A realist review of programs for siblings of children who have an intellectual/developmental disability

Abstract

ObjectiveOur purpose is to answer the following question: What mechanisms or components of programs, groups, or interventions improve psychological and social aspects of the lives of siblings of children who have intellectual/developmental disabilities (IDD)? Secondly, using a realist review format, we develop program theories and recommendations that can guide current and future sibling support programs.BackgroundThere is evidence that having a sibling with IDD can affect the physical health, behavior, and mental health of siblings who do not have IDD. As a result, support programs have been developed for these nondisabled siblings.MethodsWe conducted a realist review of 31 studies assessing support programs for siblings of children with IDD. Gray literature was also included. Applying the realist paradigm, we identified program contexts, mechanisms that promote program effectiveness, and the outcomes of the programs.ResultsWe found that contextual information was often lacking in the research and no studies examined the effectiveness of individual program components. However, the mechanisms of validation of feelings and experiences, time with parents, and respite were observed as beneficial for the siblings. From our analysis and using a realist review paradigm, we developed four program theories that reflect the siblings' experiences in the various programs.ConclusionThe four program theories derived from this realist review can be summarized as “I am not the only one,” “I have needs too,” “I need my parents' attention,” and “I need a break.”ImplicationsBased upon the four theories, we offer recommendations to guide program development.

The Psychosocial Impact of Congenital Cytomegalovirus on Caregivers and Families: Lived Experiences and Review of the Literature

“…Looking to the literature around hearing loss and cochlear implant users [ 83 ], one study found that as parents devote more attention to support the needs of their child with cCMV, time and attention may be diverted away from siblings. Siblings of disabled or chronically ill children have been referred to as “glass children”, because they may become hidden within the family system [ 84 ], and their needs may go unmet [ 85 ]. It should be noted that less than 20% of children with cCMV develop lifelong disabilities, and less than 10% experience multiple conditions [ 86 ].…”

Factor Structure of the Experiences in Close Relationships—Relationship Structures Scale (ECR-RS) in Siblings of Children with Chronic Disorders

“…Previous intervention trials for siblings of CwCD have been criticized for including sibling participants "just because" they are siblings of CwCD [5]. This practice is problematic as it implies unwarranted use of clinician and family time, wrong use of resources that could be used for families with larger needs, and also poor research quality, as including participants without a certain impact of the disorder may "wash out" intervention effects and lead to misinterpretation of outcome findings [2,6]. For these reasons, it is important to develop evidence-based measurements tailored for siblings of CwCD [5,7].…”