Phronesis: Recognising a neglected dimension of knowledge within occupational therapy research.

BACKGROUND: Phronesis is a way of knowing, implying wisdom, experiences, and reflections that guide our judgements. Phronesis, important for learning, is a neglected form of knowledge when applied to research. AIM: To examine how phronesis is conceptualised and practiced in three research projects. METHOD: Data from eight interviews with researchers involved in three research projects was generated. The interview material was analysed. A theoretical matrix of contemporary understanding of phronesis was applied to the material. RESULT: Examples of phronesis from three research projects in occupational therapy are presented according to categories of contemporary phronesis; acknowledging embodiment, embracing humility, using perceptiveness, and practicing reflexivity. SIGNIFICANCE: This unique approach of analysing research projects contributes to the understanding of phronesis and its implications for research, providing valuable insights into the researchers' praxis in their respective projects. CONCLUSION: There is a need for a greater recognition of phronesis as a dimension of knowledge within all types of research, and within the discipline. By not recognising phronesis as a legitimate form of knowledge, the discipline perpetuates a superiority of knowledge from episteme that dominates our ways of learning about the world around us and where the type of knowledge gleaned from phronesis is consequently marginalised.

Characteristics and consequences of participatory research approaches in long-term care facilities for older adults: a meta-ethnography of qualitative studies.

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).

What happens when people develop dementia whilst working? An exploratory multiple case study.

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.

Family members' reasoning in relation to pleasant environments in nursing homes.

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.

Personhood in aloneness and in affinity: Satisfactory social participation among home care recipients.

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.

Risks as dilemmas for home care staff caring for persons with dementia.

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.

In search for the "humane": staffs' perspectives on everyday activities in a nursing home.

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.

(In)visible materialities in the context of dementia care.

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.

Altering the boundaries of everyday life in a nursing home context.

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.

Home care services for older clients with and without cognitive impairment in Sweden.

Little is known about the types of home care services granted to older clients in Sweden. The objectives of this study were to: (a) identify and describe the range of granted home care services and service hours; (b) compare services granted for clients with and without documented cognitive impairment; and (c) examine associations between the range of granted home care services and factors related to cognitive impairment and demographical characteristics. The study design was descriptive and cross-sectional. The data, included records of granted home care services for clients age 65+ with (n = 43) and without (n = 88) cognitive impairment documented by the local municipality assessors, collected from one agency in Sweden during a 2-month period in 2015. Data analyses resulted in an overview of the range of home care services divided into two categories: personal care and service. In the personal care category, the median was 3 for types of services (range 0-12), and shower (n = 69; 52.7%) was the most common service. In the service category, the median was 5 for types of services (range 0-10), and cleaning the household (n = 103; 78.6%) was the most common service. The median for service hours was 27 hr per month (range 2.5-127.5). Logistic regression models revealed that cognitive impairment was associated with a higher number of services in the personal care category and a higher number of hours per month. Living alone was associated with a higher number of services in the service category. In conclusion, a wide range of home care services were provided for clients who have complex needs in daily life. Home care services were granted to clients with cognitive impairment and to a greater extent with clients who were living alone.

Perpetuating harms from isolation among older adults with cognitive impairment: observed discrepancies in homecare service documentation, assessment and approval practices.

BACKGROUND: Older persons with cognitive impairment (CI) risk social isolation. Strong evidence shows that perceived loneliness, or inadequate social networks, triggers and increases health problems. How homecare systems address social participation remains unknown; anecdotal data suggests there are significant gaps. This study's objective was to identify and describe how the assessors of homecare needs document social participation among persons with CI and how their documentation corresponds with the services actually provided to meet social needs. The research questions were: How and what kinds of social participation needs are documented on need assessment forms? What types of homecare services (with a social focus) are documented and approved? How are specified needs in social participation profiles addressed by a homecare service? METHODS: Descriptive data from need assessment forms and their attached care plans for all applicants aged 65+ were collected during a 2 month period from a large homecare agency serving a municipality in Sweden. Persons with documented CI (n = 43) in the group were identified. Qualitative data analysis was conducted to examine the research questions. RESULTS: Social participation factors were not documented consistently. The relationship between recognition of limitations to social participation and approval of service eligibility was not consistent. Social participation was designated by references to social status, sometimes by social network size, and occasionally by limitations to social participation. The range of approved homecare services (with social focus) covered services such as day care center visits or companionship. Three profiles of social participation were identified: clients with, (a) no participation limitations; (b) potential limitations; and (c) marked limitations. CONCLUSION: Given the known health harms from social isolation and the high risk of isolation among older persons with CI, this novel study's documentation of inadequate and inconsistent information in homecare social need assessments and services is sobering. The findings suggest a pressing need for initiatives to formulate best practices and standards to ensure alignment of care service systems to the health needs of the growing group of aging individuals with CI.

