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Abstract

There is a lack of access to culturally safe and individualized cancer survivorship care and awareness of the unique challenges and strengths that Indigenous persons living with cancer (PLCs) face. This study aimed to explore the experiences and needs of First Nations and Métis PLCs across Canada. From 2014 to 2016, we engaged 87 participants who were either PLCs or caregivers (CGs) from five communities across Canada—Gitxsan and Kenora, British Columbia; Ottawa, Ontario; and Akwesasne and Kahnawake, Quebec—using participatory arts-based methods. Following the thematic analysis of participants’ photographs, journal entries, and stories, we created a video exploring the themes of spirituality and ceremony, finding strength together, the land and nature, creating and sharing, and navigating health care. Participants’ feedback on the video supports the use of video as a knowledge translation tool that may promote meaningful dialogue around the cancer experiences of Indigenous peoples in Canada.

Keywords

arts-based cancer community-based Indigenous photovoice survivorship

Introduction

Indigenous peoples in Canada are disproportionately affected by cancer and other health issues, suffering from worse incidence survival and mortality outcomes compared to non-Indigenous people (Canadian Partnership Against Cancer, 2011; Jamal et al., 2021; Marrett & Chaudhry, 2003; Mazereeuw et al., 2017). Accompanying these issues are unique challenges within the psychosocial experience of cancer and access to culturally appropriate and tailored cancer survivorship care. To begin, we summarize two relevant areas of research for our study: (a) health-illness experiences of Indigenous peoples and (b) conceptualizations of knowledge and culturally safe health practices. Please note that we use Indigenous peoples throughout the text when referring to the collective group of Indigenous persons and the terminology Indigenous people when referring to more than one Indigenous person rather than the collective group. Finally, we use the terminology First Nations and Métis Peoples when referring to specific Indigenous groups in Canada.

Health-illness experiences of Indigenous peoples

Although health-illness experiences are multi-faceted, Indigenous persons living with cancer (PLCs) experience high levels of psychosocial stress (Bettencourt et al., 2007; Garvey et al., 2020; Gotay et al., 2002; Segelov & Garvey, 2020). Psychosocial—that is psychological and social—aspects of care for Indigenous patients include the patient experience of care, supportive care needs, quality of life and well-being, and psychological distress (Garvey et al., 2020). Significantly, during cancer treatment, Indigenous people report higher levels of pain, depression, anxiety, and shortness of breath than non-Indigenous Canadians (Bodnarchuk et al., 2014). Factors contributing to such health disparities are historical marginalization, racism and oppression via residential schools, displacement, and forced assimilation which have caused multiple experiences of loss within Indigenous communities (Adelson, 2005; Horrill et al., 2019; Segelov & Garvey, 2020). Indeed, colonialism is increasingly recognized “as a structural determinant of health that shapes and constructs other determinants of health among Indigenous peoples” (Horrill et al., 2019, p. 11).

Lack of access to culturally safe and individualized health care for Indigenous PLCs also contributes to health disparities. Barriers to accessing such care include: (a) individual factors, such as communication difficulties, transportation challenges, stigma, and fears (Horrill et al., 2019); (b) systems factors, such as the lack of locally available, culturally appropriate health care resources, and difficulties navigating complex health systems (Cavanagh et al., 2016; Horrill et al., 2019; Sheppard, 2019); and (c) structural factors, such as socioeconomic conditions like poverty, housing instability, and food insecurity and historical conditions like residential school experiences and intergenerational trauma (Horrill et al., 2019). These barriers have impacted different aspects of the health-illness experiences of Indigenous peoples, including PLCs. Given these concerning findings, researchers and health care professionals (HCPs) must integrate decolonizing approaches to research and health care to ensure cultural safety for Indigenous peoples and increase awareness of such barriers (Greenwood et al., 2017; Monchalin et al., 2019; Segelov & Garvey, 2020; Sheppard, 2019; Victor et al., 2016).

