Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Abstract

Highlights Parents view young person progression to self-care as an incremental process.  Parent perceptions of child readiness and wellness impact on healthcare autonomy.  Parents are concerned about a lack of transitional healthcare.  Parents can adjust their behaviour to support their child's independence.  Healthcare professionals can support parents to facilitate adolescent autonomy. AbstractObjective: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods: Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised. Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child's progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence. Conclusion: Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

“…In some situations, parental behaviour may be a barrier to effective transition as maternal overprotection has been found to be a predictor of health‐related quality of life pre‐ and post‐transfer from paediatric to adult health care (Clarizia et al, ; While et al, ). However, the individualised focus of adult services may not reflect the realities of YAs’ lives, which are characterised by interdependent relationships (Bratt et al, ; Heath, Farre, & Shaw, ). Hence, parents’ lack of attendance at adult clinic appointments may be a source of information discontinuity and have adverse effects on YAs’ condition management (Allen, Channon, Lowes, Atwell, & Lane, ; Lewis & Noyes, ).…”

Chronological age when healthcare transition skills are mastered in adolescents/young adults with inflammatory bowel disease

“…Some studies suggest that parental management of health issues may even act as a barrier to HCT skill mastery[22,28]. This may be especially true in older adolescents, as parents can be hesitant to relinquish control of the AYA’s healthcare[22,29] or uncertain about how to do so effectively[30,31]. Future studies may further examine adolescents’ capacity to learn more complex HCT skills.…”

“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

“…Tensions known to occur, where a shift to the young person as the central decision-maker, we suggest might be more easily recognized and enabled through use of the benchmarks (Factor 6). Addressing the transitional care needs of parents as well as young people is essential to facilitate a “shared care” approach as an intermediary measure that supports transition of both parents and the young person (38). Being gradually prepared (Factor 2) to move into adult roles with a developmentally appropriate approach, through collaboration between pediatric and adult teams (Factor 3), will require some approach to “overlap” to help connect the two systems and bridge the perceived “care gap” (39).…”