Role of online support groups for parents of adolescents with Type 1 diabetes during transition

Abstract

Background: Parents caring for a child with Type 1 diabetes have reported experiencing physical, social and psychological problems. Whilst the Internet has become an accessible source of health related information, advice and peer support augmented by the use of online support groups (OSG's), little is known about the role of these groups for parents as their child transitions from paediatric to adult diabetes services in late adolescence. The aim of this study was to consider if and how OSG's are beneficial to parents during a period of change. Methods: A mixed methods design was employed. 88 participants recruited from diabetes OSG’s completed an online survey incorporating demographic information, validated scales (IPQ-R, DDS-P) and open-ended questions to assess illness perceptions, parental distress and empowerment. Data were analysed using SPSS, with open-ended responses coded using thematic analysis. Findings: Pearson’s correlation coefficients were calculated to examine relationships between the IPQ-R dimensions, DDS-P sub-scales, the empowering processes and outcomes sub-scales and the demographic data. Initial results indicated whilst parents using OSG's experienced personal distress and found the long-term effects of diabetes on their child’s life most distressing, membership and participation was empowering and had beneficial psychological consequences including enhanced self-esteem. This was corroborated by the themes identified following thematic analysis of the qualitative data, including eustress as a novel positive outcome of OSG use. Discussion: Diabetes OSG's provide a sense of community for parents with unique beneficial characteristics. Interacting with others who share similar experiences and concerns may reduce parental distress and empower individuals.