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Home care for terminally ill patients: the experiences of family caregivers with and without paid work
  1. Femmy M Bijnsdorp1,2,
  2. Allard J van der Beek1,
  3. H Roeline W Pasman1,2,
  4. Cécile R L Boot1,
  5. Alice H de Boer3,4,
  6. Inger Plaisier3 and
  7. Bregje D Onwuteaka-Philipsen1,2
  1. 1 Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam, The Netherlands
  2. 2 Expertise Center for Palliative Care, Amsterdam, The Netherlands
  3. 3 The Netherlands Institute for Social Research, The Hague, The Netherlands
  4. 4 Vrije Universiteit Amsterdam, Department of Sociology, Amsterdam, The Netherlands
  1. Correspondence to Femmy M Bijnsdorp, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam UMC, Vrije Universiteit Amsterdam, 1081 HV Amsterdam, The Netherlands; f.bijnsdorp{at}amsterdamumc.nl

Abstract

Objectives To facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work.

Methods We used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292).

Results Working family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully.

Conclusions Working and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.

  • home care
  • informal care
  • end of life
  • life-work balance
  • family care

Data availability statement

Data are available upon reasonable request.

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Data availability statement

Data are available upon reasonable request.

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Footnotes

  • Contributors FMB was the primary researcher and contributed to the design of the study, analysis and interpretation of data and she was the writer of this manuscript. AJvdB, HRWP, CRLB, AHdB, IP, BDO-P contributed to the design of the study and interpretation of data. All authors commented on draft manuscripts and read and approved the final manuscript.

  • Funding The Netherlands Institute for Social Research initiated the Informal Care (IZG) Study and is supported by the Netherlands Ministry of Health Welfare and Sports.

  • 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.