Patient engagement in research related to dementia: A scoping review

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 944-975 ◽  
Author(s):  
Jennifer Bethell ◽  
Elana Commisso ◽  
Hanne Marie Rostad ◽  
Martine Puts ◽  
Jessica Babineau ◽  
...  
Keyword(s):  
Lived Experience ◽  
Scoping Review ◽  
Patient Engagement ◽  
Personal Experience ◽  
Research Process ◽  
Barriers And Enablers ◽  
Care Partners ◽  
Patient Engagement In Research ◽  
Almost All ◽  
The Impact

Patient ‘engagement’ or ‘involvement’ in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact – on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society – is still needed.

scholarly journals Young people’s advisory groups in health research: scoping review and mapping of practices

2020 ◽  
pp. archdischild-2020-320452 ◽  
Author(s):  
Elise Sellars ◽  
Gabriela Pavarini ◽  
Daniel Michelson ◽  
Cathy Creswell ◽  
Mina Fazel
Keyword(s):  
Scoping Review ◽  
Health Research ◽  
Empirical Studies ◽  
Research Process ◽  
Primary Data ◽  
Research Activity ◽  
Level Of Involvement ◽  
Additional Information ◽  
Advisory Groups ◽  
The Impact

BackgroundYoung people’s advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs.MethodTo address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG.FindingsOf all studies that collected primary data from persons aged 12–18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs.InterpretationRecommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

Taught resilience programmes: a case study from the perspective of employees of a large pharmaceutical company based in the UK

2020 ◽  
Vol 2 (2) ◽  
pp. 111-129
Author(s):  
Frances Costello
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interviews ◽  
Content Type ◽  
Individual Resilience ◽  
Personal Resilience ◽  
The Uk ◽  
Almost All ◽  
The Impact

PurposeResearch was undertaken to understand whether taught resilience programmes which highlight the protective factors of resilience would impact individual resilience outcomes. The research focussed on specific resilience dimensions, change agility, physical, emotional and mental resilience, purpose in life and recovery; in an attempt to bridge the gap in understanding whether it is possible through taught programmes to improve resilience through the creation of new habits.Design/methodology/approachThe research was conducted using interpretative phenomenological analysis methods and used semi-structured interviews with 12 participants to understand participants lived experience of a one-day personal resilience programme, conducted within a private global manufacturing organisation.FindingsThe research found that all 12 participants interviewed 12–18 months post-programme made sustainable habits changes increasing personal resilience levels. Participants built new habits into their everyday lives, in the physical dimension exercising more regularly, taking breaks, changes in nutrition and creating better sleep patterns. Through increased understanding of emotional intelligence participants were able to react more favourably to adverse situations and through mental increased resilience focus achieve work and home priorities. In understanding the change journey participants found that they were able to move more quickly through the change cycle. Almost all participants found understanding their life purpose difficult and were not able to give a conclusive answer to what this might be, they found that attending the programme helped reflection in this dimension.Originality/valueThe paper includes an overview of previous resilience research but differs in its examination of the impact of a specific taught resilience programme in a large private sector organisation using IPA methodology.

scholarly journals The Impact of Undergraduate Research Journals on the Scholarly World: Present but Small

2020 ◽  
Vol 10 (11) ◽  
pp. 338
Author(s):  
Rosa Gavey ◽  
Amanda Harper ◽  
Mary F. Hill ◽  
Anthony Phillips ◽  
Gavin T. L. Brown
Keyword(s):  
Scoping Review ◽  
Undergraduate Research ◽  
Citation Rate ◽  
Systematic Search ◽  
Google Scholar ◽  
H Index ◽  
Thematic Review ◽  
Almost All ◽  
The Impact ◽  
Journal Impact

Background: Undergraduate research journals are a popular mechanism for inducting students into research, communication, and publication facets of academia. A thematic review of 17 review papers found little evidence for journal impact. Methods: A scoping review identified 91 journals. A systematic search identified the journal website, its International Standard Serial Number (if any), its citation rate on Google Scholar, its start year and end year (if applicable). Results: Seventy-five journals had both a Google Scholar h-index and a discoverable start year. Sixty-eight had been cited one or more times. The median h-index was 2, mode was h = 1, and the average h-index = 4.38. Correlation with start year was not statistically significant, neither was content field of journals. Conclusions: Surprisingly, almost all currently published journals have been cited at least once, showing that undergraduate research journals have some impact on the scholarly world. Further analyses are suggested to examine career impact of publication on students and faculty.

