Nevill Thom, Keely Jessica, Skoss Rachel, Collins Rachel, Langdon Katherine, Mills Jaquie, Downs Jenny
The Kids Research Institute Australia, Centre for Child Health Research, University of Western Australia, Perth, Australia.
Institute for Health Research, University of Notre Dame, Perth, Australia.
Health Expect. 2025 Feb;28(1):e70138. doi: 10.1111/hex.70138.
Appropriate support for the health of children with an intellectual disability by parents and healthcare professionals is pivotal, given the high risk of chronic conditions. However, there is limited research that has collected important insights from parents on their learnings for supporting their child's evolving healthcare needs.
This study focuses on parents' experiences and learnings from managing and supporting the health of their child with intellectual disability. It aims to understand what parents wish they had known earlier, the essential knowledge and skills they needed to manage their child's health.
A qualitative study was carried out using semi-structured interviews with 21 parents of adolescents and young people with intellectual disability. The children had chronic health conditions that fell into six health domains, including (1) difficulties with movement and physical activity, (2) epilepsy, (3) dental care, (4) respiratory health and infection, (5) behaviour, mental health or sleep and (6) gastrointestinal health.
Thematic analysis yielded five themes: (1) optimising mutual engagement between healthcare professionals and families; (2) planning and practising effective healthcare; (3) having the right information at the right time; (4) finding the support that was needed and (5) navigating healthcare and disability systems. Over time, parents developed specific skills and knowledge for managing their child's health effectively. Some parents expressed regret for not seeking support and information about their child's health conditions earlier. Parents described how mutual engagement between healthcare professionals and parents optimised the management of their child's healthcare.
The study found that managing the health of a child with intellectual disability is complex. The themes were consistent across health comorbidities, indicating important common experiences. The themes aligned with conceptualisations of health literacy, suggesting that improving health literacy skills can help parents better manage their children's health conditions.
We developed the project in consultation with members of the public who have lived experience of parenting a child with intellectual disability. They commented on the study aims, interview schedule, participant recruitment and provided feedback on the analysis and discussion.
鉴于慢性病风险高，父母和医疗保健专业人员为智障儿童的健康提供适当支持至关重要。然而，从父母那里收集有关他们在满足孩子不断变化的医疗需求方面的经验教训的重要见解的研究有限。
本研究关注父母在管理和支持智障儿童健康方面的经验和教训。旨在了解父母希望自己更早知晓的事情，以及他们管理孩子健康所需的基本知识和技能。
采用定性研究方法，对21名智障青少年和年轻人的父母进行半结构化访谈。这些孩子患有慢性健康问题，分属六个健康领域，包括：（1）运动和身体活动困难；（2）癫痫；（3）牙齿护理；（4）呼吸健康与感染；（5）行为、心理健康或睡眠；（6）胃肠道健康。
主题分析得出五个主题：（1）优化医疗保健专业人员与家庭之间的相互参与；（2）规划和实施有效的医疗保健；（3）在正确的时间获取正确的信息；（4）找到所需的支持；（5）在医疗保健和残疾系统中导航。随着时间的推移，父母掌握了有效管理孩子健康的特定技能和知识。一些父母对没有更早寻求有关孩子健康状况的支持和信息表示遗憾。父母描述了医疗保健专业人员与父母之间的相互参与如何优化了孩子医疗保健的管理。
研究发现，管理智障儿童的健康很复杂。这些主题在各种健康合并症中是一致的，表明存在重要的共同经历。这些主题与健康素养的概念相符，表明提高健康素养技能可以帮助父母更好地管理孩子的健康状况。
我们与有养育智障儿童亲身经历的公众成员协商制定了该项目。他们对研究目的、访谈时间表、参与者招募发表了评论，并对分析和讨论提供了反馈。
