„A PARENT’S JOURNEY WITH A CHILD WITH DISABILITY IS LIKE CLIMBING A MOUNTAIN.” A QUALITATIVE STUDY OF THE CHALLENGES EXPERIENCED BY MOTHERS OF CHILDREN WITH DISABILITIES FROM A HUMAN RIGHTS-BASED PERSPECTIVE
„A PARENT’S JOURNEY WITH A CHILD WITH DISABILITY IS LIKE CLIMBING A MOUNTAIN.” A QUALITATIVE STUDY OF THE CHALLENGES EXPERIENCED BY MOTHERS OF CHILDREN WITH DISABILITIES FROM A HUMAN RIGHTS-BASED PERSPECTIVE

Summary/Abstract: „A Parent’s Journey with a Child with Disability is Like Climbing a Mountain.” A Qualitative Study of the Challenges Experienced by Mothers of Children with Disabilities from a Human Rights-Based Perspective. Grounded in a human rights-based approach to disability, this qualitative study explores the lived experiences of 13 mothers raising children with disabilities in Timiș County, Western Romania. Using in-depth, semi-structured interviews, the research investigates the primary challenges mothers face and the role of spirituality as a resource for resilience. Thematic analysis revealed that despite formal guarantees of equality and inclusion, participants’ daily lives are marked by significant physical, systemic, and financial barriers. Physical challenges include inaccessible infrastructure, while systemic obstacles manifest as a bureaucratic maze, insufficient state-provided services, and a lack of professional guidance. Financially, families are burdened by exorbitant costs for therapies and equipment, often exceeding average incomes. In the face of these adversities, spirituality and religious practices emerge as a coping mechanism, providing a sense of emotional regulation, hope, and inner strength. These findings underscore a critical gap between policy and practice in the realization of disability rights and high light the vital role of personal resources, like spirituality, in navigating an unsupportive environment. This study argues for a collective commitment to dismantle existing barriers and ensure the full realization of rights for families of children with disabilities.

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