Carers and the transition from paediatric to adult healthcare
A birthday can bring relief, new independence and a series of practical losses. When a young person with disability turns 18, they may leave a familiar paediatric team, lose youth-specific supports and discover that adult waiting lists, referral rules and eligibility assessments work differently. Carers often absorb this disruption, arranging appointments, transport and explanations while trying to preserve the young person’s voice.
The project, A Qualitative Study of Carer Experiences in Transitioning Young Adults with Disability to Adult Healthcare, examines that hidden work. Rather than treating transition as a simple transfer between age-based services, it explores how families experience change, what helps them feel prepared and where continuity breaks down. The findings offer a practical lens for designing safer, more respectful pathways across Queensland.
Why the transition from child services matters
Paediatric teams often provide a single coordinated hub, with familiar clinicians and a developmental view of the whole family. Adult services are more distributed across general practice, hospitals, specialists, community disability providers and the National Disability Insurance Scheme (NDIS). Young people and carers can consequently become responsible for navigating gaps that were previously managed behind the scenes.
A transition works best when it is planned over years rather than weeks. It should build the young person’s confidence, support informed decision-making and retain essential relationships while new supports are established. Carers need their own support too; sustained coordination can become exhausting, especially when the same person is driving, translating, advocating and keeping records.
What the qualitative study reveals about carer experience
A qualitative approach is valuable because transition is not captured fully by clinic attendance or a yes-or-no satisfaction measure. The study focuses on the experiences of carers, including the emotional transitions, practical decisions and advocacy involved when a young adult moves into adult healthcare. Their accounts place everyday service design at the centre of the research question.
Taken together, the themes point to four connected needs: continuity of information, clarity about responsibility, recognition of the young person’s goals and support for carers’ wellbeing. Unclear handovers create avoidable stress, while respectful communication can turn uncertainty into manageable next steps. These themes are best understood in context, since each family’s disability, culture, location and available informal support differ.
Carer experiences in everyday Australian life
Carer experiences are shaped by daily demands that clinical audits often miss: navigating portals, booking multiple appointments, finding accessible transport and helping a young person decide whether to accept a recommended service. A brief appointment can require travel, preparation, pain management, communication aids and a follow-up call to the GP or specialist.
The network’s work on gestational diabetes guidance offers a useful example of how collaborative pathways can keep families engaged when health needs and responsibilities change.
Recurring experiences
- Carers become coordinators, navigators and advocates across several organisations.
- Information changes at handover points, causing repetition and confusion.
- Young people balance growing autonomy with a wish for family support.
- Carers feel grief, uncertainty and hope as responsibilities change.
Helpful responses
- Assign a named transition coordinator and document who is responsible.
- Provide accessible information in plain English and preferred communication formats.
- Include the young adult’s goals, consent and support needs in every plan.
- Offer respite, peer support and flexible appointment options.
Navigating Queensland’s health and disability systems
Queensland families often move through a mixed market of public hospitals, Medicare-subsidised GPs, private specialists and community providers. Someone seen at a Brisbane tertiary hospital may need a GP referral to access an adult clinic, then join a specialist waitlist. Public services are broadly available, but access varies by urgency, postcode and capacity, making continuity dependent on careful navigation.
The NDIS adds another layer. It can fund assistance, community participation, transport and equipment, while Medicare and public hospital services remain central to diagnosis and treatment. Confusing this boundary can produce duplicate requests, unexpected costs or gaps. A single contact who understands both systems is therefore more valuable than a folder of disconnected referral forms.
Digital options help when access is difficult. My Health Record supports information sharing, eHealth Queensland connects public services, and telehealth can reduce travel for some consultations. Yet digital access requires reliable connectivity, devices, support and privacy protections; these conditions vary across metropolitan, regional and remote locations. A phone call remains a legitimate and often safer option for many families.
Place matters. Young adults leaving services around Cairns, Townsville or rural Queensland may travel further for age-appropriate care than peers in Brisbane. Local communication also matters: Queensland families often respond well to direct, conversational language, such as being told, “Let’s get this sorted,” provided clinical terms are then explained. In Brisbane’s diverse communities, interpreters and Aboriginal and Torres Strait Islander health services should be offered deliberately rather than left to families to request.
Communication, consent and supported decisions
Good handover information is concise, current and organised around the person rather than the service. It should identify goals, medications, communication methods, accessible format preferences, consent arrangements, emergency contacts and the next appointment. Carers can hold essential knowledge, but the young adult should lead decisions to the extent of their capacity, with supported decision-making where needed.
Communication is also a governance issue, not merely an administrative one. Training staff to ask how a person wants to be spoken for, whom they wish involved and how they prefer information delivered can prevent conflict between family members and clinicians. Teams can strengthen this work through shared education and interdisciplinary learning; online EVS resources provide one example of an online setting for professional development and evidence exchange.
Participation beyond the clinic
Adult healthcare should support a life, not just a treatment plan. That includes accessible transport, social activities, work or study, equipment that fits changing bodies and opportunities to make choices outside the family. Participation exposes barriers that a clinic appointment can hide, particularly when a young adult wants to attend an event independently but cannot obtain suitable support.
The value of practical adaptation appears well beyond medicine. OneHome’s review of Dutch go-kart adaptations shows how simple modifications can widen participation for people with disabilities. Queensland services can apply the same principle to community outings, housing, workplace adjustments and transport by involving disabled people in design rather than prescribing solutions from the outside.
Turning evidence into coordinated action
Services can translate the study into a regional transition protocol with shared criteria, a portable health summary, a named care coordinator, explicit consent processes and a scheduled follow-up after the first adult appointment. Consumer advocates, disability organisations, GPs, hospital teams and education providers should review the protocol with young people and carers before implementation.
Organisers and clinicians should use the study’s findings to build those partnerships now, share the transition protocol across primary and specialist care, and involve Brisbane Diamantina Health Partners in convening researchers, health services and community advocates. Start with one local service: map a young adult’s handover, identify the gaps, appoint a coordinator and invite the young person and their carers to review the first version.
