Assessment of the decision support needs of immigrant and refugee women from HIV endemic countries regarding voluntary HIV testing

Abstract

Objective. The objectives of this study were: (1) To assess the decision support needs of immigrant and refugee women from countries where HIV is endemic regarding voluntary counselling and testing for HIV (VCT) in Canada; (2) To assess the needs of practitioners with respect to supporting the target group in making decisions about VCT in a culturally-appropriate manner; and (3) To evaluate the needs assessment concepts and tools in a cross-cultural context. Methods. Adapted semi-structured questionnaires based on the Ottawa Decision Support Framework (ODSF) were used to interview practitioners from a variety of clinical backgrounds who provided VCT and adult, English-speaking, immigrant women from HIV endemic countries presently living in Ottawa. Practitioners were purposefully selected from six community health centers, two anonymous HIV testing sites, and the Elizabeth Bruyere Family Medicine Center (EBFMC), an outpatient clinic offering specialized immigrant health services in Ottawa. The patients were recruited at EBFMC. Results. Results revealed gaps in the decision making needs of women from HIV endemic countries with respect to VCT. Differences in patient and practitioner perspectives on the target group's needs were found. For example, patients identified decision support constructs related to HIV stigma as important obstacles whereas providers emphasized service-oriented barriers. Also, while practitioners expressed concern about the target group's lack of basic knowledge about HIV, patients stressed the need for increased awareness of services in relation to HIV screening and treatment, and the knowledge of the benefits and harms associated with these services. Another difference between patient and practitioner perspective was that while all patients perceived the target group to be unaware of options around testing, only a few practitioners highlighted this concern. On the other hand, patients and practitioners offered similar viewpoints on decision support resources. In particular, both groups highlighted the importance of: (1) systems-level supports that could potentially enhance the effectiveness of HIV-related service delivery (i.e. programming considerations for multicultural populations, such as integrated HIV services and multiple formats for the delivery of HIV information); (2) improved availability and access to immigrant health services, particularly language services; (3) public education on HIV; (4) and personalized counselling strategies for VCT. Conclusions. Study findings emphasize the importance of multiple and multilevel interventions that involve: (1) adapting counselling approaches to address the decision support needs of women from the target group; (2) integrating decision support strategies into practice that facilitate decision making based on the best available scientific evidence and personal values, and in particular, decision aids that increase knowledge and clarify values towards available testing options and their consequences, and offer support to cope with HIV stigma; (3) understanding contextual factors that decrease the effectiveness of VCT in the care context, and; (4) enhancing awareness of broader issues that affect access and availability of healthcare and navigational resources for the target group, and immigrant populations in general. Practice implications. Decision support in the context of VCT can improve decisional quality. From a patient perspective, decision support during VCT can be an empowering tool that increases the chance that decisions are based on scientific evidence, realistic risk perception and personal values. From a practitioner perspective, decision support can supplement existing guidelines on VCT to provide culturally appropriate counselling and support.