A qualitative exploration of barriers to HIV prevention,treatment and support: Perspectives of transgender women and service providers

Transgender (trans) women experience barriers to access to HIV care, which result in their lower engagement in HIV prevention, treatment and support relative to cisgender people living with HIV. Studies of trans women's barriers to HIV care have predominantly focused on perspectives of trans women, while barriers are most often described at provider, organisation and/or systems levels. Comparing perspectives of trans women and service providers may promote a shared vision for achieving health equity. Thus, this qualitative study utilised focus groups and semi-structured interviews conducted 2018–2019 to understand barriers and facilitators to HIV care from the perspectives of trans women (n = 26) and service providers (n = 10). Barriers endorsed by both groups included: (a) anticipated and enacted stigma and discrimination in the provision of direct care, (b) lack of provider knowledge of HIV care needs for trans women, (c) absence of trans-specific services/organisations and (d) cisnormativity in sexual healthcare. Facilitators included: (a) provision of trans-positive trauma-informed care, (b) autonomy and choice for trans women in selecting sexual health services and (c) models for trans-affirming systems change. Each theme had significant overlap, yet nuanced perspective, between trans women and service providers. Specific recommendations to improve HIV care access for trans women are discussed. These recommendations can be used by administrators and service providers alike to work collaboratively with trans women to reduce barriers and facilitators to HIV care and ultimately to achieve health equity for trans women.     

Perspectives of self‐direction: a systematic review of key areas contributing to service users’ engagement and choice‐making in self‐directed disability services and supports

Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.