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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
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.
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.
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.
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.
PRR1-10.2196/42160
Care has been studied as a relational practice, but above all as a practice for those who
Waking up early to prepare the home for visiting care staff
Learning the home care organizations’ technical vocabulary
Working out which care staff will take out the rubbish as they leave, even if this service is not officially included
Showing an interest in the personal lives of the care staff and finding common interests
Deciding whether to go grocery shopping in person or to adapt to buying food online
Deciding to buy in tax-deductible cleaning and laundry services privately to supplement council-provided home care. (Tax deduction on household services or RUT (rengöring, underhåll, och tvätt [cleaning, maintenance, and washing] were introduced in Sweden in 2007, and RUT service companies increasingly use the term “eldercare” to promote their services.)
Research on home care and other forms of eldercare has been dominated by a provider-oriented perspective, which revolves around the organization, conditions, views, and activities of those who provide the care. This perspective has been developed in theories that define care as a moral, relational practice by which the caregiver interprets the needs of the dependent person [
This project will address the need for a user-oriented perspective as part of a larger mission to develop a theory of care use. 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. The perspective will also offer an alternative to ongoing attempts to make sense of the meaning of eldercare in a new landscape, where new cohorts of older people become care users, and where marketization has been presented as both a solution and a threat to the welfare state’s ambitions [
The project will use qualitative interviews, participant observations, and a diary study to investigate understanding, strategies, and adjustments of older people who use home care, thereby providing a type of knowledge that has so far not been devoted sufficient attention.
The aim of the project is to develop empirical and theoretical knowledge of home care as a relational practice, as interpreted, accomplished, and negotiated by older people in their daily lives, as part of the formal and informal services available to them:
RQ1: How do older people navigate, coordinate, and fit care arrangements and other forms of help into their home contexts, daily activities, long-term plans, and social relations?
RQ2: What practical, emotional, and rhetorical strategies do older people apply in their interaction with care staff?
RQ3: What types of identities, categorizations, and roles are played out when older people receive home care, and what is the bearing on power relations?
RQ4: How are users’ needs formulated as part of their experience of the eldercare system and their relations with home care staff over time?
The studies of the project are situated within several fields of research and investigations, internationally and in the Nordic countries.
A comprehensive body of research theorizes and investigates eldercare, with a strong tradition and prominent research environments in Sweden, Denmark, Finland, and Norway [
A second type of research that informs the project consists of studies that gauge care users’ opinions when defining quality of care. The National Board of Health and Welfare’s large annual user survey “Vad tycker äldre om äldreomsorgen?” (What do older people think about eldercare?) is the most prominent study from a Swedish horizon [
A third type of research that will feed into the project consists of studies of user participation, originally developed to empower older people who use health care or social care. This research tradition is anchored in Arnstein’s [
For the project, the state-of-the-art research builds on what Lloyd [
Drawing on theories in disability studies, the knowledge gained from the project will be used to develop a theory of care. The fact that the nexus of disability and ageing is attracting greater interest, and that concepts such as social rights, discrimination, and exclusion are now being used in policies on ageing, will facilitate the use of a disability lens in the study of home care [
The project will take a longitudinal approach. Increased needs frequently entail help from ever-larger numbers of providers, and pilot interviews reveal the efforts made to navigate what is on offer from different providers. Previous studies show that care users adapt their habits to (restrictive) arrangements that they consider to be the conditions of care, but that they also learn what demands and questions to put to care providers, and they try to develop relations that work against and between what is formally granted by the organization [
To address its stated aim and questions, the project will map, investigate, and follow up on care use from the perspective of care users. The mapping will be done with structured interviews with users and in some instances with information from their cohabiting partners and is inspired by existing network studies [
Care always occurs within a broader social context of established policies, here in the context of the Nordic welfare state. Policy is realized in everyday practices, and thus a microsociological understanding is crucial when theorizing care use. The project will be theoretically anchored in symbolic interactionism and will use an ethnographic study design to reveal meaning-making, interaction, and the negotiation of identities. The point of symbolic interactionism is that people act toward things based on the meaning those things have for them, and meaning is created in an interpretive process derived from social interaction [
The theories that the project is designed to develop will increase the understanding of home care use as a
Studies that use a symbolic interactionist approach typically have 2 overarching stages: exploration and investigation [
The exploration stage has been initiated and conducted through pilot interviews and various contacts with partners for collaboration in the field. The pilot interviews (financed by Helsingborg Council for December 2020 to October 2021) indicate that care users engage in a continuous form of “work”—emotional, practical, and rhetorical activities. Care users use these activities to prepare staff and guide the provision of care, to defend the privacy of their relations and homes, and to avoid depersonalization. Some users carefully prepare their homes and themselves to ensure that care activities run smoothly. They may display an emotional interest in staff members’ personal lives to make themselves visible as individuals. Some users describe rhetorical strategies to adopt the correct organizational and technical vocabulary to get the help they want, to avoid the response “We don’t do that,” and to develop relations with staff that affect the character of care.
