Future Caregiving Intentions of Siblings of Individuals with Intellectual Developmental Disabilities: The Role of Personal, Familial, and Social Factors

Individuals with intellectual and developmental disabilities (IDD) experience cognitive impairments and significant difficulties in adaptive behavior, and therefore require assistance with daily functioning throughout their lives. In recent decades, the life expectancy of individuals with IDD has steadily increased, and many are now expected to live for many years beyond the aging or even the death of their parents. This reality further intensifies the issue of caregiving for the person with the disability after the parents are no longer present – an issue that has only begun to receive research attention in recent years. Moreover, studies indicate that siblings of individuals with IDD often, and sometimes already from childhood, assume caregiving roles that are not always age-appropriate, a phenomenon referred to in the literature as “Parentification”; furthermore, they are expected to take on the role of caregiving for their sibling in the future. However, the future caregiving intentions of siblings have been investigated only in preliminary ways.

Accordingly, the present study aimed to examine siblings’ Future Caregiving Intentions toward their brother or sister with IDD, based on Burton’s “Adultification” model (Burton, 2007), which focuses on the causes and meanings of Parentification. Uniquely, the study examines the contribution of personal factors (Parentification, Self-Efficacy, Mental Health), familial factors (Sibling Relationship), and social factors (Perceived Social Support) to the Future Caregiving Intentions of siblings without disabilities toward their sibling with IDD.

The study employed a quantitative cross-sectional design, with 97 siblings of individuals with IDD aged 18-50 participating. Participants completed the following questionnaires: the Future Caregiving Responsibility Scale (Griffiths & Unger, 1994); the Parentification Inventory (Hooper & Wallace, 2010), which includes three dimensions (PFP- Parent-Focused Parentification; SFP- Sibling-Focused Parentification; PBP- Perceieved Benefits of Parentification); the Mental Health Inventory (Strand et al., 2003); the New General Self-Efficacy Scale (Chen et al., 2001); the Sibling Experience Quality Scale (Sommantico et al., 2020), which includes 23 items grouped into five dimensions (Closeness, Conflict, Jealousy, Self-Marginalization, and Worry); the Multidimensional Perceived Social Support Scale (Zimet et al., 1988); and a demographic questionnaire explicitly constructed for this study. Participants were recruited via online distribution of the questionnaire through social networks, family support centers for individuals with IDD, and snowball sampling.

Findings indicate associations between Future Caregiving Intentions and the following variables: Perceived Benefits of Parentification, Sibling Relationship (Closeness, Conflict, and Jealousy), Mental Health, and Perceived Social Support. Thus, the more siblings reported greater Percieved Benefits of Parentification, a closer sibling relationship and fewer feelings of conflict and jealousy, higher Mental Health, and higher levels of Perceived Social Support, the more they reported higher levels of Future Caregiving Intentions toward their siblings. In the multivariate hierarchical model, Perceived Benefits of Parentification were associated with increased Future Caregiving Intentions. In the multivariate hierarchical model, Perceived Benefits of Parentification were associated with increased Future Caregiving Intentions. However, when Sibling Relationship was added, Closeness predicted higher Future Caregiving Intentions while Conflict predicted lower Future Caregiving Intentions. The full model explained nearly half (49/2%) of the variance in Future caregiving, with the main explanatory contribution stemming from Sibling Relationship factors (Closeness and Conflict). In examining the mediation model, it was found that the Closeness dimension of the Sibling Relationship factors was found to mediate the association between the Parent-Focused Parentification and Perceived Benefits of Parentification and Future Caregiving Intentions. Sibling-Focused Parentification was not found to be statistically significant.                                              

The findings highlight that the experience of Parentification is not merely a phenomenon of assuming caregiving roles in childhood, but a potential resource that shapes future caregiving intentions. It appears that the meaning siblings attribute to these experiences, alongside the quality of their relationship, determines whether parentification is perceived as a burden or as a basis for willingness to continue caregiving in the future. Theoretically, the findings suggest that siblings’ future caregiving intentions are not exclusively the result of external circumstances or family constraints. Still, they are closely tied to how siblings interpret their lifelong experiences. The experience of taking on caregiving roles at a young age is not necessarily burdensome or damaging; rather, when perceived as meaningful and as a source of recognition, it may become a resource that fosters willingness for future caregiving. Moreover, the findings place the sibling relationship at the central axis for understanding the development of caregiving responsibility; experiencing closeness and fewer conflicts contributes to future caregiving willingness. Thus, the study proposes a broad and multidimensional perspective on parentification. Practically, this means that interventions and support programs cannot rely solely on mapping siblings’ roles or evaluating parents’ circumstances, but require direct investment in building positive sibling relationships. Fostering close sibling ties, encouraging dialogue about family roles, and acknowledging the importance of siblings’ contributions from an early age may enhance their willingness to take future caregiving responsibility. The findings underscore the need for early preparation – not limited to “taking responsibility,” but also enhancing siblings’ experiences so they are perceived as unique developmental processes with positive potential, contingent on emotional and social contexts.