Abstract
The Calgary HIV Social Society (CHSS) self-determined and organized several social-recreational monthly events to reduce and understand the effects of social isolation and stigma that people living with HIV face every day. It has been found that COVID-19 had impacted the lives of people living with HIV by creating significant isolation for those already stigmatized because of living with HIV. Using a Participatory Action Research (PAR) methodology and focus group at the end of the events, the research showed how COVID 19, and the related concurring isolation has impacted the lives of people living with HIV. The research included three in-person social gatherings with a total of 60 participants living with HIV attending and a focus group with 10 participants. The social gatherings around the city of Calgary, Alberta showed how the possibility of having a safe space and being supported by people who live with similar systematic barriers, buffers the detrimental, social stigmatization of living with HIV and its secrecy. The research brought forth a better understanding on how social connection (including on-line support) during COVID-19 for persons living with HIV increased their general sense of belonging, reduced stigma and was a protective factor for their overall mental health.
Keywords
co-empowerment, self-determination, community, COVID-19, focus groups, HIV, isolation, participatory action research, social gatherings, stigma
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 Clinical Psychologist. She has completed two doctorate degrees: one in behavioral and social science and the other in clinical psychology. Dr. Patricia Miller is a collaborative academic researcher that worked with CHSS peer researchers on this participatory action research project. Please direct correspondence 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. Please direct correspondence to boliver@mtroyal.ca
Ken LaPointe HIV Lived Experience Positionality Statement Ken 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 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. Please direct correspondence to kenneth.d.lapointe@shaw.ca
Kim Samson HIV Lived Experience Positionality Statement Kim 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. 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. Please direct correspondence to kimba44@live.ca
Vincenzo Sabella is the research coordinator at the Calgary Therapy Institute and is involved in community-based research projects. Please direct correspondence to calgarytherapyinstitute@shaw.ca
Acknowledgements
We would like to thank Mount Royal University for its continued financial and academic support as we continue to develop capacity with the HIV community, its peer-researchers and all participants that attended and engaged the research process. We thank all members of this action-oriented research process as the hours of work and support are tremendous and have helped support the ongoing vitality of this participatory action research project.
Publication Date
2-7-2024
DOI
10.46743/2160-3715/2024.6424
Recommended APA Citation
Miller, P. M.,
Oliver, B.,
LaPointe, K.,
Samson, K. A.,
&
Sabella, V.
(2024).
Building Community for Those Living With HIV: Co-Empowerment and Participatory Action Research.
The Qualitative Report,
29(2), 516-534.
https://doi.org/10.46743/2160-3715/2024.6424