From the exploration stage’s pilot interviews and literature review, we have so far identified four themes to be used as sensitizing concepts.
Enablement (goals in everyday life, achieved with home care and the navigation and coordination of services)
Relations and loyalties (in and beyond the home care tasks)
Power and control (over services, space, time, and categorizations)
Identity (as affected by receiving care and used to interpret the meaning of care)
The investigation will fall into 3 phases, including empirical studies, collaboration with users and other actors outside academia, and dissemination. The studies of the project are described below, whereas the other activities are described elsewhere in this application.
Contacts with members and stakeholders of the field studied are an essential part of the exploration stage, and in the project, such contacts take the form of user involvement and collaboration with actors outside academia. The project uses a model for collaboration and user involvement that focuses on purpose, actor, magnitude, and process [
Two stakeholder panels have been set up, and additional collaboration has been established with a panel of stakeholder organizations.
Throughout the project, a user panel of 5 older people with several years of experience of home care will provide feedback on the research process, analysis, and dissemination of results. The panel members have already been involved in the exploration stage, developing research questions and provided valuable feedback on how to strengthen the project’s user orientation. Members of the user panel will be part of the project for the entire period (except the dissemination phase) and will be able to influence findings by their validation at regular meetings. The panel consists of persons from the pilot interviews, the current ethnographic study, and professional and personal contacts. Participants have been informed that participation in the panel is voluntary and based on interest to discuss the type of questions that the project investigates. The plan is to have 2 annual meetings. A first meeting was held in May 2022 and a second in November 2022. A lesson so far concerns the frailty of the panel, with a need to recruit new members in case of severe illness or death.
Throughout the project, a panel of 6 older persons who are interested in the topic of the project will provide feedback on the research process, analysis, and dissemination of results. They will be recruited among senior citizen organizations as well as professional contacts in order to get a balanced distribution of senior citizens. Participants have been informed that participation in the panel is voluntary and based on interest to discuss the type of questions that the project investigates. The plan is to have 2 annual meetings, and the meetings were held in April 2022 and October 2022.
Contact has been established with 3 collaboration partners to act as members of a reference group during the projects. These partners are representatives of Helsingborg Council’s eldercare provision; regional and local representatives of the 2 pensioners’ organizations, PRO (Pensionärernas riksorganisation, the Swedish national pensioners’ organization) and SPF (SPF-Seniorerna, the Swedish association for senior citizens); and representatives of Seniorval (lit. Seniors’ choice), a national private provider of information and guidance for older people who apply for home care. During the investigation and dissemination stage, the external partners will be invited for discussions on how to translate our findings into information and programs that are useful for older people who use home care.
The purpose of involving representatives of a local authority and a provider of information—Seniorval—is to achieve direct impact by developing routines and information based on the findings of the project. These actors will be consulted at regular meetings.
The first core study will map out the different kinds of care arrangements in older people’s everyday lives. Research on informal care has shown that relatives provide a type of managerial care that includes the planning and coordination of help efforts [
Study 1 will be based on semistructured, qualitative interviews with 25 care users and 10 cohabiting partners, in which the research questions will serve as nodal points for the questions in the interview guide. The first part of each interview will be devoted to a structured mapping of help from the perspective of the care user (including cohabiting partners’ perspectives on the help provided in their shared home).
