“Standing alone”: understanding the self-management of family caregivers of persons post-stroke at the time of acute care

Abstract

Purpose

To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation.

Methods and Materials

We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis.

Results

The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data.

Conclusion

During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.

Implications for Rehabilitation

• Family caregivers’ development of self-management starts in acute care and needs more guidance from health professionals.

• All health professionals should take a proactive, partnership attitude towards family caregivers to better support them in developing self-management skills

• Different forms of self- management, such as co-management with family and friends, need to be considered when developing self-management programs for family caregivers.

• During acute care, family caregivers benefit from repeated information. Besides verbal information health professionals should consider different methods for providing information, including written, visual or audiotaped methods.

• Health professionals should raise awareness among family caregivers about the topics of role changes and the importance of a balance of activities. They should provide information about these topics to promote the caregivers’ health and well-being.

Keywords:

• family caregivers
• stroke
• self-management
• co-management acute care

Introduction

Worldwide, stroke is the third leading cause of disability for adults [1,2]. Every year, 13.7 million people worldwide suffer strokes [1]. A stroke is an acute condition, most often needing hospitalisation, which then develops into a chronic disease [3]. A stroke can have consequences for a person in their daily life or their social participation because of physical, cognitive, emotional or social problems and often results in greater dependence on support of others in everyday life [4–8]. Typically, such support is delivered by family members, so-called family caregivers or informal caregivers [9–14]. The support from family caregivers ranges from giving emotional support, taking care of social and financial matters, organising daily routine household tasks, or providing nursing care without pay or specific training and support in these areas [15–17].

Numerous studies have noted that a lack of knowledge about the impacts of a disease and inadequate support from health professionals create serious uncertainties for family caregivers and can lead to a lower quality of life for the caregivers [18–22]. In particular, the new challenges and responsibilities inherent in the caregiver role affect family caregivers’ health negatively [18,21,23,24]. Furthermore, difficulties in understanding the impacts of the post-stroke person’s impairments on the caregivers’ everyday lives and the need to focus on the caregiving task with no time for other activities such as leisure or social contacts could foster additional negative effects on health [18,21,23,24].

How to deal with and manage new everyday situations is a challenge for both the person after a stroke as well as the family caregiver [25–27]. A systematic review has shown that interventions that promote the ability to deal with the consequences of a disease improve health outcomes and reduce healthcare utilisation [23]. Self-management is a concept that can be used here [15,28–31], however, the definition of the concept is developed and described for the way patients manage themselves and not focused on family caregivers. On a general level self-management is described as the day-to-day management of individuals over the course of a disease and is influenced by the relationships among the patients and their health care providers, friends and family members [32]. Researchers name such skills as “problem-solving,” “decision-making,” “using resources,” “forming a partnership with the health provider” and “goal setting and action planning” as self-management skills that contribute to the ability to better deal with the new situation after the onset of disease [33,34,p.10;35,p.99].

Research in geriatrics has shown that self-management of family caregivers seems to be more complex—it is described as a kind of double self-management [15]. It involves the management of the life of the person post-stroke but also the management of their own life with a new role as a caregiver [15].

Previous researchers have indicated the need for family caregivers to develop their own self-management skills and that they should be involved earlier than during rehabilitation in interventions to support them in developing self-management [15,25,28]. However, this recommendation to start earlier by involving family caregivers is not yet effectuated. Satink et al. [25] indicated that in addition to the self-management of persons after strokes, healthcare professionals should also pay attention to the self-management of the family. He studied self-management of partners in the chronic phase after stroke. What is lacking is knowledge about how partners manage the new situation directly after their partner has a stroke.

Research shows that the support needs of family caregivers can start from the moment of diagnosis during acute care [36]. Acute care in Switzerland is defined as the time of acute care hospitalisation, starting with admission to the hospital until discharge to rehabilitation or home and is on average around 5.5 days [37,38,p.2].

