The design and process of a family and community-based intervention for relapse prevention in people living with schizophrenia in Iran

Abstract

Background:

People living with schizophrenia (PLS) suffer frequent relapse accompanied by emergency room visits, premature mortality, lower quality of life and a substantial social and economic burden on families and health systems. There is a dearth of community-based relapse prevention interventions (RPIs) in Iran.

Aims:

To determine an ideal model for a community-based RPIs for PLS.

Methods:

A qualitative study with 27 experts in Iran was carried out to understand the ideal RPIs for PLS and the key components of such interventions.

Results:

In 16 semi-structured interviews and 8 group-discussions, the participants identified six major stages of family and community-based RPIs including preparation, social mobilization, local team formation, design an RPI, implementing the RPI, participatory monitoring, and evaluation of the RPI.

Conclusions:

Given the suboptimal healthcare systems and lack of professionals and services, PLS in Iran may benefit from family and community-based RPIs. Our findings warrant pilot testing of such initiatives across developing communities like Iran to improve health outcomes of PLS.

Keywords

Schizophrenia relapse prevention psychiatry interventions community-based

Introduction

According to a recent worldwide report (i.e. Global Burden of Disease), about 21 million people are living with schizophrenia globally, and this disorder contributes to 13.4 (95% UI: 9.9–16.7) million years lived with disabilities (YLDs) to the burden of disease globally, equivalent to 1.7% of total YLDs in 2016 (Charlson et al., 2018). The majority (>50%) of the people living with schizophrenia (PLS) have persistent or fluctuating symptoms even with adherence to treatment (Kovács et al., 2018; Lafeuille et al., 2013), and only 13.5% of PLS experience optimal clinical and social recovery (Jääskeläinen et al., 2013).

PLS experience relapse episodes throughout their lives, which are accompanied by exacerbation of symptoms, repeated visits to psychiatric emergency rooms, and eventually readmission in psychiatric facilities (Lafeuille et al., 2015; Zabihi Poursaadati et al., 2021). In various studies, the relapse rate in the first year of disease onset is estimated to be about 30% to 40% and the lifetime rate of relapse is estimated to be up to about 70% (Addington et al., 2013; Emsley et al., 2013; Porcelli et al., 2016). In other studies, the relapse rate has been estimated to be between 50% and 92% globally and is estimated to be 3.5% per month in those who are treated with depot antipsychotic medication (Csernansky & Schuchart, 2002; Moges et al., 2021; Weret & Mukherjee, 2014). Frequent relapse leads to worsening of the prognosis (Emsley et al., 2013), a complication of the psychosocial profile (Schennach et al., 2012), increased caregiver burden and burnout (Chi et al., 2016), decreased productivity of the PLS and their primary caregivers (Emsley et al., 2013; Porcelli et al., 2016), social exclusion (Millier et al., 2014), and increased financial burden on individuals and health systems (Pennington & McCrone, 2017). Therefore, prevention and reduction of relapse have always been one of the most important goals in the treatment and rehabilitation of PLS (Addington et al., 2013; Chi et al., 2016; Lafeuille et al., 2015; Porcelli et al., 2016; Zabihi Poursaadati et al., 2021).

To prevent and manage relapse, various interventions have been designed and their effectiveness has been studied, including biopharmaceutical therapies such as second-generation psychotic drugs (Aigbogun et al., 2018; Højlund et al., 2021), maintenance electroconvulsive therapy (Sanghani et al., 2018; Ward et al., 2018), psychological interventions such as acceptance and commitment therapy (Bach et al., 2013; Butler et al., 2016; Shawyer et al., 2017), cognitive-behavioral therapy (Burns et al., 2014; Rathod et al., 2010; Turkington et al., 2006), psychosocial education for the PLS and primary caregivers (Pitschel-Walz et al., 2001; Zabihi Poursaadati et al., 2021), case management models such as assertive community treatment (Bond et al., 2001) or intensive case management (Burns et al., 2007; Dieterich et al., 2017), and psychosocial rehabilitation (Lim et al., 2017; Rouse et al., 2017; Zabihi Poursaadati et al., 2021). In general, the approach of relapse prevention interventions (RPI) in high-income countries has emphasized five major domains: psychological education, family interventions, intensive case management, cognitive rehabilitation, and life skills training. But in low- and middle-income countries, community-based rehabilitation, psychological education, and family support (especially by non-specialists and informal caregivers) are recommended (Brooke-Sumner et al., 2015). Although some of the risk factors for relapses such as patient and caregiver attitudes, poor personal and communication skills, and access to care services have been considered in these interventions, these interventions are mainly individual and family-based, education-oriented, and expert-centered, which has increased costs for PLS, their families, and health systems (Naeem et al., 2016). In considering these burdens, one of the major reasons for the relapse of the disease is the discontinuation of treatment due to the high costs of the medication and medical services (Pennington & McCrone, 2017; Zabihi Poursaadati et al., 2021).

