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Information to help your child or teen become more independent and take control of their own health care.
Key points
- Help your child take control of their health care by gradually encouraging them to be more independent in various areas of their lives, at different ages.
- In allowing your teenager to gain some independence, both you and your teenager’s health-care provider will have to give up some control.
Becoming more independent is a normal part of development for teenagers, just like walking is for toddlers. Sometimes parents have difficulty with the idea of their teenager becoming more independent and responsible. This can be scary for parents, especially if they feel their teenager is not “ready.”
Gaining independence and becoming more responsible does not happen overnight. Children need plenty of time to practice these skills early in life, so that by the time they are teenagers, it is a normal part of the way they do things.
In order for your teenager to gain control and responsibility for their health, they need to first be given the opportunity. At first, they may not manage the way you would, but this is all part of learning! Be patient. Allow them to learn and even make mistakes. A lot can be learned from mistakes, if they are discussed openly and reasonably as opposed to being punished.
The following chart shows how you as a parent can help your teenager gradually gain more control. You need to take part in this just as much as your teenager does! By starting early, your teenager will learn to develop management skills without much pressure. The following chart is full of practical tips that you can use to promote your teenager’s independence.
| 8–11 years old | 12–16 years old | 17 years and up | |
|---|---|---|---|
| GENERAL |
Let your child make mistakes Teach your child to speak up for themselves and to express their wants and needs Help your child recognize their special talents and interests Recognize your child’s increasing need for independence |
Encourage your teen to: Advocate for themselves and ask questions if they don’t understand Talk about sexuality with someone they trust Look for older role models Talk to their health-care team about how they feel about their arthritis care Discuss dating issues with you and their peers |
Encourage your teen to: Make sure they are aware of their drug plan. If they are not covered by a drug plan, help them to find a suitable plan Become a mentor for younger children at school Begin thinking of themselves as a role model Discuss dating issues with you and their peers |
| SOCIAL |
Encourage hobbies, leisure, and physical activities Help your child make friends Support your child’s participation in community activities without parents where possible |
Support your teen in: Joining teams and clubs at school Getting involved in activities outside of school, such as camps Hanging out with friends Letting your teen choose who they would like to share details of their arthritis with |
Support your teen in: Participating in community programs for adults that match their interests Keeping in touch with friends from high school or camp and making plans with them Joining teams or committees at school |
| SELF CARE |
When you take your child food shopping, discuss diet needs and read labels together Teach your child their personal information, such as address, phone number, etc. Involve your child in preparing their medication. Use proper names of medications. Ask them why they are taking the drug Help your child reduce stress through art, exercise, music and journal writing |
Have your teen: Set up their own health-care routines, such as taking medications and getting lab work done Learn more about their special dietary needs when cooking Start to find their way around the community Plan ahead to fit health-care routines into their life |
Have your teen: Plan and prepare meals according to their diet needs Practice budgeting and banking skills Keep a record of tests, procedures and medications |
| EDUCATION |
Let your child do homework on their own as much as possible; wait for them to ask for your help Begin asking your child what they want to be when they grow up Encourage them to talk about the future |
Have your teen: Take part in meetings about their education and keep a record Get to know their school guidance counsellor Talk about career interests and set goals for college or university Find volunteer work or a part-time job Be able to explain their arthritis to teachers who need to know |
Have your teen: Register with the special needs office at college or university, even if they are feeling fine Go for career counselling, shadow someone at their job or attend a job fair Research their arthritis: meet others who have already transitioned to college or university Review their college or university workload: is it too much? |
| MEDICAL |
Ask your child what they know about their arthritis and fill in the gaps in their understanding Help your child to talk directly with the health-care team Prepare for clinic visits one week before appointments. For example, ask your child if there is anything they want their doctor to know, or if they have any questions to ask the health-care team Encourage your child to visit kid-friendly websites Create a |
Encourage your teen to: Discuss the eventual need for adult health care Attend part of their medical appointments alone Prepare a list of questions to ask the health-care team Start to set their own medical appointments Be knowledgeable about their health, including their diagnosis and symptoms they are experiencing Keep a record of their medical history, such as current weight, blood pressure, etc. Create or update their Take charge of their medications: keep a record of current medications, doses, side effects and whether they need prescription renewals Discuss birth control, pregnancy or parenthood, drugs, alcohol and smoking with the health-care team Know who to call in an emergency |
Encourage your teen to: Visit an adult health-care centre Get a summary of their medical record Update their Transfer to an adult health-care facility Learn the skills for good self-care and arthritis management Attend appointments alone, without a parent in the room Ask the paediatrician for a referral to a family doctor if they don’t already have one |
Think about some steps you and your teenager have taken or would like to take towards gaining independence.
In allowing your teenager to gain some independence, both you and your teenager’s health-care provider will have to give up some control. The following table is adapted from The Shared Management Model.
The table shows that early on, your child has no responsibility. They are completely dependent on you and the health-care team to manage their medical care. As your child grows older, they will gradually become more involved in their medical management. They will start to participate in decisions and discussions about their medication and treatment plans. As they become a young adult, they will need to become more responsible for their own health. Your role will be to gradually step back to allow your teenager to start managing their own health. Eventually they will become the CEO or boss of their health-care. At this point, your role is still very important, but instead of manager, you will move into the role of supervisor and consultant.
This model shows that this job cannot be achieved overnight. It needs to be gradual and encouraged by parents and health-care providers.
The age ranges below are general guidelines. Each child develops at a different cognitive and emotional pace and may be in one stage for longer than another child their age. Giving your child leadership responsibilities before they are ready can be harmful to your child’s development.
| Age and time | Health-care provider | Parent/family | Young person with arthritis |
|---|---|---|---|
| Birth–6 years | Major responsibility | Provides care | Receives care |
| 7 years–11 years | Support to parent/family and young person with arthritis | Manages care | Participates in care |
| 12 years–18 years | Consultant | Supervises care | Manages own care |
| 18 years and older | Resource | Consultant | CEO |
Shared Management Model (Kieckhefer & White, 2006)
A story of hope
“Our son was diagnosed with JIA when he was two years old. As Duncan got older, it was apparent that he needed to take ownership of his health. One of the ways that we did this was by filling up a “pill minder” box with his pills for the week and then handing it to him to look after taking them. This was helpful for me as I was handing over some of the responsibility to Duncan but was still able to see if all his medication was being taken. Gradually, Duncan took over managing all aspects of taking his medication and knows that he has control of how he feels.
We also encouraged Duncan to take charge of his time with his doctor. Since he was diagnosed when he was very small, I was the one who conversed with his doctor based on his input to me and my observations. As Duncan got older, my input became less. There was one occasion, when we were on our way home from an appointment, that Duncan asked me why I hadn’t asked the doctor about a concern he had. It was then that we both realized that it was his responsibility to make sure that all of his concerns were discussed and questions answered, especially since our next appointment wasn’t scheduled for another six months!
Most people don’t know that Duncan has JIA and if they do find out, they are quite surprised. There are times, however, when his knees are sore and he is not able to participate as fully as his friends. This can be discouraging! As parents, we try to be as positive and supportive as we can and give him a little extra tender loving care.”
– Ann, a parent