Dataset Information

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

ABSTRACT:

Introduction

A growing body of evidence suggests that older adults are particularly vulnerable to poor care as they transition across care environments. Thus, they require transitional care services as they transition across healthcare settings. To help make intervention research meaningful to the older adults the intervention aims to serve, many researchers aim to study their experiences, by actively involving them in research processes. However, collecting data from older adults with various forms of disability often assumes that the research methods selected are appropriate for them. This scoping review will map the evidence on research methods to collect data from older adults with disabilities within the transitional care literature.

Methods

The proposed scoping review follows the framework originally described by the Joanna Briggs Institute (JBI) Manual: (1) developing a search strategy, (2) evidence screening and selection, (3) data extraction; and (4) analysis. We will include studies identified through a comprehensive search of peer-reviewed and empirical literature reporting on research methods used to elicit the experiences of older adults with disabilities in transitional care interventions. In addition, we will search the reference lists of included studies. The findings of this review will be narratively synthesized. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews will guide the reporting of the methods and results.

Discussion

The overarching goal of this study is to develop strategies to assist the research community in increasing the inclusion of older adults with disabilities in transitional care research. The findings of this review will highlight recommendations for research to inform data collection within future intervention research for older adults with disabilities. Study findings will be disseminated via a publication and presentations.

SUBMITTER: Kokorelias KM

PROVIDER: S-EPMC10588871 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Publications

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

Kokorelias Kristina M KM Abdelhalim Reham R Saragosa Marianne M Nelson Michelle L A MLA Singh Hardeep K HK Munce Sarah E P SEP

PloS one 20231020 10

<h4>Introduction</h4>A growing body of evidence suggests that older adults are particularly vulnerable to poor care as they transition across care environments. Thus, they require transitional care services as they transition across healthcare settings. To help make intervention research meaningful to the older adults the intervention aims to serve, many researchers aim to study their experiences, by actively involving them in research processes. However, collecting data from older adults with v ...[more]

PMID: 37862347

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Project description:BackgroundMany hospitalized older adults cannot be discharged because they lack the health and social support to meet their post-acute care needs. Transitional care programs (TCPs) are designed to provide short-term and low-intensity restorative care to these older adults experiencing or at risk for delayed discharge. However, little is known about the contextual factors (i.e., patient, staff and environmental characteristics) that may influence the implementation and outcomes of TCPs. This scoping review aims to answer: 1) What are socio-demographic and/or clinical characteristics of older patients served by TCPs?; 2) What are the core components provided by TCPs?; and 3) What patient, caregiver, and health system outcomes have been investigated and what changes in these outcomes have been reported for TCPs?MethodsThe six-step scoping review framework and PRISMA-ScR checklist were followed. Studies were included if they presented models of TCPs and evaluated them in community-dwelling older adults (65+) experiencing or at-risk for delayed discharge. The data synthesis was informed by a framework, consistent with Donabedian's structure-process-outcome model.ResultsTCP patients were typically older women with multiple chronic conditions and some cognitive impairment, functionally dependent and living alone. The review identified five core components of TCPs: assessment; care planning and monitoring; treatment; discharge planning; and patient, family and staff education. The main outcomes examined were functional status and discharge destination. The results were discussed with a view to inform policy makers, clinicians and administrators designing and evaluating TCPs as a strategy for addressing delayed hospital discharges.ConclusionTCPs can influence outcomes for older adults, including returning home. TCPs should be designed to incorporate interdisciplinary care teams, proactively admit those at risk of delayed discharge, accommodate persons with cognitive impairment and involve care partners. Additional studies are required to investigate the contributions of TCPs within integrated health care systems.

Project description:IntroductionMany hospitalised older adults experience delayed discharges due to increased postacute health and social support needs. Transitional care programmes (TCPs) provide short-term care to these patients to prepare them for transfer to nursing homes or back to the community with supports. There are knowledge gaps related to the development, implementation and evaluation of TCPs. The aims of this scoping review (ScR) are to identify the characteristics of older patients served by TCPs; criteria for transfer, components and services provided by TCPs; and outcomes used to evaluate TCPs.Methods and analysisThe study involves six-step ScR and is informed by a collaborative/participatory approach whereby stakeholders engage in the development of the research questions, identification of literature, data abstraction and synthesis; and participation in consultation workshop. The search for scientific literature will be done in the Medline, PsychINFO, Emcare and CINAHL databases; as well, policies and reports that examined models of transitional care and the outcomes used to evaluate them will be reviewed. Records will be selected if they involve community dwelling older adults aged 65 years or older, or indigenous persons 45 years or older; and presented in English, French, Dutch and German languages. Records will be screened, reviewed and abstracted by two independent reviewers. Extracted data will be analysed using descriptive statistics and a narrative analysis, and organised according to Donabedian's model of structure (characteristics of older adults experiencing delayed discharge and served by TCPs), process (TCP components and services) and outcome.Ethics and disseminationThis ScR does not require ethics approval. Dissemination activities include integrated knowledge translation (KT) (consultation with stakeholders throughout the study) and end-of-grant KT strategies (presentations at national and international conferences; and publication in peer-reviewed interdisciplinary journal).

