Abstract
Identifying and addressing daily challenges and resources associated with chronic oropharyngeal dysphagia (OD) is a pivotal, though still neglected component of person-centred care, yet overlooked in research studies. To investigate these dimensions, 25 Italian adults with chronic OD due to cancer or neurodegenerative diseases participated in semi-structured interviews, designed following a modified framework analysis approach. Two researchers independently transcribed and coded interviews, elaborated a working analytical framework, indexed and charted the data, solving discrepancies through negotiated agreement and discussion with a third researcher. Proportion agreement on extracted quotations was calculated. Overall, 457 quotations were extracted from the interviews (88% agreement). Daily challenges pertained to physical, practical, and social domains; most participants reported OD-related problems; almost half mentioned care needs and obstacles in using healthcare services. Concerning resources in OD management, most participants referred to problem-focused and meaning-focused coping strategies, personal capabilities, and support from family and healthcare services. Finally, almost half of the participants reported OD-related changes in life view and meaning. Findings suggest that adjusting to OD implies challenges and resource mobilization in different life domains. Future studies should longitudinally elucidate the dynamics of positive adjustment, to promote patient-centred OD care based on individually perceived needs and challenges, and to inform healthcare policies.
Published Version
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