Nazzal Mohammad S, Al-Rawajfah Omar M
a Department of Rehabilitation Sciences , Jordan University of Science and Technology , Irbid , Jordan.
b College of Nursing , Sultan Qaboos University , Muscat , Oman.
Disabil Rehabil. 2018 Nov;40(23):2723-2733. doi: 10.1080/09638288.2017.1354233. Epub 2017 Jul 18.
Caring for a child with a disability in the family is associated with a major increase in care-giving demands and burden. This qualitative study explores the perspectives, challenges and adaptations of Jordanian mothers living with a child with disability.
Phenomenological qualitative tradition was utilized. Seven Jordanian mothers of children with disability were purposefully selected as having rich experiences for caring for a child with a disability. In-depth interviews were conducted using a semi-structured guide, audio-taped and transcribed verbatim. Interpretive phenomenological analysis was used to extract main themes and subthemes.
Mothers' experiences were reflected into four main themes: (1) increased perceived stigma, (2) fear for the future, (3) increased perceived care-giving burden and (4) adaptations to the child's disability.
This study highlights key gaps in the provision of family-centered services for this population as well as multiple sociocultural issues impacting participation and quality of life. Healthcare professionals must deal with the child's disability from a family-centered and cultural perspective. Implications for rehabilitation When therapists meet the whole family's needs through a family-centered approach, the child with disability is less likely to be ignored, maltreated or abused. Family-centered practice adopts a sociocultural model which looks at the child from a wider point of view rather than just the disability itself. It requires therapists to review the context in which the child lives and address the specific needs of parents, siblings and other involved family members. Culture plays a huge role in shaping the family's perspective on disability and has a huge impact and implications for service delivery and development, quality of life and participation for children with disability and their families. Rehabilitation professionals must accommodate their time schedules to provide families with the communication, education, advocacy and consultations needed.
在家中照顾残疾儿童会使护理需求和负担大幅增加。本定性研究探讨了约旦残疾儿童母亲的观点、挑战及适应情况。
采用现象学定性研究传统。特意挑选了七位有丰富残疾儿童护理经验的约旦母亲。使用半结构化指南进行深入访谈，录音并逐字转录。采用解释性现象学分析提取主要主题和子主题。
母亲们的经历反映在四个主要主题中：（1）耻辱感增强，（2）对未来的恐惧，（3）护理负担加重，（4）对孩子残疾的适应。
本研究突出了为这一群体提供以家庭为中心服务方面的关键差距，以及影响参与和生活质量的多个社会文化问题。医疗保健专业人员必须从以家庭为中心和文化的角度处理儿童的残疾问题。对康复的启示当治疗师通过以家庭为中心的方法满足整个家庭的需求时，残疾儿童被忽视、虐待或侵害的可能性较小。以家庭为中心的实践采用社会文化模式，从更广泛的角度看待儿童，而不仅仅是残疾本身。这要求治疗师审视儿童生活的背景，满足父母、兄弟姐妹及其他相关家庭成员的特定需求。文化在塑造家庭对残疾的看法方面起着巨大作用，对残疾儿童及其家庭的服务提供与发展、生活质量和参与有着重大影响。康复专业人员必须调整他们的时间表，为家庭提供所需的沟通、教育、宣传和咨询服务。
