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

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.

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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.

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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.

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Promoting Self-Care in Nursing Encounters with Persons Affected by Long-Term Conditions—A Proposed Model to Guide Clinical Care

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18052223 ◽

2021 ◽

Vol 18 (5) ◽

pp. 2223

Author(s):

Carina Hellqvist

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Clinical Care ◽

Self Care ◽

Self Management ◽

Unique Contribution ◽

Management Support ◽

Data Set ◽

Long Term Conditions

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.

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