Conceptualizations of knowledge and culturally safe health practices

Colonialism has impacted health outcomes among Indigenous peoples, but also knowledge systems. Indigenous knowledge consists of “a local system of being, knowing, and expressing” (Settee, 2013, as cited in Victor et al., 2016, p. 264) transmitted through oral tradition via story, speech, and song (Kovach, 2009; Lekoko, 2007). Colonial practices such as the residential school system have suppressed Indigenous cultural expression and language (Archibald, 2008; Horrill et al., 2019). This has impacted the maintenance and development of traditional knowledge in turn influencing health-illness experiences (Robbins & Dewar, 2011). For example, in a Canadian community-based study exploring the possibility of an integrated health care system, First Nations in Manitoba highlight the importance and need to respect Indigenous health knowledge as well as de-stigmatize, recognize, and incorporate traditional healing, healers, medicines, therapies, and approaches into primary health care (Kyoon Achan et al., 2021). Despite the imposition of western values and literacy upon Indigenous peoples via the residential school system and Canada’s current mainstream education system, a previous study illustrates how participants draw upon individual and community-based strengths to address the challenges of living with cancer (Poudrier & Thomas-MacLean, 2009). For instance, participants in our pilot study highlighted the importance of sweat lodges, prayer, and smudging in their recovery (Brooks et al., 2008; Poudrier & Thomas-MacLean, 2009). Moreover, studies reveal increased use of traditional Indigenous healing methods—a holistic approach to healing that fosters physical, mental, and spiritual balance—alongside western medicine to address illness (Gall et al., 2018; Redvers & Blondin, 2020; Robbins & Dewar, 2011; Struthers & Eschiti, 2004).

National Picture Project

Our team drew upon previous experiences of working collaboratively with First Nations and Métis people in Canada (Brooks, 2009; Brooks et al., 2008; Hammond et al., 2017; Poudrier & Thomas-MacLean, 2009). In our pilot study on First Nations and Métis women’s experiences with breast cancer, many participants reported feeling they had “fallen into the cracks” of cancer care (Poudrier & Thomas-MacLean, 2009, p. 306). We initiated the National Picture Project (NPP) in response to requests from Indigenous women in our pilot study to expand the project to a national level to incorporate more stories and reduce experiences of isolation and invisibility. The NPP also addresses the needs to further explore psychosocial survivorship issues (Garvey et al., 2020; Miedema et al., 2004; Tomich & Helgeson, 2002) and relationships between ethnicity, culture, and marginalization—as previous studies have neglected to explore (Bettencourt et al., 2007; Gotay et al., 2002; Nelson et al., 2009).

Study objectives

The NPP’s overarching goal was to increase knowledge about First Nations and Métis Peoples’ experiences with cancer as PLCs or caregivers (CGs) through the production and screening of a video. The second goal was to address gaps in knowledge and care to better inform the development of culturally safe psychosocial survivorship interventions with First Nations and Métis Peoples in Canada. Our previous articles on this project have focused on themes of support, barriers, and cycles of silence (Hammond et al., 2017); spirituality in cancer survivorship (Gifford et al., 2018); and the intersections between storytelling and visual arts (Thomas et al., 2019). The current article’s objectives are to present a comprehensive overview of the NPP findings and describe themes generated from feedback received on our video, Finding Strength Together (A National Picture Project, 2016).

Methods

We used a participatory research approach combined with arts-based methods to foster community engagement (Castleden et al., 2008; Catalani & Minkler, 2010; Gabel et al., 2016; Hammond et al., 2018; Mitchell & Baker, 2009). We chose participatory research as it is a culturally safe approach to research with Indigenous peoples (Castleden et al., 2008; Keller-Olaman & Austin, 2009; Lekoko, 2007; Mitchell & Baker, 2009; Salmon, 2016). Within participatory research methods, collaboration and engaging in a “two-way flow” (Crisp et al., 2000, p. 102) of knowledge can promote capacity building thereby increasing health promotion (Labonte & Laverack, 2001).

From the study’s outset, we worked extensively with community champions—respected members of the community who supported the research project and some of whom already had connections to team members thereby aiding to liaise between the team and the community. Community members included elders, band councils, and community services organizations such as Saint Elizabeth Health Care First Nations, Inuit, and Métis Program. Community members partnered with the team to provide support in numerous ways, including inviting potential participants to initial sharing sessions, identifying appropriate locations for sharing sessions, helping to arrange community-based catering, and disseminating the findings of our study via community events and media such as local television and radio.

