PDF herunterladen
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

Artikel in mehreren Sprachen: 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
› Institutsangaben
Weitere Informationen

Publikationsverlauf

Publikationsdatum:
11. Juli 2018 (online)

Auch verfügbar auf
    Lizenzen und Reprints

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
 

  • References/Literatur

  • 1 Peterlein CD, Schofer MD, Guntermann LC. et al. Elterliche Recherche vor Aufsuchen der kinderorthopädischen Sprechstunde – Schwerpunkt Internetinformationen. Z Orthop Unfall 2009; 147: 721-726
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 2 Morcuende JA, Egbert M, Ponseti IV. The effect of the internet in the treatment of congenital idiopathic clubfoot. Iowa Orthop J 2003; 23: 83-86
    PubMedGoogle Scholar
  • 3 Aslam N, Bowyer D, Wainwright A. et al. Evaluation of Internet use by paediatric orthopaedic outpatients and the quality of information available. J Pediatr Orthop B 2005; 14: 129-133
    CrossrefPubMedGoogle Scholar
  • 4 Beall MS3rd Golladay GJ, Greenfield ML. et al. Use of the Internet by pediatric orthopaedic outpatients. J Pediatr Orthop 2002; 22: 261-264
    PubMedGoogle Scholar
  • 5 Pennekamp PH, Diedrich O, Schmitt O. et al. Prävalenz und Stellenwert der Internetnutzung orthopädischer Patienten. Z Orthop Ihre Grenzgeb 2006; 144: 459-463
    Artikel in Thieme ConnectPubMedGoogle Scholar
  • 6 Fung BK, Ho SM, Fung AS. et al. The development of a strength-focused mutual support group for caretakers of children with cerebral palsy. East Asian Arch Psychiatry 2011; 21: 64-72
    PubMedGoogle Scholar
  • 7 Hall JG, Agranovich O, Ponten E. et al. Summary of the 2nd International Symposium on Arthrogryposis, St. Petersburg, Russia, September 17–19, 2014. Am J Med Genet A 2015; 167: 1193-1195
    CrossrefPubMedGoogle Scholar
  • 8 Whelan JS, Bielack SS, Marina N. et al. EURAMOS-1, an international randomised study for osteosarcoma: results from pre-randomisation treatment. Ann Oncol 2015; 26: 407-414
    CrossrefPubMedGoogle Scholar
  • 9 Hefti F. Kinderorthopädie in der Praxis. 3. Auflage. Heidelberg: Springer; 2015
    Google Scholar
  • 10 Kirchhoff S, Kuhnt S, Lipp P. et al. Der Fragebogen, Datenbasis, Konstruktion und Auswertung. Stuttgart: UTB; 2006
    Google Scholar
  • 11 Diekmann A. Empirische Sozialforschung. Hamburg: rororo; 1999
    Google Scholar
  • 12 Robert Koch-Institut. Gesundheit in Deutschland – Gesundheitsberichterstattung des Bundes gemeinsam getragen von RKI und Destatis. 2015: 369-372
    Google Scholar
  • 13 Thiel W. Starthilfe zum Aufbau von Selbsthilfegruppen – Ein Leitfaden. Berlin: NAKOS; 2014
    Google Scholar
  • 14 Sherman SL, Allen EG, Bean LH. et al. Epidemiology of Down syndrome. Ment Retard Dev Disabil Res Rev 2007; 13: 221-227
    CrossrefPubMedGoogle Scholar
  • 15 Shin M, Besser LM, Kucik JE. et al. Prevalence of Down syndrome among children and adolescents in 10 regions of the United States. Pediatrics 2009; 124: 1565-1571
    CrossrefPubMedGoogle Scholar
  • 16 Graf R. The diagnosis of congenital hip-joint dislocation by the ultrasonic Combound treatment. Arch Orthop Trauma Surg 1980; 97: 117-133
    CrossrefPubMedGoogle Scholar
  • 17 Ponseti IV. Treatment of congenital club foot. J Bone Joint Surg Am 1992; 74: 448-454
    CrossrefPubMedGoogle Scholar
  • 18 Ippolito E, Ponseti IV. Congenital club foot in the human fetus. A histological study. J Bone Joint Surg Am 1980; 62: 8-22
    CrossrefPubMedGoogle Scholar
  • 19 Vereinigung für Kinderorthopädie (VKO). Im Internet: http://www.kinderorthopaedie.org Stand: 27.06.2018
    PubMed