groups to CT
promotes early identification of HIV status and enrolment in the CoC.
HIV prevention and reproductive health services for PLHIV and discordant partners-TheCoC
framework can be effectively used to reinforce HIV prevention among PLHIV and discordant
partners through counselling regarding how to prevent transmission. This service should
also include information regarding how to minimize the risk of HIV transmission to partners
and infants. The CoC ensures that these services are present and creates effective Im s
between HIV services and family planning and reproductive health services.
Prevention ofmaternal-to-child transmission (PMTCT) - PMTCT services should be offered in
ANC settings to all women-regardless of their risk profiles—and included in the CoC. The
CoC ensures that PMTCT services are integrated into routine MCH and antenatal care services
to maximize coverage. Within the CoC, important referral links are established between
PMTCT services, counselling and testing services, and the HIV outpatient clinic (OP^J^e
CoC also links mother-infant pairs that are referred from the PMTCT programme with CHBC
teams to support correct infant feeding procedures, paediatric and adult cotnmoxazole
prophylaxis, adherence to ART (when prescribed), and ongoing support for HIV-positive
mothers including access to early HIV testing for infants.
PLHIV support groups - These are self-led groups of PLHIV that meet regularly to provide
support to group members and other PLHIV. In addition to providing services and
participating in the management of the CoC, PLHIV support groups play an important
activist role through their participation in activities such as determining who is eligible to
start ART or advocating for clients who do not receive the services they need.
Nutritional and daily living support - Good nutrition is an important strategy for improving
quality of life for PLHIV. Within the CoC, community health workers and caretakers may otter
nutrition counselling and support through education, food supplementation and nutritional
94
*
S< Al IXG VI* I HF CON I IM I'M Ol < AKE I OR 1’EOl‘l F. I.1V1NG h I i It III'.
monitoring. PLHIV and their families may also require support for basic needs including
housing, food, transportation, and small grants to help them start a small business and earn
a living. Many of these services may be available in a given community through government
and NGO providers. The CoC programme ensures that providers are aware of all basic needs
services and know how to refer clients to them. Inviting managers of key services to sit on
the CoC-CC and otherwise be involved in the CoC promotes better referral relationships and
increased social support for poor PLHIV clients.
Psychosocial support - Psychosocial support aims to assist PLHIV and their families or
partners to cope with psychological and social challenges and maintain their hope to lead
fruitful lives as productive, valued members of the community. The CoC advocates for the
development of psychosocial support services and ensures that they are linked to other key
CoC services. Psychosocial support may include the provision of individual, family and group
counselling, specialized mental health services and peer support.
Orphans and vulnerable children (OVC): care and support - Children suffer multiple problems
when their parents or caregivers have HIV—they experience the illness and possible loss of
a parent; rejection from the community and peers; reduced access to health care, education
and food; and increased vulnerability to violence and abuse. Meeting the needs of OVCs
requires a response from government departments of health, social welfare, women's affairs,
and education departments and additional support from NGOs and other organizations that
work in the social sector. CoC implementers encourage support from these organizations by
inviting them to participate in the CoC-CC.The CCS also supports OVC by providing familycentred care—that is, services for adults and children with HIV and support services for
family members.
a
95
(
CONTINUUM OF CARE FOR PEOPLE LIVING WITH HIV
IMPLEMENTATION CHECKLIST
Scaling Up the Continuum of Care
for People Living with HIV in
Asia and the Pacific:
Implementation Checklist
A companion document to:
Scaling up the Continuum of Care
for People Living with HIV
in Asia and the Pacific
A Toolkit for Implementors
TABLE OF CONTENTS
1.
2.
3.
Purpose of the checklist
What is the Continuum of Care?
Establishing the CoC at the local level
3.1 Building Block 1: Get started
3.2 Building Block 2: Develop the network
3.3 Building Block 3: Establish services
3.4 Building Block 4: Involve PLHIV
3.5 Building Block 5: Create acceptance
99
100
102
103
104
106
108
109
110
3.6 Building Block 6: Build capacity
4.
5.
6.
98
Developing and implementing a national CoC framework
Using monitoring and evaluation to improve the CoC
Five priority areas for future CoC implementation
111
112
112
I II I
IM CM
< AKH Hill I’K>l‘l I
\V IT 11
Purpose of the checklist
1.
