Using photovoice to capture the impact of ‘Creating Caring Communities’ in St. James Town Krystyna Kongats, PhD Candidate, School of Public Health, University of Alberta Minara Begum, Community Development Coordinator, Hospice Toronto 5th International Public Health & Palliative Care Conference September 18th, 2017
With support from:
Acknowledgements
With generous support from:
Photovoice Project Members Barbara, CCC Community Member (deceased)
Lovlyn, CCC Neighbourhood Helper
Belinda, Hospice Toronto, Clinical Director
Mashuka, CCC Community Member
Catherine, CCC Community Member
Mehdia, CCC Neighbourhood Helper
Dena, Hospice Toronto, Executive Director
Minara, CCC Community Development Coordinator
E.B.*, CCC Neighbourhood Helper
Miss Jackie, CCC Community Member
Fatema, CCC Carer & Neighbourhood Helper
P.*, CCC Neighbourhood Helper
H.T.*, CCC Neighbourhood Helper
Rachel, CCC Neighbourhood Helper
Kamala, CCC Neighbourhood Helper
Samantha*, CCC Neighbourhood Helper
Krystyna, UofA Researcher
Samuel, CCC Carer *name has been changed at members request
We would like to remember Barbara who enthusiastically gave her time and energy to the project. We hope we have done justice to your contribution. You are dearly missed by your fellow CCC members.
Health Promoting Approach to Palliative Care Health Promoting Palliative Care “directing attention of our prevention, harm reduction and early intervention efforts toward the social, psychological and spiritual morbidities and mortalities commonly associated with death, dying, loss and care.” (http://www.phpci.info/public-‐health-‐approach/)
Research Overview RESEARCH GOAL: to understand how being part of the Creating Caring Communities initiative contributed to building community capacity to care for neighbours living with a life-‐limiting illness and to unravel what impact it has made on those involved and the wider community.
Interpretive Case Study: “Creating Caring Communities in St. James Town”
Participatory Research
Arts-based Research
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THE CASE: Creating Caring Communities (CCC) “Neighbours helping neighbours” Compassionate Community model Aim of CCC: to build community capacity to support community members living with a life-limiting illness and their families in their wish to be cared for at home. Location: St. James Town, Toronto
(City of Toronto, 2011; Hospice Toronto, n.d.; Pandalangat, Habal-‐Brosek, & Balachandran, 2015)
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THE CASE: Creating Caring Communities (CCC) Community development coordinator
Community members who are sick (“clients”)
(Family) carers Collaborations with other health & social service organizations
EQUITY FOCUS
Trained neighbourhood helpers (“volunteers”)
Community members who are isolated and/or homebound, experiencing multi-‐morbidities (e.g., cardiovascular disease, cancer, depression, renal failure, etc.)
THE SETTING: St. James Town, Toronto q Canada’s most densely populated neighbourhood q +160 different languages spoken by residents from over 100 different countries q +64% of residents have immigrated to Canada q High post secondary education q Lower avg. income q High Isolation q Half of seniors live alone (City of Toronto, 2011; Hospice Toronto, n.d.; Pandalangat, Habal-‐Brosek, & Balachandran, 2015)
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Exploring the impact of CCC using photovoice PHOTOVOICE: A participatory arts-‐based approach to research that blends documentary style photography and storytelling 1. Enables people to record and reflect their perspective and experience on a topic 2. It is a fun, engaging method 3. Promotes knowledge sharing 4. Aims to have ‘action’ (Wang & Burris, 1997)
CCC Photovoice Project Timeline
August 2016
September 2016
October 2016-‐ January 2017
Take photos I
Introductory Potluck to the project
First Group Training Workshop
Individual Photo Story Conversation
February 2017
March -‐ April 2017
May 2017
June 2017
Take photos II
Group sharing of photos
Photo Story Selection Sessions
Community Closing photo Celebratory exhibition Potluck
Photovoice Phases: capacity-‐building workshop All Creating Caring Communities members were invited to join the photovoice project including: § Neighbourhood helpers § Community members § Carers § staff In addition to the group workshop, we met with homebound clients who were interested in contributing their experience to the project. In total, 16 CCC members joined the project
CCC Photovoice Project Member Demographics (n=16) Role
Gender
Age
CCC Photovoice Project Member Demographics (cont’d) Place of birth
Ethnicity or racial group
Avg. length of time involved
Project Phases: Individual photo story sessions The individual/small group photo story sessions were an opportunity to go in-‐depth into the stories behind the photos In total we conducted: § 9 individual 1-‐hr interviews § 3 ‘small group’ 1.5 interviews § All interviews were conducted in English except for one that had the help of an informal translator
Project Phases: Circle Group Photo Sharing Sessions Project members shared their photos & stories with each other. CCC members: • felt it was helpful to learn how other members were caring for their neighbours • had new ideas of photos & stories to take after seeing examples from others
Findings
