'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.

General practice and the provision of information and services for physically disabled people aged 16 to 65 years.

The study reported here was part of a larger survey investigating the nature and extent of disability in the Grampian region. Interviews with 212 people aged between 16 and 65 years who had a wide range of physical disabilities elicited perceptions of current and past service provision. Respondents expressed a strong need for information on disability services and reported difficulty in knowing whom to approach for this. General practitioners were the most commonly reported source of such information and low usage of the Department of Social Security, social work departments and voluntary organizations was identified. No significant relationship was found between degree of disability and frequency of consultation with a general practitioner. However, the more severe the disability the more likely it was that the general practitioner initiated contact rather than the patient. Although in general those interviewed were satisfied with medical information given regarding their diagnosis, they were more critical of information provided in relation to coping with the disorder, including that concerning benefits and services. The study confirmed the pivotal role of the general practitioner in the care of physically disabled people in the community aged between 16 and 65 years. The need to re-evaluate the role of the general practitioner in the provision of information and services is discussed.