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Setting up guidelines HIV Global Fund PFI |
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Setting up Guidelines for Providing Care and
Support Services Including Palliative Care
for People Living with HIV/AIDS
Population Foundation of India
B-28, Qutab Institutional Area, Tara Crescent,
New Delhi - 110 016
Tel.: 011- 42899770, Fax: 011- 42899795
Email: popfound@sify.com
Website: www.popfoud.org
HIV / AIDS
JUNE 2007
Population Foundation of India
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Guidelines for Care and Support Services
Setting up Guidelines for Providing Care and
Support Services Including Palliative Care
for People living with HIV/AIDS
JUNE 2007
Population Foundation of India
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Population Foundation of India
Setting up Guidelines for Providing Care and
Support Services Including Palliative Care
for People living with HIV/AIDS
Contact details:
Program Management Unit—The Global Fund Project
Population Foundation of India (PFI)
B-28, Qutab Institutional Area,
Tara Crescent, New Delhi-110016, India
Ph.: +914-11-42899795
Website: www.popfound.org
E-mail: mary@popfound.org
Design and Printed by :
Rachit Printer
A-2, Mannu Lal Building, Khanpur,
New Delhi-62, Mob. : 09891137531
E-mail : rachitprinter_2005@yahoo.co.in
Guidelines for Care and Support Services
COCNONTTEENTNT
Acknowledgements
Prelude
Context
Objectives
Study Area
Findings
1. Palliative Care: Definition
2. Package of services: Minimum and Additional
3. Cost of Care & Support Services
Conclusion
Annexture - I
Details of fixed assets and Capital Costs
Page
5
6
6
7
7
8
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Guidelines for Care and Support Services
AcknAcoknwowlleeddggmemntsents
Population Foundation of India gratefully acknowledges the immense support
received from all the care and support centres that were visited as a part of this study.
PFI would like to acknowledge each centre:
1. Accept Bangalore
2. Adarsh Hospital Imphal, Manipur
3. Emanuel Hospital Association New Delhi
4. Family Planning Association of India Madurai
5. Leprosy Patients Welfare Society Imphal East, Manipur
6. Pain and Palliative Care Centre Calicut Medical College, Kerala
7. Sahara Centre for Residential Care and Rehabilitation, New Delhi
8. Snehadaan, Bangalore
9. YRG CARE, Chennai
PFI is earnestly thankful to Dr. Bobby John (Executive Director, Center for Sustainable
Health and Development) and Dr. R R Gangakhedkar (National AIDS Research
Institute) for their inputs throughout the study and for their immense support during the
national dissemination. PFI sincerely conveys its appreciation to Dr. Po-Lin Chan,
WHO/India for her support throughout the study and for reviewing the document.
PFI appreciates the contributions of stakeholders who participated in the national
dissemination seminar. PFI would like to acknowledge: WHO India, National AIDS
Research Institute, Family Health International, Centre for Disease Control, Indian
Network for People Living With HIV/AIDS, Plan International, Confederation of
Indian Industry, USAID, Christian Medical Association of India, National Institute of
Medical Statistics, and other organizations and experts involved in the issues of care and
support to PLHAs.
PFI is grateful to Dr. Sujai Suneetha, Nireekshana, Hyderabad and Prof. Indrani Gupta,
Institute of Economic Growth, University of Delhi for their consultancy service
provided for the study.
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Population Foundation of India
Prelude
Population Foundation of India is implementing the project “Access to Care and Treatment” in six HIV high
prevalence states in India funded by the Global Fund to fight AIDS, Tuberculosis and Malaria under Round 4
grant. On the basis of program needs and experiences, PFI identifies issues needing attention and conduct
special studies to provide possible solutions. These special studies are seen as integral elements of the program
and the results are expected to feed the program to improve coverage, effectiveness and ultimately profit the
beneficiaries.
The study on setting up guidelines for providing care and support services including palliative care for people
living with HIV/AIDS is one such study that PFI had conducted recently. National AIDS Control Organization
(NACO) felt the need of revising the guidelines of care centers to make care and support program more
effective and to meet the emerging needs of PLHAs, in the NACP III. Hope the findings and conclusions of the
study presented in this report would be of some use to NACO/SACS and other organizations/centres involved
in care and support programs for people living with HIV/AIDS.
For further details, please contact
popfound@sify.com Tel: +91-011-42899770
Context
The Population Foundation of India (PFI) is implementing the project, “Access to Care and Treatment”, under
the Round 4 grant from the Global Fund to fight AIDS, Tuberculosis and Malaria. One of the main activities of
this project involves setting up of Care and Support Centres in high prevalence states in India and make service
provision accessible to PLHAs.
Comprehensive HIV/AIDS care is a holistic approach for meeting the needs of the people living with
HIV/AIDS. A handful of Community Care and Support Centers provide such care for PLHAs, and augment
the work of health care services. While the provision of palliative care should be a part of the package of
services, no clarity exists at present, largely because no attempts have been made to define palliative care in the
context of HIV/AIDS. In general, no standard guidelines are available defining the minimum and additional
package of care and support services and the absence of such standard guidelines for the provision of adequate
care and support is a constraint in quality implementation of care and support programs. Developing these will
help programme managers, implementers, and policy makers at the state and national level to conceptualize the
requirements of Community Care Centers for PLHAs.
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Guidelines for Care and Support Services
Objectives
Therefore, the study had the following objectives:
1. Arrive at defining palliative care
2. Define the basket of services provided from the care and support centers including palliative care
3. Understand the running cost of care and support services
The objectives are achieved by exploring the care and support services currently in place at multiple locations.
Study Area
Based on the need to identify a minimum and additional package for a care centre, and define palliative care in
the context of HIV/AIDS and upon consultations with stakeholders, the following nine well-established Care
and Support Centers that also provide palliative care services were selected:
1. Accept Bangalore
2. Adarsh Hospital Imphal, Manipur
3. Emanuel Hospital Association New Delhi
4. Family Planning Association of India Madurai
5. Leprosy Patients Welfare Society Imphal East, Manipur
6. Pain and Palliative Care Centre Calicut Medical College, Kerala
7. Sahara Centre for Residential Care and Rehabilitation New Delhi
8. Snehadaan Bangalore
9. YRG CARE Chennai
The first part of the study was conducted during March-April 06 and the second part on costing was during
October-November, 06.
