Impact of Chronic Disease on Mental Health and Education

Ashleigh Lin (Telethon Kids Institute), Kirsten Hancock (Telethon Kids Institute); Kevin Runions (Telethon Kids Institute); Donald Payne (Telethon Kids Institute; Princess Margaret Hospital); Graham Hall (Telethon Kids Institute); Cindy Branch-Smith (Telethon Kids Institute), Gareth Baynam (Genetic Services of Western Australia, Department of Health), Rob Eikelboom (Ear Sciences Institute Australia), Donna Cross (Telethon Kids Institute); Mark Everard (Princess Margaret Hospital), Caron Molster (Office of Population Health Genomics, Public Health and Clinical Services Division, WA)

The primary aim of this study is to characterise the mental health, wellbeing and school and other social experiences of large numbers of Western Australian children and young people living with chronic illnesses.

Secondary aims are to investigate condition-specific vs. generalizable experiences, and to understand the impact of age- and illness-related factors on mental health, wellbeing and school experiences.

Methodology:

We will achieve these aims via a secure online survey to be completed by for children age 6-11 years (via parent-report) and by adolescents aged 12-18 with chronic diseases in WA. We will also survey parents.

For comparisons to the general population, survey content will be developed to align with the content of the Young Minds Matter Survey, a nationally representative survey of 4-17 year olds conducted in 2014 that captured prevalence of mental health, wellbeing, and educational experiences.

The link to the survey will be distributed through the Telethon Kids Institute, Princess Margaret Hospital, Genetic Services of Western Australia, Ear Science Institute Australia, School of Special Educational Needs: Sensory, and our other established education and health networks.

To recruit participants with well-defined conditions, we will approach community organisations to advertise our link (e.g. the Cystic Fibrosis Association of WA; Genetic and Rare Disease Network; Deafness Council of Western Australia).

We have chosen to focus primarily on the diseases in which our group has expertise:  type 1 diabetes, cystic fibrosis, moderate to severe asthma, ear disease and hearing impairment, and rare diseases.

The survey will be designed to facilitate

1. the necessary parental consent and child/young person assent procedures
2. parent vs. young person completion and age-appropriate questions; and
3. distinct pathways to illness-specific questions.

We have chosen to exclude children and young people with developmental disorders or primary mental health conditions without co-morbid physical illness.

Outcomes of interest:
mental health indexed by symptoms severity; social and school functioning; academic achievement; experiences of bullying; peer and teacher relationships; stigma; indices of disease severity and management.

Community participation:
We will consult with young people with chronic conditions and their families in the development of the survey to better understand appropriateness and barriers to completion. We will pilot the survey with a small group of children and young people and their parents.

Children and young people who have chronic health conditions such as diabetes, cystic fibrosis, and hearing loss, face challenges beyond the obvious physical health-related ones.  Research has shown they are also more likely to have mental health problems.

There have been a few studies indicating that what happens to these young people at school might either help protect them from mental health problems, or make them worse.

This study will use an online survey of parents of children (4-17) with type 1 diabetes, cystic fibrosis, hearing loss, or a ‘rare condition’ to help us understand the mental health of these young people and the role of school in helping them.

Funder: Brain & Behaviour Research Focus Area and Chronic Diseases of Childhood Research Focus Area, Telethon Kids Institute. 

External collaborators:

• Cystic Fibrosis Association of WA
• Genetic Services of Western Australia, Department of Health
• Ear Sciences Institute
• Australia Genetic and Rare Disease Network
• Deafness Council of Western Australia