Maneuvering the care puzzle: Experiences of participation in care by frail older persons with significant care needs living at home

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ABSTRACT

Purpose

Despite evidence that older persons want to be involved in care, little is known about how frail older people with significant care needs living at home experience participation in care provided by different stakeholders. This study investigates the experiences of participation in care by older people following their involvement in an intervention of a health care model called Focused Primary care (FPC).

Methods

Individual semi-structured interviews were conducted with 20 older persons in five municipalities in Sweden.

Results

The results show that older persons highlighted opportunities and limitations for participation on a personal level i.e., conditions for being involved in direct care and in relation to independence. Experiences of participation on organizational levels were reported to a lesser degree. This included being able to understand the organizational system underpinning care. The relational dimensions of caregiving were emphasized by the older persons as the most central aspects of caregiving in relation to participation.

Conclusions

Primary care should involve older persons more directly in planning and execution of care on all levels. An ongoing connection with one specialized elderly team and a coordinating person in Primary care who safeguards relationships is important for providing participation in care for frail older persons with significant care needs living at home.

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Most cited references 37

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Methodological challenges in qualitative content analysis: A discussion paper.

Berit Lundman, Ulla Graneheim, Britt-Marie Lindgren (2017)

This discussion paper is aimed to map content analysis in the qualitative paradigm and explore common methodological challenges. We discuss phenomenological descriptions of manifest content and hermeneutical interpretations of latent content. We demonstrate inductive, deductive, and abductive approaches to qualitative content analysis, and elaborate on the level of abstraction and degree of interpretation used in constructing categories, descriptive themes, and themes of meaning. With increased abstraction and interpretation comes an increased challenge to demonstrate the credibility and authenticity of the analysis. A key issue is to show the logic in how categories and themes are abstracted, interpreted, and connected to the aim and to each other. Qualitative content analysis is an autonomous method and can be used at varying levels of abstraction and interpretation.

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The meaning of "aging in place" to older people.

Janine Wiles, Annette Leibing, Nancy Guberman … (2012)

This study illuminates the concept of "aging in place" in terms of functional, symbolic, and emotional attachments and meanings of homes, neighbourhoods, and communities. It investigates how older people understand the meaning of "aging in place," a term widely used in aging policy and research but underexplored with older people themselves. Older people (n = 121), ranging in age from 56 to 92 years, participated in focus groups and interviews in 2 case study communities of similar size in Aotearoa New Zealand, both with high ratings on deprivation indices. The question, "What is the ideal place to grow older?" was explored, including reflections on aging in place. Thematic and narrative analyses on the meaning of aging in place are presented in this paper. Older people want choices about where and how they age in place. "Aging in place" was seen as an advantage in terms of a sense of attachment or connection and feelings of security and familiarity in relation to both homes and communities. Aging in place related to a sense of identity both through independence and autonomy and through caring relationships and roles in the places people live. Aging in place operates in multiple interacting ways, which need to be taken into account in both policy and research. The meanings of aging in place for older people have pragmatic implications beyond internal "feel good" aspects and operate interactively far beyond the "home" or housing.

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Approaches to sampling and case selection in qualitative research: examples in the geography of health.

W Gesler, Kathleen Curtis, Robert Washburn … (2000)

This paper focuses on the question of sampling (or selection of cases) in qualitative research. Although the literature includes some very useful discussions of qualitative sampling strategies, the question of sampling often seems to receive less attention in methodological discussion than questions of how data is collected or is analysed. Decisions about sampling are likely to be important in many qualitative studies (although it may not be an issue in some research). There are varying accounts of the principles applicable to sampling or case selection. Those who espouse 'theoretical sampling', based on a 'grounded theory' approach, are in some ways opposed to those who promote forms of 'purposive sampling' suitable for research informed by an existing body of social theory. Diversity also results from the many different methods for drawing purposive samples which are applicable to qualitative research. We explore the value of a framework suggested by Miles and Huberman [Miles, M., Huberman,, A., 1994. Qualitative Data Analysis, Sage, London.], to evaluate the sampling strategies employed in three examples of research by the authors. Our examples comprise three studies which respectively involve selection of: 'healing places'; rural places which incorporated national anti-malarial policies; young male interviewees, identified as either chronically ill or disabled. The examples are used to show how in these three studies the (sometimes conflicting) requirements of the different criteria were resolved, as well as the potential and constraints placed on the research by the selection decisions which were made. We also consider how far the criteria Miles and Huberman suggest seem helpful for planning 'sample' selection in qualitative research.

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Author and article information

Journal

Journal ID (nlm-ta): Int J Qual Stud Health Well-being

Journal ID (iso-abbrev): Int J Qual Stud Health Well-being

Title: International Journal of Qualitative Studies on Health and Well-being

Publisher: Taylor & Francis

ISSN (Print): 1748-2623

ISSN (Electronic): 1748-2631

Publication date (Electronic, pub): 15 July 2021

Publication date (Electronic, collection): 2021

Volume: 16

Issue: 1

Electronic Location Identifier: 1937896

Affiliations

[a ]Department of Culture and Society – Division Social Work, Linköping University; , Linköping, Sweden

[b ]Department of Culture and Society – Division of Ageing and Social Change, Linköping University; , Norrköping, Sweden

[c ]Department of Health, Medicine and Caring Sciences, Linköping University; , Linköping, Sweden

[d ]Department of Activity and Health and Department of Health, Medicine and Caring Sciences, Linköping University; , Linköping, Sweden

[e ]Department of Rehabilitation Medicine and Department of Health, Medicine and Caring Sciences, Linköping University; , Linköping, Sweden

Author notes

CONTACT Anna Olaison anna.olaison@ 123456liu.se Department of Culture and Society – Division Social Work, Linköping University; , Linköping, Sweden

Author information

Anna Olaison https://orcid.org/0000-0001-9293-4932

Elisabet Cedersund https://orcid.org/0000-0002-1443-5895

Jan Marcusson https://orcid.org/0000-0002-6452-3930

Annette Sverker https://orcid.org/0000-0002-1188-4273

Article

Publisher ID: 1937896

DOI: 10.1080/17482631.2021.1937896

PMC ID: 8284120

PubMed ID: 34261426

SO-VID: da028544-e675-4d96-9efc-da2c6d783e19

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Maneuvering the care puzzle: Experiences of participation in care by frail older persons with significant care needs living at home

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ABSTRACT

Purpose

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Irish Journal of Paramedicine

Most cited references 37

Methodological challenges in qualitative content analysis: A discussion paper.

The meaning of "aging in place" to older people.

Approaches to sampling and case selection in qualitative research: examples in the geography of health.

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