Children with CF are as academically able as their peers, but hospitalization or chest infections can result in prolonged absence from school, so extra help may be needed to catch up with the rest of the class.
When children start school they make new friends and develop a social life. It is sometimes hard to decide how much to tell their friends about CF. Most families find a matter-of-fact approach is best. School friends need to know that CF is not contagious and their cough is not one that others can ‘catch’.
Time should be spent with the school nurse and your child’s teachers to explain about CF and the special requirements it brings. Give explanations about symptoms of CF such as the persistent cough, the CF diet, the need for enzyme capsules and medications, drinking more water, more frequent bathroom visits and physio sessions. Participation in sport should be expected unless the child is currently ill or is recovering from serious illness.
There are are also two very good short videos available, for teaching young children about CF: Getting Nosey with Oli and Nush (CF Trust,UK) and What is Cystic Fibrosis? (CF Foundation USA), and for older children and teachers this clip: CF and School (Nemours Children’s Clinic, Florida) is very informative. Clips are available on Youtube or in ourLibrary:Clips section
With CF teens, feeling different from their peers can become a large issue. They may be self-conscious about their CF: cough, need for medications and treatments; or the fact that most people with CF move through puberty a bit later than those without, making them appear smaller or younger than their mates, resulting in anxiety.
Teenagers can become non-compliant with their treatments, such as not wanting to spend time on their physio and not wanting to be seen to be eating the normal CF diet. Some deny the seriousness of CF in order to cope with their ‘difference’.
Facing all these issues can be stressful for a CF teen and they may need some sympathetic understanding and counselling. The CF team and the CF Fieldworkers are there to help teens through this ‘uncomfortable’ stage.
Teens are also at the stage when they should begin to take the lead and some responsibility for their treatment, preparing them for transition from the paediatric clinic where the responsibility for care is with the parents, to attending adult CF clinic where the responsibility transfers to them.
Transition usually occurs around the age of 16, but anywhere between 16 and 19. Your paediatric clinic will start preparing the teen for the transition in the year prior to the move, when they feel they are ready for the change. The teen will have an opportunity to get to know the members of the adult CF team, and become familiar with them.
When the teen attends the clinic as an adult, they can ask a parent or a friend to go with them for support.
The adult clinic also provides different services from paediatrics to reflect the changes that are occurring in their life. The young adult will be considering independence, looking to further education or employment, and maybe marriage and family. The team can provide information and support to assist them with developing that independence.
CFNZ has produced a Guide for Adults with CF which addresses a number of issues.