Proud but Powerless: A Qualitative Study of Homecare Workers´ Work Experiences and Their Suggestions for How Care for Homebound Older Adults Can Be Improved

ABSTRACT

Many older adults with complex care needs live at home due to ageing‐in‐place policies. This study explored homecare workers’ experiences and suggestions for improvements of care. Twelve semi-structured interviews were analyzed thematically, and revealed pride, capability, and satisfaction in their work, yet they feel undervalued and lack support. They advocate for integrated care models, recognition of their competence, flexible work approaches, and committed leadership. This would enhance patient care and address their own working conditions, addressing concerns from being relegated to the bottom of the hierarchy. They emphasize the need for comprehensive approaches, spanning from housekeeping to end-of-life palliative care.

KEYWORDS:

• Ageing-in-place
• caregiving for older adults
• homecare services
• home-dwelling older adults
• qualitative research
• working conditions

Introduction

The increase in the number of older adults worldwide leads to major challenges for health and social care systems (World Health Organization, 2020). Ageing‐in‐place” i.e., the ability of older adults to, as long as possible, live in their own homes safely, independently and comfortably, is a preferred policy of eldercare in most countries, including Sweden (Davies et al., 2022; Strandell, 2020). Consequently, a growing number of people live at home with complex care needs due to multiple long-term conditions (Kuluski et al., 2017; L. Sandberg et al., 2021). This leads to an increasing need for support including personal care, help with household chores as well as healthcare of multiple diseases.

According to WHO long-term care services like home healthcare and homecare for older adults should be integrated and based on the core principles of person-centered-care (PCC) (World Health Organization, 2020). PCC means to create organizational and individual conditions for the development of a partnership between the older adult, relatives, and staff at every meeting where the person´s perspectives are considered as important as the medical perspectives (Britten et al., 2020; Hammar et al., 2021).

In Sweden approximately 10% of the population aged 65 and over receive homecare services, but the share varies much with age (Brändström et al., 2022). It is the municipalities that are responsible for the provision of homecare to older adults living at home. The service is primarily tax funded and organized locally by the 290 municipalities which have a high level of autonomy to provide homecare services in accordance with the Social Service Act (National Board of Health and Welfare, 2001). Services can be provided by the municipalities themselves or contracted by private companies. Type and extent of service are based on individual need assessment by a social case manager at the local municipal authority. Homecare services include both personal care (e.g., help with showering, getting dressed, intake of medicines, eating) and household matters (e.g., cleaning, grocery shopping) and is offered around the clock. Care is heavily subsidized and provided against small fees that are deemed universally affordable or even free for those with the lowest income. Although the uptake of privately paid eldercare is increasing, publicly funded care in accordance with the Social Service Act still represents the vast majority of eldercare in Sweden, and only a few older individuals (Meyer et al., 2022).

In Sweden a comprehensive organizational change was implemented in 1992 (ÄDEL reform). The aim of this reform was to transfer all responsibility for long-term care for older adults from the county council to the municipality (Trydegård, 2003). The care system has since then undergone structural changes with “ageing-in-place” being a substantial part, meaning that older people should remain in their own homes with assistance as long as possible (Schön & Heap, 2018; Strandell, 2020; Szebehely & Trydegård, 2012). Only when a person’s needs can no longer be met in their own home are they transferred to nursing home.

Homecare workers are the primary caregivers for the heterogenous group of older homebound adults with functional decline and meet them on a regular, sometimes daily basis (Hewko et al., 2015). The homecare workers are nurse assistants or non-licensed staff without formal education and their profession is largely unregulated (Hewko et al., 2015; Szebehely & Trydegård, 2012). Almost 67% of the homecare workers in Sweden are nurse assistants (up to 3 years of vocational training) and 33% are care assistants (with short or no professional training). Thus, they often lack healthcare education and may receive no more than a brief introduction to work and they report inadequate support from both their supervisors and colleagues (Kubiak & Sandberg, 2011; Strandell, 2020). About 75% of the homecare workers have permanent employment and 25% are employed by the hour or have other temporary employment (Strandell, 2020). It is a female-dominated sector and approximately 90% of staff are women, 35% of the nurse assistant are foreign-born and among the care assistants 49% are foreign-born (Statistics Sweden, 2023).

