A qualitative study investigating the experiences of young adults caring for a sibling with disability within immigrant families in the UK: “Challenges are just the constant”

ABSTRACT

Background

Despite a growing body of literature investigating the impact of disabilities on family relationships, the experiences of ethnic minorities remain underexplored.

Method

Semi-structured online interviews were conducted with eight young people (aged 18-28 years) with disabled sibling(s) within an immigrant family to understand how this affects their wellbeing and relationships, identify sources of support and strain, and explore the significance of balancing different cultural expectations. We used reflexive thematic analysis to analyse the transcribed data.

Results

Analysis identified three themes: constant challenges, negative consequences on self and relationships, and coping strategies to overcome difficulties. Despite maintaining positive relationships with their siblings, challenges took a serious toll on young people’s psychological wellbeing and relationships. Participants used various coping strategies but desired culturally appropriate extra-familial support.

Conclusions

This study has highlighted the urgent requirement for policy makers to investigate how to better support young carers from diverse backgrounds.

KEYWORDS:

• Disability
• sibling relationships
• wellbeing
• cross-cultural values
• qualitative

Disabilities have profound effects on sibling relationship quality (SRQ), developmental outcomes and personal wellbeing (Blacher & Begum, 2011; Floyd et al., 2016; Orsmond & Seltzer, 2007). Disabilities can enhance warmth, compassion, and empathy between siblings (Diener & Groneman, 2019; Kowal & Kramer, 1997), or alternatively reduce emotional closeness if siblings with a disability are more functionally dependent (Weisner, 2002). Having a sibling with a disability can positively impact school adjustment and perspective taking abilities, which helps form healthy peer relationships, but may also reduce self-esteem, and trigger mental health difficulties (Buist et al., 2013; Devine & Hughes, 2018; White et al., 2014; Yeh & Lempers, 2004).

A recent review in the United States (US) emphasised the persisting lack of research on young adults from ethnic minority groups caring for sibling(s) with a disability who experience additional challenges stemming from cross-cultural differences (Lee et al., 2021). Young adults born to immigrant parents balance exposure to different cultural values (Segal, 1991); this can create intergenerational conflict, affecting parent-child relationship quality, which can have spill-over or compensatory effects on SRQ as predicted by the Family Systems perspective (Carrera & Wei, 2014; Wu et al., 2018). For example, expectations of sibling caregiving are higher in collectivist non-Western cultures where older siblings and daughters are expected to take on caregiver duties like safety and nutrition monitoring, cleaning, and providing medication (Dallas et al., 1993; Kale & Siğirtmaç, 2021; Sabet, 2008). Therefore, individuals who typically do not take on caregiving roles might be more negatively affected by disabilities as they take on unfamiliar duties (Burke et al., 2012; Singh & Mehra, 2019). These challenges may be exacerbated in immigrant families where children balance conflicting collectivist parental expectations with individualistic societal values. Disabilities with greater caregiving demands have more negative effects in Western societies because caregiving interferes with individualistic goals (Bauminger & Yirmiya, 2001; Orsmond & Seltzer, 2007; Taylor et al., 2008). Similar problems have been reported by young adults from immigrant families in the few qualitative studies that have been conducted, such as restricted social activities, suggesting young adults can internalise individualistic goals that are hard to reconcile with parental collectivist values (Kao et al., 2012). In non-Western cultures individuals maintain positive SRQ and readily take on extra responsibilities to reduce their families’ burdens (Dogbe et al., 2019). However, parents reported those children still showed signs of internalising problems suggesting even in the context of high caregiving norms, such responsibilities, take a toll on psychological wellbeing highlighting how young adults with collectivist values require better support (Dogbe et al., 2019).

Studies on immigrant families also need to account for duties unique to this group, such as language brokering for parents, which may have positive or negative effects on young adults depending on how they perceive responsibilities (Bauer, 2016; Chao et al., 2006; Martinez Jr et al., 2009).

