| 1. |
- Carina, Hellqvist, et al.
(författare)
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A national Swedish self- management program for people with Parkinson’s disease : patients and relatives view
- 2017
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Ingår i: Movement Disorders. ; , s. 175-176
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Konferensbidrag (refereegranskat)abstract
- Objective: To identify and describe experiences that people with PD and their relatives after participation inthe self-management intervention NPS (National Parkinson School) find valuable for managing daily life.Background: A self-management program called NPS was developed as a collaboration of healthcare providers, researchers and patient organizations. NPS is aiming to provide tools and strategies for people with PD and their relatives to increase ability to manage symptoms and consequences of disease and thereby improving conditions for a good life. Self-monitoring and self-management are central concepts. NPS focuses on life with PD, which via 7 sessions consisting of education/lectures and group discussions are mediated. Home assignments make participants practice the new skills in their own life.Methods: The last session, evaluation of the NPS, was audio recorded in its whole and transcribed verbatim. Data was collected from five separate clinics and analysed both inductively and deductively using Thematic Analysis and by applying the Self-and Family management theory.Results: Through inductive analysis three themes; Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life and Promoting life satisfaction, were identified and described. The themes are capturing the meaning, value and experience of being a participant of NPS. Deductive analysis indicated thatthe Self-and Family management theory was useful and valid for this group of patients and generated a modified framework applicable for patients with PD and their families [figure1].Conclusions: Living with PD affects patients as well as relatives. Meeting others in the same situation gives support and strengthen their self- image. Having the opportunity sharing experiences and practical advices showed that there was a hopeful future to come. Techniques to accept and manage life with PD included seeking information about disease and treatments, self-monitoring in order to adjust to new situations and improve symptoms of disease and having a positive mind-set. Living an active life, participating in enjoyable social, cultural, and physical activities were important to feel happy and satisfied with life. Participation in NPS covered many areas of importance for the ability of self-management in PD. The framework for self-management in chronic disease was found relevant also for the PD population
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| 2. |
- Carina, Hellqvist, et al.
(författare)
-
A national Swedish self- management program for people with Parkinson’s disease : patients and relatives view
- 2017
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Objective: To identify and describe experiences that people with PD and their relatives after participation inthe self-management intervention NPS (National Parkinson School) find valuable for managing daily life. Background: A self-management program called NPS was developed as a collaboration of healthcare providers, researchers and patient organizations. NPS is aiming to provide tools and strategies for people with PD and their relatives to increase ability to manage symptoms and consequences of disease and thereby improving conditions for a good life. Self-monitoring and self-management are central concepts. NPS focuses on life with PD, which via 7 sessions consisting of education/lectures and group discussions are mediated. Home assignments make participants practice the new skills in their own life. Methods: The last session, evaluation of the NPS, was audio recorded in its whole and transcribed verbatim. Data was collected from five separate clinics and analysed both inductively and deductively usingThematic Analysis and by applying the Self-and Family management theory. Results: Through inductive analysis three themes; Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life and Promoting life satisfaction, were identified and described. The themes are capturing the meaning, value and experience of being a participant of NPS. Deductive analysis indicated thatthe Self-and Family management theory was useful and valid for this group of patients and generated a modified framework applicable for patients with PD and their families [figure1]. Conclusions: Living with PD affects patients as well as relatives. Meeting others in the same situation gives support and strengthen their self- image. Having the opportunity sharing experiences and practical advices showed that there was a hopeful future to come. Techniques to accept and manage life with PD included seeking information about disease and treatments, self-monitoring in order to adjust to new situations and improve symptoms of disease and having a positive mind-set. Living an active life, participating in enjoyable social, cultural, and physical activities were important to feel happy and satisfied with life. Participation in NPS covered many areas of importance for the ability of self-management in PD. The framework for self-management in chronic disease was found relevant also for the PD population
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| 3. |
- Hagell, Peter, et al.
(författare)
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Apomorphine formulation influences subcutaneous complications in continuous apomorphine pump therapy for Parkinson’s disease
- 2017
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Ingår i: Movement Disorders.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Objective: To explore if the occurrence and severity of subcutaneous (sc) nodules is influenced by the pharmaceutical formulation of apomorphine used for sc infusion in advanced Parkinson’s disease (PD).Background: Apomorphine infusion is an effective therapy in advanced PD, but a limitation is troublesome sc nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal clinical experience has suggested that shifting from one of these (Apo-Go PumpFill; apoGPF) to another (Apomorphine PharmSwed; apoPS, developed in Sweden) may influence the occurrence and severity of sc nodules.Methods: In this multicenter open-label prospective observational study, 15 people with advanced PD (mean PD- duration, 13.4 years; median Hoehn & Yahr, IV) on apoGPF since a mean of 2.1 years and with troublesome sc nodules were switched to apoPS. Ongoing interventions to treat existing nodules (ultrasound, massage, Hirudoid cream) continued, and apomorphine as well as other drugs was managed according to clinical routines. Data were collected between May 2015 and March 2017; at baseline, at the time of switching (about 2 weeks later), and up to 1.7-4.2 (mean, 2.5) months post-switch follow-up. Primary outcomes were total nodule numbers, size (mm diameter for the 5 worst nodules), consistency (scored 0-3 for the 5 worst nodules), and associated skin changes (scored 0-4 for the 5 worst nodules) and pain (scored 0-5). Patients also rated their perceived PD severity and motor complications (UPDRS IV). Patient preferences 5-12 months post-switch (2-9 months after follow-up) were also recorded.Results: Apomorphine and L-dopa doses did not change over the observation period (P≥0.400). Baseline nodule numbers (7.4 vs. 4.6; P<0.003), size (92.9 vs. 54.1 mm; P=0.016), consistency (11 vs. 5; P=0.003), skin changes (3 vs. 1.5; P=0.205), and average pain (1 vs. 0; P=0.020) improved 11 weeks post-switch. Patient-reported PD severity (P=0.020) and motor fluctuations improved (P=0.051), whereas dyskinesias tended to increase (P=0.205). At 5-12 months post-switch, 13 patients had decided to remain on apoPS; mainly due to improved nodules.Conclusions: These observations suggest that apoPS may have a better safety profile compared to apoGPF in terms of sc nodule occurrence and severity. There is a need for larger, randomized controlled studies for firmer conclusions.
