'Providing more scaffolding: Parenting a child with developmental co-ordination disorder, a hidden disability

Claire Novak, R Lingam, Jane Coad, Alan Emond

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8–6%. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals.

Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385–405).

Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a ‘hidden disability’. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the ‘expert’ on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members.

Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families.
Original languageEnglish
Pages (from-to)829-835
Number of pages7
JournalChild: Care, Health and Development
Volume38
Issue number6
DOIs
Publication statusPublished - Aug 2011

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Parenting
Parents
Guilt
Information Services
Qualitative Research
Health Education
Interviews

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'Providing more scaffolding : Parenting a child with developmental co-ordination disorder, a hidden disability. / Novak, Claire; Lingam, R; Coad, Jane; Emond, Alan.

In: Child: Care, Health and Development, Vol. 38, No. 6, 08.2011, p. 829-835.

Research output: Contribution to journalArticle

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abstract = "Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8–6{\%}. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals.Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385–405).Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a ‘hidden disability’. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the ‘expert’ on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members.Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families.",
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