Volunteerism as adolescent health promotion asset: a scoping review

2019 ◽  
Vol 35 (3) ◽  
pp. 610-623
Author(s):  
Naia Hernantes ◽  
María J Pumar-Méndez ◽  
Olga López-Dicastillo ◽  
Andrea Iriarte ◽  
Agurtzane Mujika
Keyword(s):  
Health Promotion ◽  
Scoping Review ◽  
Social Cognitive ◽  
Risky Behaviors ◽  
The United States ◽  
Positive Development ◽  
Cochrane Library ◽  
Healthy Development ◽  
Almost All ◽  
The Impact

Abstract The Aim of this scoping review was to explore the available literature on volunteerism in adolescence and the benefits that this activity may report in their healthy development, from a salutogenic perspective. Searches were conducted in Pubmed, Cinahl, PsycINFO and Cochrane Library home databases; 15 articles were selected. Almost all of the studies were conducted in the United States between 1990 and 2000, primarily developed by psychologists and sociologists. The impact of volunteering was reflected in aspects that can be classified based on Lerner's dimensions of the PYD model. Volunteer activities promote an Improved academic, social, cognitive, and vocational competence in adolescents. An increase in conflict resolution capacity, leadership and personal agency, as well as improved pro-social attitudes and relationships with adults and peers, all of which contributed to their self-identification with the community. Moreover, increased positive development of adolescents reduces the rates of risky behaviors. Volunteerism may represent an opportunity for health promotion in adolescence. The concept of volunteering as an asset for health promotion during adolescence evokes the need to adopt and favor this view with regard to key areas of study associated with this stage such as education and health. Teams that work in community health, especially those in primary care, should recognize and value existing volunteer groups as an asset to promote the healthy development of adolescents. Friendlier health services should be encouraged that include comprehensive services from within educational institutions to community actions.

scholarly journals Engaging Those Living With Moderate to Severe TBI and Their Caregivers in Research

2021 ◽  
Vol 8 ◽  
pp. 237437352199885
Author(s):  
Nathaniel V Mohatt ◽  
Carlee J Kreisel ◽  
Lisa A Brenner ◽  
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Patient Engagement ◽  
The United States ◽  
Research Process ◽  
Patient Centered ◽  
Research Engagement ◽  
Severe Tbi ◽  
Caregiver Needs ◽  
Patient Engagement In Research

Despite the fact that millions of individuals living in the United States are coping with disabilities associated with traumatic brain injury (TBI), limited work has explored strategies for patient engagement in research among those with such injuries. The Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL) brought together those living with TBI, caregivers, clinicians, researchers, and advocates with the goal of developing a new patient-centered research agenda. This platform was also used to explore strategies to engage those with moderate to severe TBI in the research process. The CRITICAL was formed of 6 survivors of moderate to severe TBI, 2 caregivers of survivors of moderate to severe TBI, and 8 TBI professionals. The CRITICAL identified 3 priority topic areas: Relationship Quality, Caregiver Needs, and Thriving. Furthermore, strategies associated with Communication, Preparation, and the Environment facilitated research engagement. Employing the strategies outlined in this article is expected to promote patient engagement in clinical research, which can improve patient-centered interventions and outcomes for individuals living with TBI.

scholarly journals How to engage patient partners in health service research: a scoping review protocol

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sarah Cecilie Tscherning ◽  
Hilary Louise Bekker ◽  
Tina Wang Vedelø ◽  
Jeanette Finderup ◽  
Lotte Ørneborg Rodkjær
Keyword(s):  
Health Service ◽  
Narrative Analysis ◽  
Scoping Review ◽  
Health Service Research ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Service Research ◽  
Review Protocol ◽  
The Impact

Abstract Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

scholarly journals A scoping review of COVID-19 experiences of people living with dementia

2021 ◽  
Vol 112 (3) ◽  
pp. 400-411
Author(s):  
Juanita-Dawne R. Bacsu ◽  
Megan E. O’Connell ◽  
Claire Webster ◽  
Lisa Poole ◽  
Mary Beth Wighton ◽  
...  
Keyword(s):  
Scoping Review ◽  
English Language ◽  
Neuropsychiatric Symptoms ◽  
Original Research ◽  
Inclusion Criteria ◽  
Letters To The Editor ◽  
People With Dementia ◽  
Care Partners ◽  
Services And Supports ◽  
The Impact

Abstract Objectives Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. Methods Following Arksey and O’Malley’s scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. Synthesis Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research. Factors such as living alone, having advanced dementia, and the length of confinement were found to exacerbate the impact of COVID-19. Conclusion Urgent action is needed to support people living with dementia and their care partners in the pandemic. With little access to supports and services, people with dementia and their care partners are currently at a point of crisis. Collaboration and more evidence-informed research are critical to reducing mortality and supporting people with dementia during the pandemic.

scholarly journals Meaning-making in occupational therapy interventions: a scoping review

