Background Clinical experience and scientific studies suggest that HD has a major impact on family life. Professionals working with HD patients witness family issues and may apply different interventions to help parents and children.
Aims To explore experiences with parents and children in HD families, of Dutch professionals working in clinical settings (clinical genetics, nursing homes, mental health).
Methods A custom made questionnaire was used to explore experiences with professional care for parents and children in HD families. During a meeting, experiences were exchanged, and barriers to adequate care were discussed.
Results Participants (n=19) were psychologists and social workers with ample experience with HD patients and their families. Parents seek their help in issues on informing children about HD, children's coping with parental disease, childrearing with progressing HD, child development, behavioural problems in children or adolescents, reproductive decisions. The impact of HD on family life was described as “major”, or “devastating”, especially when there are psychiatric symptoms. Dramatic changes in family dynamics were often observed as a result of HD, with negative consequences for children. Barriers to adequate care were HD professionals' lack of knowledge on childrearing matters, and general healthcare providers' lack of knowledge on HD. Finding coordinated care for HD families over time was perceived as difficult.
Conclusions There is a need to inform general healthcare providers on the impact of HD on family life and offspring, and to educate HD professionals on child psychology. Psychosocial care for families should be integrated in long-term, multidisciplinary programs.
- Huntington's disease
- family life
- clinical experience
- psychosocial care