We used photovoice as it is an empowering approach to understanding health experiences (Hammond et al., 2018; Liamputtong, 2007; Villagran, 2011). Photovoice is not only an established tool for participants to share their stories (Harrison, 2002; Liamputtong, 2007; Wang, 1999) but it also provides psychosocial benefits and facilitates knowledge transmission as participants’ expertise is validated and transmitted to care providers (Wang & Burris, 1997). Combining photography with journaling promotes a dynamic, reflective, and creative research process. The team also involved a journaling consultant who assembled an advisory board of Indigenous people and key stakeholders to provide feedback on the journaling guide provided to participants. In addition, participants were invited to modify the journaling and photography activities in any method they wished which meant some participants shared photographs or writing that predated the study.

Participants

We distributed promotional materials to First Nations and Métis community centers and organizations and local media via newspapers, mailing lists, and radio. Interested participants contacted research assistants or community champions to learn more about the study. In total, 87 individuals, PLCs (n = 43) and CGs (n = 44), from five communities across Canada—Gitxsan and Kenora, British Columbia; Ottawa, Ontario; and Akwesasne and Kahnawake, Quebec—participated in this study. PLCs had various types of cancer including breast, colon, kidney, lung, prostate, and skin cancer. PLCs included Indigenous people who previously or currently had cancer, were 19 years of age or older, and were able to provide informed consent. CGs consisted mainly of family members and HCPs.

Data collection

Our 3-year project was divided into three phases. We began Phase I with an initial sharing session in each community. In the first communities involved, we modified the sharing session process to include CGs. This is one example that demonstrates how the research was viewed as shared work and that we were able to collaborate in mutually respectful ways. The locations of sharing sessions were carefully selected to establish a safe space and Elders provided openings and closings suited to each community such as smudging and prayer. Discussion questions included: “What are your main sources of support?” and “Where do you find strength and resilience?” In total, 65 people participated in the audiorecorded sharing sessions. Following the session, PLCs were invited to participate in arts-based activities and provided with digital cameras and paper journals to document noteworthy moments, objects, images, scenes, and so on, which reflected aspects of their cancer experience. Eighteen participants journaled and 21 participants shared photographs. Participants (n = 34) were invited to a follow-up, audiorecorded individual interview during which they highlighted the content and significance of their photographs and writings.

In Phase II, we conducted follow-up sharing sessions at all five study locations during which participants (n = 43) reflected on their own and others’ contributions, the research process, and the dissemination of findings. Participants were invited to respond to open-ended questions, discuss their photographs, and discuss the preliminary themes.

Phase III consisted of the production and dissemination of our video. To choose raw material for the video, team members who attended the first sharing sessions selected photographs, journal entries, and audio clips from sharing sessions and interviews which reflected the most significant themes from Phases I and II. Participants’ stories included in the video were narrated by a First Nations woman who participated in our project. It was not possible to share a video rough cut with each community due to feasibility constraints, such as geographical barriers or lack of access to computers; therefore, we worked with an advisory group of participant volunteers who provided feedback on the rough cut. We also worked with an Indigenous graphic design company to produce a poster of emerging themes. We distributed this poster to the communities and our advisory board for feedback which was subsequently used to revise the poster and the video.

We screened the final video five times in four of the participating communities with over 100 attendees. The sharing sessions involved sharing a meal from community-based catering together and screening the video. Research assistants took notes of the audience’s responses to discussion questions without collecting identifying information. We followed a complete process of oral consent which consisted of informing participants that completion was voluntary and anonymous and that participation could be withdrawn without reprisal. Afterward, we invited audience members to complete a survey that was pre-emptively placed at each participant’s seat on a table. See Appendix 1 for open-ended questions. The survey questions aimed to explore how messages in the video could inform culturally relevant and safe survivorship care for First Nations and Métis Peoples. In total, 46 audience members completed the survey.

Analysis

All sharing sessions and interviews were transcribed verbatim. We collected digital copies of photographs and typed handwritten journal entries. Our analysis was initiated by participants’ selection and discussion of three to five personally meaningful photographs during follow-up interviews. We triangulated these photographs with the journal entries and interview transcripts. Following established guidelines for thematic data analysis, six team members read the data holistically and line by line to extract significant statements (Charmaz, 2000, 2005; van den Hoonaard, 1997). This process resulted in summaries, including text and photographs, compiled by the project coordinator. The entire team contributed to multiple discussions of the summaries to refine their content and select the most significant themes for the video. Participants and their communities were also invited to comment on these summaries. Considering feedback on the summaries and poster, the project coordinator collapsed the resulting thematic categories into thematic clusters within NVivo (Version 11). Further information on our methods is available in our published protocol (Thomas et al., 2015).

