Strength in silence: the journey of mothers raising children with hydrocephalus.

Abstract

Background: Raising a child with hydrocephalus can be very challenging, especially in low- and middle-income countries. In Pakistan, mothers being the primary caregivers for their hydrocephalic children are under tremendous stress.

Methods: This study explores the challenges faced by Pakistani mothers raising children with hydrocephalus, employing a qualitative methodology through focus group discussions comprising ten mothers of hydrocephalic babies at Tertiary Care Hospital in Pakistan.

Results: The findings highlight three main themes: emotional toll, social isolation, and financial strain. Mothers experience significant emotional stress due to societal stigma and a lack of support, particularly from their husbands and family. Social isolation is prevalent, as mothers fear sharing their burdens and face physical confinement due to their children's needs. Financial strain is another major issue, with high medical costs adding to their economic difficulties.

Conclusion: The study emphasizes improved access to specialized care, awareness campaigns to reduce stigma, financial assistance, and stronger community support networks to support these mothers better. Addressing these unmet needs is crucial for empowering Pakistani mothers in their caregiving roles and improving the quality of life for their children with hydrocephalus.