Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self‐management of their chronic kidney disease

“…Although transition checklists and guidance underline the importance of self‐management ‘behaviours’ (‘doing’ self‐management), their focus is on how HCPs can assess knowledge. 7 , 28 This study has highlighted how HCPs could obtain a more accurate and holistic picture of a young person's assumption of responsibility, through observing their actual performance of self‐management activities, rather than relying on young people's demonstrations of knowledge.…”

“… 29 , 30 This aligns with Kieckhefer and Trahms's 4 framework that emphasizes how parents are promoting shared management from early childhood and the child's developmental stage, rather than a specific age, should guide the process. Although recently developed guidance recognizes that children are involved in condition management from early childhood, 7 it does not consider how self‐management skills are developed in conjunction with gaining independence in other everyday activities. Therefore, it is recommended that further guidance is developed that recognizes how young people's and parents' motivation to engage in the transfer process is affected by broader, contextual issues.…”

“…As transcripts were anonymized, data extracts are identified by the type of participant (young person, parent, HCP) and the participants' numerical study identifier (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20). Additional data are presented in Appendix S1.…”

“…6 However, recently developed guidelines that recommend self‐management tasks for children aged 0–20 years with LTCs suggest that children are on a trajectory of developing self‐management skills from early childhood. 7 This highlights the uncertainty around the optimum time for supporting children to begin assuming responsibility for managing their LTC.…”

Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review

“…Although the world scientific literature identifies promising results, regarding the self-management of chronic illness in the pediatric population, there is little consensus on the procedural components [ 16 ]. In this population, this phenomenon is more complex, as over the life cycle roles change, family balance changes, information and support needs vary according to age and stage of development [ 7 , 17 , 18 ].…”