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Original research
Palliative care utilisation: family carers’ behaviours and determinants—a qualitative interview study
  1. Anne-Lore Scherrens1,2,
  2. Kim Beernaert1,2,
  3. Laurence Magerat3,
  4. Luc Deliens1,2,
  5. Benedicte Deforche2,4 and
  6. Joachim Cohen1
  1. 1 End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium
  2. 2 Public Health and Primary Care, Ghent University, Ghent, Belgium
  3. 3 Occupational Therapy, Artesis Plantijn Hogeschool Antwerpen, Antwerpen, Belgium
  4. 4 Movement and Sport Sciences, Physical activity, Nutrition and Health Research unit, Vrije Universiteit Brussel, Brussels, Belgium
  1. Correspondence to Anne-Lore Scherrens, End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels 1090, Belgium; Anne-Lore.Scherrens{at}vub.be

Abstract

Objectives Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underlying determinants that might contribute to starting palliative care.

Methods A qualitative study with 16 family carers of deceased persons who used palliative care was conducted using semistructured, face-to-face interviews. Constant comparison analysis was used to identify groups of behaviours that influenced starting palliative care and related determinants. The behavioural determinants were matched with concepts in existing behavioural theories. A preliminary behavioural model was developed.

Results Most reported behaviours regarding starting palliative care were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (eg, of poor health), knowledge (eg, concerning palliative care), attitudes (eg, negative connotations of palliative care) and social influences (eg, important others’ opinions about palliative care).

Conclusions This study identified relevant family carers’ behaviours and related determinants that can contribute to starting palliative care. As these determinants are changeable, the palliative care behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting palliative care.

  • communication
  • terminal care
  • family management
  • hospice care

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

https://doi.org/10.1136/bmjspcare-2020-002207

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information.

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    Footnotes

    • Twitter @ALScherrens

    • BD and JC contributed equally.

    • Contributors All authors, A-LS, KB, LM, LD, JC and BD, were responsible for the literature search, planning and design of the study. LM was responsible for data collection. LM and A-LS were responsible for data analysis. All authors contributed to the interpretation of the data. A-LS and KB wrote the first draft of the manuscript and critically revised the manuscript after receiving comments from all authors. KB, LD, BD and JC supervised the study. KB, BD and JC contributed to acquisition of funding. A-LS was responsible for final submission and as guarantor of content.

    • Funding This work was supported by grants from the Vrije Universiteit Brussel (HOA24) and Ghent University (BOF). A-LS is a Predoctoral Fellow and KB is a Postdoctoral Fellow at the Research Foundation Flanders (FWO).

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.