A sizeable proportion of PLS belong to low- and middle-income countries, coinciding with the highest treatment gaps of around 90% in most low- and middle-income countries (WHO World Mental Health Survey Consortium, 2004). The World Health Organization (WHO) has proposed community-based care plans (Khasnabis et al., 2010) and the use of trained volunteers (Keynejad et al., 2018; World Health Organization, 2008) to reduce the care gap. A recent meta-analysis found that the smaller the size of the support network, the greater the likelihood of relapse of symptoms, especially negative symptoms (Degnan et al., 2018). Utilizing the capacities of the community, the neighborhood environment, and the individual support network helps to form a network of local volunteers to care for the patient and prevent relapse, in addition to strengthening patient-family social relationships. Studies in India and other countries have evaluated the effectiveness of a community-based rehabilitation model for PLS in low resource settings and results show that such models are effective in reducing disability, psychotic symptoms, relapse and hospitalization, increased communication with treatment teams, and increasing adherence and persistence in treatment (Chatterjee et al., 2003, 2014). WHO, meanwhile, divides the responsibility for mental health screening, referral, management, and follow-up among non-specialist health workers and health professionals by providing a model of task-sharing or task-shifting. This model is the result of a participatory care model and includes educating important others in the individual support network (Rebello et al., 2014). This model is a way to strengthen and expand the providers in the health care sector by redistributing tasks between the health professionals and the lay health worker, which leads to an overall increase in the number of health care providers (Kazdin & Rabbitt, 2013). Various studies have examined the effectiveness of the task-shifting model intervention on various psychiatric disorders such as schizophrenia, anxiety, and depression (Abdulmalik et al., 2013; Balaji et al., 2012; Malakouti et al., 2009; Patel et al., 2010; Rahman et al., 2008). A key element of this model is the training of non-professionals for evaluation and intervention. In this study, using the opinion of experts, we provide a potential model for RPI in PLS that uses the capacity of the community, neighborhood environment, and support network for care and to also reduce the cost of care.

Methods

Study participants and procedures

We conducted a qualitative study with the content analysis method, employing individual in-depth semi-structured interviews, group discussions, and expert panel dialog to investigate the experience, perception, and opinion of mental health professionals about developing a community-based and cost-effective RPI. Participants were a variety of individuals employed at psychiatric hospitals, a medical university, private centers, and one NGO. By classification, these individuals were psychiatrists, nurses, social workers, community facilitators, or occupational therapists. Most of the participants were selected from a list of clinicians at three public universities and related hospitals in Tehran, Iran. These hospitals are the most important educational-therapeutic psychiatric centers in Iran. Also, due to the employment of some specialists in private and non-governmental organizations, experts from one of the NGOs in the field of schizophrenia as well as long-term care centers were invited for interviews. All the participants had at least 3 years of experience working with people with severe psychiatric disorders, research experience in the field, or relevant work experience in the community.

Eligible participants were given a full explanation of the study and its importance. They were also informed of the data collection procedures and study protocols. Participants who agreed to participate in the study were requested to complete the written informed consent form, and an arrangement for an interview with each participant was then made. Confidentiality and freedom to withdraw at any time during the study were ensured. Sampling was done to the point at which no new information was obtained from participants and redundancy was achieved (i.e. data saturation).

Data collection and analyses

The number of participants was determined based on saturation principles (n = 27). Data was collected through 16 Semi-Structured Interviews (SI) and two Group Discussions (GD) (n = 4 and n = 5) with experts. A trained social worker, with a decade of experience in psychiatric social work, conducted interviews. Each GD and SI incorporated several key questions such as ‘How are community-based interventions implemented to prevent relapse in PLS?’ and then the interview was guided by the participants’ answers with the additional questions such as ‘What are the principles of this intervention?’, and ‘What are the steps of this intervention?’ or open-ended statements beginning with general questions, gradually progressing to more specific ones. Probing was performed according to the reflections of participants, concerning their knowledge and experiences about relapse. GDs ranged in length from approximately 90 to 120 minutes and SIs took 45 to 60 minutes. The interviewer took notes during the SIs and GDs.

All GDs and SIs were recorded, transcribed verbatim, and analyzed based on a content analysis approach (Drisko & Maschi, 2016). Data analysis took place simultaneously to identify ideas and comments, which then guided the next interview. We conducted an initial analysis of each interview before the next GD or SI and if important issues emerged, we brought them up in the next interview. The research team carefully read the text to obtain an overall understanding of the full text for each GD and SI. Then we compared the interview transcriptions with the recorded files for accuracy. Subsequently, open coding was conducted and during this phase, all the texts were read several times, and phrases and keywords, and main facts in the text were noted. The data collection process was continued until saturation of each concept was reached and further data collection failed to contribute any new information. When the authors encountered data that did not fit an existing code, new codes were added. In the following steps, similar codes were grouped and placed into categories (Maarefvand et al., 2017; Zabihi Poursaadati et al., 2021).

