qualitative research study about indigenous peoples

Mental Health and Substance Use Co-Occurrence Among Indigenous Peoples: a Scoping Review

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• Published: 28 July 2023

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• Breanne Hobden   ORCID: orcid.org/0000-0002-8489-6152 1 , 2 ,
• Megan Freund 1 , 2 ,
• Jennifer Rumbel 3 , 4 ,
• Todd Heard 1 , 4 , 5 ,
• Robert Davis 1 , 2 ,
• Jia Ying Ooi 1 , 2 ,
• Jamie Newman 6 ,
• Bronwyn Rose 7 ,
• Rob Sanson-Fisher 1 , 2 &
• Jamie Bryant 1 , 2  

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This scoping review examined the literature on co-occurring mental health conditions and substance use among Indigenous peoples globally across (i) time, (ii) types of conditions examined, (iii) countries, (iv) research designs, and (v) participants and settings. Medline, Embase, PsycInfo, and Web of Science were searched across all years up until October 2022 for relevant studies. Ninety-four studies were included, with publications demonstrating a slight and gradual increase over time. Depressive disorder and alcohol were the most examined co-occurring conditions. Most studies included Indigenous people from the United States (71%). Ninety-seven percent of the studies used quantitative descriptive designs, and most studies were conducted in Indigenous communities/reservations (35%). This review provides the first comprehensive exploration of research on co-occurring mental health and substance use conditions among Indigenous peoples. The information should be used to guide the development of strategies to improve treatment and prevention.

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Both between and within countries, Indigenous’ Peoples represent diverse groups with unique perspectives on health and wellbeing. Broadly, Aboriginal and Torres Strait Islander people in Australia view health with the perspective that a holistic and whole-of-life approach is needed to achieve positive health and wellbeing outcomes (Australian Government, 2017 ). This sentiment is echoed by Indigenous groups in the United States (US), Canada, and Aotearoa (New Zealand), where physical health is linked with mental, social, and spiritual wellbeing (Gall et al., 2021 ; Hodge et al., 2009 ; Mark & Lyons, 2010 ). Colonisation continues to impact the health of Indigenous people through ongoing intergenerational trauma and discriminatory systemic policies (Australian Institute of Health & Welfare, 2022 ; O’Neill et al., 2018 ; Te Kōmihana Whai Hua O Aotearoa (New Zealand Productivity Commission), 2022). This impact is apparent through the disproportionate prevalence of mental health (MH) conditions and severity of substance use among Indigenous people. In Australia in 2011, MH conditions and substance use disorders contributed to 23% of the total burden of disease for Aboriginal and Torres Strait Islander people, the largest burden out of any disease group (Australian Institute of Health & Welfare, 2016 ). Similar overrepresentation of MH conditions and substance use has been reported for Maori people in Aotearoa (Ministry of Health New Zealand, 2018 ). Reducing the impact and severity of MH conditions and substance use is important for improving the health and wellbeing of Indigenous people.

While previous research has examined the published literature examining MH conditions or substance use among Indigenous peoples (Kisely et al., 2017 ; Nelson & Wilson, 2017 ), the scope of research examining the co-occurrence of these conditions is less clear. Co-occurring conditions often have an exacerbating and debilitating impact on the health of affected individuals (Leung et al., 2016 ). Co-occurrence is associated with greater severity of MH symptoms, higher quantity of substance use, increased disability or impairment, poorer social functioning, and increased risk of suicide (Burns & Teesson, 2002 ; Leung et al., 2016 ; Quello et al., 2005 ). Co-occurring conditions have also been reported to significantly impact family and carers (Biegel et al., 2007 ; September & Beytell, 2019 ). Considering co-occurring conditions, as opposed to individual conditions, provides a more person-focussed and integrated approach to wellbeing (Mercer et al., 2016 ). Integrated treatment of co-occurring conditions has also demonstrated improved treatment outcomes (Leung et al., 2016 ). Despite this, most research and treatment provision continues to adopt an approach where researchers and clinicians focus on singular conditions (McCartney, 2016 ; Teesson et al., 2014 ).

To the authors’ knowledge, no previous review has systematically examined the literature for co-occurring MH conditions and substance use among Indigenous’ people, nationally or internationally. Scoping reviews allow exploration of the volume and coverage of particular topics to identify gaps, concepts, and key characteristics, as well as informing the feasibility of more detailed systematic reviews (Munn et al., 2018 ). The number of research outputs in an area of research can be considered a proxy for resource and investment in a particular field (Ebadi & Schiffauerova, 2016 ), allowing funding bodies to identify areas where research activity is lacking. Furthermore, examining the scope of the literature, such as location, design, setting, and focus, will allow the identification of research gaps to inform future research and policy directions regarding co-occurring MH conditions and substance use among Indigenous peoples (Munn et al., 2018 ).

To systematically review studies examining co-occurring MH conditions and substance use among Indigenous peoples globally to determine the scope of publications in terms of (i) volume over time, (ii) MH conditions and substance conditions examined, (iii) countries where the research was undertaken, (iv) research designs implemented, and (v) included Indigenous groups and settings.

Methodology is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) scoping review guidelines (Page et al., 2021 ; Tricco et al., 2018 ).

Indigenous Leadership for This Review

This review concept arose through collaboration between Indigenous and non-Indigenous researchers and those working in the health field on an Australian Rotary Health Fellowship to understand the co-occurrence of MH conditions and substance use among Aboriginal and Torres Strait Islander Peoples. Co-authors JR, TH, RD, JN, and BR are Aboriginal members of the team and formed the Aboriginal Advisory Group for this project. In addition to lived experiences, the Aboriginal Advisory Group has expertise in mental health, substance use, and health services. The remaining authors are non-Indigenous. The aims of the review were discussed and revised through ongoing collaborative discussion with the whole research team. Study methodology and interpretation of results were discussed and reviewed by Indigenous and non-Indigenous team members throughout the project.

Search Strategy

A medical librarian was consulted to develop and implement the search strategy. Medline, Embase, PsycInfo, and Web of Science were searched across all years up until 11th October 2022. Key terms included “mental disorders”, “substance related disorders”, “comorbidity” and “Indigenous peoples”. A full list of the search terms used can be found in Appendix 1 . A manual review of the reference lists of included papers was performed to identify any additional articles not identified through the search strategy.

Inclusion and Exclusion Criteria

Studies were included in the review if they:

Focussed on Indigenous peoples. Studies were identified through the use of terms such as “Indigenous”, “First Nations”, “Aboriginal” or referring to the name of a specific Indigenous peoples (e.g. Maori). If the research included both Indigenous and non-Indigenous peoples, comorbidity data needed to be presented separately for the Indigenous cohort or more than 50% of the sample needed to be Indigenous to be included. This criterion was intended to reduce the number of studies that incidentally included Indigenous peoples but did not specifically explore comorbidity among these groups.

Reported on comorbidity across at least one MH condition and one type of substance use. The type of comorbidity examined, and the determination of comorbidities was deliberately broad to enable a more inclusive scoping approach (see Box 1).

Described data-based research, including experimental, quantitative, and qualitative studies.

Box 1 Categorisation of conditions.

Studies were excluded if they:

Exclusively reported on suicide, suicide ideation, suicide attempts, and learning disorders as these are not considered MH conditions.

Exclusively focussed on gambling or gaming addictions as these are not substance-based. Studies which included gambling or gaming addiction and substance addiction were included, but only substance data were extracted.

Focussed on basic sciences (e.g. genetic studies).

Were commentaries, case studies, conference abstracts, theses, or reviews.

Were published in a language other than English.

Article Screening

Paper titles and abstracts were reviewed against the inclusion criteria by three authors (BH, JR, and JYO) and a research assistant. The first 108 papers were independently coded by two researchers (BH and JR or the research assistant) and checked for agreement. There was an 88% agreement rate between coders after initial coding. Discrepancies were discussed until consensus was reached. Following this, JR and the research assistant screened the remaining studies. All excluded studies were cross-checked by JYO at a later date. BH and JYO reviewed the full texts for final inclusion.

Data Extraction

A data extraction template was created using REDCap electronic data capture tools (Harris et al., 2019 ). This was piloted by JB, MF, and JYO with BH making amendments before commencing full data extraction. The following data were extracted from the included studies: author, year, conditions examined and how conditions were assessed (e.g. diagnostic interview), country, Indigenous population group, research design, sample size, and setting. Studies were categorised into experimental, qualitative, or quantitative descriptive research designs. Experimental studies were then coded as randomised-controlled trials, non-randomised controlled trials, interrupted time series, or controlled before and after studies (Cochrane Effective Practice & Organisation of Care, 2017 ). Study setting was categorised based on anticipated settings for MH conditions and substance use research (e.g. general community, Indigenous communities, MH or substance use services, hospitals), with author derived coding for additional settings (e.g. legal settings, such as detention centres). Where multiple papers were derived from one study, data were extracted for each individual paper due to the different combinations of comorbidities examined across papers resulting from large datasets.

Data Analysis

Frequencies and proportions were used to synthesise the extracted data. A linear regression was performed to examine changes in the volume of publications over time, with a p -value of < 0.05 used to indicate significance.

Figure  1 presents the results of the literature search using the PRISMA flow chart. A total of 6049 citations were identified through the search strategy and 4 through searching reference lists, with 4534 articles retained following the removal of duplicates. A total of 3979 articles were excluded at the title and abstract screening stage, and 555 underwent full text review. Ninety-four articles met the inclusion criteria and were included in the review. For brevity, the frequencies of studies are presented in-text without specific references. The Supplementary file ( S1 ), however, provides the detailed data extraction for each included paper.

Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow chart

Volume of Publications Over Time

While publications demonstrated a statistically significant increase over time from 1990 to 2022 ( R 2  = 0.26, p -value = 0.003), the volume of publications was low across most years. An average of 2.8 papers were published per year since 1990. From 1990 to 2000, there were an average of 1.3 publications per year ( n  = 14 total), which increased from 2001 to 2011 and 2012 to 2022, with an average of 3.4 ( n  = 37 total) and 3.8 ( n  = 42 total) per year, respectively (see Fig. 2 ).

