Family Care giving in Duchenne Muscular Dystrophy: Is there a gender difference?

Abstract

Families of children with a Duchenne Muscular Dystrophy go through significant challenges in dealing with the condition. Few studies have examined the situations especially in the socio-cultural scenario that is unique to India, looking into the gender difference in the challenges. Hence, the aim of the present study was to identify the gender difference in psychosocial challenges in care giving for caregivers of children with Duchenne Muscular Dystrophy (DMD). A cross sectional descriptive study was performed among the caregivers of 60 children with DMD (All Males, Mean age 8.60; SD 1.76) who were attending the neuromuscular disorders clinic of a national tertiary referral center for Neurological disorders. All the children had a diagnosis of DMD confirmed either by genetic analysis or absence of dystrophin staining on muscle Immunohistochemistry. The caregivers included fathers (32), mothers (24) and other relatives (4), with mean age 35.20; SD 6.61.The knowledge and attitude, caregiver wellbeing, burden and coping patterns were assessed using structured interview schedule. The findings showed that while there was no significant difference among the parents of children with DMD on knowledge and attitude, significant differences were found in the experience of family burden and coping. The study concluded that caregivers of children with DMD are expected to benefit from psychosocial intervention to address their inadequate knowledge, attitude and burden, in keeping with the gender difference in caregiving, and to help them develop coping skills and meet their needs as well as their children's needs. Contact information of corresponding author: priyathomasat@gmail.com