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Integrated care in German mental health services as benefit for relatives – a qualitative study
© Valentini et al. 2016
Received: 15 September 2015
Accepted: 22 February 2016
Published: 27 February 2016
As mental health services undergo the process of deinstitutionalization, this is resulting in a higher burden of care for relatives. Evidence suggests that interventions for carers have a beneficial impact on their psychological health. A reduction of responsibility for relatives is linked with a significantly improved outcome for the severely mentally ill. The aim of the study was to explore the relatives’ experiences with severely mentally ill patients in different integrated care service providers.
Semi-structured focus groups and interviews were conducted with 24 relatives of patients receiving community based integrated care for severe mental illness. The collected data was transcribed and evaluated using qualitative content analysis. A deductive-inductive approach was used in generating thematic categories.
Four main categories were found related to the structural aspects of the integrated care services and for the experiences of the relatives within these services. Relatives reported that the services offered significant relief and substantial support in daily life. In addition, relatives felt a reduced burden of carer responsibility and therefore that they were provided with more protection and stability. This resulted in a sense of encouragement and not feeling left alone to face challenges.
Relatives are a critical resource for patients suffering from mental health problems and benefit from formal structures and interventions to support them in carer role. An important need is to ensure continuity of care for patients and the bridging of gaps concerning information and support needs for relatives when providing integrated mental health services in the community.
The treatment of severe mental illness is in the process of deinstitutionalization, which is resulting in a higher burden of care for relatives [1, 2]. In addition, it is critical to ensure that a sufficient care and oversight is provided to ensure safe treatment of the severely mentally ill in community settings . Due to the additional burden of care, relatives may neglect their own needs, which in turn have a negative impact on their own mental health.
Several reviews have shown that carer-based interventions have a beneficial impact on relatives by enhancing their psychological health which leads to a reduction in the burden of care [4–7]. A reduction of responsibility for relatives is associated with a significantly improved outcome for severely mentally ill . Various studies recommend that interventions focused on supporting relatives in their caring role should be integrated in mental health services [9, 10].
For more than three decades, international evidence has been building, which shows that the treatment and care of mentally ill persons in a community care setting results in better outcomes [8, 11]. Models such as integrated care (IC) and assertive community treatment (ACT) are examples of best practice community care in the treatment of mental disorders [12–14].
IC is a funding model to facilitate the provision of mental health services for patients in community settings. The IC model for severely mentally ill persons is also gaining in importance in Germany [15–17]. In 2009, one of the largest national statutory health insurance company the “Techniker Krankenkasse” (TK) introduced an IC model called “NetzWerk psychische Gesundheit” (NWpG) and it has been implemented by several mental health service providers across Germany. The structural components of the service providers included home treatment, 24-h accessibility, case management as well as a crisis intervention apartment to avoid hospitalization and finally information supply. In addition, relational therapists are integrated into the health professional team and differ from the other staff as they are the individual contact person for each specific patient. This is with the intent to establish continuity in the therapeutic relationship. Beside these core structural elements, service providers freely determine the form of cooperation with other services and the manner of organization within their service [18, 19].
Some qualitative studies focused on the role of relatives caring for patients with severe mental health problems [20–23]. They found that relatives experience a strong and demanding responsibility which has a far reaching influence in carers’ daily life. Physical, emotional, social and financial aspects are often affected and to a great extend needs of relatives are not satisfactory coped by the current mental health system. Therefore, community based care have a key role in supporting the relatives and is internationally becoming increasingly important. Some publications showed that carer-based interventions have a positive impact on relatives and reduce their sense of burden. This may lead to improved outcomes for patients with severe mental illness [9, 24–27].
The aim of the current study was to investigate the experiences of relatives caring for severely mentally ill patients in the NWpG. An understanding of these experiences would enable the identification of fundamental needs and requirements of relatives, in order to improve quality of care for the family constellation when impacted by severe mental illness. Results may not only apply to the German health care system but may be transferred on different mental health delivery systems [1, 4, 28].
