Exploring the perceptions of people diagnosed with schizophrenia and their family members to inform the cultural adaptation of cognitive behavioural therapy for psychosis in Saudi Arabia: a qualitative study

Abstract

Abstract

Cognitive behavioural therapy (CBT) is one of the best-evidenced psychosocial interventions for psychosis and is recommended by the National Institute for Health and Care Excellence and the American Psychiatric Association. CBT was developed and derived from Western cultural values, which may not be appropriate for non-Western cultures. Trials of CBT in Western countries have indicated that participants from ethnic minority groups demonstrate low rates of engagement, retention, and recruitment. This indicates that the principles underlying CBT may conflict with individual beliefs and cultural values in non-Western countries. Therefore, we interviewed 15 people diagnosed with schizophrenia and 15 with their family members to explore the beliefs and attitudes of people diagnosed with schizophrenia and their family members concerning the proposed CBT intervention for psychosis in the Saudi context. The findings revealed that most participants accepted the proposed intervention. Important factors that influenced participants’ engagement and motivation in the CBT intervention were related to the therapist’s qualities (sex, empathy, and competence), family involvement, religion, and the number and format of CBT sessions for psychosis.

Key learning aims

1. (1) To explore the beliefs and attitudes of people diagnosed with schizophrenia concerning the proposed CBT intervention for psychosis and how to improve it to make it more appropriate for their needs and cultures.

2. (2) To explore the beliefs and attitudes of family members of people diagnosed with schizophrenia concerning the proposed CBT intervention for psychosis and how to improve it to make it more appropriate to their needs and culture.

Introduction

Psychosis is a mental health disorder that manifests through positive and negative symptoms, disorganised thinking, or catatonic behaviour (American Psychiatric Association, 2013). However, the underlying cause of psychosis remains unclear. Several risk factors contribute to the risk of developing psychosis, such as genetics, prenatal infection, migration, cannabis abuse, and traumatic events (Mäki et al., 2005; Morrison et al., 2003; Tandon et al., 2008). In Saudi Arabia, schizophrenia is the most common mental health disorder in in-patient settings (Alosaimi et al., 2017). It has multiple effects on a person’s life, including their profession, marital status, and education. Approximately 50% of people diagnosed with schizophrenia are unemployed, 46% are never married, and 85% have a low level of education in Saudi Arabia (Alosaimi et al., 2017; Daradkeh and Al Habeeb, 2005).

Anti-psychotic medications are regarded as the main treatment for psychosis and have demonstrated efficacy in reducing positive symptoms. Nevertheless, approximately 20–30% of people with psychosis experience persistent symptoms regardless of whether they take anti-psychotic medications (Lally and Gaughran, 2019). Therefore, non-pharmacological interventions are needed and recommended by the National Institute for Health and Care Excellence (NICE) to treat symptoms and enhance social functioning and quality of life (NICE, 2014).

Cognitive behavioural therapy (CBT) is one of the best-evidenced psychosocial intervention for psychosis and is recommended by NICE and the American Psychiatric Association (Lehman et al., 2004; NICE, 2014). CBT was developed and derived from Western cultural values; however, other cultures have also significantly contributed to its development. For example, Balkhi’s earlier work suggests that the principles of CBT may not be universally suitable for non-Western cultures (Hawadi and al-Asyhar, 2023).

CBT trials in Western countries indicated that participants from ethnic minority groups have low rates of engagement, retention, and recruitment (Rathod et al., 2005; Rathod et al., 2019). This indicates that the principles underlying CBT may conflict with individual beliefs and cultural values in non-Western cultures (Algahtani et al., 2019; Naeem et al., 2016).

There is a paucity of studies conducted in the Saudi context that assess the cultural adaptations of CBT (or any other intervention) for psychosis. To date, no formal culturally adapted psychosocial interventions for people with psychosis in Saudi Arabia have been accredited by the Saudi Commission for Health Specialties (SCFHS, 2014). To the best of our knowledge, the present study is the first to investigate the acceptability and feasibility of a proposed CBT intervention for psychosis in the Saudi context.

Method

Study design

Consistent with the aims of the study, a qualitative design was adopted as they are useful in the development phase of psychosocial interventions (Skivington et al., 2021). They offer researchers insight into where challenges may occur in the implementation of interventions and how these challenges can be overcome prior to further evaluation. For example, researchers could conduct individual interviews with stakeholders to explore false beliefs that could lead to intervention failure (Skivington et al., 2021). In this study, we concentrated on the development phase of psychosocial therapies, and the participants did not receive CBT; instead, we asked them about their opinions on the proposed CBT components (Skivington et al., 2021). The main reason for choosing this approach was that some trials have shown that CBT may be considered ineffective because insufficient effort is made during the development phase.