The work is characterized by low status and low salaries as well as poor working conditions (Strandell, 2020; Strandell & Stranz, 2021). The number of clients visits has increased during the years and estimates show that homecare workers provide on average 15 visits during a workday, of which half are 15 min or shorter (Strandell, 2020). The increased demand for homecare has not been balanced with the number of skilled workers and levels of long-term sick leave and vacant positions are high. The quality of homecare is sometimes described by the homecare workers as low as they regularly suffer from time pressure and stress. However, staff availability, competence and continuity have been a challenge since the early days of care for older adults in Sweden (Szebehely & Trydegård, 2012). Homecare workers are exposed to a variety of challenging situations and bear a heavy responsibility for older adults´ social, physical and psychological well-being (Hewko et al., 2015). Furthermore, often they work alone, with limited support by colleagues and healthcare staff, and become used to handle demanding situations by themselves.

The voices of homecare workers are rarely heard in society at large, and they are relatively invisible in research (Hewko et al., 2015; Timonen & Lolich, 2019). This study aims to understand more about how homecare workers experience their work and their views on how homecare services for older adults can be improved.

Method

Study design

This qualitative study is based on the lived experiences of homecare workers at work. This approach requires researchers to maintain an open attitude to the narratives from the participants that are not controlled or compared to known facts in the area. It would be inappropriate to form a theoretical reasoning before the study begins (Dahlberg et al., 2008). Data was collected through semi-structured individual interviews (Kvale & Brinkmann, 2009) and analyzed using inductive thematic analysis (Braun & Clarke, 2006).

Sampling and recruitment

The number of participants required in qualitative research to cover a phenomenon can vary depending on the nature of the study, the depth of information required, and the research question being investigated (Sim et al., 2018). Considering that our research question addresses the experiences of a well-defined population during a short time interval and based on previous experience of qualitative interviewing, we aimed to recruit a maximum of 20 participants (J. Sandberg, 2000). However, the sample size was stepwise revisited along the research process and was not decided in advance (Sim et al., 2018). After having interviewed 12 participants we could not find any new information according to the aim of the study which is why data collection was stopped.

In order to get a contextual variety of homecare workers, we searched for participants in different geographical areas, both urban and rural, and in different socio-economic areas. We also tried to include both men and women of different ages with different levels of experience and education. The inclusion criteria were 1) at least six months experience of homecare work, and 2) interest to share experiences in an interview. Participants were recruited in two ways. The first two participants were recruited by snowball sampling from established contacts from the research group. As the two participants were not able to arrange further contacts with homecare workers in other municipalities, we changed the sampling strategy and instead, we contacted managers in municipality-led and private homecare. In total, managers located in eight municipalities were contacted of which six agreed to participate. These managers were briefed about the study by telephone and e-mail and then the managers recruited homecare workers for participation in interviews. Several days prior to the interview, homecare workers who agreed to participate were given information about the aim of the study and how the results should be used. A total of 12 homecare workers were recruited and interviewed during a period of five months (see Table 1 for background characteristics of participants).

Table 1. Background characteristics of participants (n = 12).

Variables	n
Gender
Male	1
Female	11
Age (years)
Mean	44
Range	25–64
Born
Sweden	9
Abroad	3
Nurse assistants^1	6
Care assistant^2	6
Work experience homecare services
Mean (years)	8
Range (years)	1–20
Care provider
Municipality	5
Private company	7

¹Requires specialized education of 1–1/2 years at upper secondary school level.

²No formal education.

Data collection

Semi-structured interviews (Kvale & Brinkmann, 2009) were conducted between July and November 2022. The participants were interviewed over telephone, except for the two first interviews that were performed face-by-face as the interview guide needed to be pre-tested. One of the first two interviews was included in the study, whereas the second one was excluded as it was not audio-recorded.

An interview guide with predefined topics was generated to initiate and structure the interviews. To cover different aspects of homecare workers´ experiences, the interviews started with broad open-ended questions (see Box 1). To be able to capture new topics relevant to the research aim probing questions differed to give the participant the opportunity to elaborate and dwell on aspects they considered as most relevant (Kvale & Brinkmann, 2009). All 12 interviews were audio-recorded with the informants’ permission and transcribed verbatim. The interviews had an average length of 54 minutes (range 46 to 78).

Box 1. Interview guide

1. What do you think about working in homecare services in general?

2. Can you give some examples of what works well in your work?

3. Can you give some examples what is difficult and challenging in your work?

4. What kind of support do you get in work?

5. How does collaboration with healthcare providers look like?

Data analysis

The individual interviews were analyzed using inductive thematic analysis, a method for identifying, analyzing, and reporting patterns of meaning (themes) within a data corpus (Braun & Clarke, 2006). We took a constructivist approach to our analysis, with an understanding of knowledge as constructed through individual lived experiences, and awareness that our lived experiences as researchers influence the knowledge we generate in interaction with our research subjects and data (Lincoln & Guba, 2011).

