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Review of Quality Care in Community Care Centre %2C Global Fund Project |
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POPULATION FOUNDATION OF INDIA
B-28, Qutub Institutional Area, Tara Crescent, New Delhi-110 016
Phone: +91-11-42899770 Fax: +91-11-42899795
Website: www.popfound.org
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Review of
Quality of Care in
Community Care Centres
may 2009
POPULATION FOUNDATION OF INDIA
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Acknowledgements
T he Population Foundation of India is thankful to Samraksha, Bangalore, for undertaking
this study. PFI acknowledges the sincere efforts of Dr. Sanghamitra Iyengar, and her
team comprising K. Sulekha, Divya Sarma and Srividya Harish in conducting the study
effectively and placing impressive efforts for bringing up the report with good programmatic
perspective.
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PFI would like to convey deep gratitude to the respondents at all four centres, Karuna Shakti,
Ahmedabad; Umang, Varanasi; Sathi, Ujjain and Jeevan Sagar, Muzaffarpur who opened their
hearts to us. Their willingness to spend time and share their stories freely lent a context to their
experience in the centre and made the interviews richer. PFI would also like to say a special thank
you to all the staff who went out of their way to ensure that the research team could meet the
required number of people even when the in flow was low. Their willingness to look into the
issue of quality with complete openness of spirit and to come up with concrete suggestions is
very much appreciated. PFI specially thank the management of all four centres who were equally
committed to strengthening the quality of care, and who provided us with all the support needed
for the study.
PFI gratefully acknowledges the comments and inputs provided by partner organizations during
the results dissemination that helped fine-tune the report.
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Prelude
T he Population Foundation of India is implementing the project “Promoting Access to
Care and Treatment” in eight highly vulnerable states in India funded by The Global
Fund To Fight AIDS, Tuberculosis and Malaria under Round 6 grant.
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As a mandate of the GFATM and to make clients’feedback an integral part of improving the quality
of service delivery, PFI commissioned a study on reviewing the quality of care at Community
Care Centres during December 2008. Hope the findings and conclusions of the study presented
in this report would be of significant use to the community care centres across the country and
to the managers implementing care and support programs and ultimately benefit the people
living with HIV/AIDS.
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Abbreviations
AIDS
Acquired immune deficiency syndrome
ART
Antiretroviral therapy
CBCI
Catholic Bishops’ Conference of India
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CCC
Community Care Centres
DLN
District Level Network for People Living With HIV/AIDS
FBO
Faith Based Organizations
FGD
Focus Group Discussions
GFATM
The Global Fund to Fight AIDS, TB and Malaria
HIV
Human Immunodeficiency Virus
HLFPPT
Hindustan Latex Family Planning Promotion Trust
ICTC
Integrated Counseling and Testing Centre
IDI
In-Depth Interview
INP +
Indian Network for People Living With HIV/AIDS
NACO
National AIDS Control Organization
NACP III
Third phase of the National AIDS Control Programme
NGOs
Non-governmental organizations
OI
Opportunistic Infections
PACT
Promoting Access to Care and Treatment
PFI
Population Foundation of India
PLHIV
People living with HIV
WHO
World Health Organization
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Contents
Acknowledgements
3
Prelude
4
Abbreviations
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Contents
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List of Tables
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List of Figures
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Executive Summary
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Chapter 1: Background
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Chapter 2: Review of Literature
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Chapter 3: Methodology and Findings
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3.1 Socio-demographic Profile of the Clients interviewed at the centre:
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3.2 Defining Quality of Services
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3.3 Experience of Care services and Satisfaction with them
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3.3.1 Facilities
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3.3.2 Perceived improvements in health
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3.3.3 Staff responsiveness to patient needs
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3.3.4 Emotional needs and support
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3.3.5 Treatment education and adherence
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3.3.6 Positive living and positive prevention
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3.3.7 Networking with external services, groups
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3.3.8 Respect and absence of stigma and discrimination
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3.3.9 Confidentiality
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3.4 Staff Competence
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3.5 Family Involvement
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3.6 Impediments to Quality and Suggestions for Improvement
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Chapter 4 Conclusions and Recommendations
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References
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List of Tables
Table 1: Female-Male distribution
Table 2: Urban-Rural distribution
Table 3: Distribution according to education
Table 4: Time of Contact with centres
Table 5: Centre wise Source of Referral
Table 6: Distribution according to ART
List of Figures
FIGURE 1 : Duration of contact with the centre
FIGURE 2 : Source of referral to the centre
FIGURE 3 : Level of overall satisfaction across different categories
FIGURE 4 : Respondents expressing overall high satisfaction, by centre and category
FIGURE 5 : Critical needs met by the centre spontaneously identified by respondents
FIGURE 6 : Respondents reporting high satisfaction on improvements in
health status, by category and centre
FIGURE 7 : Gender and experience of symptom relief
FIGURE 8 : Systems of admission and consultation
FIGURE 9 : Knowledge and practice of safe sex
FIGURE 10 : Gender and knowledge and practice of safe sex
FIGURE 11 : Centre linking clients to positive groups
FIGURE 12 : Assurance of confidentiality in the different centres
FIGURE 13 : Involvement of family members in care
FIGURE 14 : Staff perception of admission guidelines at the CCC
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Executive Summary
Introduction
medicines, emotional support, provision of knowledge
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on the HIV and treatment and respect and dignity as
Population Foundation of India, for its Promoting the major dimensions of quality. In addition to this, the
Access to Care and Treatment (PACT) Program under staff also identified good team work, leadership and
GFATM Round IV, reviewed the quality of care provided holistic care beyond just ART observation as critical to
in Community Care Centres (CCC) set up by the its care.
partners CBCI and HLFPPT. The purpose of this study
was to review the quality of care provided in these There was a high level of overall satisfaction, expressed
centres, by exploring client satisfaction and client across the centres. Across the four centres, 82% of
experiences of care.
the clients, 75 % of the family members and 83 % of
the service providers reported high level of overall
Methodology
satisfaction. Most clients expressed an overall sense of
Four CCCs were chosen for the study keeping in mind
criteria like case load, geographical representation and
equal representation of the implementation partners.
satisfaction with the facilities at the centres, and they
spontaneously identified key services being provided
like food, shelter and medicine.
The study adopted a mix of qualitative and quantitative
methodology and the following tools were used for
data collection:
• A Client Satisfaction Scale, administered on clients,
family and staff that provided quantitative data
• An In depth Interview with clients, family members
and staff
• Focused Group Discussions with clients, family
members and staff
The Client Satisfaction Scale and IDI was administered
to 80 clients, 25 family members and 24 staff.
In each of the four centres, two FGDs, one with the
client and family members and the other with the staff
were conducted.
Clients and Family Members appreciated the
environment at the centre, with over 92 % of the
clients and family members saying the atmosphere is
peaceful, homely and gives them courage.
The space and structure of the centre has not seemed
significant for most of the clients or family members. Of
those who responded, 50 % felt that there was scope
for improvement, primarily related to specifics such as
lack of toilets or distance of the toilets from the ward
in one centre, and the location of the ward in the first
floor in another centre.
88 % of the staff, 82 % of family members and 92.3 %
of staff reported improvement in health status of the
client, but in the in-depth interview, only 46 % of the
clients reported complete symptom relief. Many of the
clients were actually asymptomatic.
Key Findings
The clients, family members and staff across all centers
identified good medical consultation, adequate
The staffs are reported to be responsive to most
medical needs, 75 % of the clients and 70 % of family
members reported staff responsiveness to patients
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needs. However, staff responsiveness to emotional did not express a sense of assurance on this domain.
needs was found to be inadequate; in many cases this For many, it was not an issue since they lived far away
was not clearly articulated but many clients and family from the centre, or had already disclosed their status in
members were still suffering from emotional distress, the community.
which had not been shared with staff. Although 70 %
of the respondents did not respond specifically to this
probe, of those who did, 71 % of the clients and 64 %
of the family felt that staffs were not able to respond to
emotional needs.
Family involvement in care was largely absent and
there was no recognition or harnessing of the family
members potential to provide sustainable care. Less
than 10 % of the clients and 25 % of the family members
reported any kind of systematic education on how to
Treatment education, especially for ART adherence, is care for the client. Some centres actively discourage
given mostly at the ART centre, but the CCC served as family involvement.
a point where the information was reinforced. Inputs
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on positive living were reported to be mostly general While most providers report a high sense of client
advice by 82 % of the clients and 53 % of the family satisfaction, their own level of satisfaction was low;
members. There was no attempt to systematically many expressed frustration at the limitations of CCC
provide input or personalize inputs to the context of mandate; according to the guidelines, which forced
the clients. Knowledge and practice of safe sex was them to refer extremely sick patients in need of care to
also low, with only 24 % of the clients reporting regular other settings.
condom usage, and 10.3 % actually reporting no
knowledge of safe sex.
