Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

Abstract

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: a qualitative study

“…A lack of support from other family members and friends has been found to decrease family caregivers’ protection against perceptions of powerlessness and helplessness (Milberg & Strang, 2011 ). Furthermore, although family caregivers of end-of-life patients have varying support needs and “one size does not fit all” (Bijnsdorp et al, 2020 ), this study shows that those living with the patient under restricted social contact were longing for respite opportunities. Some suppressed their needs for respite while others sought to find a balance between reason and emotion, safety and needs by maintaining daily respite activities.…”

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

“…They stressed the need for respite care or some own free time. This discrepancy between the lack of support opportunities and the desire for more free time has the potential to increase the burden for family caregivers in need of more time off [ 42 ]. Allocation of support is also dependent on whether family caregivers clearly express their need for support [ 43 ].…”

Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

“…Family caregivers of people with advanced dementia have unique diseasespecific information and support needs 78 and experience significant stress during the transition from curative-oriented to palliative-oriented care. 79,80 Therefore, educational interventions should be preceded by in-depth assessment of family caregivers' positionality 81 and incorporate strategies to promote their wellbeing during this transitioning period and beyond, in addition to providing tailored education. Our review suggests that psychoeducational programmes, which involve weekly small groups of family caregivers for up to 10 weeks, reduce their role overload and caregiving-related stress, and improve use of reframing and competence in dealing with healthcare professionals despite not significantly affecting psychological distress.…”