Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung’s Disease

Violet Steeghs*, G IK Mogami-Asselin, M D Nijenkamp, Marjolein Spoel, J EW Broerse, CACM Pittens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Scopus)
29 Downloads (Pure)

Abstract

The aim of this study is to develop a tool that is aligned with patients’ and health professionals’ needs to address sexual health in the context of anorectal malformations and Hirschsprung’s disease. A multiphased participatory action–research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites’ functionality was assessed via a questionnaire (n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists’ involvement in current care pathways.
Original languageEnglish
Article numberDOI: 10.1177/1049732320944653
Pages (from-to)2033-2048
Number of pages16
JournalQualitative Health Research
Volume30
Issue number13
DOIs
Publication statusPublished - 7 Aug 2020

Bibliographical note

Funding:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received financial support from Innovatiefonds
Zorgverzekeraars for conducting the research (nr. B17-180/
Dossier 3.501).

member of Consortium SPCC as explained on page 2034 of this paper

Research programs

  • ESHPM - non EUR result

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