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Gaber, S. N., Guerrero, M. & Rosenberg, L. (2023). Characteristics and consequences of participatory research approaches in long-term care facilities for older adults: a meta-ethnography of qualitative studies. The Lancet, 402(Suppl. 1), S43-S43
Open this publication in new window or tab >>Characteristics and consequences of participatory research approaches in long-term care facilities for older adults: a meta-ethnography of qualitative studies
2023 (English)In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 402, no Suppl. 1, p. S43-S43Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

BACKGROUND: Participatory research approaches can potentially empower older adults and improve their quality of life and care. These include research designs, methods, and conceptual frameworks in collaboration with people directly involved and invested in the research and research outcomes. However, participatory research approaches have rarely been explored in long-term care facilities for older adults, such as nursing homes or residential care facilities. We aimed to provide increased understanding and recommendations about how participatory research approaches can be conceptualised and used in long-term care facilities for older adults.

METHODS: Inspired by Noblit and Hare (1988) and the seven phases of the eMERGe guidelines (2019), we performed a meta-ethnography (synthesis of qualitative research). We searched MEDLINE, CINAHL, ERIC, Sociological Abstracts, and Web of science in July 2021 and June 2022 for studies published between Jan 1, 2001, and June 27, 2022 (see appendix for search terms). We included peer-reviewed qualitative publications on participatory research approaches with older adults or staff in long-term care facilities, written in English. To promote rigour, a protocol was used with two authors independently screening the articles, reaching consensus through critical discussions with a third author, and using the Critical Appraisal Skills Programme (CASP) checklist. We extracted data regarding types of participatory research approaches and themes. This study is registered with PROSPERO, CRD42021275187.

FINDINGS: Ten of 1445 articles screened were included in the analysis. Using seven types of participatory research approaches, the included studies investigated experiences of approximately 153 residents and 99 staff from seven countries (Australia, Belgium, England, Guyana, Ireland, Sweden, and the Netherlands). We identified five themes, expressed as a conceptual model with recommendations: (1) participatory backdrop; (2) collaborative places; (3) seeking common ground and solidarity; (4) temporal considerations; and (5) empowerment, growth, and cultural change. We recommend researchers allow flexible time for the slow-paced progression and potentially unintended consequences of this emergent approach.

INTERPRETATION: This meta-ethnography provides an international and systematic synthesis of a diverse group of small-scale qualitative studies, which are, however, limited by insufficient reporting of participants' age, gender, or ethnicity. FUNDING: The Strategic Research Area in Health Care Science (SFO-V) at Karolinska Institutet and the Swedish Research Council for Health, Working Life and Welfare (FORTE).

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
Aged, Anthropology, Cultural, Community-Based Participatory Research, Humans, Long-Term Care, Qualitative Research, Quality of Life, cultural anthropology, human, long term care, participatory research
National Category
Nursing Geriatrics
Identifiers
urn:nbn:se:hj:diva-63026 (URN)10.1016/S0140-6736(23)02097-4 (DOI)001117474400044 ()37997085 (PubMedID)2-s2.0-85177851167 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2023-12-11 Created: 2023-12-11 Last updated: 2024-02-07Bibliographically approved
Cleeve, H., Borell, L. & Rosenberg, L. (2023). Drawing in-situ: Matters of care and representation in daily life with dementia. Qualitative Research, 23(3), 782-808
Open this publication in new window or tab >>Drawing in-situ: Matters of care and representation in daily life with dementia
2023 (English)In: Qualitative Research, ISSN 1468-7941, E-ISSN 1741-3109, Vol. 23, no 3, p. 782-808Article in journal (Refereed) Published
Abstract [en]

