Nursing Department, KK Women's and Children's Hospital, Singapore.
Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
J Dev Behav Pediatr. 2020 Dec;41(9):730-739. doi: 10.1097/DBP.0000000000000880.
Caregiver burden of parents of children with disabilities is negatively associated with parental quality of life and psychosocial well-being and has been identified as a public health concern. Reviews have consolidated the experiences of these parents, but little is understood about the unique challenges faced by parents of children with cerebral palsy (CP). We aim to conduct an in-depth synthesis of the experiences and needs of parents of children with CP to better support them.
Six electronic databases were searched systematically for qualitative research, and a thematic synthesis was performed.
Seventeen studies from 1988 to 2019 encapsulating the experiences of 226 parents were included in this review. Four themes and 11 subthemes were identified: (1) self: the caregiver-parent trajectory (coming to terms with the fact, physical and emotional demands, and a nice outlet), (2) family: maintaining the family unit (juggling multiple children and parenting as a co-occupation), (3) society: social repercussions (facing public discrimination, rejection by extended family, and loss of freedom), and (4) parents' wish list (open communication and caring attitudes, funding and health care accessibility, social integration, and inclusivity). Apart from emotional adaptation and physical childcare difficulty, parents indicated a need for more information on health care services, funding, better attitudes and empathy from health care providers, properly trained educators, disability-friendly fixtures, and more public awareness.
The findings in this review provide insight into the true experiences and needs of parents caring for children with CP and will aid clinicians in the development of family-centered care pathways for these patients.
照顾残疾儿童的父母的负担与父母的生活质量和心理社会健康呈负相关，已被确定为公共卫生关注的问题。综述综合了这些父母的经验，但对于脑瘫（CP）儿童父母所面临的独特挑战知之甚少。我们旨在深入综合脑瘫儿童父母的经历和需求，以更好地支持他们。
系统地在六个电子数据库中搜索定性研究，并进行主题综合。
本综述共纳入了 1988 年至 2019 年的 17 项研究，涵盖了 226 名父母的经验。确定了四个主题和 11 个亚主题：（1）自我：照顾者-父母轨迹（接受现实、身体和情绪需求以及一个不错的发泄口），（2）家庭：维持家庭单位（兼顾多个孩子和作为共同职业的育儿），（3）社会：社会反响（面临公众歧视、大家庭拒绝和自由丧失），以及（4）父母的愿望清单（开放沟通和关怀态度、资金和医疗保健可及性、社会融合和包容性）。除了情绪适应和照顾孩子的身体困难外，父母还表示需要更多关于医疗服务、资金、医疗保健提供者的态度和同理心、受过适当培训的教育工作者、残疾友好型固定装置以及更多公众意识的信息。
本综述中的研究结果深入了解了照顾脑瘫儿童的父母的真实经历和需求，将有助于临床医生为这些患者制定以家庭为中心的护理途径。
