For children, school is not only the place where they learn but also a space to share with friends. As far as possible, attending to lessons should be maintained as it would have a positive impact in their relations and so in their quality of life.
Talking to the school team, including mainly your child’s responsible teacher is essential to adapt the process through the evolution of the disease as well as introduce the new situation to the classmates. Several measures can be taken to prolong or get back to school after treatment (see section Treatment for XP).
Main changes that school should adapt to take in these children are covering windows with a sun protective screen or curtains, taking care of an inner space for playtime or physical exercise, allow drop-in and drop-out as closest to the building as possible and avoiding any exposure to the sun from 11h to 16h. Around 50% of the exposure that children receive is during schooling hours at playtime.
It is equally important to explain and share this information with other classmates, teachers and other professionals working in the centre. It is helpful if they understand the disease and specifically the needs of the child. It is probably that the child with XP will need to go to the doctor often and his/her absences should be explained to their friends, they can be a great source of support if integrated into the care journey.
For further information and resources, please consult the XP Spanish association on school.
External support groups can be helpful when dealing with a recent diagnoses and sharing experiences with families and friends who have also been affected by a similar disease.
Friends and relatives are essential to cope with the new situation and sharing with people that are going through the same situation can be make things easier to talk. Often, you can share with them disease related issues that anyone else could understand.
You can always ask your healthcare team about patients associations related to your disease, they are usually involved in healthcare centres to help when the moment is needed. If you also liked to have an online resource accessible at any time, you can find related people to talk to in the Share4Rare community. Join and share your worries and knowledge to get new views about your thoughts.
Siblings suffer often collateral problems from having their brother/sister being affected by a rare disease. They receive less attention under this situation and it can lead to behaviour and emotional problems. Ensuring emotional and social support for the whole family (patient, parents, siblings and other relatives) is essential to ensure the correct quality of life and managing the disease-related stress. This will positively impact in managing stress-related events in their lives afterwards18.
Lack of communication about end-of-life of their brother/sister is a related problem for siblings when going through this painful situation for the family19. It is important to communicate siblings about their brother’s/sister’s disease as well as to talk to them and prepare them for the end-of-life process if needed. It may decrease anxiety and regrets later on. All this reinforce the idea that a supportive familiar environment is the best way to protect the psychological well-being of siblings20.
In our Paediatric Palliative Care material, you will find this specific chapter on siblings support.