In summary, limited literature on how family caregivers manage the new situation post-stroke in the time of acute care has led to a knowledge gap. To date, the published research has focused on family caregivers’ self-management interventions and experiences during rehabilitation or after discharge to the home, even though different studies have reported that family caregivers enunciated a need for support in learning to live in their new situation earlier on the timeline and as soon as possible post-stroke [15,25,28]. Therefore, questions arise on how to best support the development of self-management skills among family caregivers in acute care. To adequately support family caregivers of persons post-stroke from the start, and to develop future self-management interventions, we aim to gain a better understanding of family caregivers’ experiences at the time of acute care and thus a better understanding of how they manage their new situation.

Methods

In this study, we chose the qualitative descriptive methodology based on a social constructionists’ epistemology, believing in the existence of multiple realities and that knowledge is socially constructed and represented through different experiences and interpretations [39–42]. We used inductive thematic analysis to produce rich descriptions of the experiences of family caregivers [41–45].

Participants and context

We conducted our study in Switzerland. Switzerland has, compared to many other European countries, a strong formal care system—with many and well-educated health providers who are paid for their work—but still relies on family caregivers when it comes to long-term care [12,46].

We recruited eleven family caregivers of post-stroke persons through purposive sampling [47]. The acute care phase is an overwhelming time, and family caregivers in that situation are unlikely to feel that they have the capacity to do an interview [48]. Therefore, we conducted our study retrospectively, scheduling interviews at least 2 months post-stroke (to give the family time to process the initial shock) and a maximum 10 months afterwards. We expected that within this timeframe the participants would still remember their experiences during the acute care of their partner with a stroke. The following were additional inclusion criteria: participants identified themselves as family caregivers of post-stroke persons, the post-stroke person must have been hospitalised, the participant had to be 18 years or older and speak and understand German or Swiss German. To maintain confidentiality in this study, we anonymised all identifying characteristics and used pseudonyms. Furthermore, our study was approved by the Swiss cantonal ethical committee of Zurich (BASEC-Nr. Req-2019-01194), and all participants gave their informed consent prior to data gathering.

For recruitment, neurologists, neuropsychologists, physiotherapists and occupational therapists in hospitals, rehabilitation centres or private practices, as well as organisations for family members of post-stroke persons in Switzerland all acted as gatekeepers and forwarded a study information sheet to potential participants. Interested potential participants could then contact the researcher directly. Verbal information about the purpose of the study was given by phone to 16 potential participants who met the inclusion criteria. Detailed study information and the consent form were also sent to them. Eleven individuals agreed to participate in the interviews, while five persons did not because of lack of time caused by their caregiving tasks. The participants chose the date, manner (phone or in-person) and location for the interviews. Table 1 provides a more detailed description of the participants.

Table 1. Participants’ characteristics (pseudonyms used).

Name	Age in years	Relationship to post-stroke person	Amount of days in acute care for post-stroke person	Months since stroke
Katja	37	Daughter	63	3
Rita	54	Daughter	20	8
Matthias	55	Husband	12	10
Monika	55	Wife	14	10
Peter	56	Son	10	6
Brigitte	57	Wife	8	2
Annemarie	64	Wife	14	3
Margrit	67	Wife	13	6
Maria	69	Wife	12	10
Emil	70	Husband	15	4
Silvia	72	Wife	10	8

Data collection

Family caregivers can find reflecting about the time of acute care to be an emotional experience [48]. Therefore, we conducted individual interviews in a way that gave the participants a quiet environment in which to talk about their experiences. In the interviews, the first author invited the participants to talk about their experiences during the time of acute care after their family member’s stroke. For this purpose, we developed a semi-structured interview guide with both open-ended and probing questions [41,42]. The questions were formulated to include the topics of general experiences during the time of hospitalisation, influences of the new situation on their own lives, challenges in the new everyday situation, strategies and ways of managing it, and information or support needs for managing the new situation.

We conducted a pilot interview with a participant who met the inclusion criteria to ensure the clarity of the questions [49]. The content and procedure after the first interview were then discussed with the third author. As the pilot interview did not reveal a need for changes to the main questions, we included it in the study data [42]. The first author conducted all interviews in January and February of 2020 in Switzerland, in the Canton of Zurich. The interviews lasted between 31 and 74 min. Two of the interviews were conducted by phone, three in a quiet room in a public building and six at the participants’ homes. All interviews were held in Swiss German and were audiotaped.

