Huntington, the disease that transforms everything in its path: Narratives of family caregivers from the Colombian Caribbean coast

Abstract

Abstract Qualitative study to explore the transformations experienced at an emotional, physical, and social level by family caregivers of patients with Huntington’s disease on the Caribbean coast of Colombia. Participants were selected from the Factor H Foundation database, obtaining a theoretical saturation point with 10 life stories telling from the caregiver’s voice, gathered between August 2020 and May 2021. The driving question was refined by a panel of experts and was used with the consent of the participants. The main category, “Huntington, the disease that transforms everything in its path,” was divided into three subcategories: “Transforms my world,” “Transforms my heart and soul,” and “Transforms my body.” These subcategories unveiled that caregivers are mostly women who experienced losses in different aspects of their lives: educational, social, work, affective with strong impacts on their physical and emotional health, and, therefore, in their daily life. It is concluded that Huntington’s disease has adverse signals for the patient, their caregiver and the family; hence the need to focus collective efforts for its comprehensive approach.