Evaluation of Organisational Structures of Self-help Groups in the Field of Paediatric Orthopaedics.

Abstract

There have been few publications on the organisational structures of self-help groups that handle orthopaedic disorders in children. A standardised questionnaire was sent by post to the corresponding support groups. The aim was to evaluate the self-help group's structure, use of social media and financial background. Support groups for dwarfism, infantile cerebral palsy and Down syndrome responded and sent the questionnaire back to our department. Most self-help groups were incorporated societies and belonged to an umbrella organisation. The founding year was predominantly in the decade 1990 - 2000 (n = 15). The founders were predominantly parents (n = 28; 77.8%), concerned individuals (n = 11; 30.6%) and - in two cases - physicians (5.6%). 29 support groups (80.6%) received donations for financial support. The aims, activities, and manner of contact were presented in the home page (n = 35; 97.2%). Most self-help group focussing on paediatric orthopaedic disorders cooperate with physicians in different specialisations to obtain information and recommendations. The study presents the first information on self-help groups and documents the multidisciplinarity of paediatric orthopaedics. Close collaboration between paediatric orthopaedic surgeons and regional support groups might contribute to the reduction of uncertainty and fears and improve of medical provision.