For example, a study conducted in Saudi Arabia to test the effectiveness of CBT showed low rates of engagement and retention among participants because of the low effort made during the development phase (Wahass and Kent, 1997a; Wahass and Kent, 1997b). Therefore, we decided to be more cautious and focused on the developmental phase by conducting a series of qualitative studies to explore the beliefs and attitudes people diagnosed with schizophrenia and their families have towards the proposed CBT intervention prior to implementing a randomised controlled trial, identifying cultural barriers to implementing the CBT intervention and determining how its components could be adapted to Saudi culture.

Setting of the study

The participants were recruited from an out-patient unit at the Eradah Complex for Mental Health in Riyadh, Saudi Arabia. This institute has 625 beds and follows the principles of a hybrid model, in which diagnosis, treatment, and research on mental health issues and addictions, are conducted at the same hospital (Al-Habeeb et al., 2016)

Sampling and recruitment

Convenience sampling was adopted owing to the reduced access to potential participants caused by the COVID-19 pandemic.

Inclusion criteria

Eligible participants met the following inclusion criteria:

• People diagnosed with schizophrenia who attended out-patient departments.

• Family members, such as parents, siblings, husband, wife, or uncle, who were caring for an individual diagnosed with schizophrenia and attended the out-patient department.

Exclusion criteria

• People diagnosed with schizophrenia who did not have the capacity to consent and ability to participate in the interview; for example, people with serious psychotic symptoms which might prevent them from understanding the nature of the study. The participants’ capacity was assessed by psychiatrists working in the out-patient departments. In addition, on the day of the interview, the potential participants were assessed again by the researchers, who asked them about the process and nature of the interview. If they did not understand the process and the nature of the interview, they were excluded from the study.

• Family members not actively involved in the care of individuals diagnosed with schizophrenia.

• People with severe illnesses, learning disabilities, or substance misuse were excluded from the study.

Recruitment of participants

After obtaining ethical approval from the University of Manchester and Eradah Complex for Mental Health, the primary researcher held a meeting with the charge nurses at the out-patient departments for men and women and discussed the objectives of the study and the planned approach to recruiting the participants. The charge nurses were asked to provide study information sheets to people diagnosed with schizophrenia and their family members accompanying them to appointments at the out-patient unit. The potential participants had 24 hours to consider participation. The lead author arranged for the participants who agreed to participate in the study a suitable date, time, and interview method. On the day of the interview, written consent was obtained from the participants who had chosen face-to-face interviews before the interview began.

Consent was obtained verbally from participants who chose telephonic interviews. The researchers explained the items on the consent form to the participants and obtained their consent on the points listed, which were audio-recorded.

Data collection

Fifteen individuals diagnosed with schizophrenia and 15 family members were interviewed, with an overall sample of 30 participants. Seventeen face-to-face interviews were conducted in a quiet room in the out-patient department of the Eradah Complex for Mental Health, and 13 were conducted via telephone between November 2020 and March 2021. Twenty-five interviews were conducted by the lead author, and five interviews with women were conducted by a female co-researcher (A.A.) as the participant preferred a female researcher to conduct the interview. The number of participants in the study was determined based on the data saturation reached by 30 participants. Tables 1 and 2 summarise the sample characteristics.

Table 1. Characteristics of participants diagnosed with schizophrenia participating in the interview

Table 2. Characteristics of family members participating in the interview

The interview guide was based on the systematic review of Degnan et al. (2018) of culturally adapted CBT for schizophrenia, which found that the adapted components included engagement and assessment, psychoeducation, working with psychotic symptoms, medication management, and relapse prevention. Questions were organised around these components, but participants were asked additional open questions in which they could add their thoughts on adaptation, feasibility, and acceptability issues outside these categories (see Supplementary material). Despite the availability of the cultural adaptation framework for CBT, which was developed based on a series of qualitative and quantitative studies and consists of four stages (Naeem et al., 2019), we chose the systematic review of Degnan et al. (2018) because it was conducted using a rigorous methodology, specifically designed for schizophrenia and developed to include any psychosocial interventions, including CBT.

All interviews were audio recorded, fully transcribed into Arabic, and translated into English. During the interview, the proposed components of CBT were explained to the participants in simple and easy language, and more details of these components and the interview schedule were provided (see Supplementary material). The interview questions elicited the views of people diagnosed with schizophrenia and their family members on the proposed components of CBT and adaptations needed for implementation in the Saudi context.

