scholarly journals The use of a participatory patient engagement research project to meaningfully engage those with lived experience of diabetes and homelessness

2021 ◽  
Author(s):  
David J.T. Campbell ◽  
Rachel B. Campbell ◽  
Anna DiGiandomenico ◽  
Matthew Larsen ◽  
Marleane A. Davidson ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
Participatory Research ◽  
Patient Engagement ◽  
List Type ◽  
Research Projects ◽  
Community Members ◽  
Disadvantaged Populations ◽  
Socially Disadvantaged ◽  
Academic Researchers ◽  
Group Members

AbstractIntroductionParticipatory research is a study method that engages patient partners in research programs from study design through to completion. It has seldom been used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a patient-engagement project and to highlight the experiences of patient participants and academic researchers.Research Design & MethodsWe recruited PWLEH and diabetes in Toronto, Canada to be patient partners. Group members were asked to commit to attending biweekly meetings. We undertook two major research projects: Concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed methods design to evaluate their experience.ResultsA diverse group of 8 PWLEH had an average attendance of 82% over 21 meetings – despite this success, we encountered a number of challenges to conducting this research. Group members reported that participation improved their ability to be self-advocates in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policy makers.ConclusionsThe use of participatory patient engagement research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, group members contributed in meaningful ways and also valued the experience.What is already known about this subject?Patient oriented research is important to public health research as it helps with the development of relevant interventions and knowledge translation.Participatory research is a form of research that maximally involves patients in all phases of the research.Participatory research has rarely been used in research on diabetes and diabetes-related interventions.What are the new findings?Patient engagement is important for studies involving socially disadvantaged populations with diabetes.Community members involved in research contribute substantially to research projects but also find the experience to be enriching and valuable.How might these results change the focus of research or clinical practice?Those who conduct research with and develop programs to provide diabetes care, especially to socially disadvantaged populations, should involve community members through all phases of the process to ensure the intervention is maximally useful for patients.

Understanding Women's Work: Steps toward Transformation—an Introduction

2007 ◽  
Vol 17 (2) ◽  
pp. 53-56 ◽  
Author(s):  
Ana María Seifert ◽  
Karen Messing
Keyword(s):  
Social Movements ◽  
Participatory Research ◽  
Working Conditions ◽  
Women's Work ◽  
Research Projects ◽  
Community Members ◽  
Women’S Work ◽  
Ultimate Cause ◽  
To Come ◽  
Work And Health

A session at the 2005 Delhi Congress on Women, Work and Health was entitled “Social movements and research on women, work and health: How can researchers and community members work together on current problems?” and described researcher-worker collaboration to gain recognition for the constraints and requirements of women's jobs. Suffering in the workplace may appear to come primarily from such visible aggressors as toxins and heavy weights, but its ultimate cause is the powerlessness, isolation, and denigration that sap workers’ ability to fight back. Participatory research projects described here have promoted solidarity and encouraged the transformation of working conditions.

scholarly journals Catalyzing Action on First Nations Respiratory Health Using Community-based Participatory Research: Integrated Knowledge Translation through Strategic Symposia

2017 ◽  
Vol 2 (1) ◽  
pp. 57-70
Author(s):  
Tarun Reddy Katapally ◽  
Sylvia Abonyi ◽  
Jo-Ann Episkenew ◽  
Vivian Ramsden ◽  
Chandima Karunanayake ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
First Nations ◽  
Participatory Research ◽  
Respiratory Health ◽  
Community Based Participatory Research ◽  
Integrated Knowledge Translation ◽  
Community Members ◽  
Community Based ◽  
Nations Community ◽  
Integrated Knowledge

 Assess, Redress, Re-assess: Addressing Disparities in Respiratory Health Among First Nations is an ongoing community-based participatory research initiative involving two First Nations communities in Saskatchewan. The initiative’s rationale is grounded in the ethos of transformative community-based participatory research and facilitated through integrated knowledge translation with the aim of building community capacity. The initiative’s goal was to engage community members to actively participate in all research phases, from the development of the research questions to dissemination of results and evaluation of community-chosen interventions that evolved from the results. After baseline assessment of predictors and indicators of respiratory health, a program of integrated knowledge translation was adopted. As part of this program, a community-researcher collaboration was put in place that produced two knowledge translation symposia. The two symposia have brought together First Nations community members, interdisciplinary researchers, federal and provincial policy makers, and multiple Aboriginal organizational stakeholders. The symposia provided a pathway for knowledge synthesis and sharing to ultimately integrate knowledge into practice and enable First Nations’ community capacity building in addressing and redressing critical respiratory health issues. This article delineates the processes involved in developing this model of integrated knowledge translation and highlights the continuing engagement with the participating communities supported by Knowledge Translation (KT) Symposia.