After analyzing the data and extracting the main themes, the draft intervention was prepared and presented for review in a four-person group consisting of people who had participated in the previous stage. Also, e-mails were sent to nine people who had participated in the previous stage, so that the participants in this stage could give a score between 0 and 100 to each of the activities and stages of intervention mentioned in the draft (i.e. the goal is achievable; the explanations are clear; the method is convenient; an activity is essential; duration time is appropriate, and it can be run remotely). After applying the experts’ opinions, the final file of the protocol was prepared.

Trustworthiness

To describe trustworthiness, the concepts of credibility, dependability, and transferability were used. We employed several techniques to establish maximum trustworthiness of the data collection and analysis including constant comparison, member checks, and peer debriefing. Interviews were conducted until data saturation was achieved which provided deeper information about the phenomenon under study (Maarefvand et al., 2017; Zabihi Poursaadati et al., 2021). The authors returned to the data several times during the analysis to verify and develop categories (constant comparison). A summary of the primary results was discussed with some of the participants to check whether the results were per their experiences (member check) and the emergent codes and categories were discussed continuously between the lead author and the co-authors (peer-debriefing) (Drisko & Maschi, 2016).

Ethical considerations

The study was approved by the Ethics Committee of the University of Social Welfare and Rehabilitation Sciences, Tehran, Iran (case number: 1397.131). Participation in the research was confidential and voluntary. All participants were informed about the purpose of the research project and obtained written informed consent. The participants could withdraw from the study whenever they preferred. The participants’ agreement was obtained for recording the ISs and GDs. The research team confirmed that participants understood their rights by a member check.

Results

Forty-four experts were invited to interview and participate in the group discussion, of which 27 agreed (16 attended the individual interview and 9 participated in two groups of 4 and 5). The majority of participants were female (77.8%), Masters’ degree holders (40.8%), or Ph.D./Specialists (40.8%) degrees. The age of participants ranged from 25 and 65 years (mean: 40.14) and work experience of an average of 15.3 years (Table 1).

Table 1.

Demographic characteristics of the participants.

Variables	Formal caregivers
Variables	Frequency	Percent
Age
20–30	3	11.2%
31–40	8	29.6%
41–50	8	29.6%
51–60	4	14.8%
60<	4	14.8%
Gender
Male	6	22.2%
Female	21	77.8%
EDU
Bachelors	5	18.5%
Masters	11	40.8%
PhD/specialist	10	37%
Medical doctorate	1	3.7%
Job
Social worker	13	48.3%
Occupational therapist	3	11.2%
Psychiatrist	6	22.2%
Nurse	2	7.2%
Physician	1	3.7%
Physiologist	1	3.7%
Psychologist	1	3.7%
Work experience (years)
0–10	7	25.9%
11–20	11	40.8%
21–30	4	14.8%
30<	5	18.5%

After analyzing the content and classifying the data, six major and final themes were extracted which formed the stages of family and community-based RPI, including preparation, social mobilization, local team formation, design of an RPI, implementation of the RPI, participatory monitoring, and evaluation of the RPI (Figure 1).

Figure 1.

Diagram of family and community-based intervention stages of RPI.

Patient and family preparation

Participants in this study considered the first step in RPI to be preparing the patient and family for the intervention, including assessment and training. Therefore, it was deemed necessary to perform a psychosocial assessment of the patient and family members in the hospital or living environments and identify risk and protective factors affecting the relapse in the individual. What seems necessary in this process is to pay attention to the unique cultural sensitivities of the patient, family, and the living environment.

- Expert (female, social worker in hospital, 3 years of work experience): ‘The first step for effective intervention is to have a correct assessment of the current situation, we must examine the patient, family, and environment and see what factors in the family environment, what factors in interpersonal relationships, what factors in the living environment and what factors in the workplace cause relapse?. . . also the intervention that is being done must be very culturally sensitive to the culture of that family and neighborhood otherwise it will not be accepted at all. ’

In evaluation sessions, it is necessary to identify the key person and important others in the network of the PLS (e.g. relatives, friends, and neighbors of the patient and family). Formal support resources, including organizations and institutions with which the family interacts in the patient care process and receives the necessary support, also need to be identified.

- Expert (female, Ph.D. of occupational therapy in university hospital, 30 years of work experience): ‘Well, [in addition to clinical evaluation] we use home visit for psychosocial assessment, we examine how the relationship within the family is . . . Then we explore other aspects of their living environment, even Like the supermarket in the neighborhood that patient goes there to shop, sometimes this visit may be from the patient’s workplace . . . we need to search and find influential people in the patient’s life. It may be a friend, uncle, grandmother, employer, or peer, they can all help us’.

Participants believed that in the preparation phase, the patient and family should receive the necessary training on relapse and the nature of the disease, protective and risk factors, warning signs of relapse, and the importance of using the capacity of the support network and the neighborhood environment. They acknowledged that the training could be individual or group, face-to-face or online, depending on the circumstances.

