Family involvement in the care of preteens with type 1 diabetes

Objective Family involvement (FI) in the care of preteens with type 1 diabetes (T1D) holds a great potential in improving the clinical treatment goals and the quality of life of the family. To strengthen research on FI, we aimed to generate and compile shared insights of expert knowledge and clinical experience to suggest a common path for practice and future research on FI in the care of preteens with T1D. Methods We designed a two-day workshop focusing on FI and psychosocial support in the care of preteens with T1D. In total, 24 researchers and clinicians from Denmark, Scotland, England and Ireland with preteens with T1D as their area of expertise, participated. Four focus areas including FI were addressed. Participants were split in groups across professions and asked to collaborate on answering four questions about each focus area in terms of the importance, the current knowledge, what we need to know more about and what should be the next step. The outputs of the group discussions were debated in plenary and subsequently the shared insights of FI were compiled by two researchers from Steno Diabetes Centre Copenhagen. Results 1) Research on FI in the care of preteens with T1D was found to be important because the level of FI profoundly influences the development of the child and can support parents facilitate the emerging autonomy of their preteen. 2) We need to know more about which guidelines, tools and training can be used to enhance FI and 3) to obtain this knowledge we should investigate the perceptions and needs of all involved. Conclusions We found that experts in the field of preteens with T1D perceive development of new guidelines/tools/interventions as the next step to continue the endeavors to enhance FI in the care for preteens with T1D. When embarking on these future projects it is important to bear in mind that although FI holds great potential in enhancing the treatment of preteens with T1D, it can be exaggerated and hence result in adverse outcomes.