9 research outputs found
Ryan White CARE Act Part D: Matches and Gaps in Political Commitment and Local Implementation
This article demonstrates the opportunities for and challenges of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Part D to implementing its mandate for comprehensive family-centered systems of care for women, infants, children, and youth with HIV/AIDS. Part D legislation should promote practices addressing families with models for basic security, judiciously embrace those universal public health policies aiming to improve children's overall welfare, and consistently repudiate those policies infringing on human rights of women infected with HIV, or ignoring their children's basic needs. The proposed revisions to Part D implementation may renew its political commitment to serving the needs of families who are HIV affected
Health Care System and Policy Factors Influencing Engagement in HIV Medical Care: Piecing Together the Fragments of a Fractured Health Care Delivery System
Grounded in a socio-ecological framework, we describe salient health care system and policy factors that influence engagement in human immunodeficiency virus (HIV) clinical care. The discussion emphasizes successful programs and models of service delivery and highlights the limitations of current, fragmented health care system components in supporting effective, efficient, and sustained patient engagement across a continuum of care. A fundamental need exists for improved synergies between funding and service agencies that provide HIV testing, prevention, treatment, and supportive services. We propose a feedback loop whereby actionable, patient-level surveillance of HIV testing and engagement in care activities inform educational outreach and resource allocation to support integrated “testing and linkage to care plus” service delivery. Ongoing surveillance of programmatic performance in achieving defined benchmarks for linkage of patients who have newly diagnosed HIV infection and retention of those patients in care is imperative to iteratively inform further educational efforts, resource allocation, and refinement of service delivery
Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia
Background: Australia's commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers.Methods: As part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process.Results: The on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience.Conclusions: The successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members