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Research
Family carer support in home and hospital: a cross-sectional survey of specialised palliative care
  1. Maarten Vermorgen1,
  2. Aline De Vleminck1,
  3. Kathleen Leemans1,2,
  4. Lieve Van den Block1,
  5. Chantal Van Audenhove3,
  6. Luc Deliens1,4 and
  7. Joachim Cohen1
  1. 1End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium
  2. 2Department of Radiotherapy, Brussels University Hospital, Brussels, Belgium
  3. 3LUCAS Center for Care Research and Consultancy, University of Leuven, Leuven, Belgium
  4. 4Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
  1. Correspondence to Mr Maarten Vermorgen,End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium; maarten.vermorgen{at}vub.be

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.

  • family carers
  • palliative care
  • specialized palliative care services
  • health services

https://doi.org/10.1136/bmjspcare-2019-001795

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    Footnotes

    • Contributors KL, LVdB, LD and JC contributed to the study concept, study design and data collection. MV, ADV and KL contributed to the statistical analysis. MV drafted the manuscript with input from all authors. The final manuscript was read and approved by all authors.

    • Funding This study is supported by a grant from the Flemish government agency for Innovation by Science and Technology (agentschap voor Innovatie door Wetenschap en Technologie, SBO IWT nr. 140009).

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval The study protocol, detailing procedures on measurement and data collection, was approved by the University Ethical Review Board and by the local ethical board of every hospital participating in the measurement.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement Data are available upon reasonable request.