When the Home Becomes the Setting for Hospital Treatment: A Qualitative Study of Relatives' Experiences

ABSTRACT

Aim

The aim of the study is to explore the experiences of adult relatives who cohabit with patients receiving hospital‐at‐home (HaH) care. The healthcare system is increasingly adopting HaH as a response to hospital overcrowding and the growing need for personalised, home‐based care. While HaH has been shown to benefit patients, there is limited understanding of the impact on cohabiting relatives, who often assume a caregiving role without adequate preparation or support.

Design

A qualitative inductive approach.

Method

Semi‐structured interviews were carried out with 10 cohabiting relatives of HaH patients from North Zealand and Denmark. Data collection took place over two periods between March 2023 and February– April 2024. Data were analysed using inductive qualitative content analysis to identify key themes in the relatives' experiences.

Results

Relatives reported mixed feelings about HaH. While they appreciated the ability to be close to their loved ones and maintain a more normal daily routine, some felt overwhelmed by the caregiving responsibilities imposed upon them. The lack of involvement in treatment decisions, sometimes inadequate communication from healthcare professionals, and the pressure to manage both practical and emotional aspects of care were among the concerns. However, despite these challenges, relatives strongly preferred HaH over conventional hospital admissions due to the reduced disruption to their daily lives and the perceived improvement in their loved ones' well‐being.

Conclusions

Although HaH presents additional burdens and concerns for relatives, they prefer this model of care over traditional hospitalisations. However, it is crucial that relatives are actively involved in the decision‐making process and provided with adequate support to manage the caregiving responsibilities effectively. This involvement can help ensure a more positive experience for both relatives and patients, contributing to the overall success of HaH.

Implications for the Profession and/or Patient Care

This study emphasises the vital role of relatives in HaH care, highlighting their preference for HaH despite the additional burden. Healthcare professionals must involve relatives in decision‐making and provide adequate support to manage caregiving responsibilities. A more individualised approach can enhance the caregiving experience, reduce stress and improve patient outcomes.

Impact

This study fills a gap in understanding relatives' experiences in HaH care, stressing the need for better communication and support. By involving relatives more effectively, healthcare professionals can improve the success of HaH and reduce strain on healthcare systems.

Reporting Method

This study adhered to the COREQ criteria.

Patient or Public Contribution

No patient or public contribution.

1. Introduction

As hospital‐at‐home (HAH) becomes a more integrated part of the healthcare system (Varney et al. 2014), the role of relatives in supporting patients throughout the treatment process becomes more prominent. Concerns have been raised about the burden of care associated with receiving hospital treatment at home, which may influence patients' decisions to accept the offer (Chua et al. 2022b). For patients receiving hospital at home, a strong social network can be crucial, and relatives play a significant role (Chua et al. 2022b; Karlsen et al. 2023). Despite this knowledge, attention has primarily been focused on the clinical and logistical aspects (Chua et al. 2022a; Edgar et al. 2024) as well as the safety and effectiveness of HaH (Leong et al. 2021). The experiences and needs of relatives under HaH still remain underexplored. Therefore, the aim of this study is to explore the experiences of adult relatives who cohabit with patients receiving HaH.

2. Background

Globally, the capacity of healthcare systems is being challenged by several factors, such as nursing shortages, the increasingly ageing population and rising chronic diseases (World Health Organization 2020) There is a growing demand for health services, leading to an urgent need for the availability of hospital beds (Chua et al. 2022a; Danish Government 2022). A reduction in the number of hospital beds has been observed, along with shorter hospital stays for patients, which aligns with political objectives aimed at expanding outpatient care closer to patients' homes (Knight and Lasserson 2022; Ris et al. 2019). In Denmark, there is a political emphasis on reducing hospital admissions, particularly for individuals with chronic medical conditions (Danish Government 2022; World Health Organization 2020). The increased pressure on the healthcare system and demands for efficiency are prompting a reorganisation and redefinition of tasks within the healthcare sector (Danish Government 2022), as well as a policy emphasis on care closer to home (World Health Organiazation 2023). There is a necessity to create a more coherent, accessible and robust healthcare system where more citizens are treated in their own homes through cross‐sectoral collaboration (Danish Government 2022). In Denmark (Lavesen et al. 2022; Odense Universitetshospital 2023), as well as in broader international contexts such as Australia, France, England, Spain and Norway (Byrne et al. 2020; Lindberg 2020; Steenberger 2023; Vale et al. 2020), there has been a growing interest in the provision of HaH services. The concept of HaH involves health professionals providing hospital treatment in the patient's home for a limited period, treatments that would otherwise require acute hospitalisation (Shepperd et al. 2022). HaH is the provision of hospital‐level care in the patient's own home for those with stable medical and surgical conditions who require subacute care and treatment (Byrne et al. 2020). Denmark has seen an increased focus on treating patients at home, spurred by hospital overcrowding and a desire to ensure continuity in individual care pathways, alongside advancements in technological solutions (Danish Government 2022).

Several advantages for patients who are not being admitted to standard hospital treatment have been observed. An integrative review highlights the reduction in readmissions, higher patient satisfaction and reduced mortality, presumably due to a lower occurrence of iatrogenic infections, delirium, falls and side effects among patients undergoing HaH (Varney et al. 2014). Besides experiencing security and continuity, patients have a greater capacity to engage in their own treatment (Bove et al. 2022). A recent Cochrane review emphasised that HaH likely reduces the risk of older patients transitioning to residential care following treatment and is generally associated with lower healthcare costs. Patients also report higher satisfaction with HaH care compared with traditional hospital stays (Edgar et al. 2024).