The number of studies examining comorbid mental health conditions with alcohol and other drug use by year

Co-Occurring Conditions Examined

Studies included an average of 2.4 MH condition groupings, and 44 papers examined three or more MH condition groupings. Among these, depressive disorders ( n  = 64, 68% of studies) and anxiety disorders ( n  = 49, 52%) were the most commonly examined, and eating disorders were the least frequently examined ( n  = 6, 6%). MH conditions were primarily measured using diagnostic interviews ( n  = 55, 59%), of which 2 studies used validated screening measures in addition to diagnostic interviews. Of the remaining studies, 20 (23%) used validated screening measures, 5 (5%) used non-validated screening measures, and 11 (12%) used medical records. One (1%) study did not report how MH conditions were measured.

For substance use, studies included an average of 1.9 substances, and 25 papers examined three or more substances. Alcohol was the most frequently examined substance ( n  = 58, 62% of studies), followed by general substance use or grouping of multiple substances ( n  = 45, 48%). Sedatives ( n  = 3, 3%), hallucinogens ( n  = 3, 3%), and inhalants ( n  = 2, 2%) were the least frequently examined substances. Substances were primarily measured using diagnostic interviews ( n  = 44, 47%), of which one also used non-validated screening measures. Of the remaining studies, 20 (22%) used standardised screening measures, 13 (14%) used non-validated screening measures, one (1%) study used both validated and non-validated screening measures, 11 (12%) used medical records, and two (2%) used help-seeking to indicate substance use. Three studies did not report how MH conditions were measured.

There were a broad range of co-occurring conditions examined (see Table 1 ). It was also common for papers to group MH or substance use conditions or to consider these in general terms (e.g. reporting on “substance dependence” or “MH conditions”). Alcohol and depression were the most frequently examined co-occurring conditions ( n  = 17).

Countries Where the Research Was Undertaken

Most studies were conducted with Indigenous peoples from the US ( n  = 67, 71%). Of these, 46 included Native American Indian Peoples, two studies included Indigenous peoples from Alaska, and 12 included both Native American Indian and Alaskan participants. Four studies included Indigenous peoples from the US and Canada, and three studies specifically included Native Hawaiian and other Pacific Islander Peoples. One study included Native American Indian, Alaskan, and Hawaiian people. Fewer studies were conducted in Australia with Aboriginal and Torres Strait Islander people ( n  = 13, 14%); Canada among Indigenous Metis and Inuit people ( n  = 8, 9%); and Aotearoa of which five included Māori people and one included Pacific Islander people ( n  = 6, 6%). While the Pacific Islander groups (i.e. Samoan, Tongan, Cook Islanders) in the latter study are not Indigenous to Aotearoa, they are Indigenous to the Pacific Islands, and therefore, this study was retained. Two studies included Han Chinese people, one study included Malayo-Polynesian Aboriginal people from Taiwan, and one study included Malay people from Malaysia (see Fig.  3 ).

The number of studies examining comorbid mental health and alcohol or other drug use by country. Note: Four studies included Indigenous people from the United States and Canada and have been counted for both countries

Research Designs Implemented

Almost all publications used quantitative descriptive designs ( n  = 91, 97%). One study used a mixed method design, including a qualitative phase followed by a randomised controlled trial. One study used a randomised controlled trial design, and one study used a qualitative design. Among the descriptive studies, 79 (87%) used a cross-sectional design, nine (10%) used a longitudinal design, and two (2%) used a cross-sequential design.

Indigenous Sample and Settings

Sixty-nine (73%) of the included studies included only Indigenous participants, while the remaining 25 (27%) included both Indigenous and non-Indigenous people. Only one study had a sample where more than 50% were Indigenous with the outcomes combining both Indigenous and non-Indigenous data (Woodall et al., 2007 ). The remaining studies that included non-Indigenous participants reported the findings separately for the Indigenous participants. The sample ranged from 15 to 16,640 Indigenous participants, with an average of 1387. Most studies were conducted within Indigenous communities/reservations ( n  = 33, 35%) or a general/population-based sample ( n  = 28, 30%), of which two studies were conducted within the general population and a reservation (see Fig.  4 ).

The number of studies examining mental health conditions with alcohol and other drug use by setting. Note: Some studies included multiple settings and have been counted multiple times. *“Other” settings included a homeless community, veteran affairs services, education facilities, and a remote area mental health service database

The number of studies examining co-occurring MH conditions and substance use in Indigenous peoples has increased over time; however, the average number of publications per year was low. This modest increase does not reflect the growth in research outputs in Indigenous health generally in recent decades (Bryant et al., 2022 ; Derrick et al., 2012 ; Kennedy et al., 2022 ), which has been coupled with growing investment and capacity in the MH field for Indigenous peoples in several countries. A recent review of Aboriginal and Torres Strait Islander health in Australia found that 20.5% of all Indigenous health research conducted from 2008 to 2020 was focussed on MH or substance use disorders (Kennedy et al., 2022 ). There was a peak for paper outputs in 2006. These publications reported on studies that were conducted across a range of years, from 1994 to 2004. Furthermore, nine papers published in 2006 reported the outcomes for four individual studies. Although it is difficult to interpret the reasons for the 2006 peak in paper publications, it may reflect researchers’ capacity to publish in a timely manner rather than any policy or funding factors.

Included studies explored a range of comorbidities. It was common for studies to include generalised groupings of MH conditions or substance use. The co-occurrence of depression and alcohol use was the most examined comorbidity, which likely reflects the high prevalence of both of these conditions (GBD 2016 Alcohol Collaborators, 2018 ; Liu et al., 2020 ). There has been limited exploration of substance use with MH conditions such as eating disorders or bipolar disorders. Similarly, MH comorbidities with opioids and stimulants have been limited, although it is likely that these substances have been included in some studies which have explored general substance use. There is significant scope for research exploring several co-occurring MH conditions and substances among Indigenous people, for both prevalence and prevention or treatment strategies. The method of measuring conditions is an important consideration for future research to ensure accuracy in the data provided. While measurement of MH conditions and substance use varied across the studies, this was primarily conducted via diagnostic clinical interviews. This method provides clinical accuracy; however, it may not account for subthreshold symptoms, which have been found to be a significant contributor to burden and disability (Rai et al., 2010 ). The use of validated MH and substance use measures, which allow for exploration of different levels of severity, may therefore be more relevant for understanding comorbidity burden in Indigenous communities rather than via diagnostic interviews.

A substantial majority of the studies were conducted within the US. The output across countries can likely be attributed to variation in research capacity and support. The US was ranked number one for research outputs from 1996 to 2021, far surpassing Canada, Australia, and Aotearoa’s outputs combined (SCImago, 2022 ). In addition, leading US mental health groups have advocated for addressing co-occurring MH conditions and substance use, as well as a need for integrated health systems (Mental Health America, 2017 ; Substance Abuse & Mental Health Services Administration, 2022 ). This review highlights the need for increased research capacity in co-occurring MH conditions and substance use within distinct and unique Indigenous communities in most countries.

Experimental research is important for providing robust evidence for the effectiveness of treatment approaches. However, only two experimental studies (2%) were identified in this review. This finding is similar to a recent review that found only 2.7% of research on Aboriginal and Torres Strait Islander health in Australia used an experimental design (Kennedy et al., 2022 ). Qualitative research was also only utilised in two identified studies. Qualitative research is important for understanding the views and perceptions of Indigenous people (Auger, 2016 ). It allows insight into the factors that contribute to the co-occurrence of MH conditions and substance use and can better inform future research, policy, and practice. Further investment in Indigenous-led qualitative research is needed to allow for Indigenous people’s knowledge and experience to inform future prevention and treatment-focussed research in this field.

Future Directions

There is a need to increase research examining co-occurring MH conditions and substance use to break down the existing silos in research and treatment and promote integrated care for Indigenous peoples. While consideration of international research can provide some guidance on co-occurring MH conditions and substance use, the unique and diverse Indigenous communities within and between countries require localised data to inform healthcare delivery and policy. Despite several quantitative studies within the US, consideration of prevalence is still needed for all countries to inform needs within distinct communities, specific comorbidities, gender, and age groups. This scoping review intended to provide a surface-level understanding of MH conditions and substance use comorbidity among Indigenous people; however, more in-depth exploration of the research in this area should be considered, such as assessing the quality of quantitative studies and the cultural appropriateness of measures examining MH conditions and substance use. Qualitative research is an important avenue for future work, which will allow for a deeper understanding of strategies for prevention and care that are important for local Indigenous communities. This should be followed by robustly designed experiment studies testing the effectiveness of strategies to prevent and manage co-occurring conditions. Ensuring holistic strategies are developed, accounting for the wider social context in which Indigenous people exist, is also important. This includes consideration of systemic racism and the ongoing, pervasive impact of colonisation.

Limitations

For pragmatic reasons, the search for relevant studies was limited to the English language, which resulted in two studies published in other languages being omitted. This may have included studies that have been published in Indigenous languages. While the search strategy was designed to be broad and capture relevant studies, the diversity of Indigenous groups globally, with hundreds of unique tribes, nations, and clans, may have meant that some studies may have been missed. It was also not possible for the title and abstract screening to be conducted independently by two reviewers in parallel due to staffing constraints, and therefore, this was done sequentially. Nevertheless, all papers returned in the search did undergo independent coding by at least two reviewers. One study did not report outcomes separately for Indigenous and non-Indigenous participants, so some non-Indigenous data was included in the results. However, more than half the participants in this study were Indigenous.

Research commitment and expertise in exploring comorbidity prevention and treatment strategies for Indigenous people is needed. This scoping review highlights several gaps in the field of co-occurring MH conditions and substance use among Indigenous peoples. This includes limited research conducted with Indigenous groups outside of the US and a lack of qualitative or experimental research. Further work is needed to understand the extent and impact of comorbidity among Indigenous people. Future studies should be Indigenous-led with locally informed strategies as well as consultation with Indigenous communities.

Data Availability

Extracted data relevant to the study is available in the Supplementary File ( S1 ).

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Acknowledgements

The authors would like to thank Samuel Lawson (research assistant) for assisting with data coding and Angela Smith (librarian) for assisting with the development of the search strategy.

Open Access funding enabled and organized by CAUL and its Member Institutions BH is supported by an Australian Rotary Health Colin Dodds Postdoctoral Fellowship (#1801108). This project did not receive funding.

