title: Dying at home: a qualitative study of family carers' views of support provided by GPs community staff.
abstract: 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.
  
  
  OBJECTIVE
  To elicit family carers' views about the community support that made death at home possible.
  
  
  METHODS
  Qualitative study in East Devon, North Lancashire, and Cumbria.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Honiton Research Practice, Honiton.
authors.forename: David
authors.initials: D
authors.lastname: Seamark
authors.affiliation: Honiton Research Practice, Honiton.
authors.forename: Susan
authors.initials: S
authors.lastname: Blake
authors.affiliation: International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster.
authors.forename: Sarah G
authors.initials: SG
authors.lastname: Brearley
authors.affiliation: International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster.
authors.forename: Christine
authors.initials: C
authors.lastname: Milligan
authors.affiliation: International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster.
authors.forename: Carol
authors.initials: C
authors.lastname: Thomas
authors.affiliation: International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster.
authors.forename: Mary
authors.initials: M
authors.lastname: Turner
authors.affiliation: Department of Psychology, Leeds Metropolitan University, Leeds.
authors.forename: Xu
authors.initials: X
authors.lastname: Wang
authors.affiliation: International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster.
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
mesh_terms: D001291:Attitude of Health Personnel; D001601:Bereavement; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data / Q000600:supply & distribution; D003643:Death; D005194:Family Practice / Q000458:organization & administration*; D006701:Home Nursing / Q000523:psychology; D006801:Humans; D033183:Interdisciplinary Communication; D007407:Interviews as Topic; D010166:Palliative Care / Q000458:organization & administration* / Q000523:psychology; D010817:Physician-Patient Relations; D036301:Qualitative Research; D012944:Social Support; D013727:Terminal Care / Q000458:organization & administration* / Q000523:psychology; D019452:Terminally Ill / Q000523:psychology*; D006113:United Kingdom
keywords: community care; end of life; home palliative care; informal care givers; qualitative study