Transition and Transfer in Adolescence and Emerging Adulthood in Type 1 Diabetes: A Qualitative Study of Parents' Experiences

AIM: To describe experiences of being a parent of a child with type 1 diabetes during adolescence and emerging adulthood, including during the transfer from paediatric to adult care. DESIGN: A qualitative approach was used. METHODS: Individual interviews started in February 2022 and continued to February 2023. Fourteen parents of emerging adults participated. Data were analysed using qualitative content analysis. FINDINGS: Being a parent of a child with type 1 diabetes involved struggling to accept the loss of control and slowly loosening the ties in the close parent-child relationship during adolescence and emerging adulthood. Parents were gradually reconciling with the illness that was turning the world upside down, making efforts to become a close-knit family team, relinquishing the priorities of supervision and instead cherishing the relationship, processing that the emerging adult is flying the nest and feeling abruptly cut off by healthcare during the transfer to adult care. CONCLUSION: The findings were interpreted as outlining a transitional process among parents that started in the onset period, continuing throughout the life span to their children's emerging adulthood. Parents also transition into new roles along with their children. Parents' experiences of complex daily life, multiple transitions and the abrupt transfer from paediatric to adult care are important to acknowledge. CLINICAL IMPLICATIONS FOR THE PROFESSION: Transfer is suggested to be carried out with consideration for the individuals' prerequisites and desires. Parents are important stakeholders guiding the transfer. In adult care, a more family-centred approach could help parents cope with new challenges in joint clinical visits. Parents should be welcomed to joint clinical visits in adult care with consent and parents could benefit from being offered support from nurses independently. REPORTING METHOD: The study adhered to EQUATOR guidelines and the COREQ checklist for qualitative studies was used as the reporting method. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.