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Health Behaviour Research Collaborative, School of Medicine and Public Health, College of Health, Medicine and Wellbeing, University of Newcastle, Callaghan, NSW, 2308, Australia

Breanne Hobden, Megan Freund, Todd Heard, Robert Davis, Jia Ying Ooi, Rob Sanson-Fisher & Jamie Bryant

Equity in Health and Wellbeing Program, Hunter Medical Research Institute, New Lambton Heights, NSW, 2305, Australia

Breanne Hobden, Megan Freund, Robert Davis, Jia Ying Ooi, Rob Sanson-Fisher & Jamie Bryant

Wollotuka Institute, Purai Global Indigenous History Centre, University of Newcastle, Callaghan, Australia

Jennifer Rumbel

Systems Neuroscience Group, Hunter Medical Research Institute, New Lambton Heights, NSW, 2305, Australia

Jennifer Rumbel & Todd Heard

Wiyiliin Ta CAMHS, Hunter New England Local Health District, NSW Health, Newcastle, 2300, Australia

Orange Aboriginal Medical Service, Orange, NSW, 2800, Australia

Jamie Newman

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All authors contributed to the study conception and methodology. Paper coding was performed by Breanne Hobden, Jennifer Rumbel, and Jia Ying Ooi. Data extraction was performed by Breanne Hobden, Megan Freund, Jia Ying Ooi, and Jamie Bryant. Data analysis and synthesis was conducted by Breanne Hobden. The first draft of the manuscript was written by Breanne Hobden. All authors reviewed and commented on iterative versions of the manuscript. All authors read and approved the final manuscript.

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Supplementary file1 (XLSX 51 KB)

Appendix 1 search strategy.

Database: Ovid MEDLINE(R) and Epub Ahead of Print, In-Process, In-Data-Review & Other Non-Indexed Citations and Daily <1946 to October 11, 2022>

Search Strategy:

--------------------------------------------------------------------------------

1 exp Mental Disorders/ (1275030)

2 ((mental or psychologic* or emotional) adj (illness* or condition* or disorder* or health)).ti,ab,kw,kf. (241020)

3 (eating disorder* or anorexi* or bulimi*).ti,ab,kw,kf. (51634)

4 (disorder* adj1 mood).ti,ab,kw,kf. (19263)

5 (depression or depressive or dysthymi*).ti,ab,kw,kf. (404197)

6 (neurotic or neuros?s or psychoneuros?s or psycho-neuros?s).ti,ab,kw,kf. (17018)

7 (bipolar or bi-polar).ti,ab,kw,kf. (65793)

8 affective disorder*.ti,ab,kw,kf. (17230)

9 anxiety.ti,ab,kw,kf. (207161)

10 (panic adj (disorder* or attack*)).ti,ab,kw,kf. (11506)

11 (phobia* or phobic disorder* or arachnophobia* or acrophobi* or claustrophobi*).ti,ab,kw,kf. (10310)

12 (stress adj1 (disorder* or acute)).ti,ab,kw,kf. (40074)

13 (post traumatic stress or posttraumatic stress or PTSD or psycho?trauma* or psychological trauma*).ti,ab,kw,kf. (41549)

14 (obsessive compulsive disorder or obsessive behavio?r* or compulsive behavio?r* or OCD).ti,ab,kw,kf. (16735)

15 (stress adj1 (disorder* or psychological or condition*)).ti,ab,kw,kf. (63542)

16 schizo*.ti,ab,kw,kf. (148918)

17 (paranoid or paranoia).ti,ab,kw,kf. (8448)

18 (psychotic or psychos?s).ti,ab,kw,kf. (73522)

19 (adjustment adj1 (emotional or disorder*)).ti,ab,kw,kf. (2782)

20 (personality adj1 disorder*).ti,ab,kw,kf. (20994)

21 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 (1820924)

22 exp Substance-related disorders/ (284659)

23 ((aerosol* or alcohol* or amphetamin* or barbituat* or benzodiazepin* or buprenorphin* or cannabi* or cocaine* or codeine or crack or crystal or depressant* or ecstasy or fentanyl or GHB or hallucinogen* or heroin* or hydromorphone or hypnotic* or inhalant* or ketamin* or LSD or marihuana* or marijuana* or MDMA or methadone or methamphetamin* or morphine* or narcotic* or nitrous oxide or opiate* or opioid* or opium or oxycodone or painkiller* or pain killer* or PCP or pethidin* or psychedelic* or psychoactive* or psychostimulant* or ritalin or sedative* or solvent* or steroid* or stimulant*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder* or condition* or illness*)).ti,ab,kw,kf. (279135)

24 ((drug* or chemical* or substance*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder*)).ti,ab,kw,kf. (367349)

25 ((prescription* or prescribed) adj3 (abus* or misus* or mis-us* or depend* or addict*)).ti,ab,kw,kf. (3507)

26 22 or 23 or 24 or 25 (717202)

27 exp Comorbidity/ (114881)

28 (comorbid* or co-morbid* or cooccurr* or co-occurr*).ti,ab,kw,kf. (221037)

29 (multimorbid* or multi-morbid*).ti,ab,kw,kf. (6638)

30 (coexist* or co-exist*).ti,ab,kw,kf. (98036)

31 "Diagnosis, Dual (Psychiatry)"/ (3622)

32 (dual adj2 diagnos*).ti,ab,kw,kf. (2331)

33 27 or 28 or 29 or 30 or 31 or 32 (386202)

34 exp Indians, North American/ or exp Indigenous Canadians/ or American Natives/ or Oceanic Ancestry Group/ (27937)

35 indigenous.ti,ab,kw,kf. (34356)

36 aborigin*.ti,ab,kw,kf. (10310)

37 (first nation or first nations or first people* or native population* or native people*).ti,ab,kw,kf. (4714)

38 torres strait islander*.ti,ab,kw,kf. (1793)

39 australoid race*.ti,ab,kw,kf. (3)

40 maori*.ti,ab,kw,kf. (3622)

41 (pacific islander* or south sea islander* or pacific island american*).ti,ab,kw,kf. (3882)

42 (native* adj1 (hawaiian* or polynesian*)).ti,ab,kw,kf. (1259)

43 ((north america* or american or alaska*) adj2 (native* or indian*)).ti,ab,kw,kf. (13195)

44 (amerind* or american indian*).ti,ab,kw,kf. (9120)

45 eskimo*.ti,ab,kw,kf. (1558)

46 (inuit* or meti or inupiat* or aleut* or yupik or athabaska*).ti,ab,kw,kf. (3200)

47 34 or 35 or 36 or 37 or 38 or 39 or 40 or 41 or 42 or 43 or 44 or 45 or 46 (77476)

48 21 or 26 (2221807)

49 33 and 47 and 48 (555)

50 limit 49 to english language (547)

51 limit 50 to (comment or editorial or letter or news) (4)

52 50 not 51 (543)

Database: Embase <1947 to present>

1 exp mental disease/ (2441346)

2 ((mental or psychologic* or emotional) adj (illness* or condition* or disorder* or health)).ti,ab,kw. (302885)

3 (eating disorder* or anorexi* or bulimi*).ti,ab,kw. (75151)

4 (disorder* adj1 mood).ti,ab,kw. (30170)

5 (depression or depressive or dysthymi*).ti,ab,kw. (582832)

6 (neurotic or neuros?s or psychoneuros?s or psycho-neuros?s).ti,ab,kw. (24209)

7 (bipolar or bi-polar).ti,ab,kw. (99252)

8 affective disorder*.ti,ab,kw. (24768)

9 anxiety.ti,ab,kw. (307605)

10 (panic adj (disorder* or attack*)).ti,ab,kw. (15489)

11 (phobia* or phobic disorder* or arachnophobia* or acrophobi* or claustrophobi*).ti,ab,kw. (15304)

12 (stress adj1 (disorder* or acute)).ti,ab,kw. (50900)

13 (post traumatic stress or posttraumatic stress or PTSD or psycho?trauma* or psychological trauma*).ti,ab,kw. (54307)

14 (obsessive compulsive disorder or obsessive behavio?r* or compulsive behavio?r* or OCD).ti,ab,kw. (24522)

15 (stress adj1 (disorder* or psychological or condition*)).ti,ab,kw. (80289)

16 schizo*.ti,ab,kw. (207220)

17 (paranoid or paranoia).ti,ab,kw. (13769)

18 (psychotic or psychos?s).ti,ab,kw. (112382)

19 (adjustment adj1 (emotional or disorder*)).ti,ab,kw. (4166)

20 (personality adj1 disorder*).ti,ab,kw. (29138)

21 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 (2943948)

22 exp drug dependence/ or substance abuse/ (302956)

23 ((aerosol* or alcohol* or amphetamin* or barbituat* or benzodiazepin* or buprenorphin* or cannabi* or cocaine* or codeine or crack or crystal or depressant* or ecstasy or fentanyl or GHB or hallucinogen* or heroin* or hydromorphone or hypnotic* or inhalant* or ketamin* or LSD or marihuana* or marijuana* or MDMA or methadone or methamphetamin* or morphine* or narcotic* or nitrous oxide or opiate* or opioid* or opium or oxycodone or painkiller* or pain killer* or PCP or pethidin* or psychedelic* or psychoactive* or psychostimulant* or ritalin or sedative* or solvent* or steroid* or stimulant*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder* or condition* or illness*)).ti,ab,kw. (396550)

24 ((drug* or chemical* or substance*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder*)).ti,ab,kw. (517532)

25 ((prescription* or prescribed) adj3 (abus* or misus* or mis-us* or depend* or addict*)).ti,ab,kw. (5107)

26 22 or 23 or 24 or 25 (949786)

27 comorbidity/ (294387)

28 (comorbid* or co-morbid* or cooccurr* or co-occurr*).ti,ab,kw. (386102)

29 (multimorbid* or multi-morbid*).ti,ab,kw. (8998)

30 (coexist* or co-exist*).ti,ab,kw. (127917)

31 (dual adj2 diagnos*).ti,ab,kw. (3878)

32 27 or 28 or 29 or 30 or 31 (612625)

33 indigenous people/ or alaska native/ or american indian/ or canadian aboriginal/ or first nation/ or indigenous australian/ (29671)

