A responsibility that never rests – the life situation of a family caregiver to an older person

Abstract

Background When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life. Aim This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. Methods In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. Findings In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. Conclusion A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

Perceptions of Professional Responsibility When Caring for Older People in Home Care in Sweden

“…Working as a professional caregiver includes meeting older people with complex needs and being exposed to difficult situations and challenging decisions (Furaker, 2012) that include ethical aspects. Caring places high demands on professional caregivers because it includes interpersonal relationships (Meiers & Brauer, 2008), not only with the older person but also with his/her family (Jarling et al, 2019;Rasoal et al, 2018). To better understand how these requirements manifest and how they are handled, the present study aimed to describe perceptions of caring responsibility in the context of older people's homes from the perspective of professional caregivers from caring professions.…”

“In August, I Counted 24 Different Names”: Swedish Older Adults’ Experiences of Home Care

“…Instead, it has declined further, and this trend is consistent with the present findings. Jarling, Rydström, Ernsth Bravell, Nyström, & Dalheim Englund (2018) identified similar gaps between older adults' legal rights, their experiences of receiving home care, and their ability to influence it. The present findings reveal that older adults' wishes and needs are not unreasonable.…”

The intertwining of reconciliation and displacement: a lifeworld hermeneutic study of older adults’ perceptions of the finality of life

“…This raises the question of what it means to be a family caregiver and to care for a close family member in one’s home. Jarling et al ( 2019 ) investigated how a person’s life situation is affected by the responsibility of caring for older relatives in their own homes in Sweden, which yielded interesting findings. Although the Swedish social service legislation is generous in supporting family care, the situation of family caregivers appears to resemble that of caregivers in countries without such legislation.…”

“…Informal family caregivers describe caring for a loved one as a responsibility that never rests, which paradoxically is both voluntary and non-chosen. In such responsibility, the previously close relationship as a husband, wife or child is affected in a way that makes it unequal and hard to manage, yet it is also a source of doing something meaningful (Jarling et al, 2019 ). These changed relationships may be seen as an ontological challenge that, according to the results of the present study, many older adults wish to avoid.…”