1 INTRODUCTION

Sibling relationships - outlast marriages, survive the death of parents, resurface after quarrels that would sink any friendship. They flourish in a thousand incarnations of closeness and distance, warmth, loyalty and distrust. Erica E. Goode

This paper begins by describing the term ‘caregiving’, acknowledging those who undertake a caring role. Subsequently, the term ‘psychosis’ and experiences along the psychosis spectrum will be introduced. The authors consider cultural differences both within populations and between countries when reviewing the literature on psychosis. A summary of the key findings within psychosis literature will provide context for studying siblings of people with experiences of psychosis (SOPEP). Limitations from an earlier review will be explored, followed by the research aims of the current study.

1.1 Caregiving

A carer is someone who provides support to an individual, which includes family members living with or providing support from a distance (NHS, 2017). Caring for someone experiencing mental health difficulties may involve practical help, personal care and/or emotional support (McCann et al., 2011). Providing support may impact carers' emotionally, physically, socially and/or financially, both positively and negatively (Shiraishi & Reilly, 2019). The level of multifaceted strain perceived by caregivers over time is known as caregiver burden (Liu et al., 2020). In this paper, siblings have been referred to as carers and providing caregiving, yet it is recognised some may not consider themselves a carer (BPS, 2021).

1.2 Psychosis

Psychosis conditions affect more than 20 million people worldwide (James et al., 2018), emerging typically in adolescence and early adulthood (McClellan, 2018). The DSM-5 classification for primary psychotic disorders emphasises that these conditions occur along a spectrum, with schizoid (personality) disorder and schizophrenia defining its mild and severe ends, respectively (Arciniegas, 2015). More recently, there has been a focus in the literature on prevention and early intervention, moving from chronic conditions (e.g., schizophrenia; Severe Mental Illness) to early psychosis experiences (e.g., First Episode Psychosis, FEP; the At-Risk Mental State, ARMS). The term ‘ARMS’ describes a state that confers a high but not inevitable risk of developing a psychotic condition (McGorry & Singh, 1995).

In the process of deinstitutionalisation, the focus of rehabilitation and treatment has shifted to the community, relying on families to care for their ill family member (Kritzinger et al., 2011). A high proportion of people with experiences of psychosis live at home and are supported by their families (Izon et al., 2019). The literature recommends family interventions for people experiencing symptoms of psychosis (Claxton et al., 2017; Varghese et al., 2020). Benefits may include reduced relapse and re-hospitalisation rates and reduced levels of criticism, hostility and/or emotional over-involvement in family members (Camacho-Gomez & Castellvi, 2020; Claxton et al., 2017). Families themselves gain a sense of empowerment and enhanced stigma coping skills and can facilitate patient engagement (Ben-David et al., 2019; Izon et al., 2020).

1.3 Cultural differences

The literature exploring family members' experiences originate predominantly from western cultures, with few studies including Black and Minority Ethnic populations, who are overrepresented in rates of psychosis in many regions (Edge et al., 2016). Cultural differences may exist and influence family members' perceptions and management of psychosis, and caregiving behaviours. Considering diverse cultural traditions and values is essential to understanding families' experiences and providing acceptable and effective culturally adapted interventions (Rathod et al., 2018).

Culture decides which behaviours are acceptable and open to criticism, with variations in levels of affection and concern. Explanatory models of psychosis may include supernatural beliefs about the aetiology of the illness, seeing mental illness through a spiritual–social model, rather than biomedical. In certain cultures, people with symptoms of psychosis and their families may experience social exclusion from employment (economic exclusion), denied legal rights to vote, marry or own land (political exclusion), and be ostracised (United Nations General Assembly, 2017).

The authors recognise caregiving may be more acceptable from certain relationship types in certain cultures; therefore, these findings may vary between interpersonal relationships as well as cultures. Dilworth-Anderson's 20-year narrative review (Dilworth-Anderson et al., 2002) highlights White caregivers often cared for a spouse, whereas African American caregivers often cared for siblings, friends or extended family members. Research suggests gender differences exist, with more females taking on the caregiving role (Caqueo-Urízar et al., 2014). However, in some cultures, women provide personal care and emotional support, whilst men provide equal caregiving but focussing on financial support and transportation (Delgado & Tennstedt, 1997). In some cultures, sociological explanations emphasise the societal and cultural expectations of women to adopt the role of a caregiver. For example, Confucianism places value on women in some cultures assuming caregiver roles, regardless of other responsibilities such as having their own families (Hsiao et al., 2006).