HaH is not only a beneficial option; it can also cause concerns for patients to worry about their relatives, which might be a reason for them to decline the treatment offer (Le et al. 2022). HaH can be more advantageous if the patient is cohabiting with a relative or has an accessible network (Chua et al. 2022a). Relatives play a significant role in the patient's everyday life in connection with illness, hospitalisation, treatment and convalescence (Dansk Selskab for Patientsikkerhed 2016; Shepperd et al. 2022). They generally experience great satisfaction in assisting and wish to actively contribute to a disease and treatment process (Ældre Sagen 2021), which also contributes to quality of life and recuperation. During HaH, relatives play a crucial role in supporting the patient (Shepperd et al. 2022), and there is a need for them to be involved in planning and to have expectations of their role in the treatment process clarified (Spina et al. 2022). In recent years, the importance of involving relatives in patients' disease trajectories has gained increasing recognition, with broad political support due to its positive effects on patient outcomes, quality of life, satisfaction and safety (Guldager et al. 2023a, 2023b). Despite this, implementation remains challenging, and evidence on effective involvement strategies is lacking. Research indicates that involving relatives enhances treatment outcomes, psychological well‐being and patient safety; yet barriers persist, and caregiving burdens may lead to distress and unmet needs over time (Baines and Regan De Bere 2018; Correia et al. 2023; Dansk Selskab for Patientsikkerhed 2016).

Research indicates that relatives have varied experiences regarding whether HaH induces stress. Patients express concerns about the caregiving burden on their relatives, who tend to experience increased pressure and stress (Rossinot et al. 2019). Despite this, relatives feel a sense of responsibility that they do not wish to relinquish (Sagen 2021) and may be more inclined to choose HaH due to the patient's preferences (Karlsen et al. 2023). According to a scoping review, effective communication about care plans and treatment information, as well as collaboration between patients, relatives and the HaH team, is crucial. Relatives need both training and support to become more secure in handling potential problems during the treatment process (Wang et al. 2024). While HaH has demonstrated clear benefits in terms of patient outcomes, its success also dependent heavily on the effective integration of relatives into the care process and addressing their unique challenges. This includes providing sufficient support and ensuring a balance between caregiving responsibilities and the relatives' own well‐being (Edgar et al. 2024). Although research highlights the negative impacts on relatives, it also emphasises positive aspects, such as staying together as a family and potentially reducing stress associated with travelling between the hospital and home and having obligations at both places, that are emphasised (Karlsen et al. 2023).

The healthcare system is constantly evolving, yet little is known about the experiences of adult relatives of patients receiving HaH care. The evidence on stress and burden among relatives during HaH remains inconclusive (Chua et al. 2022a; Rossinot et al. 2019). Given the increasing implementation of HaH, it is crucial to understand how relatives perceive the integration of hospital care into their home environments. However, current research on this topic is limited, particularly regarding a qualitative approach that allows for a deeper exploration of relatives' experiences with HaH. Moreover, concerns raised in previous research underscore the need for further investigation into the perspective of relatives (Bove et al. 2022; Edgar et al. 2024; Le et al. 2022; Rossinot et al. 2019). HaH places increased responsibility on relatives to monitor and ensure the safety of care within the home (Mäkelä et al. 2020; Stie et al. 2020). Therefore, the aim of this study is to explore the experiences of adult relatives who cohabit with patients receiving HaH.

3. Methods

3.1. Design

This study adopts an inductive qualitative approach, allowing findings to emerge from the data rather than being shaped by a pre‐existing theoretical framework (Graneheim and Lundman 2004). An inductive approach is particularly suitable when exploring participants' experiences in complex health settings, as it ensures that the analysis remains open to unexpected patterns and insights (Charmaz 2014). Given the exploratory nature of this study, the themes identified are grounded in participants' own narratives rather than imposed from existing models. Data ere constructed through 10 semi‐structured interviews with cohabiting relatives and then thematised based on Lundman and Graneheim's inductive approach (Graneheim and Lundman 2004).

We utilised the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist to ensure adherence to recommended standards for reporting qualitative data (Tong et al. 2007).

3.2. Setting

The study was conducted in the Northern part of Zealand in Denmark. In the local university Hospital, which serves as an acute care hospital for a population of 315,000 residents (North Zealand Hospital 2023), a cross‐sectorial and interdisciplinary team called TST (TST), comprising nurses and physicians, has been established in 2019 (Lavesen et al. 2022). This team collaborates across hospital departments, general practitioners and municipal healthcare services to provide treatment to patients in their own homes. Services include intravenous antibiotic therapy, professional nursing support and early detection of illness, with the aim of preventing hospital admissions. In 2021, half of the interventions were carried out in patients aged 80 and above, primarily addressing infections, dehydration, palliative care needs and various instrumental tasks (Lavesen et al. 2022).

3.3. Recruitment

Through a purposive sampling strategy, 10 informants were recruited by nurses from the cross‐sectoral team, which included a discharge team and the TST. All informants were recruited during their relative's hospitalisation, either from the emergency department when HaH had been initiated or when the TST had assessed the patient as stable enough for HaH without hospitalisation. After the informants agreed to participate, the first author contacted them by telephone to confirm their continued interest and arrange a suitable date and time for the interview. Recruitment took place over two periods, from 06.03.23 to 31.03.23 and from 20.02.24 to 16.04.24, with five informants recruited in each period. Recruitment continued until data saturation was reached, defined as the point at which no new information or insights emerged from the last few interviews (Polit and Beck 2017). The eligibility criteria for the purposive sampling strategy were designed to ensure variation in participants' experiences, allowing for an in‐depth exploration of the phenomenon of interest, HaH. The inclusion criteria are outlined in Table 1, while informant characteristics are presented in Table 4.

