Study Fosters Patient-friendly Hospital Environment

As the number of people living with HIV/AIDS (PLHA) continues to rise, so do the demands on health care systems throughout the world. Stigma and discrimination against PLHA are reported to be severe in many public and private hospitals in India, a problem that is often aggravated by insufficient training of health care workers, lack of supplies to enact universal precautions, and inadequate policies.

In response, the Indian government and several medical institutions are recognizing the need to create a welcoming environment for PLHA through more supportive policies and safer procedures for health care workers. The National AIDS Control Organization (NACO) has made efforts to train health care workers in clinical management of HIV/AIDS. India’s recently ratified National AIDS Prevention and Control Policy explicitly calls for program and policy initiatives to curb stigmatization in health care settings.

Building on these initiatives, researchers at Horizons and SHARAN, an NGO in India, are conducting research to test approaches for creating a “patient-friendly” hospital milieu. Investigators are collaborating with three New Delhi hospitals, one private and two run by the government, to pilot the intervention, which has been endorsed by NACO. Each hospital serves a representative cross-section of the New Delhi population and has demonstrated an interest in improving services for PLHA and a willingness to collaborate with local NGOs.

At first, hospital managers were not certain that stigma and discrimination were “real” issues.

Before developing the intervention, researchers conducted exploratory research to identify the strengths and limitations of services for PLHA in the three institutions. The project team interviewed 32 health care workers, 3 medical superintendents, and 24 patients and their caregivers to explore the manifestations and causes of stigma and discrimination in clinical settings and to develop indicators for evaluating the intervention. This was followed by baseline research, during which the researchers observed hospital practices, documented policies, and conducted interviews with 134 doctors, 375 nurses, 375 ward staff, and 5 patients.

During the exploratory and baseline phases, researchers found that PLHA and their caregivers reported that they receive differential treatment from health care workers that limits their access to care. The study team also found that within the health care setting, misconceptions about HIV transmission, negative attitudes about PLHA, inadequate training and supplies for infection control, and lack of institutional policies on confidentiality and HIV testing all contribute to inequality in treatment.

Based on the exploratory and baseline findings, the hospital managers and the project team designed such tools as the “Self-assessment Checklist for a Patient-friendly Environment” to help managers identify institutional strengths and weaknesses and improve their services. Hospital managers were also engaged in developing and reviewing policy guidelines to help them assess their own institutional policies.

Using a participatory process that included discussion of the baseline data and the self-assessment tools, managers at each hospital worked with the project team to draft an action plan to improve services for PLHA and working conditions for staff. The action plans vary by hospital but include such actions as posting information on universal precautions, training more health care workers from each department in pre- and post-test HIV counseling, and offering staff participatory sensitization training, designed and implemented by local AIDS organizations.

“At first, hospital managers were not certain that AIDS-related stigma and discrimination were ‘real’ issues,” said Vaishali Sharma Mahendra of Horizons. “But once data gathered from all levels of staff and patients on what was happening in their own hospitals was shared with them, they could see that stigma and discrimination are indeed real and plan activities for where they needed to improve.”

In the upcoming year, the project team will evaluate the intervention by analyzing baseline and follow-up survey data, scores on the self-assessment checklist, and institutional progress on action plans. The checklist will be revised for broader use in India at the end of the project and will be distributed by NACO, along with the policy guidelines.

A generic version of the checklist is available to interested groups. For more information, contact Laelia Gilborn at lgilborn@pcdc.org. To receive e-mail notification when reports or summaries about this and other studies become available, sign up at www.popcouncil.org/horizons/signup.html.

Sherry Hutchinson

BURKINA FASO, ECUADOR, ZAMBIA, INDIA
PLHA Involvement Strengthens Service Delivery, Improves Health

Despite growing recognition globally of the importance of involving PLHA in policy formulation and service delivery, there has been little research that examines such involvement or assesses its impact. To address this gap, Horizons and the International HIV/AIDS Alliance recently completed a study of PLHA involvement in 17 NGOs in four countries to identify conditions that foster PLHA involvement and strategies that can help NGOs achieve meaningful PLHA participation.