The Continuum of Care (CoC) is increasingly recognized as a promising strategy for achieving
universal access. The document titled Scaling up the Continuum of Care for People Living with HIV
in Asia and the Pacific: A Toolkit for Implementers is a comprehensive review of the CoC strategy,
including its definition, origins, case studies that describe its development, and tools that help
design and implement it. The Toolkit represents the most thorough programming guidance
for the CoC to date.
This companion checklist is intended for use by planners and implementors to help organize
and track the process of establishing a CoC. Each CoC is unique. Its design and function
are influenced by local factors including the nature of the HIV epidemic, the administrative
infrastructure, socio-cultural issues, available resources and local priorities. The actions
outlined in this document are not intended to be prescriptive but have been found to
contribute to the success of existing CoCs. These actions should be viewed as a menu of
options to be considered and adapted by leaders, planners and managers as they develop
new CoCs or strengthen existing CoCs in their local settings.
The checklist is laid out in the following sections:
■
»
H
Introduction that defines the CoC
Checklists for:
Establishing the six building blocks of a local CoC
Developing a national CoC framework
Monitoring and evaluating the CoC
An outline of five priority areas for future CoC development
♦
99
W I I 11 11 I v
SC A 1.1 Nt; fl‘ THE CONTINUUM OF CAKE FOR
What is the Continuum of Care?
2.
People living with HIV (PLHIV) and their families have emotional, social, physical and
spiritual needs that change over time. They often must cope with the effects of stigma
and discrimination, poverty, loss, neglect and abandonment. The purpose of the CoC is to
address HIV as a chronic disease and to develop systems that provide humane, effective,
high-quality comprehensive and continuous care to PLHIV and their families.
The CoC has two defining characteristics as follows:
The CoC is a network that links, coordinates and consolidates care, treatment
and support services for PLHIV. These services are provided in their homes, in the
1.
2.
communities where they live, and in the health facilities that serve them.
The CoC is also the group of services that together provide comprehensive support
to PLHIV and their families. Most of the CoCs implemented to date were initially
developed to provide care, treatment or support services to PLHIV. Once these
services were established, the CoCs began to incorporate prevention activities.
Both of these features of the CoC are illustrated in Figure 1 .The circles represent the^different
services—clustered by location of delivery-that are included in many CoCs. The arrows
represent the referral network that binds the services together in the CoC.
Figure 1: Continuum of Care framework
THE CONTINUUM OF CARE
Primary Health Care
Secondary
Health Care
Community Care
X
f
• NGO/CBOs
X
\
. Faith-based orgs
\ -Volunteers I
1>
aI
I
The entry point
-
aSk A
■ ■ i
:-
rW Z
‘II /
and specialised
care facilities
\x
PLHIV
Tertiary Health
Care
Peer
support
\
Family
PLHIV
. HBC teams
\
<
7
Home-based
Care
I
. A. (..pimilttan 1 n: ''' T'-’- 'S’1 '
-it’d
frn>- .mill-."! f
:
.-•■.A'-'l
Ihe CoC is a complete set of linked cate, treatment and support services provided at all levels from health facility
(hospital/health centre) to community and home by government, NGOs, CBOs, FBOs. PLHIV and family members.
source: W (.om;
JP. Cheb C ano van PfM0 W
appioach. Mew Delhi. WHO Regional Office for South-Easi Asia, 200 -
100
unC rmplemenrmc, t ^5 caK progr^:step by step
i ii r <
I I M I M "I
CoC networks generally include most or all of the following services:
•
HIV counselling and testing (CT)
•
Opportunistic infections (Ol): prevention and treatment
•
Tuberculosis (TB) detection, prevention and treatment
•
Sexually transmitted infections (STI): diagnosis and treatment
•
Palliative care: treatment of pain and other symptoms, psychosocial and spiritual
support
•
Antiretroviral therapy (ART) and adherence: counselling and support
•
Prevention services for those most-at-risk
•
HIV prevention and reproductive health services for PLHIV and discordant
couples
•
PMTCT and health services for HIV-positive mothers and infants
•
PLHIV support groups
•
Nutritional and daily living support
•
Psychosocial support: support groups and counselling
•
Orphans and vulnerable children (OVC): care, support and protection
The CoC framework is based on a set of core principles that can be summarized as follows:
The CoC is needs-based and client-focused.
The CoC has a rights-based orientation.
The CoC promotes meaningful involvement of PLHIV and other stakeholders.
The CoC links a diverse set of services across different service delivery sites.