Furthermore, there are cultural variations in perceptions of disabilities (Okumoto, 2016). A study of Latino siblings showed that inaccurate knowledge of the siblings’ disabilities combined with stronger religious beliefs in collectivist societies feeds into unrealistic hopes their sibling would recover from their disability (Lobato et al., 2005). Unrealistic expectations of recovery can lead to an underestimation of caregiving responsibilities, negatively impacting young adults’ future plans (Bhattashali et al., 2018). Qualitative studies also find high levels of stigma around disabilities in collectivist non-Western cultures but very little is known about young adults in immigrant families and their sibling relationships (Zechella & Raval, 2016). This requires further exploration to develop culturally appropriate support for young carers. There is little research exploring the experiences of young adults with a sibling with disability who have grown up in immigrant families. This study explores how these experiences shape their family relationships and personal wellbeing by giving young adults the opportunity to discuss the impact of their sibling’s disability on their lives, including specific challenges and sources of support. This will inform the development of interventions to better support ethnic minorities and highlight areas for future research.

Methods

A qualitative study was appropriate to explore participants’ perceptions, experiences, and sense-making through in-depth interviews.

Participant recruitment

Purposive sampling was used to recruit eight young adults (18-28 years, mean age = 21) from a range of different ethnic backgrounds who grew up in the United Kingdom (UK) with a sibling with disability. See Table 1 for further details of participants. The study was advertised across social media platforms, universities, organisations working with ethnic minorities e.g., the Sikh community, and one secondary school. Interested individuals contacted the lead researcher who then sent them an information sheet about the study and consent form. Participants were able to ask follow-up questions before agreeing to take part and written consent was obtained.

Table 1. Participant characteristics. Sample characteristics.

	N
Ethnicity
Asian or Asian British	6
Black, Black British, African, or Caribbean	2
Birth order
Youngest	1
Middle	2
Eldest	5
Disability Diagnosis*
Cerebral Palsy	2
Autism Spectrum Disorder	4
Dyslexia	2
Dyspraxia	1
Epilepsy	6
Gaze Palsy	1
Hemiplegia	1
Malonic Aciduria	2
Optic Atrophy	1
Profound and Multiple Learning Disabilities	1
Severe Learning Difficulties	4
Parental Country of Origin
Dominica	1
Hong Kong	1
India	3
Jamaica	1
Kenya	1
Nigeria	1
Pakistan	2
Uganda	1

*Many participants had siblings diagnosed with multiple disabilities.

Data collection

Semi-structured interviews explored participants’ thoughts, feelings, and experiences of (i) their sibling relationships (ii) the impact of the siblings’ disabilities, parental expectations, and culture on their relationship and wellbeing, and (iii) sources of support when faced with challenges. Participants completed a short demographics questionnaire prior to the interview, providing details about their birth order, gender, parents’ countries of origin, family structure, and the nature of their siblings’ disabilities. This information helped establish rapport during the interviews and frame questions based on the participants’ specific circumstances. Interviews were conducted online using a video conferencing software, lasting between 30–60 min. All participants provided written consent prior to interviews and were made aware that they could withdraw from the study at any time without giving a reason. This study was reviewed and approved by the University of Cambridge Psychology Research Ethics Committee (PRE.2021.105).

Data analysis

Interviews were recorded, transcribed, and anonymised. Interview transcripts were analysed using reflexive thematic analysis (Braun and Clarke, 2019). The analysis took a constructivist approach, which recognises multiple realities exist because people’s knowledge and reflections depend on their personal experiences. This suited the aims of this study as young adults’ experiences would vary depending on their unique circumstances and cultural backgrounds. The lead author led the analytic process by becoming immersed in the data by repeatedly listening to the audio recordings whilst transcribing the interviews. Given the lack of research in this field, data relevant to the research questions were coded inductively (driven by the data). The researchers met regularly during the analytical process to discuss the transcripts and revise the coding. Codes with similar concepts were then grouped together to generate initial themes; this was an iterative process to check the themes represented the data.