PFI contacted a total of 11 Centres inviting them to become part of the study. In addition to above list 9 centres,
PFI contacted two more centres: 1. Freedom Foundation, Bangalore and 2. Government Hospital Thoracic
Medicine, Tambaram Sanatorium, Chennai. Owing to some reasons, these two centres could not take part in the
study. Nevertheless, the response from the centres contacted was overwhelming.
These centers were identified for the study based on recommendations of key stakeholders and also Centre's
willingness to participate in the study.
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Population Foundation of India
The survey tool prepared for the study included the collection of general and specific information on staffing,
kinds of services provided, guidelines, bed capacity, referral systems, home/community care, funding, cost of
services, strengths and weaknesses as reported by the centre. In addition, a literature review and interviews with
key stakeholders - WHO India, NACO, UNAIDS, USAID, CDC and informants affiliated with the chosen care
centers, formed a part of the study.
Findings
Based on the information collected, care and support services were grouped into three broad categories and
presented in the table below:
Physical/medical
services
Symptoms management
· Nutrition & lifestyle
counseling
· OI prophylaxis and
administration
· Pain relief/ discomfort
relief
· Depression & mental
illness treatment
· Parental hydration &
medication (IV fluids)
· Hygiene and basic
nursing care &
education
· Opportunistic infections
management
Diagnostic
· HIV
· Opportunistic Infections
· Basic
· CD4
Curative
· ART
Social support systems and
services
Individual and family
· Food and nutrition support.
· Referrals/Links
C SHGs & solidarity
groups
C Home based care
C Orphanages/institutional
care
C Education support
CIA/CAA
C Vocation training,
rehabilitation
C Shelter for widows/
children
C Legal assistance
(discrimination,
inheritance)
· Financial support: PLHAs,
spouses, families
C Micro credit/loans
C Income generation
projects- PLHA,
widows/spouses
· Burial assistance
Psychological, Emotional &
Spiritual Support Services
Individual and family
· Spiritual Support
C Meditation, yoga, prayer
C Access to spiritual leaders
C Life & death-faith/teachings
· Counseling
C Guilt, shame, acceptance
C Human rights/ stigma/
discrimination
C Disclosure
C Relationships-healing
C PPTCT & existing children
C Behaviour/ prevention/
positive living
C Family/couple counseling
C End of life- preparing for
death/grief
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Guidelines for Care and Support Services
Further, the discussions with participating centres have provided various concepts of palliative care. Following
are 5 different concepts of palliative care that have emerged revealing varied understanding about the onset of
palliative care.
Model 1
Model 2
C&S
P.C
C&S
P.C
HIV
TIME
AIDS
HIV
Time
AIDS
C&S refers to care and support and P.C refers to palliative care
Model 1 shows there is no difference in the time between care & support services, and palliative care. Both
start at the onset of HIV and ends with the last stage, AIDS. However, model 2 shows care and support is
broader, while palliative care is sub activity. But, like in model 1, model 2 also shows both services start at
the onset of HIV and ends with the last stage.
Model 3
Model 4
C&S
C&S
P.C
HIV
TIME
AIDS
HIV
TIME
P.C
AIDS
While models 3 and 4 look same, the difference lies in the time of initiation of palliative care. It is understood
that in one scenario, palliative care end at AIDS stage, whereas model 4 shows that palliative care would go
beyond AIDS stage.
Model 5
C&S
HIV
TIME
P.C
AIDS
The last model is very peculiar. It clearly says palliative care starts only after AIDS stage and ends at certain
level, may be at death.
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Dissemination of Findings
The findings of the study from these centres were
shared at the national dissemination seminar. The
range of key stakeholders who participated included:
WHO India, National AIDS Research Institute,
Family Health International, Centre for Disease
Control, Indian Network for People Living With
HIV/AIDS, Plan International, Confederation of
Indian Industry, USAID, Christian Medical
Association of India, National Institute of Medical
Statistics, and other organizations and experts
involved in the issues of care and support to PLHAs.
The centres that had taken part in this study also
participated.
The dissemination seminar critiqued mentioned that
globally, human rights/legal needs constituted a
separate category in them and the model presented in
this dissemination lacked the human rights aspect,
which is important in the context of HIV/AIDS. It
was also felt that economic support is an important
component of care and support and should be
included in the model. In fact the comprehensive
approach to care and support should be within a
continuum in order to meet the varied material,
psycho-social, and medical needs of PLHA and those
affected.
In terms of the actual services listed under the above
categories (see Table 1), participants offered various
suggestions and comments. While some felt that
getting the CD 4 count done at a care centre would be
next to impossible and that should come under
“referrals”, others suggested that this decision be
based on the requirements of each state and its social
and legal situation. It was unanimously agreed that
STI related services including diagnosis needed to be
a separately categorized and that psycho-social
services should be included at every stage, not just at
the beginning. It was also suggested that referral
services be included right from beginning.
The components of a comprehensive service
package were deliberated upon. The NACO
guidelines were also discussed.
According to NACO in NACP II, the concept of
comprehensive HIV/AIDS care across the
continuum of care builds on HIV/AIDS care
services in a team spirit and includes the following:
· Voluntary counseling and testing
· Clinical management
· Nursing care
· Pre and post test counseling
· Care and home and in the community
· Formation of community support groups
· Eliminating stigma
· Social support or referral to appropriate
social welfare services
· Partnership building between various
providers
Source: http://www.nacoonline.org/guidelines/guideline_6.pdf
The dissemination seminar discussed various key
issues that are presented here:
Defining Comprehensive Care
Comprehensive Care meets the diverse needs of
people living with and affected by HIV, builds trust
and creates a receptive audience among patients,
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Guidelines for Care and Support Services
families and other community members and
enhances prevention efforts. It paves the way for
community acceptance of people living with HIV
and decreases stigmatization. Comprehensive care
was defined here as that which made economic,
psycho-social, physical, political and legal support
available to PLHAs and those affected by the
epidemic. The components of a system of
comprehensive care included psycho-social support;
life-skills training; community, family and partner
support, access to nutrition and a hygienic
environment, treatment of OIs; access to affordable
ART, palliative care and legal support. The provision
of care should also offer opportunities to make
prevention interventions more accessible and
available, and encourage those who receive it to
practice safer behaviour. Particularly essential to this
HIV care are counseling policies and practices that
ensure a better quality of life for people.
different facilities needed to be considered. DOTS
centres and whether care homes should have this
facility was another issue touched up on.
