Strategies to optimize the information provision for parents of children with developmental dysplasia of the hip.

Autor:	Theunissen WWES; Department of Orthopaedic Surgery & Trauma, Máxima Medical Centre, Veldhoven, the Netherlands., Van der Steen MC; Department of Orthopaedic Surgery & Trauma, Máxima Medical Centre, Veldhoven, the Netherlands.; Department of Orthopaedic Surgery & Trauma, Catharina Hospital, Eindhoven, The Netherlands., Van Veen MR; Board member Dutch hip patient association Vereniging Afwijkende Heupontwikkeling, Nijkerk, the Netherlands., Van Douveren FQMP; Department of Orthopaedic Surgery & Trauma, Máxima Medical Centre, Veldhoven, the Netherlands., Witlox MA; Department of Orthopaedic Surgery & Trauma, Máxima Medical Centre, Veldhoven, the Netherlands.; Departement of Orthopaedic Surgery, Maastricht University Medical Center, Maastricht, the Netherlands., Tolk JJ; Department of Orthopaedics and Sports Medicine, Erasmus MC, Sophia Children's Hospital, Rotterdam, the Netherlands.
Jazyk:	angličtina
Zdroj:	Bone & joint open [Bone Jt Open] 2023 Jul 05; Vol. 4 (7), pp. 496-506. Date of Electronic Publication: 2023 Jul 05.
DOI:	10.1302/2633-1462.47.BJO-2023-0072.R1
Abstrakt:	Aims: The aim of this study was to identify the information topics that should be addressed according to the parents of children with developmental dysplasia of the hip (DDH) in the diagnostic and treatment phase during the first year of life. Second, we explored parental recommendations to further optimize the information provision in DDH care. Methods: A qualitative study with semi-structured interviews was conducted between September and December 2020. A purposive sample of parents of children aged younger than one year, who were treated for DDH with a Pavlik harness, were interviewed until data saturation was achieved. A total of 20 interviews with 22 parents were conducted. Interviews were audio recorded, transcribed verbatim, independently reviewed, and coded into categories and themes. Results: Interviews revealed four fundamental information topics that should be addressed in the different phases of the DDH healthcare trajectory: general information (screening phase), patient-specific information (diagnostic and treatment phase), practical information (treatment phase), and future perspectives (treatment and follow-up phase). To further optimize the information provision in DDH care, parents wished for more accessible and trustworthy general information prior to the first hospital visit to be better prepared for the diagnosis. Furthermore, parents wanted more personalized and visually supported information for a better understanding of the nature of the disease and the reason for treatment. Conclusion: This study offers novel insights to optimize the information provision in DDH care. The main finding is the shift in information need from general information in the screening phase to patient-specific information in the diagnostic and treatment phase of DDH. Parents prefer visually-supported information, provided in a timely fashion, and tailored to their child's situation. These recommendations potentially decrease parental anxiety, insecurity, confusion, and increase parental empowerment and treatment adherence throughout the diagnostic and treatment phase of DDH. Competing Interests: The authors have no conflicts of interest to disclose. (© 2023 Author(s) et al.)
Databáze:	MEDLINE
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