- Expert (female, social worker in private psychiatric rehabilitation center, 12 years of work experience): ‘The family must be ready to accept the patient after discharge, that is, be calm, be satisfied to discharge the patient, have received the necessary training, and have the necessary knowledge. On the other hand, the patient is important, which means that the symptoms of the disease must be controlled and have a relative function’.

After the assessment and training, a meeting should be held to agree on how to intervene. This session can be done at the time of the patient’s discharge from the hospital and before he/she enters the living environment. In this meeting, the members of the treatment team should be present with the patient and the family and discuss the results of the evaluation. Factors affecting relapse as well as warning signs of relapse are some of the issues that should be mentioned in this session. Also, the next steps of the intervention should be clearly explained to the patient and the family.

- Expert (male, nurse in hospital, 21 years of work experience): ‘It is important that we proceed step by step [to discharge the patient] . . . that is, the patient and the family must be prepared for discharge. In this process, the family and the patient should know the approximate time of discharge, the length of treatment, the preparations and administrative steps of discharge, and how to care for the patient after discharge’.

Preparation of support network/neighborhood environment and social mobilization

Participants emphasized the role of the support networks and local people in patient care to prevent relapse. They argued that although community-based approaches may not apply to patients living in cities, defining the community as a support network and neighborhood environment could lead to the development of patient care at the out-of-the-family level.

- Expert (male, psychiatrist in hospital, 15 years of work experience): ‘In the case of a mentally ill person living in an apartment, one should not expect to live in an environment with the characteristics of a community. Here we have to think about the neighborhood environment, the neighbors who are constantly in stress and fear when the disease recurs, do not know how to react to the symptoms of the disease. . . Sometimes, due to stereotypes about the mentally ill, as soon as they understand that a mentally ill person lives in the neighborhood, they file a complaint [so that the landlord does not rent a house to this family]. As a result, a cycle of problems arises that does not benefit the patient or even the neighbors . . . I think we should first convince the neighbors to teach them to be sensitive and aware of issues’.

For this purpose, it is necessary to explain in the patient and family preparation session the intervention and the need for the participation of the members of the support and neighborhood networks. In doing so, it is crucial to ask the patient and family to make a list of people who may help them with direct care and other support. These people can be found in the network of friends, kinship, cooperation, neighborhood groups, and health care systems.

- Expert (female, social worker in NGO, 35 years of work experience): ‘The environment in which the patient lives should be intervened and the patient should receive the necessary support from the environment. However, this psychological training may not be limited to the family, and the social environment, neighbors, and family environment in which the patient lives should also need minimal training so that they can better understand and support the patient’.

Once the list of potential supporters is determined, the support network will be prepared. To involve people in supporting and caring for the patient, it is necessary to first be sensitive and aware of the issue. The facilitator must meet individually with members of the support network and members of the neighborhood. They need to be educated about the consequences of relapse for the individual and the family and be aware that regardless of any factors relapse of the disease is common and may include a vicious cycle of frequent visits to a physician and treatment settings. Building a sense of community is key along with increasing neighborhood awareness of mental health issues.

- Expert (female, community psychiatrist in hospital, 5 years of work experience): ‘When we say we should de-stigmatize the individual in the living environment, it means educating the community about it . . . One may say that this is a family issue and it has nothing to do with us, but we should be taught that the health of the community depends on the health of people, we cannot expect to have a healthy society when we do not help to ensure the health of each member of that society. We also need to educate the community that some psychiatric illnesses are common and that many of us may have experienced them at some point in our lives’.

After preparing the family and sensitizing the members of the support network and the neighborhood environment, a social mobilization meeting should be held. Preparations for this meeting need to be made by families of PLS and key stakeholders in the community. They should specify the time, place, and manner of the meeting, as well as what will be stated in the meeting with the help of the facilitator. Inviting community members to participate in the social mobilization session should be done by key individuals, local organizations, neighbors, and the family members of PLS.

- Expert (male, physician, and community worker, 15 years of work experience): ‘When we talk about a community-based intervention [which now the community means the neighborhood environment and the individual support network,] we have to believe that it is the members of this community who have to take care of everything, that is, from the beginning and the formation of local teams should be at the suggestion of the members of that community, who should plan the meeting themselves and the expert should only have a facilitating role’.

In this session, the disease and its consequences for the individual and family, and the environment should be discussed again and the need for community participation in better care of the patient to prevent relapse should be explained. At the end of the session, participants are asked to join local care teams if they wish.

- Expert (female, social worker in NGO, 35 years of work experience): ‘We may need to make their neighbors aware that relapse has consequences not only for the patient but also for those of them who are their neighbors. We need to motivate them to be involved in patient care’.

Local team formation

At this stage, the facilitator organizes people who have volunteered to participate in the social mobilization process into small groups. PLS, family members, neighbors, social network members and relatives, and other members of the community can join local teams.

