The challenges for families managing an adolescent with an intellectual disability and type 1 diabetes

Objective: This paper describes the experiences of two families caring for their adolescent sons who have type 1 diabetes (T1D) and an intellectual disability. Design: This paper arises from a larger study and reports on the findings from four parents, (two couples), who have adolescent sons with both type 1 diabetes and intellectual disability. Case study analysis of these interviews gave a more in depth understanding of management of these dual conditions from the perspective of the parents. Setting: The interviews occurred in the parents homes. Subjects: Family one consisted of a mother, father, and three children aged 16 to 20 years. Family two comprised both parents and four children attending secondary school. At the time of the study all siblings were living at home. The two adolescent men with intellectual disability and T1D were 19 year old, still living at home and attending sheltered employment. Main Outcome Measures: This paper describes the experiences of two families caring for their adolescent sons who have T1D and an intellectual disability. Results: Independence was the major issue. Obtaining independence was hindered on several fronts: having an intellectual disability and having to manage T1D concurrently, and the short and long term effects this management has on the family now and in the future. Conclusion: The complex management of T1D coupled with intellectual disability makes independence more difficult to attain for these adolescents. The parents in this study accepted that full independence may not be possible for their sons and voiced concern for their future wellbeing.