Diabetes care in the early primary school setting: narratives of Australian mothers

Objective: To explore the experiences of Australian parents caring for a child using intensive insulin therapy in the early primary school setting to identify facilitators of this therapy and implications for parents. Background: Young children with type 1 diabetes require adult support when administering insulin in the early primary school setting, yet availability of school support, such as from nurses, is inconsistent across Australia. This increases the burden on parents and in some circumstances, insulin is avoided at school. Study design and methods: This study was a qualitative research design using narrative inquiry. Mothers (n=14) from six Australian states/territories with children attending Government, Catholic and Independent schools participated in semi-structured telephone interviews between December 2014 and September 2016. Narrative analysis was used to interpret the interview data. Results: Nine narrative threads told the collective story of mothers’ experiences supporting their child with intensive insulin therapy at school. Facilitators of intensive insulin therapy were collaborative partnerships between parents and school staff, diabetes education for school staff, reasonable adjustments for integrated care and the use of continuous glucose monitoring systems. Implications for mothers were the stigma of advocating, being worried about their child’s safety in other people’s care, restricted employment, wanting their child to be like everyone else, and providing 24/7 care behind the scenes. Despite these challenges, all children received intensive insulin therapy at school. Discussion and conclusion: The findings of this study indicate that the Australian education system lacks appropriate health support structures required for children with type 1 diabetes. In order to facilitate diabetes care at school non-nursing staff are trained to administer or supervise insulin and the overall responsibility is transferred onto parents. Implications for policy and nursing practice: Nurses working as diabetes educators need to be aware of the burden on parents and advocate for more supportive practices to facilitative intensive insulin therapy in the early primary school setting. Parents, in collaboration with health and education departments, should demand the allocation of appropriately qualified school nurses to legally provide high quality diabetes care that children are entitled to. If current practices, dictated by insufficient resources continue, the Australian Government will make the assumption that existing systems are adequately meeting the needs of students with type 1 diabetes. What is already known about the topic? Children with chronic health conditions have a high risk of poor educational outcomes. Most Australian schools do not employ nurses. Teaching and administration staff are frequently used for healthcare support including the management of diabetes. What this paper adds: This study is the first to provide qualitative insight into the experience of Australian mothers supporting their child with type 1 diabetes using intensive insulin therapy in the early primary school setting. The findings highlight the significant physical, emotional and financial impact on mothers who support intensive insulin therapy. This paper provides an awareness of the disconnect between mandatory school attendance, accessing education on the same basis as others according to the Disability Standards for Education, and the availability of school nurses to legally administer insulin.