The analysis was completed manually. The analyze process started with the first and second author listening to the audio-recorded interviews, reading and re-reading all transcripts thoroughly to develop familiarity and taking notes about aspects of the data that seemed particularly important or interesting. Following this the second author organized data by coding, a process of dividing the text into meaningful units and giving each unit a name or a code. The coding process continued until all data was exhausted. In the beginning of the analysis codes could be placed into different subthemes. Text that could not be instantly linked to the aim of the study was placed in a special file called “out of aim.” At the end of the analysis this file was re-read to see that no data was overlooked. The first and second author then collated codes with similar content and grouped them into potential subthemes. Subthemes considered to have a common origin were merged. After reading all extracts for potential subthemes and considering whether the data cohered together meaningfully, each code was assigned to a specific subtheme. Finally, all authors met to discuss and revise the candidate themes. After discussion, researchers agreed on six subthemes which were organized into two major themes by relevance, similarities and relationships that captured the meaning of the individual interviews. All authors were involved in the process of refining, framing, and naming the themes according to the related subthemes (Table 2). The report was produced, using quotes selected to illustrate each subtheme.

Table 2. Themes and subthemes generated from the analysis of homecare workers work experiences and suggestions for improvements.

Themes	Subthemes
(1) Proud with competence	1.1 I use knowledge and life experience to strengthen clients´ abilities
	1.2 I am good at discovering changes in clients´ condition
	1.3 I use my competence to work flexible in an inflexible organization
(2) Powerless at the bottom of the hierarchy	2.1 I’m forced to make decisions without medical support
	2.2 We need committed leaders who knows our work
	2.3 We are undervalued by society

Rigor of the study

We used the concepts of credibility, dependability, confirmability and transferability to maintain rigor in the research process (Guba & Lincoln, 1989). To ensure credibility, the research team systematically followed the guidelines of Braun and Clarke (Braun & Clarke, 2006). The initial process of coding was performed by the second author and then the thematization of codes were discussed and validated by all authors. To increase dependability, the same interviewer interviewed all participants and encouraged them to speak freely. All steps of the research process were documented to ensure transparency. To improve confirmability, we checked that codes and subthemes were grounded in data and that no data was overlooked using reciprocal reading between themes, subthemes, and the entire data set. When research members disagreed, we returned to the transcripts and discussed until an agreement was reached. Our research group comprises individuals with different backgrounds and perspectives (behavioral scientist/nurse assistant, epidemiologist, general practitioner, clinical pharmacologist, and registered nurse). All authors went through, and interpreted data and we complemented and questioned each other during the phase of thematization of codes. In addition, to ensure confirmability, quotes are used to illustrate that analysis and findings are grounded in the data. All quotes were translated from Swedish to English by a native English speaker. Finally, we attempted to describe the context and sample in a way that allows the reader to judge the transferability of the findings. All authors iteratively reviewed the text before final approval. During the entire process of the analysis, analytical sessions among the five authors were regularly conducted to enhance the trustworthiness of the findings.

Ethical considerations

We followed the ethical principles for medical research involving human subjects as stated in the Declaration of Helsinki and adopted by the World Medical Association (World Medical Association Declaration of Helsinki, 2013). Prior to the interviews, the participants were given written and oral information about the study aim and how the results should be used, and they had the opportunity to ask questions. Each participant signed an informed consent granting the right to withdraw from the study without any reason. Codes were used to designate the participants to guarantee their confidentiality. The project was approved by Ethical Review Authority in 2022.

Results

The analysis distinguished two themes, each with three underlying subthemes. The themes capture the homecare workers work experience as well as their suggestions on how homecare services can be improved (Table 2).

Proud with competence

I use knowledge and life experience to strengthen clients´ abilities

The homecare workers are proud of the care they provide, that they make a difference in someone’s life and provide essential support which in turn enables their clients to remain at home. They appreciate to work with older adults. All participants had actively chosen to work in homecare; they express that they learn a lot and feel satisfied which drive them to remain in the profession. In addition to their professional experience, they describe how they use their personal life experience to make their clients´ feel better.