Data analysis

We applied thematic analysis using the six phases of Braun et al. [50]. In phase one, the first author transcribed the interviews verbatim after Brinkmann and Kvale [51] and read through every transcript several times to become familiar with the data. In phase two, every transcript was coded separately by the first author by drawing on participants’ words for code names and using the software MAXQDA 2020. After coding the interviews, the codes were discussed with the other authors. In phase three, all codes were organised in theme-piles on a pinboard while looking for relationships among them. We displayed the potential themes and their relationships in a mind map and reviewed them with the research question in mind in phase four. In phase five, themes were defined and named and then translated into English. Discussions among all the authors during this phase helped in defining and refining the themes. In phase six, the key themes were recorded in the article. Every theme was described, capturing the content and meaning with the help of representative quotations [50]. For member checking, the themes with a short description were given to the participants to ask for feedback [41]. The feedback about the themes showed that participants recognised the findings fully or partly, which in turn helped to ensure that all perspectives were integrated within the findings. The first author kept a reflective journal documenting the audit trail and reflections about interviews and data analysis throughout the research process. An audit trail is a qualitative strategy to establish the confirmability of a research study’s findings. Confirmability involves establishing that the findings are based on participants’ responses instead of the researcher’s own preconceptions and biases [52].

Results

The analysis resulted in the following four themes: (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information. The following text offers a description of each theme and supporting quotes by participants.

Being in survival mode

Feelings of fear, helplessness and incredibility characterised the first days in acute care. In the participants’ eyes, their world had been turned upside down. Furthermore, everyone described the feeling of being in shock as a first-time experience, some even described it as a traumatic experience. For some participants, the shocking moment ended upon realising that their relative would survive and was on the road to recovery. For others, the shock endured from several days to a week. Characteristic for this shocking moment was how they described their own doing and thinking: The participants reported that during the hospitalisation of their relative, all their thoughts were focused on the post-stroke person. In other words, they found that while thinking about other things, themselves or being aware of how to manage all this, managing themselves was almost impossible. They just tried to survive this situation somehow and everything else in their live stopped for a moment as they were concentrating on the post-stroke person. The time in the hospital was so time-consuming and central to their existence that most of the participants suspended their hobbies or daily tasks. The comment below illustrates how the participants were keenly focused on the post-stroke persons and how they put aside their own needs.

“Of course, certain things are missed out during this time. But you just don’t care, because at this moment the other person needs you more.” (Katja)

Two participants felt unable to do anything in the first hours after the hospitalisation of their relative. These two described the feeling as “being paralysed” or as an “intrinsic powerlessness.” Most of the other participants recounted that they were in a mode where they just worked. They outlined the event as an exceptional situation that offered no choices, where all an individual could do was try to survive it.

“You just try to make ends meet, try to survive this somehow and you simply function.” (Emil)

This mode of surviving and functioning leads to a more rigid way of thinking. Some participants illustrated this mindset as a “tunnel view,” “no time for looking right or left” or “having blinders on.” Not surprisingly, in this mode certain participants spoke about a reduced ability to take in information. Only one person remembered being able to absorb all provided information. However, most participants said they were able to absorb information, but only partly and not too much at a time. Therefore, they found that the opportunity to hear information twice was helpful. The persons who had the impression of paralysis had difficulty retaining any information and only heard a small part of any information given. As Katja said:

“I wanted to listen, but it was not possible. During the whole conversation with the doctor I thought ‘shit, I can’t concentrate’ …”

This reduced retentiveness meant that most of the participants experienced difficulties in making decisions in the acute phase during their relative’s hospitalisation, decisions regarding their own life but also the life of the post-stroke person. The challenge arose not only because of the new situation of deciding for someone else and bearing that responsibility but also because they felt unable to think clearly and lacked sufficient information.