Rigor

Data collection and analysis occurred concurrently with multiple rounds of formal and informal feedback. We used a combination of independent coding and extensive group discussions relating to the themes. In doing so, the data analysis and production of the video were informed by research team members’ and participants’ interpretations of the data.

Ethics

This research was approved by the Research Ethics Board at the lead author’s university. In addition, the Mohawk Council of Akwesasne and the Health and Social Services Research Council for the Kahnawake community approved the study. The remaining communities did not have a formalized ethics review process in place. Informed consent was obtained from participants before all sharing sessions and interviews. We have used participants’ names for those who wish to be acknowledged in publications and pseudonyms in quotations for those who wish to maintain anonymity. We also obtained third-party consent for nonparticipants appearing in the photographs collected. When third-party consent was not obtained, images were blurred. All video participants have consented to its publication. In addition, videos resulting from the project were made freely available via YouTube, and also on DVD for all participants and communities to use as they wish. Participants and community champions—such as Elders, band councils, and community services organizations—were compensated for their contributions. Finally, travels cost up to 100 km from the site of the sharing session, as well as food and refreshments were provided.

Findings

We report our findings in two sections. The first presents themes conveyed by participants during Phases I and II which are also included in our video. The second presents themes generated from the feedback we received on the video and screening during Phase III.

Themes featured in the video (Phases I and II)

The video features five themes: (a) spirituality and ceremony; (b) finding strength together; (c) the land and nature; (d) creating and sharing; and (e) navigating health care (A National Picture Project, 2016).

Spirituality and ceremony

Participating in traditional cleansing rituals such as moon ceremonies, sweat lodges, and burning tobacco and sage was helpful for some participants to heal from their cancer experience. Some chose to explore traditional heritage and ancestry, using symbolic images such as wearing red for power and strength. For example, Chantal explains that she bought a traditional painting for her mother who was experiencing cancer to “remind her of the healing power she has within herself and to ask her ancestors for healing, especially her father who was watching over us” (CG, Ottawa).

Praying or giving thanks for what one has were other important spiritual practices. Prayer can be a mode of communication with the Creator and a way to connect spiritually. Dawn explains its importance:

In our community when the church really went strong, the traditional medicines and the traditional healing and spirituality of our people really went underground. When I was sick and I was going through all this, I prayed. I combine the two and I prayed like that. Because when you’re sick, you pray, you pray really, really hard. I pulled the two, not religion, but spirituality together. That’s what helped me get through. (PLC, Kahnawake)

These accounts illustrate the value of traditional cultural practices, such as spirituality, for participants during their journey with cancer.

Finding strength together

During difficult times ensuing from cancer, participants—PLCs and CGs alike—stressed the importance of family and community support. Taking time to truly connect with family members diagnosed with cancer contributed to emotional healing. Local cancer support groups, such as the Akwesasne Cancer Support Group, are essential to providing help:

I was diagnosed with prostate cancer 10 years ago and when the doctor told me that I had the cancer, my jaw dropped to my chest. I said, “This is a death sentence.” . . . When I told my wife I said, “You know, if I get better, if I beat this monster,” I said, “we are gonna start a group. It will be called the Akwesasne Cancer Support group.” And this is to help the people who need help, go to their treatments and to get them a little bit of money for their gas, their meals, and maybe some accommodations if necessary. (George, PLC, Akwesasne)

Some participants were frustrated about limited resources for First Nations and Métis PLCs. Irene expressed the need for HCPs to collaborate with Indigenous Peoples and respect their beliefs: “We need to work hand in hand—our traditional practices and ways, how we heal, we’ll work hand-in-hand with western, you know and give it that equal validation and accreditation” (PLC, Kenora). Another important priority is to support patients and their families in finding ways to communicate openly and care for each other while experiencing suffering and grief.

