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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. 1Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam, The Netherlands
  2. 2Expertise Center for Palliative Care, Amsterdam, The Netherlands
  3. 3The Netherlands Institute for Social Research, The Hague, The Netherlands
  4. 4Vrije 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}


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

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  • 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.

  • Patient consent for publication Not required.

  • Ethics approval Participants received written study information from Statistics Netherlands and participation was elective. According to Dutch law (Wet medisch wetenschappelijk Onderzoek met mensen), formal approval (eg, from a medical ethics committee) was not required as this study relied on secondary anonymised data collection. Statistics Netherlands functioned as a trusted third party, enabling the linkage between the data sets, while ensuring the privacy of the involved participants, according to Dutch law (Statistics Netherlands Act 2003). Data collection was in strict accordance with the national standard. At no time did the data set contain direct identifiers.

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

  • Data availability statement Data are available upon reasonable request.

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