Job strain: a cross-sectional survey of dementia care specialists and other staff in Swedish home care services.

INTRODUCTION: An increasing number of older persons worldwide live at home with various functional limitations such as dementia. So, home care staff meet older persons with extensive, complex needs. The staff's well-being is crucial because it can affect the quality of their work, although literature on job strain among home care staff is limited. AIM: To describe perceived job strain among home care staff and to examine correlations between job strain, personal factors, and organizational factors. METHODS: The study applied a cross-sectional survey design. Participants were dementia care specialists who work in home care (n=34) and other home care staff who are not specialized in dementia care (n=35). The Strain in Dementia Care Scale (SDCS) and Creative Climate Questionnaire instruments and demographic variables were used. Descriptive and inferential statistics (including regression modeling) were applied. The regional ethical review board approved the study. RESULTS: Home care staff perceived job strain - particularly because they could not provide what they perceived to be necessary care. Dementia care specialists ranked job strain higher (m=5.71) than other staff members (m=4.71; p=0.04). Job strain (for total score and for all five SDCS factors) correlated with being a dementia care specialist. Correlations also occurred between job strain for SDCS factor 2 (difficulties understanding and interpreting) and not having Swedish as first language and SDCS factor 5 (lack of recognition) and stagnated organizational climate. CONCLUSION: The study indicates that home care staff and particularly dementia care specialists perceived high job strain. Future studies are needed to confirm or reject findings from this study.

Everyday technology use among older adults in Sweden and Japan: A comparative study.

BACKGROUND: As context may impact everyday technology (ET) use it is relevant to study this within different contexts. AIMS: To examine the usefulness of the Everyday Technology Use Questionnaire (ETUQ) in different contexts by investigating and comparing (1) the level of challenge of ETs in the ETUQ and (2) the relevance of and perceived ability to use ET in samples of Swedish and Japanese older adults. MATERIALS AND METHODS: The Swedish and the Japanese samples (n = 86/86) were interviewed using the ETUQ about relevance of and perceived ability to use ET. Data were analyzed using Rasch analysis, chi square and a general linear model. Moreover, Differential Item Functioning (DIF) was investigated. RESULTS: The hierarchy of ETs' level of challenge was generally stable in the two contexts. On group-level, the relevance was somewhat higher and the perceived ability to use ET significantly higher in the Swedish sample than in the Japanese. CONCLUSIONS AND SIGNIFICANCE: The similarities and differences between the technological landscapes of Sweden and Japan could be detected by ETUQ, demonstrating its usefulness in both countries. The potential causes to the differences in relevance of and perceived ability to use ET between older adults in Sweden and Japan need further exploration.

LGBQ-Specific Elderly Housing as a "Sparkling Sanctuary": Boundary Work on LGBQ Identity and Community in Relationship to Potential LGBQ-Specific Elderly Housing in Sweden.

This study explored how boundaries in relationship to community and identity were created and negotiated among lesbian, gay, bisexual, and queer (LGBQ) people within the framework of picturing LGBQ-specific elderly housing as a housing alternative in older age, by applying focus group methodology. "An island as a sparkling sanctuary" was identified as a metaphor for how symbolic resources defining the LGBQ community can be manifested in LGBQ-specific qualities of elderly housing. The boundary work underlying this manifestation included elaborations on the dilemma between exclusiveness and normality. The findings illustrate further how symbolic resources and collective identities were developed through dialectic interplay between internal and external definitions. Further, the findings show how boundary work generated shared feelings of similarity and group membership. The associated symbolic and social resources not only served to deal with difficult situations but also to manifest LGBQ identity and sense of community as a "gold medal."

Influencing everyday activities in a nursing home setting: A call for ethical and responsive engagement.

This study focuses on influence that older adults, living in nursing homes, have over everyday activities. Everyday activities are key to sustain a sense of stability, predictability, and enjoyment in the local world of people's everyday and therefore a critical dimension of the person-centeredness framework applied within gerontology. This narrative ethnographic study aimed to shed light on how influence can be situated contextually, and how it can emerge through activities as well as how it is negotiated in everyday by frail older adults living in a nursing home. Residents, staff members, and significant others from one nursing home in an urban area of Sweden participated in this study. Data were gathered through fieldwork, including participant observation and formal and informal conversations during a period of 6 months. Data were analyzed through a narrative interpretative approach. The findings are presented in narrative form as exemplars. The exemplars-Craquelures as justification, Seeking a place for other life worlds and An almost perfect trip-reveal a gap between the client-centeredness framework and lived experiences regarding older adults' influence in everyday activities. The role of everyday activities in the context of frailty is discussed in terms of ethical and responsive engagement, and implications for health-care practices are considered.