This article brings methodological insight into in-situ drawings as representations of daily life with dementia. As part of ethnographic fieldwork in dementia care units in a nursing home, drawings were made on site by a researcher. We suggest that the ambiguity of in-situ drawings, and the ensuing possibilities to disambiguate them, is valuable. Inspired by Asdal and Moser’s (2012) concept of “contexting,” we experimented with arranging the drawings with fieldnotes, discussing them with staff members, as well as with configuring multiple drawings and fieldnotes in sequences. This led to reflexive engagements with the drawings, creating space for discussing concerns in research practices and care practices. Switching between different forms of contexting produced tensions, revealing that what was cared for through the practices of researchers, staff members, and residents, diverged. In this way, we argue that contexting in-situ drawings may intervene in ways of knowing, caring for, and living with dementia.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
dementia, drawing, matters of care, nursing homes, representation, visual research methods
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59568 (URN)10.1177/14687941211049321 (DOI)000708622500001 ()2-s2.0-85117132628 (Scopus ID)HOA;;1733377 (Local ID)HOA;;1733377 (Archive number)HOA;;1733377 (OAI)
Funder
Swedish Research Council FormasForte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-09-04Bibliographically approved
Palmgren, M., Rosenberg, L., Gaber, S. N. & Johansson, K. (2023). Family members' reasoning in relation to pleasant environments in nursing homes. Dementia, 22(1), 235-251
Open this publication in new window or tab >>Family members' reasoning in relation to pleasant environments in nursing homes
2023 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 22, no 1, p. 235-251Article in journal (Refereed) Published
Abstract [en]

The physical environment plays an important role in how everyday life is shaped and experienced for persons living in nursing homes as well as for the residents' family and friends. Still, there is a scarcity of research exploring the perspectives of family members of residents regarding everyday life in common areas in nursing homes. In this study, we chose the term, 'a pleasant place', with the ambition of remaining open to various ideas and aspects that family members perceive as relevant when reasoning about the nursing home environment. The study aimed to explore how family members of nursing home residents reason in relation to pleasant places in nursing homes. Four focus group sessions were conducted with a total of 14 family members. Data were analysed using qualitative content analysis. The analysis resulted in four themes. 'A door ajar', highlighted the importance of a nursing home environment that provides potential opportunities for pleasurable everyday moments. 'Why does it have to be so ugly?', revealed how family members perceived institutional logics as guiding the design of the nursing homes, which were misaligned with the logics of a pleasant place. 'A place to care for?', emphasised the physical environment as an integrated aspect of care, in terms of being carefully arranged and used with sensitivity. Finally, 'allegiance to the place' showed that despite the family members' recognitions of shortcomings in the nursing home physical environments, their allegiance to the place provided a sense of the nursing home as a pleasant place. The study contributes knowledge regarding the perceived value of the design of the physical environment in nursing homes, particularly in common areas, as an integral aspect of care, and moves beyond the ideas of homelike and non-institutional nursing home environments.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
architecture, dementia, design, environment, everyday life, focus groups, life space, place, relatives, residential care facilities
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59007 (URN)10.1177/14713012221142474 (DOI)000889854600001 ()36427294 (PubMedID)2-s2.0-85142833841 (Scopus ID)HOA;;59007 (Local ID)HOA;;59007 (Archive number)HOA;;59007 (OAI)
Funder
The Kamprad Family Foundation, 20180317Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-07089
Available from: 2022-11-30 Created: 2022-11-30 Last updated: 2023-01-04Bibliographically approved
Nygård, L., Nedlund, A.-C., Mäki Petäjä Leinonen, A., Astell, A., Boger, J., Issakainen, M., . . . Ryd, C. (2023). What happens when people develop dementia whilst working?: An exploratory multiple case study. International Journal of Qualitative Studies on Health and Well-being, 18(1), Article ID 2176278.
Open this publication in new window or tab >>What happens when people develop dementia whilst working?: An exploratory multiple case study
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2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2176278Article in journal (Refereed) Published
Abstract [en]

Purpose

This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them.

Methods

A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach.

Results

The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants? experiences.