TABLE 1.

Inclusion criteria.

Inclusion criteria	Exclusion criteria
Cohabiting either spouse or other relationship	Relatives of HaH patients in a nursing home or rehabilitation centre
Living in own home	Relatives with dementia
Relatives of patients who receive HaH, alternative to hospitalisation	Relatives of HaH patients who is not cohabiting
Relatives who speak and understand Danish	Terminal patients
Cognitive well‐preserved relatives	Relatives < 18
Relatives > 18

TABLE 4.

Characteristics of the relatives and the patients.

The relative's information				The patient's information
Gender	Age	Relationship	Employment	Diseases	Treatment	HaH days	Day at hospital before HaH	Home care services a
Female Informant 1	76	Married	Retried	Cystitis	IV AB × 3 daily	3	1	6 × daily
Female Informant 2	63	Married	Flexible job	Erysipelas	IV AB × 3 daily	6	1	None
Female Informant 3	71	Partners	Retried	Cystitis	CADD pump	6	1	Just started 3 × daily
Female Informant 4	75	Married	Retried	Pain treatment	Phone call and 2 visit	30	1	None
Male Informant 5	76	Married	Retried	Pneumonia	IV AB × 2 daily	4	1	None
Female Informant 6	76	Married	Retried	Pneumonia and fistula infection	CADD pump	5	1	once a week
Female Informant 7	61	Married	Flexible job	Pneumonia	CADD pump	7	0	5 × daily
Male Informant 8	72	Married	Retried	Erysipelas	IV AB × 3 daily	6	0,5	None
Female Informant 9	63	Daughter	Self‐employment	Cystitis	CADD pump	5	3	None
Female Informant 10	76	Married	Retried	Pneumonia	IV AB × 4 daily + CADD pump	14	16	None

Abbreviations: CADD‐pump, antibiotic infusion pump; IV AB, intravenous antibiotic treatment.

^a Home care services are a municipal service that is independent of HaH. E.g. personal care and toilet visit.

3.4. Data Collection

Over a period of 3 months, interviews were conducted individually by the first and last authors, both of whom are female. Semi‐structured interviews were chosen as the method to explore relatives' experiences with HaH, allowing for an in‐depth examination through dynamic interaction between questions and responses (Brinkmann and Steinar 2018). The interviewers were both registered nurses: one clinical nurse specialist with practical experience in the field, and the other a research manager with extensive experience in conducting qualitative research. Neither interviewer was involved in daily clinical practice; however, the first author was employed at the same department from which the participants were recruited. A semi‐structured interview guide (See Table 2) was developed to support the interviews, informed by the first author's prior knowledge, professional experience in the field and existing research (presented in the background section of the article) (Bove et al. 2022; Varney et al. 2014; Wang et al. 2024; Wang et al. 2012; Ældre Sagen 2021). The interviews had an average duration of 44 min, ranging from 33 to 63 min. Interviews were conducted in the informants' own homes, except for one interview, which took place in a meeting room at the hospital, as per the informant's preference. In most cases, the interviews were conducted solely between the researcher and the relative. However, in two instances, the patient was also present at the request of the informant. Immediately after each interview, the first author transcribed the recordings verbatim.

TABLE 2.

Interview guide.

Interview questions
Please describe the situation you and your relative are currently in?
How have you experienced being involved in this process?
How do you experience being a relative of someone receiving hospital treatment at home?
What is it like for you as a relative to have HaH in your home? – What are your thoughts of HaH as an alternative to hospitalisation?
How do you feel about the absence of healthcare professionals at home compared to a hospital setting?
How do you experience the responsibility of being a relative in an HaH setup?
Please describe the changes HaH has brought to your everyday life?
Please describe the tasks or responsibilities you have taken on as part of HaH?
In what ways has HaH required resources from you, if at all?
What do you see as the benefits and challenges of HaH compared to hospitalisation?
Have you thought of anything else along the way that you would like to share or any final comments?

3.5. Data Analysis

The data analysis in this study was conducted using qualitative content analysis with an inductive approach, as outlined by Graneheim and Lundman (Graneheim and Lundman 2004). This method systematically analyses written, verbal or visual communication by moving between the whole and its parts throughout the analytical process. The analysis began with multiple readings of the interviews to develop an overall understanding of their content. Meaning units relevant to the study's aim were then identified, condensed and coded into descriptive labels based on their content. These codes were further abstracted, interpreted and compared for similarities and differences, leading to the development of tentative sub‐categories, which were subsequently aggregated into four main categories representing the manifest content of the interviews—referring to their explicit, visible components. Each category was based on four to six codes.

Throughout the process, the authors engaged in continuous discussions to ensure consensus. Selected quotations were carefully translated to illustrate examples within each category. To explore the underlying, latent meanings, the analysis extended beyond the manifest level, adopting a more interpretive approach to formulate a theme that captured the deeper meaning behind participants' descriptions, thereby representing the latent level of analysis. An example of the analysis can be found in Table 3. This iterative and reflective process ensured that both the manifest and latent levels of the interviews were thoroughly examined, providing a comprehensive understanding of the participants' experiences (Graneheim and Lundman 2004).

TABLE 3.

Example of the analysis.

