The University of Queensland, Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, Australia.
The University of Queensland, School of Health and Rehabilitation Sciences, Faculty of Health and Behavioural Sciences, Australia.
Res Dev Disabil. 2021 Jun;113:103957. doi: 10.1016/j.ridd.2021.103957. Epub 2021 Apr 15.
Accurate diagnosis of cerebral palsy (CP) high-risk status is now possible in infants less than six months corrected age. Parents play a central role in providing nurturing care and implementing early intervention approaches. To design interventions tailored to needs of parents and understand how to improve parental support, this study aimed to understand the influences shaping parent experiences with an infant at high-risk of CP in West Bengal, India.
This phenomenological qualitative study was conducted with parents of infants at high-risk of CP in West Bengal, India. Individual in-depth interviews explored experiences with health providers, supports for caregiving and challenges of parenting. Interviews were conducted in English with concurrent translation and analysed using thematic analysis.
Main themes included: limited finances and social networks shape decisions and caregiving practices; trust in the formal health care system; views of disability including explanations for their infant's condition and expectations for the child's future, and everyday adaptations required to meet infants' needs.
Low cost models of early intervention may alleviate the financial burden and stress on families. Dependence on health care professionals for care management is a barrier to family-delivered approaches to care.
现在，在六个月以下的婴儿纠正年龄时，就可以准确地诊断脑瘫（CP）高危状态。父母在提供养育关怀和实施早期干预方法方面发挥着核心作用。为了设计针对父母需求的干预措施并了解如何改善父母的支持，本研究旨在了解在印度西孟加拉邦，影响 CP 高危婴儿父母经历的因素。
本现象学定性研究在印度西孟加拉邦 CP 高危婴儿的父母中进行。个体深入访谈探讨了与医疗保健提供者的经验、照顾支持和育儿挑战。访谈以英语进行，并进行了同声翻译，并使用主题分析进行了分析。
主要主题包括：有限的财务和社交网络影响决策和照顾方式；对正规医疗保健系统的信任；对残疾的看法，包括对婴儿病情的解释和对孩子未来的期望，以及满足婴儿需求所需的日常适应。
低成本的早期干预模式可能减轻家庭的经济负担和压力。对医疗保健专业人员护理管理的依赖是家庭提供护理方法的障碍。
