The School Experiences of Siblings of Children With Chronic Illness: Australian Parents’ Perceptions

Abstract

Children with chronic illness often experience difficulties at school, yet little is known about the impact of the child's illness on siblings’ school experiences. This study investigated parents’ perceptions of siblings’ school experiences and school support. We conducted semi-structured telephone interviews with 27 parents of children with a chronic illness who had a sibling or siblings (4–25 years), representing the experiences of 31 siblings. Interviews were audio-recorded, transcribed, and analysed using content analysis. Parents believed that 14 of 31 (45.2%) siblings had school difficulties related to the ill child, such as increased anxiety or stress at school, lack of attention from teachers, and changes in behaviour as a result of increased carer responsibilities. Parents identified increased absenteeism due to the ill child's hospitalisation and the impact of parent absences on sibling school functioning. Parents described general and psychological support from the school, and the importance of monitoring the sibling at school and focusing on their unique needs. Overall, our findings suggest the need for a school-based sibling support model that combines psycho-education for siblings and school personnel, individualised sibling psychological support, and shared school and parent responsibility in normalising the sibling experience and providing consistent support.

Keywords::

• siblings
• chronic illness
• school
• family
• experiences
• support

Acknowledgments and Funding Sources

The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation. This research was partly funded by Cancer Council NSW Program Grant PG16–02, with the support of the Estate of the Late Harry McPaul and the Kids Cancer Project.

We would like to acknowledge the recruitment support provided by Ronald McDonald House Charities; Cystic Fibrosis Federation Australia; the asthma experts (National Asthma Council of Australia); Lung Foundation Australia; the Gut Foundation; ausEE; Conquer Cystic Fibrosis; and all of the supporting parent groups across Australia.

Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and Cancer Council NSW. Alistair Lum is supported by an Australian Government Research Training Program Scholarship in association with the Kids Cancer Alliance, the Kids Cancer Centre and Ronald McDonald House Charities. Joanna Fardell is supported by the Kids Cancer Project and Cancer Council NSW. Glenn Marshall is supported by the National Health and Medical Research Council of Australia, Cancer Council NSW and Cancer Institute NSW. The authors declare no conflicts of interest.

Conflicts of Interest

None.

Ethical Standards

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.

Informed Consent

Informed consent was obtained from all individual participants included in the study.