Mothers’ Experiences of Providing Complex Home-Based Care for Children with Profound Intellectual and Multiple Disabilities: A Phenomenological Study

Abstract

Background:The care of children with Profound Intellectual and Multiple Disabilities (PIMD) often relies heavily on parents, and their care practices can be difficult for professionals to fully understand or replicate. Purpose: This study aims to clarify the foundation of care practices among parents of children with PIMD. Methods: Five mothers were interviewed using unstructured interviews, and the data were analyzed using a phenomenological approach. Conclusions: Mothers emphasized the importance of fostering children's sense of self-determination through sincere and attentive care. They also expressed concerns that nurses’ excessive focus on medical expertise could lead to losing sight of the child as a person and reducing care to the application of knowledge. This study highlights the lack of a universal definition of care for children with PIMD. Implications for Practice: Nurses need to take more account of the fact that care for children with PIMD is deeply personalized, and that based on mothers’ experiences, care itself constitutes an important form of tacit knowledge. These insights should be applied to everyday practice and emphasized in the training process.