Advice to parents

This page covers:
– Advice to parents and caregivers
– Points to consider
– Resources
– References

Advice to parents on supporting their young adult through transition

The transition from child to adult healthcare may be a challenging time for young people with cerebral palsy, but also for parents or caregivers. Until this point, the care giver has managed appointments, equipment, medication, and has been the main contact when talking with healthcare providers. It is normal to feel scared, sad or even relieved during this time, and it is important to remember that you are not alone as you consider how to enable the young person to take more responsibility for their own healthcare.

In order to best prepare for this transition, it is important for you as the care giver to be involved in the process to encourage your child through this time of change. Preparation for transition should begin in the early teenage years. Every teen is different – find out what works for your child and understand that some will become more independent while others will need support and guidance. There is no one-size-fits-all approach to transition: support should be based on the individual’s strengths, and consider what is “positive and possible for the young person”. Some people will still need a lot of support in adulthood and others will be independent – no matter which applies to your loved one, there are many things you can do to support their transition.

It is normal to feel scared, sad or even relieved during this time, and it is important to remember that you are not alone.

In order to prepare for transition, consider what tasks you currently take on that you could support your young person to tackle alone, and talk to them about it. Here are 5 key areas for discussion:

a. Everyday tasks – Consider the tasks you currently complete for or with your young person. This could be choosing their outfit for the day and helping with dressing, preparing meals or organising transport to an activity. Which of these tasks could you support your young person to tackle alone?

b. Assistive equipment – Whether it is a mobility aid, grab rails in the bathroom, the use of a tablet or touch screen, non-slip plates or adjustable counter-tops, there are many assistive devices available to aid independence for young adults with CP. Discuss with your child what they think would help them to be more independent.

This website gives examples of technology that may help improve independence.

c. Healthcare – Until this point, it is likely that you have taken responsibility for all medical appointments and medication for your young person. By preparing early, the experience of transition from child to adult healthcare could progress smoothly. You could start to teach your child how to order and pick up medication, or encourage them to prepare one question to ask at their next medical appointment.

d. Finances – As daunting as it may seem, managing your own finances is an important aspect of developing independence in adult life. For some, this could mean learning how to prepare and stick to a budget, or how to pay bills, while for others it could mean carrying a wallet and choosing what to spend their money on. Consider what you currently do to manage your young person’s finances and talk about how they could take on some or all this responsibility.

e. Housing – there are many options to consider when a young person reaches an age where they wish to live independently. This may mean moving out of the family home into their own place, either alone, with daily support or with friends. Living independently is also possible while remaining at home, as tasks which are currently managed by the care giver may be undertaken by the young person e.g. cooking or preparing a meal, or completing self-care tasks independently.

Points to consider

• Start preparing for transition early – this may include searching for opportunities to get involved in new age-appropriate clubs or social activities, or finding a support group either for yourself or the young person. Early preparation will help both you and your child through the experience, and could improve their participation in adult life (6).
• Transition can be a daunting time, it’s also an exciting one – there may be new opportunities for education, friendship and independence, or the young person may start a new job or take up a new hobby (7).
• Do not be afraid to ask questions – remember you are not expected to know exactly what happens next! Nobody has all the answers, but a good place to start is with your child’s current healthcare professional. Other parents who are currently going through the same experience and those who have been through it in the past could also be an excellent resource (8).
• Any progress towards independence is good progress – progress may feel very small, and sometimes may be backwards, but the process is a long one and with the right support you and your child will successfully navigate the transition period (1).

Resources

The National Institute for Health and Care Excellence (NICE) guidelines website has a useful page with information on what to expect when transitioning from child to adult healthcare.

References

1. https://www.albertahealthservices.ca/y2a/Page16379.aspx
2. CanChild Parent/Caregiver Reference Guide [transition resources]
3. Royal Children’s Hospital Melbourne – Basics for parents and carers [transition resources]
4. NICE NG43, 1.1.3
5. Perth Children’s Hospital – For parents and families [transition resources]
6. Van Gorp M, Roebroeck ME, Van Eck M, et al. Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study. Disabil Rehabil. 2020;42(22):3162-3171.
7. Cerebral Palsy Guide – https://www.cerebralpalsyguide.com/community/transition-into-adulthood/
8. CP Scotland Advice from Parents – Cerebral Palsy Scotland