Every day is different, and it is an honor to make the days of the old a little better. I work a lot with person-centered care. So everything is from person to person […] I am happy and share my joy every day and think that if I can just make them feel a bit better, I will be really happy when I go home. (Interviewee 8)

Homecare workers meet older adults with a wide range of conditions, living under different circumstances and with a variety of capabilities and needs. Some clients have mild disability and need help with cleaning and grocery shopping once a week, while others need complex assistance, emotional support, and end-of-life care. Consequently, they must be able to manage different tasks of varying degrees of difficulty.

We can’t do the same thing for every user, we have to change roles every time we enter someone’s home. And we have to read the situation. As soon as we open their door, we have to be ready for anything. Homecare is not just about going in and cleaning. It’s about so much more – loneliness, a lot of mental health issues. Sometimes you don’t have to do anything, just be there, that helps a lot. (Interviewee 12)

Homecare workers have to take responsibility for different situations with personal maturity to be able to see and understand how the older adult is feeling on that particular day. They describe for example how older people are afraid of falling which may induce an unnecessary inactivity. In those situations, it is important that homecare workers motivate the client to dare more. Otherwise, physical inactivity may cause complications and further dependence. Participants describe how they try to pay attention to and promote their clients´ health as well as to encourage them to retain and develop certain physical functions. They are aware of their clients´ strengths, abilities, and resources.

She’s been in a wheelchair for five years and felt bad about it. Then I said: Don’t you want to try standing or walking? She said: ´Yes, but as soon as I got into a wheelchair, they said that once you’re in a wheelchair, you’re stuck there´. I said, maybe we should ask if someone can bring a walker so you can try it? Then she learned to walk with it. She is over 90 years old, but she said: ´I have never felt so good´. Because she only had those words in her head. So you have to make them dare a bit […] and the person who meets them the most sees how much they can do. (Interviewee 8)

I am good at discovering changes in clients´ condition

Participants emphasize how important it is to be capable to do basic assessments of the clients’ social and medical well-being. The longer a professional care relationship with a client lasts, the easier it is to determine the client’s condition for the day and to understand how the client wants assistance to be provided. Participants describe how they read and interpret small signs such as body language or subtle reactions of older adults. This includes, for example, how intimate care should be carried out, or deviations in the client’s health situation or social situation. Homecare workers must be sensitive and observant to read the signs of the client’s condition.

For those of us working in homecare, a big part of our work is being able to see if this is the case: ´Has something happened to this person? ´ That’s where we are best. We should know what is the normal state of the person we meet and compare how the person feels today with how it usually is. (Interviewee 7)

Participants who have been working for many years in homecare feel that symptom burden and care needs have increased over the years. Compared to the past, more frail and seriously ill older people are living at home. This requires knowledge of how to use certain technical aids and basic medical knowledge. Participants expressed that colleagues without training or experience often lack the competence to make basic assessments of both the client’s social situation and their medical needs. In the end, this may lead to severe shortcomings in care, unnecessary suffering, and an increased risk for emergency medical care.

I had received a report that the client had been bedridden for quite some time, but that she can press the alarm button if she needs help. When I get there, she is really not well. I couldn’t even feed her because she couldn’t swallow, and she was skinny as a rail. Then I called an ambulance, and she went in and lived for three days, then she died. Based on my experience, I think palliative care would have been needed. When I spoke to the nurse, she hadn’t even been informed that it was that bad. The staff who had gone there did not understand how serious it was. (Interviewee 10)

I use my competence to work flexible in an inflexible organization

Homecare workers have to be flexible to meet the changing needs of clients with different health conditions. Because changes in needs are often unpredictable, participants describe the difficulty of working according to predetermined schedules with pre allocated timeslot for each client. Participants describe how they managed to reprioritize their schedules to create better care for someone who had a particularly challenging situation. Deciding who should get less time when someone else needs more time requires experienced staff who have good working and client knowledge. Homecare workers ability to be flexible when planning their day is of utmost importance for job performance. Participants emphasized the need for a more flexible schedule in order to be able to make their own decisions based on the needs of the client instead of having to adapt their work to a predetermined schedule.

I don’t just think of tasks, instead I think that we work on a person-to-person basis, in the condition, to the extent relevant today. If you’re new to the job, for example, then it’s easy to just stare blindly at the phone and the description [of your tasks], and just do, and forget that there’s actually a person sitting here. No, I think it’s important to see the person in question. (Interviewee 11)

An obstacle to carry out the work in a flexible way is also the short time frames assigned to the older adult. Participants often experiences that short, quick visits do not correspond to the individual clients’ needs as case managers do standardized assessments based on templates. Since the older adult´s need for help usually varies from day to day, it is difficult to assess and perform the work task based on a specific time frame. Furthermore, the tight and optimistic timetables do not allow for unexpected events. Homecare workers time with the client is recorded and controlled in various reporting systems (using mobile phones or palm pilots) where every minute is registered. This is useful to ensure that the client has received help, but participants believe that it can jeopardize social interaction and support of the clients since the staff are supposed to adhere mechanically to their tasks.

