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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature (Papers: Danielle Lake and Joel Wendland | 2018)0

Posted by Admin in on October 9, 2018
 

Abstract
This article extends recent discussions on the practical, epistemological, and ethical challenges of participatory action research (PAR) for community-engaged scholars through a cross-disciplinary literature review. It focuses on how practitioners across fields define power, engage with conventional research approval processes, and manage risk. The review demonstrates that PAR can be a valuable research approach for community-engaged scholars, but problematic practices and disparities must be addressed. For instance, although PAR practitioners consistently articulate a commitment to empowering the community and shifting structures of oppression, contradictions around how to define and respond to power, engage with standard IRB practices, and cope with high levels of risk are prevalent. We conclude by offering a set of recommendations, highlighting the need for more transparent and self-reflexive methods; transdisciplinary practices; metrics designed to assess risk, inclusion, and power-sharing; ongoing dialogues across disciplinary and institutional divides; and inclusive authorship and open-access publishing practices.

Keywords: participatory action research, ethical challenges, interdisciplinarity, institutional

LAKE, Danielle; WENDLAND, Joel. Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature. Journal of Higher Education Outreach and Engagement, [S.l.], v. 22, n. 3, p. 11-42, sep. 2018. ISSN 2164-8212. Available at: http://openjournals.libs.uga.edu/index.php/jheoe/article/view/2093>.

What information and the extent of information research participants need in informed consent forms: a multi-country survey (Juntra Karbwang, et al | 2018)0

Posted by Admin in on October 7, 2018
 

Abstract

Background
The use of lengthy, detailed, and complex informed consent forms (ICFs) is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in biomedical research.

Methods
This multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 (not important) to 5 (very important).

Results
Of the 2484 questionnaires distributed, 2113 (85.1%) were returned. The majority of respondents considered most elements required in the ICF to be ‘moderately important’ to ‘very important’ for their decision making (mean score, ranging from 3.58 to 4.47). Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF (mean score = 4.47, 4.47, and 4.45, respectively).

Conclusions
Research participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF.

Keywords
Consent forms, Informed consent, Disclosure, Information, Ethics, Research subjects

Karbwang, J., et al. (2018). “What information and the extent of information research participants need in informed consent forms: a multi-country survey.” BMC Medical Ethics 19(1): 79.
Publisher (Open Access): https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-018-0318-x#Decs

Current Perspectives on Research Ethics in Qualitative Research (Wolff-Michael Roth, Hella von Unger | 2018)0

Posted by Admin in on October 4, 2018
 

Abstract

In this article, we provide a brief introduction to the special issue on research ethics in qualitative research. We describe the general context within which our idea emerged to organize a special issue and present its design and, for purposes of transparency, some particulars with respect to the selection and review process. We sketch some of the common themes that are shared across parts of the paper set, including critical analysis of ethics codes and ethics reviews, the intricacies of informed consent, confidentiality and anonymity in qualitative research and questions of vulnerability.

Keywords
anonymity; confidentiality; ethics codes; ethics reviews; informed consent; knowledge/power; vulnerability

Roth, W., & von Unger, H. (2018). Current Perspectives on Research Ethics in Qualitative Research. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 19(3). doi:http://dx.doi.org/10.17169/fqs-19.3.3155
Publisher (Open Access): http://www.qualitative-research.net/index.php/fqs/article/view/3155

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‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children (Papers: Katherine Ann Thurber, et al | 2018)0

Posted by Admin in on September 20, 2018
 

Abstract
Background
Improving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study.

Methods
This mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes.

Results
The study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study.

Conclusions
Our findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations.

Keywords
Indigenous population, Longitudinal studies, Research design, Trust, Ethics, Motivation

Thurber, K. A., et al. (2018). “‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children.” International Journal for Equity in Health 17(1): 143.
Publisher (Open Access):  https://link.springer.com/article/10.1186/s12939-018-0858-1

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