Siblings' Experience of Intellectual Disabilities: An Interpretative Phenomenological Study

Children and young people (C&YP) with intellectual disabilities (ID), and their families, are likely to require support to a lesser or greater degree, across their life course, therefore, it is important for families and those supporting them, to have an optimised understanding of the experience of ID, for all family members. The potential lifelong nature of sibling relationships amplifies the importance of awareness and understanding of siblings’ unique experience (Cicirelli, 1995; McHale et al., 2012; Seligman & Darling, 2007; Stoneman, 2005). Previous research tended to rely on reports from others, such as parents and teachers (Mandleco & Webb, 2015). More recent research sought to engage siblings’ views directly; however, this remains an underrepresented body of work, particularly for children, adolescents and young people. Different methodological approaches have produced a diversity of results, leaving gaps in the broader understanding of siblings’ lived experiences of ID. By privileging the authenticity of sibling participants’ accounts, it was hoped that an enhanced understanding of siblings’ experience of intellectual disabilities would emerge, adding to the existing body of knowledge. Siblings’ experience of ID was explored within their familial and wider context, thereby informing more individualised, appropriate and timely support for siblings who have a brother or sister with intellectual disabilities, and their families. A literature review was conducted and the research adopted a qualitative approach, two theoretical frameworks underpinned the study, siblings’ experience and context were explored through the paradigms of family systems theory (Priest, 2023) and Bronfenbrenner’s bioecological theory (Bronfenbrenner & Morris, 2006; Greene & Hogan, 2005; Hayes et al., 2017, 2022). Interpretative phenomenological analysis (IPA) was the chosen methodological approach, (Smith et al., 2022). IPA was considered appropriate in addressing the research question and attending to siblings’ experience as the primary source of data recognising their direct experience is not easily accessed, acknowledging context and providing a means to support sense making of the data. Potential researcher bias and personal influences as a parent, a nurse, lecturer and researcher were integral considerations with a reflexive approach adopted throughout. Nine children and young people between the ages of 11 and 16 years with a sibling with ID domiciled in the UK participated. Semi-structured interviews were conducted as a participatory approach, gaining insight into the siblings’ experiences. A step by step analysis of the interview data was conducted, and individual themes identified from each transcript. Patterns of convergent (shared) and divergent (unique) experiences for all participants’ was explored, (Smith et al., 2022). Nine master themes emerged: (1) Knowledge, understanding and support; (2) valuing sibling relationships; (3) context outside the family; (4) becoming aware of intellectual disabilities, age, birth order and growing maturity; (5) sense of agency, compromise, power and loss; (6) family impact and coping strategies; (7) insight, vulnerability, loss of childhood, changed family relationships; (8) the future; (9) culture, and having a faith. Emergent themes were discussed, supported by transcript quotations, providing authenticity of the results, connected directly with the data. A synthesis of the C&YP’s experiences, themes from the literature review, and further interpretation was offered in the discussion. The conclusions highlighted the individual, reciprocal and interconnectivity of siblings’ experience of ID, with and within their families. This study offers valuable insight for siblings, their families and those supporting them, informed by siblings’ self-accounts. There are clear indictors for those supporting C&YP to be attentive to siblings’ need for individualised assessment and support, mindful of multiple variables for them, and their families, recognising therein, siblings’ unique capabilities, resilience and insight, with agency to inform their own and the wider needs of their families.