Quotes	Codes	Subcategory	Main category	Theme
“no, I almost don't think this could be more uh, perfect if you can say that”	Almost perfect	HaH course	Home treatment: A preferred approach	Balancing Personal Resources in the Domestic Sphere When HaH Moves Indoors
“I am not responsible myself. It's not something I have to figure out what to do myself”	Not responsible	Responsibility	Shared responsibility
“no not really, no. It had to, I was sure they would take care of it, they are professionals after all”	They took care of it	Competent	Trust considered a prerequisite
“when you've just got used to this routine, you go back to the old one, but it works, of course it does”	Get used to the routine.	Daily life	The compromise of everyday life

3.6. Ethical Considerations

In this study, we adhered to the Declaration of Helsinki (Declaration of Helsinki 2022). The study was approved by the Danish Data Protection Agency (J. No. p‐2024‐15,373, 15.01. 2024). Participation was voluntary, and all informants who agreed to participate were provided with both oral and written consent information prior to the interview. Written informed consent was obtained, and participants were informed about confidentiality, the assurance of anonymity and their right to withdraw at any time without consequences. All data were handled in accordance with GDPR regulations (European Union 2016) and stored securely on a closed drive accessible only to the authors. Additionally, the study received approval from the TST management.

Ethical considerations were also considered during the inclusion and exclusion process, particularly concerning the mental health of relatives, including those with dementia or those at risk of increased frailty, such as relatives of terminal patients. We made efforts to conduct the interviews in a respectful manner, constantly reflecting on the potential vulnerability of the participants and the delicate situation they might be in while sharing their experiences during the interviews.

3.7. Rigour and Reflexivity

In this study, reflexivity and rigour were fundamental in ensuring the credibility and trustworthiness of the findings. The first author, a clinical nurse specialist with a master's degree and previous experience as a registered nurse in the same department where the study was conducted, had no prior patient history with any of the participants' relatives. This precaution was taken to minimise potential influence on the results. However, continuous attention was given to how the first author's background and professional affiliation might shape the analysis. Regular meetings and discussions between both authors helped mitigate potential bias and enhance the study's dependability. To further establish trust in the findings, qualitative rigour was reinforced through an ongoing process of reflexivity. Reflexive practice involved continuous reflection on personal, interpersonal, methodological and contextual factors that could influence the research. Transparency was maintained by making research choices and decisions explicit, and member checking was integrated throughout the interviews to validate initial interpretations. Additionally, the authors made a concerted effort to remain close to participants' own words and expressions, particularly at the manifest level of analysis. Reflexive discussions were conducted throughout the analysis, drawing on the two‐dimensional model of qualitative rigour described by Graneheim et al. (Lundman and Graneheim 2017), which supported a deeper understanding and strengthened the credibility of the interpretations.

4. Findings

4.1. Characteristics of Participants

This study involved 10 semi‐structured interviews with ten10 cohabiting relatives of patients who received HaH. Table 4 provides a detailed description of the relatives' and patients' characteristics. A common characteristic among the participants was that they lived together during HaH and had a long‐term relationship, either as spouses, partners or family members. All relatives resided in different cities across North Zealand. Three out of 10 were still employed, and all had an educational background, working in various professions. Some participants had attained higher education, while others belonged to the working class. None of the relatives received home care and managed independently. Four out of 10 had previous experience with home care services, whereas the remaining six were unaccustomed to having healthcare professionals in their home. Additionally, two participants were already familiar with the HaH service, as their cohabiting relative had previously received it.

4.2. Results of Data Analysis

The analysis generated one overarching theme: Balancing Personal Resources in the Domestic Sphere When HaH Moves Indoor, as it appeared to be a pervasive and underlying trait across the four categories that were identified in relation to the aim of this study, as illustrated in Figure 1.

FIGURE 1.

Results of analysis.

4.2.1. Theme: Balancing Personal Resources in the Domestic Sphere When HaH Moves Indoors

A key underlying theme across the four categories was that HaH was not a choice the relatives could influence, as the mode of treatment was determined by the hospital without their involvement. Throughout their reasoning and reflections on being next of kin to a cohabiting patient in HaH, it became evident that they accepted HaH as a given rather than a choice to be questioned. The relatives placed trust in the healthcare system's assessment that conventional hospitalisation was unnecessary, based on the understanding that their loved one was not critically ill and that HaH also contributed to the greater societal benefit of freeing up hospital beds. Thus, HaH became an external decision that relatives had to navigate within its predefined framework—a choice they supported, advocated for and experienced as beneficial both for themselves and their cohabiting relative. However, this choice also required a delicate balance: on the one hand, they welcomed their cohabiting relative home, appreciating the emotional and practical benefits of being together, while on the other, they sacrificed their own needs and resources to ensure the success of the hospital treatment at home. The desire to care for their ill cohabitant and to create the best possible conditions for treatment became a pivotal point, offering them a role in the illness trajectory—an opportunity they embraced, particularly if they were already accustomed to an active caregiving role.

For relatives who themselves were managing illness or cohabiting with a chronically ill partner, this balance was particularly challenging, as conventional hospitalisation could also provide a much needed respite.

4.2.2. Home Treatment: A Preferred Approach

The relatives unanimously favoured HaH over conventional hospitalisation in a ward. This preference was driven by several factors, with many citing previous hospital experiences, which were not always positive. While these experiences were not necessarily associated with specific adverse events, they were often linked to the patient's dislike of the hospital environment, boredom or emotional distress. The relatives perceived these experiences as having a detrimental effect on the patient's well‐being and feared that such distress might hinder their recovery.

