Knowledge gaps and information seeking by parents about hypospadias. Issue 2 (April 2020)

• Record Type: Journal Article
• Authors: Chan, Katherine H.; Panoch, Janet; Carroll, Aaron; Wiehe, Sarah; Cain, Mark P.; Frankel, Richard
• Is Part Of: Journal of pediatric urology. Volume 16:Issue 2(2020)
• Page Start: 166.e1
• Page End: 166.e8
• Publication Date: 2020-04
• Subjects: Decision-making -- Pediatrics -- Hypospadias -- Qualitative research; Pediatric urology -- Periodicals; Urologic Diseases -- Periodicals; Urogenital Diseases -- Periodicals; Urologic Surgical Procedures -- Periodicals; Child; Infant; Urologie pédiatrique -- Périodiques; Appareil urinaire -- Maladies -- Périodiques; Pédiatrie; Urologie; Pediatric urology; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); Electronic journals; Periodicals; Electronic journals; 618.926
• DOI: 10.1016/j.jpurol.2020.01.008
• Languages: English
• ISSNs: 1477-5131

Abstract

Extended Summary: Introduction: Parents making complex decisions about hypospadias surgery may experience anxiety and uncertainty related to multiple sources of information with questionable reliability and limited relevance to their concerns. Objective: The purpose of this study was to identify knowledge gaps, information-seeking behaviors, and informational needs of parents making decisions about hypospadias surgery as an initial step in the development of a hypospadias decision aid. Study design: We conducted semi-structured interviews with English-speaking parents (≥18 years of age) of children with hypospadias, inquiring about gaps in their knowledge, information-seeking behaviors, and perceived informational needs (Extended Summary Table). We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. We used grounded theory methods to develop an explanation of the information-seeking process about hypospadias surgery. Results: Of the 43 eligible parents, 16 mothers and 1 father (39.5%) of 16 patients participated: 7 preoperative and 9 postoperative with distal (8) and proximal (8) meatal locations. Parents were aged 21–43: 15 Caucasians and 2 African-Americans. Educational backgrounds and marital status varied across subjects. We identified five categories of knowledge gaps relating to hypospadias surgery: 1) epidemiology, 2) timing/technique, 3) perioperative experience, 4) long-term cosmetic outcome, and 5) long-term risk of complications. Information-seeking behaviors included searching the internet, discussing hypospadias with the child's pediatrician and/or urologist, and obtaining information from their social network. Most parents sought information online prior to and/or after consultation with the urologist, from parent blogs/forums, medical school/hospital websites, journal articles, and medical databases. Perceived informational needs included clear and reliable information online, images of mild degrees of hypospadias, and images of repaired hypospadias cases. According to the parents, video testimonials from other parents would help them relate to others in their social network and build confidence about the surgical process. Discussion: The findings of this study contribute to our understanding of parental decision-making about hypospadias surgery by highlighting specific knowledge gaps and informational needs for inclusion in a decision aid. Study limitations include a small sample size that is typical and expected for qualitative research studies and the underrepresentation of fathers, minorities, and same-sex couples. Conclusions: The Internet is the primary source of information most parents use to address knowledge gaps about hypospadias. Parents expressed concerns about the reliability and clarity of information and identified informational needs including parent testimonials and a wide variety of hypospadias images for inclusion in a decision aid. Extended Summary Table Example questions from semi-structured interviews with parents of pediatric patients with hypospadias. Extended Summary Table Knowledge gaps Please describe your son's medical condition in your own words. What were some of your initial questions/concerns about hypospadias? What questions did you have for the urologist at the time of the clinic visit? What concerns were not addressed at the visit? Is there anything else that you would like to share Information-seeking behavior How did you get more information about your son's condition? What information has been most (and least) helpful to you in understanding your son's condition? What information has been most (and least) helpful to you in making a decision about surgery? Is there anything I didn't ask about that you would like to share? Informational needs Think about how you learn or process medical information. How helpful would the following options be for learning more about hypospadias surgery? Please explain why: Watching/listening to video/audio testimonials of parents reflecting on the things they considered when making a decision about surgery Listening to an audio description of the surgery Watching an animated video of the surgery Looking at photographs or drawings of the surgery with a description of the steps Reading paper brochures and/or taking notes on paper during the clinic visit Looking at a three-dimensional model of a penis to help visualize the surgery Completing an interactive learning module on the Internet or your smart phone