Dataset Information

Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines.

ABSTRACT:

Background

Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology-based interventions can lead to the implementation of faulty and less suitable technology.

Objective

This systematic review aims to evaluate current approaches and create best practice guidelines for involving people with dementia in developing technology-based interventions.

Methods

A systematic search was conducted in January 2019 in the following databases: EMBASE (Excerpta Medica database), PsycINFO, MEDLINE (Medical Literature Analysis and Retrieval System Online), CINAHL (Cumulated Index to Nursing and Allied Health Literature), and Web of Science. The search strategy included search terms in 3 categories: dementia, technology, and involvement in development. Narrative synthesis wove the evidence together in a structured approach.

Results

A total of 21 studies met the inclusion criteria. Most studies involved people with dementia in a single phase, such as development (n=10), feasibility and piloting (n=7), or evaluation (n=1). Only 3 studies described involvement in multiple phases. Frequently used methods for assessing involvement included focus groups, interviews, observations, and user tests.

Conclusions

Most studies concluded that it was both necessary and feasible to involve people with dementia, which can be optimized by having the right prerequisites in place, ensuring that technology meets standards of reliability and stability, and providing a positive research experience for participants. Best practice guidelines for the involvement of people with dementia in developing technology-based interventions are described.

SUBMITTER: Rai HK

PROVIDER: S-EPMC7746489 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines.

Rai Harleen Kaur HK Cavalcanti Barroso Aline A Yates Lauren L Schneider Justine J Orrell Martin M

Journal of medical Internet research 20201203 12

<h4>Background</h4>Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology-based interventions can lead to the implementation of faulty and less suitable technology.<h4>Objective</h4>This systematic review aims to evaluate current approaches and create best practice guidelines for involving pe ...[more]

PMID: 33270034

Similar Datasets

Project description:BackgroundObjective structured clinical examinations (OSCEs) have been used for many years within healthcare programmes as a measure of students' and clinicians' clinical performance. OSCEs are a form of simulation and are often summative but may be formative. This educational approach requires robust design based on sound pedagogy to assure practice and assessment of holistic nursing care. As part of a project testing seven OSCE best practice guidelines (BPGs) across three sites, the BPGs were applied to an existing simulation activity. The aim of this study was to determine the applicability and value of the OSCE BPGs in an existing formative simulation.MethodsA mixed methods approach was used to address the research question: in what ways do OSCE BPGs align with simulations. The BPGs were aligned and compared with all aspects of an existing simulation activity offered to first-year nursing students at a large city-based university, prior to their first clinical placement in an Australian healthcare setting. Survey questions, comprised of Likert scales and free-text responses, used at other sites were slightly modified for reference to simulation. Students' opinions about the refined simulation activity were collected via electronic survey immediately following the simulation and from focus groups. Template analysis, using the BPGs as existing or a priori thematic codes, enabled interpretation and illumination of the data from both sources.ResultsFew changes were made to the existing simulation plan and format. Students' responses from surveys (n = 367) and four focus groups indicated that all seven BPGs were applicable for simulations in guiding their learning, particularly in the affective domain, and assisting their perceived needs in preparing for upcoming clinical practice.DiscussionSimilarities were found in the intent of simulation and OSCEs informed by the BPGs to enable feedback to students about holistic practice across affective, cognitive and psychomotor domains. The similarities in this study are consistent with findings from exploring the applicability of the BPGs for OSCEs in other nursing education settings, contexts, universities and jurisdictions. The BPGs also aligned with other frameworks and standards often used to develop and deliver simulations.ConclusionsFindings from this study provide further evidence of the applicability of the seven OSCE BPGs to inform the development and delivery of, in this context, simulation activities for nurses. The manner in which simulation is offered to large cohorts requires further consideration to meet students' needs in rehearsing the registered nurse role.

Project description:Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.

Project description:BackgroundThere is growing global evidence on the adoption and effectiveness of eHealth (including mobile health and telehealth) by First Nation peoples including Aboriginal and Torres Strait Islander people. Although there are frameworks to guide eHealth development, implementation, and evaluation, it is unknown whether they adequately encapsulate the health, cultural, and community-related priorities of Aboriginal and Torres Strait Islander people.ObjectiveThe aim of this research program is to prepare a best practice framework that will guide the co-design, implementation, and evaluation of culturally safe eHealth interventions within existing models of health care for Aboriginal and Torres Strait Islander people. The framework will be a synthesis of evidence that represents best practices in eHealth, as determined by Aboriginal and Torres Strait Islander people.MethodsResearch activities to develop the best practice framework will occur in stepped but overlapping qualitative research phases with governance from an existing multiagency research collaboration (the Collaboration). The research protocol has been informed by key research frameworks such as the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) and Developers of Health Research Reporting Guidelines. The seven phases of research will include the following: systematic literature review, scoping review, theme development, theme consultation, Delphi processes for expert reviews, and dissemination.ResultsMembers of the Collaboration conceived this research program in August 2020, and a draft was produced in June 2021 with subsequent funding obtained in July 2021. The Collaboration approved the protocol in December 2021. Results for several research phases of the best practice framework development are expected by January 2023, commencing with the systematic literature review and the scoping review.ConclusionsThe research program outlined in this protocol is a timely response to the growing number of eHealth interventions with Aboriginal and Torres Strait Islander people. A best practice framework is needed to guide the rigorous development and evaluation of eHealth innovations to promote genuine co-design and ensure cultural safety and clinical effectiveness for Aboriginal and Torres Strait Islander people.International registered report identifier (irrid)DERR1-10.2196/34904.

Project description:BackgroundIndividuals with Friedreich ataxia (FRDA) can find it difficult to access specialized clinical care. To facilitate best practice in delivering healthcare for FRDA, clinical management guidelines (CMGs) were developed in 2014. However, the lack of high-certainty evidence and the inadequacy of accepted metrics to measure health status continues to present challenges in FRDA and other rare diseases. To overcome these challenges, the Grading of Recommendations Assessment and Evaluation (GRADE) framework for rare diseases developed by the RARE-Bestpractices Working Group was adopted to update the clinical guidelines for FRDA. This approach incorporates additional strategies to the GRADE framework to support the strength of recommendations, such as review of literature in similar conditions, the systematic collection of expert opinion and patient perceptions, and use of natural history data.MethodsA panel representing international clinical experts, stakeholders and consumer groups provided oversight to guideline development within the GRADE framework. Invited expert authors generated the Patient, Intervention, Comparison, Outcome (PICO) questions to guide the literature search (2014 to June 2020). Evidence profiles in tandem with feedback from individuals living with FRDA, natural history registry data and expert clinical observations contributed to the final recommendations. Authors also developed best practice statements for clinical care points that were considered self-evident or were not amenable to the GRADE process.ResultsSeventy clinical experts contributed to fifteen topic-specific chapters with clinical recommendations and/or best practice statements. New topics since 2014 include emergency medicine, digital and assistive technologies and a stand-alone section on mental health. Evidence was evaluated according to GRADE criteria and 130 new recommendations and 95 best practice statements were generated.Discussion and conclusionEvidence-based CMGs are required to ensure the best clinical care for people with FRDA. Adopting the GRADE rare-disease framework enabled the development of higher quality CMGs for FRDA and allows individual topics to be updated as new evidence emerges. While the primary goal of these guidelines is better outcomes for people living with FRDA, the process of developing the guidelines may also help inform the development of clinical guidelines in other rare diseases.

Dataset Information

Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines.

Background

Objective

Methods

Results

Conclusions

Publications

Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets