scholarly journals Towards a feminist philosophy of engagements in health-related research

2021 ◽  
Vol 6 ◽  
pp. 58
Author(s):  
Sonja Erikainen ◽  
Ellen Stewart ◽  
Sarah Chan ◽  
Sarah Cunningham-Burley ◽  
Sophie Ilson ◽  
...  
Keyword(s):  
Knowledge Production ◽  
Health Research ◽  
Research Participation ◽  
Feminist Philosophy ◽  
Institutional Frameworks ◽  
Health Related Research ◽  
Health Related ◽  
Methodological Approaches ◽  
The Uk ◽  
Normative Considerations

Engagement with publics, patients, and stakeholders is an important part of the health research environment in the UK and beyond today, and different ‘engaged’ health research modalities have proliferated in recent years. Yet, the conceptual landscape currently surrounding engagement is contested. There is no consensus on what, exactly, ‘engaging’ means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which ‘value’ can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and kinds of value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. This will enable a synergy of empirical, epistemic, and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.

Using focus groups

2015 ◽  
Author(s):  
Sue Wilkinson
Keyword(s):  
Focus Groups ◽  
Health Research ◽  
Related Research ◽  
Health Related Research ◽  
Health Related ◽  
Ideal Method

This chapter presents an overview of the main uses of focus groups in health research, and argues that focus groups are an ideal method for gaining access to participants’ own meanings, using with examples from health-related research.

scholarly journals PILIRIQATIGIINNIQ ‘Working in a collaborative way for the common good’

2014 ◽  
Vol 7 (1) ◽  
pp. 1-14 ◽  
Author(s):  
Gwen Healy ◽  
Andrew Tagak Sr.
Keyword(s):  
Indigenous Knowledge ◽  
Health Research ◽  
Common Good ◽  
Ways Of Knowing ◽  
Indigenous Communities ◽  
The Arctic ◽  
The Common Good ◽  
Health Related Research ◽  
Health Related ◽  
The Common

Increasing attention on the Arctic has led to an increase in research in this area. Health research in Arctic Indigenous communities is also increasing as part of this movement. A growing segment of the research community is focused on explaining and understanding Indigenous knowledge and ways of knowing. Researchers have become increasingly aware that Indigenous knowledge must be perceived, collected and shared in ways that are unique to, and shaped by, the communities and individuals from which this knowledge is gathered. This paper adds to this body of literature to provide Inuit perspectives on health-related research epistemologies and methodologies, with the intent that it may inform health researchers with an interest in Arctic health. The Inuit concepts of inuuqatigiittiarniq (“being respectful of all people”), unikkaaqatigiinniq (story-telling), pittiarniq (“being kind and good”), and iqqaumaqatigiinniq (“all things coming into one”) and piliriqatigiinniq (“working together for the common good”) are woven into a responsive community health research model grounded in Inuit ways of knowing which is shared and discussed.

scholarly journals Participatory action research and oral history as natural allies in mental health research

2021 ◽  
pp. 146879412110399
Author(s):  
Verusca Calabria ◽  
Di Bailey
Keyword(s):  
Mental Health ◽  
Action Research ◽  
Participatory Action Research ◽  
Oral History ◽  
Health Research ◽  
Mental Health Research ◽  
Participatory Action ◽  
Mental Health Settings ◽  
Methodological Approaches ◽  
The Uk

This article explores the similarities and differences between oral history and participatory action research (PAR) as two qualitative research methods that both accord with an interpretivist paradigm. It examines how combining these two methodologies can benefit mental health research, offering opportunities for reflection and reciprocity. Drawing from the authors’ respective knowledge and experience of using oral history and PAR methods within social care and mental health settings in the UK, the article considers these opportunities in relation to key concepts, namely, the sharing of power, reciprocity and positionality that are inherent in both methodological approaches. The article concludes that PAR-led oral history offers a trans-disciplinary methodology that can offer fresh insights for improving practices and social outcomes and for reducing inequalities.

scholarly journals Health research in the state of Odisha, India: a 10-year bibliometric analysis (2011-2021)

2021 ◽  
Author(s):  
Jaya singh Kshatri ◽  
Parmeshwar Satpathy ◽  
Sumita Sharma ◽  
Trilochan Bhoi ◽  
Smruti Prakash Mishra ◽  
...  
Keyword(s):  
Bibliometric Analysis ◽  
Low Income ◽  
Health Research ◽  
Research Priorities ◽  
The State ◽  
Original Research ◽  
Funding Sources ◽  
Publication Number ◽  
Health Related Research ◽  
Health Related

