McDonagh K, McGuire BE & Durand H (2021) Being a parent of a child with Down's arthritis: an interpretative phenomenological analysis. Disability and Rehabilitation. https://doi.org/10.1080/09638288.2021.1979663
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.
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.
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.
Down’s arthritis; Down syndrome associated arthritis; Down syndrome; chronic pain; parental impact; qualitative
Output Status: Forthcoming/Available Online
Disability and Rehabilitation
|Publication date online||22/09/2021|
|Date accepted by journal||07/09/2021|
|Publisher||Informa UK Limited|