34 indigenous.ti,ab,kw. (42404)

35 aborigin*.ti,ab,kw. (13451)

36 (first nation or first nations or first people* or native population* or native people*).ti,ab,kw. (6139)

37 torres strait islander*.ti,ab,kw. (2352)

38 australoid race*.ti,ab,kw. (9)

39 maori*.ti,ab,kw. (4686)

40 (pacific islander* or south sea islander* or pacific island american*).ti,ab,kw. (5565)

41 (native* adj1 (hawaiian* or polynesian*)).ti,ab,kw. (1569)

42 ((north america* or american or alaska*) adj2 (native* or indian*)).ti,ab,kw. (16645)

43 (amerind* or american indian*).ti,ab,kw. (11735)

44 eskimo*.ti,ab,kw. (1999)

45 (inuit* or meti or inupiat* or aleut* or yupik or athabaska*).ti,ab,kw. (3770)

46 33 or 34 or 35 or 36 or 37 or 38 or 39 or 40 or 41 or 42 or 43 or 44 or 45 (95627)

47 21 or 26 (3490245)

48 32 and 46 and 47 (858)

49 limit 48 to english language (849)

50 limit 49 to (books or chapter or conference abstract or conference paper or "conference review" or editorial or letter or note) (243)

51 49 not 50 (606)

Database: APA PsycInfo <1806 to October 11, 2022>

1 exp mental disorders/ (883496)

2 ((mental or psychologic* or emotional) adj (illness* or condition* or disorder* or health)).ti,ab,id. (296538)

3 (eating disorder* or anorexi* or bulimi*).ti,ab,id. (38535)

4 (disorder* adj1 mood).ti,ab,id. (17434)

5 (depression or depressive or dysthymi*).ti,ab,id. (301849)

6 (neurotic or neuros?s or psychoneuros?s or psycho-neuros?s).ti,ab,id. (27989)

7 (bipolar or bi-polar).ti,ab,id. (41378)

8 affective disorder*.ti,ab,id. (17980)

9 anxiety.ti,ab,id. (204692)

10 (panic adj (disorder* or attack*)).ti,ab,id. (12988)

11 (phobia* or phobic disorder* or arachnophobia* or acrophobi* or claustrophobi*).ti,ab,id. (13848)

12 (stress adj1 (disorder* or acute)).ti,ab,id. (42787)

13 (post traumatic stress or posttraumatic stress or PTSD or psycho?trauma* or psychological trauma*).ti,ab,id. (49364)

14 (obsessive compulsive disorder or obsessive behavio?r* or compulsive behavio?r* or OCD).ti,ab,id. (18248)

15 (stress adj1 (disorder* or psychological or condition*)).ti,ab,id. (46731)

16 schizo*.ti,ab,id. (131738)

17 (paranoid or paranoia).ti,ab,id. (13774)

18 (psychotic or psychos?s).ti,ab,id. (80976)

19 (adjustment adj1 (emotional or disorder*)).ti,ab,id. (4845)

20 (personality adj1 disorder*).ti,ab,id. (33681)

21 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 (1282281)

22 exp "substance use disorder"/ (133011)

23 ((aerosol* or alcohol* or amphetamin* or barbituat* or benzodiazepin* or buprenorphin* or cannabi* or cocaine* or codeine or crack or crystal or depressant* or ecstasy or fentanyl or GHB or hallucinogen* or heroin* or hydromorphone or hypnotic* or inhalant* or ketamin* or LSD or marihuana* or marijuana* or MDMA or methadone or methamphetamin* or morphine* or narcotic* or nitrous oxide or opiate* or opioid* or opium or oxycodone or painkiller* or pain killer* or PCP or pethidin* or psychedelic* or psychoactive* or psychostimulant* or ritalin or sedative* or solvent* or steroid* or stimulant*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder* or condition* or illness*)).ti,ab,id. (132642)

24 ((drug* or chemical* or substance*) adj3 (abus* or use* or using* or misus* or mis-us* or depend* or addict* or illegal* or illicit* or habit* or intoxica* or in-toxica* or disorder*)).ti,ab,id. (152314)

25 ((prescription* or prescribed) adj3 (abus* or misus* or mis-us* or depend* or addict*)).ti,ab,id. (2186)

26 22 or 23 or 24 or 25 (258622)

27 comorbidity/ or dual diagnosis/ (35623)

28 (comorbid* or co-morbid* or cooccurr* or co-occurr*).ti,ab,id. (73389)

29 (multimorbid* or multi-morbid*).ti,ab,id. (1223)

30 (coexist* or co-exist*).ti,ab,id. (11539)

31 (dual adj2 diagnos*).ti,ab,id. (3045)

32 27 or 28 or 29 or 30 or 31 (91931)

33 indigenous populations/ or alaska natives/ or american indians/ or inuit/ or exp pacific islanders/ (14098)

34 indigenous.ti,ab,id. (12358)

35 aborigin*.ti,ab,id. (4055)

36 (first nation or first nations or first people* or native population* or native people*).ti,ab,id. (1770)

37 torres strait islander*.ti,ab,id. (512)

38 australoid race*.ti,ab,id. (0)

39 maori*.ti,ab,id. (1427)

40 (pacific islander* or south sea islander* or pacific island american*).ti,ab,id. (1862)

41 (native* adj1 (hawaiian* or polynesian*)).ti,ab,id. (722)

42 ((north america* or american or alaska*) adj2 (native* or indian*)).ti,ab,id. (9578)

43 (amerind* or american indian*).ti,ab,id. (5416)

44 eskimo*.ti,ab,id. (364)

45 (inuit* or meti or inupiat* or aleut* or yupik or athabaska*).ti,ab,id. (633)

46 33 or 34 or 35 or 36 or 37 or 38 or 39 or 40 or 41 or 42 or 43 or 44 or 45 (30108)

47 21 or 26 (1356306)

48 32 and 46 and 47 (343)

49 limit 48 to english language (328)

50 limit 49 to (chapter or "column/opinion" or "comment/reply" or dissertation or editorial or letter) (50)

51 49 not 50 (278)

Web of Science

Indexes=SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, ESCI, CCR-EXPANDED, IC Timespan=All years

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Hobden, B., Freund, M., Rumbel, J. et al. Mental Health and Substance Use Co-Occurrence Among Indigenous Peoples: a Scoping Review. Int J Ment Health Addiction (2023). https://doi.org/10.1007/s11469-023-01114-x

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Indigenous People and Qualitative Research - Making It Work

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• Procedures Nursing and Health Professions 100%
• Researcher Nursing and Health Professions 100%
• Research Experience Nursing and Health Professions 100%
• Qualitative Research Psychology 100%
• Methodology Psychology 14%
• Qualitative Research Method Psychology 14%

T1 - Indigenous People and Qualitative Research - Making It Work

AU - Roman, Curtis

N2 - Indigenous people currently comprise 26.8 % of the Northern Territory population. The Federal Government has recently embarked on a closing the gap campaign to improve the lives of Indigenous people and to address the disadvantage that exits in the lives of Indigenous people. This paper is designed to provide Indigenous and nonindigenous people working in research with some practical advice on how to improve the research experience for Indigenous people and how to develop culturally appropriate research methodologies. The paper proposes that qualitative research methods are practical, useful, beneficial and culturally appropriate for research on and with Indigenous people. The paper also provides practical advice on how to ensure that Indigenous people are represented in research to ensure that their voices are clearly heard. It is hoped that this paper creates awareness among researchers so that they can use this awareness in their research on Indigenous people. The methodology used to write the paper is based on the author's own research experiences as an Indigenous researcher. In the main, the data used in this paper has been gathered from qualitative research textbooks and from personal experiences in research and based on the author's personal experiences of delivering post graduate research courses on Indigenous research issues. The paper shows that qualitative research methods can be useful, productive and culturally appropriate for Indigenous people and can be used to enrich data and to encourage Indigenous people to participate in research. The paper shows that through qualitative research techniques, Indigenous people are able to express themselves and identify issues themselves, which means that researchers are able to gather more data while at the same time, providing Indigenous research participants with a feeling of cultural safety. This is important for those in the area of Indigenous research as Indigenous people have had a long history of negative research experiences.

AB - Indigenous people currently comprise 26.8 % of the Northern Territory population. The Federal Government has recently embarked on a closing the gap campaign to improve the lives of Indigenous people and to address the disadvantage that exits in the lives of Indigenous people. This paper is designed to provide Indigenous and nonindigenous people working in research with some practical advice on how to improve the research experience for Indigenous people and how to develop culturally appropriate research methodologies. The paper proposes that qualitative research methods are practical, useful, beneficial and culturally appropriate for research on and with Indigenous people. The paper also provides practical advice on how to ensure that Indigenous people are represented in research to ensure that their voices are clearly heard. It is hoped that this paper creates awareness among researchers so that they can use this awareness in their research on Indigenous people. The methodology used to write the paper is based on the author's own research experiences as an Indigenous researcher. In the main, the data used in this paper has been gathered from qualitative research textbooks and from personal experiences in research and based on the author's personal experiences of delivering post graduate research courses on Indigenous research issues. The paper shows that qualitative research methods can be useful, productive and culturally appropriate for Indigenous people and can be used to enrich data and to encourage Indigenous people to participate in research. The paper shows that through qualitative research techniques, Indigenous people are able to express themselves and identify issues themselves, which means that researchers are able to gather more data while at the same time, providing Indigenous research participants with a feeling of cultural safety. This is important for those in the area of Indigenous research as Indigenous people have had a long history of negative research experiences.

UR - http://search.informit.com.au/documentSummary;dn=787614138844049;res=IELAPA

M3 - Article

SN - 1037-3403

JO - Aboriginal and Torres Strait Islander Health Worker Journal

JF - Aboriginal and Torres Strait Islander Health Worker Journal

• Open access
• Published: 13 September 2022

Decolonising qualitative research with respectful, reciprocal, and responsible research practice: a narrative review of the application of Yarning method in qualitative Aboriginal and Torres Strait Islander health research

• Michelle Kennedy 1 , 2 ,
• Raglan Maddox 3 ,
• Kade Booth 1 , 2 ,
• Sian Maidment 1 ,
• Catherine Chamberlain 4 , 5 , 6 &
• Dawn Bessarab 7  

International Journal for Equity in Health volume  21 , Article number:  134 ( 2022 ) Cite this article

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Indigenous academics have advocated for the use and validity of Indigenous methodologies and methods to centre Indigenous ways of knowing, being and doing in research. Yarning is the most reported Indigenous method used in Aboriginal and Torres Strait Islander qualitative health research. Despite this, there has been no critical analysis of how Yarning methods are applied to research conduct and particularly how they privilege Indigenous peoples.