The land and nature

For some, elements of nature were symbols and metaphors for cancer survival and healing. For example, Anita describes seeing crocuses in her garden after her chemotherapy treatment:

How is it that they didn’t freeze up and just become brittle?. . . Every spring when the snow starts moving away from the back of my house that faces the South. I see them arise and they’re a symbol of my survival from cancer. (PLC, Ottawa)

Nature was described as having the potential to foster gratitude and comfort for those who have lost individuals to cancer. In addition, nature is linked to spirituality as birds and the sun, among others, are considered spiritual guides. Finally, being in nature was an important part of the healing journey for some PLCs as it contributed to their well-being and brought balance.

Creating and sharing

Partaking in artistic activities and traditional pastimes helped some participants make sense of their experiences and heal. When describing her quilt, Karen explained, “I call it my Eagle at Rest. This is me, new and improved. After going through all that I’ve done, I have the creativity now. Like I feel really connected to who I am” (PLC, Ottawa). Moreover, creative traditions, such as song, quilting, beading, and painting, integrate sharing practices. Participants gained personal and uplifting benefits from partaking in artistic activities while being able to share their stories with others and pass on traditional knowledge.

Navigating health care

Navigating the complex health care system was a common challenge. Highlighted difficulties included receiving an overwhelming amount of information, navigating various treatment options and their consequences, processing physical changes of the cancer journey, and finding support for PLCs and their families. Catherine explained her journey and desire to support others:

I know about cancer, what it can do. You know, there’s nothing there to help you like for support, you know, other than your own family. I lost my job for that year and a half. And, you know, I had trouble getting welfare to pay for my bills. I had to let go of my house and living with people, you know, while I was going through this. . . . What I went through with the cancer, I help people who have it in my community and I tell them that, “It’s not a curse, it’s not your fault.” (PLC, Kenora)

Although participants acknowledged support groups were available, some did not always feel welcome within these groups or like their needs as Indigenous people were met. Because of this, many participants explained they relied strongly on family and friends’ help:

A lot of families need a lot of financial support to be there for their family. I had to pay out of my own pocket for my family to be with me. . . . I never received any support or say, “Well, this is what’s gonna happen. How can we help you?” I never received that. (Irene, PLC, Kenora)

Participants expressed their relationships with HCPs were sometimes strained by a lack of dialogue about traditional medicines, which many people wished to use alongside recommended treatments. In addition, as Chantal expressed, HCPs sometimes failed to elaborate on treatment options:

Neither he [the radiation oncologist] nor the other doctor thought that my mother would endure chemo very well. They did not think she was strong enough. They wrote her off that way. In hindsight, I wish they had known better and not jumped to such a hasty conclusion—my mother tolerated chemo very well—it’s just that when she finally had it nine months later there was significant tissue damage from radiation so the chemo couldn’t reach the tumor as well. (CG, Ottawa)

Relationships were further strained by feelings of conflict and discrimination. For example, participants felt their initial pain was more often dismissed and they were more often misdiagnosed than non-Indigenous patients.

Themes from video sharing sessions and survey (Phase III)

Our analysis of video-sharing sessions and the survey resulted in five themes that support the use of video as a knowledge translation tool suitable for collaborative work with Indigenous peoples.

Real stories provide connectedness

Overall, audience members indicated the video promoted a feeling of connectedness and a sense of community. They also highlighted the video could help other PLCs, their CGs, and family in feeling less alone. For example, a HCP stated the video created a “feeling of connectedness. It brings forward positiveness in an ugly disease. Insight to the journey of others may help individuals feel less alone” (O30FH, HCP, Ottawa). A CG described: “The sense of community among cancer survivors was very good to see. There was a sense of belonging among the people” (A5UC, CG, Akwesasne). Another strength of the video, as a HCP explained, was that the stories “wove together to speak for many different people’s experiences” (O32FH, HCP, Ottawa).

The reality of the stories in the video was appreciated. For example, one participant commented: “Very touching. Bought back memories from my own cancer, my husband’s and my sister’s” (K17FSC, PLC and CG, Kahnawake). In creating relatable and personal content, videos may promote empathy and a stronger feeling of connection for viewers.

Stories provide hope

While creating the video, participants recommended highlighting hope and holistic understandings of healing to reduce the stigma and fear of cancer within communities. After viewing the final video, many participants appreciated its ability to capture participants’ strengths which inspired a “feeling of hope and love for all” (K23UCO, CG, Kahnawake). For example, one CG mentioned, “I liked the peoples’ stories and their experiences with cancer, their hardships and strength. What stayed with me is the strength everyone found to overcome their sickness” (A10FC, CG, Akwesasne).

