Hearts of gold and hopeful hearts: lived experience of primary caregivers in taking care of individuals with dystonia

Background: Progressive and involuntary in nature, X-linked Dystonia Parkinsonism (XDP) causes a great impact on the quality of life of the individuals affected. With all these changes involved in XDP, it necessitates the critical participation and support of caregivers in managing and coping with the disease. Published studies about XDP are mainly concerned with the experiences of individuals living with the disease, while the caregiver’s perspective is given less attention. Objective: This study aimed to explore the lived experience of primary caregivers in taking care of individuals diagnosed with XDP in Panay. Methods: A phenomenological research design was used as the strategy of inquiry to provide rich and thick description of the participants lived experience about the phenomenon. A semi-structured, face-to-face, in-depth interview was used to gather data among five purposively chosen participants. Interview transcripts were analyzed and interpreted using the method inspired by Colaizzi. Credibility, dependability, confirm ability and transferability were adopted to maintain trustworthiness. Results: Six themes emerged: (1) overwhelming odds; (2) seal of care; (3) inescapable reality; (4) dancing under the storm; (5) finding one’s feet in; and (6) when hope springs. Conclusion: Primary caregivers of individuals with XDP are faced with increasing demands and challenges that are often overlooked. Understanding their experience is fundamental in designing interventions that highlights caring for the carers themselves.