Transitions into adulthood for children with a severe intellectual disability: parents' views

Introduction: Despite a growing body of intellectual disabilities literature around the transition into adulthood, most studies have focused upon physical aspects of the transition e.g. from school to employment or into adult services. My study sought to explore the transition into adulthood from a developmental/lifecourse perspective in order to address this current gap within the literature. Given that parents are often regarded as primary witnesses to their child’s transition into adulthood, their views were explored in order to access knowledge around this particular transition. Objectives: My study used a grounded theory approach to explore parents’ views of the transition into adulthood of their child with a severe intellectual disability. A further aim was to understand whether and how parents made psychological adjustments for their child’s transition into adulthood. This included an exploration of the emotional regulation processes that parents engaged in. Method: Twelve parents of 11 children with a severe intellectual disability were recruited from charitable organisations. A Straussian grounded theory methodology was adopted to analyse the data. Results: Parents viewed their child’s transition into adulthood as a process over time. The core process involved making frequent comparisons with their perceived “norms” of adulthood. Parents engaged in a further five processes which included “defining adulthood”, “noticing adult development”, “perceiving barriers to adulthood”, “worrying” and “making adjustments. My study highlighted that parents who defined adulthood as “turning 18” were likely to make adjustments to facilitate their child’s adult development (e.g., “encourage age appropriateness”). Those who viewed chronological age as being unhelpful/meaningless were more likely to be accepting of their child’s difficulties. Contrasting views appeared throughout these processes, demonstrating the diversity of parents’ experiences and adjustments made. Discussion: Parents engaged in a series of interactional processes for their child’s transition trajectory, which was likely to influence how they made adjustments. These processes were explained using existing psychological theory and/or relating them to findings from previous studies. With regards to a grounded theory model, I proposed a transition model of parents’ views and adjustment grounded in the study findings. The visual representation of this model helped to shift away from the staged/linear idea of transition. Future intellectual disabilities studies could seek to explore the types (and function) of comparisons that parents make with others. Additionally, further research could explore fathers’ views which are under-represented within this field. Clinical interventions may aim to challenge parent perceptions; encourage peer support; and embrace systemic working with parents through their child’s transition into adulthood