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

Bray, Emily Alice; George, Ajesh; Everett, Bronwyn; Salamonson, Yenna; Ramjan, Lucie M.

doi:10.1136/bmjopen-2021-053212

Cited by 9 publications

(9 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

Section: Methodsmentioning

confidence: 92%

“…This study informs a larger project that aims to co-develop, implement and evaluate an HCT intervention to support young people with SCI during their transition from paediatric to adult healthcare services in New South Wales (NSW), a state within Australia. 27 More details on what this transition process looks like for young people with SCI in NSW can be found in an evidence series published by the Agency for Clinical Innovation. 28 Few studies have outlined the process, barriers and facilitators to co-designing HCT interventions with young people with chronic conditions and disabilities, yet HCT interventions designed with young people are both feasible and acceptable.…”

Section: Methodsmentioning

confidence: 99%

“…Non-probability sampling, using a combination of purposive, convenience and snowball techniques, were used to recruit participants (see Bray et al 27 for full details). The inclusion criteria were that the individual be either a young person aged between 14 and 25 years who had acquired a paediatric-onset SCI (16 years or younger) or parents/caregivers of young people with a paediatric-onset SCI.…”

Section: Methodsmentioning

confidence: 99%

“…43 Paediatric-onset SCI not only places a strain on society but it also affects the physical, psychological and emotional development of the young person and the daily life of their families. 42 44 Recruitment and participants Non-probability sampling, using a combination of purposive, convenience and snowball techniques, were used to recruit participants (see Bray et al 27 for full details). The inclusion criteria were that the individual be either a young person aged between 14 and 25 years who had acquired a paediatric-onset SCI (16 years or younger) or parents/caregivers of young people with a paediatriconset SCI.…”

Section: Contextmentioning

confidence: 99%

See 3 more Smart Citations

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

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Methodsmentioning

confidence: 92%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Contextmentioning

confidence: 99%

See 2 more Smart Citations

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

Self Cite

View full text Add to dashboard Cite

show abstract

“…The study protocol has been published elsewhere [ 18 ]. In summary, the 3 study phases were informed by the Care Transitions Framework [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

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

Self Cite

View full text Add to dashboard Cite

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

show abstract

A Multi-User Virtual Reality Social Connecting Space for People Living with Dementia and Their Support Persons: A Participatory Action Research Study

Flynn,

Koh,

Reilly

et al. 2024

International Journal of Human–Computer Interaction

View full text Add to dashboard Cite

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

Cited by 9 publications

References 28 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

A Multi-User Virtual Reality Social Connecting Space for People Living with Dementia and Their Support Persons: A Participatory Action Research Study

Contact Info

Product

Resources

About