Toward a better understanding of transition from paediatric to adult care in type 1 diabetes: A qualitative study of adolescents.

AIMS: Type 1 diabetes is associated with significant morbidity, with an increasing risk of acute diabetes-related complications in adolescence and emerging adulthood. Purposeful transition from paediatric to adult-oriented care could mitigate this risk but is often lacking. Detailed understanding of the perspectives of adolescents in their final year of paediatric care is essential to inform delivery of transition care programs. METHODS: We conducted semi-structured interviews with adolescents (aged 17 years) with type 1 diabetes at an academic institution from April 2017 to May 2018. Participants were recruited through convenience sampling. Sixty-one interviews were transcribed for analysis. Coding followed the principles of thematic analysis. RESULTS: Thirty-six percent of participants were male, and participants were from diverse socioeconomic backgrounds. We found three overarching themes in our analysis: first, difficulties navigating changing relationships with parents and healthcare teams; second, the need to increase type 1 diabetes self-management and differing comfort levels based on age of diagnosis; and third, perceived responsibilities for transition care preparation (for both the paediatric team and adolescents themselves) focused not only on type 1 diabetes-specific skills but also on healthcare system structures. CONCLUSIONS: Our findings suggest that novel transition programs addressing changing inter-personal relationships, disease-specific self-management (adapted for age of diagnosis), and healthcare system navigation, supported by parents and peers, may be needed to improve transition care for adolescents with type 1 diabetes.

Mothers' experiences and perceptions of their child's weaning process from tube feeding within a multidisciplinary Paediatric Feeding Program.

Objectives: Previous studies have described the negative impact that tube feeding of children with complex chronic diseases has on the caregivers' emotions, relationships and daily life. It is unclear whether these negative experiences persist or change during and after the weaning process. We sought to explore mothers' experiences and perceptions of their child being weaned off tube feeding within a Paediatric Feeding Program (PFP). Methods: We conducted a qualitative study using semi-structured interviews with mothers whose children <4 years old had experienced feeding tube weaning within an outpatient, family-centred, telemedicine-supported PFP. The transcripts were analyzed using thematic analysis. Results: We conducted 9 interviews with mothers of children (n = 10) in the PFP at which point data saturation was achieved. Three main themes emerged: a) the initial emotional toll on mothers stemming from fear of perceived adverse consequences of decreasing tube feeds and uncertainty surrounding efficacy of weaning; b) achievement of weaning via a family-centered approach through gaining trust, close contact, and collaboration with the team; and c) attainment of mothers' expectations of family life through transformed relationships and social activities. A positive evolution of emotions was observed, attributable to the support of the PFP. Conclusions: These experiences suggest that our outpatient weaning program had a positive impact on the stress, fear, and relational challenges that mothers reported before and during initial tube weaning. These findings highlight potential areas of discussion with families at multiple stages of the child's tube feeding experience, to help normalize emotions for families and support coping strategies.