There’s a wide range of services in place in Australia to help schools effectively support students with a chronic illness, although the availability and extent of these support services will vary in different regions of the country.
The importance of engaging the school community right from the outset as an active partner in the support of a young person with inflammatory bowel disease (IBD) cannot be emphasised enough. Involvement by the school can help the student adjust to IBD and make his or her life as normal as possible. Poor adjustment, on the other hand, could lead to:
- difficulties completing work on time or taking part in exams
- decreased academic performance
- difficulties maintaining relationships with school friends
- difficulties participating in school activities (e.g., physical education or excursions)
- feelings of lack of confidence or lack of motivation
- low self-esteem or issues relating to body image
Students with IBD should always aim to minimise their time away from school. Two main ways to go about achieving this goal are:
- Students and families need to work together with their clinical team to schedule flexible visits for routine appointments, e.g., during school holidays. During school terms, early morning or late afternoon clinics can often be scheduled. If the IBD service that the student usually attends does not offer early morning or late afternoon clinics, that the student and/or family can write a letter to the hospital requesting such a service. For students in country regions of Australia, a combination of shared care with a local GP or gastroenterologist in between major hospital visits can mean less travel and improved wellbeing.
- Optimal self-management of IBD often enables the student and his or her family to predict the onset of a relapse and possibly minimise its impact. Optimal self-management involves maximising nutrition in children and adolescents with IBD by ensuring an adequate supply of calories, calcium and vitamin D and by treating iron deficiency as necessary. Prompt and early communication with the IBD clinical team is also essential if the student’s condition appears to be deteriorating or is failing to improve as expected.
With vigilance and good management, students with IBD can avoid missing school days often because of illness or hospitalisation, which can make them feel different from their peers. The goal of optimal treatment is to ensure that the student has normal everyday experiences and opportunities, including school attendance and personal development.
The family and school (generally with the year-level coordinator or homeroom teacher as the nominated person) need to work together to support a student with IBD. To achieve the best outcome, it is vital to establish and maintain good communication and cooperation. The best ways that this can be accomplished are detailed below:On this page:
Inflammatory bowel disease is a complex and highly individual condition, It is therefore important that the student’s particular needs are discussed openly and candidly with the school principal, year-level coordinator, homeroom teacher, and/or school nurse in a face-to face meeting soon after their IBD diagnosis. Depending on the extent of illness and the issues at hand, e.g., provisions for camping trips or special considerations for major exams etc., it will be useful to involve the health professionals responsible for the student’s care in such discussions from time to time.
The extent of information that needs to be shared with other members of the school staff, classmates, and the wider school community is best left up to the student and the family to decide. The key is to strike the right balance between ensuring that the student receives adequate care and support for their condition when at school, and their right to confidentiality and privacy. It is important to work out who will be responsible for passing on the information to relevant parties. For younger students, the parents or carers will initially take on this role. Older students who have developed a good connection with their lead teacher might choose to deal with this issue themselves or in conjunction with their lead teacher.
Develop a care plan
An awareness of the symptoms of IBD and the impact the condition might have on a student’s life can help schools implement a care plan that allows a young person to enjoy and get the most out of all aspects of school life.
A school-based care or management plan should be developed in consultation with the student’s family, school, and clinical team. The plan should be accessible to all relevant staff and should be reviewed whenever there is a significant change in the student’s condition or treatment. It is important to ensure that all relevant information is communicated to casual teachers and other staff who might have occasional care of the student.
The main issues to take into account when developing a management plan are:
- Access to toilets. It is helpful for the student to sit close to the classroom door and is allowed to leave and return to the room discreetly and without question. Access to staff toilets should also be considered if communal bathrooms are locked at certain times of the day.
- Medications. Prescribed drugs might need to be taken during school hours. The care plan should include precise information about the medications, including when and how they are to be taken.
- Eating and drinking between breaks. Dietary requirements should be taken into consideration, especially if the student has to eat during class times. This could involve the student needing to eat small amounts of food regularly, sometimes supplemented by liquid meals.
