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Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway., Methods: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark ( n  = 9) and Norway ( n  = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches., Results: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role., Discussion: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Aim: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease., Background: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting., Design: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ., Methods: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings., Results: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management., Conclusions: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions., Patient or Public Contribution: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings., Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson' disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey., (© 2023 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Background: Up to one third of all stroke patients suffer from one or more psychosocial impairments. Recognition and treatment of these impairments are essential in improving psychosocial well-being after stroke. Although nurses are ideally positioned to address psychosocial well-being, they often feel insecure about providing the needed psychosocial care. Therefore, we expect that providing nurses with better knowledge to deliver this care could lead to an improvement in psychosocial well-being after stroke. Currently it is not known which interventions are effective and what aspects of these interventions are most effective to improve psychosocial well-being after stroke., Objective: To identify potentially effective interventions - and intervention components - which can be delivered by nurses to improve patients' psychosocial well-being after stroke., Methods: A systematic review and data synthesis of randomized controlled trials and quasi experimental studies was conducted. Papers were included according to the following criteria: 1) before-after design, 2) all types of stroke patients, 3) interventions that can be delivered by nurses, 4) the primary outcome(s) were psychosocial. PubMed, Embase, PsychInfo, CINAHL and Cochrane library were searched (August 2019-April 2022). Articles were selected based on title, abstract, full text and quality. Quality was assessed by using Joanna Briggs Institute checklists and a standardized data extraction form developed by Joanna Brigss Institute was used to extract the data., Results: In total 60 studies were included, of which 52 randomized controlled trials, three non-randomized controlled trials, four quasi-experimental studies, and one randomized cross-over study. Nineteen studies had a clear psychosocial content, twenty-nine a partly psychosocial content, and twelve no psychosocial content. Thirty-nine interventions that showed positive effects on psychosocial well-being after stroke were identified. Effective intervention topics were found to be mood, recovery, coping, emotions, consequences/problems after stroke, values and needs, risk factors and secondary prevention, self-management, and medication management. Active information and physical exercise were identified as effective methods of delivery., Discussion: The results suggest that interventions to improve psychosocial well-being should include the intervention topics and methods of delivery that were identified as effective. Since effectiveness of the intervention can depend on the interaction of intervention components, these interactions should be studied. Nurses and patients should be involved in the development of such interventions to ensure it can be used by nurses and will help improve patients' psychosocial well-being., Funding and Registration: This study was supported by the Taskforce for Applied Research SIA (RAAK.PUB04.010). This review was not registered., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease., Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships., Methods: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings., Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services., Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory., Patient or Public Contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK - Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: A commonly applied control condition in trials evaluating complex interventions in rehabilitation research is "usual care." The main challenge is to ensure that the control group receives genuine usual care as delivered in everyday clinical practice. The assessment interviews and dialogues with the data collectors may influence the control group participants' reflections on their condition and adjustments. This represents a threat to the internal validity of the trial. Thus, the aim of this study was to explore the perceived study-induced influence of assessment interviews on the adjustment of the members of a control group in a randomized clinical trial. The aim of the trial was to test a dialogue-based psychosocial intervention aiming at promoting the psychosocial well-being and adjustment of stroke survivors., Methods: Fifteen participants in the control group of a multicenter stroke rehabilitation trial participated in narrative semi-structured interviews. Ricoeur's interpretation theory guided the analysis., Results: The perceived study-induced influence of the assessment interviews on the adjustment process of members of the control group varied considerably. The results demonstrated that the assessment interviews facilitated some participants' feelings of control and their ability to cope. Other participants' statements indicate that they relied on their existing personal capacity to cope and adjust and that the assessment interviews did not make any difference either on their coping ability or on their process of adjustment. Five themes were identified that described the perceived study-induced influence of the assessment interviews in the control group. The themes illustrated that the assessments served as a safety net, enhanced awareness and understanding, encouraged seeking support, allowed the opportunity to vent disappointment, or did not make any difference either way., Conclusions: RCT assessment interviews may influence the adjustment process and represent a serious problem in measuring interventions over time in trials of complex interventions in rehabilitation research. To uphold rigor and stringency, the usual care control conditions should be thoroughly assessed and described. Informing participants only about the treatment they were allocated to receive might counteract the potential to dilute the difference between the two arms of the trial., Trial Registration: ClinicalTrials.gov NCT02338869. Registered on October 4, 2014., (© 2021. The Author(s).)