In accordance with Braun and Clarke (2019), the team reflected on their own positioning. The team all have psychology backgrounds. The lead author has a sibling diagnosed with cerebral palsy and foreign-born parents. However, taking a constructivist approach shows the diverse ways in which sibling disabilities can impact relationships and given the lack of research in this field the lead researcher cannot impose expectations from personal experiences onto the participants. Using a semi-structured interview with predetermined topics to be covered without asking leading questions overcame this issue. The team also includes two chartered psychologists, who are legally recognised and trusted to deliver the highest standard of services by the British Psychological Society, and mental health researchers with experience of working in the field of disability and caring for disabled people.

Results

The analysis generated three overarching themes with a cross-cutting theme shown in Table 2. Themes are described below with example quotes I from participants are referred to in the text.

Table 2. Summary of key themes and sub-themes.

Cross-cutting Theme	Major Themes	Sub-themes
Cross-cultural clashes	Constant challenges	Being a caregiver Family expectations Lack of recognition by society
	Negative consequences on self and relationships	Psychological wellbeing Constraints on personal life Strained relationships
	Coping strategies to overcome difficulties	Individual resilience Always place sibling first Social support builds confidence

Constant challenges

Being a young caregiver

Young adults described the challenges of taking on the role of caregiver and parent-like responsibilities for their disabled siblings, ranging from providing basic support in everyday activities to more extensive duties including “monitoring food, providing medication, attending hospital appointments, and contacting professionals”. One participant described their responsibilities:

“ … doing his therapy activities, making his food, making sure he has his medication, helping him have a bath and changing him.” (P1, aged 18)

These duties required constant vigilance as they continued during the night and holidays meaning it was not easy to “switch off”, making it difficult to balance school, work, and friendships. One participant described:

“ … I’ll take up a night shift and I've been doing that since I was like 14 or 15, doing like 12 hours so from 9pm to 9am maybe over the weekend or on school holiday.” (P4, aged 21)

Duties were taken on readily because participants had positive sibling relationships and internalised parental cultural norms, which viewed caregiving to be an obligation, to be carried out by older children especially. Younger siblings also took on these duties, however, in the context of having non-disabled siblings the oldest faced more pressure, even when age gaps were small. Younger siblings therefore struggled to take on responsibilities for their sibling with disability as they were typically undertaken by older siblings:

“ … it was quite hard for me when she [older sibling] moved to uni and I would regularly FaceTime her because sometimes I wouldn't understand some of my [disabled] brother's admin stuff because I'd never done it before and it did affect my relationship with my mum.” (P2, aged 19)

Family expectations

Parents held numerous expectations of participants, which were difficult to meet, for example, expecting them to prioritise their siblings’ care over socialising with friends. Young adults described how parental expectations also guided their future as they were expected to become their siblings’ legal guardians, and this responsibility weighed heavily on some of them:

“ … they have expressed that if something happens to them, I'm the one that knows his background and knows what his needs are and that I will be in charge of his care … So, I know that one day that responsibility is going to be on my shoulders.” (P5, aged 21)

In other cases, parental expectations were implicit. Participants said they were expected to take on duties without question, adding emotional pressure:

“ … responsibilities are sort of unspoken, and that expectation, but you just sort of have to do them otherwise they’re like I can’t believe you haven’t done this, and that sort of emotional blackmail.” (P8, aged 20)

Balancing caregiving with other expectations like high academic attainment, providing emotional support for parents, and resolving household conflicts was an additional challenge. Other expectations were unique to immigrant families like language brokering due to their parents’ language barriers. Therefore, young adults took on additional responsibilities for siblings, even during extremely stressful times:

“ … my mother, she's not really comfortable speaking English so whenever it comes to doctor's appointments I would book them. She [sister] was once having an epileptic seizure, and I was maybe 10 years old, and I had to sort of call the ambulance and get used to dealing with authorities.” (P8, aged 20)

Support from extended families was lacking because such household structures were not the norm in their communities (this included some South Asian families, but particularly West African families), or because they had negative attitudes towards disabled individuals:

“ … I would say [extended family] are more a source of stress than support … because of some of the dynamics within like Pakistani culture, and like South Asian culture in general. So they’ll say slightly ignorant things … just sort of this folk culture that comes back from rural India.” (P8, aged 20)

Lack of recognition by society

All participants felt changes were required at a policy level to address challenges stemming from a lack of societal recognition. Participants wanted a “more identifiable” and “concrete” community to draw from due to a lack of appropriate social support at both the community and structural level:

“ … we get forgotten sometimes but we can't sort of go through our entire life sort of feeling that second feeling. There has to be some sort of structure there to support us to know that we're valuable people in our own right, we're not just a vulnerable young person.” (P5, aged 21)

Many reported facing stigmatising public attitudes around their siblings’ disabilities within the UK but even more so in their parents’ countries of origin.