Everyday technology use among older adults in Sweden and Portugal.

BACKGROUND: Technology use is relevant for engaging in everyday occupations and aging in place and difficulties might limit participation. AIM: The aim of the present study was two-fold: to investigate the internal scale validity of the Everyday Technology Use Questionnaire (ETUQ) in a matched Portuguese and a Swedish sample of older adults without known cognitive impairments and to compare everyday technology use (i.e., the relevance of Everyday Technology (ET) and perceived difficulty of using ET). METHODS: The Rasch rating scale model was used to investigate the psychometric properties of the data from the two countries. Analyses were then used to compare the samples. RESULTS: There is evidence of internal scale and person response validity in the Swedish and Portuguese ETUQ datasets. The Swedish sample demonstrated almost 25% more ETs to be relevant, as compared to the Portuguese sample (p < .05). The samples' means of perceived difficulty in using ETs were similar. CONCLUSIONS: The results support that the ETUQ is a valid assessment for measuring the relevance of and perceived difficulty of ET use and is able to detect differences and similarities between older adults in these European countries in relation to ET use in the home and society.

Sustaining care for a parent with dementia: an indefinite and intertwined process.

This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values, and "flying blind" in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents' needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.

Differences in the use of everyday technology among persons with MCI, SCI and older adults without known cognitive impairment.

BACKGROUND: To use valid subjective reports sensible to cognitive decline is vital to identify very early signs of dementia development. Use of everyday technology (ET) has been shown to be sensitive to differentiate adults with mild cognitive impairment (MCI) from controls, but the group with subjective cognitive impairment (SCI) has not yet been examined. This study aims to investigate and compare self-perceived ability in ET use and number of ETs reported as actually used in a sample of older adults with SCI, MCI, and older adults with no known cognitive impairment, i.e. METHODS: Older adults with MCI (n = 29), SCI ( n = 26), and controls (n = 30) were interviewed with the short version of the Everyday Technology Use Questionnaire (S-ETUQ) to capture self-perceived ability in ET use and number of ETs used. To generate individual measures of ability to use ET, Rasch analysis was used. The measures were then compared group-wise using ANCOVA. The numbers of ETs used were compared group-wise with ANOVA. RESULTS: Controls versus SCI and MCI differed significantly regarding ETs reported as used, but not SCI versus MCI. Similarly, in ability to use ET, controls versus SCI and MCI differed significantly but not SCI versus MCI. CONCLUSIONS: The significantly lower numbers of ETs reported as actually used and the lower ability in SCI and MCI groups compared to controls suggest that ET use is affected already in very minor cognitive decline. This indicates that self-reported ET use based on the S-ETUQ is sensitive to detect changes already in SCI.

Risks in situations that are experienced as unfamiliar and confusing - the perspective of persons with dementia.

An increasing number of people with dementia are ageing at home in Sweden and in other countries. In order to meet the safety requirements, knowledge about how persons with dementia experience risks is required. The aim of the study was to explore and better understand how persons with dementia, living at home, experience risks in their daily life and how they handle these situations. Twelve persons with dementia were interviewed using open-ended questions, and the data were analyzed using a content analysis approach. Findings showed that participants experienced situations fraught with risks in their daily life as unfamiliar and confusing. Previously familiar places became unfamiliar to them, and details did not come together. They were uncertain about what actually had happened. How the participants handled these situations in order to reduce the risks are described.

Learning and knowing technology as lived experience in people with Alzheimer's disease: a phenomenological study.

OBJECTIVES: Most research on learning in the field of dementia has studied teaching approaches, while little is known about learning as experienced and enacted by the people with dementia. The aim was to explore the lived experience of learning and maintaining knowledge related to technology among people with mild to moderate stage dementia. METHOD: Seven persons with dementia were interviewed in-depth, and data were analyzed with a phenomenological approach. RESULTS: The participants positioned themselves on a continuum from 'Updating and expanding is not for me' to 'Updating and expanding is really for me'. They used different ways of learning in their everyday life - relying on one's habituated repertoire of actions, on other people or on technology itself, or belonging to a learning context. CONCLUSIONS: We have much to gain from better understanding of how people with dementia strive to learn and maintain their skills and knowledge related to technology. This is particularly important as they seem to use other approaches than those employed in current teaching methods. The necessity of learning stands out particularly when it comes to the interaction with the current multitude and ever-changing designs of technologies, including assistive technologies developed specifically to support people with dementia.