Faculty of Medicine, Health and Life Science, Swansea University, Swansea, Wales, UK.
Health Expect. 2023 Dec;26(6):2666-2683. doi: 10.1111/hex.13864. Epub 2023 Sep 11.
More than 90% of deaf children are born to hearing families who know little about deafness. Benefits from hearing screening at birth are often lost, as families find little information about pathways for deaf children but are key to ensuring deaf children receive relevant language and communication support. Systems surrounding deaf children and family members are crucial for children's health and social development. Experiences of hearing parents raising deaf children and understanding factors that influence families' experience of navigating pathways for deaf children through health and education services are currently underreported.
An exploratory study was conducted in Wales, UK. Twenty participants were interviewed, including 10 hearing parents of deaf children and 10 people who work with deaf children using semistructured interviews. Bronfenbrenner's ecological systems theory was used as a lens to explore the micro-, meso-, exo-, macro- and chronosystems that surround children and families. This study explores potential supports and barriers in those systems.
Findings are reported under two broad headings: enablers and barriers. Under enablers, it was found that provision of resources, supporting people and knowledge were key factors. Under barriers, a lack of knowledge, lack of provision and battling services and attitudes were key issues that need addressing.
Hearing parents of deaf children in Wales, UK reported experiencing a range of enablers and barriers that impact upon their experiences of raising a deaf child. Further provision is needed by policymakers and governments to recognise support needs to improve the outcomes for deaf children.
This project was developed from initial discussions with the stakeholder reference group and progressed with the group's deaf panel and hearing parents with deaf children. The project's steering group was involved in study design, recruitment and continuous feedback on all stages of the research process.
超过 90%的聋儿都出生在对耳聋知之甚少的听人家中。由于家庭对聋儿的发展途径几乎一无所知，导致出生听力筛查的益处往往会丧失，而这些信息对确保聋儿获得相关的语言和交流支持至关重要。围绕聋儿及其家庭成员的系统对儿童的健康和社会发展至关重要。听力正常的父母抚养聋儿的经历以及影响家庭通过健康和教育服务为聋儿选择发展途径的因素，目前的相关报道较少。
本研究在英国威尔士进行了一项探索性研究。共对 20 名参与者进行了访谈，其中包括 10 名聋儿的听力正常父母和 10 名为聋儿提供服务的工作人员，访谈采用半结构化访谈。本研究使用布朗芬布伦纳的生态系统理论作为视角，探讨了围绕儿童及其家庭的微观、中观、外显、宏观和历时系统。本研究探讨了这些系统中的潜在支持和障碍因素。
研究结果主要分为两个方面：促进因素和障碍因素。在促进因素方面，发现提供资源、支持人员和知识是关键因素。在障碍因素方面，缺乏知识、缺乏资源以及与服务和态度的斗争是需要解决的关键问题。
英国威尔士的听力正常的聋儿父母报告称，他们在抚养聋儿时经历了一系列的促进因素和障碍因素，这些因素影响了他们的经历。政策制定者和政府需要进一步提供支持，以满足支持需求，从而改善聋儿的结局。
本项目最初是与利益相关者参考小组进行讨论后提出的，并在小组的聋人小组和有聋儿的听力正常父母的参与下得到了推进。项目指导小组参与了研究设计、招募工作，并对研究过程的所有阶段持续提供反馈。
