A Qualitative Study Of Psychological Problems Among Parents Of Children With Cerebral Palsy In Pakistan

Abstract

Introduction: Cerebral palsy (CP) is a neurodevelopmental disorder that affects a child's movement and posture owing to brain injury. Raising children with CP presents unique challenges for parents, including increased caregiving demands, financial strain, and emotional distress. This qualitative study aimed to explore the psychological problems faced by parents of children with CP in Pakistan.

Methodology: A semi-structured interview approach was employed, involving 40 participants (primary caregivers) from five regions of Pakistan: Baluchistan, Khyber Pakhtunkhwa, Azad Jammu and Kashmir, Punjab, and Sindh. A thematic analysis was conducted on the interview data using NVivo 14.0.

Results: The analysis revealed several overarching themes: (1) psychological impact on parents (anxiety, depression, grief, anger, disappointment, lack of sleep, guilt); (2) daily caregiving challenges (feeding, mobility, toilet needs, behaviour managemen[1]t, safety monitoring); (3) effect on parental health and well-being (physical health deterioration, lack of self-care, sleep deprivation, and inability to work); and (4) concerns about the future (financial worries and uncertainty about future care). Participants reported significant emotional distress, social isolation, physical health issues, and financial strain. Of the participants, 65% were mothers, and 35% were fathers. A total of 97.5% were married, and 80% of the fathers were employed. Ninety% of mothers were housewives.

Conclusion: Parents of children with CP in Pakistan face significant psychological challenges that profoundly impact their well-being. Robust support systems, including increased awareness, improved access to healthcare services, support groups, and financial assistance are crucial for addressing the unique needs of these families. Further research is recommended to explore effective interventions tailored to Pakistan's cultural context.