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

• Published in: Scandinavian journal of caring sciences 2020-03, Vol.34 (1), p.44-51
• Main Authors: Jarling, Aleksandra, Rydström, Ingela, Ernsth‐Bravell, Marie, Nyström, Maria, Dalheim‐Englund, Ann‐Charlotte
• Format: Article
• Language: English
• Subjects: Activities of daily living; Aged; Aged, 80 and over; Aging; Caregivers; Caregivers - psychology; caring science; closely related; Emotions; Families & family life; Family - psychology; family caregiving; Family support; Female; home care; Humans; informal care; lived experience; Male; Meaning; Middle Aged; Nursing; Older people; phenomenology; reflective lifeworld research; Relatives; Sweden
• ISSN: 0283-9318; 1471-6712; 1471-6712
• DOI: 10.1111/scs.12703

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.