Self-management in long term conditions using smartphones: A pilot study in Parkinson’s disease

Background: Nursing interventions for persons affected by long-term conditions should focus on providing support to enhance the ability to manage disease in everyday life. Many clinical nurses feel they have inadequate training or experience to provide self-management support in a beneficial and structured way. This study explores the process towards independent self-care and management of disease in persons affected by Parkinson’s disease and the support required from healthcare to achieve this. It presents a nursing model to guide nurses in providing self-management support in the clinical care encounter. Methods: The results from three previously published articles investigating a self-management support program for persons with Parkinson’s disease were combined to form a new data set, and analyzed using qualitative thematic analysis. Results: Three separate, but interrelated, themes were identified, which described the process towards self-management of disease as expressed by the participants of the self-management program. Themes describe the factors important for developing and improving self-management abilities and actions. The results were applied to Orem’s Self-care deficit theory to suggest a model of self-management support in the clinical nursing encounter. Conclusion: This study investigated factors important for self-management and highlighted the unique contribution and focus of nursing support to promote independent self-care.

Download Full-text

Structured Care and Self-Management Education for Persons with Parkinson’s Disease: Why the First Does Not Go without the Second—Systematic Review, Experiences and Implementation Concepts from Sweden and Germany

Journal of Clinical Medicine ◽

10.3390/jcm9092787 ◽

2020 ◽

Vol 9 (9) ◽

pp. 2787 ◽

Cited By ~ 1

Author(s):

Jenny Tennigkeit ◽

Tim Feige ◽

Maria Haak ◽

Carina Hellqvist ◽

Ümran S. Seven ◽

...

Keyword(s):

Systematic Review ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Integrated Care ◽

Management Education ◽

Self Management ◽

Education Programs ◽

Long Term Conditions ◽

Structured Care

Integrated care is regarded as a key for care delivery to persons with chronic long-term conditions such as Parkinson’s disease. For persons with Parkinson’s disease, obtaining self-management support is a top priority in the context of integrated care. Self-management is regarded as a crucial competence in chronic diseases since the affected persons and their caregivers inevitably take up the main responsibility when it comes to day-to-day management. Formal self-management education programs with the focus on behavioral skills relevant to the induction and maintenance of behavioral change have been implemented as a standard in many chronic long-term conditions. However, besides the example of the Swedish National Parkinson School, the offers for persons with Parkinson’s disease remain fragmented and limited in availability. Today, no such program is implemented as a nationwide standard in Germany. This paper provides (1) a systematic review on structured self-management education programs specifically designed or adopted for persons with Parkinson’s disease, (2) presents the Swedish National Parkinson School as an example for a successfully implemented nationwide program and (3) presents a concept for the design, evaluation and long-term implementation of a future-orientated self-management education program for persons with Parkinson’s disease in Germany.

Download Full-text

Deep brain stimulation in Parkinson's disease: A multicentric, long-term, observational pilot study

Journal of the Neurological Sciences ◽

10.1016/j.jns.2019.07.029 ◽

2019 ◽

Vol 405 ◽

pp. 116411 ◽

Cited By ~ 3

Author(s):

Emma Scelzo ◽

Ettore Beghi ◽

Manuela Rosa ◽

Serena Angrisano ◽

Angelo Antonini ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Deep Brain Stimulation ◽

Pilot Study ◽

Brain Stimulation ◽

Deep Brain

Download Full-text

Benefits of a Self-Management Program for the Couple Living With Parkinson’s Disease: A Pilot Study

Journal of Applied Gerontology ◽

10.1177/0733464820918136 ◽

2020 ◽

pp. 073346482091813 ◽

Cited By ~ 2

Author(s):

Karen S. Lyons ◽

Alex Zajack ◽

Melissa Greer ◽

Holly Chaimov ◽

Nathan F. Dieckmann ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Pilot Study ◽

Intervention Group ◽

Management Program ◽

Self Management ◽

Relaxation Techniques ◽

Community Based ◽

Aerobic Activity ◽

Mental Relaxation

The goal of this pilot study was to explore health benefits for couples participating together in an existing community-based self-management workshop for Parkinson’s disease (PD). A quasi-experimental two-wave design explored the effects of the Strive to Thrive program in comparison to a wait-list control condition. Preliminary data ( n = 39 couples) showed that spouses in the intervention group had greater engagement in mental relaxation techniques at 7 weeks than those in the control condition (large effect size). Small effects were observed for increases in aerobic activity and mental relaxation for the adult with PD, increases in strength-based activities and self-efficacy for spouses, declines in depressive symptoms for spouses, and decreases in protective buffering for both adults with PD and spouses. The program showed potential for existing community-based programs to benefit couples living with chronic illness.