The second core study will be the most extensive, to be based on interviews and participant observations on several occasions. Researchers will be present in the users’ homes on 2 separate occasions when care staff visit. During these “stay-along observations” (inspired by go-alongs [
Study 2 will be based on the interviews conducted in study 1 and on 2 participant observations in the homes of the 25 care users within a month of the first interviews. Instead of accompanying home care staff as they visit various users, we will be present in the users’ homes on 2 separate occasions when home care staff visit.
The third stage of the project will follow up on care use using the project’s chosen longitudinal approach [
The follow-up study is based on interviews with all available care users, conducted 16-22 months after study 1. The objective is to gauge how perceptions, relations, and strategies change over time, especially in relation to any alteration in the users’ needs and degree of dependence. A total of 10 participants will be chosen for a final round of participant observations.
Diary data will be collected from approximately 10 care users. Each participant will be asked to complete and return a weekly diary for 20 weeks.
Approximately 25 care users from three Swedish local authorities will be included in the project. Additional interviews will be conducted with 10 cohabiting partners. Out of the 35 total respondents, data will thus consist of 60 (25 + 25 + 10) interviews plus 60 (25 + 25 + 10) stay-along observations and diary notes from 10 home care users. The following selection criteria will be used to identify participants: the care user should be 65 years or older and have home care at least twice a week. The project will strive to achieve diversity in the level of care, gender, socioeconomic aspects, and length in experience of living with home care. As part of the effort to map services from a user perspective, 10 participants will be chosen who have home care and combine it with private help through the RUT.
Approximately 10 older people will participate by writing diary notes about their experiences of home care and other forms of care over 20 weeks. The following selection criteria will be used: the care user should be 65 years or older, have home care at least twice a week, and be interested in formulating their experiences in writing. Participants will be recruited through the website Seniorval, where the researchers will advertise for home care users with an interest in documenting their experiences and reflections in diary format.
Home care users with cognitive disorders (dementia) will not be included in the project studies, but the project will develop theory that may be used in future studies of persons with such disorders.
The types of data that are generated are recorded and transcribed interviews, field notes from observations, and diary entries.
The project will produce a range of findings and is designed to develop a theory of care use. Data will be coded using the NVivo software package, and the steps of qualitative content analysis [
The project plan has been approved by the Swedish authority of ethics approval (2022-00829-02).
The project will focus on how older people interpret and negotiate home care in their daily lives. Thus, it will likely generate sensitive personal data on health. This will be the case, for instance, if interviewees comment and elaborate on illness, disability, dependency, and well-being. The principal investigator and co–principal investigator are familiar with the content and procedures for such applications and the proper procedures that follow ethical approval. Research participants will be provided with written and verbal information about the project’s studies, they will be informed that participation is voluntary, and they will be asked to sign a consent form. Data will be anonymized, and publications will not contain information that makes it possible to identify individuals.
The members of the research team have extensive experience in interviewing older people and observations in sensitive contexts. Our experience is that project information and informed consent should be treated as continual practices throughout the research process. Given the project’s longitudinal approach, researchers will ask for informed consent at each of the 4 visits. Prior to each “stay-along observation,” the researcher will ask research subjects about potentially sensitive situations and how these should be handled. Researchers will not observe situations that are ethically problematic, such as toilet visits and dressing or undressing.
The knowledge gained will benefit older people in a broad sense by shedding light on the everyday realities of those who receive home care. Hitherto, the absence of a true user perspective is striking. The project is not expected to cause any harm or inconvenience to the research subjects but will hopefully lead to improvements in the long run for older people with home care.
Members of panel 2 participated in a meeting with representatives of the project in April 2022, with the aim to introduce the project. A meeting with panel 1 was held in May 2022, where members of the group provided feedback on an interview guide, through meta-discussions and direct responses to some of the questions. A second meeting with the 2 panels was held in October and November 2022, with the aim to present preliminary findings in order to discuss their validity and relevance.