To investigate how researchers are applying Yarning method to health research and examine the role of Aboriginal and Torres Strait Islander researchers in the Yarning process as reported in health publications.

Narrative review of qualitative studies.

Data sources

Lowitja Institute LitSearch January 2008 to December 2021 to access all literature reporting on Aboriginal and Torres Strait Islander health research in the PubMed database. A subset of extracted data was used for this review to focus on qualitative publications that reported using Yarning methods.

Thematic analysis was conducted using hybrid of inductive and deductive coding. Initial analysis involved independent coding by two authors, with checking by a third member. Once codes were developed and agreed, the remaining publications were coded and checked by a third team member.

Forty-six publications were included for review. Yarning was considered a culturally safe data collection process that privileges Indigenous knowledge systems. Details of the Yarning processes and team positioning were vague. Some publications offered a more comprehensive description of the research team, positioning and demonstrated reflexive practice. Training and experience in both qualitative and Indigenous methods were often not reported. Only 11 publications reported being Aboriginal and/or Torres Strait Islander led. Half the publications reported Aboriginal and Torres Strait Islander involvement in data collection, and 24 reported involvement in analysis. Details regarding the role and involvement of study reference or advisory groups were limited.

Aboriginal and Torres Strait Islander people should be at the forefront of Indigenous research. While Yarning method has been identified as a legitimate research method to decolonising research practice, it must be followed and reported accurately. Researcher reflexivity and positioning, and Aboriginal and Torres Strait Islander ownership, stewardship and custodianship of data collected were significantly under detailed in the publications included in our review. Journals and other establishments should review their processes to ensure necessary details are reported in publications and engage Indigenous Editors and peer reviewers to uphold respectful, reciprocal, responsible and ethical research practice.

Introduction

Indigenous peoples have undertaken research since time immemorial, as evidenced in our continued survival prior to, and post colonisation and contemporary coloniality [ 1 ]. However, Indigenous peoples have long been researched by non-Indigenous peoples as mere objects, without prior consent to the research and commonly without meaningful engagement, or access to the results. In colonised countries, research has been utilised as a tool to dehumanise Indigenous peoples [ 1 ]. In Australia, research was used as a tool to justify Terra Nullius, “no man’s land”, the grounds on which the continent was taken by the crown with no negotiation or treaty offered [ 2 ] to the 500 Aboriginal and Torres Strait Islander nations [ 2 , 3 ] that have lived on this land, now called Australia, for over 60,000 years [ 4 ]. Research such as that conducted by D. J Cunningham (1889) “The Spinal Curvature in an Aboriginal Australia” which reported “…In these particulars the Australian spine resembles somewhat the spine of a Chimpanzee” [ 5 ] was used to de-humanise Aboriginal people, disrupting culture and cultural practice [ 6 ]. Findings were applied to understand the antithetical other and to justify the claim of Australia as uninhabited lands. Further, Darwin used such data to support his theory of evolution, arguing that the “natives” (sic) were the living example of the difference in degree between humans and apes [ 7 ]. Australia was colonised on a racially imperialistic basis which has been embedded through coloniality [ 8 ]. In the words of Linda Tuhiwai Smith:

“This collective memory of imperialism has been perpetuated through the ways in which knowledge about indigenous peoples was collected, classified and then represented in various ways back to the West, and then through the eyes of the West, back to those who have been colonized”. [ 1 ] (p. 30)

In response to the colonial legacy of research and its dirty [ 1 ] reputation among Indigenous people, the use of Indigenous research methodologies and methods to aid in decolonising the research process have been advocated for, and by Indigenous academics domestically and internationally [ 1 , 9 ]. Decolonising approaches recognise that the way of knowing has been historically and institutionally contrived in a Western construct, [ 10 ] and that Indigenous methodologies and methods can be used to shift the research paradigm and privilege Indigenous ways of knowing, being and doing. Indigenous ways of knowing, being and doing are shaped by our relationality. Relationality to each other, our lands, our knowledge systems and our storylines [ 11 ].

Morton Robinson describes;

“Relationality is an inextricable part of our sovereign knowledges, informing our scholarship to produce innovative social research. As a presupposition it shapes ways of knowing, being and doing to be connected is to know, and knowing is embodied in social relations and bloodline to country, determined by ancestors and creator beings that guide who can be a knower and of what knowledges” . [ 11 ]

Relationality shapes Indigenous methodologies, informing the ways in which research is conceptualised, designed, conducted, analysed and disseminated. As such the ways in which Indigenous methodologies are applied will vary depending on the relationality, social and cultural positioning of the researcher and peoples involved. In an example outlining Indigenist Research Methodology, Aboriginal scholar Rigney states:

“Indigenist research is research by Indigenous Australians whose primary informants are Indigenous Australians and whose goals are to serve and inform the Indigenous struggle for self-determination”. [ 12 ] (p. 118)

Research methods are then applied by the researcher to undertake the research, the ‘doing’. An international systematic review by Drawson et al. reported three key components to Indigenous Research Methods:

Researchers must situate themselves and the Indigenous Peoples with whom they are collaborating in the research process

The inclusion of Indigenous Peoples in the research process in a way that is respectful, reciprocal, and decolonizing and preserving of self-determinism, and

Prioritization of Indigenous ways of knowing [ 13 ]

These key components of Indigenous research methods coincide with the established standards for conducting ethical research with Aboriginal and Torres Strait Islander people, such as the National Health and Medical Research Council (NHMRC) Values and Ethics Guideline, [ 14 ] the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) Code of Ethics [ 15 ] and the Aboriginal Health and Medical Research Council (AHMRC) Key Principles [ 16 ].

Yarning in Indigenous qualitative research is one method being used in Australia and internationally, [ 17 ] and has been recommended for use in Aboriginal and Torres Strait Islander health research [ 9 ] to privilege Indigenous ontologies [ 18 ]. Yarning has been used in recent research as a way to safely engage with participants to explore research questions relating to the topic of the study. The cultural safety of yarning enables sensitive issues to emerge as it fosters agency among participant(s) including the ability to disclose information at their own discretion [ 14 ]. Yarning is led by the researcher where the participant is encouraged to tell their story from the position of their lived experience. Whilst the research topic yarn does not follow a pre-determined set of questions, it does include a yarning topic guide relating to the research that the researcher is listening for in the story. Yarning does not follow the formal conventions of research interviewing and can weave in and out of the yarning story where the role of the researcher is to listen for cues related to the research topic. Yarning as a research method must also draw on cultural protocols and practices that are relevant to the people’s involved. Yarning draws on relationality through processes of the Social, Work and Research Topic Yarn which can inform either Collaborative Yarning or Therapeutic Yarning as presented in Fig.  1  [ 17 ]. Relationality of the Yarn is paramount to producing rich data [ 19 ]. It is reasonable to expect that Indigenous Standpoint generates deeper relationality, through shared experience and understandings of the Yarn [ 19 ].

A working depiction of the Yarning Process as developed by Dawn Bessarab

Whilst there appears to be consensus among Indigenous and non-Indigenous scholars on the need for decolonising research approaches and the importance of utilising Indigenous research methodologies and methods, we could not find literature specifically relating to how these are pragmatically applied to the conduct of research. The NHMRC directs researchers to conduct ethical research in line with six core values: Spirit and integrity, Cultural continuity, Equity, Respect, Reciprocity, and Responsibility [ 14 ]. Our Indigenous-led team sought to investigate how researchers are applying Yarning method to ethical health research. We then examined and analysed the Yarning process, including the role of Aboriginal and Torres Strait Islander people as reported in health publications.

Research team

Our lived experiences and coming to understand our relation to the world is complex, dynamic, but fundamentally important, as we recognise that Indigenous peoples ways of knowing, being and doing are relational [ 11 ]. This includes, but is limited to what is known, how it is known; the nature and embodiment of our realities, encapsulating what exists, what is possible, [ 20 ] and how we relate to our respective programs of research.

The majority Indigenous research team is led by a Wiradjuri woman MK with disciplinary training in social science/social work and Indigenous knowledges connected to Wiradjuri, Worimi and Awabakal country. KB is a non-Indigenous researcher, experienced in qualitative health research with a social science background. SM is a Noongar woman with disciplinary training in exercise and sport science and a current medical student. CC is a Palawa woman of the Trawlwoolway clan with training in midwifery, nursing and public health, and experienced in mixed methods research. DB is an Indigenous researcher from the Bard and Yjindabandi nations in Western Australia and is a senior social worker with extensive background and expertise in Aboriginal health research and methodologies specifically yarning. RM is from the Bagumani (Modewa) Clan in Papua New Guinea, with training and experience in public health and epidemiology.

Our research team embodies over 200 years of lived Indigenous experience and over 60 years’ experience conducting qualitative research in Aboriginal and Torres Strait Islander health.

Methodology

This review forms part of a larger project exploring the conduct of Aboriginal and Torres Strait Islander health research, led by an Aboriginal and Torres Strait Islander research team. A primary scoping review was conducted of all Aboriginal and Torres Strait Islander health research published since the establishment of the Closing the Gap campaign [ 21 ]. This parent review included 2,150 articles and is published elsewhere [ 22 ]. When conducting this review, the authors sought to extract information on the reported use of Indigenous research methodologies and found 5% of articles reported using Indigenous methodologies and/or methods. Indigenous methodologies/methods were predominately reported in qualitative papers. This was not published in the parent review.

This review of Yarning aims to answer two research questions:

How are researchers applying the Yarning method in qualitative health research?

What is the role of Aboriginal and Torres Strait Islander researchers in the Yarning process, as reported in health publications?