Networks antd Referrals
Networking and developing referral linkages are
practical approaches for addressing the different
needs that arise in the domain of care and support.
Specific practical partnerships can be developed and
referral plans to ensure a continuum of care and
support for PLHA. It is often inappropriate for care
centers to provide some services that are a key
component of care and support. Other kinds of
inputs are needed, for example if income generation
activities are being supported, they should be coupled
with an organization with experience in micro-credit.
A recommendation of NACP II has been to link
VCTCs with at risk communities and available care
and support centers in the area.
Diagnostics
Another concern expressed was the need to qualify
“diagnostics” for the purpose of clarity. Some felt
that the provision of a rapid HIV test was essential
and part of the minimum package at a care centre.
This was based on the fact that people were admitted
into a care facility only after they had a positive test
report, and testing done via a referral system caused a
delay, which affected the patient's health adversely. A
concern expressed by a participant was that while a
one-stop shop was an ideal situation, could centres
really scale up to that level? Aside from the kits
needed, the operational factors involved in including
Antiretroviral Therapy
Antiretroviral drugs are one component of a
comprehensive HIV/AIDS program that also
includes prevention and other care and support
facilities. A significant achievement of NACPII has
been the introduction and subsequent scale-up of
ART through the public health system. A
recommendation has been to strengthen the existing
mechanisms to improve coverage and compliance of
the ART regimen, which includes utilizing and
strengthening existing care centers. The immediate
task then is to integrate ART into the continuum of
care, treatment and prevention and situating it within
the existing health system.
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Population Foundation of India
The place of ART in the package was deliberated
upon by participants. The importance of situating
ARVs in the larger spectrum of care was discussed.
Some felt the provision of ART must be included in
the comprehensive package and that monitoring of
ART was necessary at a certain level of care. This
would include services to measure the CD4 count and
density of infection, ART management and
adherence. Discussion also ensued on the possibility
of having the laboratory capacity to do CD4 testing,
as well a system to monitor the impact of therapy on
the CD4 count.
STI Diagnosis and Treatment
Sexually transmitted infections (STIs) have been
shown to be a significant co-factor for HIV
transmission. Experiences in rural Mwanza, Tanzania
showed that improving the management of STIs can
reduce the incidence of HIV-1 infection in the general
population by about 40% (FHI). STI prevention and
treatment are, therefore, important components in
any HIV prevention strategy. Early STI diagnosis and
prompt treatment, especially of ulcerative conditions,
reduce vulnerability to HIV infection. Thus diagnosis
and treatment of STIs should be included in every
treatment, care and support package, as a separate
category.
Home Care
Home-care and its inclusion in the primary package
was discussed. Almost every centre in the study
provided this. One participant was restraint at putting
this down as an essential service. Yet it was
acknowledged that empowering the family and
community by including and training them to
provide care and support is of paramount
importance as they are the primary institution
involved in care and support, upon which the
sustainability of care rests. Failure to organize
community has been seen to lead to a lack of
demand for services. In the absence of support it
is difficult to get people to continue their treatment
and get well. The participants also agreed that
home-based care should be kept out of the
services of care and support centers.
Economic Support
One participant expressed the need for a balance
in the list that has been charted out. It was felt that
while aspects of medical care had been given
importance, support services linked to livelihood
support was missing. It was pointed out that the
model under discussion was not a support model,
but rather, a care one. Support means building
resilience in people to enable them to cope with
their disease and life and providing this would have
different implications.
Palliative Care
The next session of the workshop focused on
defining services for the provision of palliative
care in the context of HIV/AIDS. The need to
incorporate the principles and practices of
palliative care into the management of patients
with advanced HIV infection and AIDS has been
obvious to those who work in the field of palliative
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Guidelines for Care and Support Services
care for a long time. But palliative care in the context
of HIV/AIDS has a chequered history. In the early
days, accepting palliative care was equated with
"giving up". Then as the death rates increased in the
early 1990s, palliative care became more acceptable.
Palliative care is an essential component of a
comprehensive package of care for people living with
HIV/AIDS because of the variety of symptoms they
can experience - such as pain, diarrhoea, cough,
shortness of breath, nausea, weakness, fatigue, fever,
and confusion. Palliative care is an important means
of relieving symptoms that result in undue suffering
and frequent visits to the hospital or clinic.
Another point of view expressed was that
HIV/AIDS care means a holistic and supportive
care, and palliative as a concept has to come into
healthcare services. However, in the context of
HIV/AIDS, some felt there was no need to create a
separate category of palliative care services since all
care and support services in the context included
palliative care to some extent, consciously or
unconsciously.
It was agreed that the definition of palliative care in
the context of HIV/AIDS is difficult since the illness
is not like cancer. Pain in cancer, for which palliative
care is typically administered, differs from pain in
HIV. A question about the definition of pain for a
person suffering from HIV/AIDS then arose: Would
this be emotional, or the discomfort that arose from
OIs or what? A discussion ensured around the
determinants of palliative care, and how to define
this. Does palliative really mean end of life care or can
it be redefined for this situation? One participant said
this was about “Improving the quality of life of
patients and families.” Other questions that arose
were: Was palliative care provided only in the context
of an incurable disease and when death was imminent;
should it depend upon the stage of the disease; should
it be provided when other medical interventions
became redundant and; is it just for the management
of pain or for other symptoms too? An issue
deliberated upon what was the stage at which palliative
care should be provided for PLHAs Should it begin at
stage 1, or later when the disease progresses? One
conclusion was that if the intention was to mitigate
suffering, it should be offered right at the beginning.
