'Always the guiding hand': parents' accounts of the long-term implications of developmental co-ordination disorder for their children and families.

BACKGROUND There has been little investigation of the long-term implications of developmental co-ordination disorder (DCD) and, particularly, its impact on families. This is despite the prevalence of the disorder (4.5% to 6%) of the child population, and the high rates of referral to occupational therapy departments. The study reported here was part of an evaluation of an innovative screening clinic for the assessment of children with DCD. METHODS Within the case study approach of the evaluation, questionnaires, including open-end questions, were sent to 70 families. All had attended the screening clinic 6 years earlier and had little subsequent contact with the occupational therapy service. Semi-structured interviews were held with 12 mothers who volunteered to participate. These enabled specific issues raised in the questionnaires to be explored in greater depth. Interviews were audiotaped and full text transcripts produced for analysis. RESULTS Over half the questionnaires were returned despite the length of time elapsed since hospital contact. Parents who responded reported a high persistence of problems in their children. Difficulties spanned motor and academic performance, emotional/behavioural responses and social interaction. Twenty-eight children (80%) of respondents were reported as having difficulties in three or more areas. Bullying was a commonly identified problem. At interview mothers spoke at length about their experiences and reported feeling stressed and distressed. Mothers reported a lack of support and expressed feelings of isolation. They said that their time investment in their child with DCD had pronounced effects on themselves and other family members. Specifically they highlighted time spent fighting the system, primarily for educational support. CONCLUSIONS The study suggests a need for occupational therapists to reframe their current ideas regarding service provision, with improved support for families, increased interagency working and more service-user involvement.

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