Thus, I think that one would feel better within oneself, more healed, if one is in good psychological health. If one is sad and feels like a burden, or has experienced loneliness, then… (Informant 9).

Most patients who received HaH had previously been admitted to an acute ward, either due to an emerging complication, such as an infection, or a deterioration of their primary illness. Consequently, the acute ward experience shaped the relatives' perception of home treatment. Many described the acute ward as rushed and chaotic:

And out in the corridor, everywhere there was not a door, there lay patients, nearly stacked on top of one another. We had to pass between two. One was shouting and in a great deal of pain on one side of the curtain, and on the other, someone was shouting even louder and groaning constantly… it's dreadful, we write 2023 and it looks like this (it's messy), (Informant 5).

This busy and distressing hospital environment led the relatives to perceive HaH as a relief, offering a more peaceful and controlled setting for treatment.

From the relatives' perspective, home treatment was not only beneficial for the patient but also offered practical and emotional advantages for themselves. It eliminated the daily travel to and from the hospital, which for some was both time‐consuming and logistically challenging. Additionally, having a loved one hospitalised could create a sense of personal strain, as they felt torn between hospital visits and everyday responsibilities:

I mean, it's also stressful to have a loved one in a hospital (…) You feel torn between being with your husband and, at the same time, managing all the practical tasks that need to be taken care of. But when he's at home, you can bring it all together. So, you don't feel torn, because that's exactly how it feels when you have a loved one in a hospital. (Informant 10).

Moreover, home treatment allowed relatives to spend more time with the patient and stay informed about their condition in a way that conventional hospitalisation did not permit. The ability to monitor the patient's progress and be actively involved in their care reinforced their preference for HaH.

4.2.3. Shared Responsibility

HaH represented a collective responsibility among all involved parties, yet this often manifested without a clear structure or defined distribution of responsibilities. Despite a perceived shared responsibility, there was widespread agreement that relatives did not feel involved in the implementation of HaH. Although none of the relatives opposed the treatment option, they still wished to be included in the decision‐making process. This desire was particularly evident among relatives of cohabiting who experienced reduced memory:

They didn't know that he couldn't remember things or have his own opinion. Maybe it would have been nice if I had been a bit more involved (Informant 5).

In order for relatives to participate in shared responsibility, they expressed a need for information about what it meant to be home hospitalised. The Interviews suggested that relatives of self‐sufficient patients experienced a lesser need for information compared to those caring for patients requiring more extensive care. This information should include details about the treatment plan, contact information for who to reach before the first home visit and instructions on medication management and handling of infusion pumps in case of alarms:

There was a lack of information on how the ‘device’ worked and what to do if something went wrong with it (Informant 3).

The absence of information and skills to manage various unexpected issues quickly transformed a sense of security into insecurity, significantly impacting the overall experience. Some relatives faced situations where rehospitalisation or a hospital examination was necessary, and they requested to be involved in the process. They wanted to participate in information sharing about what was to happen and have a say in the process and coordination.

Overall, relatives did not perceive themselves as having a greater responsibility under HaH and expressed no concern over the medical treatment and care to be conducted at home. They showed great trust and confidence that the hospital would not send patients home for further treatment if it posed any risk. However, they felt responsible for calling for help if they noticed a change in condition, thereby indeed bearing a greater responsibility, which they emphasised they could not handle if it required professional health competencies. When a particular competence was necessary varied; for some, there were no concerns about being instructed on the infusion pump, while others preferred to leave all responsibility to the nurses:

As long as I did not have to participate and start doing all those things that I do not understand (laughs a little) (Informant 2).

While relatives preferred to leave medical care and treatment to healthcare professionals, they felt a greater responsibility for providing care to the ill, including both psychological support, such as encouragement and discussions about treatment effects, and practical tasks like shopping and ensuring nutrition as part of the patient's convalescence. This additional care, however, was perceived by some relatives as taking on a greater responsibility than their resources allowed:

(sighs a bit), I ran around on autopilot, you know, with this and that, what did he now want, and what did he want now, yes (Informant 3).

Some relatives took a larger role in caregiving by assisting with personal care, administering medications, measuring pulse and blood pressure and helping the patient out of bed. Others found it difficult to assess how much help to provide. In unexpected situations, there was a need to acquire care supplies during treatment, where it was not usual for the patient to need such care. It was challenging for relatives to determine how much help to provide:

(…) at first, I even put the pills into his mouth because they slipped from his fingers, I don't know if we had a pattern of interaction where he perhaps became more helpless than usually (Informant 5)

4.2.4. Trust as a Prerequisite

For relatives, HaH was perceived as reassuring when treating minor ailments, such as pneumonia, cystitis and erysipelas, as these were not considered severe:

It is not life‐threatening what he is suffering from, after all. A bladder infection is not so severe; it is palpable. (Informant 1).

Conversely, relatives expressed concern about HaH for more severe conditions requiring closer observation by doctors or nurses:

Well, you could say if she were more seriously ill (…) then I would probably be more, how should I put it, anxious if she were at home and I knew something could happen. (Informant 4).

Relatives felt more comfortable when nurses visited the home regularly to monitor treatment progress. While casual conversation was a significant aspect of these visits, nurses' kindness, attentiveness and clear communication left a positive impression. However, when interactions lacked respect or professionalism, relatives found them intrusive:

There was one who arrived and managed to enter before we went out to greet her, and she didn't really introduce herself, so I felt a bit, well, it was right on the edge, on the limits of what's permissible, my boundaries. (Informant 2).