You’ve to think […] is the client really getting what he or she needs and not just us running in, throwing down the medication, putting on their support socks, and leaving. Instead, you should also be able to sit down and talk to them and ask them how they are doing and have a conversation. There are a lot of people who are very lonely. I think it feels terrible when the time is reduced. (Interviewee 3)

Powerless at the bottom of the hierarchy

I’m forced to make decisions without medical support

When participants detect changes in their client’s health, they usually seek advice from primary healthcare or home healthcare. However, they experience that is difficult to get in touch with them. Despite insufficient medical competence, they may be forced to solve problems on their own, in particular in non-urgent situations and when they fail to get hold of healthcare professionals. Participants describe how they try to solve the situation in the best way but still both the older adult and the homecare workers may feel insecure.

I have to decide what to do. But sometimes it doesn’t work, like with medicine. If it’s not there, I think: should you skip all of it [all the medications] in the morning and wait, or should I give the rest [of the medications]? I have no idea. Then I just have to take a chance on what I think. […] I also think – did I make a mistake there? Yes, it gets really difficult, actually, exactly because you can’t get hold of the primary healthcare center. (Interviewee 1)

The homecare workers describe a lack of communication with primary care which makes it difficult for them to communicate their observations. Moreover, primary healthcare staff rarely inform homecare workers about a client´s health condition making it difficult to provide the best possible help to older adults. Many participants express that “one does not know what the other one is doing.” There are no joint coordination meetings between the organizations regarding care planning for clients/patients. The collaboration works in some places where homecare providers work closely with the nurses in home healthcare meaning that they obtain advice quickly. A holistic view encompassing collaboration with all actors around the older adults is basically absent. Homecare workers may be informed that primary healthcare has performed a home visit or that a visit is planned, and that the homecare workers should open the door for healthcare staff, but participants is rarely invited to participate themselves.

This chain’s broken in all sorts of places. The links aren’t connected […] Yeah, but I see occupational therapists, physiotherapists, nurses, and nurse assistants, and all other personnel, we’re a link. We kind of have to work as a team. But it’s not done because people don’t see, don’t understand the importance of it. (Interviewee 6)

We need committed leaders who know our work

Many participants experience that managers are unable to lead their staff in the complex work. They want leaders who are familiar with working with older adults and who know what resources are needed. On the other hand, some participants experience robust leadership and describe how the manager organizes work in two teams: One team takes care of practical tasks (cleaning, shopping, delivering food) and the second team comprising staff with education in elderly care is responsible for the clients’ personal care. In this organization homecare workers have been given the right working conditions to provide high-quality care. Participants express that a robust driving leadership that understands the challenging work with older adults is a cornerstone. When the manager is involved and aware of what daily work look like, the participants feel secure.

Our new manager has made sure that there’s more order, and that she insists that there should be more personnel out there. Then we got a team that only cleans and delivers food, so the rest of us focus mostly on care. So that we can do the best job we can. She [the manager] is involved in what happens to the clients, so it’s not just some manager who sits in an office and deals with the finances, like it’s more or less been before. (Interviewee 7)

At workplaces where the participants recognize the leadership to be poor, they experience a “slavery for money.” The homecare workers feel that the managers show little understanding of that high quality social- and healthcare require trained and experienced staff with access to appropriate equipment. The participants feel that they need to fight for their own and the clients’ rights. The managers are often unable to guide and listen to the homecare workers and they do not understand the complexity in working. Moreover, participants who give out their private phone numbers to clients and relatives are considered as an extra resource and a “liberation” from the managers burdens.

So we have to work without gloves, we have to clean and change diapers and stuff like that without gloves. I do it for the sake of the older adults. But it’s not so fun for them either that I don’t have gloves. So it’s a lot that the […] managers ignore their own personnel a lot, I think. (Interviewee 1)

Some participants describe it is important to trust their colleagues to work properly and safe. However, when they discover that a colleague mismanages work and, for example, skips a home visit or does not give required help, they inform the manager – but nothing happens. The manager “puts the lid on” and does not talk about it anymore. Staff expressed that there are many reasons for the colleagues’ lack of professionalism, including lack of education in geriatric care, training/experience of work, support by the organization and deficient motivation.

