Abstract
Background There have been few publications on the organisational structures of self-help groups
that handle orthopaedic disorders in children.
Material and Methods A standardised questionnaire was sent by post to the corresponding support groups.
The aim was to evaluate the self-help groupʼs structure, use of social media and financial
background.
Results 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.
Conclusions 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.
Key words
paediatric orthopaedics - study - self-help group - internet - social media
