From inclusion to independence--training consumers to review research.
Ontology highlight
ABSTRACT:
SUBMITTER: Saunders C
PROVIDER: S-EPMC2292183 | biostudies-literature | 2008 Mar
REPOSITORIES: biostudies-literature
Publications
From inclusion to independence--training consumers to review research.
Saunders Carla C Girgis Afaf A Butow Phyllis P Crossing Sally S Penman Andrew A
Health research policy and systems 20080309
Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decision ...[more]
Similar Datasets
Project description:BackgroundChildren with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research.MethodsA scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis.ResultsA total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research.ConclusionFurther effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.
| S-EPMC9436059 | biostudies-literature
Project description:Qualitative systematic reviews or qualitative evidence syntheses (QES) are increasingly recognised as a way to enhance the value of systematic reviews (SRs) of clinical trials. They can explain the mechanisms by which interventions, evaluated within trials, might achieve their effect. They can investigate differences in effects between different population groups. They can identify which outcomes are most important to patients, carers, health professionals and other stakeholders. QES can explore the impact of acceptance, feasibility, meaningfulness and implementation-related factors within a real world setting and thus contribute to the design and further refinement of future interventions. To produce valid, reliable and meaningful QES requires systematic identification of relevant qualitative evidence. Although the methodologies of QES, including methods for information retrieval, are well-documented, little empirical evidence exists to inform their conduct and reporting.This structured methodological overview examines papers on searching for qualitative research identified from the Cochrane Qualitative and Implementation Methods Group Methodology Register and from citation searches of 15 key papers.A single reviewer reviewed 1299 references. Papers reporting methodological guidance, use of innovative methodologies or empirical studies of retrieval methods were categorised under eight topical headings: overviews and methodological guidance, sampling, sources, structured questions, search procedures, search strategies and filters, supplementary strategies and standards.This structured overview presents a contemporaneous view of information retrieval for qualitative research and identifies a future research agenda. This review concludes that poor empirical evidence underpins current information practice in information retrieval of qualitative research. A trend towards improved transparency of search methods and further evaluation of key search procedures offers the prospect of rapid development of search methods.
| S-EPMC4855695 | biostudies-other
Project description:The All of Us Research Program (All of Us) is a national effort to accelerate health research by exploring the relationship between lifestyle, environment, and genetics. It is set to become one of the largest research efforts in U.S. history, aiming to build a national resource of data from at least one million participants. All of Us aims to address the need for more diversity in research and set the stage for that diversity to be leveraged in precision medicine research to come. This paper describes how the program assessed demographic characteristics of participants who have enrolled in other U.S. biomedical research cohorts to better understand which groups are traditionally represented or underrepresented in biomedical research. We 1) reviewed the enrollment characteristics of national cohort studies like All of Us, and 2) surveyed the literature, focusing on key diversity categories essential to the program's enrollment aims. Based on these efforts, All of Us emphasizes enrollment of racial and ethnic minorities, and has formally designated the following additional groups as historically underrepresented: individuals-with inadequate access to medical care; under the age of 18 or over 65; with an annual household income at or below 200% of the federal poverty level; who have a cognitive or physical disability; have less than a high school education or equivalent; are intersex; identify as a sexual or gender minority; or live in rural or non-metropolitan areas. Research accounting for wider demographic variability is critical. Only by ensuring diversity and by addressing the very barriers that limit it, can we position All of Us to better understand and tackle health disparities.
| S-EPMC7329113 | biostudies-literature
Project description:Poor self-awareness co-occurs with cognitive impairments after stroke and may influence independence in daily activities. Strategy training promotes independence after stroke, but poor awareness may attenuate treatment response. We examined the degree to which awareness status affected changes in independence attributed to strategy training.We conducted a secondary analysis of 30 participants with cognitive impairments after acute stroke randomized to strategy training or attention control in addition to typical inpatient rehabilitation. We measured awareness with the Self-Awareness of Deficits Interview and independence with the FIM™. Data were analyzed using general linear models.Poor awareness attenuated improvements in independence over time, F(3, 55) = 3.04, p = .038. Strategy training promoted greater improvements in independence over time relative to attention control, F(3, 55) = 5.93, p = .002. However, the interaction between awareness and intervention was not significant, F(1, 19) = 0.025, p = .877.Awareness status may not affect the response to strategy training, indicating that strategy training may benefit people with poor awareness.