The present study was designed as a qualitative study. Focus groups and additional interviews were performed based on best practice guidelines for qualitative studies . Individual interviews took place with those participants who could not or who preferred to take part in the focus group interviews. This was not pre-planned as an additional source of data collection, and the analysis did not seek to compare (i.e., triangulate) the findings of the focus group and individual interviews but instead analyzed them as a combined data set. The qualitative study design was chosen to allow an intensive analysis of subjective motives, attitudes and needs of participants. Qualitative methods can supply a greater depth of information about particular research questions and permit the generation of hypotheses for further research with quantitative methods. Semi- standardized, guideline-based focus groups were carried out with a convenience sample of patient’s relatives. The interaction between the participants in a group context allowed for synergistic gains in that critical examination of the opinions and statements expressed during the discussion could be further drawn out by the interviewer. This leads to a deep and broad insight into the examined topics, which was more detailed than only the opinion of individuals via one-on-one interviews .
Sample data and recruitment
Characteristics of the selected service provider sites
Service provider site
Number of patientsa
Proportion of NWpG patientsa
Proportion of Home treatment utilizationa
Overview of the conducted focus groups and interviews
Service provider site
Number of participants (n = 24)
Data collection and analysis
An interview guide for the focus groups was developed by an interprofessional team of physicians and sociologists in consultation with representatives from the participating service providers. The interview guide focused on questions related to the experiences of the relatives.
Preparation and planning of focus groups was conducted between May and July 2014, data collection was carried out from July to November 2014. Focus groups took place in the rooms made available for the purpose by each of the participating service providers. The duration was approximately 100 min. All focus groups and interviews were moderated by the same author (DR) in order to provide a continuous and comparable interview style. In some groups, an additional member of the researcher team was present (KG).
The focus groups were digitally recorded (audio and video), phone-interviews used only digital audio recording. The collected data were transcribed in full text and anonymized. The transcripts were consequently subjected to qualitative content analysis . The software used to support the data analysis was Atlas.ti 7.0.
The decision for using this method of analysis depends not only on the published study protocol  but also it is a well-known approach in health care science and often used for interpreting text material. The structured approach of content analysis allows a descriptive view to the experiences of relatives within this kind of care for their patients.
For data analysis the conventional approach to content analysis was chosen . In detail the researchers used a deductive-inductive approach in generating thematic categories. Based on the interview guide, a provisional category system was created initially consisting of attitudes to structural aspects of care such as home treatment and 24-h accessibility and their own experience within the NWpG (deductive approach). This was adapted in the course of the analysis according to the content of the transcripts and was supplemented by emerging new categories (inductive approach) .
Transcripts were first coded independently into categories and sub-categories by three different researchers (DR, KG, JV) and then discussed intensively in consensus meetings until agreement was found. However, no inter-rater reliability was determined. Quotations were used to illustrate each of the categories . The same approach to analysis was carried out for both the interviews and the focus groups. Together with a detailed documentation of the research process, the quality principle of intersubjectivity and transparency was achieved . Further quality criteria used were the reflected subjectivity of the researcher and the empirical anchoring of theories developed within the textual data .
Ethical approval for this research study was obtained from the ethics committee of the Medical Faculty of the University of Heidelberg in November 2013 (Approval No. S-540/2013). No additional data were evaluated.
Structural components – main and sub-categories
Insight in home environment
Crisis intervention apartment
The two key categories discussed in the present study are the structural aspects of the service providers and the experiences of relatives with the NWpG. Main categories are divided into different sub-categories.
The structures and facilities offered by all service providers, namely home treatment, 24-h accessibility, case management, relational therapist and crisis intervention apartment are summarized as structural aspects. Table 3 shows the main categories and sub-categories of the structural components common to all participating service providers within the NWpG. Citations will be presented within the text.
“I saw my husband, he feels much safer and is more open. They tell much more, because the home environment is different than if you are sitting here.” (FG12_R6)
A high number of participants mentioned the importance of meetings at home, which led to a more relaxed atmosphere between therapist, patient and relative.
“…that there is someone that comes home. This is a reassurance, I think.” (FG11_R6)
“Home visits indeed played a major role especially in a crisis - were always great, were always a good support.” (FG13_R3)
Insight in home environment
Appointments in the patient’s home allowed an insight into their private life which might reveal indications for treatment and result in an information gain by the relational therapist. Relatives mentioned that this aspect was lost if the meetings were just held at the facilities of the service providers.
