Mindfulness-based lifestyle programs for the self-management of Parkinson’s disease in Australia

2018 ◽  
Vol 34 (4) ◽  
pp. 668-676 ◽  
Author(s):  
Brooke E Vandenberg ◽  
Jenny Advocat ◽  
Craig Hassed ◽  
Jennifer Hester ◽  
Joanne Enticott ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Controlled Trial ◽  
Mindfulness Training ◽  
The Self ◽  
Self Management ◽  
Structured Interviews ◽  
Lifestyle Program ◽  
Patient Reported ◽  
The Impact

Abstract Despite emerging evidence suggesting positive outcomes of mindfulness training for the self-management of other neurodegenerative diseases, limited research has explored its effect on the self-management of Parkinson’s disease (PD). We aimed to characterize the experiences of individuals participating in a facilitated, group mindfulness-based lifestyle program for community living adults with Stage 2 PD and explore how the program influenced beliefs about self-management of their disease. Our longitudinal qualitative study was embedded within a randomized controlled trial exploring the impact of a 6-week mindfulness-based lifestyle program on patient-reported function. The study was set in Melbourne, Australia in 2012–2013. We conducted semi-structured interviews with participants before, immediately after, and 6 months following participation in the program. Sixteen participants were interviewed prior to commencing the program. Of these, 12 were interviewed shortly after its conclusion, and 9 interviewed at 6 months. Prior to the program, participants felt a lack of control over their illness. A desire for control and a need for alternative tools for managing the progression of PD motivated many to engage with the program. Following the program, where participants experienced an increase in mindfulness, many became more accepting of disease progression and reported improved social relationships and self-confidence in managing their disease. Mindfulness-based lifestyle programs have the potential for increasing both participants’ sense of control over their reactions to disease symptoms as well as social connectedness. Community-based mindfulness training may provide participants with tools for self-managing a number of the consequences of Stage 2 PD.

Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: A Randomized Controlled Trial (Preprint)

2021 ◽  
Author(s):  
Lindy Paulina Johanna Arts ◽  
Simone Oerlemans ◽  
Jacobien M Kieffer ◽  
Judith Prins ◽  
Mels Hoogendoorn ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Breast Cancer Survivors ◽  
Controlled Trial ◽  
Patient Reported Outcome ◽  
The Self ◽  
Self Management ◽  
Web Based ◽  
Management Intervention ◽  
Patient Reported ◽  
The Impact

BACKGROUND There has been a cultural shift toward patient engagement in health with a growing demand from patients to access their results. OBJECTIVE The Lymphoma InterVEntion [LIVE] trial was conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, and satisfaction with information in a population-based setting. METHODS Return of PRO results included comparison with age- and sex-matched peers and was built into the PROFILES registry. The self-management intervention is an adaptation of an fully-automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to 1) care as usual (CAU), 2) return of PRO results, and 3) return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), after 4 months (T1; n=190), and after 12 months (T2; n=170). RESULTS Of all invited patients, 25% (227/892) were randomly assigned to CAU (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 77% (115/150) of those with access. No significant differences were observed for psychological distress, self-management, satisfaction with information provision, and healthcare use between patients who received their PRO results and those who did not (P>.05). Usage of the self-management intervention was low (3%; 2/76) and an effect could therefore not be determined. CONCLUSIONS Return of individual PRO results seems to meet patients’ wishes, but had no beneficial effects on patient outcome. Also, no negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can be safely implemented in daily clinical practice. CLINICALTRIAL Netherlands Trial Register NTR5953 INTERNATIONAL REGISTERED REPORT RR2-10.1186/s13063-017-1943-2

scholarly journals A randomized controlled trial of patient‐reported outcomes with tai chi exercise in Parkinson's disease

2013 ◽  
Vol 29 (4) ◽  
pp. 539-545 ◽  
Author(s):  
Fuzhong Li ◽  
Peter Harmer ◽  
Yu Liu ◽  
Elizabeth Eckstrom ◽  
Kathleen Fitzgerald ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Randomized Controlled Trial ◽  
Patient Reported Outcomes ◽  
Tai Chi ◽  
Controlled Trial ◽  
Randomized Controlled ◽  
Patient Reported ◽  
Tai Chi Exercise

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

2020 ◽  
Vol 30 (14) ◽  
pp. 2217-2233 ◽  
Author(s):  
Cassandra J. Thomson ◽  
Rebecca A. Segrave ◽  
Eric Racine ◽  
Narelle Warren ◽  
Dominic Thyagarajan ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Brain Stimulation ◽  
Personality Change ◽  
Structured Interviews ◽  
Personality Changes ◽  
The Impact ◽  
Related Personality ◽  
Deep Brain

Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

scholarly journals Perceptions of the Impact of Non-contact Boxing on Social and Community Engagement for Individuals with Parkinson’s Disease: A qualitative study

2020 ◽  
Author(s):  
Casey Humphrey ◽  
Dana Howell ◽  
Melba Custer
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Community Engagement ◽  
Subjective Experiences ◽  
Structured Interviews ◽  
Convenience Sample ◽  
The People ◽  
Colaizzi's Method ◽  
The Impact