Components of Palliative Care:
· Pain management
· Functional/preventive interventions for all
the patients
· Management of key symptoms
· Affirms life and regards dying as a normal
process;
· Intends neither to hasten nor postpone death;
· Integrates the psychological and spiritual
aspects of patient care;
· Offers a support system to help patients live as
actively as possible until death;
· Offers a support system to help the family
cope during the patient's illness and in their
own bereavement;
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Population Foundation of India
· Uses a team approach to address the needs of
patients and their families, including
bereavement counseling, if indicated;
Palliative Care in HIV/AIDS, as defined by
Health Resources and Services Administration
(HRSA): The Health Resources and Services
Administration (HRSA), an agency of the U.S.
Department of Health and Human Services
Palliative care in HIV/AIDS disease is that care which
is patient- and family-centered and optimizes quality
of life by active anticipation, prevention and treatment
of suffering through respectful and trusting
relationships formed with an interdisciplinary team
throughout the continuum of illness, addressing
physical, intellectual, emotional, social, and spiritual
needs and facilitating patient autonomy, access to
information and choice. Palliative care extends
throughout the continuum of disease.
Source: http://www.hab.hrsa.gov/tools/res/what.htm
1. Palliative Care : Definition
The definition of palliative care that emerged in the
dissemination seminar is presented here:
The consultation ended with the following working
definition of the term “Palliative Care” in the context
of HIV/AIDS: “Holistic, total, active care undertaken
when disease specific treatment cannot improve
quality of life or when such disease specific treatment
is not accessible".
WHO definition of Palliative Care
Palliative care is an approach that improves the quality
of life of patients and their families facing the
problem associated with life-threatening illness
through the prevention and relief of suffering by
means of early identification and impeccable
assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.
Source: http://www.who.int/cancer/palliative/definition/en/
Other definitions of Palliative Care emerged
during the initial interactions with 9 centres
selected for this study
· “Total care and support of an individual (and
their family) with an incurable illness such as
AIDS, aiming at improvement of quality of
life.”
· “Integrated treatment, service and support of
individuals and their families, who have an
incurable disease.”
· “When the patient is in AIDS stage, medically
nothing can be done and the family members
are not willing to do anything, then only pain
management, quality of life and a peaceful
death is given.”
· “Palliative care commences at the late stages
of the disease. E.g. When CD4 count is less
than 10.”
· “End of life care, when medical interventions
cease to be effective and the person is
expected to die soon (within 1-2 weeks). Pain
management, best possible quality of life and
dignified death are provided.”
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Guidelines for Care and Support Services
Modified Package
Arriving at a consensus on the comprehensive services package, it was stressed that quality and processes not be
neglected in this discussion; that while defining the minimum services, the minimum quality and processes also
be defined. Tools to monitor adherence should be added. Participants suggested that the group list out the total
services in detail, and then cull out the minimum services. Following this, the processes (training) involved in
providing the services and also the merits and demerits of a stand-alone centre vs an integrated were debated.
The question about what constituted an enabling environment in terms of policy, process and services aimed at
the individual, the family and the community at large was also raised. Finally, the list of comprehensive services
was listed out in detail based on the three categories: Medical, Social and Psychological.
Medical
· Diagnosis
· PPTCT
· ART monitoring and
management
· ART adherence
· OI prevention/treatment
· STI treatment/counseling
· Family Planning and
contraceptive provision
· Nutrition
· Depression/mental illness
· Substance abuse
management
· Hepatitis C/CMV
· Harm reduction
· Immunization for children
· 2nd Line treatment
· PEP need and training
· Subsidized pharmaceuticals
· Alternative medicine
education
· Sensitization of other
health care service
providers/community
groups
Social
· Family counseling and testing
· Treatment education for those
with HIV
· Economic support income
generation and rehabilitation
· CIA/CAA support,
widows/spouse support
· Life skills education/child
· Self help groups
· Gender, rights issues
· Human rights
· Marginalized groups
· Community education
· Peer education
· Legal assistance
· Work Place Policy
· Inheritance planning/legal
issues
· +ve living/counseling/ couple
counseling
· Harm reductionRecreation
activities
Psychological
· Depression
· End of life
care/bereavement
counseling
· Positive living/prevention,
couple counseling
· Crisis counseling
· Recreation activities Spiritual
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Population Foundation of India
Cross cutting services
· Contraceptive counseling/provision
· Blood transfusion
· Basic general health
· Reproductive health services
· Home based care
· Referral linkages
· Advocacy to policy makers and service providers
· Capacity building
· Palliative services
· Palliative care education
The above listed services were then categorized into two categories: minimal and additional. Based on the discussions
held at dissemination and stakeholders subsequently, a final understanding was arrived at of defining minimum and
additional package of services.
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Guidelines for Care and Support Services
3. Cost of Care & Support Services
The costing exercise was carried out to understand the
magnitude and variability in unit costs of running care
and support organisations for HIV positive
individuals, based on a range of services. The analysis
of such costs is critical from the perspective of
replicability and scalability.
Centres and Services
Out of the total 9 centres, a sub set of four community
care centres (CCCs) was examined in depth to
understand the running cost of a care centre. These
centres were chosen based on geographical spread of
operation and availability of information on costs.
As can be seen from Table 1, the scale of operation
varied somewhat across organisations, with Centre 1
being the largest of the four, with bed strength of 35,
and Center 4 the smallest, with only 10 beds for in-
patient care. This corresponds to the patient load as
well. During the year 2005-06, Centre 1 provided
services to 765 inpatients and 4,829 outpatients.
Except for Centre 3 where the government-run
Antiretroviral Therapy (ART) centre is collaborating
with the care centre to monitor patients while
initiating the therapy outpatient loads of all other
centres are more than the inpatient loads, as can be
expected. In case of Centre 3, patients of the
government ART centre stay at the centre for a week
to fortnight, depending on the side effects and
tolerance after initiating the treatment; this can also be
reflected on its Average Length of Stay (ALoS), which
is the lowest (8 days) among four centres. Centre 2
seems to be over-stretched with ALoS of 26 days and
Bed Occupancy Rate of 101 percent.