Researchers from Burkina Faso, Ecuador, Zambia, and India collected data using qualitative and quantitative methods, including individual and group interviews, focus group discussions, observation, service statistics, and a questionnaire. The 745 individuals interviewed included PLHA service users, NGO staff and volunteers, and such key informants as policymakers, health professionals, and community leaders. In all four countries, PLHA were involved in the participating NGOs as service providers, service users, or both.

The study identified four distinct types of PLHA involvement. Access to services, the most common type of PLHA involvement observed among the participating NGOs, involves taking part in NGO activities as users of services, such as medical care, counseling, or training. Inclusion is when NGOs involve PLHA as support staff in non-HIV/AIDS activities or as occasional volunteers in HIV/AIDS service delivery, such as providing informal peer support at support group meetings or community outreach activities. Participation is when PLHA deliver HIV/AIDS-related services on a formal, regular basis, as employees or volunteers. Greater involvement is the most advanced stage, where PLHA take part in management and strategic planning as directors, trustees, or program managers and may represent the organization externally.

Study respondents overall reported that involvement has a therapeutic effect on PLHA. This includes improved psychological health as a result of peer support and decreased isolation.

Informants also said their physical health improved because of better access to information about care, and in some cases, medical care and treatment. They also cited increased income or access to material benefits as compensation for services. Some respondents in Zambia and Ecuador said they had reduced their own risky behaviors, especially the number of sexual partners.

Nonetheless, respondents in all four countries reported drawbacks to PLHA involvement, depending on the activities carried out and the level of visibility. In Ecuador and Zambia, some PLHA reported personal experiences of stigma and discrimination because of their visible involvement in delivering services or managing the NGO.

“PLHA involvement should not be equated with public disclosure and visibility.”

While the broader sociocultural context is an important influence on PLHA involvement, the study also found that the NGO environment plays a pivotal role in determining not only the extent to which PLHA are involved but also the quality of their experience. NGO managers and staff can act as barriers when they have judgmental and paternalistic attitudes about PLHA, are unaware of how gender and sexuality influence the lives of PLHA, and lack the will to create inclusive organizational policies and varied opportunities for PLHA participation.

To build a more supportive environment, the researchers recommend that NGOs promote positive and non-discriminatory staff attitudes, policies, and procedures. This includes providing sensitization training for staff and allowing PLHA to decide how to handle disclosure and visibility issues.

“One of the most important recommendations that emerged from this study is that PLHA involvement should not be equated with public disclosure and visibility,” said Chris Castle of Horizons/International HIV/AIDS Alliance. “The involvement of PLHA should be matched with the degree of visibility with which they feel comfortable.”

NGOs should also build the capacity of PLHA for involvement by providing accurate information about HIV/AIDS, counseling services, and free or affordable training relevant to the activities that PLHA undertake.

The research also revealed the importance of offering support—psychological and material—to PLHA. Peer support groups are particularly important for providing an opportunity to share problems and allowing PLHA to disclose their serostatus, but such groups are often difficult to sustain. NGOs can enhance their sustainability by helping members develop common objectives and expectations, clarifying the roles and responsibilities of support group members and the NGO, developing mechanisms to cope with the death of members, and providing opportunities to build members’ skills.

In India, the study has generated considerable interest from other NGOs, PLHA networks, the National AIDS Control Organization, UNAIDS, USAID, and others. In Burkina Faso, the four NGOs that participated in the study adopted several of the recommendations to improve PLHA involvement within their organizations. The study had also become a catalyst for revising government policy on HIV/AIDS to include PLHA care and support needs.

For more information, contact Chris Castle at ccastle@pcdc.org or go to www.popcouncil.org/horizons/ressum/plha4cntry/plha4cntry.html to read a summary of this research. A second summary about the Burkina Faso impact data is available at www.popcouncil.org/horizons/ressum/plha4cntry/plha4cntry_bffollowup.html.

Ellen Weiss