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 Criticizing | “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.” |