Social support groups were not helpful when accessed because they were “white-led”, and lacking feasible solutions for the “added pressure” that young adults felt was imposed by their culture:

“ … I think culture is really important because you do get a lot of privileged white people who complain about things (…) maybe if the support group was with people of colour I feel like I would have bonded a lot more and not felt like it's really awkward and weird.” (P6, aged 28)

Accessing government welfare benefits was difficult because they did not qualify for extra support as they were not recognised as an official carers:

“ … I pick up a lot of the slack that [mum] leaves behind … But a lot of that just doesn't really get recognised because I’ve looked at a lot of websites and I’m not classified as a young carer, because I'm not the sole carer … so that's really quite a bit of a struggle.” (P8, aged 20)

Lack of funding and resources for disabled individuals provided by the “unstable” and “unpredictable” health and social care system meant young adults could be expected to look after their siblings at any moment. It was also hard to find therapists who could deliver culturally-adapted cognitive behavioural therapy (CBT), which participants felt was essential to overcome challenges stemming from cultural clashes.

Negative impact on self and relationships

Psychological wellbeing

Young adults described how the above challenges took a serious toll on their wellbeing. Emotional stress stemmed from factors related to their siblings’ disabilities such as traumatic hospital visits.

“I do have a lot of PTSD from hospital visits … I don’t think it's ever something a young child should get used to, like an ambulance sitting outside their home and seeing their sibling being taken away not knowing if they’re going to come back.” (P4, aged 21)

Most young adults found it emotionally difficult to deal with their siblings receiving greater parental attention, especially when they were younger and unable to understand justifications for differential treatment:

“ … growing up emotionally was quite difficult because a lot of the attention goes to them. So my parents never went to my parents’ evening because they were just so busy with this full-on full-time job of my siblings. (…) my needs will always be put second.” (P8, aged 20)

This made some young adults wish their siblings were not disabled, generating guilt in the context of otherwise positive relationships:

“I don't know how to reconcile the fact that it's quite evidently a form of ableism, the fact that I kind of wish my brother was not on the spectrum.” (P3, aged 20)

Whilst parents could be flexible in considering their children’s needs, sometimes young adults were forced to pursue interests in secret, which was an isolating experience. One participant applied to university without their parents’ knowledge because their parents wanted them at home to provide care duties. Some young adults faced barriers in accessing appropriate mental health support because parents did not take mental health problems seriously:

“ … it took a lot of tragedy, like my brother’s mental health crisis … before that my mum didn't even really believe in mental health, she was like you don't have to do taxes why are you depressed?” (P8, aged 20)

Some participants felt guilty for moving out and were distracted from work by their siblings’ struggles despite being far away:

“I don't even like coming to uni, being that far away from my brother, just in case that if something happens and I get a call, I can’t be there.” (P4, aged 21)

Feelings of embarrassment were caused by stigmatising attitudes from others and feelings of guilt also generated when their siblings were left at home, due to lack of accessible spaces:

“ … we do feel bad for not taking him because you make all these new memories without him but (…) we can't physically do that unless there are these accessible places for him.” (P2, aged 19)

For others, siblings were verbally and physically aggressive, which although recognised as being out of their control, was still seen as “heart-breaking” and led to “emotional exhaustion”. COVID-19 exacerbated challenges because available government and professional support was withdrawn, which created frustration and made siblings more aggressive:

“I had scratches all over my hands and bruises on my body, because she's quite strong as well so I had sort of like this physical outcome of lockdown.” (P8, aged 20)