And then they [the boss] say that ´Yes, we’ll take care of it´. But nothing happens. There are those who don’t show up, that is, colleagues don’t even visit as they should, and it usually happens in the evenings. […] And then once again, you hire someone from the street who doesn’t know the job. I usually say, we don’t work with Lego pieces. Instead, it’s people who are sick at home. It is really, for me, a serious thing. (Interviewee 5)

Furthermore, participants believe it is important to have an open dialogue and effective internal cooperation within the homecare organization. They encounter many complex situations in the clients´ home that need to be debriefed but few describe to be offered this opportunity. The homecare workers feel that to discuss and reflect about work makes it easier and they learn from each other. Questions they would like to discuss are for example how to increase person-centered care, how to communicate with clients and relatives but even how to maintain a professional relationship with clients. Currently, participants describe that there are no regular meetings or debriefing sessions about clients´ health status or other concerns that matter to the client. Instead, they are asked to read the written documentation about the client, which is often deficient.

Once at a workplace meeting, they asked me: What do you do when you go to a new client you’ve never met? And then I explained what I did. Otherwise, we talk very little with each other because we don’t see […] everyone goes their separate ways. (Interviewee 6)

We are undervalued by society

Participants feel that they do a good job and often receive positive feedback from clients and relatives. However, feedback and support from managers, the municipality or healthcare are rare. In contrast, complaints are conveyed promptly. Participants believe that the lack of confidence in their professionalism is explained by their position at the bottom of the organizational hierarchy. They are mistrusted as “they are just homecare workers.” Furthermore, they deem it likely to have a higher status in the organization if there was increased confidence and awareness for their work tasks.

We’re just homecare personnel. Yeah, sometimes you could feel that I’m just here doing my job but then it’s nothing more. But everything that’s important kind of goes over my head a little. You feel a little powerless sometimes when you try to make somebody’s everyday life better, but then nobody higher up listens. (Interviewee 2)

Participants expressed that they are the ones with best client knowledge as they meet them regularly. This continuity paves the way for a professional relationship with their clients. Homecare workers have rich information to share with both the municipality, primary healthcare and home healthcare. However, they seldom feel listened to or considered as a serious collaboration partner in the care of older adults. Their client observations and knowledge are often ignored. Participants wish that their client knowledge should be used to get a holistic view of the older adults’ social and health care Many participants have long experience in homecare services and know their clients well, but only a few have been invited to participate in meetings on the client´s long-term care planning. One reason why they may not participate is that they have low trust from other actors.

We had a client who lived in total misery. […] But you felt that – couldn’t we be allowed to attend a meeting and be able to tell the person’s case manager that, actually, this is how it is. Because we see everyday life, no one else does. Because after all, we have a different insight into their lives than, for example, the coordinator [of homecare services]. Sometimes a client can say, ´I’m just fine´, but actually it’s not like that. (Interviewee 2)

Participants express that working by yourself in someone’s home creates a more vulnerable situation than inpatient work where you usually are part of a team. Working alone means that both the client and the staff become more exposed and left out to each other. The client gets dependent on the staff’s knowledge, skills, understanding and ability to relate to the physiology/psychology of the client. Homecare workers often have to balance between the client´s wishes and integrity and what is considered high quality care. In work situations they are forced to rely on their own abilities.

You can press the alarm button and ten people come to help [in a hospital]. Here you go by yourself to a person who lives out in the forest, who’s not feeling so well. You have to be able to make an assessment. Here you’re alone, and we don’t see [what our colleagues do or what they do not do] but that’s what we hear from the customers. And that you see certain things that you have left them, and they haven’t eaten a bit, and things like that. (Interviewee 5)

Participants consider themselves having the lowest status in the organization but also in society at large. They are concerned that many people think that anyone could work in homecare services. Policies need to be changed, higher demands for training and education need to be implemented and higher salaries be paid to change the negative image of homecare workers in society and to maintain a staff. Some participants also believe that older adults are discriminated by society and that society should work actively against ageism. The ageism can stem from various factors such as stereotypes, negative attitudes toward aging, or assumptions about the abilities of older adults. Participants state that is essential to acknowledge and address these biases to ensure that older adults are treated fairly and with dignity.