“Well, they have explained it to me, but I was unable to really understand and keep it in mind […] and then I had to decide whether or not to consent to this treatment. In this moment, I was completely overwhelmed.” (Brigitte)

Even small tasks or decisions can be overwhelming at this time, but necessary functioning becomes more difficult when faced with decisions on revitalisation measures or treatments such as surgery.

Feeling supported by family and friends

Most of the participants said that they were accompanied by family members, typically their adult children or siblings, during the acute care period. Every participant saw family and friends as an important emotional support to manage the new situation. Some emphasised the importance of having their family or friends physically with them—for example, when visiting the post-stroke person for the first time or when waiting during treatments or check-ups. Others felt supported when they merely knew someone was thinking of them or regularly asking after them.

“I was not alone, and this gave me a lot of strength.” (Maria)

Several participants who knew that they would have problems assimilating information arranged meetings with the treatment team together with a friend or family member. The social network thus served as a second listener, someone who helped to memorise the information given. A few participants mentioned that when they had to decide something, whether about treatment or the choice of rehabilitation centre, they asked their social network to give advice and help them come to a decision.

Matthias was the only participant who additionally mentioned a negative aspect to the support of the social network, saying:

“I know it was all meant well, but if you’re coming home after a long day in hospital and you have six phone calls on your answering machine, it’s just too much … it dragged me down.”

In short, he sometimes found having an interested social network burdensome. He perceived it as exhausting when everyone asked how things were going, as the sympathy was extensive.

Feeling left alone by the treatment team

The participants all mentioned that the hospital treatment team encouraged them to speak up whenever they had questions. Although everyone appreciated this offer, the reality was that they often found it difficult to reach the right professional when they were in need of information. Some participants even reported not knowing who the reasonable contact person for their questions might be. This experience was often associated with a feeling of distance between the healthcare professionals and the participants with no possibilities of forming a partnership with healthcare professionals. Annemarie said that “it felt like they were far away.”

In half of the cases, the inhibition threshold for addressing healthcare professionals was too high. In particular, participants were afraid to disturb the professionals. Additionally, their awareness of the high time pressure in this field of work inhibited the participants from asking further questions, especially when it involved contacting doctors. The caregivers’ concerns in this situation, besides that of time pressure, included the fear of not understanding the information given because of the barrier that medical terminology presented.

“You don’t understand medical terms if you only speak Swiss German. That’s why I stopped asking.” (Silvia)

Moreover, three participants reported experiences where they—or rather their observations—were not taken seriously. When they observed movements or heard the post-stroke person saying a word no one of the treatment team had recognised before, nobody believed them.

“The nurse said to me that this word was just my fancy.” (Katja)

Another participant told of an event in hospital during medical rounds when he was staying with his wife. As the doctors came into the room, their focus was only on the post-stroke person. They neither looked at the participant nor greeted him.

“The doctors cut me dead, they didn’t even say hello.” (Matthias)

Only a minority experienced being invited to stay during therapy sessions or while nursing care was taking place. The participants who had this opportunity appreciated learning from professionals about handling the post-stroke persons and having the opportunity to ask questions about how to manage the new situation with their relative. They learned how to interact with the post-stroke person by watching the professionals—learning by example. That said, such an opening always happened by chance as participants were never actively invited to attend these sessions.

“I happened to be there, so the therapists let me watch. It helped me to understand the effects of the stroke and how to best support my husband, but unfortunately this was only once.” (Monika)

Other participants were sent away when therapy took place to avoid distracting the person with stroke. This practice often led to incomprehension and the feeling of being excluded. For example, Silvia said:

“The therapist sent me away. In this moment, I could not understand that. It felt like they had a secret I wasn’t privy to and I was standing all alone.”

Insisting on information

In the first hours after their relative’s hospital admission, 8 out of 11 participants received concise verbal information from the doctors about the diagnosis, the leading limitation, and the further medical plan. A few received this information only after asking for it explicitly.