Relatives expressed confidence in nurses' competence and professionalism, trusting them to respond effectively to changes in the patient's condition. Some perceived a higher level of professionalism among TST nurses compared to homecare nurses, appreciating the TST's structured schedules, which allowed for a calmer atmosphere and more opportunities to ask questions. In contrast, relatives who primarily interacted with homecare nurses felt disconnected from the hospital, as they had no direct contact with TST doctors or nurses. While some relatives were actively involved in the treatment process, others felt more passive, observing from the sidelines. This lack of involvement did not enhance their trust in the care team. However, all relatives felt reassured by having a direct contact number for a nurse familiar with the case. Conversely, insecurity arose when they encountered difficulties reaching a nurse for assistance:

Suddenly, it beeped, and we couldn't figure out why. I tried calling the department, they didn't answer, and I tried the number I had for the home care nurse, but that didn't go through either. So, I ended up having to call 1813. (Informant 9).

Some relatives felt secure being more actively involved in the treatment, while others preferred a more passive role, trusting the nurses' expertise. However, when medical professionals failed to manage home treatment effectively, relatives' trust diminished. It became evident that trust and security were crucial for HaH to be a successful and reassuring experience.

4.2.5. The Compromise of Everyday Life

Everyday life with HaH was experienced as a duality. On one hand, becoming a caregiver to a patient at home was a new and unfamiliar role for most relatives, requiring adaptation. Some relatives stayed at home more frequently, feeling unable to leave their cohabiting relative alone, while others adjusted daily tasks, such as shopping and cooking, to accommodate HaH. Several relatives expressed a need for more precise scheduling of hospital treatment times:

(…) the doctor's call, and it could be from 8 AM to 10 PM. So last time I should have been to something (…) but because the doctor first called at 1 PM or something, and I had been waiting from 8 AM to 1, I couldn't go shopping because if I am out shopping and he then calls, my partner cannot participate. (Informant 5).

On the other hand, HaH was perceived as being more compatible with daily life, as it seamlessly integrated into established routines without requiring significant changes:

Once you get used to this routine, you revert to the old one, right? But it works, of course, it does. (Informant 2).

Relatives did not find it inconvenient to have nurses visiting the home for short periods, and many continued their daily activities as usual. This was particularly the case for self‐sufficient relatives and those whose cohabiting relative already received home care. Although daily life remained relatively unchanged for many, they still took on additional caregiving tasks. While these tasks were manageable for most, some relatives found them physically and emotionally draining, particularly those with pre‐existing health conditions or those whose cohabiting relative had experienced a decline in functional ability:

(…) when people keep coming all the time, it is indeed exhausting, never having a moment of peace. (Informant 1).

Some relatives acknowledged that hospitalisation would have provided them with a temporary respite from caregiving responsibilities:

I really shouldn't say this, but I will anyway. (…) But then it wouldn't be me who had to care for him if he were hospitalised. (…) Then I could have had a different kind of freedom. But that's just how things are now. (Informant 5).

Relatives who already had a high caregiving burden in daily life appeared to experience a greater need for support during HaH. However, it was often difficult for them to refuse additional caregiving tasks or assess whether they truly needed help. Despite limited resources, many relatives expressed a strong desire to help as much as possible, even when it compromised their own well‐being:

I might get a bit annoyed, but we just have to let that go. (Informant 1).

5. Discussion

The findings of this study highlight the complex and sometimes conflicting role that relatives navigate when HaH is implemented. Relatives frequently prioritise the patient's needs over their own, demonstrating a strong sense of duty and responsibility in facilitating home‐based care. While HaH is often experienced as a natural extension of caregiving, it also introduces emotional and practical challenges, particularly for those already experiencing personal strain. This study reveals that while the relatives do not necessarily perceive an increased medical responsibility, they take on a significant role in daily caregiving tasks, sometimes at the expense of their own well‐being. Additionally, HaH offers several benefits for caregivers, including reduced travel burdens, a familiar home environment and closer proximity to their loved ones, contributing to an overall sense of normalcy. The relational dynamic between the relative and nurses plays a critical role in fostering security and trust, as the relatives value the personalised interactions and professional competence of healthcare staff. However, despite these advantages, our study visualise that relatives are not actively involved in the decision‐making process regarding HaH implementation, leaving some feeling overlooked in a transition that significantly impacts their daily lives. Hence The findings of this study reveal the complex and often conflicting role that relatives face when HaH becomes a reality. It becomes apparent that some caregivers set aside their own needs to accommodate the patient's desire to receive care at home. This willingness to prioritise their loved one's interests is also highlighted in a study by Chua et al. (Chua et al. 2022b), which shows that caregivers are more likely to accept HaH to meet the patient's needs, especially when they believe it will improve their cohabiting's quality of life. Chua et al. attribute this to cultural values, particularly within Asian cultures that emphasise family responsibility. However, our findings suggest a more nuanced view, indicating that this behaviour is not solely culturally driven. The act of setting aside personal needs may be inherent to the caregiving role itself. Caregiving is a fundamental response to the vulnerability of others and involves the ethical duty to maintain the dignity of those in need (Henriksen and J 2000). The Danish philosopher K.E. Løgstrup describes how individuals act with a basic sense of trust and responsibility towards others, often without ulterior motives (Løgstrup 1997). In this light, our findings can be understood as reflecting caregivers' deep, long‐standing relationships built on trust and care. This caregiving role seems to arise naturally and spontaneously, embodying a basic human condition of interdependence. Previous research (Ældre Sagen 2021) has similarly shown that caregivers' motivation in a disease and treatment process is often driven by a desire to be present and share in their loved one's struggles. Karlsen et al. also support the idea of caregivers' altruistic attitudes, noting that they respect the patient's choice to receive HaH care (Karlsen et al. 2023).