What I’d like to change is the view of eldercare in general. That it’s valued higher than it is now. […] I’ve always heard this – yeah, work in eldercare, you can just grab someone off the street, as long as you have a driver’s license and a smile on your face, anyone can work here. And then I’ve felt a little that they’ve hired any Tom, Dick, or Harry that don’t work [out] at all. Yeah, the view gets negative, of course. (Interviewee 10)

Discussion

This study explored how homecare workers experience their work and what suggestions they have for improving homecare services for homebound older adults. The thematic analysis distinguished two themes, Proud with competence and Powerless at the bottom of the hierarchy. A main finding from the first theme is that the homecare workers feel their personal engagement, sensitivity, responsiveness, and flexibility contribute to good homecare service. A main finding from the second theme is the experiences of homecare workers that they can feel abandoned and unappreciated whilst having a great responsibility for their clients’ well-being. The two main themes thereby show an important conflict in the homecare workers experience, between their own efforts and abilities on the one hand and the demands and neglect from their surroundings on the other hand. This conflict can be understood in different ways and there are contextual factors that may manifest in the identified subthemes. For example, poor integration between primary healthcare and homecare could be one factor that instigates the conflict, insufficient time for what the work requires can be another.

The first theme, Proud with competence, has the subtheme I am good at discover changes in clients´ condition where participants give examples of the complexity of the work and how their experience and skills can make a difference to their clients. They describe how they detect changes in health conditions that can be addressed before they lead to major problems. The subtheme I’m forced to make decisions without medical support under the other main theme Powerless at the bottom of the hierarchy expresses how the participants experience that the collaboration between homecare services and primary healthcare is not working well.

When participants observe changes in older adults´ well-being, i.e., decreased appetite, dehydration, dizziness, tiredness, or getting depressed etc. they encounter difficulties to get in contact with primary healthcare to share these observations. And if they succeed, they often feel that their observations are ignored. This is problematic since early detection of changes in health status is a key feature of holistic care management in frail persons with multiple long-term conditions (Aggarwal et al., 2020). Homecare workers should be considered an important resource and partner for primary healthcare in early detection of decreased health status, increased frailty and need of support or care (Aggarwal et al., 2020). In times of an aging population and policies of “ageing-in-place” high-quality integrated health and social care models become even more important (Dambha-Miller et al., 2021; Mercer et al., 2021; World Health Organization, 2020). The collaboration with primary healthcare is vital in such models, as homecare workers often works alone in challenging care situations with older adults with multiple long-term conditions and polypharmacy (Kuluski et al., 2017; L. Sandberg et al., 2021). The evolving care system with an increased number of frail homebound older adults demands new models of service delivery with increased responsiveness and effectiveness (Aggarwal et al., 2020; World Health Organization, 2020). Integrated work between homecare services and primary healthcare could potentially release capacity in primary healthcare, increase efficiency and contribute to better physical and mental health outcomes for frail older adults (Kuluski et al., 2017). Our findings are in line with previous studies showing that homecare services in Sweden are not well integrated with primary healthcare, nor follow a PCC approach (Hammar et al., 2021; Schön & Heap, 2018). Of note, to date there is no clearly defined definition of “good integrated care” and how it should be organized (Mercer et al., 2021). Consequently, homecare workers and primary healthcare staff are in the driver’s seat to improve care of older adults. However, homecare workers´ contribution to such improvements have rarely been considered of value (Hewko et al., 2015). It is an urgent task to ensure that emerging models of care for older homebound adults take their perspectives into accounts.

In subtheme I use my competence to work flexible in an inflexible organization under main theme Proud with competence the participants express how they are supposed to work according to predefined timeslots meaning that older adults’ complex needs are squeezed into simplified minute schedules to fit a predetermined detailed planning. This highlights the conflict between clients’ needs on the one hand, and unreasonable demands on the other. The participants have to struggle to reprioritize their time schedules themselves to free up time for the person who needs their time the most that day. It is their experience and good knowledge of the clients that makes this prioritization possible. In this way, they succeed in maintaining a PCC for the individual even if the organization is not adapted for it. These results indicate that neither homecare workers nor older adults benefit from minute measures that erode both the working environment and quality of care. Our and others´ results recommend homecare services that are not strictly based on efficiency to fulfill specific tasks but on the different needs of the clients (McDonald et al., 2019; Strandell, 2022).

