Rebecca MalloyMSc. Candidate, CDE, SEDRD, University of Guelph

March 7th, 2016

Conducting research where everyone knows your name & game

Ethical Issues in aRural Context

Research Ethics

Objectives:

1. protect human participants in research

2. research is facilitated in a way that serves the best interests of all individuals, groups and society as a whole

3. examine research activities & projects for their ethical soundness. ie. risk, confidentiality and informed consent (Walton, n.d.)

“Research ethics is specifically interested in the analysis of ethical issues that are raised when people are involved as participants in research” (Walton, n.d.)

(Brown Bag Lunch on Research Ethics, 2016.)

Ethical Issues in a Rural Context

Some ethical issues that may arise when interacting with a rural community for research purposes:

Confidentiality/ Privacy: “A research project in a rural area “may be perceived as an invasion of privacy or as interference with local issues” (Talley, Chwalisz, Buckwalter, 2011, pg. 124).

Skepticism:In some rural communities individuals may feel over studied and feel that no tangible change is coming about.

Research & Outcomes:Your relationship with a community “has ethical implications based on your level of involvement with your interviewees; your level of involvement with their community and your research questions, process, and findings” (Ecosystems Workforce Program).

Whether you are an insider-researcher or an outsider-researcher, “in small communities where almost everyone knows one another, this can provide challenges for researchers” conducting a qualitative study because people are their data and they must talk to people, and people will talk to each other (White & Corbett, 2014).

Ethical Issues: Researching Rural Health Care

Rural health care is an under researched area and in need of more attention.

Researchers may find conducting research on rural health care difficult. A distrust of outsiders, threat of privacy, and high stress from primary caregivers can affect participation in the research study (Talley et al, 2011.)

Effects on rural health care:- Changing demographics, youth-out migration- Elderly living in rural areas due to affordability of living- Lack of transportation and distance from health care services - Lack of government spending

“Rural populations experience higher rates of illness, less access to health care resources, and lower rates of health insurance coverage than do urban populations.”(Averill, J.B, 2006, pg. 1).

(Mission Impossible? 2014.)

Community Based Participatory Research:An Approach to Address Ethical Issues

• Community Based Participatory Research “(CBPR) is a collaborative approach to research the equitably involves partners in the research process and recognizes the unique strengths that each brings. CDPR beings with a research topic of importance to the community with the goal of combining knowledge with action and achieving social-change to improve … outcomes.” (Talley, et al. 2011, pg. 125).

1. Recognize community as a unit with their own identity 2. Build on strength & resources of the community; leaders,

organizations, etc.3. Facilitate cooperative & collaborative relationships throughout each

phase of the research; allows everyone to contribute as equal members4. Integrate knowledge with action5. Promote empowerment6. A process that involves all steps of the research process including the

identification of the problem7. Address health from a positive & ecological perspective8. Disseminate research findings to all partners (Talley, et al. 2011.)

(Community Based Participatory Research, 2016.)

Community Based Participatory Research:Principles

Using CBPR to Research Rural Health Care“Community participation is proposed as a strategy to engage communities in developing locally

responsive healthcare” (Kenny, Hyett, Sawtell, Dickson-Swift, Farmer, & O’Meara, 2013).

Recruiting participants and gaining community cooperation in the study are all dependent on the research team’s initial approach (Talley, et al., 2011).

CBPR principle’s emphasize that the research team partner with local organizations and leaders.

Community leaders and organizations bring community members.

“In CBPR, community members are also involved in getting the word out about the research and promoting the use of the research findings. This involvement can help improve the quality of life and health care in the community by putting new knowledge in the hands of those who need to make changes” (U.S. Department of Health & Human Services, 2003.)

• Before you embark on your research learn as much as possible about the community; history, values, significance of local institutions and organizations, previous research that has been conducted.

• CBPR, while effective, requires a long term commitment of time and resources. There are multiple other approaches/methods to rural research that can be considered, such as: Rapid Rural Appraisal (RRA -http://www.fao.org/docrep/003/x5996e/x5996e06.htm)

• “You will also need to be aware that ethical problems will shift and change as the [study] evolves” (Ecosystem Workforce Program).

• Rural research is challenging, like any type of research but 100% necessary! When conducted effectively in a participatory manner, it can have meaningful effects.

Things to consider

Questions?

1. In your opinion, what other types of approaches would be appropriate for rural research?

2. Describe another research context where you might experience challenges similar to a rural context.

3. Based on your knowledge can you think of factors that lead to challenges in providing rural health care?

4. What are some ethical issues you have experienced while conducting research?

ReferencesAverill, J. B. (2006). Getting Started: Initiating Critical Ethnography and Community-Based Action Research in a Program of Rural Health Studies. International Journal of Qualitative Methods, 5 (2).

Brown Bag Lunch on Research Ethics. [Online Image]. (2016). Office of Research, University of Guelph. http://www.uoguelph.ca/research/events/ethics-brown-bag-lunch

Casale, M., Lane, T., Sello, L., Kuo, C., & Cluver, L. (2013). Conducting health survey research in a deep rural South African community: challenges and adaptive strategies. Health Research Policy and Systems, 11 (14). 10.1186/1478-4505-11-14

Community-Based Participatory Research. [Online Image]. (2016). Centre for Social Science Research, George Mason University. < http://cssr.gmu.edu/cssr-capabilities/community-based-participatory-research>

Ecosystems Workforce Program Institute for a Sustainable Environment: University of Oregon. “Ethical Considerations for Students Working with Rural Communities and Non-profits.” (Mar 1, 2016). https://ewp.uoregon.edu/research/consortium-ethics.

Kenny, A., Hyett, N., Sawtell, J., Dickson-Swift, V. Farmer, J., & O’Meara, P. (2013). Community participation in rural health: a scoping review. BMC Health Services Research, 13 (64). 10.1186/1472-6963-13-64.

Kulig, J. C., & Williams, A.M. (2011). Health in Rural Canada. UBC Press.

Mission Impossible?: Attracting a New Demographic to Your Church. [Online Image] (2014). Christian Reformed Church. https://www.crcna.org/news-and-views/mission-impossible-attracting-new-demographic-your-church.

Talley, R. C., Chwalisz, K., & Buckwalter, K.C. (2011). Rural Caregiving in the United States: Research, Practice, Policy. Springer Science & Business Media.

U.S. Department of Health & Human Services. (2003). The Role of Community-Based Participatory Research: Creating Partnerships, Improving Health. Agency for Healthcare Research and Quality – Archives. http://archive.ahrq.gov/research/cbprrole.htm

Walton, N. PhD. (n.d.). What Is Research Ethics? https://researchethics.ca/what-is- research-et hics/.

White, S., & Corbett, M. (2014). Doing Educational Research in Rural Settings: Methodological Issues, International Perspectives and Practical Solutions. Routledge.