Some of the impediments identified for good quality
care included rigid guidelines which restricted the kind
The networking with ART centre was good, with 95 % of clients who could be admitted and the duration of
of the clients who responded on the probe reporting their stay, restrictions in the geographical reach which
good linkages; 66 % of the family members also prevented follow-up of clients coming from distant
reported good linkages. For many clients the CCC was places, lack of holistic care, and in some centres lack
a place of shelter when they came for ART medicines of facilities for family members to stay. Some of the
and many valued the fact that centre staff personally suggestions for improvement included setting up of a
took them to the ART centre and facilitated different lab for diagnosis, improvements in space and structure
processes.
of some centres, greater involvement of family and
nutrition supplements to the clients.
More than 50 % of the clients also reported that the
centre has linked them with positive groups, this
number was low only in Muzaffarpur, where the nearest
network in the vicinity is in Patna. However, nearly 40
% of them do not attend meetings regularly or are still
considering whether to join the network or not.
Conclusion
The centres have largely succeeded in maintaining a
positive environment, where the clients feel respected
and loved.
The centres have largely maintained a respectful,
stigma free environment, with 98 % of clients and 96 %
of family members affirming that they face no stigma
and discrimination. In addition, 73.4 % of clients and
73 % of staff report that staffs treat them with a lot of
respect.
Confidentiality in the centre presented different
dimensions, while some of the clients and family felt
that confidentiality is maintained in the centre, others
There is a good forward backward linkage with the ART
centre, but all the centres have low in-flow, and are not
functioning to 10 bedded capacity.
The centres have not understood the role of family
members in care, and there is no systematic attempt
to involve them in care. Similarly, inputs on treatment
adherence and positive living are largely confined to
general advice, with little attempt to personalize it to
the context of the clients.
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The role of counseling has low visibility; counselors are and vent their feelings are necessary in order to help
primarily seen as doing documentation, and giving the staff to retain their genuine commitment and
basic awareness of HIV. Deeper involvement and spirit of reaching out to the people.
addressing of emotional problems was not seen.
Systematic inputs, and individual treatment, adherence
There is some confusion about the mandate of the
CCC, and guidelines, even though NACO guidelines
say CCCs are expected to provide OI management, the
and positive living strategies have to be evolved to
make it personalized and relevant to the context of the
clients
centres were not entirely clear on this regard.
Family members are a significant source of support
Recommendations
and care for the clients, and centres have to start
acknowledging and systematically planning their
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Greater clarity is needed on the role of the care centres, involvement in care, for sustainability beyond the care
so that the centres can reach out and harness their centre.
maximum potential
Counseling needs to go beyond the primary
Systematic capacity building is required for all staff to
reach out at deeper levels and make more effective
changes. Team building activities as well as structures
activities, which can give space to staff to articulate
information giving role and to offer clients the space
to articulate and ease their deeper stress and concerns.
The capacities of the counselor needs to be built up
accordingly.
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Chapter 1:
Background
P opulation Foundation of India is one of the
Principal Recipients under the HIV component
of Round 6 of The Global Fund to Fight AIDS, TB
in order to meet this need. Accordingly, two of the
partners, CBCI and HLFPPT are expected to set up
69 CCC in the Geographical Focus Area in Phase I of
andMalaria(GFATM).Thisgrantisinlinewiththenational Round VI. These centres are set up in partnership with
level priorities listed under NACP III, where under care non-governmental organizations (NGOs) and Faith
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and support, the programme plans to promote access Based Organizations (FBO). The CCCs have been set up
to care and treatment, and to strengthen family and at locations convenient to access from the community
community care through psychosocial support to the and the Antiretroviral Therapy (ART) centre through a
individuals, improve adherence of the prescribed ART Joint Appraisal process.
regimen and address stigma and discrimination. In
keeping with these priorities, Population Foundation
of India (PFI) is implementing the Promoting Access to
Care and Treatment (PACT) programme, in eight highly
vulnerable states: Uttar Pradesh, Madhya Pradesh,
Rajasthan, Gujarat, Bihar, Chhattisgarh, West Bengal
and Orissa. The three sub-recipients of this grant are the
Catholic Bishops’ Conference of India (CBCI), Hindustan
Latex Family Planning Promotion Trust (HLFPPT) and
the Indian Network for People Living With HIV/AIDS
(INP +).
As part of the agreement with GFATM, PFI committed
to undertake a study to understand client satisfaction
with the quality of services, received at the CCC. This
was not only a critical part of the Monitoring and
Evaluation Plan, but also an opportunity to effectively
include client feedback and ideas into building a more
effective and responsive programme. The overall
purpose of the study was to see that the, efficient
systems are in place , so that more PLHIV could seek
services and witness better health outcome.
One of the core objectives of this programme is to
establish Community Care Centres (CCC), as a link
with the ART unit, in order to ensure access to OI
Treatment and ensure ART adherence through the
establishment of CCC. An estimated 350 CCCs are
needed in the country, to meet the need of services
for People living with HIV (PLHIV) as per National AIDS
Control Programme (NACP III). 228 CCCs need to be
set up along with the existing 122, under Round VI,
PFI therefore commissioned a study to review of
client satisfaction and quality of care in the centres.
Centres set up in the second and third quarter of the
programme (Oct – Dec 07 and Jan –March 2008), were
chosen for the purpose of the study, mainly with the
assumption that the centres would have had time to
put sufficient systems in place to ensure quality of
services by the time of the study (study was conducted
in December 2008).
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Chapter 2:
Review of Literature
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T he role of care centres has undergone a
paradigm shift in recent years. CCCs found
little mention in the national policies in
However, few assessments of the quality of care services
incorporate this multi-dimensional perspective. User
perspectives and even provider perspectives may not
the earlier years, and emerged primarily as NGO run be adequately represented in an assessment, which
centres providing respite care, palliative care, and focuses only on measures like cost effectiveness and
psychosocial support services. They find mention as efficiency (Lantis, 2002).
the only significant initiative in care and support in
NACP II, but here again, they were seen primarily as
stand alone centres which bridge the gap between
hospital and home based care. With the rollout of
the ART programme, however, the role of CCCs have
changed significantly, with the centres becoming
more integrated within the overall health system.
NACP III envisages CCCs as a hub around which
a range of services across the prevention to care
continuum are provided; this includes: ART Adherence,
OI Management, Positive Living, Palliative Care,
Social Support, linkages with services and positive
networks.
In 1990, Bruce and Jain developed a framework of
defining quality, which placed the client at the centre
of the system and defined quality as the way in which
a system responds to the clients and individuals. In the
2000 World Health Report, the WHO recognizes the
importance of client perspectives in assessing quality,
and lists responsiveness of the systems as one of the
intrinsic goals of a health care system. Two essential
components of responsiveness have been identified:
Respect for persons, which includes dignity, autonomy,
clear communication and confidentiality of medical
information; and Client Orientation which includes
access to social support, choice of providers, basic
CCCs have thus assumed a public health oriented role amenities and prompt services (Murray and Frenk,
in the health system, but continue to be an important 2000, Darby et. al. 2000).
interface between the client and the health system.
There is thus a need to be rooted in the community,
and be responsive to the needs of the clients. Quality
of services, and client satisfaction with quality is thus
an important measure to understand the effectiveness
of CCCs within the health system.
A health care system comprises of structures, processes
and outcomes, each of which are related to quality,
and can feed into measures of quality from different
perspectives. Of these three, structures have always
been associated with quality by providers, while policy
makers have focused on outcomes as a measure of
The term “quality” in health care services is a complex quality. But a critical measure of quality is the process
concept and different stakeholders view quality in of care and how the clients experience care. If a user
different ways. To the client, it may be the human has a good personal experience with the service, he /
aspect of care, to the provider, it may be the technical she will return despite negative outcomes. On the other
competence and availability of infrastructure, for the hand, despite good outcomes, bad processes/personal
program manager it may focus on logistics issues, experiences do not motivate users to return. Good
and the policy maker might be interested in cost experiences of care are thus crucial for motivating early
effectiveness of the facility (Iyengar et al, 2008). help seeking , timely diagnosis and treatment. Just as
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Medical services:
ART Adherence :
Positive prevention:
OI diagnosis and treatment
In-patient admission on initiation
Support positive attitude &
TB diagnosis and Treatment
ART registration and screening
Treatment counseling
Pain relief and symptomatic care
Follow up
Post - Exposure Prophylaxis
ART adherence education &
support
Identification of treatment
supporter
Verification of patient’s address
Education on nutrition, hygiene
Education & commodities for
positive prevention
disclosure of status
Promote correct and consistent
condom use
STI treatment
PPTCT for positive pregnant women/
spouse
Self care
Basic hygiene and sanitation
OI prophylaxis
Referrals of linkage to:
Watch for side effects/
complications
Health seeking behaviour
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VCTC/ PPTCT/ ART/ RNTCP
Defaulter tracing and follow-up
Men as partners
STI and FP clinics
Family Planning education/
referral/services
Govt schemes for nutrition or
shelter
NGOs, FBOs for other supports
Education :
Education on Home based
care:
Terminal care
Care of bedridden patients
Hygiene and sanitation
Infection Prevention
Home based kit and First aid
Community
Care
Care
Prevention
Centre
For Children
Linkage to schools
Address school drop outs
Provide Education materials
Youth/ Young adults :
Functional literacy
ABC messaging
Vocational training
Placement services
Shelter and Protection:
Linkage to or provision of
Respite home & destitute care
Extended family / Orphan care
Reintegration into family
Advocacy against Stigma
Participation in DAC meetings
Representation in EC of SACS
Include positive people in care
team
Village & School health committee
meetings
Linkages to legal support -
Property, workplace,
Schools/ Shelter
Nutrition:
Assessment and growth
monitoring
Nutrition Education &
Supplementation
Link to other food programmes
(WFP, CRS)
Mobilization - community
support for nutrition
Treatment of nutritional
deficiencies
De-worming
Psychosocial support including
counselling
Support self-disclosure & CT for
family members
Linkage :
Social security (insurance,
savings, IGP)
Social schemes (housing)
Life skills training
Family counseling
De addiction
Referral for psychological/
psychiatric treatment
Bereavement counseling
Support group meetings
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important as holistic care, care that goes beyond the “Patients usually cannot assess the technical quality
purely medical to encompass other psychosocial needs of their care; however, examining a hospitalization
across the different stages of infection is also crucial.
