Themes Associated With Exercise Adherence in Persons With Parkinson's Disease: A Qualitative Study

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

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Tai Chi–Based Exercise for Older Adults with Parkinson’s Disease: A Pilot-Program Evaluation

Journal of Aging and Physical Activity ◽

10.1123/japa.15.2.139 ◽

2007 ◽

Vol 15 (2) ◽

pp. 139-151 ◽

Cited By ~ 45

Author(s):

Fuzhong Li ◽

Peter Harmer ◽

K. John Fisher ◽

Junheng Xu ◽

Kathleen Fitzgerald ◽

...

Keyword(s):

Older Adults ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Physical Performance ◽

Tai Chi ◽

Exercise Adherence ◽

Primary Objective ◽

Community Dwelling ◽

Preliminary Evaluation ◽

Exit Interviews

The primary objective of this study was to provide preliminary evaluation of the feasibility, safety, and efficacy of a newly developed Tai Chi-based exercise program for older adults with Parkinson’s disease (PD). Using a one-group pretest-posttest design, 17 community-dwelling adults (mean age 71.51 years) with mild to moderate idiopathic PD (Stage I, II, or III on the Hoehn and Yahr scale) and stable medication use completed a 5-day, 90-min/day Tai Chi exercise-evaluation program. Outcome measures included face-to-face exit interviews on appropriateness and safety and physical performance (i.e., 50-ft speed walk, up-and-go, functional reach). At the end of this brief intervention, exercise adherence was 100% and the program was shown to be safe. Exit interviews indicated that the program was well received by all participants with respect to program appropriateness, participant satisfaction and enjoyment, and intentions to continue. Furthermore, a significant pretest-to-posttest change was observed at the end of the 5-day program in all three physical-performance measures (p< .05). The results of this pilot evaluation suggest that Tai Chi is an appropriate physical activity for older adults with PD and might also be useful as a therapeutic exercise modality for improving and maintaining physical function. These preliminary findings warrant further investigation.

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Being in control of Parkinson’s disease: A qualitative study of community-dwelling patients’ coping with changes in care

European Journal of General Practice ◽

10.1080/13814788.2018.1447561 ◽

2018 ◽

Vol 24 (1) ◽

pp. 138-145 ◽

Cited By ~ 3

Author(s):

Annette O. A. Plouvier ◽

Tim C. Olde Hartman ◽

Anne van Litsenburg ◽

Bastiaan R. Bloem ◽

Chris van Weel ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Qualitative Study ◽

Community Dwelling

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A Qualitative Study on the Impact of First Steps—A Peer-led Educational Intervention for People Newly Diagnosed with Parkinson’s Disease

Behavioral Sciences ◽

10.3390/bs9100107 ◽

2019 ◽

Vol 9 (10) ◽

pp. 107 ◽

Cited By ~ 2

Author(s):

Andrew Soundy ◽

Johnny Collett ◽

Sophie Lawrie ◽

Shelly Coe ◽

Helen Roberts ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Qualitative Study ◽

Active Control ◽

Educational Intervention ◽

Intervention Group ◽

Control Group ◽

Newly Diagnosed ◽

Active Control Group ◽

The Impact

Aim: The dual aim of this research was to consider the impact of providing the First Steps program on the stories of people with Parkinson’s Disease (PD) and to investigate the psychosocial and emotional mechanisms which may explain this impact. Methods: A qualitative study using a subtle realist paradigm and hermeneutic phenomenological methodology was undertaken. A single semi-structured interview was used to consider the impact and experiences of people with PD who completed either the intervention (2-day peer-led behavior intervention using storytelling 6–8 weeks apart) or received telephone support calls as part of the active control group. Descriptive statistics and a narrative analysis were undertaken on the results. Results: Forty-two participants were invited to participate, forty of whom completed the interview. This included 18 from the intervention group and 22 from the active control group. The intervention group identified the value of the program as worth-while, demonstrating improved exercise behavior and coping mechanisms following the intervention. Three major stories (the affirmed, the validated and the transformed story) identified the impact of the intervention. Three internal mechanisms (perceived control, hope and action, and the individual’s mind set) alongside three social mechanisms (social comparison, social control and the first opportunity to share with peers) appeared to explain this impact. Conclusion: This study provides exciting and novel evidence of the impact of a peer-led psycho-educational intervention for people newly diagnosed with PD. Further research is needed to consider the impact of stories-based approaches on participants and consider a critical evaluation of the mechanisms which may explain changes in stories and self-reported behaviour.

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Challenges and strategies of medication adherence in Parkinson's disease: A qualitative study

Geriatric Nursing ◽

10.1016/j.gerinurse.2015.01.003 ◽

2015 ◽

Vol 36 (3) ◽

pp. 192-196 ◽

Cited By ~ 17

Author(s):

Ju Young Shin ◽

Barbara Habermann ◽

Ingrid Pretzer-Aboff

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Medication Adherence ◽

Qualitative Study ◽

Challenges And Strategies

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Exploring the uptake and implementation of tele-monitored home-exercise programmes in adults with Parkinson’s disease: A mixed-methods pilot study

Journal of Telemedicine and Telecare ◽

10.1177/1357633x18794315 ◽

2018 ◽

Vol 26 (1-2) ◽

pp. 53-63 ◽

Cited By ~ 3

Author(s):

Byron Lai ◽

Kristina Bond ◽

Yumi Kim ◽

Beth Barstow ◽

Emil Jovanov ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Exercise Training ◽

Vital Signs ◽

Exercise Adherence ◽

Moderate Intensity ◽

Home Exercise ◽

Exercise Participation ◽

Exercise Programmes ◽

Monitoring Technologies

Background People with Parkinson’s disease experience numerous barriers to exercise participation at fitness facilities. Advances in tele-monitoring technologies create alternative channels for managing and supervising exercise programmes in the home. However, the success of these programmes will depend on participants’ perceptions of using the technology and their exercise adherence. Thus, this pilot explored the uptake and implementation of two common methods of Internet-exercise training in Parkinson’s disease. Methods Twenty adults with Parkinson’s disease were randomized into either: telecoach-assisted exercise (TAE) or self-regulated exercise (SRE) groups. Both groups received the same eight-week exercise prescription (combined strength and aerobic exercise) and telehealth system that streamed and recorded vital signs and exercise data. TAE participants exercised under a telecoach’s supervision via videoconferencing. SRE participants independently managed their exercise training. Quantitative data were described and qualitative data underwent thematic analysis. Results Quantitative results demonstrated that TAE participants achieved strong attendance (99.2%), whereas SRE participants demonstrated 35.9% lower attendance, 48% less total time exercising, and 74.5% less time exercising at moderate intensity. Qualitatively, TAE participants reported overtly favourable programme experiences and that assistance from a telecoach enhanced their exercise motivation. SRE participants noted several challenges that impeded adherence. Conclusion Findings demonstrate that adults with Parkinson’s disease acknowledge benefits of exercising through a telehealth system and are open to utilizing this channel as a means of exercise. However, human-interactive support may be required to overcome unique impediments to participation. Study findings warrant validation in larger trials that can transfer the success of TAE towards more scalable methods of delivery.

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