Devi Ambica, Baig Lubna Ansari, Musharaf Mehjabeen, Tariq Hira
Dr. Ambica Devi, MSPH. World Health Organization, Quetta, Pakistan.
Prof. Lubna Ansari Baig, FCPS, PhD. University of Lahore, Karachi, Pakistan.
Pak J Med Sci. 2025 Mar;41(3):856-860. doi: 10.12669/pjms.41.3.9710.
BACKGROUND & OBJECTIVE: Down's syndrome, a chromosomal disorder, with an incidence of approximately one in 800 live births globally affects physical and intellectual development of a child, having greatest impact on mothers. This study explored the challenges faced by the mothers of children with Down's Syndrome related to their upbringing at different stages of life.
Qualitative research was conducted using Phenomenological approach from May 2021- April 2022 in Quetta, Baluchistan. Mothers were selected through purposive sampling from institutional records of Wilderness School, Quetta, the only private school for special children. Five In depth Interviews and two Focus Group Discussions were conducted with 17 mothers using a semi structured interview guide. Data collected in audio files was transcribed verbatim into English language. Analysis was done by two researchers independently.
The themes included, Experience of Giving birth to a child with Down's Syndrome, Social support system, Personal Challenges, Experiencing Worrisome thoughts about child's future and Experiencing personality changes. The findings imply that giving birth and bringing up a child with DS is a life-changing process. Social stigmatization, lack of support by family, in-laws, relatives and financial constraints to afford schooling and rehabilitation make it challenging for mothers to provide adequate attention and developmental opportunities to the child. Mothers compromise on their health, career, social life, social status and relationship with other family members.
Raising children with Down syndrome is a life changing process and the absence of prenatal diagnosis in regions like Quetta and limited counseling from concerned doctors leaves mothers unprepared. This results in care givers reliance on internet resources for developing understanding about the syndrome and child care.
唐氏综合征是一种染色体疾病，全球活产儿发病率约为八百分之一，会影响儿童的身体和智力发育，对母亲的影响最大。本研究探讨了唐氏综合征患儿母亲在孩子成长不同阶段所面临的与养育相关的挑战。
2021年5月至2022年4月在俾路支省奎达采用现象学方法进行了定性研究。通过目的抽样从奎达荒野学校（当地唯一一所特殊儿童私立学校）的机构记录中选取母亲。使用半结构化访谈指南对17位母亲进行了五次深度访谈和两次焦点小组讨论。音频文件中收集的数据逐字转录成英文。由两名研究人员独立进行分析。
主题包括：生育唐氏综合征患儿的经历、社会支持系统、个人挑战、对孩子未来的担忧以及经历性格变化。研究结果表明，生育和抚养唐氏综合征患儿是一个改变生活的过程。社会歧视、家人、姻亲、亲属缺乏支持以及承担教育和康复费用的经济限制，使得母亲难以给予孩子足够的关注和发展机会。母亲们在自身健康、职业、社交生活、社会地位以及与其他家庭成员的关系方面做出了妥协。
抚养唐氏综合征患儿是一个改变生活的过程，在奎达这样的地区缺乏产前诊断以及相关医生的咨询有限，使得母亲们毫无准备。这导致照顾者依赖网络资源来了解该综合征和儿童护理。