Table 1: Details of community care centres
Particulars
Total bed strength
Total In-patient bed days
Total IP
Total OP
Average Length of Stay
Bed Occupancy Rate
Centre 1
35
10,917
765
4,829
14
85
Centre 2
20
7,339
281
412
26
101
Centre 3
15
4,847
604
271
8
89
Centre 4
10
3,386
208
369
16
93
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Table 2 gives the range of services being offered at each of the centres. The scope of services is more or less
same except for laboratory facilities including HIV testing, and training activities. The scope of additional
services at these centres is determined to a large extent by the funding and support received from outside
Table 2: Types of services being offered by the community care centres
Services Offered
Outpatient care
Palliative and in-patient care
Laboratory facilities
HIV testing
Counselling2
Training
Outreach
Home-based care
Centre 1
Yes
Yes
Yes
Yes1
Yes
Yes
Yes
Yes
Centre 2
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Centre 3
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Centre 4
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Methodology
The study involved a) detailed discussions with various service providers and accounts officials at these centres,
b) data collection in a pre-designed format, c) analysis of the unit recurrent costs, and d) analysis of time
allocation of the human resource. The study also looked into the potential cost of setting up a basic laboratory
and other additional requirements that seemed essential in providing comprehensive services.
Analysis of costs
The analysis in this report is restricted to the recurrent costs; capital costs were not analyzed mainly because of
a) the limited use of additional information for the program and b) unavailability of detailed data that goes in
calculating capital costs. However, the proposed budget for a CCC (capital and recurrent expenses) as specified
by the National AIDS Control Organization (NACO) in the document entitled 'Guidelines for Community
Care Centres3 is provided, along with an audited account of fixed assets of one care center, in annexure I. A
1Only Rapid HIV tests are done
2This includes counseling for all patients and families who visit the Centres, and is not restricted to the HIV counseling and testing.
3http://www.nacoonline.org/guidelines/guideline_6.pdf
20
Guidelines for Care and Support Services
discussion on the proposed cost of activities that are not currently being funded, but seemed essential, is also
given later in the report.
The recurrent costs were calculated across various components for the financial year 2005-06. As can be seen
from Table 3, the costs have been classified into 11 different cost components. Total recurrent cost of Centre 1
is the highest, while Centre 3 has the least cost among the four centres. However, for comparison of centres, we
will be looking at the unit costs of operations.
Table 3: Recurrent costs across centres (in Rs. Thousand)
Cost components
Centre 1
Centre 2
Centre 3
Building & maintenance
1,286
310
250
Vehicles, tax & repairs, and travel
148
123
77
Medicines
767
708
260
Equipments
16
4
16
Employee welfare
202
0
19
Salaries
3,777
1,770
775
Diagnostic costs
102
6
24
Kitchen supplies
677
396
220
Care home activities
86
104
47
Office equipments/expenses
23
25
11
Miscellaneous
38
96
31
Total
7,122
3,541
1,731
Centre 4
204
44
405
0
0
1,378
0
244
17
12
45
2,350
How are these costs distributed across the different components? Figure 1 gives the proportion of total
costs by components.
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Population Foundation of India
Figure 1: Distribution of recurrent costs across centres
100
90
80
70
60
50
40
30
20
10
0
Centre 1
Centre 2
Centre 3
Centre 4
Salaries
Kitchen Supplies
Emplo yee Welfare
Office Equipments/Expenses
M edicines
Vehicles, Tax & Repairs, and Travel
M iscellaneo us
Equipments
B uilding & M aintenance
Care Ho me A ctivities
Diagno stic Co sts
Average
The figure indicates that salaries top the list, contributing about half of the total recurrent costs, followed by
medicines (14.5 percent) and building & maintenance (13.9 percent). Kitchen supplies an integral part of in-
patient care comprises around 10 percent of total recurrent costs. However, it only includes the cost of food
preparations being provided to the patients during their stay at the care centres and not their nutritional
supplement. The inability to provide nutritional supplement was mentioned as a major deterrent in providing
comprehensive care, since NACO funds do not have a provision for such nutritional support. The details of
potential cost of nutritional support are given later in the report.
The unit recurrent cost (URC) was calculated using two alternative denominators: bed days and number of in-
patients. The cost per bed days is obtained by dividing the total recurrent cost by the total inpatient bed days.
Total in-patient bed days, in turn, is obtained by adding the number of days a bed was occupied by any patient
during a month. Table 4 presents the URC using the two definitions for all the four centres.
22
Guidelines for Care and Support Services
Table 4: Unit recurrent costs across centres (in Rs.)
Unit recurrent cost
Centre 1
Recurrent cost per bed day
652
Recurrent cost per in-patient
9,310
Centre 2
483
12,603
Centre 3
357
2,866
Centre 4
694
11,297
Average
557
7,936
As can be seen, the cost per bed day is highest at Centre 4 (Rs. 694) and lowest for Centre 3 (Rs. 357), while cost
per in-patient is highest for Centre 2 (Rs. 12,603) and lowest for Centre 3 (Rs. 2,866). The average cost (over all
the four centres) per bed day is about Rs. 560 whereas average cost per in-patient day is around Rs. 8,000.
Clearly, the choice of the denominator will depend on the user of these figures: if total patient load is the more
intuitively appealing concept, the figure on per patient cost would be more useful; however, if the turnover of
patients or bed occupancy is the focus, the per bed day cost would be more appealing to use. While the per
patient cost looks high, the per bed day cost (which by definition, will be a much lower figure) may be more
sensible to use; higher the bed occupancy rate, lower will be this cost. This is therefore, a more appealing
concept both from the perspective of an effective CCC as well as a potential donor who wants to invest on a
CCC.
Figures 2 and 3 present a comparative picture for cost per bed days and cost per in-patient, respectively at
different centres.
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Population Foundation of India
Figure 2 Cost per bed days (in Rs.)