Data analysis

Data were analysed using framework analysis (Richie and Spencer, 1994), which involves five stages: familiarisation, establishing a thematic framework, indexing, charting, and mapping and interpretation (Richie and Spencer, 1994). Framework analysis allows for inductive and deductive coding. This is consistent with the theoretically informed approach adopted in the study, informed by the framework of Degnan et al. (2018) for cultural adaptation of healthcare interventions. The lead author analysed the data and created a coding framework for the themes. Two members of the study team (K.L. and O.P.) read the transcripts and agreed on coding and framework. After indexing based on the theoretical frameworks, the data were summarised in chart form using the ‘create summary link’ function in NVivo10. The aim of the charting phase was to reduce the original data to a more manageable level, facilitating meaningful interpretation in the later stages of analysis. Finally, the lead author and two members of the study team moved back and forth across and within the entire dataset to understand the relationships between the themes and sub-themes. During this stage, some themes merged or collapsed, and the thematic framework was refined until it provided a rich and comprehensive account of the phenomena under investigation.

To enhance rigor, the interviewers took field notes during the interviews. Following each interview, reflective memos were written and discussed with the wider study team to elaborate on initial impressions and understanding of the interaction and to assess any incorrect assumptions or personal influences that might have occurred during the interview (Halcomb and Davidson, 2006).

Results

The analysis generated one theme and four sub-themes, all of which are summarised in Table 3.

Table 3. Main themes and sub-themes

Acceptability of CBT components for psychosis

Components of the CBT intervention

Most participants accepted the initial components of CBT intervention for psychosis and affirmed the need for it to be readily available in mental health services. They believed that mental healthcare was currently informed by the medical model of mental illness and was insufficient for recovery, and that people diagnosed with schizophrenia needed more holistic care to recover.

Excellent programme. I feel the psychological support is better than medications. The psychosocial sessions give the patient motivation and hope for the patient and make him cooperate with you. The hospital should offer this program not just offer medications. (Family member 6)

Honestly, I would like to have cognitive therapy in the hospital, but they did not offer me that. (Patient 3)

In the engagement and assessment component, participants discussed the therapist’s role in motivating their relatives who had schizophrenia and whether they were to participate in the programme.

The preliminary components of the proposed CBT programme were discussed in more detail with the participants. Based on their experiences, this debate focused on the factors that might have an impact on the programme’s components as well as on its implementation. It also involved identifying ways to improve the programme to make it more appropriate to the requirements and cultural backgrounds of the participants. These are discussed in detail in the next section.

Participants felt that the engagement and assessment component was an important phase and a potential factor affecting patient motivation to engage in therapy. The participants believed that the role of the therapist in CBT for psychosis should include more than just identifying the problems that people diagnosed with schizophrenia experience; they believed that the therapist should also demonstrate empathy for people with schizophrenia and the problems that result from their illness. In addition, they stressed that the therapist must keep the information confidential and not share it with family members without the patient’s permission.

They always ask the patients if they hear voices or have delusions. The patients regard these questions as a kind of mockery and joke, which they spread amongst themselves. I want to talk in the programme about what happened to me in detail rather than be asked questions like these. (Patient 15)

Whatever the patient discloses to the therapist about their private life or secrets should be kept private and not revealed to their family. (Patient 7)

Furthermore, the therapist’s sex was perceived as having an important impact on the participants’ engagement. Female participants diagnosed with schizophrenia preferred female therapists to male therapists. This preference was also evident when all female participants diagnosed with schizophrenia preferred to conduct interviews with a female co-researcher. However, some female participants’ family members agreed to be interviewed by the main researcher, who was male. All the male participants in the study preferred and agreed to be interviewed by a male researcher. Thus, the availability of therapists of both sexes is vital to motivate people diagnosed with schizophrenia and their family members to participate in CBT for psychosis in Saudi Arabia.

Furthermore, the participants emphasised the necessity of speaking in easy language and avoiding medical terminology. They reported that medical terminology was often unclear and unfamiliar to them and their relatives, causing confusion and misunderstanding regarding the patient’s case or the treatment plan.

They use words such as schizophrenia or delusions, and I have no idea what they mean. I am not a mental health professional. They should simplify the information more. (Family member 14)

In the psychoeducation component, some participants diagnosed with schizophrenia were unconvinced that they had schizophrenia and ascribed their condition to magic or the ‘evil eye’. They were frustrated with the healthcare system, which relies on a biomedical model for understanding and managing schizophrenia and neglects the religious aspect. Because the religious aspect was not considered in the formulation of their cases by mental healthcare practitioners, some participants suffered internal conflicts and mistrust of mental health services. Such internal conflicts and mistrust arose because of their conviction that their symptoms and problems occurred because of magic or the evil eye. Their belief, based on the Qur’an and the sayings of the prophet Muhammad (peace and blessings be upon him), is that magic or the evil eye can bring harm to individuals, manifesting in physical or mental symptoms. Ignoring this may negatively impact programme participants’ engagement with the proposed CBT interventions for psychosis.

