Background

Rates of cancer are dramatically increasing for Indigenous people in Canada and represents one of the leading causes of death [1,2,3]. First Nations are one of three constitutionally recognized Indigenous groups in Canada, along with Inuit and Métis, each with their own distinct practices, identity, and cultural protocolsFootnote 1 [4]. Advancements in survivorship care have shown that holistic approaches that are tailored to specific needs of survivors can increase survival rates and enhance quality of life [4,5,6,7]. However, survivorship for First Nations peoples is not well understood and a better understanding is necessary to provide culturally safe and responsive healthcare for positive outcomes [8].

Spirituality is deeply embedded in holistic healing for Indigenous people and has shown to impact treatment decisions and survivorship healing [9,10,11,12]. A recent systematic review highlighted the importance of spirituality in survivorship for Indigenous peoples, reporting that it was embedded within the cancer journey impacts outcomes [8]. Within a western context, spirituality often involves the interpretation of life’s purpose as well as illness and death [13,14,15,16]. However, spirituality among Indigenous peoples [17] is complex and “deeply embedded in each person’s own cultural traditions, which may well involve knowledge and practices that are sacred to those traditions and can be tapped in ways that differ somewhat with each tradition” (p.13). While spirituality is intertwined within day-to-day life for many Indigenous cultures, limited research exists on spirituality in cancer survivorship for First Nations people in Canada.

The purpose of this study was to explore the meanings of spirituality in cancer survivorship healing with First Nations people, the largest Indigenous population in Canada. The two primary research questions are: 1) what is the meaning of spirituality in cancer survivorship and (2) how do First Nations people incorporate spirituality into cancer survivorship healing?

Methods

This study is part of a larger arts-based research project that created and disseminated cancer survivorship knowledge with First Nations and Métis peoples as a foundation for developing culturally responsive psychosocial interventions. Full details of the larger study are published elsewhere [18]. In this aspect of the project, we conducted a qualitative descriptive analysis [19, 20] to explore the meaning of spirituality for study participants with a focus on cultural and socio-historical factors that impact cancer survivorship.

Data collection

Thirty-one out of the 43 participants (72%) who took part in the larger study and discussed spirituality as part of cancer survivorship were included in this study. Participants included 29 cancer survivors and two family caregivers. A cancer survivor was anyone who had been diagnosed with cancer, a description that is consistent with the National Coalition for Cancer Survivorship (NCCS) definition of survivorship as “the experience of living with, through, and beyond a diagnosis of cancer” [21]. Recognizing that family members are an integral cultural support for First Nations people [21, 22], family caregivers of cancer survivors were invited to participate in all aspects of the data collection.

Data for this study were generated through sharing sessions (n = 8) and individual interviews (n = 31). All interview participants attended at least one sharing session, where they were familiarized with the research project and their experiences with cancer were explored. Sharing sessions were opened by an Elder and co-facilitated by community members and researchers with backgrounds working with First Nations people. Each sharing session was attended by four to 16 participants, lasted approximately 90 min, and was structured around participants’ experiences of survivorship and their engagement with cultural resources. Questions that guided group discussions included the following: (1) “what are your main challenges going through cancer,” (2) “what are your main sources of support,” and (3) “where do you find strength and resilience?”

During the first sharing session, participants were each offered a camera and a journal as optional methods of expressing their cancer survivorship experiences. All participants opted to use their phone to take pictures. Individual interviews were held 2 to 4 weeks later to discuss photographs and/or journal entries and explore participants’ cancer experiences in further depth. This paper describes results from the sharing sessions and interviews as they relate to spirituality in cancer survivorship.

Analysis

Interviews and sharing sessions were audio-recorded and transcribed verbatim, then entered in NVIVO (version 11) qualitative software. Data were inductively analyzed into descriptive themes related to meanings of spirituality and the ways participants incorporated spirituality into cancer survivorship.

Ethics statement

This research was approved by the Research Ethics Board at University of Ottawa and the community councils from each participating community and followed principals of the Tri-Council policy statement Chapter 9: Research Involving the First Nations, Inuit, and Métis Peoples of Canada. We focused on strengths-based narratives of resilience and survival as a counter-narrative to the often pathologizing and stigmatizing stories that historically dominate discourse with Indigenous peoples.

Results

Sample characteristics

Participants (n = 31) were from five First Nations communities in three Canadian provinces (British Columbia, Ontario, Quebec). Just over half of participants had been diagnosed with breast cancer (n = 19; 61%), followed by the kidney (n = 4; 12.9%), and GI (n = 3; 9.7%). Cancers of the adrenal glands, colon, lymph nodes, prostate, rectum, and skin were also described by one participant each, and two participants (6.5%) described having more than one type of cancer. See Table 1 for a description of the sample demographics.

