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 Center of Molecular Medicine, Karolinska Institutet, Stockholm, Sweden.
Department of Social Work, Stockholm University, Stockholm, Sweden.
Front Pediatr. 2023 Feb 17;11:1118586. doi: 10.3389/fped.2023.1118586. eCollection 2023.
There is a lack of studies on men's individual experiences of living with hypospadias. We aimed to explore the personal experiences of having hypospadias in relation to healthcare and surgery.
Purposive sampling was used to include men (aged 18 and over) with hypospadias representing different phenotypes (from distal to proximal) and ages in order to maximise the variation and richness of our data. Seventeen informants, aged 20-49, were included in the study. In-depth semi-structured interviews were conducted between 2019 and 2021. Inductive qualitative content analysis was used to analyse the data.
We identified three categories: (1) , which comprised the decision to operate, the experience of having surgery, and the outcomes of surgery; (2) , which focused on follow-up care, re-entering care in adolescence or adulthood, and the experience of healthcare interactions; (3) , both about hypospadias in general, as well as about your specific body and medical history. There was overall a large variation in experiences. The latent theme across the data was the importance of .
The experience of men with hypospadias in healthcare is complex and varied, highlighting the difficulty of fully standardised care. Based on our results, we suggest that follow-up should be offered in adolescence, and that ways of accessing care for late onset complications be made clear. We further suggest clearer consideration for the psychological and sexual aspects of hypospadias. Consent and integrity in all aspects and all ages of hypospadias care should be adapted to the maturity of the individual. Access to trustworthy information is key, both directly from educated healthcare staff and if possible, from websites or patient-led forums. Healthcare can play a key role in providing the growing individual with tools to understand and address concerns that may develop relating to their hypospadias through life, giving them ownership over their own narrative.
关于男性尿道下裂患者个人生活经历的研究较少。我们旨在探讨尿道下裂患者在医疗保健和手术方面的个人经历。
采用目的抽样法纳入年龄在18岁及以上、代表不同表型（从远端到近端）和年龄的尿道下裂男性，以最大限度地增加数据的多样性和丰富性。17名年龄在20 - 49岁的受访者被纳入研究。在2019年至2021年期间进行了深入的半结构化访谈。采用归纳定性内容分析法对数据进行分析。
我们确定了三个类别：（1）手术相关，包括手术决策、手术经历和手术结果；（2）后续护理相关，重点关注后续护理、青春期或成年期再次接受护理以及医疗互动经历；（3）疾病与自身相关，既包括一般的尿道下裂情况，也涉及个人具体身体状况和病史。总体而言，经历差异很大。数据中的潜在主题是[此处原文缺失具体内容]的重要性。
尿道下裂男性在医疗保健方面的经历复杂多样，凸显了完全标准化护理的困难。根据我们的研究结果，我们建议在青春期提供随访，并明确迟发性并发症的就医途径。我们还建议更明确地考虑尿道下裂的心理和性方面。尿道下裂护理在各个方面和各个年龄段的同意和完整性应适应个体的成熟度。获取可靠信息是关键，既可以直接从受过教育的医护人员那里获得，也可以尽可能从网站或患者主导的论坛获得。医疗保健可以发挥关键作用，为成长中的个体提供工具，以理解和解决可能在其一生中出现的与尿道下裂相关的问题，让他们成为自己故事的主人。