through the patients' eyes can reveal important
information about the quality of care. Patients are the
In the context of CCCs related to HIV care, it is important best source of information about a hospital system's
to focus on both client satisfaction and experiences of communication, education, and pain-management
care. While satisfaction is important, satisfaction by processes, and they are the only source of information
itself cannot be an indicator of quality, since satisfaction about whether they were treated with dignity and
is a complex function, mediated by client expectations respect. Their experiences often reveal how well
at and health status at that particular point of time. a hospital system is operating and can stimulate
The experiences of care are a more reliable measure of important insights into the kinds of changes that are
quality. As Cleary argues,
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needed to close the chasm between the care provided
and the care that should be provided” - Cleary, 2003 pp
33-39
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Chapter 3:
Methodology and
Findings
Overall Purpose of the study
the CCCs are expected to cater to PLHIV requiring pre-
ART/ART care and to monitor the initial side effects of
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The purpose of this study was to examine the quality ART. Centres with the highest and lowest patient load,
of services provided at community care centres (CCCs), in the sites managed by two partners were chosen. In
from the perspective of clients, family members, the case of sites managed by CBCI, the centres with the
and service providers, in order to arrive at a multi- highest and lowest patient loads were both located in
dimensional measure of quality of services at the the same state. For better representation, the centre
centre and to suggest methods of strengthening and with the lowest load was retained, and another centre
improving services.
with a higher load from a different state was chosen.
Specific Objectives
1. To understand the perspectives of people living
with HIV and family members on the quality of
care expected (Clients’ perspective)
2. To review whether PLHIV and family members are
satisfied with the quality of care received (Clients’
perspective)
3. To understand staff perspectives on the quality
of care they strive to provide (service providers
perspective)
4. To examine whether clients are provided services
in a friendly environment free of stigma and
discrimination (Clients’ and service providers
perspective)
5. To explore various issues that support or impede
quality in the provision of services at CCCs (Clients
and Service providers’ perspective)
Sampling Design
Selection of sites
Two centres each managed by CBCI and HLFPPT were
chosen for the study. Patient load was used as the
criteria for selection of study sites. The inpatient load
was used as a more stable measure of patient load, since
Based on these criteria, the following CCCs were
selected for the study: Karuna Shakti (Ahmedabad) and
Snehalaya (Midnapore) centres run by CBCI and Umang
(Varanasi) and Sathi (Ujjain) centres run by HLFPPT.
However, as Snehalaya (Midnapore) was unable to
host the study in the given timeframe, it was dropped
and the centre with next lowest patient load from the
CBCI managed CCCs, Jeevan Sagar (Muzaffarpur) was
taken.
Universe
Clients, Family Members, Centre staff (including those
who are direct care providers and management staff
of the NGO who are not in direct care provision but
who interact with patients and family members) from
the four different centres formed the universe of the
study.
Sampling
A convenience sampling methodology was adopted.
The clients and family members who were available at
the centre, during the five days when the interviewers
visited were taken as the respondents of the study.
Based on the average case load, a sample size of 10
inpatients per centre was fixed, which is about 20 % of
the lowest patient load, across the last three months.
Assuming that at least 50 % of the clients would be
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accompanied by family members, the number of family interviewed which includes cook, janitor, counselor,
members to be interviewed was fixed at 5 per centre. nurse, outreach worker, doctor and management.
Outpatient sample was fixed at 5, which is roughly 15 Among 24 CCC staff who were interviewed, 8 disclosed
% of the lowest outpatient load. In addition to this, an that they were living with HIV.
additional 10 interviews of each category inpatients,
outpatients, and family members was envisaged Profile of FGD Discussants
across four centres. The staff sample size was set at 6
per centre, 5 family members per centre.
In Ahmedabad, the FGD discussants included 5 clients
(3 and 2 women and 4 family members - all women).
However, there were some challenges. In some centres,
due to low case load, during the data collection period, In Varanasi, the FGD 7 discussants included 5 clients (2
this estimated sample size could not be reached. Centres women and 3 men) and 2 family members-1 male and
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like Varanasi and Ujjain had a higher load of outpatients 1 female.
compared to in-patients, during this period. Many In Ujjain, the FGD 13 Discussants included 10 clients
outpatients had also at some time accessed in-patient (4 women, 6 men), and 3 family members -1 woman
services. Therefore, in these centres more outpatients and 2 men.
than the required sample were covered, in lieu of in-
patients. In most of the CCCs, family members were not
always present with the client, especially if the client
was not symptomatic.
In Muzaffarpur, the FGD discussants included 19
women and 9 men which included both clients and
family members.
Based on these practical difficulties, the study finally
covered 80 clients (in-patients and outpatients
combined), 25 family members and 24 service
providers. Due to low in flow, and limitations of time
representative sample of male and female, rural and
urban residents and clients on ART / not on ART could
not be systematically adopted.
The centre visits were as follows:
The staff FGD included all the staff who were available
at the centre, during the FGD. Doctors, who were
part time were not part of the discussion, but nurses,
counselors, ORW and other staff were included.
Methods of Data Collection
The study involved collection of both quantitative and
qualitative data.
i. Ahmedabad 26 November–1 December 2008
ii. Varanasi 2 December–6 December 2008
iii. Muzaffarpur 15 December– 9 December 2008
iv. Ujjain
15 December–19 December 2008
Respondent Profile
Client, 34 women and 46 men were interviewed. 44
were from the rural areas and 36 from urban areas. 63
clients were on ART while 16 were not on ART. One
client had been on ART but had discontinued.
Family members
25 family members interviewed, 14 were women and
11 men; 4 disclosed that they were positive.
Staff
Staff representing different roles at the CCC were
A Client Satisfaction Scale was developed in order to
quantitatively assess client satisfaction with the CCC
across 9 dimensions of quality. They include symptom
relief, responsiveness, emotional support, stigma
and discrimination, confidentiality, staff competence,
treatment education, structured inputs/training and
relevance of inputs and services. These domains have
emerged from four overarching themes of Respect,
Relief, Control and Comfort, which have been identified
as important by clients in the health system (Iyengar et
al, 2008). In addition to this quantitative measure, in
depth interviews were conducted with clients, family
members and service providers in order to understand
their expectations from the centre and their experience
of care..
Two focus group discussions were held in each of the
four centres:, one with clients and family members,
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and the other with service providers. These discussions The focus group discussions were also transcribed and
explored their perceptions of quality in care services the conclusions of the group on expectations from the
for people living with HIV, prioritizing 5-6 dimensions, centre in terms of quality parameters, ranking of these
rating their own centres on the different dimensions and their rating of the centre on these were drawn
and exploring areas of improvement.
for analysis. The FGDs also yielded suggestions for
Data Analysis
improvement.
In view of the small sample size, only Microsoft Excel
The quantitative data from the Client Satisfaction Scale was used for the data analysis, with manual coding.
across the four centres was consolidated and analyzed
for overall rates of satisfaction across the centres. This Limitations
scale also captured satisfaction on nine individual The major limitations of the study are:
dimensions.
17
• The client satisfaction scale and the in depth
The in-depth interviews were recorded and transcribed
and the emerging themes across the different
domains were identified. Different sets of responses
were identified in the different domains and assigned
interviews were constructed to include family
participation, but most centres did not encourage
family accompaniment. So family perspective was
limited.
a code, and the interviews were further coded along • Due of poor in-flow at one centre, patients who
these lines for analysis.
had earlier accessed CCC were called in and so,
there could be selection bias.
Key Findings
3.1 Socio-demographic Profile of the
Clients Interviewed at the Centre
Of the 80 clients interviewed, 34 were women and 46
were men. The representation of men was consistently
a bit higher in all the centres. In Muzaffarpur there were
significantly less women: 12 male clients as opposed to
only 7 female clients.
Table 1: Female Male distribution
Location
Ahmedabad
Muzaffarpur
Ujjain
Varanasi
Total
Female
9
8
9
8
34
Male
11
12
13
10
46
Both rural and urban clients were represented. Clients
from the same city were largely represented in the
outpatient category, but clients from other urban sites
were also present. Since the centres were seen by most
clients as a shelter to complete the ART initiation and
stabilization, there was higher rural representation
in the in-patient category. The clients interviewed at
Ahmedabad were largely urban while, in Muzaffarpur,
most of the clients interviewed were from the rural
areas.