Table 1 Participant characteristics
Full size table

Data revealed in-depth accounts of spirituality in cancer survivorship. Spirituality was described as having multiple dimensions and participants spoke of different ways they incorporated spirituality into their cancer healing.

Meanings of spirituality in cancer survivorship healing

Three themes emerged in which spirituality provided meaning in cancer survivorship healing. Spirituality was expressed as a complex phenomenon that (1) interconnected self with cultural roots and practices, (2) merged the body and mind as integral to holism, and (3) gave meaning, strength, and faith in the cancer journey.

Interconnected self with cultural roots and practices

First Nations people described spirituality as grounded within their culture and involved a higher power that was experienced through the natural world, cultural traditions, historical stories, and ontological beliefs. Spirituality connected people to their cultural beliefs and practices in ways that fostered identity and community.

That’s when you remember who you really are, when you remember all of that. …you become more respectful of everything… . realizing that everything has energy and we’re all part of that and we all go back to that too… (Participant Q)

Participants stated that cultural forms of spirituality provided a sense of connection to their traditional roots and spirit world. Spirituality was described as being embedded in cultural traditions, connecting people with the Creator, ancestors, community, and nature. Cancer survivorship was depicted as a journey that renewed cultural forms of spirituality that were grounded in their traditional beliefs and ways of living in community.

It is so important to be able to go back to our roots. I think that’s what happens to anybody who is faced with this kind of dire situation. They need something comforting to fall back on and that’s what you know your culture or your language is, uh your traditions, and your beliefs. (Participant X)

Merged the body and mind as integral to holism

For cancer survivors, spirituality merged their physical bodies to the nonphysical aspects of healing, coping, and recovery. This connection extended beyond the impacts of medical treatments, and involved the ethereal and natural worlds as integral to holism.

I have to go for walks in the bush, and stuff like it just brings me balance and so you know, I felt that was part of my healing process. You know, like the first chemo I had; my husband and my son and I went for a walk out in the bush. I like being out in the bush and that brings me balance and it’s, you know, a need that I have in my life so I think that that, along with the healing, you know, that was a part of my healing process. (Sharing session 1)

My Dad, he’d always say, “You know, healing begins, it begins at the root, because if you don’t take care of the root it just carries on through the rest of the tree.” …If we don’t do to our spiritual roots of our illness, it’ll just, you know, you can get cut but you keep the same pattern, the same hurt…. You’ll regrow your tumor. You’ll even be worse. (Sharing session 3)

Gave meaning, strength, and faith in the cancer journey

For many participants, spirituality was central to coping with a diagnosis of cancer and finding meaning in having the disease. Survivors spoke of their cancer experiences as part of a larger life purpose, with many expressing that cancer was in the Creator’s plan and that this belief gave them a sense of peace and gratitude for their cancer journey.

I’d say, “Why me?” Why not those people you know that are walking the street that don’t care about their lives?” I used to say that, think that about myself but an elder told me, “I think the reason why the Creator did this to you is so you can see how it feels and how you know, maybe you can help your people.” And that’s how I look at it now…. I started giving thanks to it [the cancer] because it gave me a whole new outlook on life because without that cancer I would not have put a lot of my belief in the faith and medicines and the people with their gifts... And everyday, I said thank you because I was given that gift. (Participant S)

Spirituality provided survivors with faith that things would work out. Some participants attributed healing to the strength they gained from ancestors in the spirit world.

My beliefs during this whole thing [experience of cancer] is that the Creator has a master plan. I have belief and faith. I try not to get angry and frustrated or take on anything negative. This experience really opened my eyes. (Participant R)

Practices that incorporated spirituality into cancer survivorship healing

Survivors spoke of different practices in which they engaged to incorporate spirituality into cancer survivorship. They included giving thanks, attending places of spiritual connectedness, singing, praying, and engaging with the sun and moon.

Giving thanks

Survivors described the practice of giving unconditional thanks for their survivorship journey. Giving thanks facilitated the appreciation of what they had in life, including positive and negative experiences.

I just give thanks. …. in our culture you don’t want to ask for anything, you want to give thanks for what you already have. And then things start coming. (Participant L)

And uh, so rather than feeding into whatever cancer I had through anger, through self-pity, through frustration, you know, I changed my outlook and I owned it and I started talking to it and I started giving thanks … and it didn’t matter if, you know, it was a good or bad experience. … I said thank you because I was given that gift. (Sharing session 1)

Attending places of spiritual connectedness

Survivors spoke of attending places that invoked a sense of spiritual connectedness, such as spiritual centers, nature, groups, or churches. These places allowed people to feel safe with their beliefs; they expressed that a place to connect and discuss their experiences was an important part of healing.

