Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: an integrative review

Background: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with their families and are expected to develop self-management skills as they mature. However, during adolescence young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children’s and parents’ experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. Methods: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions 1) How do children assume responsibility from their parents for self-management of their LTC? 2) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995-2017. Methodological quality was assessed; included papers were synthesised to identify themes. Results: 29 papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals’ roles, and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared-, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional and LTC influenced how a child assumed responsibility. Conclusions: Evidence suggests the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children’s, parents’ and professionals’ views on this process and what support families require as responsibilities change