No abstract

ObjectiveThe study is an early phase of development of a decision support framework for people with Marfan syndrome who are anticipating prophylactic aortic root surgery. Implications of the timing and the nature of the operation chosen were previously elicited in focus groups. In this step, we explored the range of relative values placed by individuals on the implications of decisions made about surgery.MethodsFollowing the principles of the Ottawa Decision Support Framework, eight questions in the general form ‘How important is it to you …’ were framed by a panel. Marfan people, families and specialist doctors answered online. Quantitative and qualitative analyses were performed.ResultsWorldwide, 142 responses were received including 25 specialist doctors. Respondents were 55% female and 46% had previous aortic root surgery. Overall, active lifestyle was more important to males (p=0.03). Patients placed more importance than doctors on not deferring surgery (p=0.04) and on avoidance of anticoagulation in the interests of childbearing (p=0.009). Qualitative analysis showed differing but cogently reasoned values that were sometimes polarised, and mainly driven by the wish to maintain a good quality of life and active lifestyle.ConclusionsGiven the cogency of these viewpoints, people anticipating root replacement surgery should have ample opportunity to express them and to have them acknowledged ahead of a consultation when they can then be fully explored in a mutually informed forum. If they differ from local medical practice, they can then be discussed in the process of reaching shared and individualised decisions.

Results suggest improvement in knowledge, understanding and confidence in parents and school staff that care for children with significant physical postural care impairments.

An exploratory qualitative study was undertaken with the aim of identifying issues around discussing and recording preferences on place of death from the perspective of hospice patients, carers, and hospice community nurses. A purposive sample was selected from three hospices in the south east of England of six community nurse specialists (CNSs), five patients, five carers, and five bereaved carers. The patients and carers said it was important to them to discuss their preferences, but they acknowledged that discussing dying was difficult. The CNSs stated that there were several barriers that inhibited end-of-life discussions and that discussing preferences was not always a primary goal of care planning. It was felt among the service users, particularly the bereaved carers, that having more knowledge about what to expect of the dying process, knowing their relative's wishes, and understanding the role of hospice and palliative care could improve the experience of events leading up to death.

Purpose -The purpose of this paper is to evaluate the needs of stroke survivors and the impact of a Life After Stroke service on users, and to explore the effectiveness of a service provided by a third sector organisation working closely with other stroke service provision. Design/methodology/approach -Review of management documents and reports, polling views of 128 service users through a nationally recognised survey designed to assess the service impact, and using interviews and focus groups to gain a deeper understanding of the value and impact of the service from a range of professionals involved with delivering stroke care. Survey response rates were similar to that experienced nationally and the age/gender profile of respondents suggested they were representative. Findings -The service was highly regarded by service users as providing personal, practical and emotional support from people who were knowledgeable and accessible in acute hospitals. From the wider perspective, professionals involved in the stroke pathway saw the service as complementing the acute hospital provision and the stroke community nursing team. The organisation providing the support service worked effectively across health and social care boundaries and built on their existing links and trusted relationships.Originality value -This adds to the evidence that the personal impact of stroke is substantial, and on being discharged from acute care many survivors will still have considerable needs. For those responsible for meeting these needs, the particular model of delivering stroke support evaluated here has been found to have considerable merits and resilience in the changing landscape of tighter resources and NHS restructuring.