D. Dis/empowerment of children in encounters with healthcare professionals

As previously mentioned, children have the right to participate in all matters that affect them. However, the domain of healthcare is particularly sensitive and one in which the tension between child protection and support for their increasing levels of autonomy comes to the surface most bluntly.

Due to parents’ uneasiness related to children’s impairments and their desire to try to give their children the best future possible, parents’ decisions to pursue medical ‘cures’ often go unquestioned. However, this does not mean that children should not be given the chance to engage in a dialogue with adults, pose questions and get access to all the information they might need to develop an understanding of what will happen to them. As we can see from the following examples, children are often sidelined in medical encounters and not given enough opportunity to express their views and concerns.

An 18-year-old young disabled woman from Serbia said:

…I think that they [healthcare professionals] should ask a child directly, and not that I have to tell to my mum, and then my mom to ask them, because it has been happening quite often that I had some questions and then I had to tell to my mom: ’Mom, please ask this’, because my views did not matter match.

In the following example the 17-year-old young man from Serbia explained how he felt after being examined by a doctor who did not pay sufficient attention to his concerns:

In most of the cases, he [the doctor] ignored me, like he basically had conversations with my mother and father only, and he completely ignored me, so… I was just there like some sort of object for trying out…I don’t know…his new ideas.

A disabled teenage girl from England spoke about her experience when she woke up after surgery and the healthcare staff did not take seriously how she felt:

And I was really ill from the morphine. Because I didn't react very well to it. I was really ill. And I think it was the day after I had my surgery. And there was quite a lot of complications with that as well. So I was feeling really ill my face had swollen up, I just, I was being sick. I really wasn't very well. And the physiotherapist came around to try and get me out of bed. But I was having hallucinations. I was just…yeah, I was not very well. And they just kept trying to force me to get out of bed. They were pulling my leg around. And I just…like I could barely speak because I felt so ill. And I just said ‘No, just leave me alone’. And they were just so pushy with it. And in the end, my mom told them to just get out and leave me alone. But they really weren't giving up on trying to get me out of bed. But I just wanted to chill. And that's when I felt like I wasn't heard.

In the stories participants in my research shared, the role of parents in medical encounters proved to be significant for how children were treated by healthcare professionals. If parents considered their child’s participation important, they encouraged them to ask questions or insisted that healthcare professionals explain to the child what is at stake. Thus, the positioning of children in the three-way relationship of parent-child-healthcare professional strongly depended on the adults’ perceptions of the child’s competence and maturity and the importance the adults attached to the child’s participation. Parents may act as a barrier to children’s participation or a source of support (Keravica, 2023).

A 16-year-old disabled girl from England shared a positive experience of being involved in the decision-making process for a proposed treatment. Her parents deemed it important to help her retain a sense of choice and control over what was going to happen to her:

Well, my parents kind of sat me down a few days later, and explained to me what would happen and answered… if I'd like the consequences if I didn't have it, like the pain will get worse. And I would not be able to walk. And they told me exactly what would happen. And the risks, and they just told me everything about it really. And they said it's up to me. It's my decision. So they kind of left it up to me to decide but made sure they were there for me.

This example shows that children and young people do not want to be positioned as passive spectators and objects of adults’ concerns during medical treatments. They want to be engaged and have their say in what is happening to them. Children’s capacities evolve through experience, need to be understood relationally and constructed through intergenerational relations with adults (Lansdown, 2005).