Original Research
Jul 2022
Peer-Reviewed

Arts-Based Research Methods to Explore Cancer in Indigenous Communities

Aislinn C. Rookwood, MPH, Mariah Abney, Hannah S. Butler-Robbins, Danielle Marie Westmark, MLIS, and Regina Idoate, PhD
AMA J Ethics. 2022;24(7):E563-575. doi: 10.1001/amajethics.2022.563.

Abstract

Background: Indigenous peoples experience an inequitable burden of cancer compared with other populations. The arts can serve as a culturally relevant cancer intervention and research method.

Methods: A scoping review was conducted to determine how arts-based research methods have been used to address cancer in Indigenous peoples. Literature searches identified 129 publications; 32 were selected for review. The following data were extracted: communities employing arts-based cancer research, cancer control continuum stages, cancer types, art forms, and methodologies.

Results: Most studies were conducted in the United States. Art as research and sound art forms were the most utilized arts-based methods. Cancer types and control continuum stages were not often specified.

Conclusions: Culturally responsive, arts-based methods can enhance research and education across the cancer-control continuum with Indigenous populations.

Art as Data Sources

The arts can serve as the core of an intervention (eg, art therapy, narrative medicine) and as a method of research (ie, arts-based research). There is a growing movement to diversify the academic research environment by treating the arts as an empirical source of information and to expand our understanding of what art is to include what art does.1 Arts-based research (ABR), a method of inquiry that recognizes artistic expressions as ways of knowing, uses artistic expression and the artistic process as a primary mode of inquiry to understand and examine the experience of both researchers and research participants.1 In particular, ABR has been used to explore, illustrate, define, treat, and explain cancer across the control continuum.2,3,4,5

In health research, ABR is commonly utilized with Indigenous populations as a culturally appropriate means of engagement.6,7,8 A recent systematic review of Indigenous research methods (IRMs) found that the following most cited methods were general Indigenous frameworks: Western methods in an Indigenous context, community-based participatory research, storytelling, and culture- specific methods.9 ABR was not explicitly identified as an IRM; presumably, it was included under storytelling and culture-specific methods.9 Of the 47% of articles focused on health, one investigated cancer.9

Although data are sparse, globally, some cancers, such as lung cancer and cervical cancer, disproportionately affect Indigenous populations.10,11 Cancer is a leading cause of death for American Indian and Alaska Natives (AI/ANs).12 Over the past 20 years, death rates for many cancers increased for AI/AN while decreasing for all other groups,12 and gaps for many cancers continue to widen.13 Despite the significance of this health disparity, there is a need for more community-focused and culturally appropriate cancer research and education specific to Indigenous communities.14,15,16

The objective of this scoping review was to identify literature reporting use of ABR methods with Indigenous populations to explore the ways that such methods are used across the cancer control continuum (CCC)—from cancer prevention through survivorship—in what we hereafter refer to as arts-based cancer research (ABCR).

Methods

This scoping review is reported in accordance with the preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. In October 2020, we used strategies designed by a medical librarian (ie, PRISMA) to search published literature for the concept of ABR in cancer research and health education with Indigenous peoples (see Figure). We limited our review to cancer, excluding other chronic illnesses, because cancer is a topic of interest to our local Indigenous community.17 Using a combination of subject headings and keywords (see Supplementary Appendix), we searched MEDLINE via PubMed, Embase, Scopus, PsycINFO via EBSCO, and CINAHL via EBSCO. Language filters were applied to limit retrieval to English and Spanish language articles. Published letters, comments, and reviews were excluded. The results were exported to the citation manager RefWorks (legacy), where the automatic duplicate finder removed duplicates.

Figure. PRISMA Flow Diagram

figure1-org2-2207

Adapted from Tricco, Lillie, Zarin, et al.18

Literature selection was performed by 3 reviewers in 2 steps: (1) review of article title and abstract and (2) review of the full-article text. Each review required reviewer consensus meetings to resolve disagreements. Thirty-two of 129 articles screened were selected for inclusion in this review and evaluated by an analysis team to extract the following data: (1) communities employing ABCR, (2) stages in the CCC,19 (3) cancer types, (4) art forms, and (5) methodologies employed. To classify ABR studies, we identified studies utilizing art as a method of inquiry as “art as research,” studies utilizing art to support qualitative inquiry as “art in research” and investigations of artistic topics as “research about art.”20 Terms describing the data extracted are defined in Table 1.

Table 1. Description of Data Extracted
Data Extracted Definition
Demographics

 

Indigenous community Who participated in the study
Country Where the study took place
Stages in CCC19

 

Etiology Includes gene-environment interactions, infectious agents, environmental factors
Prevention Includes tobacco control, diet, physical activity, sun protection, HPV vaccine
Early detection Includes screening and testing
Diagnosis, treatmenta Includes shared and informed decision making and treatment
Survivorship Includes coping and health promotion for survivors
Nonspecific Two or more CCC stages identified or discussed holistically
Cancer types  
Type of cancer Specific type of cancer identified
Nonspecific Two or more cancer types identified or discussed holistically
Art forms20  
 Visual Includes 2- and 3-dimensional art forms
 Sound Includes radio, soundscape, and storytelling
 Performing Includes dance and theater
 New media Includes digital media, such as virtual reality
 Literary Includes poetry and short stories
 Multiple Two or more art forms identified
ABR methods20  
Art as research Art utilized as a method of qualitative inquiry
Art in research Art to support qualitative inquiry
Research about art Inquiry into art-related topics without (re)creating the object or installation under study
Abbreviations: ABR, arts-based research methods; CCC, cancer control continuum; HPV, human papillomavirus.
a Diagnosis and treatment were collapsed into one category, as literature that identified diagnosis also referenced treatment.

Results

The majority of the articles (60%) did not specify the Indigenous communities the researchers were working with; therefore, we report our findings by the country in which the ABCR took place. Twenty-one publications (65.6%) reported on research conducted in the United States. Five publications (15.6%) were specific to Australia and 4 publications (12.5%) were specific to Canada. Our results also included one publication specific to New Zealand (3.1%) and one publication specific to Peru (3.1%).

Many publications were not specific to one stage of CCC or cancer type (see Table 2). Publications dealing with survivorship (18.8%) and early detection (15.6%) were the most frequent, followed by publications dealing with prevention (6.3%) and diagnosis and treatment (3.1%). Etiology was not identified in any publications. The most frequently identified cancer types were gynecological, breast, and colorectal cancer.

Table 2. Publications Categorized by Cancer Control Continuum Stage and Cancer Type
Publications No.(%)
CCC stage19  
Not specific 18 (56.3)
Survivorship 6 (18.8)
Early detection 5 (15.6)
Prevention 2 (6.3)
Diagnosis and treatment 1 (3.1)
Etiology 0 (0.0)
Cancer type  
Not specific 14 (43.8)
Gynecological 7 (21.9)
Breast 6 (18.8)
Colorectal 2 (6.3)
Head and neck 1 (3.1)
Lung 1 (3.1)
Skin 1 (3.1)
Abbreviation: CCC, cancer control continuum.

In Table 3, it can be seen that publications dealing with sound art forms, such as telling yarns or stories, were the most frequent (34.4%), followed by multiple forms (21.9%), visual form (18.8%), and new media (15.6%). Publications dealing with performing and literary forms were the least frequent. Over half of the publications utilized art as research (59.4%) as their methodology. In these publications, portraiture, storytelling, and theater served as the inquiry method itself. Research about art was identified in 9 of the selected publications (28.1%). Examples include investigations into the use of video vignettes and informational art cards in interventions. Four publications utilized art in research (12.5%), including drawing accompanied by qualitative inquiry.

Table 3. Publications Categorized by Art Forms and Arts-Based Research Methods
Publications No. (%)
Art forms20  
Sound 11 (34.4)
Multiplea 7 (21.9)
Visual 6 (18.8)
New media 5 (15.6)
Performing 2 (6.3)
Literary 1 (3.1)
ABRMs20  
Art as research 19 (59.4)
Research about art 9 (28.1)
Art in research 4 (12.5)
Abbreviation: ABRM, arts-based research method.
a Not included in Wang et al.20

A detailed description of all data extracted from each article can be found in Table 4.

Table 4. Data Extracted From Literature Review
Country Indigenous Community CCC Stage19 Cancer
Type
Art
Form20
ABRM20 Reference
Australia

Aboriginal, Torres
Strait Islander

Not specific Not specific New media AAR Ash
201021
Australia Aboriginal Not specific Not specific Multiple AIR Bernardes
202022
Canada First Nations, Metis Prevention Breas Visual RAA Bottorff
201423
US AI/AN Not specific Breast Visual AIR Chilton
201324
Australia Aboriginal Not specific Not specific Literary AAR Clague
201025
US AN Not specific Colorectal New media RAA Cueva
201326
US AN Not specific Colorectal New media RAA Cueva
201427
US AN Not specific Not specific Multiple AIR Cueva
201428
US AN Not specific Not specific New media RAA Cueva
201529
US AN Not specific Not specific New media RAA Cueva
201630
US AN Not specific Not specific Performing AAR Cueva
201031
Peru Shipibo Not specific Cervical Multiple AAR Darivemula
201832
US Chamorro Survivorship Breast Sound RAA Duenas Manglona
201033
NZ Māori, Tangata
whenua, Pākeha
Survivorship Not specific Sound AAR Egan
201634
US Winnebago Tribe
of Nebraska
Diagnosis, treatment Head, neck Visual AAR Gilbert
202035
US Comanche Not specific Breast Sound AAR Haozous
201036
Canada First Nations Early detection Cervical Visual RAA Hislop
199637
US AI/AN Early detection Cervical Sound AAR Hodge
199638
US AI/AN Survivorship Not specific Sound AAR Hodge
201639
US Native Hawaiian Early detection Breast Sound AAR 200840
Canada Mi’kmaq Early detection Cervical Sound AAR MacDonald
201541
US Lakota Prevention Lung Sound AAR Margalit
201342
US Osage Not specific Skin Visual AAR McWilliams
202043
Australia Aboriginal, Torres
Strait Islander
Not specific Not specific Multiple AAR Meiklejohn
201944
US AI/AN Survivorship Not specific Sound AAR Pelusi
200545
Canada Aboriginal Not specific Breast Multiple AAR Poudrier
200846
US AN Survivorship Not specific Performing RAA Sharma
201647
US Yakama Early detection Cervical Sound AAR Strickland
199648
US AI/AN Not specific Not specific Multiple RAA Vogel
201349
US Lumbee, Cherokee, Coharie,
Waccamau Siouan
Survivorship Not specific Visual AAR Warson
201250
US Coharie,
Waccamaw Siouan
Not specific Breast Multiple AAR Warson
201351
Australia Indigenous Not specific Not specific Sound AIR Yerrell
201652
Abbreviations: AAR, art as research; AI/AN, American Indian/Alaska Native; AIR, art in research; AN, Alaska Native; RAA, research about art.