1.4 Siblings of people with experiences of psychosis (SOPEP)

The experiences of people with psychosis may impact the whole family through experiences of emotional and economic stress and caregiver burden (Wang et al., 2017); however, research and treatment typically involve spouses and parents (Onwumere et al., 2020). The sibling relationship often provides reciprocal friendship and emotional and practical support (Bank & Kahn, 2003). Some SOPEP may have more knowledge of their sibling's difficulties than their parents (Dyregrov & Dyregrov, 2005) and take on caregiving support (BPS, 2021). In some cultures, SOPEP may be obligated to provide care for an ‘ill’ sibling and socialised to the caretaking role, as well as act as sources of support to their parents (Amaresha et al., 2014; Bowman et al., 2017). Quantitative research and the literature exploring the experiences of SOPEP and their relationship are limited (Bowman et al., 2014; Plessis et al., 2020). Psychosis-related symptoms and behaviours observed by SOPEP have been associated with psychological distress for SOPEP and conflict in family relationships (Lively et al., 2004; Plessis et al., 2020). A history of exhibiting physical violence, aggression and suicidal behaviours in individuals with FEP resulted in higher caregiver burden and lower quality of life for siblings (Bowman et al., 2014, 2017). Siblings may make sacrifices within their personal lifestyle (e.g., time with their spouse and children) to facilitate providing long-term care (Bowman et al., 2017). SOPEP providing care may encounter a wide range of complex, layered emotions, experiences of stigma, increased distress and burden (Bowman et al., 2014, 2017). However, they may experience positive emotions from providing support and companionship (Bowman et al., 2017).

Several theories conceptualise the impact of mental distress on siblings. Family systems theory asserts that family members are part of a symbiotic, dynamic family system, whereby the behaviour of each member has the capability to impact others (Minuchin, 1988). This is particularly relevant, as diagnosis of psychosis is often in late adolescence and early adulthood. Disruption to relationships for siblings during this stage of life may have significant implications, specifically to personality development, identity formation and social support (Bowman et al., 2014). For example, a lack of attention and affection perceived by siblings may result in greater empathy or withdrawal behaviours (Fleary & Heffer, 2013). SOPEP who experience difficulties in psychosocial functioning may be at high risk of developing psychosis themselves (Yung et al., 2005) and vulnerable to developing mental health problems (Bowman et al., 2014).

To understand the psychosocial needs of SOPEP and guide further practice and research, Amaresha et al. (2014) conducted a systematic descriptive review. Their review included seven studies (four qualitative; two quantitative and one mixed method study) and found that SOPEP have specific needs. The authors highlight SOPEP's desire for support from professionals for both their own psychosocial needs, as well as information of their sibling's difficulties, illness management and rehabilitation. A more up-to-date review incorporating studies across diverse cultures and across the psychosis umbrella (i.e., including ARMS and FEP) would help to inform services how best to support SOPEP's stressors and psychosocial needs across cultures.

1.5 Current study

This study focusses on qualitative studies, due to the richness and number of qualitative research papers across cultures that are identified in a relatively novel area. This narrative systematic review enabled a consolidation of descriptive themes to determine the extent to which services provide support to siblings and guide further practice and quality research with this population. With this background, we systematically reviewed studies which explored the psychosocial stressors of SOPEP. Psychosocial stressors were defined as perceived personal and social resources, including appraisals of care demands, coping styles and social support (Ownsworth & Karlsson, 2022).

1.6 Aims

1. Identify studies focusing on the psychosocial stressors of SOPEP as derived from qualitative studies.
2. Provide a narrative synthesis of the psychosocial stressors of SOPEP to date and assess the quality of the literature.
3. Explore culturally specific psychosocial family and sibling-centred support.

2 METHODS

2.1 Search strategy

This review was conducted in line with PRISMA guidelines for reporting systematic reviews (Moher et al., 2009). The published review protocol can be found on PROSPERO https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=297598.

An electronic advanced search was carried out on six databases PsycINFO, EMBASE, CINAHAL, MEDLINE, PubMed and Web of Science using search below. To reduce duplication from Amaresha et al. (2014) review and explore novel research, these searches were limited from October 2013 to February 2023, human and English language. The references in each included paper were reviewed through forwards and backwards searching, for extra relevant publications not identified in the initial electronic search.