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| 4. |
- Hagell, Peter, et al.
(författare)
-
Apomorphine formulation influences subcutaneous complications in continuous apomorphine pump therapy for Parkinson’s disease
- 2017
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Objective: To explore if the occurrence and severity of subcutaneous (sc) nodules is influenced by the pharmaceutical formulation of apomorphine used for sc infusion in advanced Parkinson’s disease (PD). Background: Apomorphine infusion is an effective therapy in advanced PD, but a limitation is troublesome sc nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal clinical experience has suggested that shifting from one of these (Apo-Go PumpFill; apoGPF) to another (Apomorphine PharmSwed; apoPS, developed in Sweden) may influence the occurrence and severity of sc nodules. Methods: In this multicenter open-label prospective observational study, 15 people with advanced PD (mean PD- duration, 13.4 years; median Hoehn & Yahr, IV) on apoGPF since a mean of 2.1 years and with troublesome sc nodules were switched to apoPS. Ongoing interventions to treat existing nodules (ultrasound, massage, Hirudoid cream) continued, and apomorphine as well as other drugs was managed accordingto clinical routines. Data were collected between May 2015 and March 2017; at baseline, at the time of switching (about 2 weeks later), and up to 1.7-4.2 (mean, 2.5) months post-switch follow-up. Primary outcomes were total nodule numbers, size (mm diameter for the 5 worst nodules), consistency (scored 0-3 for the 5 worst nodules), and associated skin changes (scored 0-4 for the 5 worst nodules) and pain (scored 0-5). Patients also rated their perceived PD severity and motor complications (UPDRS IV). Patient preferences 5-12 months post-switch (2-9 months after follow-up) were also recorded. Results: Apomorphine and L-dopa doses did not change over the observation period (P≥0.400). Baseline nodule numbers (7.4 vs. 4.6; P<0.003), size (92.9 vs. 54.1 mm; P=0.016), consistency (11 vs. 5; P=0.003), skin changes (3 vs. 1.5; P=0.205), and average pain (1 vs. 0; P=0.020) improved 11 weeks post-switch. Patient-reported PD severity (P=0.020) and motor fluctuations improved (P=0.051), whereas dyskinesias tended to increase (P=0.205). At 5-12 months post-switch, 13 patients had decided to remain on apoPS; mainly due to improved nodules. Conclusions: These observations suggest that apoPS may have a better safety profile compared to apoGPF in terms of sc nodule occurrence and severity. There is a need for larger, randomized controlled studies for firmer conclusions.
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| 5. |
- Hellqvist, Carina, et al.
(författare)
-
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.
- 2018
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Ingår i: Journal of Clinical Nursing. - 0962-1067 .- 1365-2702. ; 27:19-20, s. 3719-3728
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVE: The two folded aim of this study was firstly 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 program 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 program.CONCLUSIONS: The NPS program 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 program outcomes in clinical practice are warranted.RELEVANCE OF CLINICAL PRACTICE: Self-management programs like the NPS is a promising approach in facilitating a positive mind-set and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better. This article is protected by copyright. All rights reserved.
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| 6. |
- Hellqvist, Carina, et al.
(författare)
-
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.
- 2018
-
Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell Publishing Ltd. - 0962-1067 .- 1365-2702. ; 27:19-20, s. 3719-3728
-
Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVE: The two folded aim of this study was firstly 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 program 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 program. CONCLUSIONS: The NPS program 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 program outcomes in clinical practice are warranted. RELEVANCE OF CLINICAL PRACTICE: Self-management programs like the NPS is a promising approach in facilitating a positive mind-set and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better. This article is protectedby copyright. All rights reserved.
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| 7. |
- Hellqvist, Carina, et al.
(författare)
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Support supplied by Parkinson's disease specialist nurses to Parkinson's disease patients and their spouses
- 2015
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Ingår i: Applied Nursing Research. - : Saunders Elsevier. - 0897-1897 .- 1532-8201. ; 28:2, s. 86-91
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Tidskriftsartikel (refereegranskat)abstract
- 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
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