Conclusions

Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
Accessibility, accommodation, agency, Alzheimer’s disease, case study, disclosure, early onset, employment, subjective experiences, stigma
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59920 (URN)10.1080/17482631.2023.2176278 (DOI)000934371400001 ()36799733 (PubMedID)2-s2.0-85148332078 (Scopus ID)HOA;intsam;862741 (Local ID)HOA;intsam;862741 (Archive number)HOA;intsam;862741 (OAI)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2017-02303The Dementia Association - The National Association for the Rights of the Demented
Available from: 2023-02-27 Created: 2023-02-27 Last updated: 2023-03-21Bibliographically approved
Nordin, T., Rosenberg, L. & Nilsson, I. (2022). Personhood in aloneness and in affinity: satisfactory social participation among home care recipients. Scandinavian Journal of Occupational Therapy, 29(7), 563-577
Open this publication in new window or tab >>Personhood in aloneness and in affinity: satisfactory social participation among home care recipients
2022 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 29, no 7, p. 563-577Article in journal (Refereed) Published
Abstract [en]

Background: Social participation can be described as engaging in activities that provide interaction with others, and support for social participation may reduce loneliness and improve health. However, there is limited knowledge about social participation in a home care context.

Aim: To explore the perceptions and experiences of community-dwelling older adults with regard to aspects related to social participation in a home care context.

Materials and methods: Seven home care recipients, aged 79-94 years, from two Swedish municipalities participated in semi-structured interviews. The interviews were analyzed using qualitative content analysis.

Results: The study identified the central theme, Personhood in aloneness and in affinity, as important in accomplishing satisfactory social participation. The results incorporated cultivating personal interests and navigating occupations, as well as having one's needs seen and experiencing mutuality in social encounters.

Conclusions: The study nuances existing knowledge about social participation among older home care recipients, and the findings strengthen the importance of framing a home care environment where recipients can cultivate personhood and be recognized as valuable individuals with relevant needs.

Significance: This study extends current understandings of the variety and richness of the social participation and occupational engagement enjoyed by older home care recipients, to be considered in research and practice.

Place, publisher, year, edition, pages
Taylor & Francis, 2022
Keywords
Older adults, togetherness, agency, community dwelling older adults, social participation, loneliness, home care services, occupational identity, interdependence
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59562 (URN)10.1080/11038128.2020.1849394 (DOI)000593095300001 ()33245667 (PubMedID)2-s2.0-85096836015 (Scopus ID)
Available from: 2023-02-01 Created: 2023-02-01 Last updated: 2023-02-01Bibliographically approved
Johansson, K., Borell, L. & Rosenberg, L. (2022). Qualities of the environment that support a sense of home and belonging in nursing homes for older people. Ageing & Society, 42(1), 157-178
Open this publication in new window or tab >>Qualities of the environment that support a sense of home and belonging in nursing homes for older people
2022 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 42, no 1, p. 157-178Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to contribute with knowledge about how a sense of home and belonging is enacted and can be supported in everyday life, with a particular focus on the relationships that connect everyday life and the environment in nursing home contexts. The concepts 'a sense of home' and 'belonging' were chosen with the ambition to grasp values grounded in experiences and everyday practices, with an openness for various aspects that can support an enjoyable life and comfort for nursing home residents. The study focused on communal areas, e.g. dining room, kitchen, corridors and gardens, that serve as arenas where nursing home residents' everyday lives expand beyond the private room. Ethnographic methods were applied to identify and explore situations where a sense of home and belonging were enacted in nursing homes that had been acknowledged as good examples of nursing home environments. Through the analytic process, four qualities were identified: (a) a cornerstone for stability and everydayness, (b) the beating heart, (c) spatial dynamics, and (d) magnetic places. Following from the chosen methodology, the findings provide a situated understanding of how communal areas in nursing homes can invite a sense of home and belonging for the residents.

