Narratives of Mothers Caring for Children with Disabilities: A Study in Maternal and Child Health and Health Communication
Buch in deiner Nähe kaufen
Beschreibung
This book compiles the personal narratives of mothers raising children with severe, complex disabilities, highlighting the extreme disparity between their intensive caregiving efforts and society's frequent neglect of their emotional and structural needs. Through a close examination of ten individual maternal accounts including cases involving cerebral palsy, autism spectrum disorder, Down syndrome, fetal alcohol syndrome, type 1 diabetes, and Angelman syndrome, the authors document the immense psychological, financial, and physical tolls borne by primary caregivers. These stressors manifest as chronic burnout, marital strain, social isolation, and what literature defines as ambiguous loss and allostatic load, often exacerbated by a child’s behavioral instability or lack of affective reciprocity. Despite navigating systemic barriers, clinical dismissals, and an intricate administrative tangle of fragmented healthcare systems, the narrators demonstrate strong resilience, maternal agency, and unconditional positive regard. The book's cross-case synthesis integrates these empirical accounts with established theoretical models, framing caregiver burden as a critical public health and communication issue. The study calls for a metamorphic shift toward a family-centered care framework. It offers actionable recommendations for clinical practice, maternal and child health, and policy, including establishing integrated care coordination, providing specialized respite support, and standardizing universal medical coverage to prevent the poverty trap.
Autor*in
Cecilia Sem Obeng
Themen in »Narratives of Mothers Caring for Children with Disabilities: A Study in Maternal and Child Health and Health Communication«
Anthropology Disabilities Child Health Health Communication