| S-EPMC5744716 | biostudies-literature
Project description:Foodborne illness has a substantial health and economic burden on society, and most cases are believed to be due to unsafe food handling practices at home. Several qualitative research studies have been conducted to investigate consumers' perspectives, opinions, and experiences with safe food handling at home, and these studies provide insights into the underlying barriers and facilitators affecting their safe food handling behaviours. We conducted a systematic review of previously published qualitative studies in this area to synthesize the main across-study themes and to develop recommendations for future consumer interventions and research. The review was conducted using the following steps: comprehensive search strategy; relevance screening of abstracts; relevance confirmation of articles; study quality assessment; thematic synthesis of the results; and quality-of-evidence assessment. A total of 39 relevant articles reporting on 37 unique qualitative studies were identified. Twenty-one barriers and 10 facilitators to safe food handling were identified, grouped across six descriptive themes: confidence and perceived risk; knowledge-behaviour gap; habits and heuristics; practical and lifestyle constraints; food preferences; and societal and social influences. Our overall confidence that each barrier and facilitator represents the phenomenon of interest was rated as high (n = 11), moderate (11), and low (9). Overarching analytical themes included: 1) safe food handling behaviours occur as part of a complex interaction of everyday consumer practices and habituation; 2) most consumers are not concerned about food safety and are generally not motivated to change their behaviours based on new knowledge about food safety risks; and 3) consumers are amenable to changing their safe food handling habits through relevant social pressures. Key implications and recommendations for research, policy and practice are discussed.
| S-EPMC5132243 | biostudies-literature
Project description:IntroductionOlder adults have a high disease burden but are often underrepresented in research studies due to recruitment and retention obstacles, among others. Geriatric research specialists have identified solutions to these challenges and designed frameworks to help other researchers. Our team utilized three frameworks to create an interactive webinar series aimed to educate research team members on Age-Friendly practices.MethodsWe recruited 40 non-aging-trained research team members to participate in a six-session, real-time webinar series from October to November 2022. Sessions were comprised of 20-30 minute didactics and 30-40 minute group discussions. Participants completed pre- and post-program surveys, commitment to change forms, and post-webinar session surveys. Responses were examined for strengths and areas for improvement. Wilcoxon signed-rank tests assessed differences in confidence scores.ResultsSelf-reported confidence scores improved after the webinar series. Most participants provided positive feedback and high likeliness to use what they learned and recommend the webinar to others. The strengths were practical tips, applicable tools, and real-world examples. The major area for improvement was information on industry-sponsored trials. The commitment to change responses varied from pledging to use more inclusive language to adapting materials to improve the consent process.ConclusionThis interactive Age-Friendly Research webinar series was feasible and well received by participants. We created an Age-Friendly Research community fostering commitment to change clinical and translational research to be more inclusive of older adults. Future work will include more information on industry-sponsored trials and expand to other research centers.
| S-EPMC10565191 | biostudies-literature
Project description:An increasing number of behavioral and psychosocial cancer interventions incorporate new media elements that are digital, networked, and interactive. However, it is unclear to what extent new media is being leveraged to benefit underserved racial and ethnic groups who disproportionately bear the burden of cancer. This inquiry is timely in light of growing evidence that these groups are receptive to new media. A systematic literature review was conducted to assess the inclusion of these groups in research on cancer-related new media interventions and use of new media to reduce racial and ethnic cancer disparities.A systematic search of three databases was conducted for articles published between January 2000 and March 2012 that presented studies of user experience with a behavioral or psychosocial cancer-related intervention with at least one new media component.Thirty-six articles were included in the final review. In about one-quarter of the studies, less than 20% of participants were African American, Latino, Asian American, or American Indian. In less than 10% of the studies, 80% or more of the samples were members of the aforementioned groups. Almost one-third of the studies reviewed were categorized as disparity focused but limited data were available on racial and ethnic differences in responses to new media interventions.Findings suggest that the promise and potential of new media cancer interventions are largely unrealized among the underserved. Additional research is needed to investigate a wide range of issues related to the development and delivery of such interventions in diverse racial and ethnic groups.