- Expert (female, psychologist and community worker, 20 years of work experience): ‘We need to have a program that educates the general public, or those who are compassionate patients and want to help in some way, to first change their attitude towards the disease and then to be able to help the patient and his family by participating. And they can receive these people and their families among themselves . . . Sometimes you see that they consider a care program that responds better than a specialist because they are the ones who see the patient by their side day and night and know what excites him, what depresses him . . . the solution that comes out of this group works better’

The facilitator must act from the beginning with the aim of empowering the local team. To do this, facilitators should delegate the management of local groups to community members and help team members discuss problems surrounding the life of PLS, and design and implement possible evidence-based solutions. It should be noted that the decision and implementation are the responsibility of the local team.

- Expert (male, physician, and community worker, 15 years of work experience): ‘The important goal in community-based interventions is to empower those people in the community. We must be careful that our intervention does not make the community dependent. . . One view is to give the team the confidence from the beginning that they now specialize in their own issues and that we play a facilitating role’.

Design an RPI program

Participants believed that members of the local RPI team could better plan to reduce risk factors and reinforce positive factors based on their knowledge of PLS. But they need to be trained in this area. Therefore, one of the most important steps after forming a local team is to educate these people about the disease, relapse, protective and risk factors, relapse triggers, warning signs, and emergency response.

- Expert (male, psychiatrist in university hospital, 30 years of work experience): ‘As specialists, we can inform and educate them. Many families say we do not know at all what the disease is, when it gets better, what we should do . . . Even the family says we hide the patient from others, so family communication is limited. If the awareness is done at the community level, the relatives and friends of the patient can be educated and can be successful in interpersonal interactions with the patient, even participating in the care of the patient’.

The local team also needs to get information at a meeting about intervention methods to reduce relapse that has been confirmed to be effective. Local team members may decide to use some of these interventions or employ part of one or more interventions.

- Expert (female, psychiatrist in university hospital, 27 years of work experience): ‘A series of pre-designed interventions, such as psychosocial rehabilitation, or CBT that have been studied many times before and we know can help the patient, the local team can use the same studies instead of starting from scratch. For example, teach them about the importance of warning signs and say that you should look for these symptoms in your patient and plan who to check for these changes, if he sees changes, to whom to report them, and so on. In this way, both the initiatives of the local team itself and the methods whose effectiveness has been confirmed have been used’.

Part of this program should identify the factors influencing relapse and the trigger factors. The local team needs to be helped to identify these factors at different levels: individual, family, environmental, and social. This group should also be able to list the symptoms that the PLS have as warning signs of relapse. Making this list will help the local team plan a patient-specific program.

- Expert (female, social worker in NGO, 35 years of work experience): ‘The family can tell better than anyone how the relapse starts in the patient, when it starts with what symptoms, for example, they say when he starts overeating and binge eating, we understand that he is relapsing or changing his sleep, or our patient sleeps for hours. . . These are called warning signs. . . It’s good that they can recognize them’.

In the next step, members should be able to set up an action plan to prevent relapse. Programs in different local teams for RPI can vary. The facilitator needs to help the local team in meetings to consider team members’ suggestions for preventing relapse and welcome local initiatives.

- Expert (female, social worker in hospital, 13 years of work experience): ‘As social workers, we can help the local team with problems that prioritize and find solutions. Sometimes local team initiatives, despite being much simpler than an expert intervention, can help the patient because they are more accessible, more stable, and less expensive’.

Implement an RPI program

Participants mentioned the cooperation of the local team with the team of experts was of major significance. Because relapse is part of the nature of the disease and requires specialist intervention, the local team cannot function without the help of specialists. RPI programs designed by the local team are carried out with the participation of the patient, family, local team, and the community. An important part of these programs is monitoring and managing relapse warning signs. Local team members should monitor these signs regularly and report online to the specialist team for specialized intervention if needed.

- Expert (female, community psychiatric, 5 years of work experience): ‘You cannot plan a program to prevent relapse without the involvement of a team of specialists. Finally, the nature of the psychiatric illness is such that it needs regular visits and counseling, and care must be taken by both family and friends as well as the specialist team. Where the drug has side effects and the dosage or type should be changed, home caregivers cannot intervene. This part of the work should be with a specialist team, but reducing stress and reducing risk factors for recurrence can be left to the family’.

A very important component of the RPI is the interaction of these two teams (i.e. community and specialists) in the implementation of RPI programs. As a representative of the specialized team, the facilitator is in regular contact with the local team and facilitates the exchange of information and cooperation between the two teams. During the implementation of RPI programs by the patient, family, local team, and community, the facilitator and specialist team should regularly monitor for relapse warning signs and give feedback on the results of this monitoring. In this way, they will better understand what areas they should focus their activities on.

- Expert (male, physician, and community worker, 15 years of work experience): ‘One task that can be left to the facilitator of community-based interventions is to be a liaison of the specialist team and those who are caring for the patient at home, can transfer the care needs to the specialist team faster or when needed Intervention in crisis is to act faster so that the patient does not need to be readmitted’

Participatory monitoring and evaluation

Participants considered monitoring and evaluation of the RPI program to be an essential activity. Before the local team can decide on an RPI program, they need to receive training on how to monitor and evaluate the RPI program.