Between May and October 2022, the first round of interviews (n=25) was finalized. Interviews with partners will be finalized in January 2023, and the first round of observation is expected to be finalized by March 2023. Data collection with follow-up interviews and observations, analysis, and reporting of findings will be completed by December 2024.
The expected main findings of this ethnographic study on home care from the user perspective are that older people use their agency to navigate and fit home care into their daily lives, and that home care enables aging in place but has a number of restricting features that concern the control of time and place.
A user-oriented perspective on eldercare will have an important role in the new landscape of eldercare. This landscape has a theoretical and administrative ambiguity about the content and meaning of eldercare. A revision of the Social Services Act [
The project has a qualitative multimethod approach using semistructured interviews, observations, and diary notes. A strength in method diversification is a prediction of each capturing different aspects of the subjective experience. An interview is more likely to prime a respondent to evoke stories of critical or otherwise noteworthy events, mostly because of role expectation. The collection of diary notes aims to capture more mundane observations from an older person that may not have made it into an interview answer. The added strength of a period of diary note taking is that the older person will likely be more observant for a period of time. The observations complement the other methods, in that the researchers observe what is happening and prompt a series of short field-based interviews [
The main limitation of the project concerns recruitment and inclusion criteria. For the selection of the first 35 older persons for interviewing, the municipal home care managers are needed in order to gain access according to plan. By having municipal managers and home care staff as gatekeepers, there is a risk that older persons who are most likely to have a positive attitude toward home care will be asked to participate. This risk is particularly present when organizations represent fear that the project aims to evaluate the organization and its co-workers rather than exploring the experience of everyday life with home care. Representatives will therefore be informed about the aims of the project and that data will be anonymized when presented in publications. Alternative forms of recruitment based on advertising and snowball sampling will be used as complement, but it should be acknowledged that these methods are likely to result in an overrepresentation of persons being particularly critical. Finally, persons living with dementia and mental illness are excluded from the project for ethical reasons, unless they appear in interviews with cohabiting partners. This excludes an important part of the population who uses home care. These problems of representations will be continuously discussed among members of the research team and presented as limitations in publications of the project.
In this ethnographic 2-year study on home care from a user perspective, we will interview older persons on 2 occasions, conduct participant observations and ask care users to write home care diaries.
By studying care use in the context of older people’s lives the project will add important knowledge on the strategies and adjustments older people use 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. The project is expected to contribute empirical and theoretical knowledge on care and is anticipated to have a societal impact on 3 different levels.
First, the quotes and discussions that will be cocreated by respondents and researchers can serve as important consultative data for policy makers. The unique value from a policy design perspective is that the research goes beyond a user-satisfaction focus and gives an older person perspective on how the current welfare delivery is received, interpreted, and negotiated.
The second dimension of contribution is that this research can be read by providers of home care. It may act as consultative data in terms of how the scheduling, staffing patterns, and “the doing” are perceived and how the elderly use their agency to make it fit their life plans. More importantly, it can be used by care staff and other providers of care in order to develop a deeper understanding of everyday practices from the perspective of those receiving help.
The third dimension of the societal impact is an emancipatory one, given that older people who use home care can take part in other persons’ stories in order to make sense of their own experiences as well as finding legitimacy, comfort, and courage in knowing that others share aspects of their subjective experiences. A long-term secondary outcome may be a contribution toward mobilization and gaining leverage in maneuvering a quasi-market of welfare provision.
Peer review report by Forskningsrådet för hälsa, arbetsliv och välfärd / Swedish Research Council for Health, Working Life and Welfare (FORTE).
Rengöring, underhåll och tvätt (cleaning, maintenance, and washing)
The project is based on a pilot study funded by the city of Helsingborg. The project is funded by Swedish Research Council for Health, Working Life and Welfare (FORTE 2021-00506).
All data are qualitative and no data sets have been used. According to the project plan’s ethics approval, the transcribed interviews are available to the responsible research team.
None declared.