| S-EPMC3881998 | biostudies-literature
Project description:BackgroundWe previously characterized hemisphere-specific motor control deficits in the ipsilesional, less-impaired arm of unilaterally lesioned stroke survivors. Our preliminary data indicate these deficits are substantial and functionally limiting in patients with severe paresis.MethodsWe have designed an intervention ("IPSI") to remediate the hemisphere-specific deficits in the ipsilesional arm, using a virtual-reality platform, followed by manipulation training with a variety of real objects, designed to facilitate generalization and transfer to functional behaviors encountered in the natural environment. This is a 2-site (primary site - Penn State College of Medicine, secondary site - University of Southern California), two-group randomized intervention with an experimental group, which receives unilateral training of the ipsilesional arm throughout 3 one-hour sessions per week for 5 weeks, through our Virtual Reality and Manipulation Training (VRMT) protocol. Our control group receives a conventional intervention on the contralesional arm, 3 one-hour sessions per week for 5 weeks, guided by recently released practice guidelines for upper limb rehabilitation in adult stroke. The study aims to include a total of 120 stroke survivors (60 per group) whose stroke was in the territory of the middle cerebral artery (MCA) resulting in severe upper-extremity motor impairments. Outcome measures (Primary: Jebsen-Taylor Hand Function Test, Fugl-Meyer Assessment, Abilhand, Barthel Index) are assessed at five evaluation points: Baseline 1, Baseline 2, immediate post-intervention (primary endpoint), and 3-weeks (short-term retention) and 6-months post-intervention (long-term retention). We hypothesize that both groups will improve performance of the targeted arm, but that the ipsilesional arm remediation group will show greater improvements in functional independence.DiscussionThe results of this study are expected to inform upper limb evaluation and treatment to consider ipsilesional arm function, as part of a comprehensive physical rehabilitation strategy that includes evaluation and remediation of both arms.Trial registrationThis study is registered with ClinicalTrials.gov (Registration ID: NCT03634397 ; date of registration: 08/16/2018).
| S-EPMC9002228 | biostudies-literature
Project description:BackgroundResearch capacity building (RCB) initiatives have gained steady momentum in health settings across the globe to reduce the gap between research evidence and health practice and policy. RCB strategies are typically multidimensional, comprising several initiatives targeted at different levels within health organisations. Research education and training is a mainstay strategy targeted at the individual level and yet, the evidence for research education in health settings is unclear. This review scopes the literature on research education programs for nurses and allied health professionals, delivered and evaluated in healthcare settings in high-income countries.MethodsThe review was conducted systematically in accordance with the Joanna Briggs Institute scoping review methodology. Eleven academic databases and numerous grey literature platforms were searched. Data were extracted from the included full texts in accordance with the aims of the scoping review. A narrative approach was used to synthesise findings. Program characteristics, approaches to program evaluation and the outcomes reported were extracted and summarised.ResultsDatabase searches for peer-reviewed and grey literature yielded 12,457 unique records. Following abstract and title screening, 207 full texts were reviewed. Of these, 60 records were included. Nine additional records were identified on forward and backward citation searching for the included records, resulting in a total of 69 papers describing 68 research education programs. Research education programs were implemented in fourteen different high-income countries over five decades. Programs were multifaceted, often encompassed experiential learning, with half including a mentoring component. Outcome measures largely reflected lower levels of Barr and colleagues' modified Kirkpatrick educational outcomes typology (e.g., satisfaction, improved research knowledge and confidence), with few evaluated objectively using traditional research milestones (e.g., protocol completion, manuscript preparation, poster, conference presentation). Few programs were evaluated using organisational and practice outcomes. Overall, evaluation methods were poorly described.ConclusionResearch education remains a key strategy to build research capacity for nurses and allied health professionals working in healthcare settings. Evaluation of research education programs needs to be rigorous and, although targeted at the individual, must consider longer-term and broader organisation-level outcomes and impacts. Examining this is critical to improving clinician-led health research and the translation of research into clinical practice.
| S-EPMC9121620 | biostudies-literature
