Experiences of Mothers in Romania after Hearing from Medical Professionals That Their Child Has a Disability

In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 13, Heft 1, S. 4-14

Abstract

AbstractTo help maintain the right of children with an intellectual disability to grow up in their family home, this study explored Romanian mothers' experiences of overcoming the many challenges to the provision of care to assure a high quality of life for their child. Studied were mothers' experiences upon being told by a professional that their child had a disability and of their experiences of caring for their children at home in the context of Romanian disability legislation and contact with local Disability Commissions. The data, obtained via an exploratory qualitative study, were based upon eight interviews with mothers of children with disabilities carried out with the assistance of a bilingual interpreter. Interviews were transcribed and analyzed using Interpretative Phenomenological Analysis. Two themes of "uncertainty" and "disempowering bureaucracy" were parsed from mothers' various experiences. Due to various sociocultural barriers and unclear communication, mothers experienced uncertainty surrounding the diagnosis of their child's condition. In light of this uncertainty and the ambivalent attitudes of professionals, mothers experienced disempowering bureaucracy while striving to meet the annual requirements of their local Disability Commission. The study revealed gaps in the disclosure process of an intellectual disability that lead to uncertainty among the mothers toward professionals. The disempowering bureaucracy connected to the local Disability Commission impeded mothers access to community support and contributed toward a lack of understanding of the needs of their child.