“I noticed that you have to put a bit of pressure on the doctors to get information.” (Peter)

Two participants divulged that most of the conversations with the doctor were only between the doctor and the person with stroke without involving them as relatives. This, in turn, led to the fact that the relatives had to repeatedly ask questions to obtain information as the person with stroke had memory disorders and could not repeat the information correctly. Monika said:

“My husband couldn’t remember what the doctors have told him because of his reduced memory. And again, I had to run after the information.”

Almost every participant experienced having to actively ask for needed information, explanations or help from the treatment team. Several participants used expressions like “fight for,” “insist on” or “put pressure on” in this context.

In general, most participants felt they were not well informed. When they did not receive the desired information from the healthcare professionals, participants tended to look up information on the internet or ask their social network for help. Their internet searches mostly involved the diagnosis of stroke, its symptoms and possible treatment. When they asked the social network or professionals, questions were mainly about decision-making, the chance of recovery or dealing with limitations and managing their impacts on daily life. Self-acquired information was in written form; in contrast, the answers and knowledge that came from health professionals were only provided orally with the added disadvantage of hearing this information once. However, nearly every participant thought finding information by themselves was exhausting, and they strongly wished that the treatment team would engage in proactive behaviour.

“You really need to stay on the ball and make sure that you can talk to someone. […]. And this was exhausting, it really takes it out of you. I wished the treatment team would have come to me more actively.” (Emil)

However, for some participants, the independent search for information also held positive aspects. A few mentioned that when looking up information, they highly appreciated the possibility of reading the information several times and taking the time they needed for comprehension. In short, participants appreciated written information. For four participants, this task also aided them in distracting themselves from thinking too much.

Because knowledge helped most of the participants to order their thoughts and impressions, to feel more secure and to facilitate their skills of decision-making, their desire for information was strong. As Brigitte said:

“I was soon looking for information as it helped me to structure my thoughts and it reduced my fear.”

One participant proved an exception. Margrit commented:

“I was in shock and honestly, I didn’t really want to know. It would have scared me too much.”

Margrit was the only participant who was neither actively looking for information nor interested in having a conversation with the treatment team. For this family caregiver, getting information meant knowing more about the possible consequences of the stroke, which in turn meant she had to face the truth and be prepared for limitations. Therefore, having less information served as a kind of self-protection while she was still in a shock.

Discussion

The study findings revealed that the experiences of family caregivers of post-stroke persons during acute care start with being in survival mode, which includes the impression of being in shock. During the duration of acute care, family caregivers feel supported by family and friends while feeling overlooked and neglected by the treatment team. Furthermore, the findings show that a primary need during acute care is to receive information. However, family caregivers often must insist on being given information and actively gather it.

We will discuss the findings by using the concept of self-management, specifically whether and how the self-management skills “problem solving,” “decision making,” “using resources,” “forming a partnership with the health provider “and “goal setting and action planning” can be recognised in the experiences of family caregivers during the time of acute care.

One finding of this study shows that the time when a person with stroke is receiving acute care is a difficult and exhausting time for family caregivers. Likewise other research about family caregivers during acute care describe the feeling of shock, anxiety, and the lack of capacity to take in information during this time [53,54]. Our results add that being in a kind of survival mode characterises the time of acute care and therefore speaks of the need for special attention. Furthermore, these findings contribute to the understanding of self-management, highlighting that during acute care, survival mode manifests in varied ways—from a feeling of complete paralysis, or the desire to let no information get to you, to being in a mode of focusing only on necessary functions. This, in turn, has consequences for family caregivers’ ability to receive and retain information as well as their learning capacity. The findings indicate that in this initial period of survival mode, which can last from hours to days, the development of self-management skills is overridden, because during this time, all the energy and focus is on the survival of the person with stroke, with no room for other things or information.

