Standards for the care of people with cystic fibrosis (CF); Planning for a longer life.

This is the final of four papers updating standards for the care of people with CF. That this paper "Planning a longer life" was considered necessary, highlights how much CF care has progressed over the past decade. Several factors underpin this progress, notably increased numbers of people with CF with access to CFTR modulator therapy. As the landscape for CF changes, so do the hopes and aspirations of people with CF and their families. This paper reflects the need to consider people with CF not as a "problem" to be solved, but as a success, a potential and a voice to be heard. People with CF and the wider CF community have driven this approach, reflecting many of the topics in this paper. This exercise involved wide stakeholder engagement. People with CF are keen to contribute to research priorities and be involved in all stages of research. People with CF want healthcare professionals to respect them as individuals and consider the impact of our actions on the world around us. Navigating life presents challenges to all, but for people with CF these challenges are heightened and complex. In this paper we highlight the concerns and life moments that impact people with CF, and events that the CF team should aim to support, including the challenges around having a family. People with CF and their care teams must embrace the updated standards outlined in these four papers to enjoy the full potential for a healthier life.

From health care to home community: an Aboriginal community-based ABI transition strategy.

PRIMARY OBJECTIVE: To explore the barriers and enablers surrounding the transition from health care to home community settings for Aboriginal clients recovering from acquired brain injuries (ABI) in northwestern Ontario. RESEARCH DESIGN: Participatory research design using qualitative methods. METHODS: Focus groups conducted with clients with ABI, their caregivers and hospital and community health-care workers. The Framework Method of analysis was used to uncover emerging themes. FINDINGS: Six main categories emerged: ABI diagnosis accuracy, acute service delivery and hospital care, transition from hospital to homecare services, transition from hospital to community services, participant suggestions to improve service delivery and transition, and views on traditional healing methods during recovery. DISCUSSION: A lack of awareness, education and resources were acknowledged as key challenges to successful transitioning by clients and healthcare providers. Geographical isolation of the communities was highlighted as a barrier to accessibility of services and programmes, but the community was also regarded as an important source of social support. The development of educational and screening tools and needs assessments of remote communities were identified to be strategies that may improve transitions. CONCLUSIONS: Findings demonstrate that the structure of rehabilitation and discharge processes for Aboriginal clients living on reserves or in remote communities are of great concern and warrants further research.