Dataset Information

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis.

ABSTRACT:

Objective

To examine the proportion of people with aphasia (PwA) included and retained in randomised controlled trials (RCTs) of stroke interventions published in the previous 6 years, as well as aphasia-relevant eligibility criteria and inclusion/retention strategies.

Data sources

Comprehensive searching of Embase, PubMed and Medline (Ovid) for the period January 2016 - November 2022.

Review methods

RCTs examining stroke interventions targeting cognition, psychological wellbeing/health-related quality of life (HRQL), multidisciplinary rehabilitation, and self-management were included. Methodological quality was assessed using the Critical Appraisal Skills Programme (CASP) Randomised Controlled Trial checklist. Descriptive statistics were applied to extracted data, and results were reported narratively.

Results

Fifty-seven RCTs were included. These examined self-management (32%), physical (26%) psychological wellbeing/HRQL (18%), cognitive (14%), and multidisciplinary (11%) interventions. Of 7313 participants, 107 (1.5%) had aphasia and were included in three trials. About one-third did not report on aphasia (32%); over one quarter required functional communication (28%); one quarter excluded all aphasia (25%); and 14% excluded severe aphasia. No aphasia-specific inclusion/retention strategies were available.

Conclusion

The findings highlight ongoing under-representation. However, due to shortcomings in aphasia reporting, the findings may underestimate actual inclusion rate. Excluding PwA has implications for the external validity, effectiveness, and implementation of stroke research findings. Triallists may require support in aphasia research strategies and methodological reporting.

SUBMITTER: Vaughan E

PROVIDER: S-EPMC10426244 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis.

Vaughan Eileen E Manning Molly X MX

Clinical rehabilitation 20230515 10

<h4>Objective</h4>To examine the proportion of people with aphasia (PwA) included and retained in randomised controlled trials (RCTs) of stroke interventions published in the previous 6 years, as well as aphasia-relevant eligibility criteria and inclusion/retention strategies.<h4>Data sources</h4>Comprehensive searching of Embase, PubMed and Medline (Ovid) for the period January 2016 - November 2022.<h4>Review methods</h4>RCTs examining stroke interventions targeting cognition, psychological wel ...[more]

PMID: 37186769

Similar Datasets

Project description:BackgroundThere is increased focus on supporting people with chronic conditions to live well via person-centred, integrated care. There is a growing body of qualitative literature examining the insider perspectives of people with post-stroke aphasia (PWA) on topics relating to personal recovery and living successfully (PR-LS). To date no synthesis has been conducted examining both internal and external, structural influences on living well. In this study, we aimed to advance theoretical understanding of how best to promote and support PR-LS by integrating the perspectives of PWA on a wide range of topics relating to PR-LS. This is essential for planning and delivering quality care.Methods and findingsWe conducted a systematic review, following PRISMA guidelines, and thematic synthesis. Following a search of 7 electronic databases, 31 articles were included and critically appraised using predetermined criteria. Inductive and iterative analysis generated 5 analytical themes about promoting PR-LS. Aphasia occurs in the context of a wider social network that provides valued support and social companionship and has its own need for formal support. PWA want to make a positive contribution to society. The participation of PWA is facilitated by enabling environments and opportunities. PWA benefit from access to a flexible, responsive, life-relevant range of services in the long-term post-stroke. Accessible information and collaborative interactions with aphasia-aware healthcare professionals empower PWA to take charge of their condition and to navigate the health system.ConclusionThe findings highlight the need to consider wider attitudinal and structural influences on living well. PR-LS are promoted via responsive, long-term support for PWA, friends and family, and opportunities to participate autonomously and contribute to the community. Shortcomings in the quality of the existing evidence base must be addressed in future studies to ensure that PWA are meaningfully included in research and service development initiatives.Systematic review registrationInternational Prospective Register of Systematic Reviews PROSPERO 2017: CRD42017056110.

Project description:BackgroundParkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD.ObjectiveThis review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD.MethodsThe method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist.ResultsA total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology.ConclusionsPeer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.

Project description:Physical activity (PA) has positive effects on the physical and cognitive functioning of people with dementia. Knowledge about what limits and stimulates people with dementia to participate in PA is essential to promote effective PA implementation and enhance PA levels. Previous reviews primarily included opinion-based studies, using data from interviews, focus groups or dyads. By including implementation studies, we aimed to elaborate on previous reviews by identifying new barriers to PA and new facilitators and motivators for PA. We conducted systematic searches in Pubmed, PsychInfo and Web of Science for studies published up to the 21st of September 2021. Search terms were related to the population of people with dementia, PA interventions and implementation outcomes. Studies were included if PA participation was investigated during actual PA implementation. No restrictions were made regarding study design, date of publication, PA type or outcome measures. Studies not implementing PA or not evaluating the implementation were excluded. Based on 13 empirical studies, we identified 35 barriers, 19 facilitators and 12 motivators. Of these, 21 barriers, 11 facilitators and 4 motivators were not identified by previous reviews. New factors are related to the support for people with dementia from informal and formal caregivers, e.g., revealing the importance of a trusting relationship. Furthermore, support for staff from the institution or an external party is needed to overcome doubts about PA, for example, related to safety and effects. New factors also suggested specific recommendations for the content and organization of the PA intervention, for instance, related to how to give instructions. Overall, factors affecting PA identified with opinion-based or implementation studies are complementary. Our extended overview shows the complexity of PA implementation and may help to personalize PA, develop implementation strategies, facilitate actual PA implementation and free up resources needed for effective implementation.