2021 ◽  
Vol 29 ◽  
Author(s):  
Ana Carolina Carreira de Mello ◽  
Angélica da Silva Araujo ◽  
Ana Lucia Borges da Costa ◽  
Taís Quevedo Marcolino
Keyword(s):  
Occupational Therapy ◽  
Lived Experience ◽  
Scoping Review ◽  
Meaning Making ◽  
Essential Element ◽  
Future Research ◽  
Physical Environments ◽  
Therapy Interventions ◽  
Occupational Therapy Interventions ◽  
The Impact

Abstract Introduction Meaning-making is an experience-centred process. It is an essential element for understanding the impact of occupational therapy interventions focused on fostering processes of becoming, one of the four integrated dimensions of meaningful occupation (along with doing, being, and belonging). Objective This paper aims to explore further some of the aspects that are essential for meaning-making in occupational therapy interventions. Method A scoping review guided by Arksey and O’Malley’s methodological framework was conducted. In the initial search, 528 articles were retrieved from three databases; 16 met the criteria for inclusion: articles in English, peer-reviewed, published between January 2008 and December 2017, that addressed some type of occupational therapy intervention, with data related to the meanings of the participants of the studies. Results The articles address a multiplicity of populations, services, and fields of practice, in qualitative studies, with methodologies that prioritise reflection on the lived experience. Thematic analysis highlights the interconnection between being, doing, and belonging to foster meaning-making; implications of professional actions; and meaning-making triggered by reflective processes. Conclusion Meaning-making demands reflection on the lived experience, and is influenced by human and physical environments. Both conditions/limitations and new skills/abilities enhance processes of meaning-making. Implications for future research are considered.

scholarly journals Effects of air-conditioning systems in the public areas of hospitals: A scoping review

2021 ◽  
Vol 149 ◽  
Author(s):  
Han Ting Wu ◽  
Qiu Shuang Li ◽  
Rong Chen Dai ◽  
Shan Liu ◽  
Li Wu ◽  
...  
Keyword(s):  
Scoping Review ◽  
Air Conditioning ◽  
Microbial Contamination ◽  
High Efficiency ◽  
Cross Sectional ◽  
The Public ◽  
Public Areas ◽  
Almost All ◽  
Air Conditioning Systems ◽  
The Impact

Abstract Almost all hospitals are equipped with air-conditioning systems to provide a comfortable environment for patients and staff. However, the accumulation of dust and moisture within these systems increases the risk of transmission of microbes and have on occasion been associated with outbreaks of infection. Nevertheless, the impact of air-conditioning on the transmission of microorganisms leading to infection remains largely uncertain. We conducted a scoping review to screen systematically the evidence for such an association in the face of the coronavirus disease 2019 epidemic. PubMed, Embase and Web of Science databases were explored for relevant studies addressing microbial contamination of the air, their transmission and association with infectious diseases. The review process yielded 21 publications, 17 of which were cross-sectional studies, three were cohort studies and one case−control study. Our analysis showed that, compared with naturally ventilated areas, microbial loads were significantly lower in air-conditioned areas, but the incidence of infections increased if not properly managed. The use of high-efficiency particulate air (HEPA) filtration not only decreased transmission of airborne bioaerosols and various microorganisms, but also reduced the risk of infections. By contrast, contaminated air-conditioning systems in hospital rooms were associated with a higher risk of patient infection. Cleaning and maintenance of such systems to recommended standards should be performed regularly and where appropriate, the installation of HEPA filters can effectively mitigate microbial contamination in the public areas of hospitals.

scholarly journals Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Jill D. Nault Connors ◽  
Marshall J. Conley ◽  
Laura S. Lorenz
Keyword(s):  
Emergency Department ◽  
Health System ◽  
Lived Experience ◽  
Outcomes Research ◽  
Research Process ◽  
Patient Centered ◽  
Emergency Department Care ◽  
System Leaders ◽  
Multi Stakeholder ◽  
The Impact

Abstract Background Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather than a heart problem. However, this research may not be a high priority due, in part, to a lack of awareness for the severity of anxiety symptoms and the impact of anxiety on peoples’ daily lives. In this commentary article, we highlight the use of Photovoice as a unique method to share patients’ lived experience of anxiety with providers, researchers, and health system leaders. Main text A brief background on Photovoice methods, the process of patient partner involvement in Photovoice, and the project’s Photovoice results (posters, photos and captions) is presented. Conclusion Photovoice achieved its intended effects of increasing awareness of all stakeholders about the burden of anxiety in patients’ lives and the imperative of improving emergency department care for anxiety. This resulted in increased participation in a multi-stakeholder research partnership, critical health system support that included costs to the health system associated with implementing interventions to be tested, and submission of a patient-centered outcomes research proposal that is currently under review. In addition, Photovoice had positive benefits for participants including a therapeutic effect, may have increased group cohesion, and empowerment of patients as partners in the research process.

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