Need to ‘dial up the care’ St. James Town is the most densely populated community in people and high-rise buildings in North America. And recent construction projects confirm we are only intensifying our density. If we’re really going to define ourselves as an accepting community, indiscriminate of blood or back-story, never has there been a better time to dial up the caring. There is a vulnerability in our increasing diversity and density. We have a responsibility to take of each other. What we do individually and collectively to help increase accessibility, integration and support defines who we are. - Rachel, CCC Neighbourhood Helper
St. James Town Fire 2010
Building Community Capacity:
Strengthening Social Capital Social capital: the ability to secure benefits through membership in networks and other social structures (Portes, 1998) •
An important resource in counteracting psychological and social morbidities that can arise from experiences of death, dying, loss, and caring
•
Bonding social capital may be particularly important in marginalized communities
“When I’m sick or I’m alone… when my husband was very sick, I was so helpless. When anyone come to call me, I feel oh my god, there is someone for me. So I feel there must be someone feeling the same, isn’t it? Think about that… We are far away from our country. Here, everyone is our relative, right?” – CCC Carer & Neighbourhood Helper
Strengthening social capital “They feel a connection that can deepen on the group. If they need something, they can ask to their peer, or each other. Prior to that she felt lonely, but now she feels she has someone. When her mother died, everyone went to her home, and they offered themselves. You know, if you need something you can call us, you can consider us as a big family. So she said, this is a place to depend.” - P., CCC Community Member
Facilitators of social capital Place-‐based relationships
Social Capital
Reciprocity Time to build trust
Place-based relationships “Sometimes for the elderly in my building, it’s really hard to get up and get something from the kitchen. A glass of water, it will be really difficult for them. So, if I can do that at night before I do to bed or before they go to bed, if I check they’re ok, it will be nice.” - S., CCC Neighbourhood Helper
Facilitators of social capital Place-‐based relationships
Social Capital
Reciprocity Time to build trust
Reciprocity
“I am helping people so that they are helping me too. I learn from their experience, struggle and knowledge which is my benefit. This is a really huge benefit… We pay lots of money to learn things in schools, however, we don’t have any school for real life experience.” - H.T., CCC Neighbourhood Helper
Facilitators of social capital Place-‐based relationships
Social Capital
Reciprocity Time to build trust
Building Community Capacity: Community Empowerment Mapping Creating Caring Community impacts using Laverack’s (2001) domains of community empowerment: • improves participation; • develops local leadership; • increases problem assessment capacities; • enhances the ability to ‘ask why’; • builds empowering organizational structures; • improves resource mobilization; • strengthens links to other organizations and people; • creates an equitable relationship with outside agents; and • increases control over programme management
Developing local leadership I love to help my neighbours; take them to the hospital or school for the children, for the parents who cannot speak out. So, I’m going there and I’m helping people. At least I can interpret not only Bengali, I can speak Hindi, I can speak Urdu, a little French, you know? I can read lips, so whatever the language they’re using, I can help them at least initially. Everywhere I go, people say ‘she is a very good community worker’. It’s a great, great honour you know. I am not that person [a community worker], but people are giving me that title. - Fatema, CCC Carer and Neighbourhood Helper
Learning Opportunities & Skills Development That volunteer training was something, I’m still using it today. I came to know more about Canada. Even though I’ve been in Canada, I’ve been here for a few years. But if you don’t do things like this, you will not really know all the details. Even though I did some upgrade- because, of course you have to go, forget about the education you have back home- you have to go to school in Canada. So that training was good because we met friends from that training. We got to know the community very well, get connected with the seniors, and learn a lot about Canada. I’m still hoping one day it’s going to help me move forward. - E.B., CCC Neighbourhood Helper
Raising awareness: community exhibitions
Challenges •Informal-Formal Tension •Limits of a local-development/selfhelp/mutual-aid approach: Need to consider broader structural issues (e.g., income, housing, etc.) •Funding: identifying core funding.
Photo credit: H.T., Neighbourhood Helper
Next steps •
Refine the Creating Caring Communities model and toolkit
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Continue to raise awareness through the photovoice exhibition
•
Scaling-up the model
•
New research/appreciative inquiry opportunities suggested by project members
Photo credit: Minara, CDC Coordinator
Thank you! CONTACT: Minara Begum
Krystyna Kongats
Hospice Toronto
[email protected]
School of Public Health, University of Alberta
@Minara_B
[email protected] @kkongats
