Abstract: Background: Chronic obstructive pulmonary disease (COPD) and asthma have a high prevalence and disease burden. Blended self-management interventions, which combine eHealth with face-to-face interventions, can help reduce the disease burden. Objective: This systematic review and meta-analysis aims to examine the effectiveness of blended self-management interventions on health-related effectiveness and process outcomes for people with COPD or asthma. Methods: PubMed, Web of Science, COCHRANE Library, Emcare, and Embase were searched in December 2018 and updated in November 2020. Study quality was assessed using the Cochrane risk of bias (ROB) 2 tool and the Grading of Recommendations, Assessment, Development, and Evaluation. Results: A total of 15 COPD and 7 asthma randomized controlled trials were included in this study. The meta-analysis of COPD studies found that the blended intervention showed a small improvement in exercise capacity (standardized mean difference [SMD] 0.48; 95% CI 0.10-0.85) and a significant improvement in the quality of life (QoL; SMD 0.81; 95% CI 0.11-1.51). Blended intervention also reduced the admission rate (relative ratio [RR] 0.61; 95% CI 0.38-0.97). In the COPD systematic review, regarding the exacerbation frequency, both studies found that the intervention reduced exacerbation frequency (RR 0.38; 95% CI 0.26-0.56). A large effect was found on BMI (d=0.81; 95% CI 0.25-1.34); however, the effect was inconclusive because only 1 study was included. Regarding medication adherence, 2 of 3 studies found a moderate effect (d=0.73; 95% CI 0.50-0.96), and 1 study reported a mixed effect. Regarding self-management ability, 1 study reported a large effect (d=1.15; 95% CI 0.66-1.62), and no effect was reported in that study. No effect was found on other process outcomes. The meta-analysis of asthma studies found that blended intervention had a small improvement in lung function (SMD 0.40; 95% CI 0.18-0.62) and QoL (SMD 0.36; 95% CI 0.21-0.50) and a moderate improvement in asthma control (SMD 0.67; 95% CI 0.40-0.93). A large effect was found on BMI (d=1.42; 95% CI 0.28-2.42) and exercise capacity (d=1.50; 95% CI 0.35-2.50); however, 1 study was included per outcome. There was no effect on other outcomes. Furthermore, the majority of the 22 studies showed some concerns about the ROB, and the quality of evidence varied. Conclusions: In patients with COPD, the blended self-management interventions had mixed effects on health-related outcomes, with the strongest evidence found for exercise capacity, QoL, and admission rate. Furthermore, the review suggested that the interventions resulted in small effects on lung function and QoL and a moderate effect on asthma control in patients with asthma. There is some evidence for the effectiveness of blended self-management interventions for patients with COPD and asthma; however, more research is needed. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42019119894; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=119894
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Onderzoek in de Verenigde Staten naar opvattingen en ervaringen van patiënten met het online inzien van hun eigen dossier (personal health record, PHR), inclusief aantekeningen van de behandelaren.
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This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
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In this project on volunteering in LTH organisation we focus on three aims:1. To explain why organisations in different LTH sectors and regions had, have or need volunteers, how they interact with these volunteers, and the consequences (benefits and challenges) of volunteerism for these organisations.2. To determine how to find the right balance between paid and unpaid staff within the same organisation, considering the LTH sector and region they belong to, in order to create a healthy ecosystem within it (bearing in mind that no organisation can have both volunteers and paid staff do the same job - see above).3. To understand the perspectives, motives and expectations of why people (decide to) volunteer, how they interact with the organisation (management, paid staff) during volunteering, in order to interest them, recruit them, make use of them and retain them. In addition, it is also our aim to explain the benefits and challenges for people to volunteer.In this study, we will use an integrated approach, which implies that we aren’t only interested in the people- or organisation-side of volunteering (actor-side). We will also focus on the interactions between volunteers, paid staff and organisation during volunteering (core of the practice) in a certain LTH organisation, sector and region in the Netherlands (context-side). Studying volunteering in its specific contexts (organisation, sector, region) using an integrated practice approach, hasn’t been done before. In addition, as more and more LTH organisations in the Netherlands rely on volunteers (for their survival), either for economic, social or community (mienskip) reasons (context-related conditions), there is a need for a better understanding of volunteering (as indicated by aim 1-3). Finally, as not much literature has been based on Dutch studies about volunteering and the recruitment and retention of volunteers, this project will fill this gap.Besides the aims as outlined before, a more specific goal of this project is to provide recommendations for a sustainable business model for organisations to embrace volunteerism without affecting the structure of employees. In close cooperation with different LTH organisations, we will develop interventions as policy making instruments (and therefore also for the whole region where they are located). Furthermore, this research will contribute to industry, research (see also below), education (idem) and society. Our ultimate goal is to foster the wellbeing of the volunteers, paid staff and organisations and overall to contribute to social sustainability within The Netherlands.The above-mentioned aims and conceptual model lead to the following research question: How can volunteering in the LTH sectors in Dutch regions be shaped in a sustainable way for both volunteers as well as organisations?In line with what we discussed earlier, this also means contributing to a more stable labour market in hospitality, leisure and tourism in which voluntary work is recognised as an important and indispensable component of a healthy labour ecosystem.The approach we intend to adopt is a qualitative one based on narrative inquiry. While in the literature a quantitative approach using surveys to gather data is mostly used in understanding volunteerism and in measuring motives, we will observe and connect with the volunteers’ work in each sector/case identified and collect and analyse their individual stories. In addition, and in line with our integrated approach, we will investigate how the LTH organisations connected to these cases view the role, value and future of volunteerism.Societal IssueOur insights into volunteers’ work in different sectors will improve their quality of work by revealing drivers of their satisfaction, turnover, motivation, and passion. Managers can use these insights to train and retain volunteers as an integral part of not only their events, but the broader community. It is well-known that robust volunteering programmes are a cornerstone of contemporary social cohesion, and our findings will show how storytelling can strengthen these processes.Benefit to societyThis project will contribute in three ways to the LTH sector. The three outcomes of this study are first around a better understanding of what meaningful volunteering is, second, around the value of volunteers to LTH organisations, and, thirdly, about the value of such activities to Dutch society.The project will provide practical advice to LTH organisations on which interventions to use and in which contexts. This tangible output might take the form of a report, guide(s) mentioned above, and/or another instrument that suits the needs of managers and volunteers. The instrument(s) selected by LTH organisations and volunteers will help to disseminate best practices as well as to highlight the potential of volunteers and volunteering to wider society, other organisations and to current and potential volunteers. By following the steps in or using these instruments, we believe volunteer organisations will be better able to profile themselves and to recruit and retain volunteers.The present study will bring innovation in the field by generating new narratives on volunteerism, and by designing an engaging and appealing path for volunteers to join organisations. At the same time, it will design a structure for organisations to work with volunteers in a sustainable way.Consortium partners: Rodney Westerlaken, Geesje Duursma (both NHL Stenden, Leeuwarden)
