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Hearts of Gold and Hopeful Hearts: Lived Experience of Primary Caregivers in Taking Care of Individuals with Dystonia

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dc.contributor.author Alinsangao, Mary Antoinette
dc.contributor.author Bagasbas, Pjeeco
dc.contributor.author Talaban, Walther
dc.contributor.author Oducado, Ryan Michael
dc.contributor.author Morga, Isabella Dianne
dc.contributor.author Respicio, Rachel Ann
dc.date.accessioned 2019-07-08T14:30:40Z
dc.date.available 2019-07-08T14:30:40Z
dc.date.issued 2018 en_US
dc.identifier.uri https://hdl.handle.net/10535/10551
dc.description.abstract "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. This study aimed to explore the lived experience of primary caregivers in taking care of individuals diagnosed with XDP in Panay. 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, confirmability 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. 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." en_US
dc.language English en_US
dc.subject phenomenology en_US
dc.subject caring en_US
dc.subject qualitative analysis en_US
dc.subject.classification nursing en_US
dc.title Hearts of Gold and Hopeful Hearts: Lived Experience of Primary Caregivers in Taking Care of Individuals with Dystonia en_US
dc.type Journal Article en_US
dc.type.published published en_US
dc.type.methodology Qualitative en_US
dc.coverage.country Philippines en_US
dc.subject.sector General & Multiple Resources en_US
dc.identifier.citationjournal International Journal of Current Research en_US
dc.identifier.citationvolume 10 en_US
dc.identifier.citationpages 70391-70396 en_US
dc.identifier.citationnumber 6 en_US
dc.identifier.citationmonth June en_US

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