Table 2: Urban Rural distribution
City
Ahmedabad
Muzaffarpur
Ujjain
Varanasi
Total
Rural
4
19
10
11
44
Urban
16
1
12
7
36
22 % of the clients reported that they have had no
schooling. This was very high in Ujjain and Muzaffarpur.
Overall, nearly one third of the clients have had
primary schooling. Nearly a fourth have had secondary
schooling and a few have completed graduation or
more. . In Ahmedabad all clients had primary level
of education, and 55 % of the clients had gone up to
secondary school or higher. This needs to be seen in
the context of the overall development of the state
and the location of the CCC.
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Table 3: Distribution According to Education
Location
Ahmedabad
Muzaffarpur
Ujjain
Varanasi
Total
No school
4
11
2
17
Primary
9
6
4
7
26
Secondary
9
3
3
5
20
Graduation or
higher
2
1
2
2
7
No response/
not asked
0
5
2
2
9
Occupationally, the clients held a variety of jobs.
Nearly 1/8 of them were agricultural laborers, another
FIGURE 1: Duration of contact with the centre
18
1/8 were housewives and another 1/8 were currently
unemployed.
6
12
In terms of duration of contact with the centre, more
13
than half the clients have been in contact with the
centre for a year or less. Nearly ¼ of them had been
15
in contact with the centre for less than one month
15
while nearly 1/8 of the clients had been in contact with
the centre for three to four years. The last, pertains
mostly to Ujjain and Ahmedabad, both of which were
less than 5 days
less than one year
3 years or more
functioning as care centres, before coming under the
one month or less
1-2 year
management of CBCI and HLFPPT.
Table 4: Duration of Contact with Centres
City
Ahmedabad
Muzaffarpur
Ujjain
Varanasi
Total
less than 5
days
1
2
1
2
6
one month or
less
3
5
5
13
less than one
year
2
5
2
6
15
1 -2 year
0
3
10
2
15
3 years or
more
4
0
7
1
12
Overall, there is good co-ordination with the ART
centre, for referral of clients. The Government ART
centre was the major source of referral for most of the
clients in all centres. In Ujjain, however, centre staff as
well as government centres other than ART centres
had contributed the bulk of referrals. This is also
because; in Ujjain the CCC is not directly linked to an
ART centre. The nearest ART centre is in Indore, which
is about 70 kms away from Ujjain, and few referrals
come from there, since this ART centre is more likely to
refer people to the CCC in Indore itself. More referrals
come from the ICTC at Ujjain, the government hospital
and also through the outreach activities of the centre
staff.
FIGURE 2: Source of referral to the Centre
10
14
41
2
5
8
ART centre
Government Centre
other than ART
DLN
NGO
Centre Staff
NR
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Table 5: Centre-wise Source of Referral
Location
ART centre Government
DLN
Centre other
than ART
Ahmedabad
13
2
0
Muzaffarpur
10
0
0
Ujjain
4
6
3
Varanasi
14
0
2
Total
41
8
5
NGO
Centre Staff
NR
1
3
1
0
4
6
0
6
2
0
1
1
2
14
10
Most of the clients who were accessing services were on ART in all the centres. Overall nearly 78% of the clients
were on ART. One of the clients reported that he was on ART but had stopped as the ART centre is far.
19
Table 6: Distribution according to ART
City
Ahmedabad
Muzaffarpur
Ujjain
Varanasi
Total
On ART
17
19
13
14
63
Not on ART
3
1
8
4
16
On ART but stopped
0
0
1
0
1
3.2 Defining Quality of Services
Across different centres, one of the major dimensions
of quality identified by the community was adequate
medicines and good medical consultation. This was
expressed in different ways in the centres, some
groups identified it as the availability of medicines
and doctors, others identified it as symptom relief and
improvements in health status. In one of the groups,
the community also specifically identified that the
doctor has to behave well with the patients.
Knowledge and awareness about HIV infection and
treatment was another major dimension of care
identified across all centres. In three of the four centres
this was identified as a major dimension of good
quality services.
Emotional and social support was another major
dimension, which was identified across the centres,
although each community has articulated this
differently. While the community in Ahmedabad felt
that emotional support was required, in Ujjain and
Muzaffarpur, the communities felt that the centre
must provide encouragement and positive thinking. In
Varanasi, the community has also identified social and
economic support as an additional dimension.
Respect and dignity was another important dimension
identified in all the centres. The communities articulated
that to them, a critical dimension of quality was being
treated as human beings and as equals at the centre.
The staff too, to a large extent, identified similar
dimensions of quality of care. Staff criteria for care
included care and concern, treatment support,
medical support, counseling, treatment education
and nutrition support. Some additional dimensions
of quality identified by staff were related more to
the internal functioning of the centre. For instance
in Ahmedabad and Muzaffarpur, staff identified team
work and leadership as essential for good quality.
Staff were more articulate about the multiple kinds
of medical needs of the People Living with HIV and
were also more aware of the limitations of the centre.
The staff in Muzaffarpur, for instance, had identified
a continuum of care as a critical part of quality. In
Ujjain staff had identified the lack of many medical
facilities including basic testing and facilities for OI
management as a critical shortcoming of the centre.
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Holistic care came up in discussions pointing out Differences in levels of satisfaction were reported by
that care was more than just medical treatment, clients, family members and staff within each centre.
and symptom control has been identified in two Except that in Muzzafarpur and Ahmedabad, the family
of the centres, while in the third centre; this idea is members appeared less satisfied than clients.
articulated as humanity.
The overall satisfaction as a measure was dependent
3.3 Experience of Care Services and
Satisfaction with them
on several factors. Firstly, the physical condition of the
client (i.e., symptomatic or asymptomatic) is known
to influence the overall satisfaction. If the client is
The overall sense of satisfaction with experience and symptomatic, a very different response is sought
services at the centre is high, across all centers. ,. 82% from the centre and family members’ expectations
of the clients, 75 % of the family members and 83 % are different. In a facility that largely caters to
20
of the service providers reported high level of overall asymptomatic persons admitted for ART stabilization,
satisfaction. 17.6 % of the clients, 13 % of the family family members of symptomatic patients are more
members and 13 % of the service providers reported worried and uncertain.
moderate levels of satisfaction.
The other factor influencing satisfaction was the sense
FIGURE 3: Level of overall satisfaction across different
categories
of personal well being as perceived by the family
members themselves. Do they have a place to sleep,
100
80
70
69
50
40
30
20
10
0
High
Moderate
Low
proper toilets to use and do they get bedding or hot
water in winter? Are they involved in the treatment
and do they have a role? Is someone talking to them,
explaining the condition of the patient and the action
taken on the symptoms? Is their own fear, grief or loss
addressed?
Another factor influencing satisfaction was the quality
of other services in the area. Where the ART centre and
the positive networks were reaching out well to PLHIV
and their families, the expectations were found to be
higher from the CCCs. This was seen in Ahmedabad.
Clients
Family Members Staff
Clients N = 80 Family Members N = 25 Staff N = 24
The socioeconomic status of the clients lead to their
expecting more from the CCC in the area of food and
The largest number of clients reporting high satisfaction
was in Ahmedabad (87.2%). Even in Muzzafarpur,
where numbers reporting satisfaction was a bit lower,
it touched 77.2%
Similarly, a high level of satisfaction was reported
by 89 % of the family members in Ujjain, whereas in
Muzaffarpur, only 63 % of them reported high level of
client satisfaction.
There was a wider range across centres in the case
of service providers. 92.5 % of the service providers
in Varanasi reported high level of client satisfaction,
whereas in Muzaffarpur it is only 66 % of the service
providers reported high level of client satisfaction.
FIGURE 4: Respondents expressing overall high satisfaction, by
centre and category
100.0
90.0
80.0
70.0
60.0
50.0
40.0
30.0
20.0
10.0
0.0
Ujjain
Varanasi Ahmedabad
Muzzafarpur
Ujjain
Clients n= 22,
FM n=6,
Staff n=6
Varanasi
Clients n=18,
FM n=5,
Staff n=5
Ahmedabad
Client n=20,
FM n=7,
Staff n=5
Muzaffarpur
Clients n=20,
FM n=5,
Staff n=7
Clients
Family Members
Staff
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livelihood security. These are outside the current scope providers identify shelter as a critical need while and
of the CCCs. This leads in turn to some dissatisfaction in only 17 % of clients, 8 % of family members and 20 %
clients. On the other hand, a deep sense of gratitude to of service providers spontaneously identified medical
whatever was being provided was seen in CCCs where consultation as one of the critical needs met by the
the socioeconomic status was low, and this forms a centre.
critical assessment of services.
Clients and family member largely reported that the
3.3.1 Facilities
quality of food is good, and nutritious food is provided
at the centre. Nearly 75 % of the in-patients and 50
When questioned about facilities received in the % of the outpatients expressed an opinion on the
centre, the respondents spontaneously identified food, of which 97 % of the in-patients and 88 % of the
food, shelter and medical consultation as the key outpatients felt that the food was good and nutritious.
services at the centre, which meet their critical needs. Some of the respondents also shared that the food in
21
The question was open ended as to what services the centre was better than the food at home:
they receive at the centre. The spontaneous responses
without further probing is reflected here. The purpose
was to see which of the services they recalled first. This
“I like the food available at the centre. I don’t get food like
this at home”. An inpatient in Varanasi
response aimed to look at the purpose of the CCC and
which of the facilities/services appeared to meet a
greater need.
