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

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.

Improving self-management for persons with Parkinson's disease through education focusing on management of daily life: Patients' and relatives' experience of the Swedish National Parkinson School.

AIMS AND OBJECTIVE: To identify and describe experiences valuable for managing daily life after participation in the NPS self-management intervention. The second part was to explore the applicability of the Self- and family management framework by Grey and colleagues for persons with Parkinson's Disease and their relatives. BACKGROUND: The impact of PD is evident on the lives of both patients and relatives. The National Parkinson School (NPS) is a Swedish self-management programme designed for patients and relatives, aiming at teaching strategies helpful for the ability of self-management, in order to promote life satisfaction. DESIGN: Qualitative explorative with inductive and deductive analysis. METHODS: Five group discussions with NPS participants were audio-recorded. Verbatim transcriptions were analysed inductively with thematic analysis according to Braun and Clarke, and the findings were then applied deductively to the existing model for patients with chronic disease. RESULTS: Through the first step of inductive analysis, three themes capturing the meaning, value and experience of being a participant at the NPS were identified: exchanging experiences and feeling support, adjustment and acceptance of PD for managing daily life and promoting life satisfaction. The deductive analysis applied the inductive findings to the Self- and family management framework of chronically ill to explore the fit to persons with PD and relatives attending the NPS programme. CONCLUSIONS: The NPS programme is a promising approach for helping persons with PD and their relatives to achieve better self-management of disease and improved life satisfaction. Further evaluations of programme outcomes in clinical practice are warranted. RELEVANCE OF CLINICAL PRACTICE: Self-management programmes like the NPS is a promising approach in facilitating a positive mindset and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better.

Support supplied by Parkinson's disease specialist nurses to Parkinson's disease patients and their spouses.

AIM: The purpose of the study was to identify the role of the Parkinson's disease specialist nurse in providing support both for people with Parkinson's disease (PD) and their spouses. BACKGROUND: PD is a neurodegenerative disease with symptoms that affect many aspects of daily life. In Sweden, specialised nurses called Parkinson's disease specialist nurses (PD specialist nurses) have been working for over a decade to support PD patients and their families. METHOD: A qualitative approach was taken using dyad interviews with each PD patient and spouse. The analysis was conducted using conventional qualitative content analysis. FINDINGS: The analysis resulted in the identification of one overarching category; competent, professional practice, tailored for the individual. Four categories: professional competence, nursing practice, continuity of contact and emotional support, are distinct but related to each other and show different nuances of the same phenomenon. CONCLUSION: The work of PD specialist nurses in providing support to PD patients and their relatives should be tailored to individual patients and their families as well as including skilled nursing care to relieve the impact of the disease on daily life.

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

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.

Self-Management Education for Persons with Parkinson's Disease and Their Care Partners: A Quasi-Experimental Case-Control Study in Clinical Practice.

BACKGROUND: Parkinson's disease is a neurodegenerative condition with both physical and mental consequences that affect many aspects of everyday life. Persons with Parkinson's disease and their care partners want guidance from healthcare services in order to develop skills to adjust to life with a long-term condition. The Swedish National Parkinson School is a dyadic self-management programme to support both persons with Parkinson's disease and care partners. OBJECTIVE: To assess the outcomes of the Swedish National Parkinson School as reported by participants. DESIGN: A quasi-experimental case-control study in clinical care using self-reported questionnaires. Participants. Swedish National Parkinson School was offered by health care professionals working in clinical care. Participants in the programme were also asked to participate in the study. A matched control group was recruited for a comparison of findings. In total, 92 persons with Parkinson's disease and 55 care partners were included. Settings. Five Swedish geriatric and neurologic outpatient clinics. METHOD: Data were collected during 2015-2017, before and after participation in the National Parkinson School or before and after seven weeks of standard care. Outcomes were assessed using generic and Parkinson's specific questionnaires. Descriptive statistics were used to describe baseline characteristics. Mann-Whitney U and Chi2 tests were used to test for between-group differences and within-group differences were tested by the Wilcoxon signed-ranks test. RESULTS: Improvements regarding health status, constructive attitudes and approaches, and skill and technique acquisition were found after the intervention among persons with Parkinson's disease. No changes were found among care partners. CONCLUSION: The findings indicate that the Swedish National Parkinson School may improve health status and self-management among persons with Parkinson's disease, but further studies are needed to better understand the effects of the programme.

Apomorphine formulation may influence subcutaneous complications from continuous subcutaneous apomorphine infusion in Parkinson's disease.

Continuous subcutaneous (s.c.) apomorphine infusion is an effective therapy for Parkinson's disease (PD), but a limitation is the formation of troublesome s.c. nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal experiences have suggested that shifting from one of these (Apo-Go PumpFill®; apoGPF) to another (Apomorphine PharmSwed®; apoPS) may influence the occurrence and severity of s.c. nodules. We, therefore, followed 15 people with advanced PD (median PD-duration, 15 years; median "off"-phase Hoehn and Yahr, IV) on apoGPF and with troublesome s.c. nodules who were switched to apoPS. Data were collected at baseline, at the time of switching, and at a median of 1, 2.5, and 7.3 months post-switch. Total nodule numbers (P < 0.001), size (P < 0.001), consistency (P < 0.001), skin changes (P = 0.058), and pain (P ≤ 0.032) improved over the observation period. PD severity and dyskinesias tended to improve and increase, respectively. Apomorphine doses were stable, but levodopa doses increased by 100 mg/day. Patient-reported apomorphine efficacy tended to increase and all participants remained on apoPS throughout the observation period; with the main patient-reported reason being improved nodules. These observations suggest that patients with s.c. nodules caused by apoGPF may benefit from switching to apoPS in terms of s.c. nodule occurrence and severity. Alternatively, observed benefits may have been due to the switch itself. As nodule formation is a limiting factor in apomorphine treatment, a controlled prospective study comparing local tolerance with different formulations is warranted.

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.