Research

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Parents organized this evening of speakers talking about different parts of the development of their children, their children’s networks and themselves.

Research Methods and Practices

I love research when it involves those that the research will matter to as active, guiding participants.   I believe research can be full of fun, inclusive events, graphics and interactions that are memorable and have the capability of creating conditions for change there and then.   The wisdom, as the wise saying goes, is already in the room.  It is the researcher’s job to draw it out and help participants clarify, expand and plan for change of all kinds.  I do a few select research projects a year and these have ranged from an examination of self advocate narratives and their impact, to looking at the community expansion of a small church with a growing congregation, to talking to dozens of self advocates with disabilities about who is in their support networks.  I am happy to talk to you about any aspect of research you might want to involve me in.

Research Participation Notes

You may be on this page as a potential contact for a research project. If so, thank you in advance for your interest and possible participation. We believe that research that is based on the lived experience of participants can inform potential changes in policy and practices. The research methods used are those which adhere to social constructionist principles. Sources for more information can be found at the end of this post. In essence this mode of research necessarily involves those who are most intimately involved in the area of interest, and focuses on practical “future forming” solutions.   Often information can begin to shape new pathways very quickly.   The information you provide will help guide us in our work and in any further steps in this project.

 

This template will give you a sense of what the interviewer will ask you, and how, and what they will do with the information. The researcher will follow a script that goes something like this:

 

 

Title of study

Name of interviewer and of principal or other researcher

 

Oral Consent Script

 

Introduction:

 

Hello. I’m [insert researcher’s name]. I am conducting interviews about [insert topic(s)]. I’m conducting this as part of a community based research project that is overseen by Dr. Aaron Johannes as part of his private research consulting practices.   Thus, this research is not affiliated with any of the universities or colleges he is employed by.

 

Your name was provided to us by our research partners who felt they wanted the project to reflect your experiences.

 

What will happen during the study?

 

I’m inviting you to do a one-on-one interview [telephone or face –to-face] that usually takes about 60-90 minutes. I will ask you questions about [the research topic]. As we speak I will be taking handwritten notes to record your answers.

 

Risks: Are there any risks to participants who are doing this study? Explain any reasonably foreseeable risks, discomforts, inconveniences that might occur, and how they will be dealt with.

 

The risks involved in participating in this study are minimal. …. It is not likely that there will be any serious harms or discomforts associated with the interview. For example, you may feel a little tired …You may feel uncomfortable with (anxious, uneasy about) …. You may find it stressful to…. You may worry about how others will react to what you say, etc.

or you might find some questions uncomfortable to answer. You do not need to answer questions that make you feel uncomfortable or that you do not want to answer.

 

You can stop taking part at any time. I describe below the steps I am taking to protect your privacy.

 

Benefits:

It is unlikely that there will be direct benefits to you, however, by better understanding our area of interest, researchers and others may be able to shape a future that will work better. Other research participants have talked about feeling more hopeful and empowered through their involvement, which is our hope for them.

 

By default, I will keep the information you tell me during the interview confidential. Information I put in my report that could identify you will not be published or shared beyond the research team without your permission. Any data from this research which will be shared or published will be the combined data of all participants. That means it will be reported for the whole group not for individual persons. Information that requires the intervention of authorities for reasons of safety and security will, however, be shared with them.

 

Voluntary participation:

 

  • Your participation in this study is voluntary.
  • You can decide to stop at any time, even part-way through the interview for whatever reason, or up until approximately [insert month, year].
  • If you decide to stop participating, there will be no consequences to you.
  • If you decide to stop we will ask you how you would like us to handle the data collected up to that point.
  • This could include destroying or using the data collected up to that point.
  • If you do not want to answer some of the questions you do not have to, but you can still be in the study.
  • If you have any questions about this study or would like more information you can call or email Dr. Aaron Johannes at ajohannes@me.com or phone him at 604-880-6840.

 

We would be pleased to send you a short summary of the study results when I finish going over our results. Please let me know if you would like a summary and what would be the best way to get this to you.

 

Consent questions:

  • Do you have any questions or would like any additional details? [Answer questions.]

 

  • Do you agree to participate in this study knowing that you can withdraw at any point with no consequences to you?

[If yes, begin the interview.]

[If no, thank the participant for his/her time.]

 

 

The research interviewer will then document your agreement (or not) to participate in a form that looks something like this:

 

Participant’s

Unique ID number

(i.e. 08-A01)

Participant’s

name

Date:
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     

 

 

Further reading on social constructionism in research

 

Gergen, K. J. (2015). From mirroring to world‐making: Research as future              forming. Journal for the Theory of Social Behaviour45(3), 287-310.

 

Gergen, K. J., & Gergen, M. M. (2008). Social construction and research as action. The Sage handbook of action research: Participative inquiry and practice, 159-171.

 

McNamee, S., & Hosking, D. M. (2012). Research and social change: A relational constructionist approach. Routledge.

 

 

About Dr. Aaron Johannes…

 

Aaron has a long history of supporting people with disabilities and other marginalized groups both professionally and as a volunteer. He was a long term volunteer for the provincial board of B.C. People First, one of Canada’s most historic advocacy organizations, and currently volunteers with the B.C. Family Support Institute, a provincial network of families of people with disabilities. For thirty years he was Director of Training and Research as Spectrum Society, as well as working at various other best practice organizations. During this time he headed up Spectrum Consulting, which did a number of inclusive research projects and publications that led to series of provincial workshops.   He is the author, illustrator or editor of ten books ranging from college texts to self-advocate workbooks. His Masters in Interdisciplinary Studies from Athabasca University (dual specialization in education and equity studies) focused on the leadership opportunities of a group of diverse individuals supported by a best practice agency in Ottawa, Ontario; His Doctoral dissertation was the product of a partnership between the TAOS Institute and Vrije Universiteit Brussel and focused on a multi-lensed examination of historic and contemporary narratives of self-advocates (people with intellectual disabilities) and their allies, within systems of governance.   The research involved about 500 people with disabilities in ten different cities and people with disabilities as consultants, co-facilitators, graphic recorders and advisors.   Aaron currently works as an instructor at Douglas College in the Disability and Community Studies program and as an instructor/coordinator in the Aboriginal Stream of CFCS where he connects with a wonderful variety of students of all kinds, as well as schools and all kinds of organizations. His passion is supports for diversity which he believes are enriching for all.

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