‘Just Bead It’: hearing the voice of children with medical conditions to listen to their stories and consider how to support their educational experience

Research indicates a rise in children with medical conditions (CMC) (Canter & Roberts, 2012; Jackson, 2013). Chronic illness and healthcare needs can impede access to daily life and disrupt school attendance, impacting academic, emotional and psychosocial development (Yeo & Sawyer, 2005; Edwards, 2010; Kazak & Noll, 2015). As discourse around CMC is often dominated by illness, I considered it important to hear the child’s voice to appreciate their subjective experience and preferred identity. This study employed a narrative approach from a social constructionist perspective to hear CMCs’ multi-stranded stories. Participants included two children with identified medical needs (chronic fatigue syndrome and muscular dystrophy) who had experienced periods of school absence. Interviews were conducted using the ‘Beads of Life’ approach, developed by Portnoy, Girling & Fredman (2016), to elicit the child’s ‘life story’ and ‘challenge story’. The approach uses beads as prompts to enable children to tell their stories in ways that make them stronger, repositioning the child as the expert in their own life.
Stories were analysed using narrative holistic content, holistic form and categorical content perspectives to explore their experiences and the meaning ascribed to these. Findings from the research indicate that whilst risk and challenge is experienced, support from school, family and peers can relieve the injurious outcomes associated with medical conditions. A need for agency, social connectedness and a sense of ‘normalcy’ is also indicated. Implications for educational and psychological practice are discussed, valuing the ‘Beads of Life’ approach to elicit child voice, inform systemic practice and enhance the school experience for CMC.