“…if then really also the private environment is involved and the relational therapist knows how they live…that’s again a piece of the puzzle to perhaps be able to better help with…or to be able to support.” (FG11_R7)
“But for me somehow I would not feel so comfortable or rather for me, my home or our home is a place where I relax.” (FG11_R4)
“…and it will also be asked regularly how you feel. And there are also appointments…so not just if it is acute, but from time to time in between…for comparison.” (FG11_R3)
“To me it is an enormous safety, I have a phone number, so that I could call anytime when I feel overwhelmed, as a catharsis and also if I cannot carry on anymore.” (FG12_R6)
“There is always someone there and I think that’s a comforting feeling also for my father…not only for us.” (FG12_R1)
“That…before I had to call the police, I can call someone else who still might be able to fix it as a professional.” (FG11_R3)
“We had one or two times the case that an attack occurred very suddenly…a phone call was sufficient and an hour later support was here. That gave me as a relative a lot of safety and stability.” (FG13_R3)
“…one naturally feels then much safer, and of course relieved, it’s not all on oneself and above all, if you experience any problems there is now the possibility for me: I ’ll call the service provider staff, they should solve this. Yes, wonderful.” (FG13_R7)
“…and then there is always a bit of difficulty with the continuity [of the relational therapist]…there will always be fluctuations …but as far as it goes someone should be very careful and make sure that there are not constantly new ones, so that they are not constantly changing.” (FG13_R7)
“…and when there was a representative, then they were informed, competent, so they knew…and that is the most important thing that you can rely on them.” (FG12_R5)
“…and a lot of personality. Such a personal contact and that as well…yes such a confidentiality was established between [relational therapist] and my husband. Without this fundamental trust he would not open himself. No way…so…and given the fact that there is this good basis of trust…and you have to establish this first…to someone.” (FG12_R6)
“I can only agree regarding the support, therefore if he has any problems, he can go to them and does not need to discuss this with me necessarily, because they know him and can assess him very well…and that relieves one of course.” (FG13_R6)
The expertise and the professional knowledge were mentioned several times by relatives. This was described as a very important factor for establishing a sense of safety and relief because it filled the relative’s gap in knowledge. The service provider’s know-how was reported to result in a knowledge gain for the relatives, which could lead to new perspectives and an improved ability for the relatives to deal with family members with mental illness.
“This trained, good person who knows what he is talking, which we cannot do anymore as an affected person, because we are unable to cope…too many emotions…and I think that is what the service provider brings: time, confidence, and truly with an abundance of professional knowledge.” (FG12_R5)
Need for information
“This is now quite interesting that I do not know exactly how this…what this service is.” (I 5_R1)
“The care itself relies thank god on the patients, we have found it different in other organizations…without being asked what you actually want, how can I help you…and this is completely different here.” (FG13_R3)
The sub-categories concerning experiences of relatives with care of their family members with mental health problems are relief, support, hand over responsibility, and protection and stability. These four sub-categories will be reported here:
“The first few days within the service provider were simply, they were just redemption, they were wonderful, it was immediately taken up, they took care of her…she was simply treated humanely.” (FG13_R3)
“It’s as said the support. The support to know: There is someone…for him…for him, by whom I’m learning, too.” (FG12_R5)
Hand over responsibility
“Between the therapist and the service providers there is also a strong connection so far…yes, a good, I do not know what to call it, a good…ring around him, where I think to myself: Okay, I can leave him there.” (FG13_R1)
Protection and stability
“I am also of the opinion that actually the diseases are eventually contagious…so, if the partner has somehow certain restlessness or whatever, than that’s somehow contagious now…but for me there is also a certain potential of contagion somehow…[Sounds of agreement from round the group]” (FG13_R5)
“To have the feeling of not having to stand alone as a relative.” (FG11_A5)
The purpose of the study was to explore relatives’ experiences within integrated care services for patients with severe mental illness.
The main findings of our study showed that the structural elements such as home-treatment, relational therapist and a 24-h telephone hotline to the mental health care team were valued by relatives of patients with severe mental illness. These structural aspects led to a significant sense of relief for relatives and provided a substantial support in daily life. As a result, an increased feeling of safety and support for relatives was reported as well as a sense of encouragement in not being left alone to deal with a challenging situation.
As illustrated in our main findings, the relational therapist was one of the key-features in reducing carer burden. A well-established long-term connection between therapist and patient through regular contact built an effective therapeutic relationship, which had flow on benefits for relatives in terms of support, information sharing and reduction of responsibility. Similar results have been shown in other studies [35–39].
