This article reports on the qualitative component of a larger project examining the effectiveness, costs, and implementation of intensive HT in Germany (“AKtiV study”) [20, 21]. Previous results from the overall study have been published elsewhere [22–28]. A sequential approach was used, with iterative switching between different methods of data collection and analysis [29]. First, the experiences of carers with HT were collected through qualitative interviews. In order to obtain more context-related data, the ethnographic method of participant diaries was used after initial evaluation [30, 31]. Subsequently, focus groups were conducted to address remaining knowledge gaps and to validate the findings [32]. Finally, a stakeholder consultation was conducted to plausibilize the findings, contextualize the results, and derive implications for practice and health policy [33]. The aim of the multi-method approach was to gain as rich and ecologically valid insights as possible. The data analysis was carried out according to the constructivist grounded theory paradigm according to Kathy Charmaz [34]. The Ethics Committee of the Brandenburg Medical School (No. E-02-20200715) and the ethics committees of the participating study sites approved the study. The Consolidated Criteria for REporting Qualitative Research (COREQ) checklist was used to guide manuscript preparation [35] (see supplemental file 1).

Data analysis began concurrently with the interview phase. It was progressively extended to include all other data which was generated using the different methods of data collection. A coding framework was developed based on the collected material; key concepts and patterns were identified through grounded theory methodology [34]. The analysis was supported by the use of MAXQDA software (VERBI GmbH, Berlin, Germany). The research team (EK, MS, JS) first conducted a thorough reading of each data set, wrote analytic memos, and engaged in a multi-step coding process. Coding followed three stages: (1) initial coding, (2) focused coding, and (3) theoretical coding [34]. Throughout the analysis, the research team met regularly to explore relationships between categories and to stimulate collective analytical thinking.

Following the completion of data analysis, the findings were presented in December 2023 to two representatives of the German national advocacy organization for carers of people with mental health conditions. The aim of this event was to contextualize the results from the perspective of carers and to generate input for the interpretation of findings in this publication - particularly with regard to implications for practice and health policy [33].

Table 1 summarizes the sociodemographic characteristics of the study participants. Age was relatively evenly distributed across the categories from 25 to over 65 years. Gender was balanced between women and men. Most participants were highly educated, had completed vocational training, and were financially independent. The majority identified as white, of German background, and resided in metropolitan areas. More than half of the participants were partners or spouses of the service user (n = 15; 55.6%), and nearly three-quarters lived in the same household (n = 20; 74.1%), most commonly only with the service user (n = 12; 44.4%). Seven carers (25.9%) lived in separate households. Most carers reported daily contact with the service user (n = 23; 85.2%) and were present during treatment visits two to three times per week (n = 14; 51.9%). The vast majority had educated themselves about the service user’s mental health condition (n = 24; 88.9%). In contrast, only about one-third of the carers had personal experience with psychiatric or psychotherapeutic treatment (n = 9; 33.3%), and just one carer participated in a self-help group for caregivers (n = 1; 3.7%).

Even during an ongoing HT episode, carers provided diverse forms of support, often directly related to the treatment process. One frequently described contribution was helping to absorb the considerable need for conversation that service users expressed after treatment appointments. Caregivers supported the processing, reflection, and emotional containment of topics that had been opened during therapeutic encounters. On the one hand, this allowed caregivers to emotionally synchronize more closely with the service user and to gain deeper insight into the treatment. On the other hand, the opportunity to provide support in this way was often described as personally rewarding:

These conversations created space for service users to reflect on and talk about their HT experiences. In some cases, carers also had to absorb emotional crises that had been triggered by interactions with HT staff:

Caregivers reported that they were able to provide crucial information during family or network meetings that contributed to the treatment process:

This may be especially important when cultural differences pose a challenge to communication. One service user had certain religious beliefs that stemmed from his upbringing in a different country, which could be misinterpreted as part of an ongoing psychosis. His friend and landlord was able to relate this to the psychologist:

