The use of home care as relational work: outlines for a research programme.

PURPOSE: Care has been theorized as a relational practice, but the research has focused on providers rather than users. Older care users have been cast in a passive role, and their relational activities to help with the provision of their care or to support those who provide it are underexplored. The purpose of this study is to develop knowledge about home care use as a form of relational 'work'. METHODS: The data for the study consists of 34 qualitative interviews with home care users in Sweden and 15 observations of care provision. The data has been coded using thematic analysis. RESULTS: The analysis identifies two overlapping forms of relational work done by care users in the home care context: care-centred work, where care users work to facilitate care situations that were positive for staff and for the provision of care; and person-centred work, where care users work to foster personal relations by focusing on care staff as unique individuals. CONCLUSIONS: The article proposes a research programme on relational work by care users, prompted by the finding that such efforts seem central for the understanding of eldercare in a variety of contexts.

"Why involve older people in research?" Revisiting Alan Walker's earlier editorial based on recent experiences from the UserAge research programme.

Posed 16 years ago in a much-cited editorial by gerontologist, Alan Walker, "Why involve older people in research?" is a question that has since inspired researchers in many countries and from diverse disciplines. In Sweden, researchers and older people have been collaborating in the 6-year UserAge research programme, focusing on user involvement in research on ageing and health, UserAge aims at contributing to an in-depth understanding of the challenges and benefits of user involvement in different phases of the research process. Approaching programme completion, the authors take the opportunity to dwell upon current reasons for and modes of user involvement in ageing research in light of the argument originally put forward by Alan Walker back in 2007.

Home Care in the Daily Lives of Older People: Protocol for an Ethnographic Two-Year Longitudinal Study.

BACKGROUND: Research on eldercare has been dominated by a provider-oriented perspective, concerned with the conditions and views of care providers. There are striking differences compared with the field of disability studies, where help is framed as part of a larger project of having a daily life and being included in society. Pilot interviews indicate that older people develop active strategies to make care work. These include practical preparations, emotional activities such as showing an interest in staff members' lives, or rhetorical skills in asking for help. OBJECTIVE: The aim of this project is to develop empirical and theoretical knowledge of eldercare as a relational practice, accomplished by older people in their daily lives. This perspective will also offer an alternative to ongoing attempts to reduce the user perspective to an issue about older people acting as customers in a market. METHODS: The project will map, investigate, and follow up on care use from the perspective of care users. The project has an ethnographic 2-year longitudinal approach. Data consist of interviews and participant observations with 35 persons (home care users and cohabitating partners) and a diary study with additional 10 care users. Inclusion criteria are people 65 years or older with home care provided by needs assessors. It is preferred that they have had home care between 6 months and 2 years in order to follow a progression in roles, identities, and strategies within home care use. RESULTS: Between May and October 2022, 25 interviews with home care users were conducted. Data collection with follow-up interviews and observations, analysis, and reporting of findings will be completed by December 2024. CONCLUSIONS: By studying care use in the context of older people's lives the project will add important knowledge about the strategies and adjustments older people apply to make care arrangements work. A user-oriented perspective will further the understanding of how power relations play out in home care over time in relation to the formal rights, categorical belongings, and established norm systems that place the user in superior or subordinate positions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/42160.

Age-based entitlement: An ageist practice or a tool for combatting ageism?

Researchers in gerontology have addressed the way age-based arrangements may communicate stereotypical and devaluing images of older people, thereby linking high age to frailty and dependence. The present article considers proposed reforms to the Swedish eldercare system designed to guarantee people over 85 the right to move into a nursing home regardless of their needs. The purpose of the article is to investigate older people's views on age-based entitlement in light of this proposal. What might the consequences of implementing the proposal be? Does it communicate devaluing images? Do the respondents consider it a case of ageism? The data consists of 11 peer group interviews with 34 older individuals. Bradshaw's taxonomy of needs was used to code and analyze data. Four positions on the proposed guarantee were identified: care should be arranged (1) according to needs, not age; (2) according to age as a proxy for needs; (3) according to age, as a right; and (4) according to age, to combat "fourth ageism", meaning ageism directed towards frail older persons, i.e. persons in the fourth age. The notion that such a guarantee might constitute ageism was dismissed as irrelevant, while difficulties in getting access to care were presented as the real discrimination. It is theorized that some forms of ageism posited as theoretically relevant may not be experienced as such by older people themselves.

Crime, Disorder, and Territorial Stigmatization: Older Adults Living in Deprived Neighborhoods.

