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Table 1 Application of autonomy support concepts to parenting a child with hemophilia

From: Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children

Topic 1: Acknowledging and being sensitive to his/her perspective, feelings and ideas
Example: The child comes back from school crying because his teacher said he/she could not play soccer during recess time.
Autonomy supportive Non autonomy supportive
1. Name the child’s feeling. Acknowledge that it can be difficult. “You must have felt really angry when the teacher said you could not play soccer.” Being judgmental about the child’s feelings and ideas.
Rationalizing or minimizing emotions.
“Stop acting like a baby, you know why, you know the teacher did that for your own good, you should be grateful.”
2. Show that you are listening and let the child find his/her own solution “I see… Hmm Hmm…” Interrupting
“We have told you many times that you can’t play, you should not even start to play.”
3. Encourage the child to propose ideas and write them down, even the ones that are not suitable with his/her health condition. “Let’s make a list of all the sports that you would like to play.” Making judgments about what he or she values as good or important “Health should be your priority.”
4. Take into consideration his/her opinion about the suitability of the behaviour. “Let’s see which ones are possible, or not, for you to play and why.” Imposing your opinion. “I enrolled you in swimming classes.”
5. Ask questions to find out what the child likes in this specific unsuitable sport?
Help him/her to be specific when they do not like something.
“What do you like in this sport? Is it being with your friends?”
“Why don’t you like swimming?”
Trying to convince. We are lucky that we have a pool right next to our house, many kids would be happy to have that.”
6. Help the child to find alternatives that meet these interests. “Let’s see what could make these activities safe for you. Do you have any ideas?”
Which other sport would make you go fast like when people play hockey?”
Impose solutions “Next time, you should explain to your friend that you can’t play.”
Topic 2: Providing choices, minimizing control and involving the child as much as possible
Example: The child does not want to receive his injection in the morning.
Autonomy supportive Non autonomy supportive
1. As much as possible, give the child choices related to the management of hemophilia. “Would you prefer to watch TV during your injection or read a book ?” Imposing decisions, applying pressure or arguing “The doctor said you have to receive your injection in the morning, if you do not I am going to tell him and he won’t be happy.”
2. Engage the child as much as possible in his treatment “Do you want to disinfect your skin while I prepare your injection?” Being inconsistent or too permissive It’s ok I give up, we will do your injection tomorrow.”
Topic 3: Providing structure and explaining the rationale when choices are not possible
Example: The child hurt himself/herself playing outside and did not tell anyone, which caused a bleeding episode.
Autonomy supportive Non autonomy supportive
1. Explain in a language adapted to the child’s level of comprehension as to why the preventive behaviours are important. You have to call mommy so we can inject the little soldiers in your blood that will fix the boo boo.” Giving too much information at once, accentuating long-term consequences or scaring the child. If you don’t receive your injection, you might not be able to walk when you are my age.”
2. Set important limits for the child and stay consistent. “You always have to call me when you feel in pain and I will come and take care of your infusion.” Setting excessive rules. “You have to call me before engaging in any physical activity.”
3. Encourage questions.
Encourage the child’s ideas and for them to look for answers.
“Do you know why your knee is getting bigger? Why don’t we look up on the internet to find out or we can call the nurse tomorrow?” Avoiding discussion We have talked about it many times, you know what you have to do.”
Topic 4: Showing compassion for the child and providing non-judgmental feedback
Autonomy supportive Non autonomy supportive
1. Provide feedback that is not judgmental. “It’s a good thing that you called me, even though you felt ashamed that you played a sport you were not supposed to.” Categorizing the child. “You are irresponsible, I always have to check up on you.”
  1. This table was adapted from the work of Koestner, Ryan and Bernieri [29], and Faber and Mazlish [43]