The CoC is locally defined.
I
101
C.AHNG Ul‘ THE CON IIXC UM <> I ( ARE FOR PE-Ofll- 1.1 VIM. Willi II ■ \
3.
Establishing the CoC at the local level
While each CoC is unique, there are six common building blocks that each CoC uses to
build strong systems and services. They can be easily remembered as listed in the box on
the below.
Figure 2 illustrates the six building blocks of the CoC.
The Building Blocks
4.
Involve PLHIV
2. ’ Develop the network
5.
Create acceptance
3.
6.
Build capacity
1.
■
Get started
Establish services
..
.
■■
:
■■
■
<
Figure 2: The six CoC building blocks
Build aopacity
Create
acceptance
Involve PLHIV
6
5
fa a
4
I
^tablish services
3
a
i
I
Develop the network
I
2
Get started
i
1
■ •
i
102
•y
I
I
■
IP I H I- CONI I SLUM '» l
3.1
%R 1
> K !• K» P I F 1,1 V J N(, W I 1 II HIX
Building Block 1: Get started
Main activities:
■
Create awareness and commitment for the CoC
B
Assess care needs
Develop a CoC workplan
Conduct training and workshops for stakeholders
B
B
Create awareness and commitment for the CoC
H
M
■
B
Identify and gain agreement from a recognized leader to be the head of the CoC.
Hold meetings with stakeholders to discuss why a CoC is needed.
Take stakeholders on study tours to see a CoC in action.
Invite people who have developed CoCs in other areas to meet with stakeholders.
Assess care needs
■
M
■
■
Interview PLHIV and families regarding their needs.
Conduct a facility assessment and interview health care workers at the hospital and
other sites.
Interview NGO managers involved in HIV work.
Review existing referral system and coordination mechanisms.
Review HIV prevalence, projections and case reporting.
Present the findings and recommendations to stakeholders.
Develop a CoC workplan
■
B
Define what needs to be done, when and by whom and document it in the form of
a workplan.
List donors and local organizations that will support the CoC.
B
Start with actions that are achievable and lead to early, measurable results.
Figure 3: Example of an annual CoC workplan
Activity
Who
responsible
Timeframe
01
Q2
03
04
Cost
Total
Target/expected
output
Source: Family I lealih International
Conduct trainings and workshops for stakeholders
*
Plan and implement workshops that provide information on HIV and the CoC, reduce
stigma and discrimination, and build broad consensus and support for the CoC.
Workshop topics may include the following: (i) overview of HIV care and treatment,
(ii) introduction to the CoC, and (iii) HIV and standard precautions.
103
lllh CONTINUUM OF (.ARF FUR I’EOPI.E I.IVING Wilf! HIV
Baildinq Block 2: Develop the network
3.2
Main activities:
«
■
■
■
Assign roles for CoC coordination
Create and sustain a CoC Coordination Committee
Link PLHIV to the services they need
Identify and remove barriers to care
Assign roles for CoC coordination
■
Identify a local CoC leader to:
organize the CoC Coordination Committee (CoC-CC)
take responsibility for overall programmatic and budgetary decisions
negotiate with leaders and officials to improve support for the local CoC
Identify a local CoC Manager to:
manage implementation of the overall CoC workplan
play a lead role in the organization and establishment of CoC services
promote the involvement of PLHIV and families in all aspects of the CoC
arrange for regular CoC Coordination Committee meetings
meet with key partners on a routine basis to solve problems
ensure the development of referral systems and tools to support CoC
systems
Create and sustain a CoC coordination committee
■
■
Gain support from local health leaders to establish the CoC-CC.
Determine how the CoC-CC will function. Will it be integrated into an existing HIV
■
committee? If so, how?
Identify key people who should be on the CoC-CC and invite them to the first
■
meeting.
At the first meeting, review the HIV needs, services and gaps. Discuss how to improve
referrals and reduce barriers to service. Elect a chair, secretary and other officers.
Following the first meeting, the local government can officially approve the
■
■
committee including its purpose and membership.
Maintain flexibility to add new members who can help improve services for PLHIV.
Notify members well before each meeting and encourage attendance and
■
participation.
104
u i i ii ii 1 v i
S(.AllXu I I1 Illi- t.ONTI Xi; UM Ol (.ARE i('l<
Link^LHIVAQjM
Develop or strengthen linkages between the services for PLHIV to build a simple
and effective referral network.