Project description:BackgroundAmyotrophic Lateral Sclerosis (ALS) significantly impacts the lives of people with the diagnosis and their families. A supportive social environment is important for people with ALS to adopt effective coping strategies and health behaviours, and reduce depressive symptoms. Peer support can provide a supportive social environment and can happen in-person and online. Advantages of online peer support are that people can engage from their own home, at their own time and pace, and that it offers a variety of different platforms and modes of communication.ObjectivesTo (1) explore the benefits and challenges of online peer support for people with ALS, and (2) identify successful elements of online peer support for people with ALS.MethodsThe method selected for this systematic review was a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The search was updated in June 2022. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist.Results10,987 unique articles were identified through the systematic database search. Of those, 9 were included in this review. One of the main benefits of online peer support was that people could communicate using text rather than needing verbal communication, which can be challenging for some with ALS. Successful elements included using profile pages and graphics to identify others with similar or relevant experiences. Challenges included ALS symptoms which could make it difficult to use technological devices.ConclusionsPeer support can provide a non-judgmental and supportive environment for people with ALS, in which they can exchange experiences and emotional support, which can help people in developing adaptive coping strategies. However, ALS symptoms may make it more difficult for people to use technological devices and engage in online peer support. More research is needed to identify what kind of specific barriers people with ALS experience, and how these could be overcome.

Project description:BackgroundPasung is the term used in Indonesia and a number of other countries for seclusion and restraint of people with mental illness in the community, usually at home by their family. While pasung has been banned because it is contrary to human rights, its practice continues to exist within the community, particularly where community mental health services are limited, and in the absence of adequate social support, and pervasive negatives beliefs about mental illness. It is essential to understand the reasons for the ongoing use of pasung and to examine potential solutions.MethodsA systematic review and narrative synthesis of peer-reviewed international literature was conducted to identify the socio-cultural contexts for pasung use, and interventions to address it. The analysis draws on the socio-ecological framework, which focused on relationships between the individual and their environment.ResultFifty published articles were included in the review; all studies were conducted in Asia and Africa, with 32 undertaken in Indonesia. Most studies were qualitative (n = 21). Others included one case-control study, one cross-sectional study, and seven surveys; only four studies examined the application of an intervention, and each used a pre and post methodology. Of these, two studies tested psychoeducational interventions which aimed to overcome family burden due to pasung, and each suggested a community mental health approach. The remaining two studies evaluated the intervention of 'unlocking'; one study used a community-based culturally sensitive approach, and the other used a community-based rehabilitation program. Reasons for pasung given by family appear to be as a last resort and in the absence of other supports to help them care for the person with severe mental illness.ConclusionThe findings highlight that a mixture of individual, interpersonal, community and policy interventions are needed to reduce the use of pasung. While consumer and carer involvement as part of a socio-ecological approach is understood to be effective in reducing pasung, an understanding of how to elaborate this in the management of pasung remains elusive. Review Registration CRD42020157543: CRD.

Project description:IntroductionStroke is a frequent disease in the older population of Western Europe with aphasia as a common consequence. Aphasia is known to impede targeting treatment to individual patients' needs and therefore may reduce treatment success. In Germany, the postacute care of patients who had stroke is provided by different healthcare institutions of different sectors (rehabilitation, nursing and primary care) with substantial difficulties to coordinate services. We will conduct two qualitative evidence syntheses (QESs) aiming at exploring distinct healthcare needs and desires of older people living with poststroke aphasia. We thereby hope to support the development of integrated care models based on needs of patients who are very restricted to communicate them. Since various methods of QESs exist, the aim of the study embedding the two QESs was to determine if findings differ according to the approach used.Methods and analysisWe will conduct two QESs by using metaethnography (ME) and thematic synthesis (ThS) independently to synthesise the findings of primary qualitative studies. The main differences between these two methods are the underlying epistemologies (idealism (ME) vs realism (ThS)) and the type of research question (emerging (ME) vs fixed (ThS)).We will search seven bibliographical databases. Inclusion criteria comprise: patients with poststroke aphasia, aged 65 years and older, studies in German/English, all types of qualitative studies concerning needs and desires related to healthcare or the healthcare system. The protocol was registered in the International Prospective Register of Systematic Reviews, follows Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines and includes three items from the Enhancing Transparency in Reporting the synthesis of Qualitative Research checklist.Ethics and disseminationEthical approval is not required. Findings will be published in a peer-reviewed journal and presented on national conferences.

Dataset Information

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis.

Objective

Data sources

Review methods

Results

Conclusion

Publications

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets