School. Some of us fondly remember our days in school as ‘some of the best days of our lives’.
School is an important step in all children’s lives and is where most of us spend a significant amount of time throughout our childhood and adolescence. It is a place where we are taught academic skills which can help us achieve and pursue the careers we choose for ourselves later in life. It is also a place where we are encouraged to step outside of our social comfort zone and to socialise with other children and adults outside of our immediate family.
Whilst some people would agree their memories of school are positive, others will remember school as a daily challenge to conquer. The demands put on children when they go to school, whether that be academically or socially are significant. The pressures on students to achieve the highest grades seem to be evermore increasing and throughout life in school, children must continually negotiate their social environment to ‘fit in’ with their peers to make and sustain friendships.
Academic attainment and peer acceptance are both challenges that all children face during their time at school, however school can be a particularly demanding place for children with genomic disorders.
Genomic disorders, such as 22q11.2 deletion syndrome, are caused by changes in a person’s chromosome (their DNA). Genomic disorders are commonly associated with complex physical, developmental and psychiatric problems. Therefore, many children with these conditions present differently to their peers in physical appearance, social skills and their educational and mental health needs.
As such, children with these conditions may be perceived as different from the rest of their peers and may often become ‘easy targets’ of bullying. Additionally, some parents report that their child’s schools do not have the resources or expertise in their child’s condition to accommodate their child’s needs. An unsuitable school environment and bullying are both factors which can contribute to a child’s adverse experience of school.
Adverse experiences in childhood, including bullying, are significantly associated with poor mental health outcomes. Research has also shown that certain genomic disorders increases the risk of developing mental health problems, such as anxiety, Autism Spectrum Disorder, attention-deficit/hyperactivity disorder and psychosis.
However, because not all children diagnosed with these genomic conditions develop mental health conditions, it is believed that both environmental and genetic factors contribute to the increased risk of poor mental health in these children. Therefore, much about the environmental risk factors, including school experiences, that children with genomic conditions encounter remain to be explored in order to understand how mental health conditions develop in this group.
I have just started my PhD project at Cardiff University, in which I will be exploring school experiences of children diagnosed with certain rare genomic disorders to answer the question ‘do adverse school and bullying experiences of children with genomic disorders contribute to their increased risk of developing mental health problems?’
To answer this question, I will be exploring school and bullying experiences that children with genomic disorders encounter and then I will investigate if and how these experiences differ from the experiences of their peers. I will then look at the effect of these experiences on the mental health outcomes of children with genomic disorders.
To explore these areas, I would like to speak to children diagnosed with certain genomic conditions, as well as their parents and teachers to gather an understanding about their experiences of school. For this project to successfully address the areas of interest and concern of parents, I would like these conversations to explore topics and issues that children and parents feel it important to investigate.
Therefore, if you or your child has received a diagnosis of a rare genetic condition, and you have any thoughts about this research, comments for specific topics you think it would be important to investigate, or if you would simply like to share your child’s experiences of school, I would love to hear from you with your suggestions. Additionally, if you would like to get in contact to ask questions about the project, please do.
By understanding the risk factors associated with poor mental health outcomes in children with genomic disorders, we can inform intervention strategies to reduce these risks and ultimately improve children’s outcomes and quality of life.
Thank you for reading and I hope to hear from you!
Lowri
If you would like to get in contact with Lowri to hear about your experiences, please email [email protected].
(Some of the rare genetic conditions Lowri will be exploring for her PhD include: 1q21.1 deletion/duplication, 2p16.3 deletion (NRXN1), 3q29 deletion, 9q34.3 deletion (Kleefstra), 10q23 duplication, 15q11.2 deletion/duplication, 15q13.3 deletion/duplication, 16p11.2 deletion/duplication, 17q12 duplication, 22q11.2 deletion/duplication syndromes).
