Having a parent with Type 1 diabetes : the lived experience of young adults

Abstract

Type 1diabetes is a chronic illness requiring precise self-management to prevent serious long-term complications as well as potentially fatal hypoglycaemia. It can pose considerable stress for patients and family members, affecting wellbeing and impacting family relationships. This study aims to explore the lived experience of 18 to 30 year-olds having a Type 1 diabetic parent. Six semi-structured interviews were carried out, which examined illness representations, family relationships, coping and stressors in young adults having a parent diagnosed with Type 1 diabetes. Interviews were transcribed and analysed using Jonathan Smith’s Interpretative Phenomenological Analysis (IPA) to allow an in-depth exploration of participants’ experiences. Findings from the interviews reveal that having a parent with Type 1 diabetes can place a caregiving burden on children and may lead to stress and anxiety in children. Family relationships may be positively as well as negatively affected. Parent’s diabetes self-management and the presence of hypoglycaemia unawareness or psychological distress in parents are important in shaping the outcome of having a Type 1 diabetic parent. Open communication about diabetes in the family appears to be a protective factor. Recommendations for practice and future research are put forward.