A review of the literature on siblings of individuals with severe intellectual and developmental disabilities

Influence of family strength on life satisfaction of individuals who have a sibling with disability: Mediating effect of disability acceptance

“…Additionally, when parents find it difficult to perform their role as primary family caregivers for their child with a disability, their children without disability may feel burdened to take on the caregiver role and experience social difficulties (McKenzie Smith et al, 2018;Roberts, 2021). Thus, not only children with disability, but also their siblings are considered vulnerable .…”

“…During adolescence, insufficient parental attention can also result in denial and a desire for separation from their sibling with a disability (Joosten et al, 2019; Marquis, McGrail, & Hayes, 2019). Additionally, when parents find it difficult to perform their role as primary family caregivers for their child with a disability, their children without disability may feel burdened to take on the caregiver role and experience social difficulties (McKenzie Smith et al, 2018; Roberts, 2021). Thus, not only children with disability, but also their siblings are considered vulnerable (Marquis, Hayes, & McGrail, 2019; Marquis, McGrail, & Hayes, 2019).…”

“…These include feeling hurt by the presence of an SwD, a desire to conceal their sibling's disability, and avoiding others. Nevertheless, these individuals gradually adapt to life by adjusting their environment to suit their sibling's disability (Hodapp et al, 2017; Roberts, 2021). The life satisfaction of a sibling without disability (SwoD) depends on the positive acceptance of the needs of their SwD, which drives their relationships in a positive direction.…”

Scoping review: quality of life of siblings of children who are deaf and hard of hearing, have a vision or motor impairment

“…For example, previous research showed that mothers show high levels of stress ( 1 ) and low levels of self-esteem ( 2 ). In addition, siblings may face limited access to the attention of the caregiver ( 3 , 4 ), higher levels of caregiving responsibility ( 5 ), and mature behavior ( 6 ) compared to their peers or act like a young carer ( 7 – 9 ). Although a system or family-centered approach is now very common in early intervention services for children with disabilities ( 10 – 12 ), these models focus mainly on the children with disabilities themselves and their caretakers, with only marginal attention paid to the siblings.…”

“…Siblings of children who are DHH, have a VI or MI can share experiences with each other and with siblings of children with chronic diseases or (neuro)developmental disorders, but other situations can be dissimilar ( 29 ). Although there is valuable information about siblings of children with life-threatening and chronic diseases and (neuro)developmental disorders as exemplified in recent reviews ( 5 , 30 – 33 ), there are also important differences. Unlike chronic diseases, impairments may not compromise the health of children ( 19 ).…”