TY - JOUR

T1 - Dying at home

T2 - a qualitative study of family carers' views of support provided by GPs community staff

AU - Seamark, David

AU - Blake, Susan

AU - Brearley, Sarah G.

AU - Milligan, Christine

AU - Thomas, Carol

AU - Turner, Mary

AU - Wang, Xu

AU - Payne, Sheila

N1 - © British Journal of General Practice 2014.

PY - 2014/12/1

Y1 - 2014/12/1

N2 - BACKGROUND: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers.AIM: To elicit family carers' views about the community support that made death at home possible.DESIGN AND SETTING: Qualitative study in East Devon, North Lancashire, and Cumbria.METHOD: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6-24 months after the death.RESULTS: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control.CONCLUSION: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

AB - BACKGROUND: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers.AIM: To elicit family carers' views about the community support that made death at home possible.DESIGN AND SETTING: Qualitative study in East Devon, North Lancashire, and Cumbria.METHOD: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6-24 months after the death.RESULTS: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control.CONCLUSION: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

KW - community care

KW - end of life

KW - home palliative care

KW - informal care givers

KW - qualitative study

U2 - 10.3399/bjgp14X682885

DO - 10.3399/bjgp14X682885

M3 - Journal article

C2 - 25452545

VL - 64

SP - e796-803

JO - British Journal of General Practice

JF - British Journal of General Practice

SN - 0960-1643

IS - 629

ER -