Background: Bibliometric analyses are an important tool for evaluating health research outputs in terms of their distribution, trends, actors, focus, and funding sources. The transition from Millennium to sustainable development goals have led to a gradual shift in health policy and possibly the research priorities of low-income settings in the Empowered Action Group (EAG) states, lagging in socio-economic and health parameters, also ranking low on innovations and research. This study was aimed to describe the recent trends, quantity, type, focus and sources of health-related research in the EAG state of Odisha, India.Materials and Methods: Peer reviewed published original research articles which were related to human health, published between 1st Jan 2011 and 31st Dec 2020 and where the study population were residents of Odisha, or study site was in Odisha, exclusively or partially were analyzed. Publication characteristics were tabulated, including title, journal name, open access, date of publication, number of authors, designation of the authors, number of institutes involved, name of institute of first author. Details of study setting, study site, ethical clearance, funding source were also collected.Results: The study identified 2285 articles from database searches and included 666 articles after screening for the bibliometric analysis. Most of the manuscripts had between 3-6 authors (43.5%). Two institutes from the state, ICMR-RMRC and KIIT, together contributed to over 22.4% of the published manuscripts as lead authors. Nearly 45.9% studies were community based while 45.3% were hospital based. While most of the published work was on infectious diseases, the proportion came down with time between 2011 and 2020. An overwhelming majority of studies were observational in nature and less than 10% were experimental in design. Conclusions: The analysis shows a substantial increase in the number of publications in this decade. Priority setting of health care problems, increased funding and capacity building can give a much-necessitated impetus to more quality and evidence-based research for aiding policy implementation and improvement of overall health of Odisha.

Walking the Moral Tightrope: Respecting and Protecting Children in Health-Related Research

2002 ◽  
Vol 11 (3) ◽  
pp. 217-229 ◽  
Author(s):  
PAUL B. MILLER ◽  
NUALA P. KENNY
Keyword(s):  
Research Participation ◽  
Institutional Review Boards ◽  
Research Subjects ◽  
Related Research ◽  
Institutional Review ◽  
Regulatory Frameworks ◽  
Child Research ◽  
Health Related Research ◽  
Health Related ◽  
Scientific Questions

Special moral, regulatory, and scientific questions surround the inclusion of children in health-related research. These questions arise from a fundamental moral tension between the obligation to expose children to research participation to ensure that they share in the benefits that arise from it and the obligation to protect them from the harms associated with their inappropriate involvement in research. This tension is felt in the development of moral and regulatory frameworks for the protection of child research subjects and in the implementation and interpretation of these frameworks by institutional review boards (IRBs).

scholarly journals Enhanced patient research participation: a Photovoice study in Blantyre Malawi

2018 ◽  
Vol 8 (2) ◽  
pp. 171-174 ◽  
Author(s):  
Maya Jane Bates ◽  
Jane Ardrey ◽  
Treza Mphwatiwa ◽  
Stephen Bertel Squire ◽  
Louis Willem Niessen
Keyword(s):  
Palliative Care ◽  
Patient Involvement ◽  
Research Participation ◽  
Well Being ◽  
Care Staff ◽  
Community Based ◽  
Limited Participation ◽  
Health Related Research ◽  
Health Related ◽  
Participatory Analysis

ObjectivesPatient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities’ strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice.MethodsThirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited.ResultsProcedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate.ConclusionsIn this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation.

scholarly journals Including household effects in Big Data research: the experience of building a longitudinal residence algorithm using linked administrative data in Wales

2018 ◽  
Vol 3 (1) ◽  
Author(s):  
Karen Susan Tingay ◽  
Matthew Roberts ◽  
Charles B.A. Musselwhite
Keyword(s):  
Large Scale ◽  
Emotional Health ◽  
Demographic Data ◽  
Population Level ◽  
Chronically Ill ◽  
Household Composition ◽  
Health Related Research ◽  
Health Related ◽  
The Uk ◽  
The Impact