However, while caregivers feel a natural obligation to attend to their loved one's vulnerability during HaH, this responsibility also demands significant personal resources. The relatives in our study varied in terms of educational background, but all were over 60 years old, with most being retired. Despite efforts to recruit a diverse sample, all participants were self‐sufficient, meaning the study does not fully represent the most vulnerable group of relatives, which may have influenced their experience of HaH. However, it is important to note that while some had a relative already receiving home care or nursing services, for others, this was their first encounter with such care needs. This variation provides a broader perspective on HaH and may help explain the differences in experiences observed. Our study shows that caregivers experiencing emotional stress find the caregiving role under HaH more challenging. In contrast, those with less personal strain or who care for patients with less severe functional impairments report that HaH is less stressful and are better able to take on caregiving tasks. Karlsson et al. also illustrate that some caregivers struggle to set boundaries and find the caregiving role overwhelming during HaH. Similarly, Rossinot et al. (Rossinot et al. 2019) highlight that caregivers, particularly those who are employed, experience higher physical and mental strain while caring for HaH patients.

The complexity of the caregiver role in HaH includes providing care, coordinating tasks and sometimes engaging in unfamiliar activities, such as monitoring the patient's health. In our study we similarly find that caregivers take on an increased number of tasks during HaH. However, they do not express feeling a greater responsibility for medical treatments, which could be explained by the security they feel through direct contact with the hospital. Despite the new responsibilities that caregivers assume, they do not generally report additional stress (Leff et al. 2008). This may be because HaH allows their everyday life to continue with only minor disruptions, enabling them to maintain a sense of normalcy within familiar home settings for both themselves and their loved one. Variations in how caregivers perceive the stress of HaH reflect individual differences in their capacity to manage these responsibilities.

Although some relatives experience emotional stress, our study also reports the benefits of cohabitation, where relatives have more time with their loved ones in peaceful surroundings that better fit their daily lives. They also appreciate the reduced need to travel to the hospital, which further minimises disruptions in their daily routine. This aligns with several studies in a meta‐synthesis (Chua et al. 2022a) which found that relatives have higher satisfaction with HaH compared to traditional hospital treatment. HaH offers a more personal and comfortable hospitalisation experience, contributing to a sense of normalcy in daily routines and allowing families to remain closer together (Chua et al. 2022a).

Furthermore, our results show that relatives feel safe in the interaction they develop with nurses under HaH. Relatives perceive nurses as competent, and their relationship is strengthened through everyday conversations and the nurses' willingness to listen and understand their situation. Wang et al. find that the unhurried pace of the nurses in HaH, without signalling urgency, is valued by patients with COPD (Wang et al. 2012). This contributes to the feeling that nurses have time for meaningful conversations without distractions, unlike in hospital settings (Wang et al. 2012). This is also in line with findings from Chua et al. (Chua et al. 2022a), who found that relatives have a sense of a more personal and individualised relationship with nurses under HaH. Competent staff play a crucial role in creating a sense of security during hospitalisation when patients feel well cared for (Enheden for Brugerundersøgelse 2010). While these studies (Enheden for Brugerundersøgelse 2010; Wang et al. 2012) focus on the patient perspective, they can shed light on and contribute insight on how and why relatives find peace of mind and a sense of security when nurses appear competent and have the time and presence to provide the necessary care. This seems to be a contributing factor to the success of HaH services. Despite the benefits caregivers see in helping their loved ones under HaH, our study also reveals that they may feel pressured to conform to societal expectations. Some caregivers perceive that the hospital is reserved for the most critically ill patients, leading them to feel that their loved one is not ‘sick enough’ for traditional hospital care. This perception likely adds pressure on caregivers to set aside their own needs in the face of political goals and healthcare system constraints, such as a reduction in hospital beds and an increasing number of patients being treated under HaH (Chua et al. 2022a; Danish Government 2022; Lindberg 2020; Varney et al. 2014). For caregivers who already feel vulnerable, this societal development can intensify the expectation that they assume the caregiving role. According to Stie et al. (2020), this can lead to caregivers bearing significant responsibility for the patient, often independent of their own needs, desires or resources. Caregivers are expected to be capable of monitoring and observing the patient, placing the patient's needs above their own (Stie et al. 2020). Neglecting the caregiver's needs and vulnerabilities can lead to stress, insecurity and hopelessness, potentially causing the caregiver to become ill themselves. This transformation can turn them from a resource for the patient into a burden on the healthcare system (Stie et al. 2020).

In our study we find that caregivers are not involved in the decision‐making process regarding the implementation of HaH. The decision is made at the hospital with the patient, a finding supported by other studies (Chua et al. 2022a, 2022b; Karlsen et al. 2023). While none of the caregivers in our study opposed the HaH treatment option, those already strained by personal resources or caring for a functionally impaired patient expressed a desire for greater involvement in the decision‐making process. A meta‐synthesis (Chua et al. 2022a) emphasises the need to establish a partnership between caregivers and healthcare professionals to ensure caregivers are supported throughout the process. When caregivers' preferences are considered, it tends to result in higher satisfaction (Chua et al. 2022a).

