Peer-reviewed article

P106 Where is the care in healthcare? Mother perspectives’ of caring for a child with narcolepsy

· 1 Oct 2022

Abstract

Abstract Introduction When caring for a child with a chronic illness, primary caregivers become care coordinators, system navigators, and illness experts. There is limited research on the challenges faced by family/carers of a child with narcolepsy. Methods Twenty participants who self-identified as a family/carer of a child with narcolepsy were interviewed, all of whom were mothers. Prior thematic analysis of submissions made by family/carers to the parliamentary inquiry informed interview questions. Interviews were analysed using the framework approach by a team of six multidisciplinary researchers. Results Three themes were identified. ‘Adjustment, communication and coping’ encapsulates challenges associated with diagnosis, the mental health toll it has on the whole family, and the limited support available to mothers. ‘Healthcare journey of narcolepsy families’ described challenges faced in the healthcare system, with mothers speaking of dismissal of their concerns and experiences of a lack of equity when accessing quality healthcare services for their child. ‘Independence, support, and resources’ unveiled the challenges carers faced accessing disability and academic supports at school and the workplace, underscoring mothers’ concerns for the future independence of their child. Discussion Mothers felt they had limited control over the trajectory of their child’s healthcare journey and emphasized the adverse psychological effect narcolepsy had on the entire family. There was an expectation that clinicians should be providing more information and support than currently is provided, across areas that traditionally are not within the healthcare domain. This raises important questions around who is responsible for providing this information and where is sourced from.