“My father is feeling very comfortable here, he likes the
food here and is actually eating here, he never eats at
home” A family member in Muzaffarpur
FIGURE 5: Critical needs met by the centre spontaneously
identified by respondents
60
However, some of the respondents also felt that while
the food was good and nutritious, the taste was not
always to their liking.
50
“Khana, theek hi lagta hai, Bimar hain kya denge, chat
thodi denge. Bimari ke jaisa khana denge. Hum samjten
40
hain, sab koi thoda samajta hai. Chatpata mangte hain
30
kahten hain namak kam hain, theek nai hai…” (“The
food is good. What will they give sick people; as if they will
20
give chat! They provide food which is right for the illness. I
understand, others don’t, they want spicy things, they say
10
salt is less, it’s not ok”) An inpatient in Muzaffarpur
0
Clients
Shelter
Family
Food
Staff
Medical consultation
These responses are not an assessment of services,
rather what the client identified as the key services.
These responses are naturally mediated by their
expectations of the centre as well as their socioeconomic
and clinical status. Food was more commonly identified
among the clients and family members. 57 % of the
clients, 46 % of the family members and 17 % of the
service providers identify food as one of the critical
needs which was being met by the centre. 17 % of the
clients, 23 % of the family members and 25 % of service
Respondents placed a high value on the environment
of the care centre. 92 % of the clients and 97 % of
the family members reported that the atmosphere
at the care centre was positive. Descriptions of the
environment ranged from‘shanth vathavaran’(peaceful
atmosphere), ‘mann ko shanthi milti hai’ (Gives peace
of mind) and ‘ghar jaisa mohol hai’ (its like home).
Respondents also felt that by coming to the centre
and meeting other people with similar problems gave
them courage to handle their lives. Moreover, across all
centres, the respondents reported that the staff cared
for them and genuinely reached out to them, which
gave them a great feeling of comfort.
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Yahan to yeh acha lag raha hai, ki sab jo doctor log hain, Satisfaction with space varied across the different
sister log hain, bahut achcha se, prem se apan problem centres. For instance in Muzaffarpur, all the clients
sun lete hain. Ekdam family ke tarah hain; ghar pe 24 and family members who responded to the question
ghanta hain; achcha vyavahar hai. Kisi se betami se said they were satisfied with the space. In Ahmedabad
baat konu bhi, konu patient bhi hai, to nahin, jaisa ghar however, 46 % of the clients and 24 % of the staff felt
ka ma baap baat karte hain, vaise hi hain (“What I like that although the structure was OK, there was scope
here is that everyone, doctor sister, everyone listens to our for improvement. In Varanasi, 30 % of the clients and all
problems with love. It is very much like family; people are the family members who responded to this question
available 24 hours. No one talks to anyone rudely; it is like felt that there was scope for improvement in the
how parents talk at home”) - Client at Varanasi
structure. Dissatisfaction with the structure primarily
related to specifics such as lack of adequate toilets or
22
“I like the way madam speaks to me and gives me good
counsel. I forget my sorrows when I come here…first I
their distance from the wards in Ahmedabad. The lack
of separate male and female wards in the centre was
thought only my child had the problem... now I feel my also a concern. In Varanasi, a primary inconvenience
problem is nothing… I see people who have so many was that one of the wards was on the first floor, and
problems. Here I am just looking after one person… there some of the clients found it inconvenient to constantly
are families with husband and wife infected, mother climb the staircase.
and child infected…everybody is infected. When I can’t
look after one child, how can they manage 4 people?” (A 3.3.2 Perceived improvements in health
family member in Ahmedabad)
“Once I started working here, I found that they are like
anyone else and that they are people with great sorrows
and that they need support. What I do is feed them well. I
don’t just cook the food. I make them eat. I tell jokes and
get them to laugh and then eat a little bit” - the cook at
the Umang Varanasi care centre
Perceived improvements in health status of the clients
was high, with 88 % of the clients, 80 % of the family
members and 92.3 % of the staff reporting high level of
satisfaction on this domain. Satisfaction was highest in
Ahmedabad, where 97 % of the respondents reported
high satisfaction with improvement in health status,
and lowest in Muzaffarpur, where only 69 % of the
Clients and family member have generally not been
very concerned about the space and structure of the
centre; over 60 % of the clients and 50 % of the family
members have expressed no opinion regarding the
clients reported high satisfaction. This response has to
be understood in the context of the type of patients
admitted. In Muzaffarpur, many symptomatic patients
stay at the centre, till they can be placed in the district
structure. Some felt that space was not their priority.
“Marij ko in baton se kya lena dena? Woh to sthapak
FIGURE 6: Respondents reporting high satisfaction on
improvements in health status, by category and centre
dekhenge. Hame to thik hona ha aur yeh jaroori hai 120
ki saaf suthra ho” (What do patients have to say about
building and all. That only the management will see. We 100
Ujjain
Clients n= 22,
FM n=6,
Staff n=6
just need to get well, and it’s necessary that it should be
clean). A client in Muzaffarpur
Of those who did respond to the question, 65 % of the
clients were satisfied with the space, whereas only 38
% of the family members were happy with the space.
Staff reported a higher level of satisfaction, with 56 %
reporting satisfaction. 10.2 % of the clients, 30.8 % of
80
60
40
20
0
Ujjain
Varanasi
Ahmedabad Muzzafarpur
Varanasi
Clients n=18,
FM n=5,
Staff n=5
Ahmedabad
Client n=20,
FM n=7,
Staff n=5
Muzaffarpur
Clients n=20,
FM n=5,
Staff n=7
staff and 16.7 % of the staff felt that there was scope for
improvement in the structure.
Improvements in
Health Client
Improvements in
Health Family Member
Improvements in
Health Staff
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hospital, whereas in Ahmedabad, they are immediately complete symptom relief compared to in-patients
referred to the Civil Hospital.
(39.5 % outpatients compared to 24.5 % in patients).
Similarly more in-patients than out-patients reported
On the whole, staff reported higher level of client lack of symptom relief at all (13.5 % in patients, against 7
satisfaction on this domain, compared to either % outpatients). Many outpatients were retrospectively
clients or family, and in three of the centres (except reporting on the time they had felt better and been
Muzaffarpur), all the staff respondents feel that there discharged from the centre, whereas, in patients
has been an improvement in health status of the reported more on current symptoms and their relief.
clients, after coming to the centre. The widest variation The duration of contact with the centre also seemed
in perceived improvement in health status, between to influence the experience of symptom relief. The
the clients, family members and staff was seen in patients who complained of no symptom relief had
Varanasi, 100 % of the staff report improvement, as
opposed to only 83.3 % of the clients and 80 % of the
less than one month contact with the centre. 21.5 % of
the clients who had less than one month contact with
23
family members. In Muzaffarpur, a greater number of the centre said that symptoms had not been relieved,
clients report satisfaction on this domain, compared to compared to 7.7 % of the clients who had more than
staff (90 % of the clients, as opposed to 71.4 % of the one year’s contact with the centre.
staff ).
Again this data has to be seen in the context of type
of patients admitted, the type of patients referred out,
the needs of patients referred out and the previous
experience of staff in care of such patients. Where
the organization had earlier provided a wider range
of services, those who had benefitted from them,
This data is important to understand the nature of
client satisfaction reported by clients and how it
needs to be seen in context and longitudinally than
at any one point of time. However, the CCCs will still
need to review whether better symptom relief can be
achieved.
reported greater dissatisfaction than those who were A gender difference in the number of clients reporting
not exposed to that earlier period. This was seen both treatment relief was observed, with men reporting
among users, family members and staff. There was a greater symptom relief compared to women. 32 % of
clear voice regarding this in Ahmedabad, Varanasi and the men reported that symptoms have been relieved,
Ujjain.
compared to only 14 % of the women, and 10.9 % of
While earlier the focus was on access to treatment,
now with ART availability and the resurgence of hope
and life there is now a greater demand for support for
the women reported no symptom relief, compared to
only 3.2 % of the men. 36.1 % of the men and 26.4 % of
the women reported that they were asymptomatic.
the means of living. This could be nutritious food or
more suitable livelihood options, which the current
model does not have scope for. This leads to a sense of
FIGURE 7: Gender and experience of symptom relief
35
frustration and dissatisfaction
30
20 % of the clients were actually asymptomatic. In
relation to the rest, the in-depth interview revealed
that experience of symptom relief was not universal
among the clients or family members. While all the
staff felt that complete symptom relief was achieved
at the centre, only 46 % of the clients and 42 % of the
family members reported complete relief. 14 % of
the clients and 21 % of the family members actually
reported that the symptoms had not been relieved
at all. Higher percentage of outpatients reported
25
20
15
10
5
0
Complete Relief
Partial Relief
Men
Women
Men - n=30 Women - n=25
No Relief
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3.3.3 Staff responsiveness to patient needs a service. In the in-depth interview only 2.6 % of the
clients spontaneously identified counseling as one of
90 % of the clients, 92 % of the family members and 96 the services they received at the centre.