scholarly journals Using a community-based participatory research approach to meaningfully engage those with lived experience of diabetes and homelessness

2021 ◽  
Vol 9 (1) ◽  
pp. e002154
Author(s):  
David J T Campbell ◽  
Rachel B Campbell ◽  
Anna DiGiandomenico ◽  
Matthew Larsen ◽  
Marleane A Davidson ◽  
...  
Keyword(s):  
Lived Experience ◽  
Participatory Research ◽  
Positive Impact ◽  
Community Based Participatory Research ◽  
Research Approach ◽  
Services Research ◽  
Academic Researchers ◽  
Group Members ◽  
Participatory Research Methods ◽  
Design And Methods

IntroductionParticipatory research is a study method that engages patients in research programs, ideally from study design through to dissemination. It is not commonly used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a participatory research project and to highlight the experiences of both patient co-researchers and academic researchers.Research design and methodsWe recruited people with lived experience of homelessness (PWLEH) and diabetes in Toronto, Canada to become patient co-researchers. They were asked to commit to attending biweekly meetings. We undertook two major research projects: concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed-methods design to evaluate their experience.ResultsA diverse group of eight PWLEH had an average attendance of 82% over 21 meetings—despite this success, we encountered a number of challenges of conducting this research: funding, ethics approval and recruitment were particularly difficult. Group members reported that participation improved their ability to self-advocate in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policymakers.ConclusionsThe use of participatory research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, co-researchers contributed in meaningful ways and also valued the experience.

scholarly journals Patient participation in ERS guidelines and research projects: the EMBARC experience

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 194-207 ◽  
Author(s):  
James D. Chalmers ◽  
Alan Timothy ◽  
Eva Polverino ◽  
Marta Almagro ◽  
Thomas Ruddy ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Engagement ◽  
Clinical Guidelines ◽  
Patient Involvement ◽  
Research Collaboration ◽  
Clinical Care ◽  
List Type ◽  
Research Projects ◽  
Educational Activities ◽  
Specific Patient

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme.From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies.Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement.Educational aimsTo understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician’s perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient’s perspective, in order to meaningfully involve patients in clinical projects.

scholarly journals Menopause experience in First Nations women and initiatives for menopause symptom awareness; a community-based participatory research approach

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Beate C. Sydora ◽  
Bonny Graham ◽  
Richard T. Oster ◽  
Sue Ross
Keyword(s):  
Quality Of Life ◽  
Knowledge Translation ◽  
First Nations ◽  
Participatory Research ◽  
Family Members ◽  
Community Based Participatory Research ◽  
Community Members ◽  
Community Based ◽  
Menopause Symptom

Abstract Background Little research has been conducted about menopause in First Nations women. In response to the wishes of Cree women living in Maskwacis, Alberta, to start a dialogue on menopause, we undertook community-based participatory research (CBPR) to explore menopause experience and raise awareness of menopause symptoms in the community. Methods The research adhered to the principles of Ownership, Control, Access and Possession (OCAP™) and was guided by the interest of the participating women. Local women (target age 40–65 years) were invited to participate in workshops using word-of-mouth and community posters in health centers. Five research workshops were held in community settings, attended by experienced women’s health researchers and consenting women. The participants guided the informal discussions. They also completed questionnaires which included menopause-related quality of life. The researchers used extensive hand-written field notes to record data; qualitative content analysis was applied to identify themes. Simple descriptive analysis was used for the questionnaire results. The findings were discussed at a community feedback session and laid the basis for further knowledge translation initiatives. Results The five workshops included a total of 37, mostly post-menopausal women with 6–11 women/workshop. The main discussion themes were: "experiences of menopause symptoms" including their impact on quality of life; "menopause knowledge prior to their own experience" with most women feeling that they had insufficient information before menopause; "menopause symptom management" which mainly included practical strategies; "impact of menopause on family members" which was of prime concern with uncontrollable mood changes affecting the whole family and sometimes causing matrimonial disharmony. Questionnaire responses corroborated the workshop discussions. Knowledge translation of the research findings produced two information pamphlets specifically for the Maskwacis community: one for husband/partner, the other for women and family members. These pamphlets have been distributed in all areas of the community. Conclusion This CBPR project addressed a topic identified by the community as being important. Community members developed informative pamphlets in response to the women’s concern of lack of understanding for menopause symptoms among families. This simple solution has been widely accepted by community members, opening the possibility of wider discussion about menopause.