I am confident that I am not ill. I was enchanted. The problem is that psychiatry does not believe in magic. The Holy Qur’an mentions magic and how it can have an effect on people. They want me to abandon Allah’s words and the Sunnah of his Prophet Muhammad, peace be upon him, in order to agree with their baseless words. (Patient 11)

However, some participants acknowledged that they had mental health problems but felt that they had not obtained adequate information regarding the nature and causes of their illness. They believed that being provided with this information was essential to their recovery.

I want to know the symptoms and causes of schizophrenia because understanding your problem is regarded as half the solution. I mean, if you know the problem and its causes, it will make it easier for you to solve it. (Patient 7)

Regarding the component of dealing with psychotic symptoms, participants reported the symptoms they experienced, including hallucinations, delusions, and disorganised thinking. Most participants diagnosed with schizophrenia felt that they lacked the cognitive behavioural skills to manage their symptoms and experienced resultant negative symptom-related consequences in their personal and professional lives:

I have difficulty concentrating. For example, if they assign me a task at work, I would be unable to complete it because I am unable to concentrate. The manager is always scolding me and accusing me of failing to complete the tasks he assigned to me. I want you to assist me with the problem of focusing and assimilation. (Patient 10)

Instead of employing behavioural and cognitive skills to manage psychosis symptoms, most participants used religious strategies, such as having faith healers, performing the Ruqyah Shariah (reciting the Qur’an and invocations over the patient for treating illnesses), or listening to the Qur’an. Several participants stated that they used these strategies from the onset of their illness and to the time of the interview. Most participants were firm in their conviction that these strategies were effective in reducing the distress associated with psychotic symptoms. Thus, respecting religious strategies in dealing with psychotic symptoms was considered essential by the participants.

I had taken multiple Ruqyah Shariah. I visited a Sheikh in a tiny village, and he recited the Qur’an to me and gave me oil to spread all over my body. Following that, I visited another Sheikh in our village. I went to these Sheikhs because I feel relaxed when I listen to the Qur’an. (Patient 1)

Participants further indicated that failure to incorporate the religious aspect in CBT for psychosis would make people diagnosed with schizophrenia seek spiritual intervention outside of mental health services, potentially resulting in their financial exploitation.

I had taken Ruqyah Shariah with someone who was a cheat. He stated that he would require six months and would need to visit me every two weeks for a fee of 500 Riyals [approximately £100] per session. (Patient 2)

In contrast, some family members reported that faith healers played a prominent role in recommending that family members and patients seek help from mental health services and encouraged adherence to the treatment plan they received. Overall, the participants emphasised the importance of religious practices.

Regarding medication management, most participants reported experiencing side-effects of anti-psychotic medication, such as weight gain, irregular menstruation, lethargy, and lack of sexual desire. They lacked sufficient information on how to manage these side-effects and emphasised the need to receive information on medications, including their advantages, disadvantages, course of treatment, side-effects, and how to manage them. Some participants felt frustrated and distracted from adhering to their medications but with no perceived improvement in their condition.

I want to know how long the medications should be taken for. Is it for life or for a set period of time? Nothing has changed in my condition before or after taking the medications. (Patient 8)

When discussing relapse prevention, most participants described the relapse stage as an unpleasant experience, and some had no memory of what had occurred prior to the relapse. However, they emphasised the significance of recognising the early warning signs of relapse for effective management:

No one has ever explained the early signs of relapse to me, but it is a fundamental and worthwhile stage, as the relapse signs need paying attention to. (Patient 15)

Family needs and recommendations

The most common need identified by the family members was information on the nature of psychosis, its causes, and symptoms. These participants were uncertain about the causes of their relatives’ psychosis and felt that they had received insufficient information about psychosis from mental health services. Interestingly, although most participants did not attribute their relatives’ psychosis to ‘witchcraft’ or the evil eye, most of them had sought help from faith healers before seeking help from mental health services. Family member participants demonstrated a high level of expressed emotions (criticism, over-protectiveness, and hostility) and a lack of knowledge about the nature of psychosis. For example, one mother criticised her son for being apathetic and lethargic. Most participants expressed a clear need for psychosis education to better understand their relatives.

