Combining paid work and family care at the end of life: Experiences, support needs and the impact on health and wellbeing

Femmy Martine Bijnsdorp

    Research output: PhD ThesisPhD-Thesis - Research and graduation internal

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    Abstract

    This thesis discussed the experiences, support needs, health and wellbeing of family caregivers who provide family care to a patient with a life-threatening illness in the home setting and who combine this with paid work. Based on a Q-methodological study among 41 family caregivers, four distinct profiles of family caregivers providing care to patients at home at the end of life were identified (Chapter 2). The profiles reflected heterogeneity in support needs and experiences with caregiving, as each profile group was dealing with different challenges and had different (unmet) support needs. To improve support, it is recommended that healthcare professionals and volunteers keep these profiles in mind when starting a dialogue with family caregivers. In Chapter 3, a pooled cross-section of data from the Dutch Informal Care Study among family caregivers of terminally ill patients at home (n=292), showed that working and non-working family caregivers had similar experiences regarding the care-related burden and positive experiences with care. Although working caregivers were perhaps more burdened because they also had occupational responsibilities and more caregiving tasks, they also seemed to have a greater capacity (physically and/or mentally) to manage these responsibilities, received more support from others and were able to use leave arrangements at work. Nevertheless, although 70% could combine work and care successfully, there was also a substantial group that was struggling. It is crucial that this latter group should receive support, both in their care situation and at work. In Chapter 4, first-round interview data from a longitudinal qualitative study among working family caregivers of people with a life-threatening illness (n = 18), showed that some family caregivers could combine paid work and family care successfully, while this combination was burdensome for other. Experiences with combining paid work and family care at the end of life were diverse and depended on several factors in four domains. If too many factors were out of balance, family caregivers experienced stress and this impacted their health and wellbeing. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks proved to be important in helping balance work and care responsibilities. A longitudinal qualitative study among 17 working family caregivers of patients with a life-threatening illness, Chapter 5 showed that it was common for family caregivers to experience a burden. Two trajectories of caregiver burden were identified; family caregivers with a persistent level of burden and family caregivers with an increasing burden over time. The study also identified three important overarching themes. We suggest that more support is needed from employers and healthcare professionals during the illness trajectory and after death in order to facilitate the combination of paid work and family care, and reduce the risk of burnout. In Chapter 6, a Dutch prospective cohort study (STREAM) among workers aged 45-64 years (n=12,447), showed that family caregiving was positively associated with depressive symptoms between and within persons for both women (BP B=0.80, 95% confidence interval (CI) 0.52–1.08; WP B=0.32, 95% CI 0.08–0.56) and men (BP B=0.75, 95% CI 0.45–1.05; WP B=0.25, 95% CI 0.01–0.48). Social support at work reduced the adverse effect of family caregiving on depressive symptoms for women (BP) and men (BP and WP). Emotional workload partly explained the effect of family caregiving for both women and men (BP). The longitudinal association between family caregiving and mental health was similar for male and female employees. Resources at work (i.e. social support) could protect caregiving employees against depressive symptoms. Lastly, in Chapter 7, all findings were put in perspective, strengths and weakness were appraised and recommendations for research, policy and practice were discussed.
    Original languageEnglish
    QualificationPhD
    Awarding Institution
    • Vrije Universiteit Amsterdam
    Supervisors/Advisors
    • Onwuteaka-Philipsen, Bregje Dorien, Supervisor, -
    • van der Beek, A.J., Supervisor, -
    • Boot, C.R.L., Co-supervisor, -
    • Pasman, Henriëtte Roeline Willemijn, Co-supervisor, -
    Award date7 Nov 2022
    Place of PublicationAmsterdam
    Publisher
    Print ISBNs9789464585698
    Publication statusPublished - 7 Nov 2022

    Keywords

    • Family care, paid work, life-threatening illness, end-of-life

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