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Palliative care

'Fighting for everything': service experiences of people severely affected by multiple sclerosis

Background No previous research exists specifically exploring the needs of those people severely affected by multiple sclerosis (MS).

Methods Semi-structured interviews were conducted with people identified by the referring health or social care professional as being severely affected by their MS and informal carers, in order to explore their perceptions of their illness and care. The data were analysed for themes using the constant comparative approach.

Thu, 07/20/2017 - 15:09

Moving toward Medicare home health coverage for people with Alzheimer’s disease

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit.

Thu, 07/20/2017 - 15:09

Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review

Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research.

Thu, 07/20/2017 - 15:09

From 'conductor' to 'second fiddle': older adult care recipients' perspectives on transitions in family caring at hospital admission

Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients’ perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care.

Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults’ perspectives about the impact of hospital admission on established family caring relationships.

Thu, 07/20/2017 - 15:09

Conducting a study to improve information exchange and develop communication strategies for informal carers of palliative care patients (and patients without carers): a team approach

The purpose of this paper is to report on research in progress. The research is being undertaken by the Sacred Heart Palliative Care Community Service (SHPCCS) multidisciplinary team on information and communication issues for carers of palliative care patients and patients without carers. The aim of the study is to explore the information needs of informal carers and patients without carers. A mixed methods, mixed methodology within a case study design has been use to conduct the study and the progress thus far has highlighted a number of challenges for the team.

Thu, 07/20/2017 - 15:09

The value of informal care: a further investigation of the feasibility of contingent valuation in informal caregivers

Including informal care in economic evaluations is increasingly advocated but problematic. We investigated three well-known concerns regarding contingent valuation (CV): (1) the item non-response of CV values, (2) the sensitivity of CV values to the individual circumstances of caring, and (3) the choice of valuation method by comparing willingness-to-pay (WTP) and willingness-to-accept (WTA) values for a hypothetical marginal change in hours of informal care currently provided.

Thu, 07/20/2017 - 15:09

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