Whispers of Resilience: A phenomenological exploration of maternal journeys with children affected by Downs Syndrome in Quetta, Baluchistan.

Abstract

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.

Methods: 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.

Results: 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.

Conclusion: 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.