- Feeling unwell at school. Pain and exhaustion can affect concentration and reduce academic performance. Teachers should allow the student to decide whether or not to remain at school if feeling unwell, but also need to take into account whether someone will be at home should the student wish to leave school. A brief period of rest or a prescribed painkiller can enable the student to carry on until the end of the school day or at least until a responsible person is at home.
- Exercise. Strenuous physical exercise can cause joint pain or trigger an urgent need to go to the toilet. It is often best to treat the student as normally as possible as regards exercise, while still allowing him or her to decide just how much physical activity is possible on a given day. Having said that, it is also important to encourage the student to participate in exercise/sport as much as possible for their own physical and mental wellbeing. Many young people with IBD can become quite unfit after a flare-up of disease and might need six weeks or more to regain a reasonable level of fitness. High school sports teachers are often excellent in the role of coach, and can set out a gym program involving stationary bikes, treadmills, and rowing machines designed to build muscle fitness and increase confidence. It is not uncommon to encounter other young people recovering from injury or disease engaging in the same activities, so there is always a chance for some group fun!
- Excursions. Going on trips outside school can present difficulties for a young person with IBD if there are limited (or no) toilet facilities readily available en route or at the destination. In addition, bottled water would need to be taken along if the water source at the destination is outside the town water area. Some practical planning well in advance will ensure that the student’s needs will be met while still ensuring that he or she does not miss out on important social and educational activities.
- Tailor the curriculum. For many students with IBD, a major issue is coping with the volume of work set out in a curriculum. A care plan should include an ongoing ‘triage’ of school work that it is divided into essential, less essential and non-essential components. The lead teacher (usually the year-level coordinator) should engage with other teachers (including the sports teacher) to achieve a manageable volume of work for the student based on specific circumstances at a given time. Simply giving a student extensions in order to complete school work is usually not enough as it can often add to the pressures he or she is already facing. When a student is going through a bad patch of illness, a lesser volume of work should be set out until the condition improves. Tasks may need to be broken down into smaller manageable parts with interim (but flexible) deadlines set out to complete the work. For subjects such as languages, maths, sciences, etc. that usually need daily attention in order to keep up, CDs or various online applications could be useful.
Keep up good communication
It is imperative that the school and family maintain regular communication so that each party is fully aware of how the student is coping at school and at home—academically, socially, physically, and emotionally.
A combination of face-to-face meetings and regular e-mail is a good means of maintaining communication among student, school, and family. Once again, the year-level coordinator is generally in the best position to set this up. If it happens that communication is less than what is desired, has fallen over, or is not happening at all, the student and family need to discuss the issue with the school at the first available opportunity so that all relevant parties are brought into the loop and lines of communication are implemented or restored.
When a student misses a lot of school because of illness, the parents and lead teacher will need to work together to reduce the impact this will have on the student’s school work and social life. If the student is well enough to study at home but not quite ready to attend school, it is best to keep up with school work so as to not fall too far behind.
Establishing e-mail contact with the lead teacher and school friends is a good way to receive and/or send school assignments and generally keep in touch with the school environment. Parents should always be copied in on e-mails pertaining to school work (students are usually OK with this) to ensure that everyone is on the same page.
Despite the numerous challenges that having IBD present in a young person’s life, many are able to go on to study at university and other tertiary institutes. Tertiary-level students with IBD can approach the National Disability Coordination Officer (NDCO) Programme under the federal government’s Department of Education and Training. According to the information on the department’s website, NDCO ‘works strategically to assist people with disability access and participate in tertiary education and subsequent employment, through a national network of regionally based NDCOs. ‘The NDCOs work with stakeholders at the local level to reduce systemic barriers, facilitate smooth transitions, build links and coordinate services between the education, training and employment sectors.’
Visit the NDCO website at www.education.gov.au/ndcoprogramme for more information.