% of the staff reported high level of client satisfaction
with staff responsiveness to different needs. The data Similarly on the question of staff responsiveness to
from the in-depth interviews largely corroborated this clients, most responses were regarding the physical
trend, at least in terms of medical needs. Among the pain or at the level of everyday needs (serving good
respondents who gave a specific answer when asked food or calling the doctor) On most probes, they did
about staff responsiveness, nearly 75 % of the clients not bring up an interaction or an instance where the
and 70% of the family members responded that the staff had spoken to them or responded to their grief
staff were responsive, whereas, all the staff responded or distress. Only 30% of clients and 43% of family
24
that they were responsive.
members picked up the cues on probes. Of them the
majority, (71% of clients and 64% of staff ) strongly felt
Systems in the centre were also reported to be quick and that staff were not able to respond to emotional needs
efficient by most of the respondents. Of the 51 clients and they could not share their deeper emotional
and 17 family members who responded specifically on problems with them.
this probe, nearly 92 % of the in-patients and 78 % of
the outpatients reported quick and efficient systems. “main apna dukh to sirf apni patni se batutha hun, idhar
Longer waiting time as a problem was reported more koi kya samje” ( I share my grief only with my wife, who
by outpatients, than in-patients, but it was a minority will understand here): A client in Ahmedabad who
opinion. Family members also largely reported quick shared his problems of constant diarrhea and the
systems, with 94 % responding that the process was social difficulties that he has at his workplace and how
smooth and systematic.
distressed he is about it; “
FIGURE 8: Systems of admission and consultation
120.0
100.0
80.0
Inpatient n=23
Outpatient n=28
Family n=17
60.0
40.0
20.0
0.0
Systematic and quick
Inpatient
Outpatient
Tedious waiting
Family Members
3.3.4 Emotional needs and support
Counseling and emotional support emerged as one
of the gaps in the services provided at the centres.
Most clients could identify food, shelter or medical
support much more easily than emotional support as
“idhar kisko phursat hai baith ke baat karne ki, main
kissise nahin bolti” (Who has time to speak here , I don’t
share my sorrows with anyone): A woman in Varanasi
who wept bitterly about the daughter in law she lost
with whom she was very close and is at the centre with
her son whose condition is very bad.
“main kiss se bolun ghar ki baat, kaise bolun, andar hi
andar daba leti hoon” ( to whom can I tell my domestic
issues how can I tell, I just suppress it within me): A
woman who is HIV negative and is having a lot of
problems with her spouse and in laws, but is not sure
how much she should talk about it with staff
“Jab se malum hua hai, woh to kaam pe nahin jate;
mujhe poora din bahar rahna padta hai kamane ke liye,
saas sasur bachon ko dekh lete hain ….., par aaste aaste,
bachon ko mujh se door kar liya hai .. meri baat kiss se
kah sakti hoon“ (Ever since his diagnosis was known, my
husband has stopped working; I need to be out the whole
day working, my in laws take care of my children, but
slowly they have separated me from my children whom
can I tell all this?): A staff at one of the centres.
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There have been many cases who have lost sons, 30% having started it less than a month ago, this
wives, husbands and needed bereavement support information may have limited validity. Attempts to
and support to work through grief. Also there were develop individualized adherence plans and strategies
many marital and family conflicts which had added was not seen at any of the centres.
to the stress and burden of many clients and family
members.
Treatment Education for the clients happened mostly
at the ART centre. However, the CCC served as a point
Most did not even expect to find emotional support where this information was reinforced for the clients.
here, so even the lack of counseling and emotional 64.6 % of the clients and 46.2 % of the family members
support was not clearly articulated by the respondents reported that the information was repeated to them,
as a missing piece, but during this study they when they were at the centre.
appreciated the time the interviewers provided and
25
repeatedly stated that they could talk about their 3.3.6 Positive living and positive prevention
sorrows for the first time.
Focus on positive living and life after infection was
This is substantiated by a linked question on the client not very strong. Systematic treatment education was
satisfaction scale which asked about reduction of largely absent. In the in-depth interview only 3.8 % of
worries and anxieties after coming to the centre. 29% the clients and 11.5 % of the family reported that there
of the clients and 44 % of the family members reported were regular and planned inputs in the centre for them
no significant reduction in worries and anxieties after on positive living. Nearly 82 % of the clients and 53 %
coming to the centre. This particular finding has, of the family members reported that although they
however, to be viewed in the context of the condition have received general advice on eating well or keeping
of the client, his/her other social problems and the their surroundings clean, information was not specific
duration of the stay at the centre. The numbers being nor was it personalized for individual patients.
small, it did not lend itself to further interpretation.
The relevance of these inputs was also questioned by
3.3.5 Treatment education and adherence
some of the respondents. On the client satisfaction
scale, the majority of the clients and family members
Most of the clients reported that they were adhering reported high satisfaction with the relevance of inputs.
to the prescribed treatment regimen. Most of the However, when probed in the in-depth interview, there
respondents were informed about the importance of was a sense of dissatisfaction with the inputs, with 20.5
complete adherence, especially with ART. Most could % of the clients and 14 % of the family members said
also understand the importance of adherence.
that most of the inputs were not relevant to their lives.
“The sister has told us that we need to take the medicine
everyday. Even if we miss it for one day, all the previous
efforts will be wasted”, A client in Ujjain
There was actually a sense of frustration at not being
able to follow much of the advice for positive living, for
instance, taking nutritious food.
“I tell them they have to take the medicines regularly,
this is very expensive medicine which the government is
buying and giving to them. Just because they get it free, it
does not mean they should not value it”, A Staff in Ujjain
“They said we must eat well… what to eat? Nothing, they
have not told us specifically, but I suppose fruits and milk
and eggs… but where can we afford all that. I live with
my in laws... as it is we are a burden on them... I cannot
ask for special food”: A Client in Ahmedabad.
Most of the clients reported that adherence has now
become a habit with clients and family members
remember to take it constantly. However, since 55%
of them have started ART less than a year ago with
Comprehensive knowledge and practice of safe sex
was also very low, with most of the clients reported
only rudimentary knowledge about condoms. Even
here, the source of information was usually outside
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FIGURE 9: Knowledge and practice of safe sex
70.0
60.0
Clients n=56
Staff n=16
50.0
of condoms, only 19 % of the women who responded,
reported that their partner uses condoms, as opposed
to 28.6 % of the men. Again, 14.3 % of the women
reported no knowledge of safe sex, compared to 8.6
% of the men.
40.0
3.3.7 Networking with external services,
30.0
groups etc.
20.0
20.0
Nearly 2/3 of the clients and family members did
0.0
Advised abstinence
Heard about
Use condoms
No Knowledge
not specifically comment on networking with the
external services, specially the ART centre. Of those
26
condoms
who did, networking with other services like the ART
Clients
Staff
centre was largely reported to be good, in all the
the care centre, either in the ICTC centre, ART centre
or even mass media like television or radio. Condom
demonstrations were not done at the centre, neither
were condoms stocked. The 58 clients who responded
on the probe about safe sex practices, only 24 %
centres. Around 95 % of the clients and 83.4 % of the
staff reported that linkages with the ART centre was
very good. Among the family members, a slightly
lower level of satisfaction was seen, with only 66.4 %
reporting that the system was good.
reported that they use condoms. 10.3 % reported that Many of the respondents felt that the good co-
they have no knowledge of safe sex practices and ordination with the ART centre was one of the things
6.9 % reported that they are practising abstinence as they value at the centre, since it makes it very much
advised. Some of the staff also reported abstinence easier for them when they come to collect the ART
as the preferred strategy of safe sex, of the 16 who medicines. Respondents also view the centre as
responded to the probe about safe sex, nearly 12.5 a temporary shelter for those who traveled long
% reported that it was mostly abstinence which was distances to collect ART. Clients specially valued the
advised in the centre, and only 25 % felt that clients fact that the centre staff personally take them to the
were regularly using condoms.
ART centre, when they come for CD 4 testing or for
When the data from the client was examined gender
wise, it was seen that women have lesser knowledge
about safe sex practices compared to men. While a
greater percent of women reported basic knowledge
taking ART. (See Annexure 1)
“Main raat ko yahan aake rukti hoon, ye aasan hai. Nahi
toh akeli aurat ko log doosri nazar se dekghte hain, isiliye
yahan aana theek hai”
FIGURE 10: Gender and knowledge and practice of safe sex
70.0
60.0
Female n=21
Male n=35
50.0
40.0
30.0
20.0
10.0
0.0
Abstinence
Rudimentary
Knowledge
Female
Condoms
Male
No Knowledge
FIGURE 11: Centre linking clients to positive groups
100
90
80
70
60
50
40
30
20
10
0
Ujjain
Varanasi
Ahmedabad Muzzafarpur
Ujjain
Clients n= 32,
FM n=6,
Staff n=6
Varanasi
Clients n=18,
FM n=5,
Staff n=5
Ahmedabad
Client n=20,
FM n=7,
Staff n=5
Muzaffarpur
Clients n=20,
FM n=5,
Staff n=7
Clients
Family Members
Staff
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(I usually come here and stay at night, It is convenient. in most cases. However, in some of the centres, there
People see you differently if you are single woman. It’s was an element of subtle coercion in linking up with
much better to come here). A client in Ujjain.
the positive centres. In Ujjain and Ahmedabad, one
CCCs have also been instrumental in connecting many
of the clients and family members to the positive
networks, as a source of support. Linkages and co-
ordination with the positive groups was fairly good.
