TY - JOUR
T1 - Combining paid work and family care for a patient at the end of life at home
T2 - insights from a qualitative study among caregivers in the Netherlands
AU - Bijnsdorp, Femmy M
AU - Onwuteaka-Philipsen, Bregje D
AU - Boot, Cécile R L
AU - van der Beek, Allard J
AU - Klop, Hanna T
AU - Pasman, H Roeline W
N1 - Funding Information: This research was supported by the Amsterdam Public Health Research Institute. The funder had no role in the design of the study, the collection, analysis or interpretation of data, or writing of the manuscript. Publisher Copyright: © 2021, The Author(s). Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/12
Y1 - 2021/12
N2 - BACKGROUND: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs.METHOD: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis.RESULTS: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains - caregiver characteristics, the care situation, the work situation and the context - influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt 'sandwiched' between work and care and reported physical or mental health complaints.CONCLUSIONS: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.
AB - BACKGROUND: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs.METHOD: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis.RESULTS: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains - caregiver characteristics, the care situation, the work situation and the context - influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt 'sandwiched' between work and care and reported physical or mental health complaints.CONCLUSIONS: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.
KW - Family care
KW - end-of-life
KW - interview study
KW - life-threatening illness
KW - paid work
UR - http://www.scopus.com/inward/record.url?scp=85109414132&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12904-021-00780-9
DO - https://doi.org/10.1186/s12904-021-00780-9
M3 - Article
C2 - 34167518
SN - 1472-684X
VL - 20
SP - 93
JO - BMC palliative care
JF - BMC palliative care
IS - 1
M1 - 93
ER -