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PURPOSE: The purpose of this study was to explore the lived experience of dancing with Parkinson's and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM). METHODS: Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observations. Arthur Frank's conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study's theoretical lens. Themes are both described and represented in images made by an RDM participant. FINDINGS: Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three "movements": escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness. CONCLUSIONS: The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body's contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience.
Assuntos
Esclerose Múltipla , Doença de Parkinson , Humanos , Livros , Comunicação , EmoçõesRESUMO
BACKGROUND: Community-based dance programs for people living with Parkinson's have grown in popularity over the past two decades. Studies investigating these programs have demonstrated multidimensional benefits in motor, non-motor, and quality of life related outcomes, yet there is a need to focus on the feasibility of larger trials. The primary objective of this study was to assess the feasibility and acceptability of conducting a trial investigating dance and Parkinson's in Northern Ireland. The secondary objectives were to conduct preliminary analyses of the classes' effects and to assess the appropriateness of outcome measures for a randomized controlled trial. METHODS: Participants were recruited through the community, Parkinson's UK, and university contacts to participate in a 12-week dance intervention inspired by the Dance for PD® model. Pre- and post-intervention, participants completed the following outcomes: MDS-UPDRS III, TUG, DT-TUG, Sensory Organization Test, MoCA, Trail Making Tests A&B, Digit Symbol Substitution Test, Digit Span, PDQ-39, FOG-Q, PHQ-9, FES-I, and an exit questionnaire (post-test only). Data were analyzed using paired samples t tests or Wilcoxon signed ranked test. RESULTS: Ten people living with Parkinson's participated. Running a larger trial was deemed infeasible in this setting due to recruitment issues; conversely, the dance intervention was accepted by participants with all but one completing the study. Functional mobility (TUG), symptoms of depression (PHQ-9), and bodily discomfort showed improvement. All other outcomes did not. The exit questionnaire revealed that the social aspect of classes was important, and improvements in mood or mental state were cited most frequently as perceived benefits. Outcome measures were feasible, with some changes suggested for future trials. CONCLUSIONS: This study highlighted the infeasibility of running a larger trial using this design in this setting despite demonstrating the acceptability of implementing a dance program in Northern Ireland for people living with Parkinson's. The results support existing evidence demonstrating that dance may improve functional mobility and symptoms of depression in people living with Parkinson's, though the study design and small sample size prevent the generalizability of results. The findings also support the idea that dancing has the potential to support several aspects of physical, emotional, mental, and social health.
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Dance may help individuals living with Parkinson's disease (PD) improve motor and non-motor symptoms that impact quality of life (QOL). The primary aim of this systematic review of randomized controlled trials (RCTs) was to evaluate the efficacy of dance in improving motor and non-motor symptoms of PD and QOL. The secondary aims of this review were to evaluate the methodological quality of included studies by assessing risk of bias across nine categories and to inform the direction of future research. Peer-reviewed RCTs that included people living with PD at all disease stages and ages and measured the effects of a dance intervention longer than one day were included. Sixteen RCTs involving 636 participants with mild to moderate PD were eligible for inclusion in the qualitative synthesis and nine in the meta-analysis. Overall, the reviewed evidence demonstrated that dance can improve motor impairments, specifically balance and motor symptom severity in individuals with mild to moderate PD, and that more research is needed to determine its effects on non-motor symptoms and QOL. RCTs that use a mixed-methods approach and include larger sample sizes will be beneficial in fully characterizing effects and in determining which program elements are most important in bringing about positive, clinically meaningful changes in people with PD.