scholarly journals A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS)

2021 ◽  
pp. 0272989X2110203
Author(s):  
Renata W. Yen ◽  
Jenna Smith ◽  
Jaclyn Engel ◽  
Danielle Marie Muscat ◽  
Sian K. Smith ◽  
...  
Keyword(s):  
Relative Risk ◽  
Health Inequalities ◽  
Data Extraction ◽  
Decision Aids ◽  
Mean Difference ◽  
Patient Decision Aids ◽  
Disadvantaged Populations ◽  
Socially Disadvantaged ◽  
Patient Decision ◽  
Intervention Trials

Background The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. Purpose To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions. Data Sources MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs. Study Selection Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations. Data Extraction Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist. Data Synthesis Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I2 = 0%]). PtDAs reduced decisional conflict (mean difference = −9.59; 95% CI −18.94, −0.24 [I2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI −0.22, 0.26 [I2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials. Limitations Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up. Conclusions PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective. [Box: see text]

scholarly journals Towards the Construction of Productive Interactions for Social Impact

2021 ◽  
Vol 13 (2) ◽  
pp. 485
Author(s):  
Blanca L. Díaz Mariño ◽  
Frida Carmina Caballero-Rico ◽  
Ramón Ventura Roque Hernández ◽  
José Alberto Ramírez de León ◽  
Daniel Alejandro González-Bandala
Keyword(s):  
Social Impact ◽  
Ecological Systems ◽  
Research Projects ◽  
Structured Interviews ◽  
Government Officials ◽  
Community Members ◽  
Project Duration ◽  
The Social ◽  
The One ◽  
Different Levels

Understanding the value of research for society has become a priority, and several methodologies have been developed to assess the social impact of research. This study aimed to determine how productive interactions are developed during the execution of research projects. A retrospective study was conducted on 33 projects from 1999 to 2020. Semi-structured interviews with the technical managers were conducted to analyze how different actors of the project—researchers, government officials, and civil society and private sector stakeholders—were involved, illustrating how productive interactions occur in specific biodiversity contexts. The results revealed different levels and intensities of productive interactions; on the one hand, three projects involved all actors; eight involved researchers outside the institution; and 25 involved community members. The number of participants ranged from 2 to 37. All research evaluated had a disciplinary orientation. The type and time of interactions with other interested parties depended on the amount of funding, project type, project duration, and, significantly, on the profile of the technical manager. The importance of assessing and valuing productive interactions was identified as a fundamental element in promoting the social impact of research, as well as integrating inter- or multidisciplinary projects that impact the conservation of socio-ecological systems.

The Afterlives of Violent Images

2015 ◽  
Vol 8 (2-3) ◽  
pp. 327-354
Author(s):  
Nadia Yaqub
Keyword(s):  
Social Media ◽  
Collective Memory ◽  
Refugee Camp ◽  
The Other ◽  
Community Members ◽  
Group Members ◽  
Violent Images

This article examines the posting of photographs on two Facebook groups created by survivors of the 1976 fall of the Tal al-Zaʾtar refugee camp and their descendants. What happens to photographs as they circulate through these particular social media groups, and what relations do people (including photographed subjects who appear in images of atrocity and trauma) create with such images as they circulate in new ways? How are they mobilized through social media to create and sustain collective memory? I argue that by addressing the yearning to discover, document and sustain networks of affiliation and association on one hand and a shared geography, lost in 1976 and virtually reconstructed through members’ activities on the sites on the other, group members appeal in complex ways to both indexical and iconic qualities of photographs, thereby allowing for the creative engagement with a collective past for the needs of community members in the present.

scholarly journals Book Review: Keys to Running Successful Research Projects: All the Things They Never Teach You

2019 ◽  
Vol 58 (4) ◽  
pp. 258
Author(s):  
Patrick Baumann
Keyword(s):  
Doctoral Students ◽  
Field Research ◽  
Early Career ◽  
Academic Experience ◽  
Research Projects ◽  
Academic Researchers

In any field, research is a process involving many steps and can feel overwhelming even to experienced researchers, with many researchers wondering where to start. As a means to combat this challenge, <em>Keys to Running Successful Research Projects: All the Things They Never Teach You</em> by Katherine Christian is a how-to manual for academic researchers. It accounts for those in every level of the academic experience, from doctoral students to early career professionals to research leaders. However, the focus is on early career professionals, especially in the sciences.

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