5.1. Clinical Implications

As healthcare systems continue to evolve, HaH models are expected to play an increasingly significant role, making it essential to further develop this concept to benefit all stakeholders. Co‐residing relatives play a crucial role in HaH, and their early inclusion in the care process is fundamental to a successful treatment trajectory. A more individualised approach could help reduce stress among relatives, who often feel overwhelmed by societal and familial expectations, particularly in contexts where HaH is perceived as a necessity rather than a genuine choice (Chua et al. 2022a; Danish Government 2022; Lindberg 2020; Weber et al. 2023).

Despite well‐documented benefits of family involvement in patient care, HaH implementation often lacks a systematic and structured approach to engaging relatives. In Denmark, the involvement of relatives is a political priority, but it is not yet legally mandated. In contrast, in Norway, relative involvement is legally required under the Patient and User Rights Act, obliging healthcare providers to actively include relatives in decision‐making (Helsedirektoratet 2024). This legal framework suggests that policy‐level initiatives may be instrumental in ensuring that relatives are recognised as integral stakeholders in HaH, rather than merely being perceived as an auxiliary resource in a strained healthcare system.

Nurses play a key role in facilitating meaningful involvement of relatives, as they are often the primary point of contact for families. Research has demonstrated that patient‐ and family‐centred care interventions improve treatment outcomes, enhance patient satisfaction and increase safety (Chua et al. 2022a; Enheden for Brugerundersøgelse 2010; Wang et al. 2012). However, the inclusion of relatives remains complex and is influenced by multiple barriers and facilitators. Weber et al. (2023) emphasise that nurses should develop structured guidelines and support tools to ensure clear communication, patient and caregiver education and emotional support. Well‐informed relatives experience greater confidence and reduced stress, which in turn mitigates caregiving‐related strain.

Results from our study also highlight that relatives frequently assume caregiving responsibilities without being formally included in the initial HaH decision‐making process, which may contribute to emotional distress and uncertainty. To create a more sustainable HaH model, it is crucial for healthcare professionals to actively involve relatives in decision‐making and acknowledge their resources, concerns and limitations.

Clear communication regarding roles, responsibilities and available support is essential in reducing caregiver burden and preventing unnecessary stress that may negatively impact their own well‐being. By prioritising a structured approach to relative involvement, strengthening the role of nurses in caregiver engagement and establishing supportive policy frameworks, HaH can be further developed as a sustainable and ethically sound care model—one that not only improves patient outcomes but also safeguards the well‐being of those providing informal care.

Future research should focus on identifying vulnerable relatives at the initiation of HaH, enabling healthcare professionals to provide targeted support that accommodates the diverse needs of caregivers. Such efforts could contribute to preventing caregiver fatigue and promoting a fairer distribution of care responsibilities, ensuring that HaH remains a positive and secure treatment model for all involved.

5.2. Strengths and Limitations

The aim of this study was to gain an in‐depth understanding of relatives' experiences rather than to achieve statistical generalisability. According to qualitative research literature (Guest et al. 2006; Malterud et al. 2016), data quality depends on how rich the data are in information and is therefore not necessarily dependent on the number of participants (Malterud et al. 2016). Depending on the complexity of the study, data saturation is often reached with 6–12 participants (Guest et al. 2006). In this study, 10 participants were considered sufficient to generate rich data, as recurring themes emerged during the analysis, indicating saturation. New interviews would likely not have added significant new knowledge. Furthermore, reliability was ensured through continuous reflexivity in the analytical process.

A strength of this study is that it provides an in‐depth qualitative insight into the experiences of relatives in connection with HaH, a topic where existing knowledge is limited and increasingly necessary. Although this is a strength, we acknowledge that it' is a limited sample size within a specific context, which naturally means that the transferability of the results should be interpreted with caution. However, we obtained comprehensive descriptions from the selected population, including both male and female relatives, as well as those who were entirely new to the caregiving role and those who due to their relative's illness, already had prior experience with HaH and home care. This diversity strengthens the study by allowing for a broader exploration of relatives' experiences of HaH from multiple perspectives.

6. Conclusions

Being a cohabiting relative when HaH is introduced into the home environment presents a complex dilemma. The balance between caring for a loved one and the implicit expectations placed upon relatives by the healthcare system and political objectives constitutes a challenging compromise. Relatives find themselves in a liminal space between the willingness to have their loved one at home, if deemed safe, and the disruption of their daily lives, which shift from the familiar to the unknown. This compromise imposes a caregiving responsibility on relatives during HaH that they are reluctant to relinquish. Despite the dilemmas HaH may present, relatives perceive the benefits as outweighing the challenges, leading them to consistently prefer HaH over conventional hospital admission. They observe positive effects on their loved one's physical and mental health, while also being able to monitor their progress. At the same time, they experience personal benefits and quickly adapt to the presence of HaH in their home. The daily routine continues with minimal disruption, allowing them to maintain their usual activities, as opposed to the stress associated with a conventional hospital stay. The connection to the hospital provides a sense of security, and the presence of competent nurses, who must possess expert knowledge, is crucial. The relatives do not feel burdened with responsibility for medical treatment, and they remain unconcerned while the treatment is ongoing, as the illnesses requiring care are not perceived as life‐threatening.

However, as cohabiting relatives increasingly take on caregiving responsibilities, it is essential that HaH programmes adopt a more individualised approach to ensure their resources and capacities are adequately supported. Future research should focus on developing structured screening tools to help healthcare professionals identify relatives who may require additional support and to establish targeted interventions that enhance their experience of HaH.

Author Contributions

All authors meet the authorship criteria. All authors have made contributions to the manuscript, study design, methodology and revising. All authors approved the final version of the manuscript.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

Research data are not shared.