800
700
600
500
400
300
200
100
0
Centre 1 Centre 2 Centre 3 Centre 4 Average
Figure 3 Cost per in - patient (in Rs.)
14000
12000
10000
8000
6000
4000
2000
0
Centre 1 Centre 2 Centre 3 Centre 4 Average
It is interesting to note that the recurrent cost of Centre 3, which is a 15-bedded care centre, is even lower than
Centre 4. The apparent explanation for this can be gleaned from Tables 3 and 6. In absolute terms, the cost
incurred by Centre 3 on medicines (Rs. 260,295) and salaries (Rs. 775,200) is much lower than Centre 4 (Rs.
404,935 on medicines and Rs. 1,377,600 on salaries). The possible explanation for lower expenses on medicines
lies in the fact that Centre 3 has been able to purchase most of the medicines from the State Medical Corporation
at much lower prices than the market rate. The lower expenses on salaries are because of a) lower staff size, and
b) lower salary per staff. The number of nurses, health care workers and janitors (3, 2 and 1 respectively) is lower
than the numbers prescribed by NACO for a 10-bedded CCC. As for the salary per staff, different State AIDS
Control Societies seem to have different budgeted amounts for the centres under their jurisdiction. It may be the
case that the salaries of Centre 3 staffs are relatively less due to lower supply of funds. Finally, it must be
mentioned here that Centre 3 has added 5 beds on their own to NACO's prescribed 10 beds, and there was also
some mention of the need to hire additional personnel. Therefore, the lower expenses on salaries for Centre 3
should not be taken as an indication of greater productivity. To conclude, it is difficult to generalize the
minimum number of manpower needed to run a care centre optimally.
24
Guidelines for Care and Support Services
Time allocation
It was thought useful and interesting to understand the time allocation of various staff i.e. how much time do
different staff spend on various activities of a care centre. While it is difficult to calculate the actual distribution,
an attempt was made to arrive at a subjective assessment of it through detailed discussions with various
categories of staffs at all care centres. The major categories of activities include in-patient, outpatient, and
administration. Home Based Care (HBC)4, outreach5, and training are other activities that were mentioned by
some of the centres. As an illustration, the time allocation sheet (Table 5) and distribution of salaries across
services of Centre 2 are indicated below (Figure 4).
As can be seen from the salary distribution of Centre 2, around 62 percent of the total expense on human
resources is being consumed for in-patient services, while outpatient and administration services comprised
around 13 and 12 percent respectively. This information can be useful while planning for human resources for a
new set-up. It may however, be kept in mind that these figures are representatives of a particular care centre and
cannot be generalized.
4The medical team visits patient's residence once they are discharged and provide required services and counselling to the patient and family. The
frequency of such visit is once every month and in some cases once in every quarter.
5Outreach workers (not necessarily from the centre but volunteers form outside) visits households and encourage the ailing members to visit the
care centre for diagnosis.
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Population Foundation of India
Table 5: Time allocation across broad categories of human resources (in percent)
Staff Categories
In-patient Out-patient HBC Outreach Administration
Medical Officer
57.5
25.0
12.5
5.0
Nurse
80.0
20.0
Counsellor
40.0
40.0
10.0
10.0
Health Care Worker 70.0
20.0
10.0
Kitchen Staff
100.0
Janitor/Sweeper
90
20
Administration
Senior personnel6
Junior personnel7 20
100
20
20
80
Figure 4: Distribution of HR expenses
Administration
12%
Outreach
4%
HBC
9%
Out-patient
13%
6Comprises of project coordinator and administrative officer
7Comprises of assistant administrative officer, computer assistant and driver
In-patient
62%
26
Guidelines for Care and Support Services
Human resources
The amount of human resources required for providing service at the centre depends on the bed strength and
type services being provided. Based on the existing structure of human resource in our sample, the following
table (Table 6) gives the distribution of human resources across centres, as also the prescribed numbers given in
NACO guidelines for a care centre.
Table 6 : Distribution of human resource across centres
Human resource
Medical Officer/Doctor
Nurse
Counselor
Health Care Worker
Other medical personnel8
Kitchen Staff
Janitor/Sweeper
Administration
Junior personnel
Senior personnel
Centre 1
2
9
2
15
5
3
10
4
3
Centre 2
2
6
2
10
2
8
Centre 3
1
3
1
2
1
1
1
Centre 4
1
4
1
5
1
4
3
2
2
2
2
2
NACO
1
3
5
1
3
2
Clearly, CCCs have been innovative and have expanded wherever they could use other sources of funds, and
also depending on the felt need of the communities they are serving. The differences across centres is an
important point to bear in mind because the final staff strength is determined by both supply of funds and
demand for services, making it difficult to generalize the “optimal” size either of staff or of outcome
measures like bed strength or patient load.
8In case of Center 2 and Centre 4, laboratory technicians (2) should be included in case of an operational laboratory.
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Population Foundation of India
Additional essential services
The NACO funds cover a range of care and support services as can be seen from earlier sections. However,
there are a few services that were mentioned as an integral part of comprehensive care, but are not covered
under NACO guidelines. CCCs that are reliant mainly on NACO funds did raise concerns over non-
availability of these essential services. Following is a discussion around three such essential services.
Laboratory services
NACO care center guidelines do not mention laboratory as an essential part of a community care center.
However, the discussions with the care center authorities indicated that a laboratory that can carry out minimum
basic tests like Rapid HIV test, Haemogram, Liver function test, Kidney function test etc. is an essential need to
run the care center activities efficiently. This was discussed with all the four centers; Centre 1 does have a
dedicated laboratory9, while Centre 3 is able to manage basic tests, including Rapid test for HIV through a
laboratory that is catering to their core programmes family planning and reproductive health interventions.
The two centers in Manipur did not have laboratory facilities but expressed the need for one. The following two
tables (Table 7 and Table 8) indicate estimated capital and recurrent costs of setting up a laboratory. These
estimates, which officials at Centre 2 arrived at, indicate that the capital investment (apart from the cost of
building) would be a nominal Rs. 57,000 and the recurrent cost of reagents and manpower would be around Rs.
