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EMMA WELLS
Emma Wells is Paediatric Social Worker in The Children’s Cancer and Haematology Service, John Hunter Children’s Hospital, Newcastle NSW
For young people who have a chronic illness such as a bleeding disorder, navigating the school years can involve significant challenges. While the impact of the bleeding disorder will vary depending on the young person and the severity of the condition, the aim is to encourage each young person to engage with school activities, like any other child. Along the way, there are a range of supports and approaches which can be accessed if the need arises.
Besides the support provided by your Haemophilia Treatment Centre (HTC), here are a few reminders for navigating school challenges.
Every young person reacts differently to stressful situations but building communication pathways ensures you are aware of how they are coping, especially when adjusting to new or unpredictable experiences. The school environment can be challenging and can create feelings of uncertainty and isolation whether the young person is in kindergarten or high school. For example, there may be a fill-in teacher or a new student or the student may be returning to school after an extended absence.
The young person’s ability to self-regulate their reactions and behaviours will help them to manage change and this can be developed through respectful, kind and positive relationships. (1)
Children benefit from identifying and learning about their emotions and skilling young people with coping strategies such as mindfulness techniques or breathing exercises can be useful to fostering confidence and wellbeing.
Whilst some worrying can be normalised, if a young person has ongoing anxiety or fear that is impacting on their daily routines, it is recommended you request extra support.
Parents/carers and families can help develop the young person’s self-esteem through acknowledging and valuing their uniqueness and building on their strengths. This can be facilitated through spending quality time with the young person, building trust, communication and positive attention. (2)
Parents/carers and family members can show interest in the young person’s school learning journey by being enthusiastic and curious. An example of this might be through finding a shared interest and visiting a library together to research and read about the topic.
School friends and peers are important for young people as they ensure feelings of connection and acceptance. If possible, encourage and support the development of friendships by planning a play date or a meeting in a local park. Additionally, friendships with young people away from the school are valuable, such as through a sporting or activity group in the local community.
Encourage your young person to identify a key person who they can talk to if they have issues at school and follow-up on concerns promptly if needed. Some schools offer to assist with a ‘buddy system’, where the young person is matched with a classmate, and this can be especially positive to assist in times of adjustment, such as when commencing kindergarten or moving schools.
If the family is experiencing adverse life events it may be beneficial to provide an update to your young person’s teacher so that extra support can be sought, if needed.
As a parent/carer you are the expert on your child and your input is indispensable, so reach out to your child’s teacher if you have concerns. Additionally, some schools have well-being teachers and access to specialist staff who can provide support for the young person, if required.
The aim is for the school to treat your young person like any other and to avoid the bleeding disorder from defining them and accordingly, some young people request that their diagnosis is kept confidential.
If incidents of bullying or discrimination occur, reach out to the school for support and advice.
Check the school is informed and prepared with up-to-date information about your young person’s diagnosis, including their individual health support plan. Ensure you feel as confident as possible with your child’s teacher and school staff and contact your HTC if you need any assistance with this process.
Advising the school about absences to attend medical appointments is important and your HTC can provide attendance certificates if needed. If the young person is absent for extended periods, work with the student’s teachers to find a flexible learning plan to suit the young person, for example online learning, an alternative assessment, or extended deadlines.
If your young person has missed significant amounts of school time due to their diagnosis, tutoring assistance is available through the Ronald McDonald Learning Program. Your HTC Team can help with a referral to this excellent free service.
Parents and carers are influential role models and young people learn to react and regulate their emotions by observing how family members cope. This can be demonstrated by appropriate resilience and coping strategies, such as by being flexible and optimistic even during times of unpredictability.
It is well recognised that maintaining routines is beneficial in ensuring young people feel safe, as there is predictability and structure. Routines can assist with home-to-school routines and has been associated with improved cognition, family functioning, social skills and improved sleep patterns. (3)
Additionally, family rituals are powerful in connecting families and ensuring children feel safe4, for example, sharing a question at dinner time about everyone’s highlight of the day, or a family movie night on a weekend.
If there are concerns about the young person, their siblings or if the family/carer is experiencing significant issues, reach out to your school, general practitioner, HTC or other services for support.
It is important to acknowledge that life for young people with a bleeding disorder may involve extra challenges; however, supports are available. Through a combination of approaches and services, schools can provide a nurturing, stimulating and safe environment which supports young people academically, emotionally and socially to ensure happy, healthy and active lives.
USEFUL CONTACTS
Kids Helpline – 1800 551 800
eSafety Commissioner – esafety.gov.au
Raising Children Network – raisingchildren.net.au
Raising Children Network. School age: family life. Accessed 13 November 2024.
Berk LE. Child Development. 7th edn; Pearson International Edition. Boston, USA: Pearson Education Inc, 2006.
Better Health Channel. Victorian Government. Chronic illness – coping at school. Accessed 6 November 2024.
Frogner L, Hellfeldt K, Ångström AK, et al. (2021). Stability and change in early social skills development in relation to early school performance: a longitudinal study of a Swedish cohort. Early Education and Development. 2021;33(1):17–37.
NSW Department of Education. Understanding bullying. 16 July 2024. Accessed 6 November 2024.
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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