Negotiate the use of standard referral procedures.
Develop tools to facilitate referrals, such as:
a client-held service record booklet
a list of all CoC services (including service descriptions, locations and times)
a case-management approach to care
Identify and remove barriers to care
■
Assess and plan for reducing hidden barriers to care (e.g. socio-cultural, psychological
and economic) through contact with PLHIV, service providers and local leaders.
Carefully consider and address the effect of user fees on service utilization.
■
Figure 4: Active referral within the CoC
THE CONTINUUM OF CARE
f"
>
Social and legal support
services
District hospitals,
HIV clinics, specialistsand <
specialized care facilities
X.
<
>
Mi
Health centers,
dispensaries,
traditional care
Care seeking/providing
Peer support and
voluntary services
-
4
4
■
>
►
► Active referral
Homes,
community services,
hospices
HIV voluntary counseling
and testing (VCT)
J
ACTIVE REFERRAL NETWORK
Source: van Praag FV. FHI, 2001.
105
SCAI.ISG II' IHb. CONTINUUM OF CARE TOR. I* I-O I’I. F IIVING WIIH II 1 V |
Bwlding Block 3: Establish services
3.3
Main activities:
■
Develop comprehensive care sites
Develop and link community and home-based care services
■
Enhance the role of NGOs, CBOs and FBOs
Integrate new services
Develop comprehensive care sites (CCS)
M
Decide whether the CCS should be hospital-based or stand-alone.
Establish services at the CCS:
Define basic package of services to be provided.
Identify services and providers that will be linked by referral to the CCS.
Consider other needed services and plan for future expansion.
■
Plan for physical facilities, including space for:
a designated area for outpatient care
a private place for providing adherence, care and supportive counselling
a meeting venue for PLHIV groups, the CoC-CC and others
a work area for the CHBC team if they are based at the CCS
Figure 5: Integrated hospital-based CCS and linkages in Viet Nam
LOCAL CONTINUUM OF CARE NETWORK
PROVINCIAL COC COORDINATION COMMITTEE
Provincial Hospitals
OB/GYN Hospital
TB/Lung diseases
Hospital
Provincial level
DISTRICT COC COORDINATION COMMITTEE
Specialized Prevention
Services
PLHA
Support Group
District/Commune Level
Source: Family Health International
106
VCT
PLHA&
Family
Home Care Teams
Social
Services
(egOVC)
(All
(>)
I AHI
! OK PEOI’I b
i I It ll!\
Plan for personnel:
Determine staffing requirements.
Identify the training requirements for each staff position.
Make a plan for mentoring and supportive supervision.
Organize interdisciplinary teams and nurture teamwork.
Sensitize all staff to issues regarding HIV and at-risk populations.
a
Develop management routines and relationships:
Establish management meeting schedule.
Consider including routine meetings in which all CCS staff (including CHBC teams)
discuss priority cases.
If CoC is hospital-based, link the CCS to all relevant hospital services with the support
of the administration.
Develop and link community and home-based care services
■
Conduct an assessment of CHBC services to answer the following questions:
To what extent is CHBC in place and how well is it linked to health facilities?
What types of training have CHBC service providers received?
Are CHBC teams supplied with basic medicines to treat pain and other symptoms?
Is it possible to base CHBC services at the CCS?
How well do CHBC services address stigma and discrimination? Can they do more?
Do CHBC teams need training to provide care to the whole family?
■
Improve CHBC services through the following actions:
Base CHBC teams at the CCS so they become part of the team.
Ensure that PLHIV lead or participate in the provision of CHBC services.
Train CHBC teams to address the needs of both adults and children.
Train, supply, supervise and support CHBC providers.
Reinforce the voluntary and confidential nature of CHBC services.
n
Link other community-based services such as hospices and spiritual care to the CCS.
Enhance the role ofNGOs, CBOs and FBOs
n
■
■
B
Ensure that the CoC-CC includes non-governmental organizations (NGOs), community
based organizations (CBOs) and faith-based organizations (FBOs).
Encourage local and international NGOs to provide services, build the capacity of local
partners and mobilize resources and support for the CoC.
Facilitate CBOs to provide support for households made vulnerable due to HIV, intervene
when PLHIV and families are being discriminated against and provide support and
companionship when clients feel isolated or rejected by their community.
Work with FBOs to provide a broad range of services, including spiritual counselling,
hospice, OVC care, prevention education and material support.
