The Lived Experience of Parents of Children With Disabilities as Service Users: A Transformative Learning Theory Perspective

The study sought to examine the content and processes that characterize the lived experiences of parents of children with disabilities as service users. The study employed a qualitative approach, utilizing the photovoice methodology to explore formative experiences derived from participants’ lived experiences. A total of 24 participants were interviewed; 19 were parents of children with autism and five were parents of children with other disabilities. The database was analyzed by content analysis. Four central themes were identified: (1) interactions with services and their representatives; (2) challenges embodied in the parents’ lived experiences as service users; (3) translation into action: expanding the parental role; and (4) policy changing. Research findings emphasize the fact that as the child’s primary caregiver, parents of children with disabilities should be treated as primary service users themselves. Services providing care and support for children with disabilities should consider parents’ lived experience-based knowledge when designing and planning services.