We do not have information about psychosis; there are many families [sufferers] who lack information about psychosis. The family needs to educate themselves about psychosis to increase awareness. (Family member 11)

Participants identified further informational needs regarding anti-psychotic medications, including their advantages, side-effects, and how to manage them. The participants complained that they had not received such information regarding anti-psychotics from mental health services or healthcare professionals.

We do not know any information about the medications. What are the benefits of the medications and the way they work. Do the medications have side-effects? If the patient stops taking the medication, what will happen? They told us the medication removes the sounds [auditory hallucinations], but my mother still hears voices and speaks to herself. (Family member 7)

The third need highlighted by the family members was learning skills that could help them cope with the symptoms experienced by their relatives. The participants mentioned various symptoms that their relatives suffered from and with which they struggled to support them. These symptoms included hallucinations, delusions, introversion, and disorganised thoughts. Introversion was one of the most common symptoms experienced by family members who wanted to know how to respond to it. Participants felt frustrated when their relatives became introverted. They reported that introversion negatively affected relatives. For example, participants reported that during periods of introversion, some of their relatives neglected their personal hygiene, became isolated, and refused to talk to or meet their family members. The participants acknowledged that they lacked knowledge and experience in dealing with the negative symptoms of psychosis and that they needed to be taught how to help their relatives re-engage with them and their community.

He was hearing the voice and talking to himself. Now, Alhamdulillah [praise God], his case has become better, but he’s still an introvert and refuses to meet the people. I want you to help me work out how to motivate him to make new friends because he is introverted and just sitting at home. (Family member 6)

Furthermore, participants had difficulty supporting their relatives with the hallucinations and delusions they experienced. When their relatives experienced these symptoms, the participants described feeling confused and unsure about how to respond.

She was seeing things that did not exist and was saying she was hearing people talking to her. I remember she was pointing with her finger at things that she saw, while we didn’t see them. We were saying, ‘yes, we saw this thing’, until she calmed down and fell asleep, because when we argued with her, she was saying, ‘You did not believe me’, and ‘You do not like me’. She was pulling us with her hands and saying ‘look’, but we did not see anything. We need to know how to deal with these symptoms she suffers from. For example, do we oppose her if she says something illogical. (Family member 15)

The last need identified by the participants was information on the early signs of relapse and how to respond to them. The family member participants viewed the relapse phase as one of the most difficult experiences they had to deal with. They reported being unable to recognise the early signs of relapse in their relatives and how to deal with it. Therefore, they saw real value in the relapse prevention component and felt that it would help them recognise the early signs of relapse that the patient could potentially miss and enable them to act before the symptoms worsened.

For the relapse prevention phase, the patient can rarely notice the early signs of relapse, and so these signs can be observed by family members. So, we want to know about the early signs of relapse and the steps we should take to avoid relapse. It is necessary to know this. (Family member 1)

Although most participants found the preliminary CBT components for psychosis acceptable, some made recommendations to improve the programme. For example, they recommended that the programme include home visits. They stated that home visits would encourage them to complete the programme because their families would sense that the therapist was genuinely interested in assisting them.

I’d prefer family sessions, but only at home because my mother is elderly and concerned about me, and she is unable to accompany me to the hospital. (Patient 2)

We live in the south of Saudi Arabia and the hospital is far away, and if my brother has an appointment in the mental health hospital, I usually travel with him to take him to his appointment. Also, my parents are elderly and are unable to accompany my brother to the hospital, but if they visit them at home to inform them about my brother’s condition and to monitor his progress, they would be pleased and understand that you care about their son. (Family member 14)

Session format

All participants diagnosed with schizophrenia, except one, stated that they preferred individual sessions over group sessions and largely preferred individual sessions without family members. Nevertheless, some participants indicated that certain circumstances might require the attendance of a family member during sessions.

I’d prefer to have a family member accompany me to the first session to remind me of the symptoms that he has noticed in me, but after the second or third session, I’d prefer to be alone because I would be embarrassed to answer the therapist’s questions in front of my mother or father. (Patient 14)

Moreover, the family members confirmed the importance of the individual sessions, not just for people diagnosed with schizophrenia, but also for themselves. They also expressed a preference for discussing their relatives with the therapist in private.

It is preferable if the family has separate sessions as there are things that are not to be said in the presence of the patient. (Family member 8)

Duration and frequency of sessions

Most participants stated that they preferred flexible CBT sessions for psychosis sessions. Participants indicated that the number of programme sessions should be determined based on the participants’ current state of health and their response to the initial sessions for CBT for psychosis. For family member sessions, the participants expressed a preference for short sessions.