2,70,000 per annum.
Table 7: Estimated capital cost for a proposed laboratory (in Rs.)
Particular
No.
Amount
Digital Photo colorimeter
Micro-Pipette (100ml, 500ml, 100ml)
Florescent Microscope, Glass slide, clover slip, spreader
Water bath
Autoclave/Oven
Neubaur containing chamber
Westergen's stand/tube (ESR), Sentilation vial micro tips
Haemoglobinometer
Needle destroyer
Remi centrifuge machine
Total
1
8,000
1
6,000
1
15,000
2
2,000
1
6,000
1
3,000
1
2,000
2
2,000
1
3,000
1
10,000
57,000
9The actual cost of laboratory reagents for Centre 1 is Rs. 49482 and they have incurred Rs. 52000 on tests that have been done outside the care center. The manpower
cost comes to Rs. 90,000 per annum for a laboratory technician
28
Guidelines for Care and Support Services
This list is only indicative but not exhaustive. However, the list of essential lab equipment is provided in the
document of World Health Organisation entitled “Essential list of lab equipment and supplies for HIV
testing”10.
Table 8: Estimated recurrent cost for a proposed laboratory (in Rs.)
Particular
Reagent items11
Man Power12
Total
Cost per month
12,000
10,500
Cost per annum
1,44,000
1,26,000
2,70,000
Medical Van
In addition to the core activity of providing medical care services, the care centers are also actively
involved in various activities at the community level. This includes home-based care and community
outreach activities for networking, where the social/health workers visits a) new positive clients, b)
discharged clients, c) private practitioners, and d) other organizations and partners. Centre 1 and Centre 3
seem to be at a slight advantage in carrying out such activities due to the availability of a vehicle; the NGOs
expressed their urgent need for a vehicle for their outreach and home based activities. For these activities, an
ordinary vehicle is sufficient; however, there may still be a need for an ambulance or a medical van. For
example, an ambulance is necessary to bring ambulatory sick patients to the care centre. Similarly, a medical
van can help in providing treatment for minor ailments at home, especially when distances are substantial. In
fact, having a vehicle is also likely to reduce the in-patient expenditure for the CCCs.
At present, NACO does not provide fund for medical van or ambulance. If ambulance is too expensive and
difficult to maintain, a medical van can meet most of the requirements of the CCCs.
10www.afro.who.int/aids/laboratory_services/resources/list-laboratory.pdf
11Biluribin Kit, Albumin Kit, Protein Kit, SGOT (AST) Kit, SGPT (ALT), Alkaline Phosphate Kit, Glucose Kit N/10 HCI, 3% Acetic Acid, Leishmon
Stain, EDT A, Fluoride Solution, Oil, Emersion
12Lab. Technician (1*Rs. 6,500), Assistant Technician (1* Rs. 4,000)
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Population Foundation of India
The capital investment of Rs 2,50,000 to 3,00,000 is
envisaged for a medical van; recurrent cost would
include salary of a driver, cost of fuel and
maintenance, and a daily sustenance of staffs while on
outreach.
Conclusion
I. Care and Support Package
The study has provided the clear understanding on
minimum and comprehensive package of services:
Nutritional supplement
Nutritional needs of HIV positive clients have been
well documented; for those who are on ART,
A. Minimum Package of Services
· Diagnostics
· Preventive & Curative Treatment
· Counseling (for patients and their families)
· Health Promotion/Education (for patients
and families):
· Social Services
· Staff & Internal Safety Services
B. Additional/Referral Services
Both A and B together form comprehensive
package of services.
nutritional supplement has been found to be a major
source of out of pocket expenditures. The clients of
community care center receive balanced diet and
supplements during their stay at the care homes, but
once discharged, many of them are unable to take
nutritional supplements beyond regular meals at
home. The lack of nutrition becomes a serious issue
when the client is on ART.
C. Definition of Palliative Care
The study offered a working definition for “Palliative
Care” in the context of HIV/AIDS: “Holistic, total,
active care undertaken when disease specific
treatment cannot improve quality of life or when such
disease specific treatment is not accessible".
II. Costing
This study is an illustration of how costing can be
done for care centers, and can be used as a model for
future such studies. The actual results are indicative
of what it would cost to set up a minimum set of
services; the Centre 4 and Centre 2 results can be used
as the minimalist model without vehicle and
30
Guidelines for Care and Support Services
laboratory. The Centre 1 model should be used as a
more comprehensive package, since it has both these
services. Thus, the unit recurrent cost per bed day for
a CCC providing minimum set of services, which
includes OPD, in-patient care, home-based care and
outreach activities would approximately be around
Rs. 700, while it would be around Rs. 650 for a centre
providing additional services that include laboratory
services and medical van. While some element of
each of the points listed under additional/referral
package in package of services: minimum and
additional may be present in each of the centres, these
are not really standardized or significant enough to
warrant being called part of a comprehensive package
of services. However, centre 1 comes closest to a
more standardized definition of comprehensive care.
A comprehensive array of services - which would need
significant capital investment - would be more cost-
effective where the patient load is higher. Based on
the small sample size, further generalizations are not
possible. Finally, there are variations to the costs
across the centers, for supply and structural reasons,
as also demand factors. Centres differ based on
funding, personnel hire, salary structure and the
services they think are required to meet the demand
of their communities. In future, a more expanded
sample can be used for analysis, so that such variations
do not significantly affect the results.
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Population Foundation of India
Annexure I
DETAILS OF FIXED ASSETS AND CAPITAL COSTS
A detailed break-up of total capital costs across components has been collected from Centre 2. Since the items
in the table are specific to a CCC, these numbers should be used only as an illustration of the kind of capital cost
that can be incurred by a CCC; needless to say, the scale of operation would determine to a large extent the
variation in capital costs across CCCs.
