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

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

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).

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Table 1.

Demographic characteristics of the participants.

Variables	Formal caregivers
	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).

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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.

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.

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.

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.

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.