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Palliative care

Narrative research methods in palliative care contexts: Two case studies

Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses.

Thu, 07/20/2017 - 15:09

Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study

Background: Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.

Thu, 07/20/2017 - 15:09

An evaluation of palliative care services in the community

To develop palliative care services it is important to evaluate local services and identifiy any gaps in provision. In this study a mapping exercise and a postal questionannaire were used to attempt to canvass the views of patients and carers using a service in Gloucestershire. Reports on the methodology and the findings of the questionnaire.

Thu, 07/20/2017 - 15:09

A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims.  This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.

Thu, 07/20/2017 - 15:09

Perspectives on symptom control in patients receiving community palliative care

To remain at home, terminally ill cancer patients need good symptom control and support from informal carers. Few studies have explored the influence of informal carers on symptom control and vice versa. This qualitative case study was carried out in a specialist palliative care service (SPCS) to explore the reasons why patients were admitted for inpatient care. Ten patients were systematically selected and the main carer and health professionals involved in their care were invited to participate.

Thu, 07/20/2017 - 15:09

Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers

Background: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. Methods: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal care

Thu, 07/20/2017 - 15:09

One Chance to Get it Right: understanding the new guidance for care of the dying person

Background: Following criticism of the Liverpool Care of the Dying Pathway (LCP), widely used to guide care of dying people in British health-care settings, the UK Government set up an independent review which in 2013 recommended that use of the LCP be discontinued. In response, the Leadership Alliance for the Care of Dying People, a coalition of a wide range of stakeholders, recently published guidance entitled One Chance to Get it Right.

Thu, 07/20/2017 - 15:09

'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