Purpose: To explore the perceptions of individuals with Parkinson’s disease (PD) on their experiences within a community based, non-contact boxing program. Specifically, this study considered how these individuals perceived non-contact boxing to influence their social and community engagement and factors influencing ongoing participation in this program. Method: This was a phenomenological case study that utilized qualitative methods for data collection including semi-structured interviews and observation. Colaizzi’s method was used for data analysis. A convenience sample obtained from a boxing club that offered PD specific boxing classes was used. The sample included 10 participants (3 female, 7 male) ranging in age from 52 to 84 years. Participants typically attended a 75 minute boxing class two to three times per week. Results: The exhaustive description of the phenomenon was that individuals with PD have a strong desire to maintain the life they had prior to their diagnosis and chose activities, such as non-contact boxing, which supported their ability to sustain that lifestyle. Two themes were identified which included 1) “The people I’ve met here and spent time with will be friends forever” and 2) “I don’t have to be Muhammed Ali. It’s not about that.” Conclusions: This study provided a basic understanding of the subjective experiences of individuals with PD who participated in non-contact boxing. Findings demonstrated that non-contact boxing facilitates the growth of supportive relationship for individuals with PD. The study also found that individuals with PD believe non-contact boxing provided a variety of physical, cognitive, and emotional benefits which facilitated their ability to maintain participation in valued activities.

scholarly journals Getting personal: investigating how living with universal credit affects emotions and identities

2021 ◽  
Author(s):  
◽  
Sophia Constance Negus
Keyword(s):  
Labour Market ◽  
Analytical Framework ◽  
The Self ◽  
Self Management ◽  
Structured Interviews ◽  
Market Society ◽  
Working Age ◽  
Negative Impacts ◽  
The Impact

This thesis investigates the impacts of Universal Credit (UC) on emotions, wellbeing, identities, and the ‘self’. The findings are of growing importance as increasing numbers of people are receiving UC. Six million people now engage with a ‘violent’ system (Cooper and Whyte, 2017) which pushes people further from the labour market, society, health, and their ‘self’. UC introduced radical changes to British working-age social security, with aims to ‘simplify’ the system, reduce costs and fraud, and ‘make work pay’. Since launching in 2013, there has been growing evidence on the negative impacts of UC, yet, little is known about the impact UC has on emotions, wellbeing, identities, and the ‘self’, a gap in knowledge this thesis addresses. A geographically bound case-study was adopted using semi-structured interviews and participant-solicited diaries to investigate the diverse realities and impacts of UC. The analytical framework utilises several concepts and theories, drawing upon Elias (1994) as it is argued UC is a ‘civilising offensive’ (Powell, 2013), and Goffman (1997/2007) to explore the impacts on identities. This thesis provides empirical contributions to knowledge surrounding the extent and severity of the impacts of UC on emotions and the ‘self’. The research found that harm inflicted from UC carries serious consequences and the experiences indicate a systemic erosion of people, lives, and possibilities. The findings demonstrate how UC is experienced as dehumanizing and destabilising of emotions, wellbeing and the ‘self’. It provides important insights into how people respond to UC and the significant resources spent on ‘self-management’ as individuals attempt to preserve their identities which are under threat from institutional scrutiny, stigma and increasing poverty. Therefore, this thesis provides an important contribution to knowledge surrounding the corrosive nature of UC.

scholarly journals Nonpharmacologic Interventions for the Self-Management of Anxiety in Parkinson’s Disease: A Comprehensive Review

2019 ◽  
Vol 2019 ◽  
pp. 1-9 ◽  
Author(s):  
Susan K. Chandler ◽  
Jo Lynne Robins ◽  
Patricia A. Kinser
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Intervention Studies ◽  
Statistical Significance ◽  
Current Treatment ◽  
The Self ◽  
Common Element ◽  
Self Management ◽  
Comprehensive Review ◽  
Quasi Experimental

Anxiety in Parkinson’s disease (aPD) is underdiagnosed, undertreated, and understudied. As many as 50% of persons diagnosed with Parkinson’s disease (PD) are reported to suffer from anxiety. Current treatment is largely pharmacologic, which can result in a myriad of undesirable and unsafe side effects. The aim of this paper is to examine intervention studies of self-managed nonpharmacological strategies for the treatment of anxiety. A comprehensive review was conducted on experimental or quasi-experimental trials that included self-management approaches for the nonpharmacologic treatment of anxiety as a primary or secondary aim or outcome measure. Thirteen studies were identified from four databases. Study quality demonstrated variability in design and delivery of self-managed interventions; sample sizes were small; anxiety was most commonly a secondary aim; and the use of anxiety measures varied widely. Statistical significance was evident in slightly more than 50% of the anxiety intervention studies. A common element in the interventions in all studies was the focused use of breath. Further research is needed to determine the feasibility of using focused breathing, alone, as an intervention for the self-management of anxiety in Parkinson’s disease.

scholarly journals Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

2021 ◽  
Vol 12 ◽  
Author(s):  
Marjan J. Meinders ◽  
Giovanni Gentile ◽  
Anette E. Schrag ◽  
Spiros Konitsiotis ◽  
Carsten Eggers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Care Coordination ◽  
Controlled Trial ◽  
Symptom Burden ◽  
Advance Care ◽  
The Impact

Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings.Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing.Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings.Clinical Trial Registration:www.trialregister.nl, NL8180.

scholarly journals Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

2021 ◽  
Vol 18 (18) ◽  
pp. 9516
Author(s):  
Yolanda María Chacón Gámez ◽  
Florian Brugger ◽  
Nikola Biller-Andorno
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Side Effects ◽  
Family Caregivers ◽  
Brain Stimulation ◽  
Physical And Mental Health ◽  
Structured Interviews ◽  
The Impact ◽  
Deep Brain

Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.

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