“It’s as if I’m the one suffering”: Narratives of Parents of Children with Disability in the Philippines

Abstract

Background. Children comprise a significant proportion of persons with disabilities (PWDs) in the Philippines, and represent a major public health challenge. One under-explored topic is the “lived experiences” of their parents and guardians as well as the roles they play in caring for their children. This qualitative study responds to this research gap by eliciting and foregrounding their experiences and narratives.

Methods. Six focus group discussions (FGDs) were conducted among parents of children with disabilities (CWDs) in Davao City and Tagum City. These were complemented by 12 key informant interviews among healthcare providers in both cities.

Results. For many parents, coming to terms with a disability is a difficult and lengthy process, but one that ends with a measure of relief and eventual adaptation. Living with disability, meanwhile, is fraught with medical, financial, educational, and social challenges. A positive religious outlook allows them to make sense of disability, helping them to overcome these challenges. Support groups and the health care system are likewise crucial factors towards family resilience.

Conclusion. Our findings show that the experience of disability is shared among family members, particularly, the parents of CWDs; thus, underscoring the need for a family-centered approach in policies, clinical care, and communications efforts involving children with disability in the Philippines.