Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research Pub Date : 2025-03-03 DOI:10.1111/jir.13222

Yvonne Yee Lok Lai, Sobia Zafar, Helen Margaret Leonard, Laurence James Walsh, Jenny Anne Downs

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引用次数: 0

Abstract

Background

Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome (RTT). There are also few peer-reviewed studies in the Australian context exploring barriers to dental care access for patients living with a disability. This qualitative study explored caregivers' perceptions and experiences regarding oral health and access to dental care for those with RTT in Australia.

Methods

Parents of 31 individuals with a confirmed MECP2 mutation were sampled purposively from the Australian Rett Syndrome Database. Interview questions were based on earlier studies used in other disability populations and queried identification and management of dental pain and influence of other comorbidities in their child's oral care. Interviews were audio-recorded, transcribed and analysed using NVivo (Version 12 Plus). Directed content analysis was used to code data to a framework constructed from a literature review of factors affecting access to professional oral healthcare systems and factors affecting access to optimal at-home oral care in disability.

Results

The most frequently cited barriers to professional dental care were dentist-related, while caregiver related financial barriers were cited by a minority of families. Dentist-related financial barriers were not present in these data. Most factors affecting access to optimal at-home oral care coded to the existing framework, with further enablers identified under training for the caregiver or parent.

Conclusions

The findings of this study provide a point of reference to understand factors affecting provision of at-home dental care and professional services to enable optimal oral health in RTT. Future research could explore the provision of targeted oral health information on RTT to carers and clinicians.

查看原文本刊更多论文

Rett综合征患者获得口腔保健的途径：父母视角的定性研究。

背景：智力和发育障碍（IDD）在其性质和表现上各不相同。在对普通IDD人群的研究中报告了口腔保健方面的障碍，但这些可能无法反映患有罕见疾病（如Rett综合征）的个体所经历的障碍。在澳大利亚，也很少有同行评议的研究探讨残疾患者获得牙科护理的障碍。本定性研究探讨了护理人员对澳大利亚RTT患者口腔健康和获得牙科护理的看法和经验。方法：有目的地从澳大利亚Rett综合征数据库中抽取31例MECP2突变确诊个体的父母。访谈问题基于在其他残疾人群中使用的早期研究，并询问了对牙痛的识别和管理以及其他合并症对其子女口腔护理的影响。访谈录音，转录和分析使用NVivo （Version 12 Plus）。直接内容分析用于将数据编码为一个框架，该框架是根据影响专业口腔保健系统获取的因素和影响残疾人获得最佳家庭口腔护理的因素的文献综述构建的。结果：专业牙科护理最常见的障碍是与牙医相关的，而少数家庭提到的与护理人员相关的经济障碍。这些数据中不存在与牙医相关的经济障碍。影响获得最佳家庭口腔护理的大多数因素编码到现有框架中，并通过对护理人员或家长的培训确定进一步的促进因素。结论：本研究结果为了解影响家庭牙科护理和专业服务提供的因素提供了参考点，以实现RTT的最佳口腔健康。未来的研究可以探索为护理人员和临床医生提供有针对性的口腔健康信息。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Intellectual Disability Research Multiple-

CiteScore

5.60

自引率

5.60%

发文量

期刊介绍： The Journal of Intellectual Disability Research is devoted exclusively to the scientific study of intellectual disability and publishes papers reporting original observations in this field. The subject matter is broad and includes, but is not restricted to, findings from biological, educational, genetic, medical, psychiatric, psychological and sociological studies, and ethical, philosophical, and legal contributions that increase knowledge on the treatment and prevention of intellectual disability and of associated impairments and disabilities, and/or inform public policy and practice. Expert reviews on themes in which recent research has produced notable advances will be included. Such reviews will normally be by invitation.