Design and inclusion criteria

The parent review applied a systematic literature search via the Lowitja Institute website using the search tool Lowitja.search to access all Aboriginal and Torres Strait Islander health literature in the PubMed database. The selected topics in the database were “all” and “Aboriginal and Torres Strait Islander”. Publications were included if they presented original data on Aboriginal and Torres Strait Islander health in Australia and were published between January 2008 and December 2020. The search was updated to include publications until December 2021. Publications that were identified as using qualitative methods for data collection and analysis were assessed. From this, those that reported using Yarning method were included for analysis in this review.

Level of reporting assessment

We assessed the level of reporting in the selected publications using a purpose-built tool to examine Aboriginal and Torres Strait Islander engagement and oversight of the research. The tool was developed as informed by our research questions, ethical research guidelines and an established Aboriginal and Torres Strait Islander quality appraisal tool [ 23 ]. The tool was developed due to the timeframe of included publications, and an acknowledgment of the lack of reporting guidelines for ethical research practice with Indigenous peoples prior to 2019 [ 24 ]. The tool has six categories; (1) Aboriginal and Torres Strait Islander engagement in development of the research, (2) Aboriginal and Torres Strait Islander engagement in data collection, (3) experience of researchers reported, (4) Aboriginal and Torres Strait Islander engagement in the analysis, (5) Aboriginal and Torres Strait Islander specific ethics approval granted, and (6) whether the original method publication was cited. Two authors (MK, KB) independently reviewed each document and ranked each publications level of reporting high (5–6), medium (3–4) or low (0–2). This assessment was not used to exclude studies or inform analysis, but rather it was used for Collaborative Yarning among the authorship team which is reflected in the discussion.

Data analysis

Full text publications were imported into NVivo software for analysis. Three members of the research team who conducted the quality appraisal (KB, MK & SM) engaged in Collaborative Yarning with all authors (MK, RM, KB, SM, CC & DB) to inform the analysis.

Thematic analysis, as outlined by Braun & Clarke, [ 25 ] was used to examine how researchers apply Yarning method in qualitative health research (MK & KB). The initial phase included familiarisation with the data. The team members involved in data coding (KB, SM & MK) have been immersed in the data throughout the primary review, and by reading and sorting each qualitative publication that reported using Yarning methods during the inclusion phase. The senior author DB familiarised the data by reading a sample of publications identified by MK. The sample of papers were selected, including a variety of reporting levels, to inform Collaborative Yarning practice to unpack the different perceptions in reporting of Yarning methods. Further, this approach assisted to ensure consistency between the authorship team, actively facilitating discussion on different points of view. The team members met and engaged in Collaborative Yarning to discuss the data after reading the selected publications on how Yarning was reported, and how it was being analysed according to the research questions.

Similar to Fereday, [ 26 ] thematic analysis was approached through a hybrid of inductive and deductive coding. As noted in our first research question, the role of Aboriginal and Torres Strait Islander people was a key component to our analysis. Codes were developed deductively from our research questions as we sought to draw out the role of Aboriginal and Torres Strait Islander people in the Yarning process. These codes included: “Aboriginal Involvement”, “Analysis approach”, “Framework Methodology”, and “Yarning Processes”. While these were not necessarily “pre-conceived” by the coders (MK & KB), they were broadly discussed prior to coding in relation to the research questions and were then sought out by the researchers. In conjunction with the initial deductive codes that were drawn out to address parts of the research aims, the coding process was predominantly inductive. Inductive coding was used to examine the integral components of Yarning processes, justification of method and the way that these methods, processes and involvement were being reported. MK & KB independently coded the same three publications before meeting to discuss initial themes. The authors found that overall, coding was similar, with some variations on wording to describe themes. After agreement, MK & KB continued to code a further five of the same publications before meeting again to compare. Any conflicts were discussed until agreement was reached, although disagreements were limited. SM cross checked codes and contributed to discussions of clarity of definitions. MK & KB coded an additional seven publications for comparison, before KB went on to singularly code the remaining publications. SM then reviewed all publications and codes for consistency and agreement to ensure all paper were coded independently and in duplicate.

Search results are outlined in Fig.  2 using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) four-phase flow diagram. The total 2,150 papers in the parent reviewed were screened, an updated search was conducted and found 8 new qualitative research papers. N  = 354 papers reported use of qualitative methods, Yarning method was reported in n  = 46 papers and were included in analysis.

PRISMA Flow diagram of study selection process

Of the 46 included publications, 15 were considered high level reporting across focus area, 19 medium level reporting, and 12 low level reporting. We elaborate on the intricacies of this throughout the result section.

We found that researchers are reporting the application of the Yarning method to qualitative research methodology in a wide variety of ways. Both Aboriginal and non-Aboriginal researchers and research teams are using the method, collecting data and involved in analysis.

The following sections will be presented in a manner that addresses the research questions, by detailing how Yarning is being applied to qualitative health research as reported by the included publications, and what role Aboriginal and Torres Strait Islander play in the research process.

How Yarning is being applied to qualitative health research

Our analysis of the 46 publications showed a variety of reporting on the way that Yarning is applied to Aboriginal and Torres Strait Islander qualitative health research. We begin our critical analysis into this, by first looking at why researchers report using Yarning, followed by how they report using Yarning and how they situate themselves as qualitative researchers and their team in the research process.

Why Yarning?

Reasoning for using Yarning method varied across publications. It was predominantly considered to provide a culturally safe and sensitive data collection process [ 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 ] that privileged Indigenous knowledge systems through connection and relationships [ 27 , 31 ]. Enabling two-way knowledge sharing; [ 27 , 37 , 39 ] using narratives; [ 40 , 41 ] storytelling [ 27 , 28 , 31 , 34 , 37 , 41 , 42 , 43 , 44 , 45 ] and addressing unequal power relationships were most commonly used to justify why Yarning was used, as it is a research process that acknowledges and builds on cultural protocols. One publication stated Yarning was the preferred research method for the older Aboriginal community (see Table 2 , 1.3) [ 46 ].

Yarning was reported to be an Indigenist research practice [ 28 ] that allows for more flexibility than other interviewing approaches [ 27 ]. Yarning method was considered to provide an environment that fosters rapport with participants, open discussion, and allow for participant-led research to co-create knowledge and privilege Indigenous voices.

How Yarning processes are being reported

Details regarding the specifics of the way that Yarning was conducted were often vague. For example, many publications simply stated that Yarning took place, without detail on the settings or the conversations that took place. However, some publications described various components of yarning, such as Therapeutic or Social yarning. For example, “ In this study, social yarning was used at the beginning of conversations with young people to establish a connection not strongly associated with the actual purpose of the yarn.” [ 27 ] (see Table 2 , 2.1).

Most publications reported using audio recording and transcribing to collect data, however, note taking was also reported as a form of data collection [ 27 , 47 ]. Note taking replaced audio recording to reduce potential harm and was deemed culturally safe in some instances. Mostly, it was due to consent not being obtained by participants who preferred note taking. One publication recognised that starting the recorder had the potential to break the flow of the yarn, so continued taking notes instead.

Eleven publications provided their entire interview guide [ 31 , 34 , 39 , 45 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ]. Others provided a sample of example questions, [ 40 , 44 , 55 , 56 , 57 ] while others briefly described areas explored during Yarning [ 27 , 28 , 39 , 43 , 47 , 54 , 58 , 59 , 60 , 61 ]. One publication noted that there was “no set interview guide and that participants were encouraged, with consistent prompts to ‘yarn’ about their experiences with renal service providers”  [ 62 ]. Some descriptions were minimal stating guides either had minimal questioning or use of probes [ 42 ] or simply stated that they were semi structured.

Some of the more comprehensive papers provided insight into seating arrangement, reimbursement to participants, and provision of meals. One publication described the seating arrangement as a component to providing a safe environment that allowed the researcher to observe body language and non-verbal cues (see Table 2 , 2.4) [ 27 ]. Eight publications reported reimbursement to participants, which were usually vouchers of between $20 and $50 for their time in participating in the study [ 40 , 49 , 50 , 51 , 52 , 63 , 64 , 65 ]. Five publications reported incorporating a meal within the data collection. [ 32 , 38 , 45 , 63 , 65 ] Study sizes for individual Yarning was reported to include between 4 [ 49 ] and 74 participants [ 28 ] with minimal justification for the choice of numbers. Yarning circles were often applied across community settings with each Yarning circle including between 5–17 participants at each individual circle. All but one [ 66 ] of the publications ( n  = 45) reported the sample size.

Publications reported using varied sampling approaches including convenient sampling, [ 41 ] and opportunistic sampling [ 42 ], usually through routine health care [ 27 , 41 , 51 , 58 , 67 ]. However most papers reported purposeful sampling , [ 27 , 28 , 29 , 34 , 39 , 47 , 48 , 55 , 56 , 59 , 60 , 61 , 68 ] including through key community Elders and representatives [ 33 , 50 , 69 ].

Timeframes when conducting Yarning varied significantly from 10-30 min [ 27 ] up to 2.5 h, [ 44 , 55 , 56 ] more generally publications reported 40-60 min. Yarning circles were often reported as generally held at a time and place suitable to the participant [ 58 ] with use of community outdoor settings or participants houses. While Yarning was predominantly used to engage with Aboriginal and Torres Strait Islander people, some Yarning circles included non-Aboriginal participants such as health providers.

Research team positioning

Generally, details regarding the research team positioning were not available in publications (see: Table 1 & supp. 1 ). Exemplar papers described the research team and their positioning and demonstrated reflexivity on how this influences all stages of research (see Table 2 , 3.1). In these instances, authors described their ability to have “deeper” conversations with their participants, and the importance of established relationships in Aboriginal and Torres Strait Islander research. Some publications acknowledged that this contributed to providing a safe and favourable environment for participants.

Training and experience in both qualitative and Indigenous methods were often not reported. Eleven of the publications that reported Aboriginal and/or Torres Strait Islander involvement in data collection also outlined the experience, qualifications and expertise of the interviewer/s (see Table 2 , 3.2) [ 33 , 39 , 40 , 42 , 45 , 50 , 51 , 60 , 64 , 65 , 72 ]. Six of the publications specifically stated that the interviewers had relevant training in conducting qualitative interviews [ 31 , 33 , 45 , 50 , 51 , 72 ]. One publication [ 31 ] specifically detailed that the research team had been trained in Yarning methods with Professor Dawn Bessarab, who validated the method. This was a more comprehensive example of the way training was reported compared to the way training was reported in other publications.

