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Crossing a Line: A narrative of risk-taking by older women serving as caregivers
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.ORCID iD: 0000-0002-2241-3303
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.ORCID iD: 0000-0003-1026-5419
Luleå University of Technology, Department of Health Sciences, Health and Rehabilitation.ORCID iD: 0000-0001-9143-9235
2017 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 41, p. 60-66Article in journal (Refereed) Published
Abstract [en]

Background

Caregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers.

Aim

To explore the everyday experiences of older adults serving as primary informal caregivers to significant others.

Methods

A process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative.

Results

These caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative.

Conclusion and significance

The everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.

Place, publisher, year, edition, pages
Elsevier, 2017. Vol. 41, p. 60-66
National Category
Occupational Therapy
Research subject
Occupational therapy
Identifiers
URN: urn:nbn:se:ltu:diva-63134DOI: 10.1016/j.jaging.2017.04.002ISI: 000404490400008PubMedID: 28610756Scopus ID: 2-s2.0-85018485234OAI: oai:DiVA.org:ltu-63134DiVA, id: diva2:1090486
Note

Validerad; 2017; Nivå 2; 2017-04-24 (andbra)

Available from: 2017-04-24 Created: 2017-04-24 Last updated: 2018-07-10Bibliographically approved
In thesis
1. The Occupation of Caregiving: Moving Beyond Individualistic Perspectives
Open this publication in new window or tab >>The Occupation of Caregiving: Moving Beyond Individualistic Perspectives
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Omsorg om andra som aktivitet : mer än ettindividualistiskt perspektiv
Abstract [en]

The overall aim of this research was to illuminate and describe caregiving as an occupation, informed by perspectives from older adult care partners and occupational therapists. An additional aim was to integrate and inform study findings with theoretical constructs that inform occupational therapy practice through occupational science and public health perspectives. Although caregiving was the main construct under consideration, the specific focus was on care situations involving older adults.

Study 1 considered the narratives of 3 older adult women serving as informal (unpaid) caregivers to friends and family members. All of the women were over the age of 65 and of varied racial/ethnic backgrounds. Data were elicited through story prompts embedded in repeated semi-structured interviews and analyzed using a storyboarding approach and poetic transcription.

Study 2 was an ethnographic case study considering how care dyads take part in community mobility, a common instrumental activity of daily living, with a particular focus on how the caregiver supports the participation of the care recipient. 3 care dyads (6 participants) over the age of 65 were consented into the study. The researcher employed participant observation, field note journaling and semi-structured interviews followed by thematic qualitative analysis to illuminate strategies used by these care dyads to remain active in community mobility in the context of their care situation.

Study 3 used a constructivist grounded theory approach to explore the perspectives of occupational therapists regarding their interactions with older adult caregivers. Repetitive focus groups with 11 occupational therapy practitioners, researcher memos and individual reflections from 2 additional participants provided multifaceted data that the researchers analyzed through several levels of coding to construct a grounded theory of occupational therapist-caregiver interactions.

Study 4 consisted of secondary data analyses of a national survey of adult caregivers conducted in the United States in 2014-2015. Data specific to 482 caregivers age 65+ and older and their care recipients were extracted from the overall sample and considered in relationship to responses to questions regarding support received from healthcare providers. Descriptive and inferential statistical analyses were employed to develop a profile of older adult care situations and predict inquiries of support from healthcare providers based on care situation characteristics.

Findings from the first two studies highlighted the relational nature of caregiving and an expanded view of the caregiver role. Study 1 also revealed that interactions with health care providers in positions of authority are often challenging and compel caregivers to act in ways they perceive as risky. Study 2 reinforced that caregivers act in ways that are influenced as much or more by the history of their relationships as by caregiving demands, and led to the explication of relational versus individual perspectives. These findings influenced the approaches used in studies 3 and 4, which focused on interactions between healthcare providers and older caregivers, specifically occupational therapists in study 3 and other healthcare professionals in study 4. Findings from study 3 resulted in a theoretical stance that occupational therapists are influenced by biomedical contexts to situate caregivers as paraprofessionals to help meet care recipient goals. This perpetuates an individualistic lens on caregiving, emphasizing the biomedical priorities of the patient over the priorities or support needs of the care situation. Support offered by healthcare providers in the form of inquiries about the needs of older caregivers was found in study 4 to be less than optimal, and appears not to be predicted by any characteristics of the care situation other than the living situation of the care recipient. In sum, individualistic perspectives fail to realize the occupational complexity of caregiving, and provide an opportunity to explore more collective paradigms when supporting older adult care situations.

 

Place, publisher, year, edition, pages
Luleå: Luleå University of Technology, 2018
Series
Doctoral thesis / Luleå University of Technology 1 jan 1997 → …, ISSN 1402-1544
Keywords
caregiving, occupational therapy, occupation, aging, individualism, socio-ecological perspective, transactional perspective
National Category
Occupational Therapy Health Sciences
Research subject
Occupational therapy
Identifiers
urn:nbn:se:ltu:diva-68563 (URN)978-91-7790-136-5 (ISBN)978-91-7790-137-2 (ISBN)
Public defence
2018-06-15, D770, Luleå, 09:00 (English)
Opponent
Supervisors
Available from: 2018-05-02 Created: 2018-05-01 Last updated: 2018-06-08Bibliographically approved

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Womack, Jennifer L.Lilja, MargaretaIsaksson, Gunilla

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