Integrate new services
*
B
B
Plan for and introduce new services within the CoC to address identified gaps.
Ensure that new services are linked through referral protocols.
Publicize new services to CoC providers, clients and their communities.
107
SCAIJNG ur mu cuNnNCi'.M UI . MU- | <H< noru i.iving " i i u hiv |
Building Block 4: Involve PLHjV
3.4
Main activities:
■
■
Promote PLHIV as leaders in the CoC
Build PLHIV capacity to provide services
■
■
Empower PLHIV groups
Include PLHIV in CoC monitoring activities
Promote PLHIV as leaders in the CoC
Make PLHIV meaningful partners in the process of CoC development.
■
■
Support PLHIV groups through capacity building and funding.
Puild PLHIV capacity to provide services
Work with PLHIV as partners and co-planners of CoC serv‘ceSi^I^/S^e,^’
Develop a policy to involve PLHIV as staff and volunteers in all HIV services.
■
■
■
Provide training and support so that PLHIV learn new skills.
Pay PLHIV fairly for their work.
Support PLHIV to develop services that are led and managed by PLHIV.
■
■
Empower PLHIV groups
■
■
■
Identify existing PLHIV groups and invite them to join the CoC-CC.
Ensure that PLHIV group leaders are fully involved in the core CoC p annmc| eanr
Support PLHIV groups to develop group action plans and to secure
Provide meeting space for PLHIV groups at the CCS or other convenient site.
Promote cross-learning
learning with other PLHIV groups and networks.
Include PLHIV in CoC monitoring activities
■
Include PLHIV as part of the team that determines how to monitor the CoC and
■
■
what the indicators of success will be.
invite PLHIV to assess services with the team.
Have PLHIV work with the team to analyze findings and provide recommendations
for improvements.
108
II1 I I! I CONTINUUM di < AUK 1<>K I’l-.Ol’Il LIVING Willi II I V
Building Block 5: Create acceptance
3.5
Main activities:
»
a
n
Develop client-friendly services
Involve families
Mobilize the community
Develop client-friendly services
■
■
Build in service features that promote privacy, confidentiality and trust in CoC
services.
Adopt strategies aimed at making services more client-friendly, including:
involving PLHIV
provider training
individual case management
Involve families
■
■
■
Build a role for clients'families into the CoC services.
Assist CHBC teams to achieve family support for clients.
Organize "family days" at the CCS.
Mobilize the community
M
■
■
Meet with well-positioned local leaders in the public and private sectors to inform
them about the CoC and seek their support.
Conduct educational activities that target members of the general public in
neighbourhoods where PLHIV live.
Organize social mobilization activities during the CoC development process that
include:
community information meetings
door-to-door visits by local volunteers
community quizzes at events or holiday celebrations
talks by respected community members such as religious leaders, celebrities
and officials
109
I H K CON II N VUM Of < A «< »• I <■ k I’ i- O f i I- I I \ I N G WIT II HIV I
Building Block 6: Build capacity
3.6
IVlain activities:
Train CoC staff
Organize mentoring
Plan and provide supportive supervision
Strengthen community-level health facilities
■
■
■
■
Train CoC staff
Provide health care workers and other service staff with a comprehensive package
■
of training in HIV/AIDS care, including:
disease progression
treatment
infection control and occupational exposure
confidentiality
palliative care
Provide supplementary training for personnel who work in specialized areas such
■
■
■
■
as CT, ART, TB and HIV treatment and CHBC.
Base technical aspects of the training on service standards and protocols.
Include as much practical clinical training as is feasible in the local setting.
Provide psychological support and motivation to health providers.
■
■
Develop local or national specialists as qualified senior trainers.
Contract senior trainers to provide on-site mentoring to teams of CoC service
providers in new areas where the CoC is being introduced.
Organize mentoring
■
Arrange for on-site mentoring by clinical care professionals at the local CoC
work site.
Post providers for short durations in other CoCs.
Plan and provide supportive supervision
Develop and implement systems of supportive supervision that reinforce the
lessons of training activities and enhance morale.
Strengthen community-level health facilities
■
■
■
■
110
Include staff of community-level health facilities on the CoC CC.
Train staff of community-level health facilities in CoC services and referrals.
Sensitize staff to specific issues regarding PLHIV and at-risk populations.
Plan and budget as necessary to equip community-level health facilities.
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4.
