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Payne, S.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support.

Fri, 03/29/2019 - 11:49

End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families

The aims of this qualitative study were to identify patients’ and family members’ experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews.

Thu, 07/20/2017 - 15:23

Recruiting older people into a large, community-based study of heart failure

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II-IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK.

Thu, 07/20/2017 - 15:20

A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK.

Thu, 07/20/2017 - 15:19

The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study

Context. Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives. To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods. Participants were 225 adult carers of patients from six U. K. Hospice Home Care services.

Thu, 07/20/2017 - 15:13

Respite in palliative care: a review and discussion of the literature

Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory.

Thu, 07/20/2017 - 15:12

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

An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

Objectives: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.

Setting: East Dorset Health Authority.

Subjects: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.

Design: Qualitative methods.

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