More than half the clients and half of the family
members reported that they have been connected
up to positive networks by the centre. However, there
of the main reasons cited by people for attending the
meetings was that regular attendance at the meetings
was necessary in order to get rations from the centre.
Thus, nearly half the respondents, when questioned
about the perceived benefit of attending meetings
respond that they get provisions if they attend
meetings.
are some sharp variations across the centre. In Ujjain, 3.3.8 Respect and absence of stigma and
for instance, networking with the positive groups discrimination
27
was reported by 86 % of the clients and 87 % of the
family members. In Muzaffarpur, only 10 % of the All the centres have succeeded in maintaining a
clients and none of the family members reported any stigma and discrimination free environment. 98 % of
kind of linkages with the positive networks. This was the clients and 96 % of the family members reported
also directly related to the nature and the existence of a complete lack of stigma and discrimination in the
the DLN in the city. In Muzaffarpur, the only positive centre. In addition to this, when probed in the in-depth
network in the vicinity is in Patna, which is 90 kms away. interview, 73.4 % of the clients and 73.1 % of the family
In Ujjain, the centre has good linkages with the Ujjain members reported that they are treated with a lot of
Network of Positive People as the monthly meetings respect at the centre.
of the network are held in the centre itself and many
of the clients reported that they combine the monthly
meeting, with a visit to the doctor.
However, even though the centre has made an
attempt to link the clients with positive groups, not
“There is absolutely no discrimination here. There is
sensitivity to patients. There is acceptance. From the
doctor to the cook, I think they are all respectful” A client
in Ahmedabad
all clients have become a member of positive groups This was resonated in all the centres, where clients and
or are in touch with them. Of the clients who reported family members vehemently denied any stigma or
that the centre has helped them to network with discrimination at the centre
positive groups, nearly 40 % reported that they are not
attending meetings, 26 % reported that they were not 3.3.9 Confidentiality
interested in attending the meetings, while another 14
% reported that they were still considering whether to
attend or not.
The issue of confidentiality and client conviction about
the extent of confidentiality maintained at the centre
was complex. On the client satisfaction scale, more than
“Meetings hote hain, lekin main nahi aata. Maine bola 2/3 of the clients and nearly 2/3 of the family members
na, mujhe ye sab achcha nahi lagta, sabse baat karna, rated confidentiality high at the centre. Between the
sabse milna. Main kabhi nahi aata”
centres, assurance of confidentiality was highest in
Ahmedabad (88%) and Varanasi (88.9%) and lowest
(Yes there are meetings, I don’t like to come to them. I in Muzaffarpur (70 %). Among family members, it was
told you., I don’t like to meet everyone and talk, so I never highest in Ujjain (85.7 %) and lowest in Muzaffarpur
come to the meetings) A client in Ujjain
(33.3 %).
Support, courage and a feeling of comfort in talking
and sharing with other people with similar problems
were benefits perceived from the positive networks
However, confidentiality itself meant different things to
different respondents. In the in-depth interview, only
26.5 % of the clients were completely assured about
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FIGURE 12: Assurance of confidentiality in the different centres
3.5 Family Involvement
100
90
80
70
60
50
40
30
20
10
0
Ujjain
Ujjain
Clients n= 22
FM n=6
Varanasi
Clients n=18
FM n=5
Ahmedabad
Clients n=20
FM n=7
Muzaffarpur
Clients n=20
FM n=5
Varanasi
Ahmedabad Muzzafarpur
The clients, family members and staff identified working
with families and building family support as one of the
important dimensions of quality of care. This emerged
as one of the significant gaps in the services.
FIGURE 13: Involvement of family members in care
50
45
40
35
30
28
Clients
Family Members
25
Clients n=80
20
FM n=25
the confidentiality at the centre. Family members 15
Staff n=24
surprisingly reported a higher number, with about
53 % saying they were satisfied that the centre would
maintain confidentiality. Nearly 10 % of the clients
and 7.7 % of the family members reported that they
were not particularly concerned about confidentiality,
10
5
0
General Advice
Clients
Systematic
Education
Family Members
Concerns of family
members addressed
Staff
since the status was anyway known in the family and
community.
Many of the clients and family members felt that they
did not know about confidentiality as almost 30% had
been in touch with the centre less than a month. Few
shared that just like other people’s examples were
shared with them by the staff, their own examples
may possibly be shared with other people. But for
many people, since within the centre their status was
anyway known and the centre itself was too far from
their homes, confidentiality was not viewed as a major
issue..
The CCC guidelines impede to a certain extent the
involvement of family members. Some centres are
forced to turn away family members, even if the patient
desired for the family members presence since the
guidelines do not provide for stay of family members.
Sometimes when family members who are positive
accompany the client, they were also admitted to the
centre, so that they can get some respite care for the
duration of their stay.
“DLN person told they will not keep any family member
here so I did not call any body. Staying alone was very
difficult, even to go to toilet I was feeling weak….” Client
3.4 Staff Competence
in Varanasi
About 88 % of the clients and 71 % of the clients
reported that they are highly satisfied with the
knowledge and skills of the staff.
The interviewers’ impression on this is that the
respondents found the staff to be kind and caring
and the staff were grateful for that. They did not wish
to comment on their competence. Besides, most of
them could not really comment on their technical
competence. It was only those staff and clients that
had been part of positive networks could comment
frankly on this. They felt that more capacity building
was necessary for all categories of staff.
“They stop my wife from coming here; she stays in the
shelter outside. At night I requested the sister that she is a
lady so allow her to come inside, so they give her bed if it is
available, otherwise she spreads her blankets on the floor
and sleeps .I think that the rules should be there that the
family members stay along with us. It will help us when
we need to talk, when we need to take decisions, I can talk
about the things in my heart to my family (wife), I cannot
tell others” Client in Muzaffarpur
The centres lacked a systematic plan for involving
family members in care. Family members who were
themselves positive had received some information
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and inputs as clients in the centre, but to large extent
family members only received general advice on how
to care for the clients.
The role of family members as carers was also not
explored anywhere. There was no strengthening
of their own capacity to care, not just in terms of
knowledge, but providing them emotional support.
Most carers broke down in the interview and said that
it had not been possible for them to share their sorrows
with anyone at the centre.
FIGURE 14: Staff perception of admission guidelines at the CCC
120
100
80
Counselor n=4
60
Doctor n=3
Nurse n=5
ORW n=6
40
PC n=2
20
Provider satisfaction
0
Counsellors Nurse
ORW
Doctor
PC
29
Although providers reported high level of client
satisfaction at the centre, their own sense of satisfaction
No
response
Admission guidelines
are appropriate
Admission guidelines
are rigid
was often absent. 20 of the 24 providers had a strong
opinion on the CCC guidelines Most providers cite the
strict CCC guidelines, which make it impossible for
*Note : 4 of the staff interviewed who were cook/janitor have not been
considered in the figure, since they have not expressed any opinion on
this issue.
them to admit any serious patients as the major reason
for their sense of frustration at how little they are able
to do for the clients. This also emerged strongly in the
group discussions, where the staff strongly felt that
they should be allowed to admit patients with major
Opportunistic Infections and other problems, and be
allowed to care for them.
“Our limitation is that we can only take in those on ART.
We would like to admit people who need help for things
other than ART. We are not able to provide relief to many
people who need it. The Civil Hospital does take care of
people well and OIs are taken care of, but some hesitation
towards care of PLHIV is seen” A staff in Ahmedabad.
This feeling was more pronounced among the staff,
who were part of the CCC, when it was functioning
as an independent care centre and not under the
current guidelines and also among those members
of the staff who were themselves positive. The feeling
of dissatisfaction was very pronounced among the
nurses, outreach workers and even some counselors,
whereas, doctors largely did not express an opinion on
the issue or agreed with the guidelines. Some of the
programme coordinators felt strongly, while others did
not express an opinion on this.
“I think we have forgotten about care in quality of services.
After all care is very important to the patient, but I am not
sure how far we are able to provide it at the CCC” : Staff in
Ujjain, in the FGD
There was also a sense of frustration at not being able
to reach out to the sick patients. The mandate of the
CCC to manage OIs was not very clear and in some
cases staff also expressed that they felt that the patients
would not receive good care in the larger hospitals and
may be discriminated there.
Some of the providers also reported being very
frustrated about restrictions on the geographical
radius within which they could reach out to the clients.
Since most of the clients came from great distances, it
was difficult for them to reach out and do any effective
follow-up.
Another source of dissatisfaction was that some felt
that their full capacity was not utilized.
3.6 Impediments to Quality and
Suggestions for Improvement
Different impediments to care were identified by staff,
clients and family members. Among the clients, a few
articulated this specifically, as they had been to the
centre before it became a CCC, and in some cases were
not yet clear of the changed role of the CCC and how
it may affect their services. So absence of palliative
care and casework were seen as major gaps in the new
model.