The authors used the following search terms to be open and inclusive to any qualitative research involving a population of siblings of someone with experiences of psychosis. The authors were aware that this may result in a greater number of initial articles that required full-text searches, however, felt that this was important due to the breadth of the area. The search terms were psychosis OR psychot* OR schizo* OR early intervention in psychosis OR FEP OR first-episode psychosis OR first episode psychosis OR first episode of psychosis OR severe mental illness OR severe mental disorder AND Sibling* OR brother* OR sister* AND qualitative OR ethnograph* OR phenomen* OR ethnograph* OR grounded theory OR qualitative valid* OR purposive sampl* OR observational method* OR content analys* OR thematic analys* OR constant comparative OR field stud* OR theoretical sampl* OR discourse analys* OR focus group* OR lived experience* OR life experience* OR narrative analysis OR interview*.

2.2 Inclusion criteria

Eligible studies were original research papers, published in October 2013, in peer-reviewed journals in English. Qualitative empirical research studies and mixed-methodological studies that included a qualitative element were included. Studies involving people with ‘severe mental illness’ were required to state the diagnoses of participants and that over 50% of the sample had a psychosis cluster diagnosis. Eligible studies focused on stressors of SOPEP, which could be from the perspectives of either the sibling, another family member, healthcare professionals or the patient. Siblings of all ages and those cohabiting or not cohabiting with their siblings were eligible for inclusion.

2.3 Exclusion criteria

Studies exploring genetics and pathophysiological risk were beyond the scope of the review. All other study designs were excluded (e.g., quantitative studies and grey literature).

2.4 Study selection and data extraction

The article selection process is illustrated in Figure 1. The initial search retrieved 2438 citations. Duplicate results were removed using Endnote before titles, and abstracts were screened for inclusion. Full-text articles were obtained for all potentially eligible studies, which were then reviewed according to eligibility criteria. The first author (insert initials) assessed study eligibility with queries resolved through discussion and consensus with additional review team member (insert initials). A second rater (insert initials) assessed the reliability of the selection process by reviewing 30% of abstracts and 25% of full-text papers. Estimates of inter-rater reliability showed a high level of agreement at screening (κ = 0.84, p < 0.001) and full-text stages (κ = 1.00, p < 0.001; Landis & Koch, 1977). Insert initials screened 41 full texts of the remaining articles; 19 were excluded due to the publication year prior to October 2013 (n = 3), the study design (n = 8), not focussing on a population of people with psychosis cluster diagnoses (n = 5) or the focus not looking at the psychosocial needs of siblings (n = 3).

The first author contacted authors from the papers identified to gain additional information. Three additional paper was identified from reviewing citations. Twenty-two papers met full inclusion criteria, and a data extraction tool was developed (see Table 1) to record: (1) Study characteristics; (2) Design; (3) Sample demographics for study participants; (4) Sample demographics for SOPEP; (5) Sample demographics for patients; (6) Study aims, key findings and implications. Of the extracted papers, 30% were reviewed by both the first author and second rater to assess inter-rater reliability, with 90% agreement, and any discrepancies resolved through discussion.

2.5 Quality assessment tool

Assessment of methodological quality was conducted by the first author using the Critical Appraisal Skills Programme (CASP; CASP International Network, 2013) qualitative checklist. This tool consists of 10 questions that can be used to critically assess quality across qualitative methodologies. There is a general lack of consensus regarding assessing quality in qualitative research (Leung, 2015). Given the diverse forms of qualitative research from diverse cultures and countries, the authors of the study did not exclude studies based on quality. Of the included papers, 30% were reviewed by both the first author and second rater to assess inter-rater reliability, with 97.1% agreement reached across all domain ratings (see Table 2).

2.6 Narrative synthesis

The data were summarised and analysed using narrative synthesis to ‘tell the story’ of the findings from the included studies (Popay et al., 2006). The narrative synthesis approach involved developing a preliminary synthesis and exploring relationships within and between studies to draw out conclusions (Popay et al., 2006). The themes and extracts from the included papers were re-read several times by the first author. During the full-text screening and extraction processes, we identified multiple studies that commented and reported on key areas. Using an inductive, iterative process, initial codes were created and then condensed and categorised until patterns and final themes emerged. This approach was used to combine and report the findings relating to the psychosocial stressors, needs, barriers and facilitators of caregiving for SOPEP. The identification of codes, and subsequently, the development of final themes, was discussed and reviewed in supervision. Relevant quotes were chosen to reflect key points within each theme.

2.7 Reflexivity

When conducting qualitative research, reflexivity is important in understanding the influence of researchers' backgrounds and perspectives (Malterud, 2001). The first author's own experiences of family life, a positive sibling relationship and prior research with families of ARMS individuals, may have influenced her reasons for engaging and understanding siblings' experiences. For example, coming from a White British religious lens may have influenced the first author's perspective of carer burden, cultural and gender norms. Supervision was important to maintain an objective research position and ensure that themes were grounded within the data.