In subtheme I use knowledge and life experience to strengthen clients´ abilities under main theme Proud with competence the homecare workers describe a PCC way of working. How they motivate and assist older adults to remain independent by addressing a person’s social situation. Furthermore, participants experienced that many older adults they encounter feel lonely. Loneliness and social isolation among homebound older adults are confirmed by other studies across the world (Ezeokonkwo et al., 2021), and extensive research demonstrates that the physical and mental well-being, of older adults are significantly affected by social isolation (Wen et al., 2023). Participants in our study emphasized that social interaction is of major importance to build trustful relationships, minimize loneliness and make older adults feel safe and secure. However, they experienced the social interaction is jeopardized by the strict time schedule which conflicts with clients’ needs. There is seldom time to interact with clients on their wishes. This is troublesome since participants are motivated by a sense of commitment for the older adults they care for. The lack of social interaction with clients has previous been observed in the Swedish homecare context (Olsen et al., 2022; Strandell, 2022). To reduce the level of social isolation and loneliness among homebound older adults, the phenomenon “older people living with migrant domestic workers,” can be seen in some parts of the world (Ho et al., 2022). This strategy is infrequently observed in the Swedish context. Furthermore, in Scandinavia, including Sweden, the practice of intergenerational co-living has become increasingly uncommon although familial assistance in various domestic tasks is still extended among kin, albeit not on a daily basis. Thus, in the Swedish context, for homebound older adults lacking relatives, homecare workers may play a pivotal role in mitigating the loneliness experienced within this group.

In the subtheme We need committed leaders who know our work under main theme Powerless at the bottom of the hierarchy all participants emphasize the need for support by committed managers that are aware of the complex work in homecare services. Managers play a crucial role in maintaining quality homecare services. They are responsible for overseeing the day-to-day operations of homecare organizations and ensuring that their staff is properly trained and equipped to provide quality care to clients. Earlier research has identified various obstacles to effective management homecare services. These obstacles include non-educated staff, staff continuity, ability and time to discuss and reflect on challenging situations with colleagues, managers, and nurses (Kubiak & Sandberg, 2011). As shown formerly, homecare workers suffer from job strain if they are not able to fulfill their professional standards. This likely contributes to high staff turn-over and thus drain homecare staff (Strandell & Stranz, 2021). Homecare workers in our study conclude that improvements of their conditions would lead to better care for older adults and, as a side effect, raise their professional status at work as well in society. PCC has shown to increase job satisfaction, still many care organizations lack the structural requirements to provide PCC (Edvardsson et al., 2011). It is the care organizations´ task to set up the conditions making it possible for staff to provide PCC (Britten et al., 2020). However, participants´ experienced the opposite is true in Swedish homecare and that they are often left alone with their attempts to work PCC. Homecare services is seen as a low-status profession with low salary in Sweden. It is dominated by women, which may be a contributing factor to both the low salaries and the low status (Acker, 1990). The participants in this study expressed that in many cases they feel at the bottom of the hierarchy in society.

This study provides a rich picture of homecare workers’ perspectives on their working conditions and how the care for older adults can be improved. Yet, some limitations of our study should be acknowledged. Since our aim was to interview homecare workers with work experience our participants may not be representative of the general work force of homecare workers with regards to the high staff turnover in homecare services. However, we find it unlikely that homecare workers with shorter work experience would have much different views on the central aspects brought up by the participants. Furthermore, we started the recruitment process with a snowball sampling with the intention to obtain a broad sample allowing for variability in homecare workers´ experiences. This approach turned out to be ineffective because the participants lacked contacts with homecare workers outside their own municipality. Therefore, we involved homecare managers in the recruitment process, with the risk of participants feeling forced to participate or being afraid to talk about negative experiences. However, during the conduct of the interviews, we felt that the participants reflected and spoke freely even about negative experiences in the homecare organization.

Conclusion

Homecare workers express lack of support from and cooperation with primary healthcare. Their working conditions, and especially time constrains, do not enable them to follow WHO´s recommendations on integrated care and PCC. Furthermore, homecare workers perceive the management of their organizations as deficient and demand more flexibility to plan their work recognizing the unpredictable and relational nature of care. Overall, homecare workers play a critical role in care as they interact with clients on a daily basis and have valuable skills and competences that may contribute to a better health and quality of life for older adults. Accordingly, attempts to improve both care for older adults living in home but also working conditions in homecare must consider homecare workers´ perspectives and experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data are not available due to ethical constraints as the participants in this study did not agree for their data to be shared published.

Additional information

Funding

This work was supported by the Swedish Research Council under Grant number 2023–06094; The Health Research Fund, Region Stockholm under Grant number 20200202; Region Stockholm (post doc grant) under Grant number FoUI- 973021; Research support for network health care, Region Stockholm under Grant number FoUI-937161; Medical Research Funds from Foundations at Karolinska Institutet under Grant number 2020 − 01839; King Gustaf V and Queen Victoria’s Masonic Foundation for Aging Research.