Abstract
Participatory action research can be a research methodology that seeks to offer relational processes that develop high touch research relationships, create co-empowerment, while fostering resiliency and strength, within the HIV community. The Calgary HIV Social Society (CHSS) in Calgary, Alberta, Canada co-developed with peer-researchers at Mount Royal University, a progressive form of action-oriented research that allowed the HIV community to develop and provide social gatherings to reduce the impact of stigma and isolation. The research project was developed with the community of people living with HIV to reduce the impact of isolation and stigma. The focus of the research was to better understand how social gatherings could improve the quality of life for those living with HIV. The action-oriented methodology allowed for HIV peer-researchers to bring their expertise on what was needed to reduce stigma and isolation. The HIV social support community created participatory action research processes that successfully contributed to building an inclusive, community for people living with HIV. This paper will share the themes that acknowledge the significant impact that a HIV high touch relationship research community can have for those, who face the barriers of isolation and stigma by increasing community connection, reducing financial constraints that limit participation, while increasing mental health wellness.
Keywords
participatory action research, social gatherings, co-empowerment, HIV, stigma, isolation, high touch research relationships
Author Bio(s)
Dr. Patricia Miller is a contract instructor in the Department of Child Studies and Social Work at Mount Royal University and a community-based researcher. She is dually registered as a clinical Social Worker and Psychologist. Her second PhD. research focus is on the role of self-determination in the healing of trauma across the lifespan. Dr. Patricia Miller is a collaborative academic researcher that worked with CHSS peer researchers on this participatory action research project. Correspondence regarding this article can be addressed directly to: patricia.miller@shaw.ca.
Dr. Brent Oliver is an Associate Professor in the Department of Child Studies and Social Work at Mount Royal University and a community-based researcher. He has worked with community and academic collaborators in Calgary on a wide variety of research projects focused on HIV and Stigma, HIV supportive housing and clinician training. Correspondence regarding this article can also be addressed directly to: boliver@mtroyal.ca.
Ken LaPointe is a peer researcher and president of CHSS. He was diagnosed 32 years ago in 1988, the same year as the Calgary Winter Olympics! He became seropositive likely between 1984-1986 during a time of great fear and ignorance. Without medication to combat HIV directly, it was a time of great peril. He was one of the few survivors of the 1980’s to see the advent of the first medications released in 1989, AZT. Later, drug cocktails normalized the disease to a non-life, threatening condition. Medical advances were far faster to advance than the harmful social conditions of stigma that still largely remain today. He became President of the Society after its incorporation in 2019 to find a grass roots approach to provide much needed social service and fellowship for marginalized people living with HIV in Calgary. It has been our theme to create, in a sense, a “new family” of choice. He is current president of CHSS and in his organizational capacity, he has hosted AGM’s, board meetings, assisted with society banking set-up, the first focus group moderator, created society logo and graphics and fully participated in all social gatherings. Correspondence regarding this article can also be addressed directly to: kenneth.d.lapointe@shaw.ca.
Kim Samson is a peer researcher and the secretary for CHSS. After diagnosis March 2011, Kim immediately started volunteering throughout the HIV Community, giving back by cooking Friday lunches, stuffing condom packs, and attending events through HIV Community Link. Kim volunteered with the Alberta HIV, HCV and STBBI Advisory Consortium as a population specific person from 2015 until 2018. Kim is currently volunteering with the Positive Voices Caucus (ACCH) since 2016. Kim is also on the Peer Advisory Committee for HIV Community Link Peer Programs since 2017. Kim is a well-rounded public speaker and has spoken to many topics related to HIV, including: Normalizing Testing for early detection, the importance of antiretroviral compliance, the U=U movement, Women and HIV, and the impacts of stigma and isolation on people living with HIV. Correspondence regarding this article can also be addressed directly to: kimba44@live.ca. Kim remains an active volunteer in the community where she is currently Secretary/Treasurer for the Peer started Calgary HIV Social Society (CHSS). Kim is also a Peer Researcher with the REACH Community Based Research Alberta Stigma Index Project. Kim is an advocate and activist who is passionate about helping people living with HIV get the support they need, as well as educating the public about the myths of HIV. She firmly believes that we are stronger together and that remains a driving force in her tireless efforts to give back to the HIV community. Kim is a board member of the CHSS society, who holds various positions and acts as a co-treasurer for the organization. Kim was heavily involved in the pre and post development of the social gatherings as well as the focus groups. Kim was responsible for the society registration process and general keeper of CHSS records, activities and served as a liaison with funding providers.
Kate Berezowski is a graduate of University of Calgary, Master of Medical Science program and is a student of Mount Royal University, Social Work Diploma program. She currently serves as research coordinator on a variety of community-based research projects. Correspondence regarding this article can also be addressed directly to: kbere364@mtroyal.ca.
Kirsten Nelson is a graduate of the University of Calgary, Master of Social Work program. Kirsten is an RSW and works as a clinician in Calgary. She dedicates her time to working with those who are experiencing grief and loss, and mental health issues. Kirsten has a passion for widening academics and research in the field of Social Work. Correspondence regarding this article can also be addressed directly to: Kirsten.M.Nelson@outlook.com.
Kevin (chose not to use his last name, due to wanting to keep some anonymity) is living with HIV. He started volunteering with multiple groups including HIV Community link where he assisted newcomers to Canada and with the CHSS as a Peer Researcher. He started volunteering and supporting the HIV Community long before being diagnosed and will pursue his passion to help fellow newcomers and people living with HIV as long as he is able to. Kevin is using his background knowledge working in immigration related fields and his knowledge as a business owner to assist the group. He is also one of the financial donors to the group helping to provide some of the required funds to run this organisation. Kevin has been involved first as a participant and then as a board member. As a board member he gets to put to use his legal knowledge and help guide the association through some of the legal requirements and assist with auditing the financials of the association. Kevin has also assisted with developing covid protocols that meet and exceed the requirement at the time of the creation of said protocols and assisted in the planning and deployment of some of the events. Kevin has also done some peer 1-1 support.
Recommended APA Citation
miller, p. m.,
Oliver, B.,
Lapointe, K.,
Samson, K.,
Berezowski, K.,
Nelson, K.,
&
anonymous, K.
(2021).
High Touch Research: Building Community for Those Living with HIV.
The Qualitative Report,
26(9), 2837-2850.
https://doi.org/10.46743/2160-3715/2021.4857