Discussion

Conducting health research and education in culturally relevant ways is vital to their success with Indigenous communities.53 IRMs existed well before precolonization,54 with their own theoretical constructs and protocols that should be respected and acknowledged in research conducted with Indigenous communities.55,56 ABCR aligns with Indigenous knowledge systems in exploring and generating knowledge through painting, drawing, crafting, and storytelling.53 We have identified 4 areas of opportunity to support ABCR with Indigenous populations based on the results of this review.

Extension of ABCR to other Indigenous communities. In the majority of publications in this review, ABCR was conducted in the United States. According to the United Nations,57 Indigenous peoples account for 476 million individuals across 90 countries worldwide. There is an opportunity to apply ABCR methods in other American (eg, the Mayans in Guatemala) or European (eg, the Basque in Spain) communities not found in this review. Furthermore, many publications did not specify the Indigenous communities involved in the research but instead stated the countries where the research occurred. Identifying and acknowledging Indigenous communities not solely by the geographical boundaries created postcolonization but as their own sovereign units of identity would decolonize research and recognize ABCR as an IRM.58

Extension of ABCR to other cancer types. Over half of the articles reviewed were not specific to one cancer type. The conceptualization of cancer as a disease that can spread to many parts of the body is representative of Indigenous worldviews that we are all related.55,59,60,61 This holistic perspective aligns with Indigenous approaches to healing, which include body, mind, and spirit.62,63 There are more than 100 types of cancer,64 yet only 5 cancer types were studied. These included most of the leading causes of cancer deaths in Native Americans. Prostate cancer, however—a leading cause of cancer death among AI/AN men12—was not mentioned and is arguably worth exploration.

Extension of ABCR to all CCC stages. No publications were identified that used ABCR methods to explore cancer etiology. ABCR (eg, art in research) could be integrated in research on cancer etiology examining environmental factors, genetic factors, gene-environment interactions, medication exposures, infectious agents, and health behaviors related to cancer.19 Following the transtheoretical model of health behavior change,65 arts could also be studied as a means to stimulate changes in health behaviors that could help prevent cancer. In this way, ABCR could support prevention efforts at this relatively uninvestigated CCC stage.

Extension of ABCR to other artistic mediums. Sound and multiple art forms were most often employed in ABCR projects with Indigenous populations. Only one article was found utilizing literary art forms. Poetry could be explored as a culturally responsive way to conduct literary-based research that honors Indigenous orality.66,67 Two articles identified performing art forms. Theatre of the Oppressed, a methodology that explores non-oppressive experiences and discusses difficult social topics,68 has been successfully employed with Indigenous populations69 and could be utilized to address cancer. Tecno-sovereignty, an emerging ABR method that examines cross-cultural and intercultural Indigenous innovations from digital media, old electronic analog media, and traditional Indigenous media, is yet another possiblity.70 Integrating literary, performing, and media-based art forms into cancer research could create new methods that align with Indigenous values.70,71

Limitations

Our search terms for ABR methods included prominent methodologies, such as photovoice and storytelling, and, for Indigenous populations, included common regional terms (see Supplementary Appendix). It is possible that not all publications were identified based on the search terms, as these terms are not standardized internationally. Similarly, publications in languages other than English or Spanish were excluded. The CCC model selected did not include end-of-life care and instead included noncurative care in the treatment stage. The literature could be further analyzed to determine ABCR uses in palliative care.

Conclusion

This review details culturally responsive methods of cancer inquiry and education that can be employed with Indigenous populations to enhance research across the CCC. Understanding existing ABCR studies and their effectiveness can guide researchers in designing projects that acknowledge Indigenous knowledge systems and support more ethical ways of generating knowledge. Integrating ABCR can increase the cultural relevance of cancer research, education, and interventions for Indigenous communities. Future qualitative studies to address cancer in Indigenous populations should consider integrating ABCR.

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Citation

AMA J Ethics. 2022;24(7):E563-575.

DOI

10.1001/amajethics.2022.563.

Conflict of Interest Disclosure

The author(s) had no conflicts of interest to disclose.

The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.