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Basics for parents and carers

  • Information for parents and carers of young people transitioning from paediatric to adult health services.

    ‘A purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented healthcare systems’
    Society of Adolescent Medicine 2003

    Adolescent Transition is an important process for you as a parent/carer. You will be encouraging your young person to look after their own healthcare to the best of their ability and become if able, more independent. Your involvement in this process is important as it will help you o support them during this time of change. We have developed some information on a range of topics which are also available on The Royal Children’s Hospital (RCH) Transition website, designed to help support you and your son/daughter.

    Aims of transition

    These include:

    • Providing high quality healthcare which is appropriate for your son/daughter’s age, culture and development. It is individualised, flexible, responsive and relevant to their needs
    • Helping your son/daughter to develop skills in communication, decision-making, assertiveness, self-care and self-advocacy
    • Empowering your son/daughter to be more independent with their healthcare (if appropriate) and have a greater sense of control over the process
    • Maximising your son/daughter’s capabilities to live well and to achieve their goals (educational, vocational, social) regardless of their condition or disability
    • Providing support and guidance for you as the parent/carer

    What does transition mean for you?

    Transition is an important process for you. Your role as parent or carer of a young person who is progressing into adulthood may be evolving and changing during this period. This process will provide you with practical assistance and guidance to help prepare you and your son/daughter for the move to adult health care. Discussions may include:

    • Knowing what to expect with the transfer process and your role within this
    • Knowing what systems or supports are available to you and your son/daughter
    • Adjusting to your son/daughter/s growing independence during this period, as appropriate 
    • Putting in place practical measures such as establishing links with a good General Practitioner (GP) in your community or investigating possible funding implications
    • Exploring your son/daughter’s choice of adult service providers (in consultation with your son/daughter’s medical team/s)
    • Addressing potential differences in adult health services, differing processes and expectations
    • Developing confidence in the new medical team/s and in the transition process

    Transition phases

    There are four general phases for an effective transition process.

    Introductory/Planning Phase (12–15 years approximately)

    You and your son/daughter will be introduced to the concept of transition, starting the information exchange, and assessing their knowledge of their medical condition and how to manage it. This is when you may be assisting your son/daughter to become more independent if appropriate. 

    Preparation Phase (15–18 years approximately)

    You and your son/daughter will develop a transition plan and be assigned a transition lead (person who will help to manage the transition process). During this phase, confidentiality, rights and self-advocacy will be explored and you and your son/daughter may:

    • Have the opportunity to meet your new adult care provider/s prior to transfer, either informally or within a combined transition clinic with your RCH and adult care team/s
    • Develop greater knowledge of the options available to you and your son/daughter 
    • Further refine the transition plan and goals within this
    • Receive correspondence from the RCH addressed to your son/daughter

    Transfer Phase (18–19 years)

    Your son/daughter’s readiness to transfer will be assessed and all relevant information will be sent to your son/daughter’s new adult care team/s either via a letter, by phone or face-to-face. You will receive a copy of this letter too. Your son/daughter may have their last visit with their RCH team/s and you will meet and start having appointments at the new adult health service/s. 

    Evaluation Phase (6–18 months following transfer)

    You and your son/daughter have the opportunity to provide us with feedback about the transition and transfer process and your experience. This helps us to improve the process.

    Key points

    • You and your son/daughter will be included in the transition planning process
    • Know what you and your son/daughter can do to contribute to the transition process and plan for the transfer
    • Have the contact details and information (if available) about your son/daughter’s new adult health care service/s before you transfer – know who to contact if you have any questions or concerns during this period
    • Explore opportunities to meet your new care team/s or visit the adult health service before you transfer
    • Request a copy of the referral letter at your last RCH appointment (and any other relevant medical documentation)