Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

BMJ Support Palliat Care. 2020 Dec;10(4):e33. doi: 10.1136/bmjspcare-2019-001795. Epub 2019 Jun 26.

Abstract

Objectives: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.

Methods: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.

Results: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.

Conclusions: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

Keywords: family carers; health services; palliative care; specialized palliative care services.

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Caregivers / psychology*
  • Cross-Sectional Studies
  • Family / psychology
  • Female
  • Hospice and Palliative Care Nursing / methods
  • Humans
  • Male
  • Middle Aged
  • Palliative Care / psychology*
  • Professional-Patient Relations*
  • Social Support*
  • Surveys and Questionnaires