- Expert (female, psychologist, and community worker, 20 years of work experience): ‘One of the ways to run a program is to check during regular activity to see if we are doing the right thing, not deviating from the goal, collecting information correctly, and finally to evaluate how far we have reached the goals and what the achievement of our intervention has been. This is called monitoring and evaluation. We need to train the local team to have the tools to express themselves, to be able to both checks the process and the output, to finally figure out how much they could reduce relapse in their patient through their action plan’.

The local team, with the help of the facilitator, designs the necessary tools for monitoring and evaluation. It should also be specified who performs monitoring and evaluation at what intervals and how the results are reported to whom. Local team members need to be helped to identify the indicators associated with each specific goal. They also have to decide on data sources. That is, determine what data is available at what time, by whom, and from what sources.

- Expert (male, physician, and community worker, 15 years of work experience): ‘One of the important tasks of this team [that is going to be formed in the community to care for the patient] is to determine how the data related to the process should be collected. The team can control its own performance. They need to identify someone who can monitor the process with the designated tools, collect data, and report to the team so that they can analyze whether they are doing the right thing’.

Discussion

Mental illnesses are a leading cause of disability and premature mortality worldwide imposing a substantial burden on families, communities, and healthcare systems (Price et al., 2016; Zabihi Poursaadati et al., 2021). This study aimed to understand the process and design of a family and community-based RPI in PLS. Therefore, the experiences and views of members of key stakeholders (i.e. clinicians and healthcare practitioners) were examined by qualitative content analysis. Social workers, psychiatrists, nurses, occupational therapists, and community health workers were invited for interviews. The majority of participants (48.3%) were social workers and their average years of professional activity was 15.3 years. During 16 individual interviews and 2 focus group discussions, participants presented their views on the stages and requirements of family and community-based intervention to prevent relapse, and after preparing the initial draft, the details of the intervention were re-examined by two expert panels. Finally, the model was developed in six steps, including patient and family preparation, preparation of support network/neighborhood environment and social mobilization, local team formation, designing an RPI, implementing an RPI, participatory monitoring, and evaluation.

Previous studies on RPI programs have shown that although medication should be the primary focus of treatment (Aigbogun et al., 2018; Fusar-Poli et al., 2015; Højlund et al., 2021), adherence to medication alone cannot prevent relapse (Fusar-Poli et al., 2015; Strassnig et al., 2018). Major reasons for the return of symptoms are the recurrent nature of this disorder and the presence of relapse precursors in the ecological layers of PLS that cannot be controlled with drug treatment and require additional interventions (American Psychiatric Association, 2013; Fusar-Poli et al., 2015; Naeem et al., 2016; Zabihi Poursaadati et al., 2021). As a result, psychosocial interventions with multidisciplinary treatment and rehabilitation teams are recommended in these interventions. Although the members of these teams tried to see all the dimensions of the disease as a whole, the absence of the patient and the main caregiver in the decisions and planning of interventions has often led to unsuccessful results in preventing relapse. Thus, in the newer approaches, as we describe in our study, the patient and family members are considered as part of an RPI team, and involving them in the treatment process is one of the basic principles (Martin & Finn, 2011).

Although the extension of the teamwork approach and holistic models partly covers the dimensions of the disorder, the problem of the treatment gap in PLS complicates delivering services (WHO World Mental Health Survey Consortium, 2004). According to WHO, only one in four people with a severe mental disorder has access to appropriate treatment (Lund et al., 2012) and a significant proportion are deprived of access to care and treatment for reasons such as social stigma (Ahmad et al., 2017; Corrigan et al., 2012; Moritz et al., 2014), poor public knowledge about psychiatric disorders (Girón & Gómez-Beneyto, 1998; Moritz et al., 2014; Zhou et al., 2017), poor insurance coverage (Fortney et al., 2009; Mansouri et al., 2013; Zhou et al., 2017), weak health care systems (Ahmad et al., 2017; Mansouri et al., 2013), and lack of access to psychiatric centers (Keynejad et al., 2018; Zabihi Poursaadati et al., 2021). Therefore, the WHO has recommended the integration of mental health care into primary health care and community-based interventions, especially in low and middle-income countries (Lund et al., 2012; Wakida et al., 2018). But these interventions have so far focused more on delivering services in the living environment, such as assertive community treatment. While according to the local development model, the basic principle in providing community-based services is the full participation of individuals in the decision-making and implementation of RPI programs including evaluation (Kourliouros, 2013). Also, capacity building and development of individual skills in caring for PLS, while reducing the costs of referring to specialists (Malakouti et al., 2009), leads to improved attitudes (Mann & Himelein, 2004) and reduction of the social stigma of severe mental disorders (Couture & Penn, 2003). In accordance with these recommendations, participants in this study were asked to discuss and illustrate the basic steps and details of a RPI program based on their knowledge and experience.

