PARENTAL PERCEPTIONS, PERCEIVED RESOURCESAND ATTITUDES TOWARDS DISCLOSURE OF HYPOSPADIAS REPAIR
Melissa McGrath, BASc, Udi Blankstein, MD, Luis H. Braga, MD, PhD.
McMaster University, Hamilton, ON, Canada.
BACKGROUND: Boys with hypospadias often undergo reconstructive surgery to improve cosmetic appearance and functional outcomes. While the ethics of physician-patient disclosure of illness are clear, parent-child disclosure is more ambiguous. There is a paucity of research regarding the parental disclosure of past urological procedures, specifically hypospadias repair. Our objective was to to determine the rate of parental disclosure in boys undergoing hypospadias repair, and to evaluate the parental perspectives regarding concerns and amount of support in relation.
METHODS: A web-based questionnaire was distributed to parents of hypospadias patients at our pediatric urology outpatient clinic, and to those belonging to closed social media support groups. Data was analyzed using descriptive statistics and chi-squares.
RESULTS: Two hundred and four complete survey responses were collected. The majority of respondents were North American (83%), urban dwellers (72%), and the mothers of the child (81%). Distal hypospadias was the most common variant of the condition (63%) followed by proximal (20%). When asked if they plan to disclose the repair to their child, 93% said "yes", and of those, the optimal mean age of disclosure was 6.80 ± 4.56 years. Ninety percent reported that they were not offered guidance on how/when to disclose, 48% thought they would benefit from support on this and 64% had accessed online information/support groups with 43% of them for the purpose of education about hypospadias. There was a significant difference in nervousness to disclose if the condition was distal (79%) versus proximal (100%) (p= <0.01). A significant difference was also observed regarding disclosure support with proximal being more likely to want formal support (p=0.05). Almost all parents (94%) said they had not been counselled on disclosing.
CONCLUSIONS: To our knowledge, this is the first study to evaluate perceptions and attitudes around disclosure in patients with hypospadias and their families. The majority of respondents were planning to disclose the operation to their child, and were not offered any guidance or support as to the optimal way to disclose. Half of those parents thought they could benefit from resources to help them with this process. In addition half of parents accessed information online regarding the condition in addition to clinician education. Further research is required to understand the impact of disclosure and to create tools to help caregivers with this responsibility.
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