Stakeholder Validation of a Model of Readiness for Transition to Adult Care

Schwartz, Lisa A.; Brumley, Lauren D.; Tuchman, Lisa; Barakat, Lamia P.; Hobbie, Wendy L.; Ginsberg, Jill P.; Daniel, Lauren C.; Kazak, Anne E.; Bevans, Katherine B.; Deatrick, Janet A.

doi:10.1001/jamapediatrics.2013.2223

Cited by 110 publications

(100 citation statements)

References 31 publications

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“…Finally, our findings provide empirical support for the conceptualisation of healthcare transition as a multifaceted process involving partnership between numerous stakeholders (young people, parents, service providers) and systems (family, healthcare), as proposed within systemic and ecological theories [6,[64][65][66] and in keeping with international policy studies suggesting the need for systemlevel transition strategies [67]. The finding that parental perceptions of the child's condition and abilities guide their willingness to transfer responsibility for condition management to young people further indicates utility of the Common Sense Self-Regulation model in which health behaviour is theorised to be guided by cognitive and emotional illness perceptions [68,69].…”

Section: Discussionsupporting

confidence: 55%

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

Heath

Farré

Shaw

2017

Patient Education and Counseling

161

116

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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

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Section: Discussionsupporting

confidence: 55%

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

Heath

Farré

Shaw

2017

Patient Education and Counseling

161

116

View full text Add to dashboard Cite

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“…Several conceptual frameworks also exist for the transition readiness of childhood cancer survivors to adult-oriented follow-up care 39 . Those frameworks include smart (the Social-ecological Model of Adolescents and Young Adults Readiness to Transition) 40 and the transtheoretical model 41 . Despite the use of those models, more research is needed to understand both foregoing types of transitions.…”

Section: Discussionmentioning

confidence: 99%

The Experiences of Cancer Survivors While Transitioning from Tertiary to Primary Care

et al. 2016

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PurposeIn current fiscally constrained health care systems, the transition of cancer survivors to primary care from tertiary care settings is becoming more common and necessary. The purpose of our study was to explore the experiences of survivors who are transitioning from tertiary to primary care. MethodsOne focus group and ten individual telephone interviews were conducted. Data saturation was reached with 13 participants. All sessions were audio-recorded, transcribed verbatim, and analyzed using a qualitative descriptive approach.Results Eight categories relating to the main content category of transition readiness were identified in the analysis. Several factors affected participant transition readiness: how the transition was introduced, perceived continuity of care, support from health care providers, clarity of the timeline throughout the transition, and desire for a "roadmap." Although all participants spoke about the effect of their relationships with health care providers (tertiary, transition, and primary care), their relationship with the primary care provider had the most influence on their transition readiness. ConclusionsOur study provided insights into survivor experiences during the transition to primary care. Transition readiness of survivors is affected by many factors, with their relationship with the primary care provider being particularly influential. Understanding transition readiness from the survivor perspective could prove useful in ensuring patient-centred care as transitions from tertiary to primary care become commonplace.

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“…Schwartz and colleagues have developed and validated a theoretical model of transition readiness called the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART). 20,21 This model acknowledges the important influences of the patient, parent, and provider in transition and identifies seven modifiable components of these groups: knowledge, skills, beliefs/expectations, goals/motivation, relationships/communication, psychosocial functioning/emotions, and patient's developmental maturity. Less amenable factors include socio-demographics/culture, insurance/access, medical status/risk, and neurocognition/IQ.…”

Section: Introductionmentioning

confidence: 99%

Barriers and Facilitators to Successful Transition from Pediatric to Adult Inflammatory Bowel Disease Care from the Perspectives of Providers

Paine

Stollon

Lucas

et al. 2014

Inflammatory Bowel Diseases

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Background For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. Methods We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Results Participants reported evaluating transition success and failure using healthcare utilization outcomes (e.g. maintaining continuity with adult providers), health outcomes (e.g. stable symptoms), and quality of life outcomes (e.g. attending school). The patients' level of developmental maturity (i.e. ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e. helicopter parent vs. optimally-involved parent) also influenced outcomes as well as the degree of support by providers (e.g. care coordination). Conclusion IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

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Stakeholder Validation of a Model of Readiness for Transition to Adult Care

Cited by 110 publications

References 31 publications

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

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

The Experiences of Cancer Survivors While Transitioning from Tertiary to Primary Care

Barriers and Facilitators to Successful Transition from Pediatric to Adult Inflammatory Bowel Disease Care from the Perspectives of Providers

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