Audience members also emphasized how the audiovisual elements of the video helped amplify the message of hope:

The voice-overs of the patients were very profound. It is one thing to read someone’s story, but to hear their voice as they recollect. The message is so much louder. (T43FO, health administrator, The Ottawa Hospital)

I liked the whole video − hearing the strength and resilience in the voices of the survivors. The part that stayed with me was how each of these people handled, and the issues of what the Indigenous have to deal with in the “outside” care of non-native. (A11FO, daughter of PLC, Akwesasne)

Furthermore, audience members stressed anyone experiencing cancer and their families should see this video as it can provide hope during their cancer trajectory.

Increasing awareness of First Nations and Métis Peoples’ cancer needs

Our findings demonstrate a lack of awareness of resources and support within health care and communities for PLCs. One CG from the audience explained, “there should be more awareness of what help is available to those who have cancer and those who care for them” (A5UC, CG, Akwesasne).

Education was valued to produce more caring, sensitive, and empathetic responses to cancer within communities. One participant said: “People in the community should be more sensitive and caring toward those with cancer. More education on the subject for people could be more supportive” (K27USC, PLC and CG, Kahnawake). An audience member who had participated in the study also stressed this:

I am so proud that I was able to be a part of this project. I always knew that I wanted to tell my story and you gave me an opportunity that I really needed for my healing. . . . We need to do more work like this in sharing our stories. It is so powerful, and I think when people from the community see this, they will have a better understanding of what I have went through. Maybe those in my family who were hurtful and didn’t understand may think differently because of this video. We have hurt within our own families, lack of understanding leading to isolation and fear. That is why I needed my son so much, he was my main supporter. (G46UN, PLC, Gitxsan)

Training to improve cultural sensitivity

Many audience members emphasized the importance of cultural sensitivity training for HCPs. One HCP explained the need to increase awareness: “I don’t think health professionals really understand or appreciate the cultures of First Nations, Métis people” (T39UH, HCP, The Ottawa Hospital). Audience members agreed HCPs could benefit from seeing the video and hearing participants’ firsthand accounts as this could “tailor approaches to be more patient-centered, and ensure existing resources are all-inclusive” (T43FO, health administrator, The Ottawa Hospital).

To improve cancer survivorship care for First Nations and Métis Peoples, audience members suggested HCPs could: (a) “listen and respect patients’ desire to talk about and use traditional medicine/learning in combination with western medicine” (T42MO, male, The Ottawa Hospital); (b) become more culturally sensitive to patients’ needs and experiences such as, gaining a better understanding of traditional practices like prayer, smudging or sweat lodges; and (c) “link First Nations, Métis and Inuit individuals to appropriate support centers/groups” (O30FH, HCP, Ottawa). Overall, this video could be a resource for HCPs wanting to better understand Indigenous culture as one participant explained:

I had a good experience with my doctors, but that is not the case for all of our people. I think that all doctors and nurses can learn to be better listeners especially because our people have ways and medicines that can help. They need to know how hard it is for us to leave our communities. For some community members their entire family goes with them it’s important that they understand this is our way. Resources like this [the video] can help them understand better. (G46UN, PLC, Gitxsan)

Finally, one family member of many people experiencing cancer stated: “Health care professionals should make fewer assumptions about First Nations people and their health histories” (O37FCO, CG, Ottawa). Indeed, education to produce more compassionate responses toward First Nations and Métis patients and their families is greatly needed.

Increasing the engagement of men and families

When commenting on what was missing from the video, many audience members suggested including men and children with cancer as well as their families. As one member highlights, “cancer affects all members of the family. Men need to be encouraged to join support groups” (K27USC, PLC and CG, Kahnawake). Including men’s and other family members’ experiences, such as addressing family trauma or loss of family members to cancer, could increase the impact of the video.

