Table 3

Barriers to full participation among children with a chronic disease

Having a sense of belongingThe ability to affect social interactionsBeing able to keep up with relevant others
Intrinsic barriers
Physical barriers such as fatigue, pain, physical changes or the demands of the treatment regimen.Influences the visibility of the disease and leads to ‘feeling different’.Increases the necessity for an adapted role in participation, which others may or may not accept.Decreases the possibilities to obtain the same level of knowledge or performance as others.
Mental barriers such as feeling ‘down’ or feeling unable to fit in.Makes children feel like they do not belong because they are different and feel different.Decreases the initiative to take an adapted role.Decreases the initiative to participate, which can lead to being unable to keep up with others.
Unpredictability of the manifestations of their disease.Reduces the child’s ability to commit to participating (eg, being unable to plan a trip with friends because you might have to cancel).Influences the choices children make regarding their role (eg, whether you think it is feasible to obtain a higher education).The recurrent need to avoid commitment or the sudden absence in participation can lead to feeling unable to keep up with others.
Extrinsic barriers
Not being invited or actively involved.Others placing an emphasis on the child ‘being different’ leads to the child ‘feeling different’ (eg, their friends still go to a theme park, even though they know the child cannot join them).When children are not actively involved, they do not experience an influence within social interactions.Decreases opportunities to participate, thereby decreasing the feeling of being able to ‘keep up’ with others.
Not being able to keep up with performance.Increases ‘feeling different’ (eg, the child will not participate in a computer game because they lack confidence and are afraid they will cause the team to lose).Makes children feel as though their individual influence is limited, as they may feel as though the environment cannot meet their needs.Decreases the children’s feeling that they can reach the same level as their peers.