3 RESULTS

3.1 Overview

The studies included were conducted within Europe (n = 3), Asia (n = 9), Americas (n = 5), Africa (n = 2) and the Middle East (n = 3). They explored the psychosocial stressors of SOPEP with an ARMS (n = 1), FEP (n = 3) and diagnosis of schizophrenia or psychotic disorder (n = 18). Of the 18 studies involving patients with a diagnosis of schizophrenia, seven studies involved inpatient populations (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Day & Petalas, 2020; Liu & Zhang, 2019; Park & Lee, 2017; Seeman, 2013; Yang et al., 2017). Study participants were only siblings (n = 10), relatives (i.e., parents, partners, siblings, grandparents; n = 7), patients themselves (n = 1) and healthcare professionals (n = 2). One study included both patients and relatives in their sample (Paul & Nadkarni, 2017), and another included both relatives and healthcare professionals (Al Sawafi et al., 2022).

Most studies involved individual interviews (n = 18). One study involved interviews and observations (Napa et al., 2017), one interviews and focus groups (Paul & Nadkarni, 2017), one open-ended questions on a questionnaire (Bishop & Greeff, 2015) and another involved observation of clinical notes (Seeman, 2013). Qualitative data analysis varied, grounded theory (n = 6), thematic analysis (n = 3), IPA (n = 3), framework analysis (n = 2), content analysis (n = 3), descriptive phenomenological investigations (n = 3) and general inductive approach (n = 2).

Of the 22 studies, most siblings involved were female (n = 10). Six studies did not mention the genders of the siblings, and two studies had an even split of male/female participants. Siblings were typically aged 25–39 years (n = 11). One study looked at young siblings (Liegghio, 2017), and one explored siblings who ranged from 30 to 65 years (Yang et al., 2017). Seven studies did not mention the ages of siblings. Additional details were sometimes mentioned about siblings, for example, whether they lived with the patient (Amaresha et al., 2015, 2019; Dodge & Smith, 2019; Udgiri et al., 2017), were the primary caregiver (Amaresha et al., 2015, 2019) and the birth order (Dodge & Smith, 2019; Kovacs et al., 2019; Liegghio, 2017). See Table 1 for summary details.

In addition, three groups reuse their data to publish multiple papers (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Amaresha et al., 2015, 2019; Graves et al., 2020, 2021). The weight of these papers has been taken into consideration in the result and discussion.

3.2 Quality assessment tool

The received studies provided clear aims; they were explicit about how data was collected and chose appropriate qualitative methodology. However, some were not rigorous with data analysis (see Table 2, criteria 8) and did not critically consider the researcher's own role, influence and potential bias (see Table 2, criteria 6). All studies were included as deemed valuable research to existing literature, with findings important to consider in current practice and policy.

3.3 Facilitators and barriers to providing care and supporting SOPEP

Using narrative synthesis, six key components were identified as contributing to SOPEP's psychosocial stressors and facilitating or hindering their intentions, behaviours and experiences in providing care. These were (1) SOPEP's beliefs about psychosis, (2) caregiving beliefs, (3) family and cultural values, (4) personality traits, (5) pragmatic challenges and (6) access to resources. Figure 2 shows the psychosocial stressors that may help (bold) or hinder (italic) SOPEP intentions and behaviours in caregiving. The model includes influencing factors from an individual and social level, as well as physical and macro-level environments.

Influencing psychological and social factors may contribute to the development or aggravation of existing mental health difficulties for SOPEP. These stressors may impact SOPEP's relationships with other family members and facilitate or hinder them from providing care or support towards their sibling (see Figure 2). Examples of psychological stressors for SOPEP include witnessing the behaviours and symptoms of psychosis, or behaviours of violence, aggression and suicidal ideation. SOPEP may experience heightened conflict in family relationships and/or feel their needs are not being fully met by their primary caregivers. SOPEP may experience themselves a wide range of complex, layered emotions, impacting on their own mental health. Social stressors for SOPEP can include reduced access to resources, for example, financial burden on the family, reduced education support, limited access to family, community and social support. Psychological and social stressors can interact on SOPEP own psychological well-being, as well as their sibling and family relationships.

3.3.1 Beliefs about psychosis

Social issues such as public stigma towards people with experiences of psychosis may result in negative stereotypes (e.g., aggressive and violent) (Liegghio, 2017; Napa et al., 2017) and discrimination (e.g., unable to own property) (Liegghio, 2017; Paul & Nadkarni, 2017). Negative perceptions of psychosis impacted on SOPEP feeling embarrassed, uncomfortable (Al Sawafi et al., 2022; Amaresha et al., 2015, 2019; Liegghio, 2017; Young & Flannigan, 2021) and isolated from others (Amaresha et al., 2019; Graves et al., 2021; Liegghio, 2017).