Place, publisher, year, edition, pages
Cambridge University Press, 2022
Keywords
Alzheimer's disease, belonging, dementia, environment, ethnography, nursing home, residential care home, sense of home, disease, elderly care, health services, knowledge, neurology, qualitative analysis, sense of place
National Category
Occupational Therapy Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-59567 (URN)10.1017/S0144686X20000896 (DOI)000730586000010 ()2-s2.0-85088518438 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and WelfareThe Kamprad Family Foundation
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-02-02Bibliographically approved
Sandberg, L., Borell, L. & Rosenberg, L. (2021). Risks as dilemmas for home care staff caring for persons with dementia. Aging & Mental Health, 25(9), 1701-1708
Open this publication in new window or tab >>Risks as dilemmas for home care staff caring for persons with dementia
2021 (English)In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 25, no 9, p. 1701-1708Article in journal (Refereed) Published
Abstract [en]

Objectives: Many persons with dementia live at home with support from home care services. Despite this, research is scarce concerning how risks in daily life among persons with dementia are perceived and handled by home care staff. This study aimed to explore how home care staff identify risks in the everyday lives of persons with dementia, and to inquire into how they reasoned about their own actions related to those risks.

Method: A qualitative approach was applied for the study. Both individual interviews and focus groups were conducted with home care staff (n = 23). Data was analysed using a constant comparative method.

Results: Identifying, reasoning and acting upon risks in the everyday lives of persons with dementia were related to several dilemmas for the home care staff. These dilemmas are described and elaborated on in three categories: 1) Strategies for tracking risks, 2) Dilemmas concerning where to draw the line and deciding when to act, and 3) Dilemmas when acting on risks.

Conclusion: The study provides new knowledge about the dilemmas that staff in home care services may face and how they reason about managing risks in the homes of persons with dementia. The study shows that the staff had to weigh risk and safety against the autonomy of persons with dementia. Based on these findings, we want to highlight the importance of competence among home care staff and the organizational conditions that must exist in order to manage the challenges of risky situations.

Place, publisher, year, edition, pages
Taylor & Francis, 2021
Keywords
activities of daily living, Alzheimer’s disease, Dementia, home care services, risk assessment, home care, human, information processing, qualitative research, Focus Groups, Humans
National Category
Occupational Therapy Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-59569 (URN)10.1080/13607863.2020.1758914 (DOI)000531959300001 ()32336124 (PubMedID)2-s2.0-85085031562 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-02-02Bibliographically approved
Mondaca, M., Johansson, K., Josephsson, S. & Rosenberg, L. (2020). In search for the “humane”: staffs’ perspectives on everyday activities in a nursing home. Aging & Mental Health, 24(4), 679-688
Open this publication in new window or tab >>In search for the “humane”: staffs’ perspectives on everyday activities in a nursing home
2020 (English)In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 24, no 4, p. 679-688Article in journal (Refereed) Published
Abstract [en]

Objectives: To better understand how a dialogue about the influence of nursing home residents on their everyday activities evolve among diverse practitioners and to identify the consequences of such an understanding in practice.

Methods: Inspired by a collaborative approach, five workshops, one focus group and follow up interviews were conducted. The participants were 19 diverse practitioners. Analysis followed a dialogical approach.

Findings: Tensions, opportunities and challenges were articulated and discussed during the workshops and are developed in: a) Bypassing the “humane”? The dilemma between using shields preventing engagement or acting in a clandestine manner b)“What is our stance?” Seeking common ground on which to stand regarding everyday activities and c) Recognising expertise and seeking connections.

Discussion: For the staff, acting in a clandestine manner seems to create ways of enabling “humane” practices towards nursing home residents. The “clandestine manners” seem to be grounded in an effort on the part of the staff to make sense of the everyday activities for the nursing home residents. These “clandestine manners” could be seen as responses to institutional routines and a lack of common ground on the understanding of everyday activities in the context of nursing homes.

Place, publisher, year, edition, pages
Taylor & Francis, 2020
Keywords
identity, long-term care, Occupation, participatory, well-being, adult, article, daily life activity, follow up, human, interview, nursing home patient, physician, staff, standing, tension, wellbeing, health care delivery, health care personnel, nursing home, quality of life, questionnaire, Delivery of Health Care, Health Personnel, Humans, Nursing Homes, Skilled Nursing Facilities, Surveys and Questionnaires
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59570 (URN)10.1080/13607863.2019.1574709 (DOI)000522649000020 ()30739478 (PubMedID)2-s2.0-85061441967 (Scopus ID)
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-02-02Bibliographically approved
Cleeve, H., Borell, L. & Rosenberg, L. (2020). (In)visible materialities in the context of dementia care. Sociology of Health and Illness, 42(1), 126-142
Open this publication in new window or tab >>(In)visible materialities in the context of dementia care
2020 (English)In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566, Vol. 42, no 1, p. 126-142Article in journal (Refereed) Published
Abstract [en]

