Improving communication for adolescent students living with health challenges

By Dr. Julie White, Psych4Schools Guest Blogger

An estimated 12% or half a million Australian school-aged children and young people live with chronic health conditions. There are about 200 different conditions, ranging from Cystic Fibrosis to survivors of childhood stroke to those dealing with Crohn’s Disease.

Medical successes enable many, who in the past would have died in childhood, to now live well into adulthood. This means that educational success—and all that it brings in terms of economic security and social connection—is as important for these students, as it is for everyone else.

Today it is rare to spend long periods in hospital, with the average stay just 3 nights. More commonly these students spend long or frequent periods of time at home—not well enough to attend school, but not sick enough to be in hospital. 

Secondary students who live with serious and chronic health conditions often face quite different challenges from primary school children. Being seen as an ‘ordinary’ student can be novel for these young people who just want to ‘fit in’ and be accepted. There are not always obvious signs of ill health, and sometimes teachers will not be aware of students’ health challenges. A large Australian study found that many preferred to retain a low profile at school and therefore often slipped under the radar.

However, there is a problem with allowing these students to keep under the radar. Legally, they are fully protected by disability legislation and entitled to ‘reasonable adjustment’ in their learning programs. Universities have clear processes for assisting these students, but most school systems have not yet developed adequate policy or guidance for schools.  Consequently, many school level professionals are not fully aware of these entitlements and responsibilities.

After their child’s health, parents of these young people have identified communication with their child’s teachers as their biggest concern.

Secondary schools are complex, busy places and there are not usually many students living with serious and chronic health conditions in each school, so it can be difficult to develop procedures and to make sure they are looked after. Below are some key points for parents, teachers, school-level managers and support staff to consider, when supporting a secondary student living with a serious or chronic health condition.

For Parents

Prepare what you want to communicate with teachers before meetings. Write points on one page. Be succinct. Request regular meetings and telephone calls or emails. Request one contact person at the school. Be persistent.

For Welfare Teachers, Health & Wellbeing Managers, Psychologists, Nurses

Listen carefully to the parent as they have great expertise about their child, their health challenges and their capacity to learn and complete tasks. Establish clear lines of communication and routine monitoring procedures.

Clearly share information with all subject teachers each term. If you are concerned about privacy, ask the parent and the student first. Notify each teacher about prolonged periods of absence and provide leadership about how to adjust the learning program. You do not need a lot of information about the health condition, as students of this age will usually self-manage health issues. Consult with parents if you are unsure. Establish a system of maintaining contact with the student if they are not able to attend school. Identify a key person to be a conduit for communication between home and all of the student’s teachers.

Expect that it might be challenging and may take some time, but a short email really only takes a couple of minutes and can make a huge difference.

For Subject Teachers

Notice and show interest in the student  – not just their health or absences. Do not speak about their health challenges in front of the class. Adjust the work required when necessary. Do not feel bound to treat these students exactly the same as other students—as their circumstances are different. The law is on their side and they are entitled to ‘reasonable adjustment’. You could extend assignment due dates, reduce the word length of tasks or the number of exercises to be completed. Be as flexible and helpful as you can, remembering that these students often live with pain, nausea, lethargy and depression.

Often they won’t ask for help. Please listen to their parents who may request extensions or assistance on behalf of their child.

For Students with Health Conditions

Keep going! Keep explaining why you have been away from school and keep asking for help and ‘reasonable adjustment’ to class work and assignments. Success in school is very important for your future, so work hard. Consider enrolling part time, especially in the final years of schooling. You are likely to be entitled to do this – even if it is inconvenient for the school.

It is also likely that you will be entitled to special consideration in Year 12. Seek help from the Welfare or Wellbeing teacher and the Year Level Coordinator early in the year to flag that this will be required.

Dr Julie White joined The Victoria Institute in Melbourne as a senior researcher in 2013. She previously held posts at The University of Melbourne and La Trobe University.  Her interests include identity, social justice, inclusion and the connection between education, health and law. She has undertaken several studies about the education of children and young people with chronic health conditions and has published extensively on this topic. Prior to her academic work in universities, she worked as a teacher in primary, secondary and technical schools, specialist schools for students with disabilities and intensive English language schools for refugees and immigrants.

Psych4Schools members can access further information and many practical strategies, from the newly published ebooklet, Working with children who live with serious and chronic medical conditions. Not a member? Join here.