Constraints on personal life

Growing up with a sibling with a disability constrained physical, social, and educational opportunities. Caregiving limited free time at home, opportunities to pursue hobbies, and time to socialise with friends. This meant some participants missed opportunities to pursue interests:

“I didn't really have the time to go to after school clubs. I wanted to pursue an interest in music but you know you don't really have the time … So in some aspects I definitely feel like I've lost out in a way.” (P6, aged 28)

A lack of wheelchair-accessible places for their siblings (particularly abroad) such as lifts, wide doors and corridors, and pavements meant there were limited opportunities to go on holidays. Those who were able to go on holiday felt it was rarely a rest because there were no breaks from care duties:

“ … you don’t get a break ever because something that’s meant to be a fun holiday just ends up causing arguments and breakdowns.” (P2, aged 19)

More serious constraints included interference with education like absence from school and sacrificing offers from better universities to live closer to home, either willingly or due to parental expectations.

“ … coming away from home was quite a contentious decision because my mum (…) didn’t want me applying to any universities outside of London. She was like, I need you to live at home, I need you to be near me and I need you to help me out.” (P8, aged 20)

Some constraints were anticipated to arise in the future, such as not being able to work internationally, or potential difficulties in forming romantic relationships, which would require partners to understand their caregiving duties:

" … I do want to get married in the future and have kids, but I feel that will be kind of restricted because I won't be able to move out of my house like my partner would have to understand that I’m taking care of my older brother who is fully dependent on us.” (P2, aged 19)

Strained relationships

Relationships with parents and extended families were strained due to cross-cultural clashes in family values and perspectives on disabilities. Young adults reported their families often held “unrealistic expectations” that siblings would recover, viewed their disabled child as a “burden”, or were overprotective of them. Young adults described how such differences caused arguments about what was best for their siblings, or prevented participants from forming close extended family relationships due to their stigmatising attitudes:

“I think for Caribbean's when somebody is disabled it’s like you can't do nothing, you’re useless, and I can’t boast about what you [sibling with disability] can do to others” (P4, aged 21)

A few participants said their siblings’ disabilities made it hard to build a bond, straining their relationship. When siblings were non-verbal it was difficult to understand them due to communication barriers.

“I can’t even imagine how my brother must feel because he’s nonverbal like how he feels in that environment … I think that's one of the things that stresses me out even more because at least I'm able to communicate how I'm feeling but how is he feeling?” (P4, aged 21)

Participants with autistic siblings found it hard to deal with their siblings’ lack of emotional reciprocity, making relationships feel one-sided:

“It’s his whole like inability to put himself in other people's shoes … And that really hurts my dad but my brother doesn't actually care which is really frustrating to see … because it's like I can't do anything about that.” (P3, aged 20)

Coping strategies to overcome difficulties

Individual resilience

Despite constant challenges, participants described finding ways to “soldier through”. Individual-level skills included taking their siblings’ perspectives by “entering their world” to meet their needs. Having a sibling with disability who received greater parental attention forced participants to learn skills to become independent and self-sufficient. Alternatively, they attempted to actively seek more attention from their parents by engaging in extracurricular activities like sports:

“I used to do things for attention, like pass a note under the door to say I need ‘mummy time’ or something like that … I was very active so I did loads of different sports, and that meant that they had to come. One of them at least had to come and support me so that was a great way to bond with my dad.” (P4, aged 21)

Religious participants found praying or meditating useful. Finding distractions from ongoing struggles was also common, like exercising to physically relieve stress, and exploiting alone time:

“ … when my sisters would have naps in the afternoon, I would take that time to just read a book and I would be lost within those books and that sort of escapism was really it for me for a long time.” (P8, aged 20)

Always place sibling first

All participants reported a positive relationship with their sibling. Depending on the age gap, they either saw their sibling as their “best friend” or they felt “like a mother” to them. In many respects, participants felt that their sibling relationships were not that different from other non-disabled relationships, consisting of highs and lows. They engaged in various everyday activities with their siblings, like watching movies, going out on walks, painting, listening to music, playing games, as well as bickering and arguing:

“ … he's very quick to switch straight into big brother mode and starts telling me off or something … he knows he can pick on me, and I will still love him.” (P5, aged 21)

However, disabilities added a unique dimension to relationships, so young adults had to actively build and maintain bonds by placing their siblings’ needs first.

