A systematic review of parents’ experiences of raising a child with type 1 diabetes

Background:  There are currently 1.1 million young people estimated to have type 1 diabetes (T1D) across the world. A diagnosis of T1D impacts not only the children’s lives but also those of the parents. Aim : To understand the experiences of parents raising a child with T1D. Methods : For inclusion, studies had to report qualitative data on parents' experiences of raising a child with a diagnosis of T1D. Parents included mothers, fathers or any other primary caregivers. Eleven databases were systematically searched for relevant articles. Studies were quality assessed and study characteristics extracted. The data were thematically synthesised. Results : Thirty-two studies met the inclusion criteria. Thematic synthesis yielded two analytical themes: ‘adjusting to a new reality’ and ‘navigating appropriate T1D support’. The five descriptive themes that contributed to these were ‘distressing diagnostic experience’, ‘change of life routine’,  ‘enablers and barriers to support from others’, ‘reconstruction of family dynamics’ and ‘psychological impact over time’. Conclusions : Difficulties parents encounter in support received from school and healthcare professionals are highlighted. Parents’ mental health needs should be attended to throughout T1D clinic appointments. Future research should explore fathers' experiences, as well as characteristics (such as employment status, education, relationship status and underlying mental health issues) which may affect parental experience, given the paucity of existing evidence.