Depending on the person’s condition and level of suffering, some get bored quickly and prefer short sessions, while others need long sessions. (Patient 11)

I suppose that three to six sessions for family members will be sufficient. (Family member 4)

For the duration of the session, most participants preferred sessions that lasted 30–60 minutes. Extending the session beyond that may negatively affect the participants.

I’d prefer one hour for each session to avoid boredom; if the session exceeds an hour, the patient will be unable to concentrate. (Patient 14)

Discussion

This is the first qualitative study in Saudi Arabia to reflect the voices of people diagnosed with schizophrenia and their family members regarding CBT intervention for psychosis and how it can be culturally adapted. Most participants diagnosed with schizophrenia accepted the proposed intervention, and their family members recommended additional content for themselves. Although most participants with schizophrenia accepted the proposed intervention, there were five main areas of adaptation: cultural beliefs and practices, family, communication, delivery, and therapeutic alliance. Owing to the fact that a higher degree of cultural adaptation would make CBT for psychosis more effective, it is important to consider these cultural issues (Degnan et al., 2018). These issues must be incorporated into the development of CBT intervention for psychosis to make it suitable for the participants’ needs and culture in Saudi Arabia (Degnan et al., 2018)

It is important to understand the views of people diagnosed with schizophrenia to identify the distorted beliefs they may hold about the illness and to provide appropriate education to modify such beliefs and reduce associated distress (Li et al., 2017; Naeem et al., 2016). Additionally, beliefs held by people diagnosed with schizophrenia are directly correlated with how they interpret their illness, cope with it, and seek help (Li et al., 2017; Naeem et al., 2016). In this study, some participants diagnosed with schizophrenia were unconvinced by the medical diagnosis of their illness and attributed it to being affected by magic or the evil eye. Thus, they understood their illness in the context of their religion [the Qur’an and the authentic actions and sayings of Prophet Muhammad (peace and blessings be upon him)]. These religious texts explain that magic and the evil eye can have both physical and mental effects. Although most participants diagnosed with schizophrenia and their family members held differing beliefs about the causes of psychosis, a majority of them initially sought help from faith healers. Religion plays a significant role in the lives of people diagnosed with schizophrenia and their families in Saudi Arabia, and has a substantial impact on their beliefs regarding the causes of psychosis and how to manage its symptoms (Alshowkan et al., 2015; Koenig et al., 2014; Wahass and Kent, 1997a; Wahass and Kent, 1997a;). Therefore, it is essential to respect religious beliefs and strategies in the assessment process and integrate CBT for psychosis into people’s religious practices because neglecting that could negatively impact the satisfaction of people diagnosed with schizophrenia with their treatment and their confidence in mental health services.

People diagnosed with schizophrenia and their families do not necessarily engage in religious activities owing to their lack of belief in other biological or social causes of psychosis. In Saudi Arabia, religious beliefs related to schizophrenia can be broadly categorised into two groups (Alattar et al., 2021; Algahtani et al., 2017; Koenig et al., 2014). The first group believes that psychosis and other mental illnesses are caused by magic and the evil eye (Algahtani et al., 2017) based on their interpretation of the Qur’an and the words of Prophet Muhammad. This group is frequently unconvinced that they have psychosis or other mental disorders and believe that only religious activities can help them. Because of this belief, some people diagnosed with schizophrenia in Saudi Arabia have a prolonged untreated duration before seeking help from mental health services (Al Fayez et al., 2017). The second group believes that psychosis is God’s will to teach patience and purify them from sin Alattar et al., 2021; Algahtani et al., 2017; Koenig et al., 2014; Sharif et al., 2020). This group believes that biomedical or social factors may cause psychosis and uses religious activities as a source of strength to manage their symptoms. In addition, this group could seek help from faith healers before seeking help from mental health services because of their belief that any Muslim person should seek healing from God before seeking help from others in the first place (Sharif et al., 2020). This can be done, for example, by going to faith healers to perform Ruqyah Shariah. Therefore, the psychoeducation component should include material that discusses the relationship between magic, the evil eye, and psychosis.

