Impact of Early Personal Resources on Long-Term Psychosocial Outcomes After Moderate-to-Severe Traumatic Brain Injury: A Systematic Review.

OBJECTIVE: To investigate the relationship between preinjury or early personal resources and long-term psychosocial outcomes following moderate-to-severe traumatic brain injury (TBI) and examine evidence for the stability of personal resources over time. METHODS: The review protocol was registered with the International Register of Systematic Reviews (PROSPERO, Registration No. CRD4202341056). A search of PsycINFO, Cumulative Index to Allied Health Literature (CINAHL), MEDLINE, Scopus, and Web of Science was conducted from inception to February 23, 2023, for longitudinal studies involving adults with moderate-to-severe TBI that examined: (1) the relationship between preinjury or early personal resources (measured ≤6 months postinjury) and later psychosocial outcomes or (2) stability of personal resources over time with a minimum reassessment interval of 3 months. Two reviewers independently assessed eligibility and rated methodological quality of studies using a checklist informed by Strengthening the Reporting of Observational Studies in Epidemiology. RESULTS: A narrative synthesis was conducted on 14 eligible articles summarizing 12 studies (N = 826). Nine studies examined the impact of preinjury or early personal resources on long-term psychosocial outcomes, most typically at 12 months postdischarge. Out of 9 studies 7 indicated that self-reported preinjury or early personal resources, including productive coping, higher self-esteem and resilience, and lower neuroticism, were associated with better psychosocial outcomes. Evidence from 7 studies examining the stability of personal resources over time was generally mixed, with personality changes (eg, neuroticism, conscientiousness, and extraversion) more evident from informant ratings than self-ratings. CONCLUSION: Preinjury or early personal resources may influence later psychosocial outcomes after TBI. Further research is needed to investigate the stability of personal resources and factors mediating or moderating change across the adjustment trajectory.

Feasibility and Acceptability of a Codesigned Health Care Transition Intervention for Young People With Spinal Cord Injuries.

Background: Due in part to medical complications, adults with a pediatric onset spinal cord injury (SCI) are at higher risk of experiencing dissatisfaction with life and lower perceived physical health when compared to their peers with no disability. To support the prevention of medical complications, young people with SCI must successfully transition to adult health care. Health care transition (HCT) interventions can support young people with chronic conditions in their move to adult health care. Objectives: To evaluate the feasibility and acceptability of a web-based HCT intervention codesigned with young people with SCI and parents/caregivers. Methods: Semi-structured individual interviews were conducted online with young people with SCI and parents/caregivers who transitioned or were preparing for the transition from pediatric to adult health care. Interviews were also conducted with health care professionals. The interviews were analyzed using a hybrid deductive and inductive qualitative content analysis process. Feasibility and acceptability were measured using Bowen and colleagues' framework, which includes eight focus areas: acceptability, demand, implementation, practicality, adaption, integration, expansion, and limited efficacy. Results: Overall, participants responded positively to the intervention and believed that it would be useful to young people with SCI and parents/caregivers. Two areas of Bowen et al.'s framework, implementation and integration, require further consideration in terms of how to embed the intervention into the current transition process. Conclusion: This study found the HCT intervention to be an innovative approach to support young people with SCI and their parent/caregivers that demonstrates promise in the areas of feasibility and acceptability.

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

OBJECTIVES: Healthcare 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 PARTICIPANTS: This 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. RESULTS: The 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. CONCLUSION: Providing 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 REGISTRATION: ACTRN12621000500853.

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

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.

Co-designed healthcare transition interventions for adolescents and young adults with chronic conditions: a scoping review.

PURPOSE: To determine the scope of published literature on healthcare transition (HCT) interventions that have been co-designed with adolescents and young adults with chronic conditions, and to undertake feasibility assessments. METHODS: Using Scopus, CINAHL, Medline-Ovid, Cochrane and PsycINFO databases, publications that included a HCT intervention to support paediatric to adult healthcare transition were included. Study location, design, population, description of the intervention, co-design methods, feasibility evidenced using Bowen and colleagues' framework, and outcome measures were extracted for review. RESULTS: A total of 21 studies were included, relating to 17 co-designed HCT interventions that ranged across multiple medical specialties. There was no standard HCT intervention; characteristics, format and delivery mode varied. Only three studies reported a detailed description of the co-design method(s) used and none reported on the facilitators or barriers. Among the studies, five of Bowen and colleagues' eight dimensions of feasibility were measured. CONCLUSIONS: Despite the co-design process being neither described or evaluated extensively, all co-designed HCT interventions included in this review were considered to be feasible. Nevertheless, HCT interventions varied in their format and delivery method making it difficult to compare between them. Furthermore, interventions were often condition-specific and not representative of the extensive range of chronic conditions.Implications for RehabilitationHealthcare transition interventions can improve adherence to care, health outcomes, ongoing rehabilitation, and quality of life of adolescents and young adults with chronic conditions.Healthcare transition interventions should maximise long-term functioning and prioritise rehabilitation aimed at enhancing independence and self-management skills, while reducing hospitalisations.The engagement of individuals with lived experience in the co-design of interventions has been strongly advocated as it brings unique knowledge and experience to the research process.Minimal attention has been given to the involvement of adolescents and young adults with chronic conditions in the development of healthcare transition interventions, however, healthcare transition interventions co-designed with adolescents and young adults with chronic conditions are both feasible and acceptable.

Protocol for developing a healthcare transition intervention for young people with spinal cord injuries using a participatory action research approach.

INTRODUCTION: While healthcare transition (HCT) interventions are recognised as an important area in paediatric rehabilitation, there has been limited research focusing on young people with spinal cord injuries (SCI). In this study, researchers will collaborate with young people with SCI and their parents/caregivers to develop, implement and evaluate the feasibility and acceptability of a HCT intervention aimed at supporting young people with SCI during their transition from paediatric to adult healthcare services. METHODS AND ANALYSIS: A participatory action research (PAR) approach will be used to co-develop the HCT intervention with young people with SCI aged 14-25 years and their parents/caregivers. Three phases will be conducted to address the five objectives of this study. Phase 1 will use semi-structured interviews to explore young people and parent/caregivers' experiences of HCT. In Phase 2a, both young people and parent/caregivers will be co-researchers. They will be included in the analysis of the interviews and will be asked to participate in co-design workshops to inform the development of a prototype HCT intervention. In Phase 2b, using focus groups, feedback on the prototype HCT intervention will be collected. In Phase 3, the refined prototype HCT intervention will be implemented, and young people with SCI and parent/caregivers will evaluate the feasibility and acceptability of the HCT intervention in semi-structured interviews. A reference group, including stakeholders and end users, will be consulted at different time points. ETHICS AND DISSEMINATION: The study has received ethics approval from Western Sydney University Human Research and Ethics Committee (H14029). The researcher will use the results of this study as chapters in a thesis to obtain a Doctor of Philosophy degree. The findings will be disseminated via publication in peer-reviewed journals and will be presented at local, national or international conferences. TRIAL REGISTRATION NUMBER: ACTRN12621000500853.