Abstract
Purpose
Developmental coordination disorder (DCD) is a neurodevelopmental disorder with an estimated prevalence of 2–6% in school-aged children. Children with DCD score lower in multiple quality of life (QOL) domains. However, the effect of a child’s DCD on their parents’ and family’s QOL has not previously been assessed in a UK population. We aimed to assess parental and family QOL within UK families containing at least one child aged 6–18 years who was diagnosed with DCD.
Methods
A mixed-methods study was designed, using an online questionnaire that incorporated the Family QOL Scale and the 12-Item Short Form Health Survey.
Results
The emotional and disability support domains of family QOL were markedly negatively affected by DCD, with lack of support by medical and educational professionals cited as a major source of stress. Parental mental health was also negatively affected. In many cases, the child’s DCD impacted on parental work life, family social life and siblings’ well-being.
Conclusions
Having a child with DCD has a considerable impact on families. This needs to be recognised by healthcare and other professionals; otherwise, services and support may not be appropriately targeted and the negative sequelae of DCD may ripple beyond the individual with costly social and economic consequences.
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Acknowledgements
PKL and AK conceived the study; MAMC, PKL and AK wrote the questionnaire; MAMC analysed the results; MAMC and AK wrote the manuscript; PKL helped to draft the manuscript. All authors and approved the final manuscript. Thanks to Dr Catherine Purcell for helping to proof the manuscript. The study was supported by a grant from the Waterloo Foundation (Grant No. 1944/3218).
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MAMC and PKL declare they have no potential conflicts of interest to disclose. AK is the parent of an adult with NDDs, the chair of Movement Matters UK, patron of the Dyspraxia Association of New Zealand, Advisor to the Dyspraxia Association in the Republic of Ireland, Medical Advisor to the Dyspraxia Foundation in the UK and is on the Hidden Impairment National Group for the Department for Work and Pensions, UK.
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This study was approved by the University of South Wales Faculty of Life Sciences and Education Low Risk Ethics Committee and has been performed in accordance with the ethical standards of the institution and the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Cleaton, M.A.M., Lorgelly, P.K. & Kirby, A. Developmental coordination disorder: the impact on the family. Qual Life Res 28, 925–934 (2019). https://doi.org/10.1007/s11136-018-2075-1
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DOI: https://doi.org/10.1007/s11136-018-2075-1