Here are some suggestions to help teachers make school a positive environment for students with Cystic Fibrosis (CF).
As each student with CF is affected differently by the condition it is imperative that teachers speak with the student and his or her parents to determine that student’s particular needs. Building relationships with the student and parents will enable a frame-work of care to be established and provide clear lines of communication. Essential information such as the name of the treating consultant should be exchanged in case an emergency arises.
Viral infections such as the common cold are the most common cause of chest infections for people with CF. One of the most important things that they and the people they have contact with can do is to minimise exposure to harmful germs and bacteria. Coughing and sneezing are common modes of transmission. Simple hand washing and/or using antibacterial hand gel and covering one’s mouth when coughing or sneezing prevents virus transmission. It is imperative that all students and teachers maintain this level of hygiene.
Supporting the ‘CF diet’
When teaching your class about nutrition, be sensitive to the student with CF who has a diet that may appear unhealthy by most nutritional standards. Students with CF are encouraged to consume large meals that are high in calories, fats, protein and salt. Some struggle to maintain this daily intake of between 120-150% of the recommended daily allowance and will benefit from support. A young child torn between eating and playing may want to eat a little and run to the playground. He or she needs time and encouragement to eat every meal. Some students need additional snacks to help maintain proper nutrition. Older students face expectations about fad diets from other students.
Students with CF are taught to self-administer enzyme capsules when eating and should be allowed to do so. A discussion with the child’s care-giver will determine whether the student is sufficiently old and capable of self-administering. As enzyme capsules are supplements they do not pose a risk to other students if accidentally consumed.
Supporting the need for exercise and combating dehydration
Exercise should be encouraged as much as possible for students with CF. It is fundamental to their treatment, helping to strengthen the lungs, muscles and bones and assists in clearing mucus from the lungs. Exercise is also of emotional benefit. It can help lower stress levels, promote self esteem and assist in building friendships. How much he or she is able to participate will depend on that individual’s level of health and how they feel from day to day. The student with CF may cough more during exercise but should always be encouraged to participate in the activity. This may be embarrassing to him or her, and if so a discussion between the student, parents and teacher can help by agreeing a strategy to manage the embarrassment.
Most people with CF have a reduced tolerance to heat, especially when exercising. Their loss of salt and risk of dehydration and electrolyte imbalance should be managed by the student carrying water or a sports drink, eating salty snacks or taking salt tablets during hot weather.
Dehydration can lead to tiredness, difficulty concentrating, feeling grumpy or irritable, loss of appetite, nausea or vomiting, headaches, cramps, thirst and sunken eyes. It can also make mucus harder to cough up as it becomes even stickier. Bowl blockages can also occur.
Appreciating the effects of CF on the student
Having CF may affect a student in many personal ways that should be appreciated by teachers and are described fully under ‘Effects of the Condition on the Individual’. In summary, these include:
- the need for time away from study for hospitalisations and medical appointments – parents may request that teachers provide work for the student to undertake in hospital.
- fatigue and reduced endurance – a student with CF may tire more easily than their peers for a number of reasons including: waking early for morning treatments, having a chest infection; having low lung function and malnutrition.
- health regimen – students are encouraged to be active participants in their regimen including the self-administration of medications. Aside from consuming enzyme capsules, students may inhale medications like Ventolin or monitor blood sugar levels and inject insulin for CF related diabetes. They may also need to conduct airway clearance techniques at school including the use of inhaled medications,
- personal image – delayed puberty and reduced height and weight affect body image. Teachers can assist by emphasising with the student who has CF and expressing to other students that appearance is only one thing that “makes you who you are”. It is the student’s choice whether or not to tell others about their condition and should be supported and respected in their decision.
- infertility – this is common in boys with CF. It is particularly important during sex education that males with CF still be encouraged to use protection with an emphasis on STD’s.
Avoiding an over-protective attitude
Children with CF wish to be treated the same as any other child. There are just some things they can’t do and some things they must do which are different to their school friends.
Intervening to ensure a positive school environment
Students with a condition may be a target of bullying and teasing. There can be many reasons why they may be a target such as being small in stature, low in weight, taking enzyme capsules, eating extra food including high calorie or “junk” food, persistent coughing and spitting out mucus or having time away from school. They may have a feeding tube, portacath or PICC line. Unfortunately some students may make jokes about CF being a life-shortening condition and this can be traumatic for the individual. Some students with CF may already have self esteem issues about their condition and bullying on top of that can disrupt their education, reduce enjoyment of school and compound further esteem issues.
For additional comprehensive information it is highly recommended that school staff contact Cystic Fibrosis Victoria for a copy of their Schools Information Pack. To view leaflets on teachers working with students of all ages with cystic fibrosis and to find other resources go to:
Links to other useful online resources for schools on strategies in responding to a child/young person with this condition
Association for Children with a Disability: www.acd.org.au
Victorian Disability Services: https://www.vic.gov.au/health-community/disability-services/health-support-services.html