Parental Perspectives on Decision-making about Hypospadias Surgery
Katherine H. Chan, MD, MPH, Janet Panoch, MA, Aaron Carroll, MD, MS, Sarah Wiehe, MD, Mark Cain, MD.
Indiana University School of Medicine, Indianapolis, IN, USA.
BACKGROUND: There is evidence of decisional conflict and regret in many parents who chose hypospadias repair for their sons. The purpose of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a hypospadias decision aid. METHODS: We recruited parents (≥ 18 years old) of hypospadias patients including parents of postoperative patients (surgery <6 months prior) and those who were awaiting repair, excluding parents <18 years old. We conducted semi-structured interviews to explore their role as proxy-decision-makers, inquiring about their emotions/concerns, informational needs and external/internal influences regarding the decision. We audio recorded and professionally transcribed the interviews, analyzing them iteratively using open, axial and selective coding. We used grounded theory methods to develop an explanation of the surgical decision-making process.
RESULTS: Of the 43 eligible parents we contacted, 16 mothers and 1 father participated: 8 preoperative and 9 postoperative, 15 Caucasians and 2 African-Americans, ages 21-43, with diverse educational backgrounds and marital status. Urethral location on the penis was distal (7), proximal (8) and missing (1). We coded parent responses regarding their decision into four major themes: (a) processing the diagnosis, (b) identifying parental knowledge gaps and concerns, (c) synthesizing new information, and (d) finalizing the decision. At the time of diagnosis, parents found comfort in the common occurrence of hypospadias and the relatively mild degree of their sons’ hypospadias compared to others. Their primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. They synthesized information from the Internet, their social network and their medical providers as they sought to relieve confusion and anxiety. Many sought information online but expressed concerns about reliability of the websites. Most cited the critical importance of building trust/confidence in their child’s surgeon due to provider behaviors such as reassurance, information provision and self-disclosure about their surgical experience. CONCLUSIONS: Parents typically experience anxiety/confusion in all stages of the decision-making process about hypospadias surgery as they synthesize information from a variety of sources. The establishment of trust and confidence in the surgeon are critical elements of the decision-making process.
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