Cancer Journey for American Indians and Alaska Natives in the Pacific Northwest

Abstract

Purpose/Objectives To describe the experiences of American Indian and Alaska Native cancer survivors to improve understanding of the trajectory of cancer treatment. Research Approach Qualitative focus group research. Setting Rural and geographically isolated American Indian and Alaska Native communities in the Pacific Northwest. Participants 30 American Indian and Alaska Native cancer survivors or caregivers. Methodologic Approach The authors analyzed data from two focus groups with cancer survivors by using thematic analysis informed by indigenous methodologies. Findings Based on focus group findings, the authors developed a conceptual model of the cancer experience called Rough Waters. Participants described their cancer experience as a collective journey involving family and friends and requiring resources to offset challenges along the way. Dominant themes were delays, isolation, communication, money, advocacy, spirituality, and family involvement. Conclusions American Indians and Alaska Natives in the Pacific Northwest have special cultural needs during cancer care. The current study provides examples that can guide patient–provider interactions. Interpretation Using the metaphor of cancer as a journey, clinicians can begin a dialogue to identify what will impede or assist the cancer journey for their American Indian and Alaska Native patients.

Spirituality, Quality of Life, and End of Life Among Indigenous Peoples: A Scoping Review

“…While many articles were not specifically related to indigenous spirituality at EOL, all eluded to spirituality in some form. Of the 30 articles, 16 addressed indigenous spirituality (Craft et al, Haozous et al, 2016;Johnston et al, 2013;McGrath, 2007;McGrath & Phillips, 2008aO'Brien et al, 2013;Pelusi & Krebs, 2005;Poroch, 2012;Roh et al, 2018;Schrader et al, 2009;Walker & Thompson, 2009). The findings from these studies reflected the unique ways in which spirituality is perceived among indigenous groups as well as the diversity of the methodologies used.…”

“…For instance, with colonialism and the advent of boarding schools, many indigenous people were introduced to Christianity, which resulted in a dual-belief system. In several articles, spirituality was represented as traditional, Christian, or a mixture of these beliefs (Gifford et al, 2019;Haozous et al, 2016;McGrath & Phillips, 2008a;Poroch, 2012;Roh et al, 2019;Walker & Thompson, 2009). Therefore, from an indigenous standpoint, spirituality takes on various characteristics and is uniquely expressed.…”

“…Indigenous family networks often are large and extend beyond the immediate family to include community members (Pelusi & Krebs, 2005). In health care settings, accommodations for large families are needed, as limiting family visitation (by time and number of visitors) can be problematic for family members who want to remain at the bedside to provide support (Haozous et al, 2016). The longing to be surrounded by family when death approaches is a common desire for many indigenous people (Hampton et al, 2010;Johnston et al, 2013;McGrath, 2007;McGrath & Phillips, 2009;Schrader et al, 2009).…”

“…End-of-Life Death Rituals. Fourteen of the articles contributed to an EOL theme (Burhansstipanov et al, 2010;Colclough & Brown, 2014;Dennis & Washington, 2018b;Eide, 2007;Gifford et al, 2019;Hafner, 2016;Hampton et al, 2010;Haozous et al, 2016;Haozous & Knobf, 2013;Johnson et al, 2013;McGrath & Philips, 2008b, 2008cRoh et al, 2018;Ruml, 2016). Important rituals and ceremonies were expressed in these articles.…”

Perceptions of cancer treatment decision making among American Indians/Alaska Natives and their physicians

“…However, while we were able to adjust for comorbid disease and to discern that access to insurance was not causal (all patients had Medicare), the dataset was too limited to further clarify the systems, provider, or patient‐driven mechanisms of non‐adherence to guideline‐concordant care. While individual health systems or providers no doubt contribute to inadequate care, we postulated that aspects of the patient–provider relationship and its impact on treatment decision making may also play a role .…”