Participants emphasized several basic elements for model design. First, in preventing relapse, it is necessary to pay attention to how relapse occurs. For this purpose, a model should be designed to consider how risk factors affect relapse and the intervention should be based on reducing risk factors and strengthening protective factors. Previous studies have suggested the factors influencing relapse in different ecological layers (Ahmad et al., 2017; Izon et al., 2018; Kazadi et al., 2008; San et al., 2013; Xiao et al., 2015; Zabihi Poursaadati et al., 2021; Zhou et al., 2017). Risk factors for relapse include poor communication skills (Wu et al., 2017), cognitive deficits (Trapp et al., 2013), negative attitudes toward illness and treatment (Moritz et al., 2014), high expressed emotion in the family (Izon et al., 2018; Maarefvand et al., 2017), lack of effective and trained caregivers (Gurak & Weisman de Mamani, 2016), negative family attitudes toward the illness and treatment (Brain et al., 2018; Zabihi Poursaadati et al., 2021), social exclusion (Reddy et al., 2019), stigma (Corrigan et al., 2012; Couture & Penn, 2003; Price et al., 2016), poor insurance coverage (Fortney et al., 2009; Mansouri et al., 2013; Price et al., 2016), lack of access to professional care (Keynejad et al., 2018; Lund et al., 2012), and weak policies in mental health (Abdulmalik et al., 2013; Rebello et al., 2014). Interventions designed to prevent relapse have so far tried to cover each of these, but have focused less on multi-layered involvement. The biopsychosocial perspective on care emphasizes the ongoing connection of these layers to each other (Borrell-Carrió et al., 2004) and considers effective care to be dependent on integrated care (Shaw et al., 2011). In this model discussed by our study participants, the individual and family components are heavily involved. In addition, for effective care, only these two layers are not enough, and the support network, the living environment, and the community are also considered vital components. This is the approach that WHO has sought to incorporate into its mental health programs and has recommended with emphasis on low- and middle-income countries (Keynejad et al., 2018; Lund et al., 2012). Continuing care from the psychiatric center to the living environment and integrating care is among the important goals of a well-functioning patient-centered mental health system (Maarefvand et al., 2017; Wakida et al., 2018; Zabihi Poursaadati et al., 2021). In this model, the emphasis is on identifying relapse triggers in all three layers.

The second element of the model is the active participation of the patient, family, support network, and community members in the care of PLS. Previous studies have made many attempts to improve people’s attitudes about the disorder using cognitive-behavioral models (Burns et al., 2014; Rathod et al., 2010; Turkington et al., 2006). But they were mostly based on education. While theories of behavior change emphasize, especially in the field of health, increasing knowledge does not necessarily lead to a change in attitude and behavior (Fertman & Grim, 2016). The model prescribed by our study participants emphasizes the conscious and responsible behavior of stakeholders in accepting an important role in the care of PLS. Highlighting the role of non-professionals in care and delegating part of the duties of the medical staff to the local care team in this regard is of paramount importance. Task-shifting has been one of the most important strategies of WHO in reducing the treatment gap, especially in low- and middle-income countries (Fulton et al., 2011).

This approach has also been used in some low and middle-income countries. A study in India investigated the effectiveness of a community-based intervention on treatment adherence in PLS. In this study, a three-level community-based intervention was implemented. At the first level, outpatient treatment was performed by experts such as psychiatrists and psychologists. At the second level, they trained health workers to provide mental health services in local communities, and at the third level, they involved family members and key people in the individual’s support network to actively participate in the care of PLS. The results of this research showed that the people who received this intervention had better adherence to treatment than the people who received the intervention of experts (Chatterjee et al., 2003). In other studies, in India and Pakistan, shifting the tasks of experts to trained health workers was examined. PLS were visited by trained health workers and referred to the expert team if needed. These people were selected from the members of the community and the PLS’s living environment (Humayun et al., 2017; Sivakumar et al., 2022). Involvement of all stakeholders in the care process is derived from the perspective of empowerment, indicating that people are the best experts in solving their problems and this perspective tries to help people by building capacity and identifying and using their potential (Jorm, 2012).

Third, the experts in this study considered the mutual interaction between formal caregivers and informal caregivers as another important element in RPI programs. In recent decades and after the de-institutionalization movement, an important part of care has been entrusted to the family members (Novella, 2010), while they have not had sufficient resources to care for the patient, including the information and skills provided by the expert teams. Also, the expert team is more in touch with the patient and ultimately the patient’s primary caregiver. In this model, it is emphasized that formal and informal caregivers along with the patient are important members of the RPI programs and rehabilitation teams. Traditional medical approaches based on the knowledge and experience of the experts have been modified in this model and much attention has been paid to the knowledge and experience of informal caregivers. Our study participants’ views indicate that professionals are provided as a source of support to the team of informal caregivers to help them plan, implement and evaluate RPI programs according to their resources and capacities. Such practice may also help avoid overdependence on formal healthcare systems and prescription medications.

