Care, illness and lived experience: child development and maternal burden in a context of vulnerability

Abstract

Neuromuscular disorders in early childhood generate continuous care needs, which implies a profound reorganization of life, especially of the main caregiver. In contexts of social vulnerability, this burden is intensified by the scarcity of support networks and structural barriers in the health system. The aim of this research was to understand the caregiving experience of a mother of a child with neuromuscular disease, analyzing how physical, emotional and functional demands, as well as sociopolitical and economic conditions influence child development, caregiver overload and possibilities of adaptation to the context. A unique case study was developed with a phenomenological-hermeneutical qualitative approach, supported by a quantitative descriptive pretest-posttest component without intervention. The Zarit, PHQ-9, GAD-7 and PedsQL™ scales were applied, in addition to an in-depth interview and collection of narratives for six weeks. The results show sustained mild overload, an increase in mild depressive and anxious symptoms, and affected quality of life, in parallel with an adaptive process marked by the absence of support networks and exclusive responsibility for care. The narratives reveal care as the axis of identity, continuous bodily effort and affective bond as vital support. It is concluded that child development depends directly on the well-being of the caregiver, so state support, community support and the health system must prioritize the care of the caregiver, guaranteeing psychosocial accompaniment, support networks and sustained socioeconomic protection measures.