Limitations

For a few participants, there were no visuals such as photographs to support their stories. This is not uncommon in photovoice research as participants may wish to take photographs that are seasonal (Brooks et al., 2008). To mitigate this, the film editor selected appropriate images available without copyright restrictions to retain important topics in the video. In addition, at one community screening, a few audience participants expressed disappointment that environmental causes of cancer were not further explored. However, this topic had not been identified as a prominent theme in the data, by our advisory group, or during the poster feedback process. As a result, it was not included in the video. Nevertheless, the video screening did create a forum for the resulting discussion about environmental degradation. While the “missing theme” is a limitation, it is also suggestive of the possibilities video offers for prompting discussion.

Discussion

The NPP aimed to increase knowledge about First Nations and Métis Peoples’ experiences with cancer. We found spirituality and ceremony, connection to the land and nature, creating and sharing, as well as families and communities were important sources of healing and support for participants during survivorship. In telling and hearing personal stories, participants and those who viewed the video felt a greater connection to those impacted by cancer. We also aimed to address gaps in knowledge and care to better inform the development of culturally safe psychosocial survivorship interventions. Participants recommended increasing cancer awareness within communities and among HCPs to mitigate identified barriers to accessing cancer care. While the video underlined these barriers, it also showcased the strength and resilience of First Nations and Métis Peoples, thereby inspiring hope.

Barriers, strengths, and solutions

Our findings confirm barriers to accessing culturally safe survivorship care identified in the literature. For example, support is needed for PLCs but also for extended family members, which are often ignored within health care settings (Olson et al., 2014; Shahid et al., 2009). Furthermore, communication difficulties, such as HCPs’ negative responses to traditional medicines, can hinder access to survivorship care (Gall et al., 2018). Poor communication may be mediated by distrust of western medicine and practitioners, feelings of conflict, racism, or discrimination ensuing from HCPs’ scant understanding of historical trauma and its impacts on Indigenous patients (Cavanagh et al., 2016; Garvey et al., 2020; Horrill et al., 2019; Shahid et al., 2009).

Despite barriers, Indigenous communities have multiple sources of strength. Our findings are consistent with previous studies underscoring the importance of spirituality and traditional practices (Cavanagh et al., 2016), land and nature (Robbins & Dewar, 2011), as well as family and community (Cavanagh et al., 2016; Garvey et al., 2020) in supporting PLCs. Survivorship programs could benefit from incorporating and celebrating Indigenous communities’ strengths and knowledge. The indigenization of health care by weaving Indigenous and western knowledge may ensure cultural safety and respect for Indigenous people accessing survivorship care (Greenwood et al., 2017). Examples of this are highlighted in the literature such as increasing involvement of family members in care (Cavanagh et al., 2016), providing personalized spiritual care (Cavanagh et al., 2016), or providing patient-centered care which legitimizes individual subjectivity and experience (Victor et al., 2016). These efforts may be supported by Indigenous patient navigators who contribute to connecting patients with adequate sources of support and overcoming barriers to care (Cavanagh et al., 2016; Shahid et al., 2009; Sheppard, 2019).

Storytelling via video

Responses to the video strongly support its use as an educational and knowledge translation tool. Participants expressed the video created a feeling of connectedness and community which are important given a recognized need for Indigenous PLCs to connect with one another (Olson et al., 2014; Poudrier & Thomas-MacLean, 2009). The video’s success in increasing connectedness may be attributed to the power of storytelling. For example, in Cueva and colleagues’ (2016) study in Alaska Native communities, participants reported digital stories are culturally appropriate tools to facilitate cancer education while promoting connection to others. Stories are well-documented tools for decolonizing methodologies as they are a source of healing and empowerment as well as a method of cultural knowledge transmission (Archibald, 2008; Cueva et al., 2016; King, 2008; Kovach, 2009; Lekoko, 2007).

Finally, HCPs with demanding workloads may struggle to access and read scientific publications, while some patients and CGs may find the language of scientific publications inaccessible. Utilizing visual methods, such as educational videos, addresses these challenges by sharing research findings in a medium that visibly draws upon cultural strengths and is accessible to patients, HCPs, and policymakers.

