Paediatrics (RCH) - Theses
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ItemWhen adolescents are both students and patients with chronic health conditions: perspectives of parents, education and health personnel( 2014)Chronic health conditions in adolescents (10 - 19 years of age) are a major cause of disrupted education. Education disruption can result in long-lasting consequences for peer relationships, a sense of normal living, and career development. Adolescents with chronic health conditions benefit from the support of their parents, as well as health and education sector professionals. Previous research has examined school-based support for students with chronic health conditions. Research has largely examined the perspectives and experiences of teachers and parents of primary school children (6 – 12 years of age) with complex and chronic health conditions, as well as profound disability. However, little is known about how the health-education interface functions for adolescents with chronic health conditions. The views of health professionals regarding school-based support for adolescents with chronic health conditions are largely missing from the literature. Additionally, what research has been conducted has either combined highly disparate disorders under the label of chronic health conditions, or has concentrated on a single condition. The current study aimed to respond to fundamental gaps in the literature through investigating the perceptions and experiences of parents of adolescents diagnosed with cancer, anorexia nervosa, or cystic fibrosis at the health-education interface. The adolescents were enrolled in years 10 - 12 of secondary school in Victoria, Australia. The perceptions and experiences of health and education sector professionals were also sought with regard to school-based supports for adolescents with chronic health conditions. The overarching objective of the study was to construct an understanding of the health-education interface and how it functions for parents of adolescents in the final years of secondary education. The study achieved this through interpreting the lived experiences of parents, health and education sector professionals via in-depth interviews. Sixty-five in-depth interviews across five cohorts were completed. Thirty-eight parents of adolescents with one of three chronic health conditions were interviewed: cystic fibrosis, as a congenital condition diagnosed in early life (n=16); anorexia nervosa, as a mental health condition with physiological complications (n=11); and cancer, as a condition diagnosed in adolescence (n=11). Health personnel (n=11) and education personnel (n=16) were also interviewed. Thematic analysis of the qualitative data revealed six overarching themes that characterised the lived experience of the health-education interface for parents, health and education sector professionals. These were: (1) Keeping life normal: linking health and education through diagnosis disclosure; (2) Managing disclosure timing and disclosure behaviour at the health-education interface; (3) Protecting identity through non-disclosure, misdirection and escape; (4) Trust and collaboration: key workers and parents at the health-education interface; (5) Experts and novices: trust and confidence at the health-education interface; and (6) Cogs, conduits, links and keys: navigating the health-education interface. The findings highlighted the value of comparative data when examining perceptions of the health-education interface. Significant differences emerged in disclosure experiences and behaviour between conditions. Additionally, significant differences were apparent in the help-seeking behaviour of parents and access to support for students between those with mental health, congenital and later onset conditions. Health and education professionals also held differing views of their roles in support of adolescents with chronic health conditions. Within this thesis, the implications of these findings for both the health and education systems are discussed in detail. Predominately, these findings reveal a failure of equitable practice within the education sector in relation to the implementation of support for students with a range of chronic health conditions. How policy and practice across different chronic health conditions and schools at the health-education interface may be delivered with greater consistency of service is the current challenge. Recommendations for more equitable support processes are offered.