Project description:BackgroundIndividuals with intellectual and developmental disabilities (IDD) face numerous health disparities, particularly in rural communities. However, they are rarely included in the research process to address these challenges as co-researchers. Little is known about the experience of how individuals with disabilities participate as co-researchers, or the barriers they face.ObjectiveThe current study explores the experiences of individuals with IDD as co-researchers through discussions with individuals with IDD themselves, those who support them, and disability researchers.MethodData were collected through focus groups with individuals with IDD, individuals who support those with IDD, and disability researchers. Each group was asked about their journey through the research process, from beginning to end. Data were analyzed thematically by two independent coders.ResultsWhile all groups viewed the inclusion of individuals with disabilities as co-researchers as valuable, many barriers still prevented this population from fully participating in the research process. Individuals with IDD viewed research positively, especially when the topics were personally relevant. However, many thought research was intimidating and wanted additional support. Support providers expressed that the people they support have lots to contribute to research and felt empowered when participating. Disability researchers discussed many barriers to include individuals with IDD as co-researchers, including limited time, resources, and inflexibility of research processes. Researchers felt they could use more experience working with individuals with disabilities as co-researchers to integrate these individuals into all aspects of the process.DiscussionThere is broad interest in including those with IDD as co-research, but many barriers remain. Full inclusion can be supported by developing a welcoming and accessible environment. Researchers may need institutional support and training to pursue inclusive IDD research. Asking individuals with IDD for their expertise, develop topics of research that those with IDD can relate to, and involving support providers may be helpful. Developing innovative strategies to support inclusion is needed from all groups.

Project description:ObjectivesIn response to the COVID-19 pandemic there have been significant developments in research, its conduct and the supporting ethical framework. While many protocols have been delayed, halted or modified, other research efforts have been accelerated, generating controversy. The goal of this paper is to determine the rates of references surrounding the ethical oversight of research as reported in current COVID-19-related research publications.DesignScoping review.SettingPopulation-based observational or interventional studies from December 2019 to May 2020 with sample size of two or more. Studies were searched through electronic databases including Medline, EMBASE, and Cochrane CENTRAL Register of Controlled Trials.ParticipantsEligibility criteria included participants within published studies who tested positive for COVID-19.Main outcomes and measuresData were extracted and charting methods included taking note of references to ethical frameworks, institutional review board (IRB), ethics committee (EC) or research ethics board (REB) involvement, consent processes, and other variables.Results11 556 articles were screened, with 656 included in the final analysis. References to ethics were present in 530 (80.8%) studies, with 491 (74.8%) involving IRB/ECs/REBs and 126 (19.2%) not referencing ethics. Consent processes were outlined in 201 (30.6%) studies, with 198 (30.2%) reporting that they obtained consent waivers, however, 257 (39.2%) did not mention consent at all. Differences (p<0.001) in ethics-related references were apparent when analysed by continent, publication type, sample size and IF.ConclusionsThe majority of published articles pertaining to COVID-19 research made mention of ethical considerations, however, national and regional variations in research ethics review requirements introduce heterogeneity between studies and raise important questions about the conduct of scientific research during global public emergencies.Trial registration numberOpen Science Framework: https://osfio/z67wb.

Project description:BackgroundImproving the design of family planning (FP) interventions is essential to advancing gender equality, maternal health outcomes, and reproductive autonomy for both men and women. While progress has been made towards applying a rights-based approach to FP interventions in sub-Saharan Africa, the ethical implications of FP interventions has been underreported and underexplored. Several ethical challenges persist related to measuring success, choice, and target population.MethodsWe conducted a scoping review to understand if and how FP interventions published between 2000 and 2020 within sub-Saharan Africa address the ethical challenges raised within the literature. We identified a total of 1,652 papers, of which 40 were included in the review.ResultsOur review demonstrated that the majority of family planning interventions in sub-Saharan Africa place a strong emphasis, on measuring success through quantitative indicators such as uptake of modern contraception methods among women, specifically those that are married and visiting healthcare centres. They also tend to bias the provision of family planning by promoting long-acting reversible contraception over other forms of contraception methods potentially undermining individuals' autonomy and choice. The interventions in our review also found most interventions exclusively target women, not recognising the importance of gender norms and social networks on women's choice in using contraception and the need for more equitable FP services.ConclusionThe results of this review highlight how FP interventions measured success through quantitative indicators that focus on uptake of modern contraception methods among women. Utilising these measures makes it difficult to break away from the legacy of FP as a tool for population control as they limit the ability to incorporate autonomy, choice, and rights. Our results are meant to encourage members of the global family planning community to think critically about the ethical implications of their existing interventions and how they may be improved. More public health and policy research is required to assess the effect of applying the new indicators with the FP community as well as explicitly outlining monitoring and evaluation strategies for new interventions to allow for programme improvement and the dissemination of lessons learned.

Dataset Information

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

Introduction

Methods

Discussion

Publications

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

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