Roen Katrina, Lundberg Tove, Hegarty Peter, Liao Lih-Mei
School of Social Sciences, University of Waikato, Hamilton, New Zealand.
Department of Psychology, Lund University, Lund, Sweden.
Front Urol. 2023 Mar 29;3:1089198. doi: 10.3389/fruro.2023.1089198. eCollection 2023.
Over the past two decades, there has been a shift from concealing diagnoses of sex development from impacted people to the broad principle of age-appropriate disclosure. This change is consistent with children's rights and with general shifts towards giving children medical information and involving patients in medical decision-making. The present paper examines how health professionals, young people and caregivers with experience in this area talk about the process of telling children about a diagnosis relating to sex development. The focus is on (i) who is given the role of talking with children and young people about their medical condition and care in the context of a diagnosis relating to sex development and (ii) what strategies seem to work, and what dilemmas are encountered, in engaging children and young people in talk about their condition and healthcare.
Qualitative semi-structured interviews were carried out with 32 health professionals, 28 caregivers and 12 young persons recruited in the UK and Sweden, and thematic analysis was undertaken.
The analysis identifies strategies and dilemmas in communication and a widespread assumption that it is caregivers' responsibility to talk with childrenyoung people about the diagnosis. This assumption creates difficulties for all three parties. This paper raises concern about childrenyoung people who, despite a more patient-centred care ethos, are nevertheless growing up with limited opportunities to learn to talk about intersex or differences in sex development with confidence.
Learning to talk about this topic is one step towards shared decision-making in healthcare. A case is made for services to take clearer responsibility for developing a protocol for educating children and young people in ways that involve caregivers. Such a process would include relevant medical information as well as opportunities to explore preferred language and meaning and address concerns of living well with bodily differences.
在过去二十年里，对于性发育诊断的告知方式已发生转变，从向受影响者隐瞒诊断转变为遵循适合年龄公开的宽泛原则。这一变化符合儿童权利，也与普遍向儿童提供医疗信息并让患者参与医疗决策的转变相一致。本文探讨了在这一领域有经验的医疗专业人员、年轻人和照料者如何谈论向儿童告知性发育相关诊断的过程。重点在于：（i）在性发育相关诊断的背景下，谁被赋予了与儿童和年轻人谈论其病情及护理的角色；（ii）在促使儿童和年轻人谈论其病情及医疗护理方面，哪些策略似乎有效，又会遇到哪些困境。
对在英国和瑞典招募的32名医疗专业人员、28名照料者和12名年轻人进行了定性半结构化访谈，并开展了主题分析。
分析确定了沟通中的策略和困境，以及一种普遍的假设，即与儿童/年轻人谈论诊断是照料者的责任。这一假设给三方都带来了困难。本文对儿童/年轻人表示担忧，尽管护理理念更以患者为中心，但他们在成长过程中，有信心谈论双性人或性发育差异的机会仍然有限。
学会谈论这个话题是迈向医疗保健共同决策的一步。有理由要求服务机构更明确地负责制定一项协议，以一种让照料者参与的方式对儿童和年轻人进行教育。这样一个过程将包括相关的医疗信息，以及探索偏好的语言和含义、解决对带着身体差异健康生活的担忧的机会。