Download Full-text

The use of mobile health technology for Parkinson's disease self-management: a Systematic Review (Preprint)

10.2196/preprints.16909 ◽

2019 ◽

Author(s):

Sylvie Grosjean ◽

Eliza Bate ◽

Tiago Mestre

Keyword(s):

Systematic Review ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Mobile Health ◽

Self Management ◽

Social Acceptability ◽

Qualitative Systematic Review ◽

The Social ◽

Mhealth Technology

BACKGROUND The use of mobile health (mHealth) technology for Parkinson’s disease management has developed quickly in recent years. Research in this area often focuses on evaluation of the technology in terms of accuracy and reliability. The social dimension and patient perspectives have not been systematically evaluated and are vital considerations in terms of acceptability and long-term use of novel mHealth technologies. OBJECTIVE This qualitative systematic review aims to investigate the barriers to and facilitators of using mHealth technologies for disease self-management from the perspective of People with Parkinson's disease. METHODS MedLine, Embase, PsychInfo, Scopus and CINAHL databases were searched using specific key words, and published peer-reviewed articles from 2008 to 2018 were scanned for inclusion criteria. RESULTS A total of 10 articles were included in this qualitative systematic review. The articles highlight the social and technical factors including: usability, social acceptability, perceived benefits to treatment and quality of life that have the potential to impact mHealth technology use from the perspective of People with Parkinson's disease. CONCLUSIONS The results of this systematic review suggest that it is important to strongly consider social dimensions in the design of mHealth technologies for People with Parkinson's in order to improve their social acceptability, a key feature of mHealth. We suggest that a co-design approach could contribute to the design and development of mHealth technologies that are more socially acceptable to People with Parkinson's, and enable their successful long term use in the context of daily life.

Download Full-text

Designing socially acceptable mHealth technologies for Parkinson's disease self-management

Finnish Journal of eHealth and eWelfare ◽

10.23996/fjhw.95231 ◽

2020 ◽

Vol 12 (3) ◽

pp. 163-178

Author(s):

Sylvie Grosjean ◽

Eliza Bate ◽

Tiago Mestre

Keyword(s):

Systematic Review ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Disease Management ◽

Social Factors ◽

Daily Life ◽

Self Management ◽

Financial Factors ◽

Qualitative Systematic Review

Mobile health (mHealth) technologies for Parkinson’s disease management have developed quickly in recent years. Research in this area typically focuses on evaluation of the accuracy and reliability of the technology, often to the exclusion of social factors and patient perspectives. This qualitative systematic review aimed to investigate the barriers to and facilitators of use mHealth technologies for disease self-management from the perspective of People with Parkinson's (PwP). Findings revealed that technological, as well as social, and financial factors are key considerations for mHealth design, to ensure its acceptability, and long-term use by PwP. This study proposes that a co-design approach could contribute to the design and development of mHealth that are socially acceptable to PwP, and enable their successful long-term use in the context of daily life.

Download Full-text

Short- and long-term effects of tactile massage on salivary cortisol concentrations in Parkinson’s disease: a randomised controlled pilot study

BMC Complementary and Alternative Medicine ◽

10.1186/1472-6882-13-357 ◽

2013 ◽

Vol 13 (1) ◽

Cited By ~ 14

Author(s):

Carl-Johan Törnhage ◽

Örjan Skogar ◽

Astrid Borg ◽

Birgitta Larsson ◽

Laila Robertsson ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Pilot Study ◽

Salivary Cortisol ◽

Long Term Effects ◽

Short And Long Term ◽

Randomised Controlled

Download Full-text

Impaired circadian heart rate variability in Parkinson’s disease: a time-domain analysis in ambulatory setting

10.21203/rs.2.16372/v4 ◽

2020 ◽

Author(s):

Valentina Arnao ◽

Antonio Cinturino ◽

Sergio Mastrilli ◽

Carmelo Buttà ◽

Carlo Maida ◽

...

Keyword(s):

Parkinson’S Disease ◽

Heart Rate ◽

Parkinson's Disease ◽

Heart Rate Variability ◽

Pilot Study ◽

Time Domain ◽

Time Domain Analysis ◽

Domain Analysis ◽

Healthy Individuals

Abstract Background Heart rate variability (HRV) decreases in Parkinson’s disease (PD) and it can be considered a marker for cardiovascular dysautonomia. The purpose of this pilot study is to evaluate long-term time-domain analysis of HRV of PD patients and compare the results with those of matched healthy individuals. Methods Idiopathic PD patients without comorbidity impairing HRV, and age-matched healthy individuals were recruited in a pilot study. A long-term time domain analysis of HRV using 24-hour ambulatory ECG was performed. Results Overall, 18 PD patients fulfilling inclusion criteria completed the evaluation (mean age was 55.6±8.8, disease duration: 5.0±4.7). Mean SCOPA-AUT score was 10.1±7.3. Patients were on Hoehn & Yahr stage 1-2 and mean Levodopa Equivalent Dose (LED) was 311±239.9. Mean of the 5-minute standard deviation (SD) of R-R intervals distribution (SDNN) for all 5 min segments of the entire recording (ISDNN) was significantly lower in patients compared to controls. ISDNN was significantly different between Parkinson’s disease patients and healthy controls. Conclusions In our population characterized by mild to moderate disease severity, time-domain assessment of HRV seemed to be a potential tool to characterize cardiovascular dysautonomia. Decrease of ISDNN in PD may reflect an autonomic derangement extending all day and night long.

Download Full-text