One of the neighbours suggested we move out of the neighbourhood … it was after (sibling) had an episode. (Liegghio, 2017)

Negative emotional experiences by SOPEP may be attributed towards their beliefs of their sibling's behaviours being intentional. These criticisms may elicit jealousy when combined with attention focussed on the patient and the SOPEP's needs perceived as less important (Seeman, 2013; Izon et al., 2021).

Yes, he has an illness … but that doesn't mean that he cannot do anything. (Amaresha et al., 2019)

He is sometimes embarrassing you, us as a family. And then you feel those … and others were laughing. It was like he is doing it for fun. (Young & Flannigan, 2021)

Dependent on SOPEP's personal and social identity, their experiences of having an ‘ill’ sibling may vary. This may have an impact for SOPEP during adolescence and early adulthood on the sibling relationship (Graves et al., 2021), relationships with their parents (e.g., feeling abandoned) and their psychosocial functioning. SOPEP who experienced changes within family relationships (i.e., family conflict, involvement in caregiving and less attention/time with parents) may lack the knowledge and understanding of the condition (Al Sawafi et al., 2022; Amaresha et al., 2015; Izon et al., 2021; Liegghio, 2017; Napa et al., 2017; Sin et al., 2017).

We need to know some information such as what Is the nature of the illness? Why does it occur? Why is my brother behaving like this? (Amaresha et al., 2015)

3.3.2 Caregiving beliefs

SOPEP play a key role in caregiving with 17 studies mentioning siblings having a responsibility for the patient, and their families. SOPEP may be socialised to the caretaking role early in life (due to, e.g., parental ill health and bereavement) and expected to care for their ‘ill’ sibling. SOPEP may recognise themselves as adopting a ‘parenting role’ (Graves et al., 2021; Izon et al., 2021), over their lifetime (Day & Petalas, 2020; Graves et al., 2021; Kovacs et al., 2019; Yang et al., 2017). However, some may choose not to engage and avoid caregiving responsibilities and distance themselves from their sibling (Seeman, 2013).

Up to what age are they our sibling? Our responsibility? Until when? Until age 40? Until age 50? Until age 60? (Kovacs et al., 2019)

Studies highlighted the diverse forms of care SOPEP provided: Physical care included managing medication, appointments, providing transport and housing (Amaresha et al., 2019; Napa et al., 2017; Purba, 2017; Udgiri et al., 2017; Yang et al., 2017); emotional support included listening, providing advice and empathy (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Liu & Zhang, 2019); social support included providing companionship, social interactions and access to activities (Al-Sawafi et al., 2021; Bishop & Greeff, 2015; Dodge & Smith, 2019; Napa et al., 2017; Seeman, 2013); and finally, financial support included transport, bills and disturbances in SOPEP's own occupation (Al-Sawafi et al., 2021; Amaresha et al., 2015, 2019; Purba, 2017; Udgiri et al., 2017; Yang et al., 2017; Young & Flannigan, 2021). Five studies did not mention specific psychosocial demands (Graves et al., 2020, 2021; Izon et al., 2021; Purba, 2017; Sin et al., 2017).

She's, my sister! It is normal for family members to help each other when they are ill. (Liu & Zhang, 2019)

3.3.3 Family and cultural values

In some cultures, psychosis was described as ‘bizarre’ (Graves et al., 2021) or ‘picchi’, ‘hucchu’, ‘madness’ (Amaresha et al., 2015, 2019; Young & Flannigan, 2021) and the result of ‘vamachara’ (black magic) or a ‘Jinn’ (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Amaresha et al., 2015, 2019; Young & Flannigan, 2021) or a message from God (Park & Lee, 2017). Help-seeking behaviours included accessing traditional healers prior to mental health services (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Amaresha et al., 2015, 2019; Young & Flannigan, 2021).

We did not know where to go initially … some people told us to take him to temples and person poojas (religious rituals) and some advised seeking help from black magicians. (Amaresha et al., 2019)

Beliefs about caregiving and mental illness may be unique to culture (Amaresha et al., 2015, 2019). It is important to note that the majority of papers included in this review failed to report the researchers' own stances, which may be in line or conflicting with participants' family and cultural values. Variations in caregiving may be dependent on gender, geographic proximity, socioeconomics and other responsibilities of SOPEP (e.g., responsibilities for other children or aging relatives). In some cultures, families provide collectivist support to patients, and demands may be put on siblings rather than parents with expectations of their involvement in caregiving (Napa et al., 2017; Seeman, 2013).

