Siblings of adults with intellectual disabilities in Chinese societies: A scoping review

Figures & data

Table 1. Inclusion criteria.

Criteria
• Published in English or Chinese
• Published up to 2022
• Published in peer-review journals
• Empirical studies where findings included the experiences or other information about adult sibling relationships, where one has intellectual disability
• Quantitative, qualitative, or mixed-method studies
• Studies were conducted in mainland China, or Hong Kong, or Taiwan or Macao

Figure 1. Screening process.

Table 2. Characteristics of the extracted studies.

	Author/year	Location	Language	Research question/aim	Method	Participants	Main findings
1	Li (2006)	Hong Kong	English	To examine the insider experience of the sibling advocates	Semi-structured interview	6 siblings aged from 42 to 61	(i) The siblings fought for the welfare and services for their siblings with intellectual disabilities.
2	Lu et al. (2008)	Taiwan	Chinese	What are family members’ attitudes toward the “interdependent home” model	Semi-structured interview	2 siblings aged 27 and 4 parents and 2 teachers	(i) Parents wanted siblings without disabilities to take up caregiving responsibility. (ii) Siblings would take the responsibility but also worried about how to balance caregiving and their own lives.
3	Chen (2011)	Taiwan	Chinese	To explore the care experiences of families with older people with intellectual disabilities and older caregivers	Phenomenology	1 sibling and other family members aged from 43 to 48	(i) The siblings with adequate income found caregiving less stressful than their parents. (ii) The siblings would take the responsibility to caregiving when older parents can no longer provide care.
4	Kuo (2015)	Taiwan	English	What are the experiences of sisters-in-law providing care for husband's siblings with developmental disabilities?	Phenomenology	7 sisters-in-law aged from 28 to 63	(i) Women who marry in are expected to handle their husbands’ domestic affairs in Confucian ideology. (ii) Sisters-in-law usually feel powerless as newcomers because their caregiving opinions are rarely adopted. (iii) Sisters-in-law experienced psychological distress while providing long-term care, but felt satisfied due to fulfilling moral rule, gaining emotional closeness, and receiving recognition from husbands’ families.
5	Fan and Chen (2022)	Taiwan	Chinese	How do siblings without disabilities choose who inherits main caregiving responsibility and work with parents in multi-sibling families?	In-depth interview	10 siblings without disabilities	(i) Parents’ appointments and opportunities to participate in care are key factors for siblings inheriting primary caregiving responsibilities. (ii) Sibling caregivers have three strategies for working with parents: obedience, confrontation, and rare voices.
6	Kuo (2014)	Taiwan	English	What are brothers’ experiences of providing care for their siblings with Down Syndrome?	Phenomenology	7 brothers aged from 32 to 56	(i) Brothers without disability internalised caregiving responsibility but they usually experienced chaos due to a lack of adequate caregiving skills. (ii) Brother tried to balance the tensions between their caregiving role and their other family roles.
7	Pan and Ye (2015)	Mainland China	English	What are the daily forms of caregiving in families of people with intellectual disabilities in rural China?	Ethnography	two families having siblings aged from 33 to 48	(i) In rural areas, taking care of siblings with intellectual disability occupied non-disabled siblings’ time which should be devoted to economic activities, putting stress on family economic wellbeing. (ii) For brothers, having a sibling with intellectual disability is a barrier to finding a spouse.
8	Chou et al. (2018b)	Taiwan	Chinese	How do parents transfer the care for their older children with intellectual disabilities?	Unstructured interviews	30 families, some of which include siblings	(i) Parents and siblings without disabilities preferred providing disability and aged care within family rather than using public services. (ii) Parents’ attitudes towards future planning was implicit and vague. (iii) Siblings will take care of their brothers or sisters with intellectual disabilities.
9	Liu et al. (2020)	Taiwan	Chinese	To explore the work-family border-crossing experiences of siblings of adults with disabilities who were working as special educators	Semi-structured interview	5 siblings aged from 27 to 37	(i) For siblings working in special schools, their family experiences enhanced their vocational commitment and motivation to learn professional knowledge and skills. (ii) Vocational experiences created opportunities for siblings to reflect on their own family experiences.
10	Liang (2021)	Mainland China	Chinese	What are the psychological motivations of siblings without disability to maintain the relationship with siblings with intellectual disabilities?	Survey	1298 siblings aged 18 or above	(i) Average frequency of siblings’ interaction per month, in person visit: 125 h; phone calls: 11 times. (ii) The motivation for contacting siblings with disability positively predicted contact frequency. (iii) Factors that predict a higher motivation for contacting siblings with disabilities include being female, older, single, having fewer children.
11	Yan and Chang (2021)	Taiwan	Chinese	To explore the psychological growth, positive influence, and the underlying driving force of a sibling without disability	Critical autobiography	1 sibling	(i) Siblings experienced confusion and withdrawal, feelings of contradiction, guilt, stress, rebellion, acceptance, and confidence. (ii) The positive influences of disability on the sibling without disabilities include continuous learning, improving empathy and equipping skills to help people with similar situations.
12	Chiu (2021)	Taiwan	English	What are the common themes which characterise values of typical siblings without disabilities across life stages in Taiwan?	Phenomenology	30 siblings aged from 20 to 66	(i) In early adulthood, the siblings without disability take a minimal caregiver role and experienced love-hate siblinghood. (ii) In adulthood, siblings wanted to follow their parents’ future plan, but they felt anxious owing to a lack of discussion with their parents. (iii) In middle and late adulthood, the siblings became primary caregivers as the parents deteriorated or died.
13	Lee et al. (2022)	Taiwan	English	To explore the common perspectives of siblings in South Korea, Japan, and Taiwan on caregiving and future planning	National survey	576 siblings across South Korea, Japan and Taiwan	(i) Siblings reported feeling less competent as caregivers and participating less in advocacy and future planning in all three areas. (ii) Siblings from Taiwan reported greater caregiving involvement and less stress for siblings with intellectual disabilities.
14	Liang (2023)	Mainland China	English	Is contact motivation of siblings without disabilities linked to their contact patterns in sibling relationships? Is affiliate stigma associated with siblings’ contact patterns and relational motivations?	Survey	1298 siblings aged 18 or above	(i) Contact motivation was positively related to contact frequency. (ii) Affiliate stigma was negatively related to contact motivation. (iii) Stigma mediated the relationship between motivation and contact frequency.