“ … our relationship is so strong like I can't really imagine my life without him, he’s been such a core part of my life, and I feel like for a long time, especially while growing up, I think my identity was centred around my sibling.” (P4, aged 21)

Young adults described creating activities catered to their siblings’ needs like playing with toys providing sensory stimulation or organising trips suiting their interests. They maximised time with their siblings, especially if this was limited because they were working away from home, and even when they had grown out of those interests:

“ … his favourite activity is watching TV so I like watching cartoons even though I'm grown up now I still enjoy that.” (P7, aged 19)

Despite recognising challenges, all young adults emphasised their sibling relationships were rewarding and life enriching, with no negative perceptions of their sibling:

“It hasn't affected it really, if anything, it’s made it more positive … I would never get annoyed at my brother because it’s not his fault that someone else can’t understand his basic needs.” (P1, aged 18)

Instead, siblings were seen as positive influences on various aspects of life. This included developing personal skills, like perspective taking, empathy, patience, and independence:

“I've grown so much as a person like I wouldn't be where I am now, he’s educated me so much on stuff (…) I'm more cautious of things I say around people just in case they have a disabled relative or somebody like that.” (P2, aged 19)

Young adults reported being inspired by their siblings to make educational and career choices to help others, particularly children with conditions similar to their siblings:

“ … I've definitely gained so much from him, especially in terms of learning about how others see the world, learning about how they interact with the world and how access is really difficult, a lot about rights, legislation, kind of how difficult it is to navigate the world if you don't have support. So it's definitely inspired my work and for me to help other people like him.” (P6, aged 28)

Social support builds confidence

Parents helped foster close sibling relationships, as participants said they were raised to value family. This was especially likely when parents held “progressive” attitudes, were also born in the UK, or were educated about their siblings’ needs. Open conversations about responsibilities with family and friends helped reduce stress. Sometimes family friends and cousins took on caregiving duties, providing them with free time to rest or catch up with work and socialising. It was especially helpful to socialise with people from similar cultures because they recognised added difficulties and provided better advice:

“ … when I talk to my cousin, she understands from a cultural point of view as well … it is sort of affirming to have someone who understands that you know this isn't just a normal experience or this isn’t an experience that can be normalised by a white person. It has to be understood by someone who understands the culture.” (P5, aged 21)

Participants appreciated formal sources of support as they contrasted support in the UK to countries that their parents had immigrated from, where equivalent resources were lacking. They often reflected on how such differences could have had a negative impact on their opportunities. Formal sources of social support included speaking to social workers, physiotherapists, and occupational therapists about their siblings’ needs, as well as accessing therapy. These were advantageous because participants felt included, and they could openly speak about emotionally challenging experiences:

“My brother started going to therapy, and I eventually had a few sessions … that definitely made it a lot easier in dealing with quite a different life like just carrying a lot of stuff from childhood like having to see one of your sister’s nearly die.” (P8, aged 20)

Visiting special needs schools further boosted young adults’ confidence in going out in public as they practised going out on trips with children like their siblings.

Discussion

This study addressed a significant gap within disability research by providing young adults from ethnic minority communities the opportunity to share their experiences of growing up with siblings with disabilities in the UK. Overall, young adults had positive relationships with their sibling(s), though relationships with other family members were often strained, and challenges took a serious toll on psychological wellbeing and life opportunities. Consequently, young adults used various coping strategies, which enabled resilience.

Young adults maintained positive sibling relationships by actively building a close bond and placing their siblings’ needs first. They used strategies like emotion regulation, not blaming their siblings for constrained life opportunities, choosing to perceive them as positive inspirations instead, in line with previous studies on Western samples (Greenberg et al., 1999; Marks et al., 2005; Ross & Cuskelly, 2006). Positive sibling relationships in this study were consistent across disabilities characterised by high and low caregiving duties, congruent with findings in collectivistic non-Western cultures where siblings readily take on extra responsibilities to lessen burdens on parents (Dogbe et al., 2019; Dickinson, 2021). This differs from Western countries where emotional closeness is lower when caregiving duties are high because caregiving expectations are not normative (Horwitz et al., 1992; Weisner, 2002). Therefore, internalising parental cultural values helped maintain positive relationships despite constraints imposed by caregiving.