Family members play a pivotal role in the care of individuals diagnosed with schizophrenia in Saudi Arabia. Most patients diagnosed with schizophrenia in this study were accompanied by family members. Some participants with schizophrenia did not want their family members to accompany them to CBT sessions. However, some family members wanted to attend CBT sessions with their relatives because they believed they had the right to know what their relatives were suffering from and what would be offered to them during the CBT sessions. This is a complex and sensitive issue as research indicates that family members in Saudi Arabia can be both a source of support and a cause of difficulty for people diagnosed with schizophrenia (Alshowkan et al., 2015; Koenig et al., 2014). In most situations, families are a significant source of support for people with schizophrenia in the Muslim community, as the majority of people with schizophrenia live with and receive continuous support from their families. Indeed, prior research has shown that families often view this support as a kind of religious obligation that they must fulfil for their relatives (Koenig et al., 2014; Naeem et al., 2019). Furthermore, studies have shown that engaged family members have an important role in CBT for psychosis in the Muslim community (Naeem et al., 2015; Naeem et al., 2019). They play an important role in supporting relatives with schizophrenia with CBT homework as needed and encouraging and bringing them to all CBT sessions (Naeem et al., 2015; Naeem et al., 2019). Despite the benefits of this support, it negatively influences the social and personal lives of some families owing to the increasing burden of care (Sharif et al., 2020). Undoubtedly, the family can be a source of conflict and difficulty for some people diagnosed with schizophrenia in Saudi Arabia, especially when family members are over-protective and over-involved. For example, in over-protective families, some people with schizophrenia can suffer from having their opinions invalidated and being ‘treated like three-year-olds’ by their family (Alshowkan et al., 2015, p. 3). In families characterised by over-involvement, some people with schizophrenia or other mental illnesses report having stayed in in-patient departments for long periods because their families blocked their discharge from the hospital (Al Mousa et al., 2021; Koenig et al., 2014). To exemplify the power that families have over people diagnosed with schizophrenia, some of the primary research studies reviewed in this study obtained only family consent before approaching people with schizophrenia to participate (Al-Yahya, 2014). For CBT programs for psychosis to be successful, there must be a balance in the participation of family members. This balance should consider the fact that the family may be both a source of support and a cause of conflict. Allowing family members to attend CBT sessions for people diagnosed with schizophrenia should be based on obtaining approval from the patients.

Communication was an important component of CBT for psychosis, with respect to both collecting and delivering information to people with schizophrenia and their family members. Most participants in this study were frustrated by the current assessment approach used to collect information about their health conditions and symptoms when they visited a mental health hospital. This method was based on strict questions, and participants with schizophrenia were not given sufficient flexibility to talk about their problems and concerns using their own frames of reference. Therefore, in the assessment and engagement section, the method for gathering information should be based on open-ended questions and semi-structured interviews that give recipients the chance to discuss their problems and issues.

Moreover, participants with schizophrenia and their family members stressed the importance of maintaining the confidentiality of the information they provided. Most participants concurred that the information they shared with their therapist should remain private and should not be disclosed to the other party. The therapist in CBT intervention must keep the information confidential, and this must be made clear to both individuals diagnosed with schizophrenia and their family members at the beginning of the CBT intervention. During the first session, the therapist should inform the participants of the intervention that their information will not be disclosed, will be kept strictly confidential, and will only be breached if they disclose the risk of harm to themselves or others.

In addition, family members emphasised the need to avoid medical terminology, as they and their relatives frequently did not understand it. Therefore, medical terminology should be avoided in CBT interventions for psychosis. Where unavoidable, the therapist should explain the terminology to the participants using simple language and not literal translations of CBT-related terminology for psychosis, as it is one of the major communication barriers in non-Western cultures, such as Pakistan and Saudi Arabia (Algahtani et al., 2019; Naeem et al., 2021)

The findings of our study are similar to prior studies that have been conducted in non-Western countries to develop culturally adapted CBT interventions for psychosis and to studies of culturally adapted CBT interventions for depression and anxiety in the Arab world (Algahtani et al., 2019; Naeem et al., 2016; Li et al., 2017). These studies conducted qualitative interviews with service users, their family members, and healthcare professionals to inform the development of CBT interventions (Algahtani et al., 2019; Li et al., 2017; Naeem et al., 2016). The findings of this study concurred with the ones mentioned above in that people diagnosed with schizophrenia and their family members used the biopsychosocial-spiritual model to understand and manage the illness, and that the spiritual dimension was of central importance to the cultural adaptation of CBT interventions (Algahtani et al., 2019; Li et al., 2017; Naeem et al., 2016). The findings also concurred with the role of the family and the complex dynamics that their role generates, as families may be sources of conflict and support. However, this study differs from other studies on developing culturally adapted CBT interventions for psychosis in non-Western countries in that it highlights the importance of the therapist’s sex during the developmental phase. The importance of the therapist’s sex became apparent when all female and male participants with schizophrenia preferred the interview to be conducted by a female and male researcher, respectively. Furthermore, this study highlighted family members’ needs regarding CBT intervention, whereas previous studies conducted in a non-Western country to develop culturally adapted CBT interventions for psychosis acknowledged the importance of the family in the CBT programme but did not identify the needs of family members (Algahtani et al., 2019; Li et al., 2017; Naeem et al., 2016).

