Engagement in exercise for people with Parkinson’s: What is meaningful?

Abstract

Whilst it is suggested that exercise is integral in the management of Parkinson’s, there is minimal literature exploring this population’s perceptions about exercise, and how these perceptions relate to standardised physical outcome measures. This mixed method study explored participants’ views on an exercise programme which was offered as part of an intervention in a randomised controlled trial for people with Parkinson’s. Participants in the intervention group (n = 21) received an exercise programme and a cognitive enrichment programme while the control group (n = 20) continued with usual care. Semi-structured, face to face, audio-recorded individual or group interviews were undertaken with the intervention group and data analysed thematically. Quantitative data extracted from the clinical trial included the 6 Minute Walk Test and the mini-Balance Evaluation Systems Test (mini-BESTest). The themes: ‘Having trust in professional guidance’, and ‘An understanding and supportive environment’ contributed to the overarching theme of ‘A sense of individual empowerment’. Together the themes demonstrated meaningful holistic benefits gained by participants, which differed from the non-statistically significant quantitative results from the clinical trial. Small group tailored exercise effectively addressed multiple cornerstones of health in people with Parkinson’s, creating an overall sense of individual empowerment. This study also suggests that research may overemphasise reporting of standardised physical outcomes to the detriment of what participants perceive as meaningful outcomes.

The perspectives of patients with Parkinson's Disease: A qualitative systematic review

“…The thirteen included studies were published from 2004 to 2021, with one study from 2004 [20] and the remaining twelve studies from 2014 to 2021. There were four studies from the US, [21][22][23][24] two each from the UK, [25,26] Australia [27,28] and the Netherlands, [29,30] and one from each of Sweden, [20] New Zealand, [31] and Canada. [32] Most of the studies reported a specific purpose -e.g., how patients view the role of their GP, [29] or patients' perceptions of a specific exercise [22,27,31] or prevention program, [21] or of their perioperative experiences.…”

“…There were four studies from the US, [21][22][23][24] two each from the UK, [25,26] Australia [27,28] and the Netherlands, [29,30] and one from each of Sweden, [20] New Zealand, [31] and Canada. [32] Most of the studies reported a specific purpose -e.g., how patients view the role of their GP, [29] or patients' perceptions of a specific exercise [22,27,31] or prevention program, [21] or of their perioperative experiences. [23] All studies applied a qualitative design with interview data; one study supplemented this with video recordings [29] and one study applied a mixed-methods design.…”

The Perspectives of Patients with Parkinson's Disease: A Systematic Review and Thematic Synthesis

“…Most of the studies reported a speci c purpose -e.g., how patients view the role of their GP (26), or patients' perceptions of a speci c exercise (20,24,27) or prevention program (19), or of their perioperative experiences (21).…”

“…The ten included studies were published from 2004 to 2020, with one study from 2004 (18) and the remaining nine studies from 2014 to 2020. There were three studies from the US (19)(20)(21), two each from the UK (22,23) and Australia (24,25) and one from each of Sweden (18) the Netherlands (26) and New Zealand (27).…”