Personal wellbeing and other family relationships were not immune to the negative effects of challenges stemming from factors related to the disability, family expectations, and wider society. Young adults were significantly affected by differential treatment caused by their siblings’ needs for greater parental attention. Previous literature emphasised how differential treatment has negative effects on SRQ and self-esteem when perceived to be unfair; not in the context of having a sibling with disability (Kowal & Kramer, 1997). However, our participants emphasised that whilst reduced attention was not blamed on their siblings, it had a significant emotional impact. This demonstrates the value of using qualitative research to understand siblings’ experiences rather than concluding differential treatment is not a challenge because it does not affect SRQ measurements (McHale & Pawletko, 1992; Stoneman, 2005).

Young adults in this study also experienced challenges related to family expectations. Parental expectations were higher for older siblings, in line with cultural differences around sibling expectations (Sabet, 2008). Whilst younger siblings in this study readily took on responsibilities, it was difficult for them to take on extra duties when older siblings moved out of the home. Those who were closer in age to their sibling with disability reported positive wellbeing experiences, which they put down to their parents having lower expectations of them, whereas older young adults described more stressful experiences as they were expected to take a parental role. This differs from findings in Western and non-Western cultures, which have reported better adjustment and positive sibling relationships when there was a larger age gap (Huang et al., 2011; Kuo, 2000). Further qualitative investigation is needed to explore older siblings’ experiences within immigrant families. For example, our participants relied on siblings without a disability for social support when struggling to balance family responsibilities, particularly when parents were not available or there were cultural clashes. Such support was readily available when siblings without a disability were similar in age and could share responsibilities, compared to older siblings who took on a range of duties alone, sometimes expressing a desire for an older figure who could provide them with guidance.

Balancing exposure to different cultural values was a salient and pervasive challenge for our participants, as can be expected in immigrant families where adolescents’ identities depend on norms imposed by parents and the individualistic Western societies they grow up in (Nguyen, 2003). Participants in this study reported how internalising family expectations helped foster close sibling relationships and acceptance of extra duties. However, taking on extra responsibilities whilst also meeting high academic expectations was extremely stressful. Internalisation of similar values can therefore have negative effects when pressures stemming from them become too high, like those reported in ethnic minority families in the US (Lobato et al., 2005). Alternatively, cultural clashes can impose additional changes. For example, higher stigmatising attitudes towards disabilities strained parent–child relationships, and reduced support from extended family in the rare instances such household structures were present. In accordance with family systems perspectives, problems did not spill over into sibling relationships (Minuchin, 2002). Instead, our participants built even stronger relationships with their siblings with disability by utilising strategies mentioned previously (Ross & Cuskelly, 2006). However, wellbeing was negatively affected by cultural clashes when parents constrained young adults’ choices or did not recognise their mental health challenges causing some young adults to pursue interests in secret or hide struggles from their parents. This supports conclusions of a recent review in the US where individuals from ethnic minorities experienced high internalising problems, which were masked from their families (Lee et al., 2021). However, it is worth highlighting this did not apply to all our participants as some young adults reported being able to speak openly with their parents when they were understanding.

Despite challenges, our participants were able to overcome adversity and show resilience. This was promoted by individual coping strategies, as well as families, social communities, and formal sources of support provided by government health and social care services. This is in line with Masten’s (2015) conceptualisation of resilience as “ordinary magic” which can be promoted by providing intra- and extra-familial resources. Implications on policy and future research will be discussed below given the significant lack of extra-familial social support.

Implications

Family relationships predict child development and wellbeing so understanding the impact of disabilities and cross–cultural experiences are important from a practical perspective. Current gaps in our understanding need to be addressed if interventions are to be effective for diverse populations. A meta-analysis investigating the effectiveness of wellbeing interventions for siblings of children with disabilities found inconsistent results, highlighting the need for better evaluation methodology and consideration of moderators like culture (Smith et al., 2018).