Clinical implications

The results of the study revealed that the religious aspect was important for people diagnosed with schizophrenia and their family members in managing psychosis symptoms. Despite the fact that religious support from faith healers is mentioned in Saudi Arabia’s mental health policy, the role they play, and how they do and should provide support for people diagnosed with schizophrenia is unclear. Furthermore, religion plays an important role for Muslims in Western societies to understand and manage their mental illnesses (Naeem et al., 2019; Rathod et al., 2010). Consequently, the religious aspect should be an integral part of the engagement and assessment phase of CBT in Saudi Arabia and for Muslims in Western countries to determine whether patients explain their mental illness in terms of religion. Therefore, the assessment phase of CBT should be based on the biopsychosocial-spiritual model in Saudi Arabia and for Muslims in Western countries.

Religion is regarded as an important source of support for people diagnosed with schizophrenia in Saudi Arabia and Muslim societies, both at home and abroad. When dealing with the psychotic symptom phase of CBT, religious strategies, such as listening to the Qur’an, performing Ruqyah Shariah, or the availability of faith healers in mental health services, should be incorporated into the treatment plan. The absence of these elements from the treatment plan is likely to lead to people diagnosed schizophrenia seeking treatment outside mental health services, making them vulnerable to predatory individuals masquerading as faith healers, as indicated by the study’s findings.

Moreover, the results showed that the use of medical terminology had a negative impact as some participants did not understand what these terms meant. Consequently, when discussing the condition with people diagnosed with schizophrenia and their family members, healthcare professionals should avoid using medical terminology and instead explain it in an easy and understandable language.

In Saudi Arabia, there is a high level of stigma associated with mental illness, and many people avoid disclosing their mental illness or that of relatives outside their family (Alateeq et al., 2018; Noorwali et al., 2022; Sharif et al., 2020). This is because many Saudis consider mental health services to be for ‘crazy people’ (Algahtani et al., 2017). This perspective negatively impacts people with mental illnesses and their families in Saudi Arabia, making it difficult to find work or get married (Al Mousa et al., 2021; Alshowkan et al., 2015). Therefore, CBT interventions should include individual sessions to encourage people diagnosed with schizophrenia and their family members to participate in CBT.

Although psychological therapy services are provided free of charge in all government mental health hospitals in Saudi Arabia, most participants preferred brief CBT sessions. This was due to a variety of factors, including seeking the shortest path to recovery and the cost of transportation, particularly for those living in urban areas where mental health services are unavailable (Algahtani et al., 2019). Consequently, the course of sessions for CBT for psychosis should be short, with booster sessions available for patients whose cases require them.

Finally, the therapist’s sex was a factor that could hinder the therapeutic relationship. The availability of therapists of both sexes is vital to motivate people diagnosed with schizophrenia and their family members to participate in CBT interventions for psychosis in Saudi Arabia. Table 4 summarises the recommendations for CBT therapists for psychosis interventions in Saudi Arabia and Muslim societies.

Table 4. Recommendation for the therapist

Future research

The next stage of this study will be to apply for funding and continue to use the Medical Research Council framework, with an emphasis on the intervention modelling phase (Skivington et al., 2021). Further research is required to determine the role of faith healers in mental health services in Saudi Arabia and the strategies of support they offer to people diagnosed with schizophrenia to integrate these approaches. Moreover, further studies with mental healthcare professionals are required to explore barriers and facilitators in implementing CBT interventions for psychosis. Following this stage, a consensus group meeting will be conducted with stakeholders to identify the final culturally adapted CBT components for psychosis and develop manual training for mental healthcare practitioners. Once the CBT intervention is developed, the next stage would be feasibility evaluation by testing its effectiveness.

Limitations

The main limitation of this study is that the sample was drawn from only one mental health hospital in Saudi Arabia; therefore, the findings may not be generalisable to other Saudi mental health services. Furthermore, this study did not develop research questions based on a specific framework for the cultural adaptation of CBT but rather on a list of factors in the framework for adaptation for psychosocial interventions for schizophrenia REF. Furthermore, the study did not investigate whether the CBT terminology translations were culturally appropriate for the participants.

Conclusion

The results showed that the proposed CBT intervention for psychosis was accepted by most participants, and four main cultural issues were revealed: cultural beliefs and practices, family, communication delivery, and therapeutic alliance, which must be incorporated into the development of CBT intervention for psychosis to make it suitable for people’s needs and the culture of Saudi Arabia.