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A responsibility that never rests - To be a family caregiver to an older person
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0001-6663-8515
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
Institute of Gerontology, Jönköping University.
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
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2019 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2019.
National Category
Nursing
Research subject
The Human Perspective in Care
Identifiers
URN: urn:nbn:se:hb:diva-21011DOI: 10.1111/scs.12703ISI: 000516881800005Scopus ID: 2-s2.0-85065418558OAI: oai:DiVA.org:hb-21011DiVA, id: diva2:1314921
Available from: 2019-05-10 Created: 2019-05-10 Last updated: 2021-10-20Bibliographically approved
In thesis
1. Delad utsatthet: Vård i hemmet ur äldre människors, anhörigas och professionella vårdares perspektiv
Open this publication in new window or tab >>Delad utsatthet: Vård i hemmet ur äldre människors, anhörigas och professionella vårdares perspektiv
2020 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of the thesis was to deepen the knowledge about home care from the perspective of older people, family caregivers, and professional caregivers.

Approach and method: A lifeworld approach was used to describe different experiences of home care. Lifeworld interviews were performed in three studies, and analyses were conducted according to different methodological principles. Study I describes the meaning of home care from the perspective of older people who live alone, including interviews with 12 participants analyzed with qualitative content analysis. Study II describes the life situation in which responsibility for an older person is imposed upon family caregivers. Ten interviews were conducted and analyzed using a phenomenological method. Study III, using phenomenography, describes perceptions of caring responsibility based on interviews with 14 professional caregivers. Study IV explores health and social network factors related to receiving care in the home among older adults (n = 317). Descriptive statistics and regression analyses were conducted. Finally, a synthesis was carried out and interpreted with a philosophical analysis in order to support the understanding of home care from different perspectives as a whole.

Main results: Becoming older with increased caring needs disrupts one’s life when the private home becomes a public arena. The older person needs to adapt to a caring culture, but they are often unable to influence their care and must deal with forced relations. Family caregivers assume a great responsibility that changes and interferes with their whole life situation and impacts their health and relationships. Professional caregivers are also affected to a great extent, as the burden is high. Responsibility is perceived as limitless, constrained by time, moral, overseeing, meaningful and lonesome. To be cared for in one’s own home is complex from both a medical and psychosocial perspective. The results also give an indication of the importance of relationships and increasing awareness of the social perspectives of home care.

Conclusion: This thesis contributes to the existing knowledge of how home care can be experienced from the perspectives of older people, family caregivers and professional caregivers in order to provide good and safe home care based on individual needs. Home care as a phenomenon is complex—it entails a vulnerable situation for the older person, the family caregivers, and professional caregivers. The results show the importance of a holistic perspective that includes individual experiences. They also highlight the importance of considering social perspectives and relationships in home care rather than merely focusing on medical and/or functional factors.

Place, publisher, year, edition, pages
Borås: Högskolan i Borås, 2020
Series
Skrifter från Högskolan i Borås, ISSN 0280-381X ; 113
Keywords
home care, older people, family caregivers, informal care, formal care, professional caregivers, health, lifeworld.
National Category
Nursing
Research subject
The Human Perspective in Care
Identifiers
urn:nbn:se:hb:diva-23848 (URN)978-91-88838-95-7 (ISBN)978-91-88838-96-4 (ISBN)
Public defence
2020-12-04, M404, Sandgärdet, Borås, 09:30 (Swedish)
Opponent
Supervisors
Note

Disputationen sänds via videolänk, förinformation se kalendariet på hb.se/forskning.

Available from: 2020-11-13 Created: 2020-09-24 Last updated: 2022-04-12Bibliographically approved

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Jarling, AleksandraRydström, IngelaNyström, MariaDalheim Englund, Ann-Charlotte

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Jarling, AleksandraRydström, IngelaNyström, MariaDalheim Englund, Ann-Charlotte
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