Ethnic minorities often face barriers in being offered and seeking support. There are implicit assumptions that collectivist attitudes produce strong family support and do not require external support (Canary, 2008). Despite some supporting evidence, negative perceptions of disabilities, lack of education, and caregiving burdens can reduce the chances of receiving extra support from extended family members (Cook et al., 1997; Morse & Messimeri-Kianidis, 2002). Alternatively, extended family structures are not always the norm so diversity within minority ethnic groups needs to be recognised too. Additionally, not all collectivist groups seek external support, preferring to rely on spouses and children, over extended kin, or society (Ow et al., 2004). For example, Asian-American families are less likely to seek external formal support as they believe this brings disgrace on the family for not upholding their responsibilities, in line with reports of Asian participants in this study (Jones et al., 2011). This places extra strain on young adults wanting to support parents, which could be reduced by recognising the diversity between ethnic minority groups and investigating how to reduce hesitance in seeking external support.

Results also highlight the need for better extra-familial support. Participants commonly cited the need for better social support groups, which can be expected as low social support combined with high responsibilities is associated with more distress (Tomeny et al., 2017). The requirement for better support groups for people with siblings with disabilities was also highlighted by studies conducted two decades ago (Evans et al., 2001). Participants in this study made similar recommendations like wanting better knowledge of their siblings’ disabilities, along with unique requirements like making support groups culturally appropriate. A recent systematic review of support groups found only one study recorded ethnicity as an experimental variable, concluding better support was needed but how this should be implemented remained unclear (Tudor & Lerner, 2015). Though this qualitative study relied on a relatively smaller sample, it has provided insights for changes like better financial support, culturally appropriate support groups, and workshops to educate young adults about their siblings needs like those available for parents. Research by UK charities such as “Taraki” have worked with disabled individuals from ethnic minorities, such as Punjabi communities, to improve mental health and wellbeing. This revealed the importance of creating culturally-sensitive platforms and potential to provide similar services for young carers of disabled individuals (Singh, 2021).

Strengths and limitations

This is one of the first qualitative studies to investigate the impact of disabilities on siblings within immigrant families. Previous research has often focused on parental experiences or relied on parent reports as a proxy for children’s experiences (Toste et al., 2015). Therefore, qualitative studies are needed to understand the experiences of this under-explored group. Recruiting participants that hold specific characteristics can be time consuming and challenging and as such, a less extensive sample is needed to achieve sufficient information power. The sample was diverse in that participants came from a range of different cultures, and siblings’ disabilities varied in terms of the amount of caregiving required. However, older siblings were overrepresented in this study, so future research should explore if and how younger siblings’ views and experiences differ.

Conclusion

In summary, this qualitative study has provided significant insights for the need to develop effective interventions to support the wellbeing of young adults growing up with siblings with disabilities in immigrant families. This especially includes providing culturally-appropriate support, as cultural clashes pose a significant challenge. This study has also generated questions to be explored by future research. For example, individuals living in joint households with extended family members, such as cousins, wanted to volunteer because they came from cultures where distinctions between siblings and cousin relationships were blurred. This revealed a group of young carers whose experiences have likely been overlooked even though they may take on similar responsibilities to siblings. Long-term consequences of strained parent-child relationships should be also explored. Cultural clashes could exacerbate risks of estrangement, or alternatively, unsatisfactory relationships might be maintained in the context of high family duties increased by sibling disabilities. Finally, results highlight the caveats of grouping different ethnic minorities and generations into a single group, as values and family structures can differ within the same groups. Future research would benefit from studying them independently to identify ways in which young adults from different backgrounds can be supported, rather than taking a one-size-fits-all approach, which has limited effectiveness.

Acknowledgements

The current study was not supported by any external funding. All authors contributed to the conceptualisation and design of the study, data analysis and to the writing of the manuscript. Data collection was conducted by the first author. We would like to thank the young adults for their participation in the study, and those who raised awareness of our research project with others. The first author would like to dedicate this work to their older brother whose marked resilience inspired them to pursue this research project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data are not available.