Li, E. P. Y. (2006). Sibling advocates of people with intellectual disabilities. International Journal of Rehabilitation Research, 29(2), 175–178. https://doi.org/10.1097/01.mrr.0000191845.65198.d7

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Lu, S. H., Chiang, I. T., & Wang, C. H. (2008). A living home: Development of interdependent home model for adult people with intellectual disabilities (in Chinese). Journal of Special Education, 28. https://doi.org/10.6768/JSE.200812.0001

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Chen, L. (2011). Phenomena of care experiences of two-generation-elderly families with adults with intellectual disabilities (in Chinese). Journal of Senior Citizens Service and Management, 1(1), 138–165. https://doi.org/10.29745/JSCSM.201104.0005

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Kuo, Y. C. (2015). Women’s experiences caring for their husbands’ siblings with developmental disabilities. Global Qualitative Nursing Research, 2, 134. https://doi.org/10.1177/2333393615604169

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Fan, G. Y., & Chen, C. F. (2022). “Why is it only me?”: Obedience and confrontation when adult siblings inherit the family caregiver role (in Chinese). NTU Social Work Review, 45, 45–88. https://doi.org/10.6171/ntuswr.202206

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Kuo, Y. C. (2014). Brothers’ experiences caring for a sibling with Down syndrome. Qualitative Health Research, 24(8), 1102–1113. https://doi.org/10.1177/1049732314543110

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Pan, L., & Ye, J. (2015). Family care of people with intellectual disability in rural China: A magnified responsibility. Journal of Applied Research in Intellectual Disabilities, 28(4), 352–366. https://doi.org/10.1111/jar.12167

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Chou, Y. C., Li, W. P., & Wang, W. C. (2018b). Care transition and moving in old age among older two-generation families: Older parents, ageing offspring with intellectual disability and their siblings (in Chinese). NTU Social Work Review, 37, 99–149. https://doi.org/10.6171/ntuswr2018.37.03

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Liu, Y. J., Chiu, C. Y., Chang, H. H., & Ko, C. S. (2020). Double special: A qualitative exploration of work- family border-crossing experiences of nondisabled siblings with a career in special education (in Chinese). Bulletin of Special Education, 45(3), 29–51. https://doi.org/10.6172/BSE.202011

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Liang, L. (2021). The predictors of sibling relationship of adults with intellectual disability: Analysis based on mediation effect of contact motivation (in Chinese). Social Work and Management, 21(2), 49–58.

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Yan, J., & Chang, M. (2021). A self-narrative inquiry about a normal sibling who has a brother with profound disabilities (in Chinese). Journal of Understanding Individual with Disabilities, 17(2), 26–48. https://doi.org/10.6513/JUID.202101

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Chiu, C. Y. (2021). Bamboo sibs: Experiences of Taiwanese non-disabled siblings of adults with intellectual and developmental disabilities across caregiver lifestages. Journal of Developmental and Physical Disabilities, 162. https://doi.org/10.1007/s10882-021-09797-7

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Lee, C. E., Hagiwara, M., Chiu, C. Y., & Takishima, M. (2022). Caregiving and future planning perspectives of siblings of individuals with intellectual and developmental disabilities: Insights from South Korea, Japan and Taiwan. Journal of Applied Research in Intellectual Disabilities, 1–8. https://doi.org/10.1111/jar.13033

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Liang, L. (2023). Affiliated stigma and contact frequency in sibling relationships of adults with intellectual disabilities: The mediation of relational motivations. International Journal of Developmental Disabilities, 69(5), 728–737. https://doi.org/10.1080/20473869.2021.2014740

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