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Z Orthop Unfall 2019; 157(01): 54-58
DOI: 10.1055/a-0639-5795
Original Article/Originalarbeit
Georg Thieme Verlag KG Stuttgart · New York

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

Article in several languages: English | deutsch
Christian-Dominik Peterlein
1   Zentrum für Orthopädie und Unfallchirurgie, Universitätsklinikum Gießen und Marburg, Marburg
,
Sinja Friedrich
1   Zentrum für Orthopädie und Unfallchirurgie, Universitätsklinikum Gießen und Marburg, Marburg
,
Hanna Daniel
2   Institut für Medizinische Biometrie und Epidemiologie, Philipps-Universität Marburg, Fachbereich Medizin, Marburg
,
Dominik Malcherczyk
1   Zentrum für Orthopädie und Unfallchirurgie, Universitätsklinikum Gießen und Marburg, Marburg
,
Janine Ruden
3   Abteilung für Unfallchirurgie, Dreifaltigkeits-Hospital, Lippstadt
,
Bilal F. El Zayat
1   Zentrum für Orthopädie und Unfallchirurgie, Universitätsklinikum Gießen und Marburg, Marburg
› Author Affiliations
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Publication History

Publication Date:
11 July 2018 (online)

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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
 

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