The role of Aboriginal and Torres Strait Islander people in the Yarning process

We sought to detail the role of Aboriginal and Torres Strait Islander people in each stage the research process in publications that use Yarning method. In particular, we examine the role of Aboriginal and Torres Strait Islander people in leading the research, collecting data, analysis, and acting as an advisory to the research.

Aboriginal & Torres Strait Islander led research

Eleven of the forty-seven publications reported Aboriginal and Torres Strait Islander people as having led the research [ 28 , 30 , 32 , 33 , 34 , 40 , 42 , 54 , 64 , 65 , 70 ]. Those that were led by Aboriginal and Torres Strait Islander academics occasionally offered details on the authors and their roles. This was detailed using the authors initials, followed by their Aboriginal status, positioning, and role in the project. However, these details were scarce and difficult to immediately identify within publications. More comprehensive papers reflected on how these factors created an approach that helped centre Aboriginal voices in the research process (see Table 3 , 1.1).

Aboriginal & Torres Strait Islander involvement in data collection

Aboriginal and Torres Strait Islander researchers were reported as responsible for data collection and interviews in only half of the publications [ 71 ]. Some publications provided less detail on data collection involvement than others, and simply noted that the researcher was Aboriginal and therefore culturally safe (see Table 3 , 3.2).

Seven publications reported that interviews were conducted by both Aboriginal and/or Torres Strait Islander and non-Aboriginal and/or Torres Strait Islander researchers, [ 28 , 31 , 39 , 56 , 57 , 59 , 63 ] often citing that one was there to assist the other. One publication identified that there was “no difference in data, in terms of collection or results, was perceived by the non-Indigenous researcher when conducting the interviews.” [ 57 ].

Six publications reported that there was no Aboriginal and/or Torres Strait Islander involvement in data collection and the conducting of Yarning circles [ 29 , 38 , 48 , 49 , 67 ]. Some publications did not expand on this, and simply stated that the data collection was conducted by a non-Aboriginal researcher without further discussion (see Table 3 , 3.3). Others were more reflexive when addressing not having had an Aboriginal and Torres Strait Islander person collect the data. One publication [ 29 ] stated that they attempted to have an Aboriginal and Torres Strait Islander researcher involved, however, due to existing responsibilities of Aboriginal people in the area, they were unsuccessful (see Table 3 , 3.4). This publication then addressed the absence of Aboriginal involvement by detailing the critical part that relationships with the staff at Aboriginal Health Services were to different stages of the project. Another paper stated that the lack of Aboriginal involvement “may have impacted on the richness of interview data”  [ 48 ].

Whilst rare, some papers suggested Yarning methods as an effective way to counter the impact of not having an Aboriginal or Torres Strait Islander person collect the data (see Table 3 , 3.5).

Others accounted for the lack of Aboriginal and/or Torres Strait Islander involvement in data collection through using Aboriginal guidance over the project, stating ongoing guidance was sought throughout various stages of the project (see Table 3 , 3.6).

Overall, the absence of Aboriginal and Torres Strait Islander involvement in the collection of data was frequently not addressed by publications. Eighteen publications did not report whether or not there were Aboriginal and/or Torres Strait Islander involvement in data collection [ 28 , 31 , 32 , 34 , 36 , 37 , 41 , 46 , 47 , 52 , 53 , 54 , 58 , 62 , 66 , 69 , 70 , 72 ]. For the most part, these publications did not identify who was responsible for conducting the Yarning circles.

Aboriginal & Torres Strait Islander involvement in analysis

Twenty-four of the 46 publications reported Aboriginal and/or Torres Strait Islander involvement in analysis [ 28 , 29 , 30 , 31 , 32 , 33 , 34 , 39 , 40 , 43 , 45 , 47 , 49 , 50 , 52 , 55 , 56 , 58 , 59 , 60 , 61 , 62 , 64 , 65 ]. Predominately it was simply stated that there were Aboriginal and/or Torres Strait Islander researchers or advisory groups involved in the process, without further elaboration of exactly what the involvement entailed. One paper suggested that Aboriginal and/or Torres Strait Islander investigators helped non-Indigenous researchers to “increase their cultural understandings and read the data differently. ” [ 28 ]. Other publications reported a collaborative analysis revision by experts and Aboriginal and/or Torres Strait Islander coinvestigators (see Table 3 , 4.1). This was deemed efficient in the inclusivity of perspectives that may have not been considered.

Many publications did not report whether or not they had Aboriginal and/or Torres Strait Islander involvement in data analysis. Some of these included publications that used the researchers initials to demonstrate involvement in analysis but did not specify whether they were Aboriginal and/or Torres Strait Islander. Not having Aboriginal and/or Torres Strait Islander involvement in data collection was typically not reflexively addressed.

One publication did report not having Aboriginal and/or Torres Strait Islander involvement in data collection and identified potential issues with this throughout their publication with reflections such as “The challenge for a non-Aboriginal researcher exploring issues within the Aboriginal community is to avoid repeating mistakes of the past.” [ 67 ] Other publications noted (by those who acknowledge it) that Aboriginal and/or Torres Strait Islander advisory, person or group was used to overlook data analysis.

A limited number of publications indicated that participants were offered the opportunity to provide feedback on the findings (see Table 3 , 4.2). It was often reported by simply stating that data was returned to participants for feedback. Some publications elaborated on this, with one suggesting that yarning with participants about the results allowed for them to review and engage with the interpretation of data. Some publications noted that transcripts were not returned to participants, nor were the data validated by participants without further comment.

The few publications that reported using an ‘Indigenous approach’ to analysis were slightly more comprehensive than those that reported grounded theory approach (see Table 3 , 4.3). Overall, details on analysis were often lacking, and were the least comprehensive component of the methodology sections.

“Aboriginal Advisory”

Only twenty-nine of the 46 included publications reported having an Aboriginal and/or Torres Strait Islander advisory, person or group throughout the course of their study [ 27 , 28 , 29 , 31 , 33 , 34 , 36 , 37 , 39 , 40 , 41 , 42 , 43 , 45 , 46 , 47 , 51 , 53 , 54 , 55 , 56 , 59 , 60 , 62 , 63 , 65 , 66 , 67 , 68 ]. Advisory groups were used to oversee the research, analyse data, develop protocols, guide research conduct, identify potential services and recruitment, and develop interview guides. Publications that offered a more comprehensive description of the role of the advisory group gave details on who was involved, such as Elders and community members, and how their guidance was utilised in each stage of the research process (see Table 3 , 5.1). Often, these publications noted that the reference groups held the study team accountable for conducting appropriate and respectful research.

Most publications reported an Aboriginal reference or guiding group, with limited details on who was involved, or what exactly their role entailed (see Table 3 , 5.2). Many of the publications did not mention Aboriginal and/or Torres Strait Islander Advisory until the acknowledgment section of the manuscript. The process of Aboriginal and/or Torres Strait Islander advisory varied across publications, with limited consistency in the level of reporting and who was involved.

This is the first review to critically analyse the use of Yarning method in Aboriginal and Torres Strait Islander health research. Through this, we make recommendations on how systems, including the Academy and other mechanisms such as journals, can better incorporate Aboriginal and Torres Strait Islander ways of knowing, being and doing into systems and processes, to ultimately uphold research integrity.

Although there is a strong and growing evidence-base for Indigenous quantitative methods that have been used by Indigenous scholars with ongoing room for improvement in everyday practice, [ 73 ] researchers using Indigenous methods in health research frequently report using qualitative methods [ 13 ]. Qualitative methods are said to privilege Indigenous voices [ 12 ] and remove power imbalances [ 13 , 18 ]. Yarning method is the most commonly reported Indigenous method applied to Aboriginal and Torres Strait Islander qualitative health research. Despite this, our analysis shows that details regarding how Yarning methods were applied, and the intricacies of Aboriginal and Torres Strait Islander involvement (such as stages, level or type of involvement), were significantly under reported. While part of this may be attributed to limitations in researcher reflexivity, the level of detail required to situate authors positionality, relationality as well as thoroughly describe research processes are not always achievable within the existing parameters of journal and reporting guidelines. We offer our recommendations and improvement opportunities for both researchers, and academic institutions to ensure reporting in publications reflects the need for ethical and reciprocal research with Aboriginal and Torres Strait Islander people, as per the NHMRC Values and Ethics Guideline, [ 14 ] the AIATSIS Code of Ethics [ 15 ] and the AHMRC Key Principles [ 16 ].

The right reasons? Why are researchers using Yarning methods?

In the reviewed publications, Yarning was frequently cited as a way of decolonising research practice. It was considered culturally safe, offer two-way knowledge sharing, built on cultural protocols, and allow participant led research while attempting to better balance and privilege Indigenous voices. Numerous research has validated Yarning as a recommended method to privilege Indigenous ontologies [ 9 , 17 , 18 ]. However, it is not simply enough to report employing an Indigenous method such as Yarning and assume that it is adequate. Yarning is grounded in cultural positioning [ 17 ] and relationality [ 11 ]. Therefore, the application of Yarning will vary based on the context and the researcher (including their social and cultural positioning, and considerations of power and control) and the Aboriginal and Torres Strait Islander community involved. Similarly, Yarning is not simply the means to collect the data. Decolonising research must address the research process as a whole and centre Indigenous worldviews, values and principles [ 1 , 74 ]. This is depicted in Fig.  3 .

Visual representation of the Yarning Process in line with decolonising research practice as depicted by Michelle Kennedy

Reporting positioning, reflexivity and relationality is essential for ethical research

Irrespective of employing a decolonising approach, researcher positioning is well understood as a necessary component to conducting reflexive, ethical and quality research in all qualitative research practice. Researchers are embedded within the research process, and are therefore required to constantly consider their worldview and positionality [ 75 ]. As Kiekelame and Swartz (2019) conclude “the importance of reflexivity and self-reflexivity as a transformative approach in a decolonising process cannot be over emphasised”  [ 76 ]. Despite researcher positioning and reflexive practices being at the core of qualitative research and the importance of Aboriginal and Torres Strait Islander led research, we found limited information reported on the research team’s context, including social and cultural positioning and relationality which is a central “presupposition of an Indigenous social research paradigm”; [ 11 ] our belonging to Mob and Country, the connection to the living earth must be recognised and strategically mobilised by Indigenous peoples in developing an Indigenous research agenda.