By sharing their perspective during treatment conversations, carers contributed to a deeper clinical understanding of how the mental health crisis developed. This seemed helpful for HT staff and sometimes for the service user:

In one case, a relative served as a literal translator due to a language barrier between the HT team and the service user:

Because caregivers and service users often shared the same household, participants frequently raised the question of where treatment should take place. In this context, carers actively contributed to creating a treatment environment by withdrawing during HT visits and ensuring a quiet atmosphere in the home while care was being provided. In some cases, carers even offered their own home as the location for HT, despite not living with the person in treatment, thereby enabling HT to take place in the first place:

In rare cases, the provision of space also created strain for caregivers - particularly when rooms that were usually shared became unavailable due to treatment, or when space in general was limited:

The interviewed caregivers almost always described assuming everyday household tasks as part of their role, particularly during phases of acute illness and throughout the HT episode. One frequently mentioned responsibility was providing care for other family members in need of support, such as young children or elderly relatives. This form of care was implicitly or even explicitly expected by both the HT team and the service user. Several caregivers did not express concerns about taking on these additional responsibilities. However, they noted that the COVID-19 pandemic–and the associated shift to remote work–made this level of involvement possible in the first place. Without the ability to work from home, the increased demands of childcare might not have been manageable:

Some carers expressed frustration with these expectations, noting that the treatment period left them completely occupied:

In addition to care responsibilities, caregivers often took on practical household tasks such as cleaning or grocery shopping. Daily cleaning, in particular, was perceived by some as more burdensome than usual due to the regular presence of staff in the home:

Regardless of the actual level of involvement, unclear communication from HT staff about the expected role of carers often led to confusion and uncertainty. Carers sometimes did not know how they should behave, whether they should take an active role, or when to step back:

Some linked this uncertainty to a lack of initiative from the team:

Some caretakers also noted that certain expectations seemed to be in place without being explicitly stated:

Many expressed a desire for more direct communication and a structured approach to collaboration. Joint meetings involving the team, the service user, and caretakers at the start of HT were considered a way to clarify mutual expectations:

Some carers expressed a need for greater support in their caregiving role. They wished that HT team staff would proactively reach out to them, offer emotional support, and provide space to address their own concerns. Several emphasized the importance of feeling acknowledged–both in their role within the social network of the service user and as individuals–which, in their view, did not always happen:

When carers did feel that their support was acknowledged by HT team staff, they often described this recognition as encouraging and strengthening:

Some caregivers said they would have felt better supported if they had received more information about available self-help resources:

Others, however, did not want therapeutic support for themselves from the HT team, stating that they benefited most when the service user’s condition improved:

Caregivers described situations in which they reached–or even exceeded–their limits during HT and no longer knew how to support the service user:

Others reached their limits due to the cumulative demands of everyday responsibilities combined with caring for the service user during treatment:

Not all caregivers felt heard when they communicated these limits to the HT team. In some cases, the carer’s overload even led to the discontinuation of HT and the service user’s transfer to inpatient care:

The variety of functions assumed by carers in this study aligns closely with prior research on their roles in mental health care across settings [40]. These included initiating treatment in acute crises, providing organizational and emotional support, sustaining daily routines, and facilitating communication between service users and professionals. Some carers acted primarily as the patient’s personal coordinator, managing schedules and ensuring household stability. Others assumed the role of emotional anchors, providing continuous reassurance and containment between professional visits. Another group could be described as interpreters or advocates, translating the service user’s needs and perspectives to clinicians and, in some cases, negotiating cultural or linguistic differences. In contrast to inpatient contexts - where carers have often been described as occupying a peripheral position within a system dominated by institutional routines and professional control - our findings suggest that HT inherently places carers in a more central position [40]. Nevertheless, although they provided the framework for treatment, caregivers often felt insufficiently acknowledged and perceived themselves as “invisible,” much like in the inpatient setting [41]. This is partly due to the treatment being delivered within the home environment, where caregivers naturally hold logistical and emotional influence over the care process. Similar to the “gatekeeper” and “proxy” roles described in hospital-based psychiatric care [42], relatives in HT often acted as decision-makers during crises and as consistent providers of support over extended periods. This continuity, rarely possible in hospital settings, may strengthen the therapeutic alliance but also introduces unique demands on relatives. The bridging function carers perform - mediating between clinical teams and service users - has been recognised in other mental health settings [43, 44] and appears particularly relevant in HT, where effective collaboration hinges on the seamless integration of clinical and caregiver efforts.

