Parental perspectives on decision-making about hypospadias surgery.

INTRODUCTION: Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making. OBJECTIVE: The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid. STUDY DESIGN: We conducted semistructured interviews were conducted with parents of children with hypospadias to explore their role as proxy decision-makers, inquiring about their emotions/concerns, informational needs, and external/internal influences. Interviews were conducted until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. Grounded theory methods were used to develop an explanation of the surgical decision-making process. RESULTS: Sixteen mothers and one father of seven preoperative and nine postoperative patients (n = 16) with distal (8) and proximal (8) meatal locations were interviewed. Four stages of the surgical decision-making process were identified: (1) processing the diagnosis, (2) synthesizing information, (3) processing emotions and concerns, and (4) finalizing the decision (Extended Summary Figure). Core concepts in each stage of the decision-making process were identified. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers, and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child's surgeon. DISCUSSION: The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multifaceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities, and same-sex couples. CONCLUSIONS: This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. Future stages of decision aid development will focus on recruitment of fathers, minorities, and same-sex couples in order to enrich the perspectives of our work.

Community engagement of adolescents in the development of a patient-centered outcome tool for adolescents with a history of hypospadias repair.

INTRODUCTION: Hypospadias may lead to long-term issues with urination, sexual function and psychosocial well-being. Limited evidence exists regarding the healthcare communication preferences of male adolescents regarding sensitive topics. OBJECTIVE: The purpose of this qualitative study was to explore the healthcare communication preferences of male adolescents regarding sensitive topics (e.g. urinary and sexual issues) and engage them in the initial stages of development of a patient-centered outcome tool for adolescents with a history of hypospadias repair. STUDY DESIGN: A multidisciplinary team with communication design expertise, pediatric urology experts, and health services researchers developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing/diagramming exercises and scales to facilitate participant reflections about genital appearance, urination, sexual function, and psychosocial well-being. We recruited students from two local high schools for two focus groups to obtain feedback about the usability/acceptability of the toolkit's appearance/content. We inquired about language preferences and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed, checked for accuracy, and analyzed by two coders using qualitative content analysis. Major themes and subthemes were identified, and representative quotes were selected. RESULTS: We conducted two focus groups in January 2018 with 33 participants, aged 14-18 years. Participants preferred language that would make patients feel comfortable and serious, clinical language rather than slang terms/sexual humor (Extended Summary Table). They recommended avoidance of statements implying that something is wrong with a patient or statements that would pressure the patient into providing answers. They suggested fill-in-the-blank and open-ended responses to encourage freedom of expression and colorful graphics to de-emphasize the test-like appearance of the toolkit. Most participants preferred a toolkit format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants would prefer either a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews, and they recommended a focus group leader with a history of hypospadias repair. DISCUSSION: This study provides a rich description of a group of male high school students' experiences with healthcare providers and researchers. Its qualitative design limits generalizability, and our findings may not be similar to those of adolescents with a history of hypospadias repair. CONCLUSION: We used focus group feedback on the toolkit prototype to refine the tool for use in a future study of adolescents with a history of hypospadias repair.

[Speech perception in noise with and without FM technology]. / Sprachverständnis im Störgeräusch mit und ohne Frequenzmodulationsanlage.

BACKGROUND: In the presence of a (central) auditory processing disorder [(C)APD] central hearing processes are disturbed, leading to impaired speech perception in noise. Poor acoustics in educational institutions exacerbates the problem. In children affected by (C)APD this can result in impaired development of language, reading and writing acquisition as well as other skills. MATERIALS AND METHODS: A total of 66 children aged 6-11 years completed the Oldenburg sentence test in noise (OlSa) with and without an FM system. Children with normal OlSa test results formed the control group (group 1), while group 2a comprised children with an unremarkable re-test result and group 2b comprised children who produced abnormal results even in the re-test. RESULTS: All children achieved improved speech intelligibility using the FM system. The greatest difference between results with and without FM system was seen in group 2b (9.53 dB S/N). Group 1 achieved an improvement of 8.86 dB S/N and group 2a 7.89 dB S/N. CONCLUSIONS: Children with detected auditory selection problems benefit most from the use of an FM system for improved speech understanding. This should be borne in mind in the diagnosis and therapy of these children.