The fourth element based on the view of study participants is paying attention to the definition of community in this model. Despite their effectiveness, community-based interventions have limitations for implementation in urban zones (Finkenflügel et al., 2005). Also, in metropolitan areas and with rapid urbanization worldwide, it is less possible to find an area that has the characteristics of a community based on local development theories. Experts in this study suggested that to adopt this model in an urban zone, we can redefine the community in the context of the neighborhood environment (i.e. the people who have the most interaction in face-to-face relationships with PLS and their family members). Thus, community in this model means support network and neighborhood environment. This definition helps to correctly identify important others in the life of PLS and their family members. Since one of the important risk factors in relapse is the exclusion of PLS and families from reference groups and social isolation (Corrigan et al., 2012), this model provides a basis for activating others important in the care and in establishing social interactions. Evidence has shown that maintaining and developing a support network in people with severe psychiatric disorders plays an important role in reducing relapses and increasing the quality of life of individuals and family members (Avison, 1996; Maulik et al., 2010).

Participants in this study emphasized that the fifth element in the family- and community-based model, should be to pay attention to the initiatives of the local team in planning and implementing a relapse prevention program. Many studies that tried to use a community-based approach in caring for PLS (Burns, 2010; Burns et al., 2007) have not considered community-centeredness and only focused on providing services in the community. In such initiatives, members of the treatment and rehabilitation team were present in community-based centers and provided their services, with increased access to professional care services, the initiatives imposed a very high cost and financial burden due to overuse of expert support and clinical care. Our study participants’ views on this model indicate that as the process progresses, the role of professionals is limited to crisis intervention, and the role of local team members becomes more prominent. Professionals serve as facilitators and encourage the team to use local initiatives to reduce risk factors or to strengthen protective factors. The RPI programs established and implemented by the local team do not have the complexities of professional care and this will be an advantage in continuing care for PLS and improving their quality of life and health outcomes.

The last element, according to the participants, was personalized care. Due to the severity of schizophrenia and its various consequences on the life of PLSs, their family, and the health system, it requires care beyond standard care, and approaches known as personalized care can be effective in these people (Passos et al., 2019). In this model, after providing the necessary training, PLS and the family are asked to list specific relapse triggers, as well as to list the symptoms that are warning signs of relapse, and finally the local team plans for these cases. That is, each PLS receives customized and culturally sensitive care commensurate with their characteristics and illness.

While interpreting the findings of this study some limitations have to be kept in mind. First, the results of our study are constrained due to all limitations inherent to qualitative study designs (Maarefvand et al., 2017; Zabihi Poursaadati et al., 2021). Second, our study did not include community members and family members of PLS. To the extent that they may have different perceptions of effective community-based RPI programs, our study participants’ views may have limited validity in designing effective RPI programs. Similarly, we did not include any PLS in our study which could limit the application of the intervention components proposed by experts and stakeholders who participated in our study. Despite these limitations, this is one of the first of its kind and detailed expert consultation on designing RPI programs in Iran. In addition, our study sample was highly diverse concerning participants’ areas of work, experience, and qualifications. Given the rising burden of PLS and serious mental illnesses in Iran, this model can be pilot tested with communities that have no formal structures on a community-based model of prevention, treatment, and rehabilitation of schizophrenia and other serious mental illnesses. Future discussions on designing effective RPI programs in Iran should involve large cohorts of family and community members, clinicians and researchers, community health workers and businesses, and policymakers.

We examined the views of experts on the design of the RPI model for PLS based on the capacities of the family, support network, and communities in Iran. Six steps were identified in the intervention, starting with hospitalization and preparing the PLS and family to help them define a post-discharge care network. RPI continues by identifying warning signs and relapse triggers through the local intervention team, and the specialist team acts as a source of support alongside the local team. Based on the views of our study participants, it can be inferred that the best models and approaches will focus on empowerment, local development theories, and participatory models that help individuals, groups, and communities to overcome their problems. This model can also be developed for other chronic physical and mental health problems and substance use problems and it is recommended that future studies evaluate the effectiveness of this model in PLS, severe psychiatric disorders, and other chronic diseases. Given that this is the first of its kind discussion in Iran, pilot testing of the interventions proposed by our study participants could be a good starting point for neighborhoods that deal with the major burden of serious mental illnesses in their communities.

Footnotes

Author contributions

Conceptualization, MZP, MM, JB, and SH; Data curation, MZP, MM, and SH; Formal analysis, MZP, MM, JB, and JK; Investigation, MZP; Methodology, MZP, MM, and JF; Project administration, MM; Supervision, MM and JB; Writing – original draft, MZP; Writing – review and editing, MM, JB, SH, and JK.

Conflict of interest

The authors declared no potential conflicts of interest concerning the research, authorship, and/or publication of this article

Ethical approval

The study was approved by the Ethics Committee of the University of Social Welfare and Rehabilitation Sciences, Tehran, Iran (case number: 1397.131)

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Informed consent

Informed consent was obtained from all subjects involved in the study.

ORCID iD

Maryam Zabihi Poursaadati

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