Being a parent of a child with Down’s arthritis: an interpretative phenomenological analysis

Abstract

Purpose: To explore the parental impact and experiences of caring for a child with Down’s arthritis (DA), an aggressive, erosive form of arthritis affecting children with Down syndrome. Materials and methods: Ten mothers of children with DA were interviewed via telephone. Interviews were guided using a semi-structured non-directive topic guide and ranged from 17 to 242 minutes in duration. Interpretative phenomenological analysis was the method of analysis. Results: Three superordinate themes were identified: “Struggle for Help,” “Mothers Know Best,” and “Daily Impacts.” Common challenges included issues around child pain, communication, and challenges in accessing diagnoses and relevant healthcare services. Parents portrayed a reality characterised by ongoing struggles, particularly parents of nonverbal children and those living further from paediatric rheumatology services. Connecting with other parents of children with DA provided a vital source of emotional and informational support. Conclusions: Findings provide novel insight into the experience of being mother of a child with DA, highlighting regional healthcare disparities, the need for upskilling of healthcare professionals, and for increased public awareness. Further research is needed to better understand the impact of DA on fathers and siblings. Findings can contribute to development and provision of supports to children with DA and their families.Implications for Rehabilitation Healthcare professionals need to be upskilled in the treatment of, and communication with, children with Down syndrome with chronic illnesses and their families. A specialised stream of care for children with Down’s arthritis (DA) within paediatric rheumatology services may facilitate timely diagnosis and treatment and minimise risk of future complications. Formalised support services for children with DA and their families are needed to minimise emotional distress.