Barriers to full participation among children with a chronic disease
| Having a sense of belonging | The ability to affect social interactions | Being 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. |