| Resum: |
Parkinson's disease (PD) is a progressive neurodegenerative disorder that manifests itself through motor and non-motor symptoms, which significantly influence quality of life. We aimed to explore the experiences of patients with PD and their caregivers before, during and after receiving treatment with neuromuscular electrostimulation (NMES), and to analyse how they perceive the changes experienced, especially in relation to swallowing and speech. A phenomenological qualitative study was conducted through 11 focus groups (FGs): 7 with patients and 4 with caregivers, held separately. Group sizes ranged from two to six participants. The decision to include small groups, including those with only two participants, was made to achieve theoretical saturation of the data. A manual inductive thematic analysis of discourse was performed, coding responses into emergent categories. The study sample consisted of 38 participants: 24 patients and 14 caregivers. The results fell into two broad categories: patient experience and carer experience. In terms of patients' experiences, the majority reported significant improvements in swallowing, salivation and, to a lesser extent, speech. Regarding caregivers, the improvements observed in patients were perceived as a relief in their daily caregiving responsibilities, facilitating meal preparation, enhancing communication, and providing greater reassurance in supporting the treatment process. This qualitative study provides valuable insights into NMES treatment in PD, showing improvements in areas such as swallowing, speech and saliva. By including the experiences of patients and carers, we identify critical aspects that impact on daily life that cannot be fully explored by other methods. The findings highlight the importance of a more holistic and individualised approach to treatment. It is suggested that future qualitative research should continue to explore these experiences with a view to improving rehabilitation strategies and health-related quality of life (HRQoL) for people with PD. This study is relevant because Parkinson's disease seriously affects people's daily lives, including aspects such as swallowing and speech. We wanted to better understand how patients felt after receiving neuromuscular electrostimulation (NMES) treatment, and their caregivers' perceptions of this treatment; this information could help with these difficulties. Thus, we conducted focus groups to explore the experiences and perceptions of patients with Parkinson's disease and their caregivers. Some patients noted that they were able to swallow better, to control and produce saliva more easily, and to take their medication more easily; however, most did not report improvements in speech. Caregivers, both formal and informal, also noted these improvements in patients. They were motivated to support continued treatment based on the positive changes they observed in the daily lives of the people for whom they provided care. In conclusion, this study suggests that, in the experience of the participants, NMES may have beneficial effects on some of the difficulties faced by people with Parkinson's disease in their daily lives. |
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identificació
(Universitat Autònoma de Barcelona. Departament de Medicina)
