Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions

Porto, Alexander; Anderson, Lara; Kalinich, Tyler; Deane, Kyle; Zebracki, Kathy

doi:10.1080/10790268.2019.1574437

Cited by 7 publications

(11 citation statements)

References 14 publications

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“…While various transition tools exist, Schmidt et al 67 explain that a portable medical summary shared between the young person, parents/caregivers, as well as the healthcare providers has been used to support the transition of young people with chronic conditions. Porto et al 26 similarly proposed ‘the development of readily available, concise, and comprehensive overviews of individuals’ medical history ’ as a strategy to improve communication between healthcare settings and transition outcomes for young people with SCI. Our participants emphasised this same need and reported potential benefits in that a portable medical summary could reduce the negative emotional impact of having to re-tell their story time and again.…”

Section: Resultsmentioning

confidence: 99%

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

et al. 2022

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ObjectivesHealthcare transition (HCT) interventions are pivotal to paediatric rehabilitation. However, there has been limited research focusing on HCT in young people with spinal cord injury (SCI). To date, little has been reported on key factors that may contribute to a positive or negative transition experience and what, if any, are the gaps in the transition process. This study explored the experiences of transition from paediatric to adult healthcare for young people with SCI and parents/caregivers in pursuit of co-designing and developing an intervention to support transition.Design, setting and participantsThis qualitative study forms part of the planning phase of a larger participatory action research project. It supports obtaining a rich understanding of the phenomenon and the issues and actions necessary to achieve change. Semi-structured individual interviews were conducted online between April and June 2021 with young people with SCI and parents/caregivers who had transitioned or were preparing for the transition from paediatric to adult healthcare in NSW, Australia. The interviews were analysed using an inductive reflexive thematic analysis approach.ResultsThe study recruited nine participants, five young people with SCI and four parents/caregivers. The interviews provided invaluable insight into young people with SCI and their parents’/caregivers’ experiences of HCT. As HCT experiences were often less than optimal and needs were not adequately met, some recommendations were offered. These included a coordinated and streamlined handover from paediatric to adult healthcare providers, and a ‘one-stop shop’ for young people with SCI and their parents/caregivers to access transition information, such as how it occurs, who to call for ongoing support and advice, and tips on how to transition successfully.ConclusionProviding a coordinated and streamlined handover process as well as access to more context-related information could improve the transition experiences of young people with SCI and parents/caregivers, resulting in improved health outcomes and greater independence.Trial registrationACTRN12621000500853.

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Section: Resultsmentioning

confidence: 99%

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

et al. 2022

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“…Although the purpose of this intervention was to provide support for young people with SCIs and their caregivers during their transition from pediatric to adult health care services, it must be acknowledged that this transition occurs during a broader transition process—the transition to adulthood. The transition to adulthood and its implications have been previously discussed [ 9 , 35 ] and, as such, this was not the focus of this study. However, in the feedback focus groups, participants reported the need for more information on the general transitions, including study, employment, and independent living.…”

Section: Discussionmentioning

confidence: 99%

“…Although the authors acknowledge that individuals with neural tube defects share many of the same clinical characteristics and complications as those with SCIs, these individuals also demonstrate distinct features [ 23 ]. Research on HCT also typically focuses purely on SCIs [ 9 ] or spina bifida [ 24 , 25 ], with children and young people with spina bifida reported as a separate group supported by their own services. As such, this study focused specifically on young people with pediatric-onset traumatic or nontraumatic SCIs.…”

Section: Methodsmentioning

confidence: 99%

“…Similar to other young people with chronic conditions, young people with SCIs face many barriers and facilitators in their transition to adulthood with regard to both health care services and normative life milestones such as education, employment, social participation, and independent living [ 9 ]. A study conducted in the United States on 23 young people with SCIs and their caregivers identified processes within health care that acted as both a barrier to and facilitator of the transition to adulthood [ 9 ]. Facilitators included health care support comprising the transfer of medical records, clear communication of transition timelines and expectations, referrals to adult services, and collaboration between the pediatric and adult settings.…”

Section: Introductionmentioning

confidence: 99%

“…Health care barriers to transition included complex adult services, limited resources, and minimal previous exposure to the adult health care setting. In particular, the study indicated that, when it came to health care, there was a need for more condition-specific education for local, nonspecialized health care providers; better communication among health care providers; and an accessible, concise, and comprehensive medical history [ 9 ]. Evidence on the availability of HCT interventions for young people with SCIs that attempt to address these transition needs is scarce, with only 1 Australian article offering an explanation of their HCT efforts [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

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Developing a Health Care Transition Intervention With Young People With Spinal Cord Injuries: Co-design Approach

Bray¹,

Everett²,

George³

et al. 2022

JMIR Form Res

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Background Successful transition from pediatric to adult health care settings supports long-term health management and better overall outcomes in all domains. However, young people with spinal cord injuries (SCIs) continue to report challenges and unmet needs during the transition process. Including end users in health care research and intervention design is paramount as interventions designed in this way better meet their specific needs and are often more innovative. Although studies have reported involving young people with chronic conditions in the development of health care transition (HCT) interventions, few details have been provided as to how this was achieved. Objective This study outlined the co-design and development of an HCT intervention to support young people with SCIs. It contextualized the co-design process, methods, materials used, and steps implemented from defining the problem to conceiving and designing the solution. This was accomplished by understanding and listening to end users’ needs and recommendations for HCT. Methods Using participatory methods, this qualitative study reports the co-design of an HCT intervention to support young people with SCIs and parents or caregivers. Two co-design workshops were conducted: one with young people with SCIs and one with parents and caregivers. Categories were defined through a hybrid deductive and inductive qualitative content analysis process that was informed by the Care Transitions Framework and guided the development of the HCT intervention. Following the creation of a prototype intervention, young people with SCIs, parents and caregivers, and key pediatric SCI stakeholders provided feedback on the intervention content and design in focus groups. Similar to the workshops, the focus groups were analyzed using a hybrid deductive and inductive qualitative content analysis process informed by the Care Transitions Framework. The Enhancing the Quality and Transparency of Health Research guidelines for qualitative research (Consolidated Criteria for Reporting Qualitative Research) were applied. Results Overall, 4 young people and 4 parents or caregivers participated in the co-design workshops. Key recommendations for the HCT intervention were that participants wanted a “one-stop shop” for all their transition information needs and an editable portable medical summary to take with them to appointments. On the basis of the analysis of participants’ recommendations from the workshops, it was determined that a website would be an appropriate hosting platform for the interventions. The focus group feedback on the design and content of the prototype website was extremely positive, with minor recommendations for improvement. Conclusions This is the first study to co-design and develop an HCT intervention in partnership with young people with SCIs and parents and caregivers. Although the study sample was small, it has shown that it is possible to meaningfully engage and empower young people with SCIs and parents and caregivers in the co-design of an HCT intervention. International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2021-053212

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Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents

Anikputa

Horner

2023

Health Care Transitions

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Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions

Cited by 7 publications

References 14 publications

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

Developing a Health Care Transition Intervention With Young People With Spinal Cord Injuries: Co-design Approach

Perceptions of transitional care needs of adolescents and young adults with special healthcare needs and their parents

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