Seemingly mundane materialities are intertwined with important, but often neglected, care interactions. It has been argued that if healthcare professionals paid more attention to the roles materialities can have, everyday routines could become important occasions for care. In response to such proposals, we argue that it is relevant to examine how materialities are currently understood. In this article, we explore materialities as part of work in a dementia unit. Using abstracted illustrations of everyday materialities to elicit reflections, we conducted 11 individual interviews with certified nursing assistants. Through phenomenographic analysis we explain our findings as three different categories conceptualising understandings of materialities as: ‘tools for care’, ‘a set of principles for care’ and ‘caring relationships’. Our analysis indicates that understanding materialities as instruments was reinforced and made visible through the healthcare organisation while understanding materialities as part of specific relationships with residents appeared informal and less visible. How materialities were understood seemed to have several implications for residents. While care practices could benefit from nursing assistants’ abilities to alternate between ways of understanding materialitites, such competence seemed dependent on how professional care was organised, structured and materialised.

Place, publisher, year, edition, pages
John Wiley & Sons, 2020
Keywords
Alzheimer's disease, care practice, dementia, illustration, material culture, phenomenography, adult, female, human, interview, male, middle aged, nursing, nursing home, patient care, Humans, Interviews as Topic, Nursing Assistants, Nursing Homes, Patient-Centered Care
National Category
Occupational Therapy Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-59571 (URN)10.1111/1467-9566.12988 (DOI)000506959200009 ()31562648 (PubMedID)2-s2.0-85073956451 (Scopus ID)
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-02-02Bibliographically approved
Mondaca, M., Josephsson, S., Borell, L., Katz, A. & Rosenberg, L. (2019). Altering the boundaries of everyday life in a nursing home context. Scandinavian Journal of Occupational Therapy, 26(6), 441-451
Open this publication in new window or tab >>Altering the boundaries of everyday life in a nursing home context
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2019 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 26, no 6, p. 441-451Article in journal (Refereed) Published
Abstract [en]

Background: Despite global and local policy frameworks that explicitly aim to privilege participation and active engagement of older adults living in nursing homes, this group often has limited possibilities to engage in occupations and to have influence in their everyday lives. Aim: To explore how older adults’ engagement and influence in an occupation can emerge in everyday life in a nursing home setting.

Material and methods: A participatory qualitative approach was applied. Older adults living in a nursing home participated in a Book Club that was created collaboratively between researchers, residents, and the nursing home community.

Findings: The analysis identified qualities of altering the boundaries of everyday life and addressing the uncertain conditions for influence and engagement as processes actualized by the residents when engaging in the Book Club. Further analysis identified how these processes involved ordinariness, familiarity, fellowship, and connectedness.

Conclusion and Significance: Engagement and influence in occupation in a nursing home is possible when enabling partnerships and resourcefulness among the residents. However, such enablement is not guaranteed and needs to be actively upheld by the nursing home community in order to build practices aligned with policy frameworks of participation.

Place, publisher, year, edition, pages
Taylor & Francis, 2019
Keywords
hermeneutic analysis, older adults, participatory methods, persons with dementia, residential care facilities, third space, aged, female, human, human relation, leisure, male, nursing home, occupational therapy, quality of life, very elderly, Aged, 80 and over, Humans, Interpersonal Relations, Leisure Activities, Nursing Homes
National Category
Occupational Therapy
Identifiers
urn:nbn:se:hj:diva-59572 (URN)10.1080/11038128.2018.1483426 (DOI)000466582700005 ()29938554 (PubMedID)2-s2.0-85048985659 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2023-02-02 Created: 2023-02-02 Last updated: 2023-02-02Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-1727-369X

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