Background: Persons with stroke are susceptible to psychosocial problems, and express disappointment at how health care professionals fail to meet their psychosocial needs following discharge to home. The responsibility of nurses and occupational therapists in stroke rehabilitation is to assist the persons and their families during the recovery and adjustment process. A home-based dialogical intervention aiming to enhance psychosocial support was therefore developed and tested in a randomized controlled trial. This study is a part of the process evaluation conducted alongside the trial. The aim was to explore the nurses' and occupational therapists' experiences of conducting the intervention., Methods: Eighteen nurses and four occupational therapists participated in six focus groups to explore their experiences when providing the intervention. The themes discussed in the focus groups were the aspects that facilitated the delivering of the intervention and the challenges they encountered during the study period. The interviews were analysed using qualitative content analysis., Results: The analysis generated two themes. The theme Developing a supportive relationship to facilitate the adjustment process following stroke had two subthemes: Getting personally involved and Handling challenges. This theme reveals how the nurses and occupational therapists experienced their relationship with the persons with stroke and potential threats which challenged them while conducting the intervention. The theme Developing professional skills in providing psychosocial support had two subthemes: Becoming confident in conducting dialogues and Integrating psychosocial topics. This theme reveals the aspects that the nurses and occupational therapists perceived as facilitating the development of their professional skills in conducting the dialogues., Conclusion: Delivering the psychosocial intervention was perceived as deeply meaningful and increased the nurses' and occupational therapists' understanding of how to support stroke survivors to live with the consequences of stroke. However, balancing the professional and the personal relationship was challenging. A basic educational programme, training, supervision and having dedicated time were crucial elements to instil confidence in professionals conducting theme-based dialogues to promote post-stroke psychosocial well-being. Individual clinical experience and knowledge of stroke care were considering important to enable professionals to integrate psychosocial rehabilitation into community health care., Trial Registration: ClinicalTrials.gov, NCT02338869 , registered 10/04/2014., (© 2021. The Author(s).)

Objective: To evaluate the effect of a dialogue-based intervention targeting psychosocial well-being at 12 months post-stroke., Design: Multicenter, prospective, randomized, assessor-blinded, controlled trial with two parallel groups., Setting: Community., Subjects: Three-hundred and twenty-two adults (⩾18 years) with stroke within the last four weeks were randomly allocated into intervention group ( n  = 166) or control group ( n  = 156)., Interventions: The intervention group received a dialogue-based intervention to promote psychosocial well-being, comprising eight individual 1-1½ hour sessions delivered during the first six months post-stroke., Main Measures: The primary outcome measure was the General Health Questionnaire-28 (GHQ-28). Secondary outcome measures included the Stroke and Aphasia Quality of Life Scale-39g, the Sense of Coherence scale, and the Yale Brown single-item questionnaire., Results: The mean (SD) age of the participants was 66.8 (12.1) years in the intervention group and 65.7 (13.3) years in the control group. At 12 months post-stroke, the mean (SE) GHQ-28 score was 20.6 (0.84) in the intervention group and 19.9 (0.85) in the control group. There were no between-group differences in psychosocial well-being at 12 months post-stroke (mean difference: -0.74, 95% confidence interval (CI): -3.08, 1.60). The secondary outcomes showed no statistically significant between-group difference in health-related quality of life, sense of coherence, or depression at 12 months., Conclusion: The results of this trial did not demonstrate lower levels of emotional distress and anxiety or higher levels of health-related quality of life in the intervention group (dialogue-based intervention) as compared to the control group (usual care) at 12 months post-stroke.

Background: Fatigue is a common symptom associated with a wide range of diseases and needs to be more thoroughly studied. To minimise patient burden and to enhance response rates in research studies, patient-reported outcome measures (PROM) need to be as short as possible, without sacrificing reliability and validity. It is also important to have a generic measure that can be used for comparisons across different patient populations. Thus, the aim of this secondary analysis was to evaluate the psychometric properties of the Norwegian 5-item version of the Lee Fatigue Scale (LFS) in two distinct patient populations., Methods: The sample was obtained from two different Norwegian studies and included patients 4-6 weeks after stroke (n = 322) and patients with osteoarthritis on a waiting list for total knee arthroplasty (n = 203). Fatigue severity was rated by five items from the Norwegian version of the LFS, rating each item on a numeric rating scale from 1 to 10. Rasch analysis was used to evaluate the psychometric properties of the 5-item scale across the two patient samples., Results: Three of the five LFS items ("tired", "fatigued" and "worn out") showed acceptable internal scale validity as they met the set criterion for goodness-of-fit after removal of two items with unacceptable goodness-of-fit to the Rasch model. The 3-item LFS explained 81.6% of the variance, demonstrated acceptable unidimensionality, could separate the fatigue responses into three distinct severity groups and had no differential functioning with regard to disease group. The 3-item version of the LFS had a higher separation index and better internal consistency reliability than the 5-item version., Conclusions: A 3-item version of the LFS demonstrated acceptable psychometric properties in two distinct samples of patients, suggesting it may be useful as a brief generic measure of fatigue severity., Trial Registration: Clinicaltrials.gov: NCT02338869; registered 10/04/2014 (stroke study).

Stroke patients' well-being is threatened after stroke. A psychosocial intervention was developed for Norwegian stroke patients living in the community. Eight individual sessions between people with stroke and a trained health care professional were conducted 1 to 6 months post-stroke with one group of participants and 6 to 12 months post-stroke with another group. Subsequently, 19 of these stroke patients were interviewed to gain an in-depth understanding of their lived experience of the influence of the intervention on their adjustment process. Interview texts were analyzed using Ricoeur's interpretation theory. Two participants did not personally find the intervention useful. The remaining participants greatly appreciated dialogues with the empathetic intervention personnel, feeling free to discuss their fears and worries. The intervention raised these participants' awareness of their needs and resources. They were guided to resume their everyday life and adopt a future-oriented attitude. The intervention facilitated their meaning-making endeavors and post-stroke adjustment.