The effect of the wider social-environment on physical and emotional health has long been an area of study. Extrapolating the impact of the individual's immediate environment, such as living with a smoker or caring for a chronically-ill child, would potentially reduce confounding effects in health-related research. Surveys, including the UK Census, are beginning to collect data on household composition. However, these surveys are expensive, time consuming, and, as such, are only completed by a subsection of the population. Large-scale, linked databanks, such as the SAIL Databank at Swansea University, which hold routinely collected secondary use clinical and administrative datasets, are broader in scope, both in terms of the nature of the data held, and the population. The SAIL databank includes demographic data and a geographic indicator that makes it possible to identify groups of people that share accommodation, and in some cases the familial relationships among them. This paper describes a method for creating households, including considerations for how that information can be securely shared for research purposes. This approach has broad implications in Wales and beyond, opening up possibilities for more detailed population-level research that includes consideration of residential social interactions.

Barriers to African American and Other Minority Population Participation in Genomic-Related Health Research: A Systematic Literature Review

2021 ◽  
Author(s):  
Karyn Onyeneho ◽  
Linda Thompson ◽  
Priscilla Okunji ◽  
Thomas Fungwe ◽  
Gina Brown
Keyword(s):  
Health Disparities ◽  
Health Research ◽  
Cultural Beliefs ◽  
Premature Death ◽  
Minority Population ◽  
Related Research ◽  
Marginalized Communities ◽  
Face To Face ◽  
Health Related Research ◽  
Health Related

<p><a>The paucity of data for African Americans (AAs) participating in health-related research (e.g., genomic health research) is often attributed to difficulty in recruitment and retention. The COVID-19 pandemic, which has resulted in hundreds of thousands of deaths, particularly in AA communities, has amplified the problem. Reasons for not participating remain unclear and may account for health disparities observed in these communities. Failure and unwillingness to participate in research in general influences health disparities, which may lead to missed economic opportunities, inequalities, poor health, reduced quality of life, and premature death.</a> This review assesses barriers to acceptance of genomic-related health research among AAs and other marginalized populations. To investigate barriers to participating in health-related research involving deoxyribonucleic acid (DNA), 38 studies published in PubMed and Scopus between January 2008 and December 2018 were reviewed. Results were based on feedback collected by trained research assistants and phlebotomists during structured group, face-to-face, and telephonic<b>. </b>Reason for non-participation in genomic related research were pervasive and included perceived and/or actual experiences of mistrust and deceptiveness by investigators, misuse of genomic data, unethical research practices, healthcare system distrust, privacy concerns, socioeconomic influences, cultural beliefs, and other influences associated with psychosocial factors.<b> </b>These results are consistent with diminishing participation of AAs in DNA-related research attributable to a range of factors leading to health disparities. Addressing these factors among marginalized communities, and AAs who have not largely been represented in DNA-related research, will guide insights on how to conduct research in these communities.<b></b></p>

Developing a competency framework for health research ethics education and training

2021 ◽  
pp. medethics-2021-107237
Author(s):  
Sean Tackett ◽  
Jeremy Sugarman ◽  
Chirk Jenn Ng ◽  
Adeeba Kamarulzaman ◽  
Joseph Ali
Keyword(s):  
Research Ethics ◽  
Health Research ◽  
Formal Education ◽  
Ethics Education ◽  
Competency Framework ◽  
Competency Development ◽  
Competency Frameworks ◽  
Health Related Research ◽  
Health Related ◽  
Training Programmes

Health research ethics (HRE) training programmes are being developed and implemented globally, often with a goal of increasing local capacity to assure ethical conduct in health-related research. Yet what it means for there to be sufficient HRE capacity is not well-defined, and there is currently no consensus on outcomes that HRE training programmes should collectively intend to achieve. Without defining the expected outcomes, meaningful evaluation of individual participants and programmes is challenging. In this article, we briefly describe the evolution of formal education in HRE, articulate the need for a framework to define outcomes for HRE training programmes, and provide guidance for developing HRE competency frameworks that define outcomes suited to their contexts. We detail critical questions for developing HRE competency frameworks using a six-step process: (1) define the purposes, intended uses and scope of the framework; (2) describe the context in which practice occurs; (3) gather data using a variety of methods to inform the competency framework; (4) translate the data into competencies that can be used in educational programmes; (5) report on the competency development process and results and (6) evaluate and update the competency framework. We suggest that competency frameworks should be feasible to develop using this process, and such efforts promise to contribute to programmatic advancement.

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