My elder brother and I work together. He said that its very important since I'm in Taiwan and cannot burn out caring for family members. My elder brother works in America and earns money to pay the bills for our ill brother, our parents, and their foreign caregiver. (Yang et al., 2017)

Some SOPEP may avoid caregiving because of the perceived burden and stigma (Day & Petalas, 2020; Graves et al., 2021; Kovacs et al., 2019; Seeman, 2013; Yang et al., 2017) and/or family values (Graves et al., 2020; Kovacs et al., 2019). Stigma and discrimination may impede or delay help-seeking behaviours, further exacerbating symptoms and functioning (Amaresha et al., 2019), or result in families utilising institutions to avoid family burden (Park & Lee, 2017; Yang et al., 2017). SOPEP may rely on their parents to sustain the caregiving role (Dodge & Smith, 2019; Park & Lee, 2017).

When my parents die … I think (caregiving) would fall to me. (Dodge & Smith, 2019)

3.3.4 Personality traits

SOPEP expressed compassion, empathy and patience towards their sibling and wanting to provide a calming presence when socialising together (Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Amaresha et al., 2019; Bishop & Greeff, 2015; Day & Petalas, 2020; Graves et al., 2020; Liu & Zhang, 2019; Park & Lee, 2017; Young & Flannigan, 2021). SOPEP desired patience when communicating with their siblings, mostly when they felt exhausted or frustrated by the sibling's behaviours (Amaresha et al., 2015; Kovacs et al., 2019).

I like to just chill with him and take my guitar … his illness brought me close to him as his brother, I always want to be better! (Young & Flannigan, 2021)

3.3.5 Pragmatic challenges

Most studies described the care demands for SOPEP. Some SOPEP described caregiving as stressful, burdensome and associated negative impacts (Amaresha et al., 2015, 2019; Kovacs et al., 2019; Liegghio, 2017; Park & Lee, 2017; Paul & Nadkarni, 2017; Seeman, 2013; Young & Flannigan, 2021). SOPEP discuss the ‘demands for money’ (Seeman, 2013) and financial burden from hospitalisation fees and medications (Amaresha et al., 2015; Park & Lee, 2017; Yang et al., 2017), whilst others had paid for traditional healers (Al-Sawafi et al., 2021; Amaresha et al., 2019).

I have no idea how to pay the hospitalisation fee. (Yang et al., 2017)

SOPEP in employment or education experienced pragmatic challenges in supporting their sibling to appointments and involvement in their care (Amaresha et al., 2019, 2015; Liegghio, 2017; Sin et al., 2015).

I also decided to leave the school. Oh man, sh*t! Everything is on me! … It's a burden. (Young & Flannigan, 2021)

SOPEP may have additional responsibilities (i.e., families and young children) that create challenges in socialising and involvement in their sibling's care (Amaresha et al., 2015; Yang et al., 2017).

These days I have a lot of pressures both personally and professionally … not able to spend time with my fiancé and friends. (Amaresha et al., 2015)

3.3.6 Access to resources

The need for additional resources for SOPEP was mentioned across all studies. Most studies discuss wanting emotional support within families or peer support around topics including avoidance, grief, stigma, burden and long-term caregiving responsibility. Over half of the studies discuss SOPEP need for knowledge and psychoeducation about topics including symptoms, aetiology, social welfare and legal and financial support.

I would like to know what psychosis is all about? What has caused this illness? How long will it take to cure? (Udgiri et al., 2017)

Five studies (Al Sawafi et al., 2022; Amaresha et al., 2015; Dodge & Smith, 2019; Graves et al., 2020; Paul & Nadkarni, 2017) discuss practical skills and techniques for SOPEP in managing symptoms. Four studies (Day & Petalas, 2020; Liu & Zhang, 2019; Seeman, 2013; Sin et al., 2017) discuss additional resources for healthcare professionals (e.g., culturally valued family intervention training and records of family networks).

Over half of the studies included in the review discuss culturally adapted interventions for SOPEP, due to unique concerns and beliefs about caregiving and possible conflicts with cultural practice. These studies discuss how programs may need to be adapted to account for the differences in language, stigma and involvement of others (e.g., extended family, shamans and monks).

It is important to use simplified language. (Al Sawafi et al., 2022)

All the studies included in this review discuss strategies and programs needed to support SOPEP. The authors grouped resources in Table 3. These were found to help siblings feel less stressed, isolated and confused about the psychosocial demands as a SOPEP and more positive and knowledgeable in how to support themselves and their sibling. These may need to be adapted to the SOPEP's needs depending on their personal and social identity, patient's stage of psychosis and cultural expectations and beliefs of caregiving.