I spent so much time going over to Odawa [native friendship centre]. It became like my church; I’d just hang out there … I just go there sometimes even without a purpose, even to hang around by and with people and feel the energy and smell the smudging in the air and stuff, just to, I’d feel connected and it was a safe place for me too, where everyone else was there because they valued their Aboriginal traditions, or they’re there to find out about them, and you know we can joke about stuff but the outside world that people don’t get about us and things like that, so it was a very safe place for me to go. (Participant X)

Singing

Singing was a practice that many participants reported, describing it as providing strength, uplifting spirits, and reducing fear in the cancer healing journey.

…songs, songs matter. [We] can sing about the goodness of water and our earth and what we’re supposed to be here for. Not to suffer, just to keep it going, protect it no matter what. And that’s what we’re here for. (Participant A)

Well when I was seeing our faith healers, while we were in groups, you know, they found that I had my own personal song. So that’s [what I did] when I was on the radiation table. Instead of being scared, I sang it to myself. You know, whenever I feel like really bad, there goes my song. (Participant F)

Prayer and speaking to the Creator

The act of praying or speaking to the Creator was described as a practice by people with cancer and other community members to send support and strength to an individual with cancer.

So she would come home and say “so-and-so is praying for you.” And you just sigh; they don't even know me. And she goes “no - everybody knows you.” You know? So when somebody comes to me or I find out [they have cancer], I tell them, you know, I'll put you in my prayers, I know they work. So when I was sick, I was going through all this. I prayed. And we gather up as many troops as we can and help fight, get them on your side and help. That’s what I did. I prayed hard. (Participant E)

Engaging the sun and moon

Many survivors spoke of turning to the sun and the moon for spiritual strength in their cancer journey. Engaging with the sun involved channeling and absorbing energy and strength inwards, such as from the heat of the sun.

I would look at the sun. I would put my hand towards the sun and I would ask the Creator to give me energy and strength and my angels would decide and my hands would get very, very hot and just that’s how I got rejuvenated from the energy of the sun. It would make me have energy. (Sharing session 5)

Reciprocally, engaging with the moon was described as releasing energy outwards and upwards towards the night sky and moon.

The moon ceremony…Where all the women get together when the moon is out and then you tell your story and then you offer it up, so it don’t come back. Now you’ve let go. Whatever was wrong with me, I offered it to the moon. (Sharing session 4)

Discussion

The goal of this study was to explore the meanings of spirituality in cancer survivorship healing with First Nations people in five communities across Canada. Participants spoke about their cancer experience as a journey that led them to having a greater connections with the Creator, nature, ancestors, and the community around them. Spirituality helped participants derive hope, meaning, and strength from their culture, traditional practices, ceremonies, and beliefs. These findings demonstrate that healing transcended the pathophysiological processes of disease to include cognitive, familial, cultural, and spiritual dimensions. For many participants, spirituality was at the core of their cultural identity and gave balance to healing. Participants described spirituality as a cultural resource in cancer survivorship, a conceptualization that is consistent with previous research that documented spirituality as a complex phenomenon for Indigenous people, closely bound with cultural beliefs and traditional ways of living [17].

For participants in this study, a feature of spirituality was the transformative way it affected their understandings of why they had cancer and their experiences with cancer. Some participants expressed cancer as a spiritual journey, while others saw it as a gift or part of the “Creator’s master plan.” This is a departure from the tendency of people to view cancer as an aggressor or enemy [23]. Studies have shown that attributing negative meanings towards cancer such as being a punishment, can lead to higher levels of depression and anxiety and a poorer quality of life [24,25,26]. A two-phase Canadian study found that women (n = 1012) who ascribed meanings to breast cancer such as “enemy,” “loss,” or “punishment” had significantly higher levels of depression and anxiety and poorer quality of life after 3 years than women who indicated more positive attributes such as “challenge” or “value” [24]. Similarly, the meaning cancer patients (n = 100) ascribed to their pain had a significant impact on pain levels, depression, and coping (p = 0.0001), with “challenge,” “punishment,” and “the enemy” being the least successful in attenuating pain [27].

In previous research, survivors have described cancer as a gift from God that increased their closeness to God [28], with prayer and thanks part of their healing process [29, 30]. A unique manifestation in our study was the mechanism in which spirituality enabled participants to connect with their traditional roots and culture, deriving strength from cultural practices and beliefs. First Nations participants reported that spirituality fused them to cultural traditions and practices, many of which involved engaging with nature, the sun, and the moon.

Cultural activities are highly valued by many First Nations people and spirituality is considered an important aspect of their cultural life [31]. Our findings emphasize the relationship First Nations people maintain with nature and the ways in which spirituality merged their cultural roots and identity with healing and survivorship. These findings are similar to previous research in other parts of the world that document spirituality as interconnecting Indigenous people with their culture and traditions in cancer survivorship [8, 11, 17, 32,33,34,35].