A central finding of this study is the prevalence of unclear and inconsistently communicated role expectations for carers. Many participants reported uncertainty about their position in the treatment process, including when their active involvement was desired, what responsibilities they were expected to assume, and where the limits of their role lay [45]. This lack of clarity was compounded by the absence of formalised role discussions at treatment initiation, leaving caregivers to infer expectations from indirect cues or their own assumptions. Such ambiguity is not unique to HT; similar patterns have been described in inpatient and community mental health settings [17, 41], where role uncertainty can contribute to relational strain and reduce the effectiveness of collaboration. Without explicit negotiation of roles, carers may oscillate between overstepping and withdrawing, both of which can hinder therapeutic progress. The problem is further compounded when different stakeholders - service users, caregivers, and clinicians - hold divergent expectations. Structured, early-stage conversations to align these perspectives, coupled with ongoing communication throughout treatment, could help to establish a shared understanding and adapt roles as circumstances evolve.

The study also highlights the significant and often cumulative burden experienced by carers during HT. Balancing the emotional demands of supporting a person in an acute psychiatric crisis with the practical requirements of household management, employment, and other caregiving responsibilities placed many participants under sustained strain.These pressures were magnified in situations where professional support was perceived as insufficient or delayed, reinforcing the sense of being “left alone” with complex care tasks. This aligns with the broader literature on caregiver strain, which has linked such overload to increased risk of mental health problems, relationship difficulties, and reduced caregiving capacity [7, 8]. In the context of HT, the intensity and immediacy of home-based care can blur the boundaries between family life and clinical intervention, making it more difficult for caregivers to disengage and recover from the emotional demands of the role. Caregivers in our study often struggled to distinguish their own experiences from those of the service user, frequently framing their narratives around the latter’s well-being and difficulties. This tendency appears to reflect an implicit, and sometimes unconscious, expectation from both professionals and service users that caregivers should subordinate their own needs in order to provide support [46]. Importantly, the findings suggest that overburden is not solely a function of the quantity of tasks undertaken, but also of the perceived absence of recognition, guidance, and emotional support from the treatment team. Caregiver strain appears to be alleviated not merely by reducing the number of tasks, but by fostering meaningful and well-informed involvement - for instance, delegating practical or medical responsibilities that counteract feelings of helplessness [47]. Notably, very few caregivers in this study had experience with self help groups: only one reported participation, while most were unaware such options even existed. Proactive support strategies that acknowledge caregivers both in their role and as individuals - such as regular check-ins, the provision of psychoeducation, and information on peer or respite services - could mitigate these risks while sustaining the positive aspects of carer involvement.

To our knowledge, this is the first qualitative study to explore the perspectives of carers on their role in acute psychiatric home treatment in Germany. The inclusion of a relatively large and diverse sample, drawn from multiple sites and using three different data collection formats, strengthens the robustness and transferability of the findings. The participatory elements of the study, involving both peers and representatives from the national family carers’ association, further enhance its relevance and credibility. Nevertheless, the qualitative design limits generalisability, and potential selection bias cannot be excluded, given that participation required a certain level of openness, language proficiency, and interest in the topic. Furthermore, interviews and analysis were conducted by the same researchers, which may have introduced observer bias, although iterative coding and group discussions during analysis helped to mitigate this risk. In addition, the study did not capture the perspectives of service users or HT staff, which represents an important limitation. However, this omission reflects the study’s explicit aim to investigate the carer perspective in depth.