Objective: To evaluate the effect of a dialogue-based intervention on psychosocial well-being 6 months after stroke., Design: Multicentre, prospective, randomized controlled trial., Subjects: Adults (aged ≥ 18 years) who had their first or recurrent stroke within the last month, were medically stable, had sufficient cognitive functioning to participate and understood and spoke Norwegian., Methods: A total of 322 participants were randomly assigned to the intervention (n = 166) or control (n = 156) group. Participants in the intervention group received up to 8 individual sessions aimed at supporting the coping and life skills of stroke survivors in addition to usual care. The primary outcome was the proportion of participants with normal mood measured by the General Health Questionnaire-28 (GHQ-28). The secondary outcomes included health-related quality of life (Stroke and Aphasia Quality of Life Scale; SAQOL-39g), depression (Yale-Brown single-item questionnaire; Yale) and sense of coherence (SOC-13)., Results: After controlling for the baseline values, no significant benefit was found in the intervention group over the control group (odds ratio (OR): 0.898: 95% confidence interval (95% CI): 0.54-1.50, p = 0.680) 6 months post-stroke., Conclusion: Psychosocial well-being improved during the first 6 months after stroke in both arms of the trial, but no statistically significant benefit of the dialogue-based intervention was found compared with usual care.

Background: Several studies have documented the variety of post-stroke psychosocial challenges, which are complex, multifaceted, and affect a patient's rehabilitation and recovery. Due to the consequences of these challenges, psychosocial well-being should be considered an important outcome of the stroke rehabilitation. Thus, a valid and reliable instrument that is appropriate for the stroke population is required. The factor structure of the Norwegian version of GHQ-28 has not previously been examined when applied to a stroke population. The purpose of this study was to explore the psychometric properties of the GHQ-28 when applied in the stroke population included in the randomized controlled trial; "Psychosocial well-being following stroke", by evaluating the internal consistency, exploring the factor structure, construct validity and measurement invariance., Methods: Data were obtained from 322 individuals with a stroke onset within the past month. The Kaiser-Meyer-Olkin (KMO) test was used to test the sampling adequacy for exploratory factor analysis, and the Bartlett's test of sphericity was used to test equal variances. Internal consistency was analysed using Cronbach's alpha. The factor structure of the GHQ-28 was evaluated by exploratory factor analysis (EFA), and a confirmatory factor analysis (CFA) was used to determine the goodness of fit to the original structure of the outcome measurement. Measurement invariance for two time points was evaluated by configural, metric and scalar invariance., Results: The results from the EFA supported the four-factor dimensionality, but some of the items were loaded on different factors compared to those of the original structure. The differences resulted in a reduced goodness of fit in the CFA. Measurement invariance at two time points was confirmed., Conclusions: The change in mean score from one to six months on the GHQ-28 and the factor composition are assumed to be affected by characteristics in the stroke population. The results, when applying the GHQ-28 in a stroke population, and sub-factor analysis based on the original factor structure should be interpreted with caution., Trial Registration: ClinicalTrials.gov, NCT02338869 , registered 10/04/2014.

Background: Evaluation of complex interventions should include a process evaluation to give evaluators, researchers, and policy makers greater confidence in the outcomes reported from RCTs. Implementation fidelity can be part of a process evaluation and refers to the degree to which an intervention is delivered according to protocol. The aim of this implementation fidelity study was to evaluate to what extent a dialogue-based psychosocial intervention was delivered according to protocol. A modified conceptual framework for implementation fidelity was used to guide the analysis., Methods: This study has an explanatory, sequential two-phase mixed methods design. Quantitative process data were collected longitudinally along with data collection in the RCT. Qualitative process data were collected after the last data collection point of the RCT. Descriptive statistical analyses were conducted to describe the sample, the intervention trajectories, and the adherence measures. A scoring system to clarify quantitative measurement of the levels of implementation was constructed. The qualitative data sources were analyzed separately with a theory-driven content analysis using categories of adherence and potential moderating factors identified in the conceptual framework of implementation fidelity. The quantitative adherence results were extended with the results from the qualitative analysis to assess which potential moderators may have influenced implementation fidelity and in what way., Results: The results show that the core components of the intervention were delivered although the intervention trajectories were individualized. Based on the composite score of adherence, results show that 80.1% of the interventions in the RCT were implemented with high fidelity. Although it is challenging to assess the importance of each of the moderating factors in relation to the other factors and to their influence on the adherence measures, participant responsiveness, comprehensiveness of policy description, context, and recruitment appeared to be the most prominent moderating factors of implementation fidelity in this study., Conclusions: This evaluation of implementation fidelity and the discussion of what constitutes high fidelity implementation of this intervention are crucial in understanding the factors influencing the trial outcome. The study also highlights important methodological considerations for researchers planning process evaluations and studies of implementation fidelity., Trial Registration: ClinicalTrials.gov , NCT02338869; registered 10/04/2014.