Existing literature highlights the importance of spirituality in cancer survivorship for Indigenous people and underscores the interconnection between spiritual practices with meaning, strength, and belief in the cancer journey following diagnosis [8, 9, 36,37,38]. For example, Indigenous Hawaiian cancer survivors use spiritual practices and herbs with traditional values to supplement medical treatments [37]. A comparison of quality of life outcomes between Indigenous (n = 596) and non-Indigenous (n = 687) cancer survivors in the USA revealed Indigenous survivors scored lower for physical quality of life but higher for spiritual quality of life, and were more likely to experience a sense of purpose following a cancer diagnosis [36]. In our study, spirituality in cancer survivorship was viewed as integral to holism, connecting the body and mind with the metaphysical world.

Similar to our findings, previous research indicates that Indigenous cancer survivors viewed cancer as an opportunity for emotional and spiritual growth that enabled healing [8, 11, 37, 39]. Survivors indicated that spirituality provided opportunities to connect with family and nature and to rediscover or affirm their cultural identity and sense of self [8, 9, 37]. Traditionally, First Nations people have a community-based orientation and an interconnectedness that reaches from family to the broader ancestral and ethereal worlds [40]. Many First Nations people have unique beliefs about healing that involves re-establishing holism through traditional practices and spirituality [4]. In our study, spirituality was described as a mechanism to interconnect family, community, and nature in ways that were distant from mainstream health services. Spiritual practices such as engaging with nature, the sun, and the moon, reinforced the importance of cultural traditions that integrate the inter-connectedness of all things for healing and holism. Our findings echo the idea of spirituality strengthening participants’ cultural values and identity, belief in their journey, and their interconnection to ancestors, community, and nature. These similarities are exemplified by an Indigenous cancer survivor in Hawaii [9] and a participant in our study who described being guided by ancestral spirits:

Hawaiians all have faith in Ke Akua (God). I have faith in our ‘aumakua. I pule (pray) all the time, ask the ‘aumakua to protect us, our ‘aina (land), our ocean, and our beach. You have to have faith in spiritual thinking [9].

I still don’t know where the strength for that came from. Maybe from my Ojibway grandfather, because as the elder told me, he had seen in his prayers that it was my grandfather who had designated me to take care of Niimama (mother). As he left the world, I was coming into it and I already had my marching orders from Mishomis (Sharing 2).

Strengths and limitations

This is the first study known to the authors to examine spirituality in cancer survivorship for First Nations people in Canada. Through semi-structured interviews and sharing sessions, the study provided preliminary evidence regarding the meaning and practices of spirituality in cancer survivorship healing. However, there are a number of limitations. First, participants were recruited to the larger study in order to describe their experiences with cancer and not to discuss spirituality specifically; spirituality emerged in this study as an aspect of survivorship. Therefore, some participants in the larger sample may have omitted discussing spirituality or different aspects of spirituality as this was not specifically probed for during data collection. Second, it is difficult to draw conclusions about similarities or differences in the meaning of spirituality for Indigenous people with cancer in other parts of the country or world due to the dearth of research in this area. Our sample came from five First Nations communities situated in three Canadian provinces, and is not intended to be representative of the 630 First Nations communities that exist across the country [41]. With 92% of participants’ female, gender bias may also be present in our findings. Further research is needed with a larger representative sample that includes the conceptualization of cancer as a blessing or a gift and the impact of spiritual practices on health outcomes.

A strength of our study was the high level of engagement of our participants, many of whom stated that they welcomed the opportunity to share their stories revealing rich robust descriptions of spirituality and spiritual practices. This was possible because of the time we invested in establishing trust in each community, including talking on a local radio program, participating in a cancer awareness fun-run/walk, and meeting with chiefs and elders to demonstrate our commitment. Acknowledging the socio-historical factors such as the ongoing impact of colonization, poverty, and discrimination that continues to affect First Nations people’s health in Canada is important to build open and trusting relationships. Researchers should build extra time and resources into their research protocols to authentically engage and co-produce knowledge with First Nations people.

Conclusion

Advancements in cancer survivorship care have shown that holistic approaches, tailored to unique survivorship needs, decrease cancer burden and enhances quality of life. However, Indigenous people in Canada do not seek survivorship support, and little has been done to tailor survivorship care to their distinct cultural needs. In this study, spirituality has been identified as a key aspect of healing by First Nations cancer survivors, acting as a mechanism that interconnected them with their cultural beliefs and practices and gave meaning and strength in the face of cancer. Incorporating spiritual well-being into treatment plans for all cancer survivors, regardless of culture or religion, can increase psychological wellness and improve the quality of life [42,43,44]. There is a compelling need to develop innovative strategies that incorporate First Nations spirituality into the cancer healing journey. Understanding the role of spirituality in cancer survivorship is important to develop and deliver culturally safe and responsive health services to reduce the burden of cancer and ultimately improve health outcomes for First Nations people and communities in Canada.