The role of resilience in healthcare transitions among adolescent kidney transplant recipients

Abstract

Purpose AYAs with KTs experience high rates of premature allograft loss during the HCT. There is a critical need to identify protective factors associated with stable HCT. Resilience—the ability to adapt and thrive in the setting of adversity—has known positive impact on health outcomes. This study explored the novel role of resilience constructs as protective factors in securing stable HCT among AYA with KT. Methods We conducted semi‐structured interviews of adolescents and young adults who transitioned from a single pediatric transplant center to multiple adult nephrology centers between 2010 and 2017. Interviews explored the role of key resilience constructs in participants' lives around the time of HCT. Participants were stratified into stable or unstable HCT groups based on biological markers of allograft function and clinical data from chart review. Content analyses of interview transcripts were reviewed and compared among HCT groups. Results Thirty‐two participants enrolled (17 stable; 15 unstable). Key resilience constructs more salient in the stable versus unstable HCT group were confidence in and connection to one's healthcare team. Reports of healthcare self‐management competencies were similar across both HCT groups. Conclusions Confidence in and connection to one's healthcare team appear to be linked with a stable HCT among AYA with KT. This suggests that interdependence, the ability to foster connections with and elicit support from healthcare providers, as opposed to complete independence or autonomy, which is often advised in the HCT process, is a critical component of resilience linked to stable HCT.

Psychological functioning and psychosocial issues in pediatric kidney transplant recipients

“…Increased participation of youth in clinic visits as they get older indicates an appropriate shift in health‐information sharing responsibilities 67 and can lead to higher success with transition readiness 68 . In fact, ability to foster connections with healthcare providers and elicit support around transition needs, rather than complete autonomy, is critical in building resilience in transition‐age patients 69 . Patients are less likely to become lost to follow‐up and have better outcomes after transition when the adult care center is closely affiliated with the pediatric center (ie, same providers are on staff at both), likely due to integration of care and less fragmentation 70 .…”

“…68 In fact, ability to foster connections with healthcare providers and elicit support around transition needs, rather than complete autonomy, is critical in building resilience in transition-age patients. 69 Patients are less likely to become lost to follow-up and have better outcomes after transition when the adult care center is closely affiliated with the pediatric center (ie, same providers are on staff at both), likely due to integration of care and less fragmentation. 70 Bridging the pediatric and adult care programs with a clinic focused on young adults, including involvement from both pediatric and adult providers, has also been found to result in better graft survival, fewer episodes of rejection and hospitalizations, and self-report of better adherence.…”

Empowering patients to adhere to their treatment regimens: A multifaceted approach

“…The decision to take a medication on time or at all is rooted not only in the individual's knowledge, motivation, and skills, but also heavily influenced by his/her interpersonal and family relationships, relationships with healthcare providers, and societal factors. 10,[13][14][15] The social-ecological model of health behavior theory posits that each of these factors has direct and indirect influences on our ability to partner with patients and their caregivers to promote their engagement in treatment adherence. 16 Michie et al have applied psychological theory to behavior change using the COM-B model (capability, opportunity, and motivation-Behavior), which states that a person must have adequate capability, opportunity, and motivation for a behavior, such as taking medication, to occur.…”

“…Based on prior literature and clinical experience, we know that non‐adherence is a multifaceted behavior influenced by numerous socio‐ecological domains. That is, an adolescent transplant recipient does not typically wake up and say purposefully, “Today, I am not going to take my life‐saving and rejection‐preventing medications.” The decision to take a medication on time or at all is rooted not only in the individual's knowledge, motivation, and skills, but also heavily influenced by his/her interpersonal and family relationships, relationships with healthcare providers, and societal factors 10,13‐15 . The social‐ecological model of health behavior theory posits that each of these factors has direct and indirect influences on our ability to partner with patients and their caregivers to promote their engagement in treatment adherence 16 .…”

“You Just Have to Keep Going, You Can’t Give Up”: Coping mechanisms among young adults with lupus transferring to adult care

“…9 The significance of social coping for support has been demonstrated in various medical circumstances, including the transition to adult care, where interdependence and fostering connections with and eliciting support from the healthcare team are thought to be a critical component of a stable healthcare transition. 42 The presence of a social network has been proposed by some experts as one of several outcome measures of a successful transition to adult care. 43 Family cohesiveness is also a predictor of healthcare transition readiness among adolescents with chronic kidney disease, 44 and support networks are related with resilience among young adults with spinal muscular atrophy.…”