How can you, as a parent or caregiver, help your child cope with having a chronic or complex medical condition? How can you help yourself and the other members of your family? It may be especially difficult if you are:
- sad and/or feeling helpless,
- sleep deprived or stressed,
- caring for other children,
- a single parent,
- having other challenges, such as financial stresses.
Wherever you are coming from, there are ways that you can help your child adapt and cope with a medically complex condition. Remember that your health care team is there to support your child and family; let them know about your unique situation.
Here are some suggestions that have helped other families like yours:
- Educate yourself about your child’s illness and treatments
- Explain the illness (and the needed treatments) to your child
- Prepare your child for medical procedures and required care
- Maintain regular, age-appropriate routines
- Encourage your child’s autonomy
- Maintain family routines
- Take care of yourself!
1. Educate yourself about your child’s illness and treatments
Knowledge is power! The more that you know about your child’s condition and treatments, the more you can help your child.
- Ask questions and ask for written or electronic materials on your child’s care. Don’t be shy to ask for a specific diagnosis to be written out or explained to you in detail.
- Ask your health care team for a “care plan” that describes daily care and sick day care.
- Know your child’s medications, what each one is for and what the common side effects are.
- We recommend keeping a notebook, binder or collapsible file folder to keep track of information.
- Many hospitals have family resource centres where a staff member can help you find further information. In your search for information, we hope that you are able to find a parent support group.
2. Explain the illness (and the needed treatments) to your child
Sharing age-appropriate information with your child helps him in two key ways: to understand what will happen to him (providing a sense of predictability) and to have the opportunity to have some control over the situation. Parents may not be sure how to talk to their child about illness and may avoid talking about it altogether with the intention of protecting the child. In the absence of information, children may imagine many false ideas, like thinking that their illness or treatments are a punishment for misbehaviour.
Here are some tips to get you started:
- Consider the developmental stage of your child and phrase information accordingly. For example, young children need short, concrete explanations in simple language.
- Be honest and straightforward. Even young children can tell when their parents are not quite telling them the “whole story”.
- Don’t make it too complicated. Usually children ask simple questions and it is best to answer in the same way – short and simple… then wait for the next question! One step at a time…
- Keep the conversation open. Children benefit greatly from talking about their illness with their parents. Your child trusts you most. If your child understands that he/she can come to you with questions, you are helping them cope and adapt.
Parents sometimes think that it is better “not to worry the child in advance”. Others say that if they did tell their child about a procedure or intervention, their child might be very upset and refuse to participate. This latter concern might actually be true but it is far less traumatic to the child to express himself in advance of the intervention rather than just before.
Studies show that children who have the chance to use and develop coping strategies are much more likely to adapt to their care needs with less stress and more happiness! As we have said before, it is important that preparation is offered in an age appropriate way. “The pediatric approach” discusses preparation in detail.
4. Maintain regular, age-appropriate routines
Children of all ages (and most adults!) thrive on predictable routines. Even the simple routines of sleep, play and meal times encourage development and reduce stress.
Participation in developmentally appropriate activities is just as important as medicines or treatments in optimizing your child’s overall quality of life. Limiting unwanted behaviours, through discipline is also important. Parents are sometimes hesitant to discipline their chronically ill children, not realizing that discipline actually helps children develop and provides structure and security.
The most effective techniques include: praising appropriate behaviour, time-outs for young children and restriction of privileges for older children. Discipline won’t change your child’s behaviour unless it is predictable and consistent.
5. Encourage your child’s autonomy
The evidence in child behaviour and development shows that children who have responsibilities and choices adapt better to stressful circumstances. Giving children age appropriate responsibilities around care interventions or regular family life helps your child grow and cope. When your child fulfills an expected responsibility (such as helping to prepare for a care practice at home), don’t forget to notice and praise.
Encourage your child’s autonomy taking into account his/her capacities.
6. Maintain family routines
Just as it is important to establish and maintain healthy routines for your child with medical complexity, the same goes for parents, siblings and caregivers.
Start with the basics, like wake up times, sleep, play and feeding.
You may need to ask for help to build and maintain routines, especially if your child has high home care needs. Help can come from many different sources: your own network of family and friends, your CLSC, a support group, respite care or other services. Talk to your health care team about finding the help that is appropriate for your child and family.
Read more in “Prepare yourself/Organizing your day“.
7. Take care of yourself!
This is so important, we have an entire section devoted to it.
Families tell us that having a child with a chronic, complex or fragile medical condition is like being on a rollercoaster – blindfolded! We know that parents often put their own needs aside for the sake of their children but if your health is at risk, no one truly benefits. Children thrive best when their caregivers feel well and happy. You’re worth it!