Experiences with general practitioners described by families of children with intellectual disabilities and challenging behaviour: a qualitative study

OBJECTIVE: To investigate parents' experiences of follow-up by general practitioners (GPs) of children with intellectual disabilities (ID) and comorbid behavioural and/or psychological problems. DESIGN: Qualitative study based on in-depth interviews with parents of children with ID and a broad range of accompanying health problems. SETTING: County centred study in Norway involving primary and specialist care. PARTICIPANTS: Nine parents of seven children with ID, all received services from an assigned GP and a specialist hospital department. Potential participants were identified by the specialist hospital department and purposefully selected by the authors to represent both genders and a range of diagnoses, locations and assigned GPs. RESULTS: Three clusters of experiences emerged from the analysis: expectations, relationships and actual use. The participants had low expectations of the GPs' competence and involvement with their child, and primarily used the GP for the treatment of simple somatic problems. Only one child regularly visited their GP for general and mental health check-ups. The participants' experience of their GPs was that they did not have time and were not interested in the behavioural and mental problems of these children. CONCLUSIONS: Families with children with ID experience a complex healthcare system in situations where they are vulnerable to lack of information, involvement and competence. GPs are part of a stable service system and are in a position to provide security, help and support to these families. Parents' experiences could be improved by regular health checks for their children and GPs being patient, taking time and showing interest in challenging behaviour.