Furthermore, the findings show that once family caregivers have overcome survival mode, they are looking for information and education to deal with the impacts of their relatives’ strokes. Additionally, the participants in this research study confirmed the early need for information to be able to better react to demanded tasks or skills such as decision-making. This finding points to the concept analysis of self-management described by Van de Velde et al. [34], which asserted that being informed is important for developing and implementing self-management skills, especially decision-making. As most of the family caregivers felt they were not well informed, it is not surprising that decision-making was perceived as difficult. This result matches observations from earlier studies [39,55,56]. Our results add that in the first time during acute care family caregivers often base their decisions on their social network, meaning that they ask family or friends for advice and make decisions together. This can be seen as a first step of developing self-management by using co-management with family and friends to manage the new situation together. Compared to earlier research about self-management of family caregivers, the finding that family caregivers initially use co-management with family or friends and shared decision making is new. So far research about family caregivers’ self-management only described co-management with the person with stroke [15,25,26,57].

Additionally, the social network was not only supporting decision making—family caregivers also asked them to accompany them to meetings with health providers. This strategy was used because of the reduced retentiveness during the initial shocking time. It describes their way of problem solving and can be seen as a further step in developing self-management skills.

Another finding of our study is that the skill “forming a partnership with the health provider” had not yet been developed by family caregivers, nor was it promoted by health professionals. Family caregivers in this study often felt left alone or overlooked by health professionals, in agreement with research by Luker et al. [58] and Major et al. [59]. Moreover, such perceived distance regarding health professionals impedes the formation of a partnership which would be important in developing self-management.

Because of the perceived distance from health providers, which means no one to ask or gain knowledge from, it becomes more important for family caregivers to find different resources for getting information.

Van de Velde et al. [34,p.7] described the skill of “using resources” as “having access to the right resources such as websites, libraries, community agencies and so on.” The findings of our current study add to this knowledge that family caregivers are and must be active in looking for alternatives in addition to information from health professionals. Starting to find different ways of collecting knowledge could also be seen as a step towards the development of the skill of “problem-solving.” However, the quality of self-gathered information by family caregivers is not guaranteed. Therefore, to improve the quality of information seeking by family caregivers, health professionals should ideally recommend useful and trusted websites or other resources.

In all, health professionals should preferably take a more active attitude towards family caregivers and thus offer the opportunity to establish a partnership with them to start developing self-management skills, even though time in acute care is short. All members of the interdisciplinary team should support caregivers’ development of self-management skills because their work is complementary [60]. However, to fulfil these recommendations, healthcare professionals must be trained in understanding and supporting the concept of self-management beyond family caregivers. Consequently, distinguishing between different forms of self-management such as self-management of persons post-stroke, self-management of family caregivers and co-management or family-management in the sense of a family-centred approach is necessary [61,62]. Furthermore, health professionals’ awareness of family caregivers’ needs should be increased.

Although earlier studies found a combination of written and oral information compared to only oral information to be more effective for improving knowledge during acute care [63,64], our study’s findings revealed that most health professionals only provided information orally. Our findings demonstrate the participants’ intense appreciation for written information in addition to oral information because of the possibility of repeated reading and taking the time needed to understand, paralleling the conclusions of Friedman et al. [65]. However, written material should be tailored to the receiver and thus requires preparation time [65,66], which is difficult within the busy and short time in acute care, so different types of providing information should be considered. On this topic, researchers have recommended methods such as audio recordings of conversations with the treatment team or e-health programmes [67,68]. Another possibility, which our study’s findings add to the theme “feeling left alone,” concerns visual learning, particularly learning by example. To date, researchers have focused on written and verbal information delivery; thus, little is known about visual learning among family caregivers [68,69]. However, as learning styles and preferences differ from person to person, more research is needed to determine whether family caregivers may profit from visual learning in the acute care setting.

Self-management support of family caregivers includes supporting the caregivers’ role-management and therewith their balance of activities [15,25,30]. Our findings point out that many family caregivers in acute care have built up their life around hospital visits with their focus on the post-stroke person and have given up many of their usual activities from the time their relative’s stroke occurs. This outcome is consistent with previous research, in which family caregivers expressed that finding time for themselves was difficult [23,25,70,71]. Because the literature has revealed that an imbalance of activities can affect health negatively [23,72], proper support for family caregivers to understand their vital need for a balance of activities and role-management is preferable. This finding can inform health care professionals to address this topic from the beginning.