4 DISCUSSION

4.1 Summary of findings

This review explored the psychosocial stressors and needs of SOPEP derived from qualitative studies. This narrative synthesis included studies outside western communities to explore SOPEP-specific needs across diverse cultures and understand culturally specific psychosocial sibling-centred support. Most studies included provided clear details about the research, yet the researcher's own role was not often critically considered. All the studies included were deemed valuable research additions to existing literature, with findings important to consider in current practice and policy.

Psychological and social factors can interact with one another and impact on SOPEP's own mental health, as well as their sibling and family relationships. For example, primary caregivers may attend to the needs of their child with experiences of psychosis, which may result in the SOPEP experiencing a lack of affection, feeling isolated and jealous and lead to further withdrawal (Amaresha et al., 2019; Izon et al., 2021; Seeman, 2013). In line with family systems theory (Kerr, 2019; Minuchin, 1988), families are not understood in isolation and one person's actions can shift the equilibrium within a family. Social and psychological factors are dynamic and can become stressors, for example, financial resources or social support may reduce or increase and impact the whole family system. Therefore, the needs of SOPEP may vary depending on influencing factors (i.e., individual and social factors and the physical and macro-level environment; see Figure 2). However, the involvement and education to increase SOPEP's knowledge and provide them with support and resources (see Table 3) is important in facilitating caregiving, providing SOPEP's coping strategies and acknowledging their own psychosocial challenges and any changes within their family relationships.

SOPEP play a key role in caregiving for their sibling and supporting their parents. This may result in SOPEP experiencing family tension or impact on their socio-occupational functioning. Understandably, SOPEP may encounter a wide range of emotions and experiences, including guilt, shame, anger and increased psychological distress. The varying experiences of siblings may be understood by culture that shapes the values and perspectives of different communities. For example, some SOPEP may hold negative attitudes towards caregiving and perceive burden, negative impacts and societal stigma. This may help services to understand why some parents shield patient's experiences from SOPEP, whilst others are involved with care from an early age, and some SOPEP make sacrifices within their personal lifestyle (e.g., family and career), whilst others distance themselves from their sibling.

Over half of the studies in this review discuss SOPEP need for knowledge and psychoeducation about topics including symptoms, aetiology, social welfare and legal and financial support. Of the four studies in this review exploring SOPEP at FEP and ARMS, all discuss the need to involve, support and share information with SOPEP, with three studies commenting on SOPEP dearth of information and understanding. Internet-based information and peer support intervention was found useful and acceptable to SOPEP in the UK (Sin et al., 2015). Providing SOPEP access to digital psychoeducation resources coupled with sibling peer support may benefit some families, although some may need additional support regarding social welfare and legal and financial advice with variations depending on one's culture, language and localisation.

This review builds on the existing literature, highlighting the need for services to incorporate cultural adaptations. SOPEP beliefs and attitudes towards caregiving and mental health may be impacted by individual, social and macro-level factors and their physical environment (see Figure 2). This review recognises the psychosocial stressors to caregiving and facilitators and barriers for SOPEP (e.g., resources and pragmatic challenges). Mental health services may wish to explore these six areas: SOPEP's beliefs about psychosis and caregiving, their family and cultural values, their personality traits (i.e., empathic, caring and patient), pragmatic challenges and access to resources (see Table 3) when engaging with SOPEP to understand their caregiving demands and family cultural beliefs towards caregiving.

4.2 Clinical implications

As symptoms of psychosis emerge this may impact the whole family (Wang et al., 2017), with siblings experiencing the cumulative effects of developmental challenges, combined with family disruption (Graves et al., 2020). The sibling bond is often the longest familial relationship in one's life (Day & Petalas, 2020). Services may wish to consider additional support for SOPEP to feel less stressed, isolated and confused about the psychosocial caregiving demands and more positive and knowledgeable in how to support themselves and their sibling. Most studies in this review discuss emotional support for SOPEP, who may have mixed feelings and have questions about long-term caregiving responsibility. SOPEP involvement in family intervention or peer support may provide them with a space to disclose difficult emotions towards their sibling or adopting a carer role and explore ways to facilitate caregiving.

Outdated language and cultural insensitivity may create barriers to minority groups engaging with mental health services. Understanding SOPEP's experiences and providing acceptable and effective culturally adapted interventions may facilitate their intentions and behaviours in providing care (see Figure 2). Tailored interventions may include exploring cultural values and family beliefs about psychosis and how they respond as a family or community. This may be crucial with some SOPEP from collectivist cultures involved in caregiving, some providing all care, whilst others may not be involved with expectations placed on parents (Napa et al., 2017; Seeman, 2013).