BACKGROUND AND OBJECTIVES: The existence of social problems, crime, and a diminishing sense of community are acknowledged challenges to residents of deprived neighborhoods. In research on deprived neighborhoods in Sweden, the perspectives of young residents and adults of working age dominate. This study explores how older adults in deprived neighborhoods in Sweden experience crime and disorder, and how they adapt and respond to these problems and the neighborhood's poor reputation. RESEARCH DESIGN AND METHODS: Semistructured interviews were conducted with 22 older adults who had lived 5 years or more in deprived areas of two cities in Sweden. Data were analyzed using Hirschman's theory of exit, voice, and loyalty with a thematic analysis. RESULTS: Most residents had positive things to say about their homes and neighborhoods, even if criminal acts such as shootings, drug dealing, arson, burglary, and knife attacks were part of everyday life. The residents attempted to manage these events with various strategies. Exit strategies included relocation and forms of adaptation and detachment. They used several voice strategies to actively try to solve the problems and engage with the community. Loyalty strategies-and relativizing-were used to defend their neighborhood reputation. DISCUSSION AND IMPLICATIONS: The findings show we should move on from generalized notions of older adults as passive victims of their environment and highlight that some older adults are active agents in building communities in deprived neighborhoods. City improvement programs should extend support to older adults who wish to engage. Approaches are identified which may strengthen older adults' contributions in such neighborhoods.

A balance between putting on the researcher's hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research.

BACKGROUND: Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers' views of involving informal carers in health and social care research. METHODS: Eleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology. RESULTS: The qualitative data analysis resulted in two interpretative repertoires describing researchers' views of involving informal carers in research, "Philosophy of Science" and "Personal relationships and growth". Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being "unprofessional". Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level. CONCLUSIONS: Researchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

Older Adults Living in Disadvantaged Areas: Protocol for a Mixed Methods Baseline Study on Homes, Quality of Life, and Participation in Transitioning Neighborhoods.

BACKGROUND: Swedish policy states that older adults should be able to age safely with continued independence and lead active lives. However, this plays out differently in different Swedish municipalities depending upon degree of demographic change, globalization, and urbanization. Internationally, older adults living in disadvantaged areas have worse physical and mental health, activity restrictions, and reduced life expectancy. In Sweden, research on how disadvantaged areas impact older adults' quality of life is virtually nonexistent. We argue that disadvantaged areas exist in both urban and rural contexts. OBJECTIVE: We aimed to investigate how older adults' homes and neighborhoods influence their community participation, quality of life, identity, and belonging in urban and rural disadvantaged areas in Sweden, and how these person-context dynamics are experienced by older adults in transitioning neighborhoods. METHODS: The study has a mixed methods design and includes 3 phases. Adults 65 years and older living in certain urban and rural disadvantaged areas in the south of Sweden will be included. Phase 1 is an interview study in which qualitative data are collected on neighborhood attachment, identity, and belonging through semistructured interviews and photo-elicitation interviews with 40 subjects. A variety of qualitative data analysis procedures are used. In phase 2, a survey study will be conducted to explore associations between observable and self-rated aspects of housing and neighborhood (physical, social, and emotional), participation, and quality of life; 400 subjects will be recruited and added to the 40 phase-1 subjects for a total of 440. The survey will include standardized measures and study-specific questions. Survey data will be analyzed with mainstream statistical analyses and structural equation modeling to understand the interactions between quality of life, home and neighborhood factors, and sociodemographic factors. In phase 3, the integration study, survey data from the 40 participants who participated in both data collections will be analyzed together with qualitative data with a mixed methods analysis approach. RESULTS: As of the submission of this protocol (August 2022), recruitment for the interview study is complete (N=39), and 267 participants have been recruited and have completed data collection in the survey study. We expect recruitment and data collection to be finalized by December 2022. CONCLUSIONS: With an increasing proportion of older adults, an increasing number of disadvantaged areas, and an increasing dependency ratio in more than 50% of Swedish municipalities, these municipalities are transforming and becoming increasingly segregated. This study will add unique knowledge on what it is like to be older in a disadvantaged area and deepen knowledge on housing and health dynamics in later life. Further, the design of the current study will allow future follow-up studies to facilitate longitudinal analysis (if funding is granted) on aging in a transforming societal context. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41255.

Finding a fair deal: Policies on alcohol and drugs at "wet" eldercare facilities.

"Wet" eldercare facilities for people who age with long-term substance use problems and complex needs exist in several countries. Residents are accepted as active users of alcohol and drugs, and while the media has presented the permissive policies of the facilities in a positive light, others have described these policies as harmful. The aim of this article is to analyze residents' and staff members' understanding of alcohol and drug policies in wet eldercare facilities. Is there a shared understanding? What reasons do they give in support or criticism of the policies? The study is based on qualitative interviews with 42 residents and 21 staff members at four Swedish eldercare facilities for people who are aging with long-term substance use problems. The research team identified central themes using qualitative content analysis. The analysis shows that both residents and staff cite self-determination and the need for pragmatic trade-offs as the reasons for a policy whereby residents can consume alcohol in the privacy of their own rooms but not in common areas. The analysis did not support claims that the permissive approach resulted in reduced consumption of alcohol, and this demonstrates the need to balance self-determination with the risk of harm. Residents' general appreciation of their facility colored their views on alcohol and drug policies, which shows how important it is to provide residents with positive conditions and experiences so that they can balance the rules that make the facilities tolerable places to live.

Out of the ordinary: Media reports on wet eldercare facilities.