Therefore, changes in the continuity of care from the relational therapist could present a big challenge for patients and their relatives. This fluctuation cannot be completely prevented and attention should be paid to the organization and planning of such changes in order to minimize stress for patients. This would be even more important when patients experience acute episodes of mental illness because they have fewer resources than when they are stable. An important focus for service providers should be which strategies can be taken to reduce the inconstancy in relational therapist. Some service providers implemented a “tandem-concept” for the relational therapist so that the meetings were always attended simultaneously meaning they could always cover each other, and this continuity was accepted well by both patients and relatives. It could be assumed that personal sympathy may also affect the dynamic o the relational therapist; and that the “tandem concept” could also balance out differences.
It was observed that a consultation with patients and relatives with regard to pending changes resulted in better acceptance of fluctuation in relational therapist and in a lower perceived burden for both patients and relatives.
The results of our qualitative study identified that information provided by the integrated care services was very heterogeneous and not sufficient and satisfactory for most relatives. This lack of information led to an uncertainty about the provided services, which would be crucial for the decision as to whether to participate in such a service.
Additionally, a lack of adequate medical knowledge was described by relatives, which increased the sense of insecurity and perception of high burden of care . Some service providers offered self-help groups for relatives, which were well accepted. Sufficient education for relatives may not only bring advantages for the relative, but may increase the quality of care provided by the relatives [10, 41].
There is much uncertainty regarding the utilization of the services by the relatives for personal questions. Moreover, it was not clear if relatives would access to the integrated care services as they are “just” relatives and not registered in the service provider as are the patients’ they have to care for. In this point further information for relatives is needed.
It is also up for debate whether service providers should address directly to the relatives for recruitment or concerns regarding the patients. The question if and to what extent relatives should be involved in treatment is a point of tension between the autonomy and freedom of choice of the patient and the decision-making ability of patients with a severe mental illness. This should be an important topic for further studies.
Relatives caring for patients with mental health problems may carry a significant risk of being adversely affected in their own psychological health. Previous studies have indicated that effective treatment strategies should address all affected family members caring for patients with chronic and mental illness [42, 43].
Strengths and weaknesses
The findings of the current study must be viewed under the specific quality criteria for qualitative research. Some limitations have to be considered when interpreting the results. The study was undertaken in five regions of Germany and only included relatives who were interested in taking part in this study, which may have resulted in selection bias of superior motivation within our sample. As usual in qualitative studies, the sample is not intended to achieve representativeness. Moreover, no inter-rater reliability was analyzed to examine the reliability of coding between the three researchers (DR, KG, JV). However, the data supports the importance of integrated care for mental health services in the community setting and contributes to the development of hypotheses for further quantitative research. In addition, lack of specificity of people with different severe mental health problems may bring different needs and burden for the relatives. Representative studies should be used to distinguish the actual needs. Furthermore, we collected no information about the financial situation of relatives. Therefore, a selection bias concerning the 50 Euro reimbursement could not be excluded. Additionally, there is a risk that relatives may have felt under pressure to participate when approached by the organization caring for their relative. However, several relatives mentioned in the focus groups and interviews that they had a high intrinsic motivation to participate. Lastly, an observer bias cannot be ruled out during performing the interviews as well interpreting of data. However, we minimized the observer bias with different strategies as follows: the moderator of interviews (DR) was not completely invited in the aim of the study; open questions were asked during the interviews and focus groups, and the analysis of data was performed by two of three researchers (KG, JV) who were mainly not involved in conducting the study. The results of this qualitative study are not generalizable but are important for the generation of ideas and hypotheses as it is the purpose of qualitative research in general.
Relatives are an important resource for patients with mental health problems. It can be concluded that relatives also benefit from the services which are offered to patients in integrated care models. These services providers contribute to well-being of relatives reducing burden of care and improve the feeling of safety and security. Moreover, an important need is to ensure a continuity of care for patients and to bridge the gap concerning information needs for relatives. To increase the involvement of relatives in care of mentally ill patients, information about existing mental health services using an integrated care model and their structures should be optimized.
The study is funded by the German Federal Ministry of Health, grant number: IIA5 - 2513FSB013. We would like to thank all participants of the focus groups and interviews for their contributions and their enriching insight into this topic. Our acknowledgement goes equally to the service providers for the recruitment of relatives and for their support. We also gratefully thank Native Speaker Sarah Berger for reviewing this manuscript.
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