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Encourage autonomy

What is autonomy?

Autonomy is the ability of a person to act on their own free will. When a child has autonomy, even in small ways, it helps build his confidence, self-esteem and independence.
Autonomy is a critical part of learning for all children.

In most children (even toddlers and preschoolers), key ways to encourage autonomy include:

  1. explicitly role modeling desired tasks,
  2. encouraging your child to try tasks that he/she has not done before,
  3. offering realistic choices,
  4. respecting their efforts to complete the task.

But what about the child who has special medical needs?

Building autonomy is especially important for the child with chronic health issues or care needs. This child may feel powerless because he/she has to follow so many “rules” set by others, like his/her parents, nurses and doctors. If we let this child participate in his/her care, he/she has the chance to learn and understand the care better. This helps him/her feel more in control and helps build self-esteem. Ultimately, these are the characteristics of a resilient child, one who can face new challenges in a positive way.

For the child that must have certain regular care (eg, tracheostomy or gastrostomy care), you can offer choices related to the care (see table below for more details) and perhaps, just as importantly, you can offer your child lots of reasonable choices in the other areas of their daily life (eg, which toy do they wish to play with, which pair of socks to wear, etc).

Some children do have limited autonomy, usually because they are unable to understand or because they do not have the motor control or strength to carry out tasks; even so, these children can be offered realistic choices in a way that matches their abilities.

Have a look at some of the examples below to get you started. Talk to your health care team to find specific suggestions for your child.

 


Encouraging autonomy: some examples by developmental stage

Young infants

Role modelling tasks

Obviously, young infants cannot do any of their own care. However, parents can start “teaching” their infant by using predictable routines (eg, tracheostomy care always after the morning bath) and by talking to their infant in simple language (eg, “Now it’s time to suction your tracheostomy”). Read “preparation” in the Pediatric approach for more details.

Encouraging participation in tasks

A young infant may “participate” by staying in a certain position so that care can be provided easily (eg, lying swaddled on their back and sucking on a soother).

Offering reasonable choices

Parents make choices on the behalf of their young infant (eg, choosing a positioning method or choosing a distraction method.

Parents can set the stage for their child’s next developmental stage by exploring different choices of distraction and talking to their child in simple language about the choice (eg, “Let’s try using the soother today while I hook up your central line”).

Older infants and toddlers

Role modelling tasks

If you have already been talking to your child in simple language about the required care, role modeling tasks using medical play is an excellent tool to try next.

Encouraging participation in tasks

Start with simple, easy tasks, like holding on to a piece of equipment that is required for the child’s care (eg, holding a piece of gauze).

Remember: Be patient! At first, when your child “helps” with his or her care, the process will take longer. A young toddler may put that piece of gauze in their mouth! This is a chance to give your child gentle feedback and to try again (“No, don’t put the gauze in your mouth; let’s try again with a clean piece”). At this age, children are starting to learn through trial and error.

Don’t forget to give positive feedback and to recognize your child’s strengths and successes.

Offering reasonable choices

There are lots of choices that children in this age group can be offered. Read How to offer realistic choices for more details.

Always consider what your child can do/decide instead of what they cannot do; children learn best with a positive perspective.

Be careful not to fall into the “open ended choice” trap. For example, don’t ask your child if he/she wants to have their tracheostomy suctioned; he/she might say NO! Instead, ask whether he/she wants to sit or lie down, while the tracheostomy is being suctioned.

Preschoolers

Role modelling tasks

This is an excellent time to try medical play as a powerful way to role model the required care and to explore your child’s perceptions and reactions to the care that they need. Children in this age group learn through play.

Encouraging participation in tasks

Slowly give your child a few more simple tasks (eg, holding pieces of equipment, helping clean around a G tube site, drinking medicine from a small cup…).

Your child may be able to practice some tasks through medical play (eg, helping to remove tapes from a dressing or helping to apply  a new dressing bandage); this will give him/her more confidence when he/she help do this care on him/herself!

Offering reasonable choices

By this stage, young children have definite preferences!

Let your child practice making choices in the non medical parts of their lives, as often as you can!

Make sure that the choices that you offer your child are simple and clear (eg, wear the green socks or the blue socks) and respect the choice that they make.

It is sometimes hard to see your child struggle with a choice that they have made (eg, trying to put on their shoes themselves) but this is the most powerful way for them to learn and grow as individuals.

Give them a chance to complete the task themselves, knowing that it will likely take longer and may involve some frustration.

If your child is struggling with a task, resist the urge to “just do it yourself”, while this might get the shoes on quickly; it is teaching very negative lessons to your child: that he/she was not good enough to do the job, that it is not worth trying again if the parent just ends up doing it… This is not what we want to teach our children!

Instead, try to offer support so that he/she can complete the task him/herself, for eg, “Sometimes it can help if you try…”

School-aged children

Role modelling tasks

While medical play is still very useful in this age group, as children mature, you can use direct modeling more and more. For example, for the child who needs intermittent urinary catheterization, the parent could use the materials included in care practice and go through it with their child to explain the procedure. A good rule of thumb is to keep explanations simple and as visual as possible; this is helpful even for adults.

Encouraging participation in tasks

As your child participates more and more with his/her care, your child gains a sense of being more in control. This helps reduce stress and build confidence.

Continue to engage your child in the needed care, adding tasks and responsibilities slowly and with positive feedback along the way.

Don’t be discouraged if it takes your child some time to master tasks. Each child develops at their own pace and every step forward builds self-esteem.

Offering reasonable choices

Continue to offer realistic choices to your child, both as part of their medical care and in their regular activities.

Children in this age group learn powerfully from consequences: that is, if they choose option A, then X is likely to happen; if they choose option B, then Y is likely to happen…

You can start to highlight the connection between choices and consequences, that is, the pros and cons of decisions. This teaches children problem solving skills that they will use throughout their lives.

Adolescents

Role modelling tasks

Demonstration of tasks and reinforcement of information with written or visual materials works well in many adolescents. Peer learning/mentorship from an older adolescent can be especially powerful in this age group.

Encouraging participation in tasks

Adolescents naturally struggle with independence and a search for autonomy as they move towards becoming adults. Those that have experiences of chronic illness and restricted autonomy may be especially challenged during this developmental stage.

Some adolescents can be sad, frustrated or angry about having care needs. If your previously collaborative teenager is now refusing care or struggling in another way, please speak to your health care team.

Offering reasonable choices

Again, offering realistic choices are the best way to build autonomy; this is true in adults also!

Adolescents who have had experience with making choices (and experiencing the consequences!) are better prepared for the turbulence of puberty.

We recommend that all families of adolescents with chronic medical conditions talk to their health care team (with their adolescent!) about navigating this stage and preparing for the transition to adult care.


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