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Helping adolescents with chronic conditions transition to adult care
4 November 2016
Moving on Up – A Practical Framework to Support Young Tasmanians with Chronic Conditions Transition to Adult Care
is a practical guide for health providers that outlines six stages of transitional patient care from infancy to young adults. It is designed as a self-managed program to help patients, their families and caregivers understand and develop the skills, knowledge and behaviours they need to manage their health when they reach certain milestones.
Of Tasmania’s total population of almost 515 thousand people, nearly 160 thousand are aged 0–24, with 40 per cent of the younger population living with a chronic condition, the
Moving on Up
framework reports. The program was initially created five years ago by the paediatric team from the
Tasmanian Cystic Fibrosis Service
, with practitioner Nicole Saxby spearheading the committee.
As the service evolved, Nicole says practitioners became aware of the need for consistent statewide resources with a statewide working party of multidisciplinary health professionals (cystic fibrosis clinical activity committee) established. From this, the working party created the online ‘cystic fibrosis clinician toolbox’, incorporating the Moving on Up program, which has been adapted to cover all chronic conditions.
‘The program is quite broad and looks at the major themes allied health professionals need to be aware of to help young patients with a chronic condition transition to adult care,’ Nicole says. ‘There is a growing body of evidence that children’s involvement in self-management leads to better health outcomes and quality of life, and a reduction in health service use. The Moving on Up program recognises that children can be active participants in their own healthcare, at any age.
‘For physiotherapists, they are encouraged to be interactive with patients from the very start, to ensure movement through body awareness during infancy through to more-complex cognitive tasks such as identifying symptoms of a respiratory exacerbation early and increasing physiotherapy accordingly during adolescence.
‘This program will be beneficial to all disciplines, as it combines a wealth of departmental knowledge from a range of multidisciplinary providers in setting milestones for better health outcomes.’
Nicole says the framework addresses a gap in Tasmania’s health services, as there had previously been limited research in this area of care. She is currently completing her PhD on children’s self-management at Flinders University in Adelaide. Her PhD involves the development of chronic condition self-management support processes that are tailored to the needs of children with asthma, cystic fibrosis and type 1 diabetes mellitus. Nicole is an Advanced Accredited Practising Dietitian and has been coordinating the Tasmanian paediatric cystic fibrosis service since 2010.
‘Transition is a process, not simply a transfer of care; it occurs over time and it is different for each young person. To get the best “best practice” guidelines we pooled the resources of clinical experiences, such as doctors, physios, nurses, dietician and social workers to determine what a child is likely to understand and manage their chronic condition according to their age,’ she says. ’As the child gets older, they will be enabled to understand and access the services that they will need in their adult lives.’
Examples of conditions affecting young people include cancer, cystic fibrosis, eating disorders, asthma and a range of developmental disabilities. There are six key transition stages that health services need to recognise to help build lifelong and age-appropriate care. Each stage also has resources for family-centred education, which includes healthcare goals. The toolbox also provides templates to manage correspondence.
The framework stages are:
Stage 1: infancy (self-management support directed at family/caregivers)
Stage 2: pre-school years (begin child self-management skill development by encouraging participation in own healthcare behaviours)
Stage 3: primary school years (the introduction of independent healthcare behaviours and self-care)
Stage 4: early adolescence (active preparation for transition, involving provision of health education, self-management support and increasingly spending time with the adolescent without their family/caregivers)
Stage 5: late adolescence (active transition phase, primarily addressing the young person in healthcare interactions and encourage them to be independent in their healthcare)
Stage 6: young adulthood (signifies the need to move to adult healthcare services; independent healthcare behaviours and self-care; acceptance of chronic condition).
‘The goal is to link patients with adult health professionals early in their transition process, so they feel comfortable with the differences in service provisions when the transfer occurs,’ Nicole says.
The Moving on Up framework will be made available to target users via
Tasmanian Health Service
websites and the
primary health network
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