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The key impediment identified by staff was the inability workers sometimes met them at the ART centre or in
to respond fully to the clients’ needs. This could be home visits if they were local. However, they too had
supporting a client who needed a long term admission. a sense of frustration that they are unable to follow up
There was such a client at one of the centres, a widow clients who live outside the 35 km radius. The ART unit
who was undergoing radiation for cervical cancer and felt that there were many defaulters because the ORWs
needed support and stay at the centre to manage side did not follow up. But resources prevented the CCCs
effects etc. She has no other support and her young from doing so.
son was studying in a distant district.
Some of the CCCs leveraged other resources to
This repeatedly came up in all the centres that duration provide nutritional supplements, rations etc at
of stay was not flexible and that the people other than monthly meetings. However, not all wished to come
those on ART also sometimes needed admission. It for the meetings. Sero-negative spouses said they felt
30
would not affect the ART related admissions if a few excluded at the meetings if their spouses refused to
in need of other medical or psychosocial care were come for the meetings as they were denied the rations
admitted at the centre,
and nutritional supplements.
“Jo marij hai, wohi to ayega. Jo accha hai who pagal
thodi hai idhar aakar letne ke liye” (“Only a person who is
sick will come, No one is crazy to come and lie here when
they are well.” A client in Ahmedabad.
The outreach staff and the nurses felt helpless when
people who were extremely ill and needed nursing and
nutritional inputs had to be turned away. The distance
of some of the CCCs to the ART centre and also to other
critical care hospitals was far. In Ahmedabad, it was
difficult to get transport from Ramol. Often they had
to carry the patient to the highway which was furlong
away to catch the highway ambulance.
For the clients, impediments included lack of facilities
for families to stay, inconvenient time of the doctor as
well CCCs not providing all the medicines. As medicine
and nutrition supplements cannot be provided beyond
the stay at the centre, it was felt that it sometimes undid
the recovery as the patient really had no resources to
continue the regimen at home.
Clients in Varanasi and Muzaffarpur, where family
involvement was discouraged have articulated the
need for family to be with them.
Most patients were brought in from the ART centre
for ART stabilization and after that the staff had little
contact with them. Some dropped in at the CCC
when they came on the monthly visit, but often, they
just came to the ART unit., there was limited follow
up both for the doctor and counselor. The outreach
Some of the centres had space constraints and privacy
for counseling was not available.
The major recommendations were pertaining to
provide more holistic in care and looking beyond ART
support. Many of the centre staff expressed a need to
have a lab for basic diagnosis, which they felt would
benefit both the clients as well as the staff, and make
the process quicker.
Good follow-up, especially with the patients who lived
far away, was another improvement suggested. Since
guidelines and restrictions on travel limited the radius
of geographical coverage of the CCC, many of the
patients who lived far away could not be followed.
Centre staff were concerned about making a difference
in the lives of the clients beyond medical support, and
were interested in building up systematic programmes
for livelihood and self-reliance.
Staff also expressed a need for more intensive training
across all categories of staff, and inputs on team work
and team building, which would help them deliver
services in a better way.
Some inputs related to specifics of the centre being
discussed, including some improvements in the
structure of the centre, as well as the timing of the
outpatient clinics.
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Chapter 4
Conclusions &
Recommendations
A lthough the small numbers make it difficult
to draw clear conclusions site wise, an overall
set of impressions can be formed based on
Other linkages
A good relationship also emerged with the various
31
the data from clients, family members and staff and other referral units like ICTC, RNTCP and the district
accordingly recommendations are drawn on them.
hospitals. These were institutional relationships and
supported the easy flow of referrals to and from the
A Positive Atmosphere
CCC to these treatment units. Problems with access
to testing or care were not reported by any client or
All the centres exuded a strong spirit of respect and family member after their first contact with the CCC.
acceptance of people living with HIV. A positive
atmosphere was reported by the majority who found
it peaceful, supportive, homely, and free of stigma and
discrimination. Most clients spontaneously reported
that they felt loved and cared for in the centre. In all
There was a strong attempt to bring people together to
meet and have a sense of solidarity and togetherness,
sometime with the district level networks, sometimes
by themselves.
staff interviews a genuine commitment and concern
came through as well as a desire to reach out to the
people and make life as comfortable as possible for
them.
The networking with other social and developmental
organizations was fairly limited and not adequately
tapped for meeting the psychosocial needs of
clients.
Linkage with the ART Centre
The centres are well linked with the ART centres and
there are good forward and backward linkages and
a systematic plan to reach out to the clients who are
reporting to the ART centre. However, despite this,
the in-flow of patients to the centres has been quite
low. This is because, although the primary role of CCC
was envisaged as ART observation and stabilization,
many clients and family members had not been able
to perceive the specific benefits of coming to the CCC
for this purpose. Those who live close by do not wish to
come. Some have even reported that they were forced
to come to the CCC by the CCC staff who brought them
against their wish. However, the majority reported that
they felt benefitted despite their reluctance to come
initially.
Clarity on the functions of the CCC
The division of responsibilities between CCC, ART
centre and the hospital have not been understood
very clearly. There is thus some confusion about the
extent to which care can be extended and the kind
of OIs that can be managed at the CCC, as well as the
OIs which will be managed at the ART centre. There
is thus some frustration in the staff, arising from this
lack of clarity. Although NACO guidelines include OI
management as the function of CCC, on the ground,
there is still confusion on the mandate of CCC. Simple
OIs which can be managed by the CCC itself, like oral
or esophageal candidiasis or diarrhoea are not being
handled, due to this confusion.
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Treatment education, adherence and Counselling and Emotional Support
positive living inputs
The function of counseling had poor visibility with
The inputs on treatment education and adherence
have been provided and the messages given at the
ART re-inforced, but they have been largely limited to
general information and advice. A systematic coverage
of different core topics does not appear to be taking
place. Again, while adherence levels are currently
reported to be high, it has to be borne in mind that
many of the clients not really understanding the role
of the counselor. The counselor’s role is seen to be
focusing on documentation and recordkeeping and
giving basic information on HIV. Emotional distress,
dealing with grief and loss and coping with the impact
of an HIV diagnosis on the person’s life are not being
adequately addressed.
more than half of the clients have been on ART for
less than a year. There is currently no individualized Training and Capacity Building of
32
strategy for promoting long term adherence.
Staff
Similarly, in depth inputs on safe sex practices is largely
absent and greater emphasis is given on abstinence.
Where condoms have been discussed, no condoms
are available for handing out and there are not stocked
in the centre and most centres are not doing condom
demonstrations. Discussions on difficulties faced in
having safe are largely absent. In the area of positive
living, specifics on nutritive value of various foods
or safe drinking water, exercise and sleep were not
mentioned by any respondent. Positive living and
positive prevention have not been personalized to
the context of the clients, and largely remain general
advice, which clients sometimes consider irrelevant.
The availability of PLHIV at the centre for 4-5 days is
currently not put to optimal use to systematically
provide inputs with counseling on adherence and
positive living
Involvement of Family Members
The planned involvement of family members as
a strategy for sustainable care and for improving
the quality of life of PLHIV is not evident. There is a
large gap in addressing the 4 key aspects of family
involvement : appreciating the role of family members
to provide emotional support to patients, recognizing
their potential in sustaining the care on discharge;
training the family members as agents of change in
the community and addressing the concerns, anxieties
and grief that family members themselves have. The
significant potential of family members’ ability to care
is not sufficiently tapped.
The centres have been able to reach out to clients
and family and have an excellent human response.
However, as the programme moves into its second
year, in-depth training of staff at all levels may be
needed in order to make their responses deeper and
more meaningful. The full potential of the centre can
be harnessed more effectively in this way.
Recommendations
Specific recommendations pertaining to specific
centres are included in Annexure 1
• There should be discussions among the staff
in each centre and the spirit of respect and
acceptance recognized and appreciated so that
it is not lost as the centre grows over the years.
• Although the linkages around ART and treatment
are good, linkages with developmental
organizations dealing with savings, income
generation activities, education of children etc
would be helpful and should be taken up.
• Greater clarity is needed on the role of the care
centres vis a vis the ART Centre so that the
centres can reach out and harness their maximum
potential
• Planned and systematic inputs on individual
treatment, adherence and positive living strategies
have to be evolved which are personalized and
relevant to the context of the clients.
• Involvement of family members is both a
strategic and human response. Since family
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members are a significant source of support • Counseling needs to go beyond primary
for the clients once they leave the centre, their
information giving to offer deeper level
understanding of HIV, universal precautions,
counseling and emotional support. Further
treatment and adherence is critical. Family
capacity building of the counselors is necessary.
members also need support in their own right as
caregivers to work through their own grief and
emotional distress. After PLHIV, they are the most
powerful agents of change in the community and
the centres need to start acknowledging this and
systematically plan their involvement in care. This
may require changing policy to include family
• Systematic capacity building for all staff to
reach out at deeper levels and make more
effective changes. Team building activities as well
as access to individual counseling and supervision
may be needed to prevent compassion fatigue
and burnout.
members at the time of admission, basic facilities
33
for their stay and ongoing inputs to them.
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