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Poster Numbers 65 to 76 – Caregiving before and after death: Poster No: 75
Prepared to care: managing home based care and the information needs of carers at end of life
  1. Emily Harrop,
  2. Annmarie Nelson and
  3. Anthony Byrne
  1. Marie Curie Palliative Care Research Centre, WCTU, School of Medicine, Cardiff University, Wales, UK

Abstract

Background The physical care needs of patients approaching the end of life are considerable and require specialist knowledge and skills among those who care for them. However, while health professionals receive extensive training and guidance on how to manage such needs when hospice patients are discharged back home families often express concern as they themselves receive no formal training or guidance on practicalities of physical care and instead adopt a ‘trial and error approach’ to palliative care. Such experiences create barriers in terms of the families' self-perception of the care they can provide, and can precipitate re-admission to hospital. This is not only problematic for the patient but also impacts upon carer wellbeing. A variety of psychological and physical health problems have been identified for carers, some of which are associated with carers' perception of competence and the quality of care that they provide.

Aims To explore carers perceptions of their experiences of caring and to identify unmet needs to inform a subsequent intervention.

Methods We carried out four focus groups in September 2011, two focus groups with nurses at a local hospice and two focus groups with carers/former carers of patients at the hospice. The group discussions explored experiences of, and views on, the challenges of providing care in the home setting, the information and training needs of carers and the feasibility and practicalities of possible interventions.

Results This paper will report the main themes to emerge from the data, following a thematic analysis of the focus group transcripts.

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