ITEMS
Details of fixed assets of community care centre - Centre 2
Opening Addition13
balance as
during the
on 1.4.2005
year
Total
Depreciation
Rate (%) Amount
Closing
balance
31.3.2006
Land
21,200
526,500
547,700
0
547,700
a) Kitchen/Latrine (Home) 31,702
31,702
10 3,170
28,532
b) Hospital Building
457,000
457,000
10 45,700
411,300
Sub total
488,702
0
488,702
48,870
439,832
General Section
a) Furniture & Fixture
b) Plant & Machinery
c) Audio-visual Equipment
d) Utensils & Crockery
e) Office Equipments
f) Medical Equipments
g) Tools & Equipments
h) Hospital Equipment
- i) Vehicle Maruti Gypsy
9,486
5,132
678
12,673
2,786
1,453
7,818
5,162
5,245
9,486
5,132
678
12,673
2,786
6,698
7,818
5,162
10
949
15
770
15
102
8,537
4,362
576
15 1,901
15
418
20 1,340
15 1,173
20 1,032
10,772
2,368
5,359
6,646
4,130
13Since there were no sales/discarding of capital goods in this year, this column has been omitted
32
Guidelines for Care and Support Services
j) Ambulance Maruti Van
76,138
k) Camera
Sub total
27,054
148,380
Foreign Contribution Account
a) Building (I.P. Ward)
22,104
b) Steel Gate (Hospital)
2,889
c) General Equipment
2,035
d) Medical Eauipment
746
Sub total
27,774
20- Bedded Community Care Centre
a) Hospital Furniture/Supply 265,732
b) T.V./VCR/Accessories
10,718
c) Sewing Machine
2,565
d) Linens & Clothing
7,972
e) Computer with Accessories 45,188
f) Kitchen Equipment
12,462
g) Tape recorder, Radio
478
h) Water Reservoir
16,271
i) Medical Equipment
119,398
j) Bed & Bedding
6,323
k) Other Equipments
10,197
l) Office Equipment
m) Building Extension
5,835
2,496
Sub total
505,633
TOTAL
1,170,489
5,245
5,245
76,138
27,054
153,625
22,104
2,889
2,035
746
27,774
265,732
10,718
2,565
7,972
45,188
12,462
478
16,271
119,398
6,323
10,197
5,835
2,496
505,633
1,175,734
20 15,228
15 4,058
26,969
60,910
22,996
126,656
10 2,210
10
289
20
407
15
112
3,018
19,893
2,600
1,628
634
24,756
10 26,573
25 2,679
15
385
50 3,986
25 11,297
25 3,115
50
239
50 8,135
20 23,880
50 3,161
25 2,549
15
875
10
250
87,125
165,983
239,159
8,038
2,180
3,986
33,891
9,346
239
8,135
95,518
3,161
7,647
4,960
2,246
418,508
1,009,751
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Population Foundation of India
Annexure II
PROPOSED BUDGET FOR A COMMUNITY CARE CENTER FOR A YEAR
Guidelines for Community Care Centres in NACP II
Source: http://www.nacoonline.org/guidelines/guideline_6.pdf
CAPITAL EXPENDITURE
Particulars
10 Beds @ RS. 2000/- each
10 mattresses @ RS. 500/ - each
Linen
Furniture (Cupboards, dining table, side tables)
1 telephone connection
4 geysers (four bathrooms)@ RS. 3900/ - each
4 room coolers @ RS. 2500/- each
4 convectors @ RS. 500/- each
6 Fans and electrical fittings
Amount (in Rs.)
20,000
5,000
30,000
60,000
15,000
15,600
10,000
2,000
6,000
KITCHEN EQUIPMENT
Kitchen Equipment (Pressure cookers, acquaguard, refrigerator, gas stove)
30,000
PATIENT CARE EQUIPMENT
2 Weighing Scales
3 pairs of crutches
8 ice packs
4 hot water bottles
4 electronic thermometers
6 steel basins
1,040
1,200
800
400
960
1,200
34
Guidelines for Care and Support Services
2 screens
1 X ray illumination box
Steps (2 sets)
2 revolving stools
1 cupboard for storage of medicines
2 stethoscopes
2 BP apparatus
4 oxygen cylinder with accessories, stand and trolley
2 Nebulisers
2 sets of endotracheal tubes
Instrument sterilizer
Dressing drums (12 Nos. of various sizes)
2 Autoclave 16/25
Instrument cabinet
10 Nos. saline stand
Voltage stabilizer
2 ENT sets
Recreational facilities (TV, VCR, Music System, Library)
Washing machine
FOR OFFICE
Table x 2
Chairs x5
Computer and printer
Filing cabinet
Calculator
Cash box
Stationery
TOTAL FOR CAPITAL EXPENSES (A)
2,600
1,500
900
900
4,300
700
1,300
22,000
7,000
2,500
1,575
10,765
25,600
4,000
7,000
900
3,000
45,000
15,000
3,000
2,500
60,000
5,500
400
600
2,000
429,740
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Population Foundation of India
RECURRING EXPENSES
Rent @ RS. 10,000/ - per month
120,000
Food expenses at care home @ RS. 50/- per day per patient
180,000
Medication at care home @ RS. 75/- Per day per patient for twelve months (10x75x30x12) 270,000
Care home repair and maintenance
Linen maintenance @ RS. 1000/- per month
Travel conveyance @ RS. 3000/- per month
Electricity and water bills @ RS. 3000/- per month
Disposals ( IV sets, IV catheters, syringes, needles, gloves, dressing equipment)
@ RS. 3,000/- per month
Telephone bills @ RS. 1500/- per month
Contingency amount (cremation charges, performance of last rites)
12,000
12,000
36,000
36,000
36,000
18,000
25,000
SALARIES
One part time doctor @ RS. 8000/- per month
Project Coordinator @ RS. 6,000/- P.M.
Nurses x 3 @ RS. 5500/- per month
Health workers x 5 @ RS. 4000/ - per month
Administrator @ RS. 5000/- per month
Cook @ RS. 3000/- per month
Janitors x3 @ RS. 2000/- per month
96,000
72,000
198,000
240,000
60,000
36,000
72,000
TOTAL FOR RECURRING EXPENSES
1,519,000
TOTAL BUDGET (RECURRING AND CAPITAL EXPENSES)
1,948,740
36