Phillips Lottie, Dennermalm Nicklas, Örtqvist Lisa, Engberg Hedvig, Holmdahl Gundela, Fossum Magdalena, Möller Anders, Nordenskjöld Agneta
Department of Women's and Children's Health and Centre of Molecular Medicine, Karolinska Institutet, Stockholm, Sweden.
Department of Social Work, Stockholm University, Stockholm, Sweden.
Front Pediatr. 2024 Aug 29;12:1459561. doi: 10.3389/fped.2024.1459561. eCollection 2024.
There is a lack of in-depth studies on men's personal experiences of having hypospadias across different aspects of their lives. We therefore aimed to explore the experience of having hypospadias in relation to identity and interpersonal relationships.
Using purposive sampling, we included 17 adult men aged 20-49 with variation in hypospadias phenotype. The informants further represented variation in sexuality, relationship status, parental status, and familial cultural context. In-depth interviews were conducted with each informant and the data was analysed using qualitative content analysis.
We identified four categories. Firstly, e in relation to being different, being impacted, and being masculine. The remaining three categories related to interpersonal spaces: , comprising personal relationship with sex, having sex, and being in a relationship; , comprising being a son, and becoming a father; and , comprising being hidden, being naked, and peeing. We identified the latent theme , highlighting differences in experiences relating to both the internal and interpersonal.
Issues related to hypospadias included struggles with identity and confidence, as well as recurring patterns of social and sexual avoidance. While informants generally related to certain shared experiences, there is large variation in how much hypospadias impacts life, ranging from hardly at all to extensively. This could also fluctuate over time, with puberty and adolescence being an especially sensitive period. Functional and aesthetic outcomes are potentially important for well-being, especially in the case of more severe complications, while personal and interpersonal circumstances play a role in coping and the overall experience of the individual.
Healthcare, research, and other channels such as patient groups may be able to offer support to those who need it to help more boys and men with hypospadias live unhindered lives.
目前缺乏对男性尿道下裂患者在生活各个方面个人经历的深入研究。因此，我们旨在探讨尿道下裂患者在身份认同和人际关系方面的经历。
采用目的抽样法，纳入17名年龄在20 - 49岁之间、尿道下裂表型各异的成年男性。这些受试者在性取向、恋爱状况、父母身份和家庭文化背景等方面也存在差异。对每位受试者进行了深入访谈，并采用定性内容分析法对数据进行了分析。
我们确定了四个类别。首先，与与众不同、受到影响和男性气质有关。其余三个类别与人际空间有关：，包括与性的个人关系、性行为和恋爱关系；，包括作为儿子和成为父亲；以及，包括被隐藏、裸体和排尿。我们确定了潜在主题，突出了内部和人际经历方面的差异。
与尿道下裂相关的问题包括身份认同和自信方面的挣扎，以及社交和性回避的反复模式。虽然受试者普遍有某些共同经历，但尿道下裂对生活的影响程度差异很大，从几乎没有影响到广泛影响。这种影响也可能随时间波动，青春期是一个特别敏感的时期。功能和美学结果对幸福感可能很重要，尤其是在出现更严重并发症的情况下，而个人和人际环境在应对以及个体的整体经历中发挥着作用。
医疗保健、研究以及患者群体等其他渠道或许能够为有需要的人提供支持，以帮助更多患有尿道下裂的男孩和男性过上不受阻碍的生活。