Methodological considerations

Throughout the research process, the first author kept a reflective journal and audit trail to stimulate and systemise reflections about decisions regarding data collection and analysis for better confirmability [52]. Additionally, continuing discussions within the author group helped to further stimulate reflections and ensure trustworthiness [40,52,73].

To promote the credibility of this research in terms of data gathering, we tested the interview guide through a pilot interview [52]. Additionally, we used member checking in the form of themes checking to examine whether themes were consistent with the experiences of the participants and thereby contributed to the enhanced credibility of our research [41]. As meaning can become lost through translation, we followed the translation recommendations of van Nes et al. [74] for qualitative research by staying in the source language Swiss German as long as possible to reduce translation bias.

Regarding transferability, no generalisations of the findings can be made because this study comprised qualitative research [75]. However, the findings might support health care professionals in recognizing the experiences of family caregivers of persons post-stroke during acute care. The findings are limited to the context of Switzerland and the family caregivers of post-stroke persons. Nevertheless, countries with similar healthcare systems might also profit from this study’s findings, with due consideration for sociocultural differences.

Although our research findings cannot be generalized to all family caregivers, acute care is likely to be a shocking and difficult time for family caregivers of persons with other diagnoses than stroke. Some parts of the findings, like the knowledge about survival mode, co-management with friends, or about the importance of balanced activities, could be applied to other family caregivers of persons with another diagnosis in acute care. That said, more research is needed to investigate whether family caregivers of persons with other diagnoses than stroke perceive the experience similarly.

We must be aware that different relationships between family caregivers and the person with stroke can influence the results. However, in the included sample, a variety of family caregivers is represented and the representation of more women and mostly spouses is in line with Swiss statistics about family caregivers, showing that women and spouses most often act as family caregivers [46].

The sample size is rather small, but it is in line with the recommendations of Braun and Clarke [42,p.16,p.48] for a project of this size using this method.

Because interviews were conducted retrospectively, between 2 and 10 months post-stroke, participants might have forgotten particular experiences, which could limit the findings. On the other hand, participants may have had an emotional distance that could have enhanced their reflexivity about their experiences. Moreover, participants recognized and agreed on the themes during the member check.

Conclusion and implications

Our findings revealed that during acute care, many self-management skills are required from family caregivers but are just starting to be developed. Furthermore, family caregivers are receiving little support in this area from health professionals. Our research demonstrated that the family caregivers of post-stroke persons feel abandoned by health professionals during the time of acute care. Therefore, a shift in the thinking of health professionals (but also a change in the whole health care system) towards paying attention to family caregivers and their support needs during this time is necessary. Furthermore, a proactive attitude towards family caregivers is required, and all members of the interdisciplinary team should be involved because their work is complementary. Our research showed that during the time the post-stroke person is in acute care, providing information and education to their family caregivers is central as it is the basis for establishing self-management. Therefore, healthcare professionals should be aware of the importance and different forms of self-management and how to support self-management skills. During the time of acute care, it seems important to acknowledge the influence of the social network for family caregivers to develop co-management with family or friends as a first step towards self-management—especially the skill of decision-making.

During acute care, family caregivers are often in survival mode, which may limit their capacity to take in information. Therefore, repeated information, delivered through different methods such as verbal, written, visual or audiotaped, is recommended. Additionally, health professionals should provide suggestions for useful webpages, e-health programmes, or other resources.

Family caregivers’ self-management begins in acute care, however, reduced health and well-being caused by role changes and an imbalance of activities is a significant problem for them. Therefore, health professionals should raise awareness of this topic among family caregivers from the start to prevent negative influences on health and the ability to develop their self-management.

In the introduction of this article, the definition of the concept of self-management was criticized as focusing only on persons with a disease. For practice and research, the next step in understanding and developing the concept of self-management is to develop a definition that covers the self-management of persons with a disease as well as their family caregivers.

Acknowledgments

We thank all the family caregivers of post-stroke persons who were willing to share their experiences. We based this article on the first author’s master’s thesis, therefore we also thank colleagues and examiners for reviewing the paper.

Disclosure statement

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

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.