None listed
Conditions
Brief summary
This project will develop and test a Queensland Transition Coaching Program to support young people aged 15–19 years with acquired brain injury (ABI) as they move from child to adult health and support services. The program will be co-designed with young people, families, clinicians and community services to ensure it reflects lived experience and meets the needs of Queenslanders. A pilot involving 60 participants from metropolitan and regional Queensland will focus on building confidence, independence and practical skills, including understanding ABI, self-advocacy, managing supports, navigating adult services and maintaining healthy lifestyles. Psychology support will be available to help young people engage with the program. Feedback from participants, families and clinicians will be used to assess whether the program is useful, accessible and appropriate, and to inform the development of a statewide ABI transition protocol, toolkit and training resources.
Interventions
Phase 1: Information Gathering - a comprehensive needs assessment will be undertaken with young people with ABI, caregivers, clinicians and stakeholders to understand transition experiences, identify service gaps and inform the development of a Queensland specific ABI transition model and resources. Please note Phase 1 is NOT an intervention. Phase 2: Co-Design. (Please note Phase 2 is not an intervention). Phase 2 is a structured co-design process to adapt evidence-based ABI transition programs for the Queensland context and develop the Queensland ABI Transition Model, Transition Protocol Toolkit, training resources, and implementation strategies. Who delivers it and their relevant expertise? - Project investigators and facilitators with expertise in ABI rehabilitation, co-design methodology, implementation science, and transition care. Participants include young people with ABI, caregivers, clinicians, service providers, and consumer representatives. How is it delivered? - Structured co-design workshops involving collaborative discussion, prioritisation activities, review of evidence, and adaptation of program components. How often and for how long? Three co-design workshops. Each workshop is anticipated to run for approximately 2 to 4 hours. Delivered over a 2-month period (Months 4-6 of the project). Where is it delivered? - Face-to-face at participating health service or community venues, online via videoconference, or using a hybrid format. Adherence (e.g. reminders, monitoring) - Workshop attendance will be monitored and participants will receive meeting invitations, agendas, and reminders. Workshop outputs and participation will be documented by the research team. Participants in Phase 2 will not be involved in Phase 3. Phase 3: Transition Program Implementation What is the intervention? - The Queensland ABI Transition Program, comprising structured transition support for adolescents with moderate-to-severe ABI moving from paediatric to adult services. The program is expected to include transition coaching, transition planning, educational resources, care coordination processes, clinician support, and use of the Queensland ABI Transition Toolkit developed during Phases 1 and 2. Who delivers it and their relevant expertise? - Paediatric Rehabilitation allied health clinicians with expertise in acquired brain injury and transition care, Providers will receive training in the Queensland ABI Transition Model and associated resources. How is it delivered? Individual transition coaching and planning sessions Care coordination activities - Individualised transition planning, referral facilitation, liaison with paediatric and adult healthcare providers, coordination of community supports, service navigation support, and monitoring of progress towards transition goals. Delivered throughout the intervention period as required Educational and self-management resources - study-specific educational materials and self-management resources developed through a co-design process, including worksheets, visual aids, transition planning tools, session summaries and health education materials to support transition readiness, self-management and service navigation. Provided throughout the intervention period. Communication and support involving adolescents, caregivers, and clinicians - Motivational Interviewing-based transition coaching, health education, goal setting, self-advocacy training, family support, service liaison and, where required, targeted psychological support. Delivered through one initial session, up to 12 coaching sessions over 6 months, and one follow-up session 3 months post-intervention. Delivery may occur face-to-face, by telehealth, or through a combination of both. How often and for how long? - The duration of the transition program for participants is approximately 9 months in total. The final frequency and duration will be determined through the co-design process. At this stage, participants will receive 1 initial session (up to 2 hours), up to 12 transition coaching sessions (typically 45-60 minutes with flexibility up to 1-2 hours per session) and ongoing care coordination, education and support activities as needed. There will also be 1 follow up session approximately 3 months after completion of the intervention period. The number and duration of contacts will be recorded and monitored during implementation. Where is it delivered? - Queensland Health outpatient and rehabilitation services, community settings, and participants' homes via telehealth where appropriate. Adherence (e.g. reminders, monitoring) - Participant engagement will be monitored through attendance records, completion of transition planning activities, and utilisation of program resources. Appointment reminders, follow-up contact from clinicians and Nurse Navigators, and routine monitoring of intervention fidelity will be used to support adherence. Phase 4: Translation and Evaluation The Queensland ABI Transition Program will be evaluated to assess its implementation, acceptability, feasibility and potential for wider adoption, with findings used to refine transition pathways, workforce training and future service delivery. Please note Phase 4 is NOT an intervention.
Sponsors
Study design
Eligibility
Inclusion criteria
Phase 1 and Phase 2 Young adults with lived experience of paediatric-acquired brain injury (ABI). Parents, caregivers or family members of individuals with paediatric-acquired ABI. Clinicians and service providers involved in paediatric or adult ABI care, rehabilitation or transition services. Community stakeholders with experience relevant to ABI transition care. Phase 3 Adolescents and young adults aged 15 to 19 years with moderate to severe paediatric-acquired ABI. Receiving or transitioning from paediatric ABI services in Queensland. Able to provide informed consent/assent, or have parent/guardian consent where required. Phase 4 Clinicians involved in delivery of the Queensland ABI Transition Program. Young people with ABI and caregivers who participated in and completed the Transition Program during Phase 3.
Exclusion criteria
Phases 1-2 and 4 Inability to communicate perspectives and experiences, either verbally or through augmentative and alternative communication (AAC). Insufficient English language proficiency to participate in interviews, focus groups or co-design activities. Phase 3 Not client of Queensland Paediatric Rehabilitation Service (QPRS) care based on service eligibility requirements. Age under 15 years Does not have moderate-severe ABI (as confirmed by QPRS doctors) Unable to meet program participation requirements