The aim of this article was to investigate presentations of "wet" eldercare facilities in Sweden, a type of facility that provides care for older people with long-term alcohol problems and where the consumption of alcohol is allowed. Wet eldercare facilities challenge traditional Swedish policy on alcohol treatment, and their approach constitutes a breach of mainstream policies on alcohol and treatment, where abstinence is a goal. Data for the study consisted of articles that reported on two nursing homes in the City of Gothenburg during 1995-2017, a total of 65 articles. Qualitative content analysis was used to identify relevant themes. The study revealed that with the exception of a media scandal at one of the facilities in 2017, reports were mostly positive. Residents were portrayed as "chronic" alcoholics (kroniker) who were resistant to treatment, but in need of the type of permissive approach and care that was provided at the facilities. In the article we refer to this as a framework of matched arrangements. Readers of several media reports were invited to see the person behind the scruffy addict and the approach was in some cases developed into a critique of unrealistic ambitions of mainstream treatment. This critique was, however, not developed into a coherent framework. A conclusion was that the surprisingly positive portrayal of residents and descriptions of the facilities as "different" should be understood in relation to the way the media creates interest by reporting on events and arrangements that appear as out of the ordinary.

Understanding User Involvement in Research in Aging and Health.

User involvement in research is advocated as an avenue for efficient societal developments. In this article, we identify potentials, problems, and challenges related to research on aging and health, and identify and illustrate research priorities using an evolving research program as an example. Involving user representatives in the development phase, the UserAge program engages researchers at four universities in Sweden. The program builds upon previous and ongoing research with user involvement. The goals are to maximize the impact of user involvement, enhance the execution of high-quality research, increase the knowledge about what difference user involvement can make, and evaluate the impact of research about and with user involvement. Taken together and communicated in the international scientific community as well as in a wide range of public arenas, the empirical results, capacity-building, and modeling efforts of UserAge will have an impact not only on the present situation but also on the future.

Introducing an Equal Rights Framework for Older Persons in Residential Care.

This article reconceptualizes residential care for older persons by introducing a framework developed from a rights-based principle of disability policies: the normalization principle. This principle is part of the social model and states that society should make available for people who have impairments living conditions that are as close as possible to those of "others." Using the framework on the case of eldercare in Sweden shows that although disability policies have used people without impairments as a comparative (external) reference group for claiming rights, eldercare policies use internal reference groups, basing comparisons on other care users. The article highlights the need for external comparisons in eldercare and suggests that the third age, which so far has been a normative reference group for older people, could be a comparative reference group when older persons in need of care claim rights to equal conditions.

Baby boomers as future care users--An analysis of expectations in print media.

The aim of the study was to investigate media presentations of baby boomers as future care users. The Swedish baby boomer generation, born in the 1940s, and known as the '40s generation, has been characterized as youthful and powerful, and a question investigated in the study was whether boomers are supposed to display these characteristics as care users. We analyzed 481 articles in Swedish newspapers, published between 1995 and 2012, with a qualitative content analysis. The results showed that the '40s generation was predicted to become a new breed of demanding, self-aware care users. These claims were supported by descriptions of the formative events and typical characteristics of these individuals, which were then projected onto their future behavior as care users. Such projections tended to portray contemporary care users as passive, submissive, and partly responsible for problems associated with elder care. Consequently, approaches that focus on differences between cohorts need to incorporate a constructionist dimension to highlight the problem of generationism.

We will be different! Ageism and the temporal construction of old age.

Ageism has been described as different from other forms of discrimination and paradoxical in the sense that "nonold" people discriminate against their "future selves." The argument of this article is that nonold people may uphold ideas about older people as "the other" by constructing their own future selves as "essentially different" from that of older people of the present. Using examples from care work, this article shows how nonold care providers use temporal categorizations to justify treatment that they would/will not accept for themselves. Based on a review of literature, it is argued that a temporal construction of old age and older people as existing in the past, the present, and the future has been a prominent feature of the construction of old age and older people for many decades. A cohort of "new old" has repeatedly been described as active and self-conscious, in comparison to the passive, frail, and grateful older people of the past. Although these contrasts have been used to improve images of older people, they have also served to obstruct attempts to form identities as "older people" and made it possible for nonold people to justify ageist arrangements.

Is it racism? Skepticism and resistance towards ethnic minority care workers among older care recipients.

The study investigates the occurrence and character of skepticism and resistance towards ethnic minority care workers among older care recipients in a municipality in Sweden. Twelve representatives of caregiver organizations were interviewed about their experience of this phenomenon. Three additional interviews were conducted with ethnic minority care workers. Representatives described the problem as rare and mostly occurring as language difficulties or as a temporary problem characterized as a fear of the unknown among some care recipients. They tended to apply a pragmatic or pathologizing approach when talking about causes of and solutions to the problem. These approaches enabled care providers to comply with "potential racism" without challenging an official ideology of anti-racism. In contrast, staff of foreign descent described the problem as more frequent and severe, particularly for short-term employees who experience many first-time encounters with care recipients.