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

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.

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

“…A total of 18 different programs were described in the 23 publications. All programs were organized in modular small group sessions (2–18 sessions) with peer PwPDs, 8 programs (35%) including caregivers [ 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 ]. An exception to modular small group sessions was a study that compared 12 weeks of small group sessions (EXCEED) with the same program studied independently at home after one introductory group session [ 29 ].…”

“…Both qualitative (3, 13%) [ 23 , 27 , 38 ] and (9, 39%) quantitative studies have been performed for evaluation of PD-related self-management programs [ 21 , 22 , 26 , 30 , 31 , 32 , 34 , 39 , 40 ]. Additionally, 8 (35%) studies combined quantitative data collection with qualitative descriptive aspects for program evaluation [ 24 , 28 , 29 , 36 , 41 , 42 , 43 , 44 ].…”

“…There were 3 qualitative studies, all with the purpose of formative evaluation [ 23 , 27 , 38 ]. 8 of the quantitative summative evaluation studies included additional formative elements [ 24 , 28 , 29 , 36 , 41 , 42 , 43 , 44 ], in addition to one quantitative study with a formative focus [ 42 ].…”

“…Given the fact that most studies were mono-central, small in study size and mostly carried out by the intervention teams themselves, they are not suited to assess effectiveness. However, the PEPP and its successors are those programmes in which the most independent evaluation studies were carried out, some of them by totally independent research teams in different countries [ 27 , 40 ], and one study explicitly targeted at assessing the reproducibility of effects after program transferal to clinical practice [ 28 ]. All these studies including the latter were able to reproduce some effect on the measured outcomes, so that this could be considered as evidence for general effectiveness of the PEPP and its off-springs.…”

“…After attending the NPS, PwPDs’ own perception of their health status was improved as well as their shift in approach to not letting the disease control life and their knowledge of strategies to handle symptoms [ 36 ]. The techniques of self-monitoring introduced in the NPS remained a strategy for PwPDs and care partners to explain and communicate health status in clinical encounters with the physician [ 27 ].…”