Barak Sharon, Elad Dina, Gutman Dafna, Silberg Tamar
School of Health Sciences, Ariel University, Ariel, Israel.
Department of Pediatric Rehabilitation, The Edmond and Lily Safra Children's Hospital, Sheba Medical Center, Ramat Gan, Israel.
Child Care Health Dev. 2023 May;49(3):518-528. doi: 10.1111/cch.13066. Epub 2022 Oct 20.
Parents report both positive and negative experiences associated with raising a child with a physical disability. However, distinctive factors may affect children and families differently.
Using a biopsychosocial approach, the current study expands on the existing literature on the general impact of raising a child with a disability.
Participants were 98 parents of children/youth with a physical disability. Parents reported on child's level of physical disability, the impact of the disability on the family (financial, social, personal strain and mastery) and their general health. Data were analysed to examine how different biopsychosocial factors are associated with raising a child with a physical disability.
Parents reported that child's disability had a higher social impact, compared with the financial and personal burden, as well as compared with their sense of competency and mastery. Child's level of disability was associated with financial burden, whereas parental emotional distress was associated with parents' personal and social burden, with the latter also associated with parent's religiosity. Total impact was associated with parental emotional distress and educational level.
Altogether, parental characteristics, but not child's characteristics, were associated with greater caregiver burden. Furthermore, the social impact a child's physical disability has on the family exceeded other sources of burden within the family. Providing parents social and emotional support, tailored to their unique biopsychosocial needs, may mitigate burden and distress, and increase sense of competency among families of children with a physical disability.
父母报告了抚养身体有残疾的孩子所带来的积极和消极经历。然而,不同的因素可能对孩子和家庭产生不同的影响。
本研究采用生物心理社会方法,扩展了关于抚养残疾儿童的总体影响的现有文献。
参与者为98名身体有残疾的儿童/青少年的父母。父母报告了孩子的身体残疾程度、残疾对家庭的影响(经济、社会、个人压力和掌控感)以及他们的总体健康状况。对数据进行分析,以研究不同的生物心理社会因素如何与抚养身体有残疾的孩子相关联。
父母报告称,与经济和个人负担相比,以及与他们的能力感和掌控感相比,孩子的残疾对社会的影响更大。孩子的残疾程度与经济负担相关,而父母的情绪困扰与父母的个人和社会负担相关,后者也与父母的宗教信仰相关。总体影响与父母的情绪困扰和教育水平相关。
总体而言,与孩子的特征相比,父母的特征与更大的照顾负担相关。此外,孩子身体残疾对家庭的社会影响超过了家庭内部的其他负担来源。根据父母独特的生物心理社会需求提供社会和情感支持,可能会减轻负担和困扰,并增强身体有残疾孩子家庭的能力感。