Effects of self-management education for persons with Parkinson's disease and their care partners: A qualitative observational study in clinical care.

Carina Hellqvist,Carina Berterö,Nil Dizdar,Märta Sund‐Levander,Peter Hagell

doi:10.1111/nhs.12721

Carina Hellqvist, Carina Berterö + Show 3 more

Open Access

https://doi.org/10.1111/nhs.12721

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Abstract

Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.

Highlights

Parkinson's disease (PD) is a neurodegenerative disorder affecting about 1% of the population over 60 years old
With the basis in this personal narrative physician, Persons with PD (PwPD) and care partners collaborated during the visit to find a common understanding of the situation
The results suggest that teaching selfmonitoring to PwPD and their care partners helps them with handling the symptoms of disease

Summary

Introduction

Parkinson's disease (PD) is a neurodegenerative disorder affecting about 1% of the population over 60 years old. PD generates nonmotor symptoms, that is, depression, anxiety, cognitive impairment, constipation, pain, sleep disturbances, and orthostatic hypotension (Schapira et al, 2017). These symptoms have a negative impact on the quality of life for PwPD and cause strain to their family (Kadastik-Eerme, Rosenthal, Muldmaa, & Taba, 2015; Mosely, Moodie, & Dissanayaka, 2017). PwPD need regular health care visits, including evaluation of symptoms and adjustment of medical treatment the majority of care and management of disease is performed by the person themselves and their family in in everyday life (Baudet et al, 2015; Lageman, Mickens, & Cash, 2015). PwPD and their care partners want help and support from health care in order to develop emotional, cognitive, and practical skills to handle everyday life and maintain life satisfaction (Berger et al, 2017; Sturm, Folkerts, & Kalbe, 2019; Vlaanderen et al, 2019)

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