Conclusion

Although the barriers and solutions suggested by the communities involved in our project are specific to the cultural context of Indigenous populations in Canada, the literature presented above suggests that Indigenous Peoples within a global context—for example, in the United States, Australia, and New Zealand—face similar barriers to accessing culturally safe survivorship care. While individual and community perspectives tend to receive limited attention in research, the NPP creatively presents voices and images of First Nations and Métis PLCs from across Canada as one collective narrative while also focusing on strength, resilience, and capacities for healing. Our findings support the use of video production as a knowledge translation tool—congruent with traditional ways of knowing such as storytelling—to promote meaningful dialogue around Indigenous peoples’ cancer experiences. Ultimately, gaps and suggestions for cancer care practice may be used to inform culturally appropriate and tailored supportive care both in the Canadian and global context.

Footnotes

Appendix 1 Acknowledgements

We acknowledge the broader National Picture Project research team for their contribution to the research project and Jinane el Hage for her assistance in editing and formatting the manuscript.

Authors’ note

Roanne Thomas, PhD, is a Professor in the Faculty of Health Sciences at the University of Ottawa. Using innovative tools such as photovoice (storytelling + photography) and other visual arts, such as mixed media, she and her research teams are helping people to foster a sense of well-being throughout life’s transitions, including those associated with chronic illness and disability. From 2011 to 2021, Thomas held a Canada Research Chair in Creative Practices and Well-being. Prior to that, she held a CIHR New Investigator Award at the University of Saskatchewan. Thomas is also a visual artist and facilitates workshops on mixed media art and creative writing.

Wendy Gifford, PhD, RN, is a Professor at the University of Ottawa Faculty of Health Sciences School of Nursing, Loyer-DaSilva Research Chair in Community and Public Health Nursing, and Co-Director of the Center for Research on Health & Nursing. Her program of research focuses on promoting health equity with disadvantaged and marginalized groups, with a particular focus on working with First Nations, Inuit, and Métis. She recognizes that health care is founded on systemic settler racism that continues to disenfranchise and marginalize Indigenous Peoples today, which has increasingly situated her research within critical decolonizing methodologies and approaches.

Jennifer Poudrier, PhD, is a Métis sociologist and Associate Professor in the Department of Sociology, at the University of Saskatchewan. Her research interests include sociology of science and knowledge, sociology of health and medicine, community-based participatory research, Indigenous knowledges, and visual methodologies. Dr. Poudrier uses innovative research methods such as photovoice, a method that combines the use of photography, interviews, and sharing circles. She views collaborating and the exchange of knowledge with community members as an integral part of her research approach.

Alysson Rheault is a research assistant at the School of Rehabilitation Sciences at the University of Ottawa. She completed a Bachelor of Health Sciences at the University of Ottawa during which she began contributing to projects focused on arts-based research, qualitative research methods, and critical disability studies. She is currently contributing to research exploring how arts and participatory visual methods can contribute to new understandings of a good life while living with impairment.

Shirin Shallwani, PhD, is a physiotherapist and a certified lymphedema therapist. She recently completed her PhD in Rehabilitation Sciences at the University of Ottawa, where her doctoral research focused on leisure-time physical activity in people with advanced cancer. She is also a research associate at the McGill Lymphedema Research Program. Her research interests include exploring physical activity and rehabilitation strategies in individuals with different types of cancer, as well as investigating lymphedema risk-reduction and management approaches in cancer and non-cancer populations.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: This work was supported by a Quality of Life Grant from the Canadian Cancer Society in memory of Edna Goebel [#701822].

ORCID iDs

Wendy Gifford

Alysson Rheault

Shirin Shallwani

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“We need to work hand in hand”: supporting cancer survivorship care with First Nations and Métis peoples in Canada via video

Abstract

Keywords

Introduction

Health-illness experiences of Indigenous peoples

Conceptualizations of knowledge and culturally safe health practices

National Picture Project

Study objectives

Methods

Participants

Data collection

Analysis

Rigor

Ethics

Findings

Themes featured in the video (Phases I and II)

Spirituality and ceremony

Finding strength together

The land and nature

Creating and sharing

Navigating health care

Themes from video sharing sessions and survey (Phase III)

Real stories provide connectedness

Stories provide hope

Increasing awareness of First Nations and Métis Peoples’ cancer needs

Training to improve cultural sensitivity

Increasing the engagement of men and families

Limitations

Discussion

Barriers, strengths, and solutions

Storytelling via video

Conclusion

Footnotes

Appendix 1

Acknowledgements

Authors’ note

Declaration of conflicting interests

Funding

ORCID iDs

References