“Every mother wants to bring her child home”: an interpretative phenomenological analysis of Romanian mothers experiences of caring for a child with disabilities at home.

Background: To ensure the right of the child with an intellectual disability to grow up in the family home is maintained, this study explores mothers ability to overcome the many challenges to the provision of care so as to guarantee a good quality of life for their child. Aims: This study will explore mothers experiences of the disclosure process of a disability and the impact it had on their ability to cope with providing care for their child. It asked mothers to describe their relationships in the family and community since the disclosure of their child’s disability. It explores how mothers made decisions regarding care, and what impact, if any, disability policies had on their lives. Method: In this exploratory qualitative study, eleven interviews were carried out with the assistance of a bilingual interpreter with mothers of children with disabilities who live at home, in the South of Romania. Of these, eight mothers’ interviews fulfilled the criteria of the study resulting in the transcription and analysis of these interviews using Interpretative Phenomenological Analysis. Results: The analysis uncovered four master themes of uncertainty, disempowering bureaucracy, a lack of understanding and the desire of mothers in going forward. Due to various socio- cultural barriers and ambivalent attitudes, mothers struggled to navigate the bureaucratic processes of meeting specialists. These encounters contributed to a lack of understanding by themselves and others, of their child. However, all mothers spoke of the desire in going forward with their child and thus continuing to provide care for them at home. Conclusions: This unique study reveals the strength of these mothers through their ability to cope with caring for their children in the face of a dearth of formal supports. The research has the potential to form the basis for change in the areas of clinical practice, policy, future education and research and continued professional development.