Alqahtani Ashwaq, Sahely Ahmad, Aldersey Heather M, Finlayson Marcia, Macdonald Danielle, Fakolade Afolasade
Department of Physical Therapy, College of Applied Medical Sciences, Qassim University, Almulaida 52571, Saudi Arabia.
School of Rehabilitation Therapy, Queen's University, Kingston, ON K7L 3N6, Canada.
Int J Environ Res Public Health. 2025 Jun 17;22(6):946. doi: 10.3390/ijerph22060946.
Parents provide most of the support needed for children with cerebral palsy (CP) to increase the child's participation and independence. Understanding the experiences of parents caring for children with CP is essential for developing effective family programs and services. The current knowledge about parents' experiences in CP is based on studies in Western countries, with little known about this phenomenon in Arab countries like Saudi Arabia. This study aimed to understand the unique experiences and support needs of Saudi parents caring for children with CP from a social-ecological perspective. We conducted a qualitative, exploratory, descriptive study involving 12 semi-structured interviews with mothers and fathers of children with different types of CP. We analyzed the data using a reflexive thematic approach, following six distinct phases. Participants' narratives revealed a complex caregiving journey marked by both challenges and rewards. Support from Saudi nuclear and extended family members was considered important; however, many parents expressed a need for additional physical and financial assistance from their families. Parents reported feeling stressed and experiencing challenges in accessing and navigating educational and healthcare services. Our findings highlight that Islamic values play a crucial role in the experiences of Saudi parents. These values foster a sense of collectivism, highlighting the importance of family support and community involvement, which can affect the Saudi caregiving environment. Parents remain an essential yet often invisible part of the Saudi caregiving system. Without adequate support, parents are at risk of experiencing social, financial, academic, physical, and mental health challenges, which may affect their overall family well-being. Future work may need to consider spiritual and gender roles when developing programs or services to support Saudi parents of children with CP.
父母为脑瘫（CP）患儿提供了大部分所需支持，以提高孩子的参与度和独立性。了解照顾脑瘫患儿的父母的经历对于制定有效的家庭计划和服务至关重要。目前关于父母照顾脑瘫患儿经历的知识基于西方国家的研究，对于沙特阿拉伯等阿拉伯国家的这一现象知之甚少。本研究旨在从社会生态视角了解沙特阿拉伯照顾脑瘫患儿的父母的独特经历和支持需求。我们开展了一项定性、探索性、描述性研究，对不同类型脑瘫患儿的父母进行了12次半结构化访谈，访谈对象包括母亲和父亲。我们采用反思性主题分析法对数据进行分析，共分为六个不同阶段。参与者的叙述揭示了一段充满挑战与收获的复杂护理历程。沙特阿拉伯核心家庭和大家庭成员的支持被认为很重要；然而，许多父母表示需要家人提供更多的物质和经济援助。父母们报告称，在获取和使用教育及医疗服务方面感到压力重重并面临挑战。我们的研究结果表明，伊斯兰价值观在沙特阿拉伯父母的经历中起着至关重要的作用。这些价值观培养了集体主义意识，凸显了家庭支持和社区参与的重要性，这可能会影响沙特阿拉伯的护理环境。父母仍然是沙特阿拉伯护理体系中不可或缺但往往不为人所见的一部分。如果没有足够的支持，父母有面临社会、经济、学业、身体和心理健康挑战的风险，这可能会影响他们整个家庭的幸福。未来在制定支持沙特阿拉伯脑瘫患儿父母的计划或服务时，可能需要考虑精神因素和性别角色。