Exploring the beliefs behind caregiving and how SOPEP manage their own feelings and responses to the person may vary dependent values, social stigma and experiences of discrimination. For example, some SOPEP may have additional responsibilities (e.g., their own family and children) but are culturally expected to care for their siblings (Amaresha et al., 2015; Yang et al., 2017). Adapting services to SOPEP across the world may include clinicians providing psychoeducation about psychosis using ‘simplified language’ and recognising SOPEP's beliefs (i.e., ‘vamachara’ or a ‘Jinn’; Al-Sawafi et al., 2021; Al Sawafi et al., 2022; Amaresha et al., 2015, 2019; Young & Flannigan, 2021) or a message from God (Park & Lee, 2017). Services to recognise negative or positive emotional responses may be a result of the type of caregiving, resources personal and identity factors (i.e., gender, geographic proximity and socioeconomics). Some SOPEP may need signposting to financial support as a carer if applicable to their culture. Clinicians should look to build trust with SOPEP from a non-judgmental position, learning from them and identifying their strengths and resources. Services may look to build connections with the community members (e.g., religious leaders, shamans, monks and traditional healers) to facilitate SOPEP's expectations of the caregiving role through religious support or spiritual sustenance, as well as reduce stigma and burden and promote mental health literacy.

4.3 Recommendations for policymakers

• The development of a referral pathway that provides SOPEP access to their own support (i.e., knowledge, financial advice and mental health support; see Table 3).
• SOPEP to be routinely offered psychological therapies within family intervention.
• Services to explore the facilitators and barriers for SOPEP to providing care and support (i.e., Figure 2, six areas).

4.4 Limitations and future research

This review was the first to synthesise the psychosocial stressors of SOPEP across diverse cultures, whilst exploring the quality of the studies. The authors included all the studies that met the inclusion criteria, irrelevant of quality. Justification was that the diverse forms of qualitative studies from varying cultures were deemed valuable research to existing literature, with findings important to consider in current practice and policy.

The review had certain limitations. The authors utilised the reported findings of the included studies, rather than accessing raw qualitative data. The sample sizes within the studies were relatively small, and the authors included studies with mixed samples of relatives (i.e., parents, partners, siblings and grandparents). Furthermore, the definition of ‘sibling’, included step-siblings, half-siblings and uncles (Young & Flannigan, 2021). Combining samples from both the socially constructed phenomena of ‘siblings’ and biologically defined ‘siblings’ limits internal validity of the review. However, integrating the findings and acknowledging how SOPEP may vary across cultures and communities provides external validity. This may help to create culturally adaptable and acceptable interventions for SOPEP (Edge et al., 2018), as well as guide services to providing meaningful resources that meet the psychosocial needs of SOPEP and facilitate caregiving.

Future research exploring the psychosocial needs of SOPEP should give voice to siblings across more cultures, exploring the needs of younger and elder siblings and adopting rigorous qualitative and mixed methodologies. Exploring gender differences of SOPEP, their caregiving roles and psychosocial needs may help services to provide more acceptable support and engage SOPEP and families with mental health services earlier. Understanding the reciprocal sibling relationship and impact of SOPEP on service users and vice versa would be important for future research. Furthermore, most studies included focussed on chronic conditions, whereas future research may wish to explore early psychosis experiences (i.e., FEP and ARMS) and SOPEP's needs.

5 CONCLUSION

This qualitative review identified the needs of SOPEP, facilitators and barriers to providing support and helpful resources to providing care. The review included the psychosocial stressors and needs of SOPEP across a variety of cultures and across the psychosis umbrella. SOPEP have strong emotional connections and compassion towards their sibling and wanting to be a calming presence when socialising together. SOPEP involvement with caregiving may be within the family or they maintain all responsibilities, whilst also supporting their parents. SOPEP may experience negative emotions towards caregiving, their sibling and their family, feelings of burden and/or challenges to meeting their caregiving demands with their available resources. SOPEP's experiences were influenced by various stages: individual factors (e.g., knowledge and gender), social factors (e.g., education and family values), physical environments (e.g., access to community-based services) and macro-level environments (e.g., poverty and societal values). Connecting with local communities (e.g., religious leaders and traditional healers) in education programs may facilitate SOPEP's expectations of the caregiving role and reduce stigma and burden. Globally, SOPEP may benefit from involvement in family interventions and individual support that facilitates caregiving and acknowledged their psychosocial and emotional experiences.