. WITH II I V
Developing and implementing a national CoC framework
Main activities:
a
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Conduct a situation analysis
Mobilize national-level support
Prepare and fund a CoC workplan
Develop the care package and service standards
Assess and improve initial efforts
Conduct a situation analysis
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■
Map existing services and examine current infrastructure that provides HIV services.
Review data related to the epidemic and service utilization.
Talk with PLHIV and their families about their needs.
Mobilize national-level support
a
a
a
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Develop a compelling rationale for the construction of a national CoC framework.
Define what is to be done, by whom and when.
Consult with government agencies, PLHIV, NGOs, donors and other partners.
Identify and task a working group to prepare and document a national CoC
framework.
Prepare and fund the CoC work plan
■
H
Use a participatory planning process.
Cost the workplan and use it as a tool for fundraising.
Consider pooling donor funding to support the CoC.
Develop the care package and service standards
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Establish technical working groups (TWGs) to produce (i) detailed tools and
guidance for service improvement and (ii) guidelines and standard operating
procedures for new services.
Assign TWGs the task of developing training, mentoring and supervision packages
and plans for building human resource capacity in local CoCs.
Assess and improve initial efforts
M
Assess local CoCs and use findings to document or revise the national CoC
framework and guide the design and implementation of the CoC in new sites.
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SCALING Ul* IIIS CONTINUUM OF CAKE FOK P F O I-1 I-
Using monitoring and evaluation to improve the CoC
5.
Identify indicators that can be utilized to monitor the performance of the CoC
■
using routinely collected data.
Conduct periodic case reviews to assess quality of care provided through the CoC.
Organize participatory CoC program reviews on a periodic basis that use
standardized tools to assess the following:
the effectiveness of service linkages and success of referrals
the regularity of CoC-CC meetings
the perceptions of PLHIV, their family members and providers regarding
services
Design and conduct special studies as appropriate to evaluate the benefits that
clients receive from the CoC.
Five priority areas for future CoC implementation
6.
Integrate prevention services into the CoC
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Incorporate prevention activities within existing services (e.g. safer sex counselling
as part of treatment and support services).
Offer targeted, stand-alone prevention services for at-risk populations (e.g. in the
community, at prisons or rehabilitation centres).
Link preventive services to care, treatment and support interventions.
Improve access to HIV services among those most at risk.
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Sensitize local leaders to the needs of at-risk populations and the harmful effects
of harassment, exclusion and arrest of these groups.
Include members of at-risk populations as meaningful partners.
Train health care workers to provide care in a non-judgmental manner.
Integrate services and information to address multiple risk behaviours during
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■
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encounters with clients (e.g. promote both safer sex and harm reduction
among IDU).
Conduct outreach activities among marginalized populations.
Provide key services in locations where at-risk populations live.
Establish formal links and referral processes between services for the general
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public and those that focus on at-risk populations.
Invite prisons and rehabilitation centres to join the CoC and create referral links
with the community-based services needed by clients after their release.
Monitor access to and experience with the CoC among PLHIV and those most
at risk.
1 <• R I' I <> I' I I- 1 I V I N (. Willi
Establish family-centred care
a
a
a
a
a
Organize family days with paediatric and adult clinicians at the CCS.
Develop a system to link files of family members.
Appoint case managers to manage the care of the entire family.
Train CHBC teams to provide family-centred care.
Ensure representation of MCH, CT and other providers on the CoC-CC.
Expand services outside of the health sector
<
a
a
M
Map other services that exist in the area served by the CoC.
Meet with colleagues from departments and organizations that provide social
services.
Offer these groups seats on the CoC-CC and incorporate them within the referral
system.
Strive for universal access through the CoC approach
To achieve universal access, HIV services must be scaled-up while barriers to accessing these
services must be reduced. The health systems that provide these services must also be
strengthened. Stronger planning mechanisms, efficient use of finances and more effective
development of human resources must be realized if universal access is to be achieved.
The CoC is ultimately a health system intervention that seeks to provide a package of
coordinated high-quality services that PLHIV and families can access with ease. The CoC
approach is a highly effective strategy, for scaling-up sustainable HIV services. The time for
countries to implement the CoC is now.
IB
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V Family Health
JL A AJI International
Family Health International
Asia Pacific Regional Office
19th Floor, Tower 3
Sindhorn Building
130 Witthayu Road
Bangkok
Thailand
Tel: +66-2-263 2300
Fax: 4-66-2-263 21 14
www.fhi.org
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