Long-term follow-up of paediatric anorectal anomalies and the role and efficacy of parent support groups for such conditions

Background/Purpose: There are a multitude of parent support groups for most life situations and medical conditions. The aim of this study was to discover defining characteristics and to evaluate the structure and effectiveness of parent support groups in paediatric anorectal anomalies. Methods: Over 200 non-profit organisations and parent support groups were sent questionnaires to determine their effectiveness. Many of these were excluded as they were deemed not relevant to the final study. A final 20 groups were included for review, questions were based around origins, activities, education and evaluation, organisational structure and their affiliations with the health care team. Results: Most groups had similar origins, usually an educated parent who had a child born with the condition and a zest for further knowledge and understanding and a desire to share this with others in a similar situation. Only 20 % received government funding; few had paid staff and half had good relations with the local medical and paramedical fraternity. The majority had a team of long-term enthusiastic volunteers who remained with the group to support others long after their own child was no longer a concern. Conclusions: Some support groups offer a valuable service to families alongside the medical and paramedical fraternity. These groups provide families with the day-to-day lived experiences through social media, networking and meetings. Some provide more formal educational conferences designed to bring families, the medical and paramedical fraternity together to learn valuable lessons from each other.