While some publications articulated social and cultural positioning and relationality of researchers and decolonising research practice, most were silent on these aspects. This silence and subsequent invisibility, often leads to reinscribe racial dominance in theorising, analysing and undertaking research in practice; embedded through the ongoing experience of colonisation and the ingrained nature of coloniality across Australia.

Non-Indigenous authors did not always detail reflective practice or identify their social and cultural positioning. This is in opposition to decolonising research practice which seeks to address Euro-Western dominant paradigms [ 1 , 77 ]. Describing Aboriginal and Torres Strait Islander involvement, researcher reflexivity and positionality, and relationalities are crucial in research, including both qualitative processes and decolonising approaches. This is even more critical when Indigenous methodologies and methods are reportedly being applied by non-Indigenous peoples. Publications that reported using an “Indigenous lens” rarely articulated how this was applied, and how it informed the publication. While this can partially be attributed to structural publishing barriers, such as word count limitations, it is essential for researchers to describe how an Indigenous lens was applied as well as their role and how their perspectives inform the research process. It is not enough to note the application of an “Indigenous lens” but also how they applied this lens, particularly from a non-Indigenous standpoint. Reflecting on how their own practices, world views and experiences impacted and influenced the research outcomes and effectively and accurately represented the voices of participants in the research. Accountability in qualitative research requires the application and description of reflexive research practices in relation to the researcher and the researched. It is not possible for a researcher to completely omit researcher bias. It is therefore imperative to outline the reflexive processes, and how Indigenous peoples informed the research in a comprehensive manner in favour of upholding culturally safe, ethical and best practice qualitative research.

Aboriginal and Torres Strait Islander people should be involved in all stages of the research process

Despite ongoing calls for, and emphasis on the importance of having research to be led by Aboriginal and Torres Strait Islander people, only a quarter of publications self-reported Aboriginal or Torres Strait Islander people as lead researcher. The remaining papers were silent in reporting Aboriginal and/or Torres Strait Islander researcher(s) involvement or were led by non-Indigenous researchers. The transformative nature of Indigenous-led research is well established, [ 1 ] as such we urge all researchers to report leadership of the research in the publication.

Just over half the papers reported Aboriginal and/or Torres Strait Islander people’s involvement in data collection, with limited information provided on qualifications/training or the relationship and cultural expertise to the participants or community engaged in the research. Acknowledging the centrality of following cultural protocols and practices when conducting Yarning method, details on data collection must report this detail when applying the method.

Aboriginal and/or Torres Strait Islander involvement in analysis was seldom detailed, more frequently papers reported advisory groups, increasing cultural understanding, with and oversight as their primary role. Researchers and coders play a pivotal role in the process of thematic analysis [ 78 ]. Detailing Aboriginal and Torres Strait Islander involvement in all levels of the research conduct including the analysis is paramount to accurately representing the voices of those being researched and supporting ethical and cultural safe research. Decolonising research practice must privilege Indigenous knowledges and uphold self-determination and sovereignty which is not excluded from the analysis and reporting process. In line with recent research into Yarning application, [ 19 ] we recognise the need for refinement in the analysis process, and the importance of producing details of method and methodologies used.

As stated by Atkinson et al. [ 19 ]  “the more relational the Yarn, the greater the thickness of data, and an Indigenous Standpoint is likely to generate more relationality through shared implicit and explicit understanding for the Yarn”. Our research demonstrates that the relationality of Yarns is not consistently carried beyond the stages of data collection and into analysis, or at least, is not reported on.

We found that at times, Aboriginal research assistants were used to collect the data, but were not involved in the interpretation of the Yarns. To produce ethical, quality research, Aboriginal people should be involved in all stages of the research from conceptualisation to dissemination, including the analysis and interpretation. Understanding and conceptualising data collected from Yarning should involve Indigenous ontologies and standpoints to ensure participants stories are correctly and appropriately reported in the research results.

The role and details of Aboriginal reference/Advisory groups need to be reported

The formation of a community advisory or Aboriginal reference group (CAG/ARG) is important in ensuring governance and efficacy in the research process, as well as upholding Indigenous knowledges, sovereignty, and self-determination. The Aboriginal Health & Medical Research Council ethical guidelines state that Aboriginal and Torres Strait Islander ‘Advisory’ or reference groups must be representative of the group being studied and have knowledge or experience of the research matter and must be engaged throughout the life cycle of the project not just at the development or consultation stage  [ 16 ].

While the majority of publications reported having a CAG/ARG that provided oversight to the research process, we found that publications reported limited details on who was involved, and their specific role, particularly regarding analysis, reporting and validation of results. This detail is critical to understanding how the CAG/ARG is both representative of the group being studied and how their Indigenous knowledge, self-determination and sovereignty were upheld in the research process. While some publications offered detailed explanations of who was in the advisory group and what their role was through the research process, others simply stated that the research was overseen or guided by an Aboriginal advisory group. Offering details on the CAG/ARG is crucial, particularly when non-Indigenous researchers are engaging with Indigenous methods, such as Yarning. We question: Who validates that the methods are applied correctly? Is this left to the researcher to self-validate? And where is the research team’s accountability to the Aboriginal and/or Torres Strait Islander community being studied?

Aboriginal and Torres Strait Islander “Advisory” or reference group are critical to ethical research practice, and must not be used to rubber stamp the research process. Research that aims to improve the lives of Aboriginal and Torres Strait Islander peoples must foreground Indigenous knowledges, sovereignty, and self-determination through relationality. Watego asserts “The transdisciplinarity required to effect change requires more than a bringing together of different methodologies—it demands attention to different ways of knowing and being in a relational, rather than hierarchical, manner, recognising the limitations of different knowledge systems as well as their strengths, so that the most appropriate conceptual tools are brought to bear in addressing the grand challenges we face both now and into the future”  [ 79 ].

Academic institutions and journals require structural change to account for reporting

As detailed throughout the results and discussion section of this review, authors frequently omitted important details regarding standpoint, positioning, reflexivity, level of Aboriginal and Torres Strait Islander involvement, and explanations of methods. It is reasonable to assume that silence in some of these areas are due to barriers in publishing. Academic journals should cater to the need to report reflexivity and positionality, particularly in relation to Indigenous research, including Aboriginal and Torres Strait Islander research. Many journals have restrictive word counts and journal structures and essential reporting requirements, which create barriers to effectively reporting adequate details that demonstrate best practice, ethical and equitable research. Academic journals and existing structures should require accurate reporting to produce community relevant, scientific excellence in quality and valid qualitative inquiry, that considers and contextualises findings to the local context. Additionally, it is important to move beyond reporting qualitative rigour as simply just a check box exercise. The Qualitative Health Research (QHR) journal recently released an editorial detailing why their review process does not use checklists:

These lists ignore the value of the product of the research: They do not address the originality, the substance, the contribution, and the potential results to the actual topic—which is after all the purpose of the project itself. [ 80 ]

The editorial explains that checklist reviews can undermine the value of qualitative inquiry [ 80 ]. This authorship team suggested that beyond checklists, journals acknowledge Indigenous knowledge systems and seek contribution of Indigenous peer reviewers on the reporting of Indigenous methodologies and methods to uphold the appropriate reporting requirements [ 81 ].

Strengths and limitations

This paper reports a review of publications reporting the use of Yarning method in Aboriginal and Torres Strait Islander health research. Our review was led by an Aboriginal research team including the author of the Yarning as a legitimate research method publication [ 17 ]. Our review provides a critical analysis of Yarning method as applied to qualitative health research and provides guidance to researchers on the future use, and reporting of Yarning method. Whilst Yarning is a culturally safe method that is preferred by Aboriginal and Torres Strait Islander people, non-Indigenous researchers need to consider the significance of relationality, sovereignty, and integrity of the research in the doing through the inclusion of Indigenous leadership at every stage.

Authors note that the Yarning method is applied to other disciplines of research and as such this paper offers limitations to understanding it’s broader application. Some publications in this review also included the use of other Indigenous and/or decolonising methods which were not analysed and out of scope in this review. Further analysis on additional Indigenist methods would be insightful.

Aboriginal and Torres Strait Islander people should be at the forefront of research about them. Coloniality has embedded systemic racism in our societal structures, privileging non-Indigenous peoples and disadvantaging Indigenous peoples. Coloniality perpetuates ideas about Indigeneity which are then formed and validated through social, cultural, and political structures, practices, and beliefs. They play out in our languages, knowledges, academic discourse, personal and social interactions and popular cultures, and other domains that assign and negotiate meanings and values [ 82 ]. Universities and research are not omitted from coloniality, which too, continue to systematically privilege non-Indigenous knowledge systems, methodologies and methods. Despite cutting edge research by Aboriginal and Torres Strait Islander people since time immemorial, the exclusion of Indigenous knowledges, ways of knowing being and doing has a lasting impact that extends to peer review publications processes and policy development. Euro-Western academic hierarchies, “gold standard” reporting do not necessarily allow for, or consider, Indigenous ways of knowing or uphold Indigenous sovereignty and self-determination in the research process. Although Yarning is recognised as a legitimate research method to decolonising research practice, this method must not be used lightly to justify safety and security in research with Aboriginal and Torres Strait Islander people. It must be applied rigorously and reported accurately, describing how the different types of yarning were applied in research, the involvement of Aboriginal and Torres Strait Islander peoples at all levels of the research, and the outcomes. We found that researcher reflexivity and positioning were significantly under detailed as was Aboriginal and Torres Strait Islander ownership, stewardship, custodianship and analysis of data collected in our reviewed publications. Researchers, particularly non-Indigenous led research teams, must only report using an Indigenous method if they are willing to report adequate detail on its application and comprehensive detail on how Aboriginal and Torres Strait Islander peoples were involved in all levels of the research. Journals and other establishments should review their process to allow for these details to be documented in research publications without penalty and acknowledge the critical role of Indigenous Editors and peer reviewers. Only through this, can we uphold respectful, reciprocal, ethical, and responsible research practice.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files].

Abbreviations

Community advisory or Aboriginal reference group

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Acknowledgements

We wish to acknowledge Aboriginal and Torres Strait Islander people as the continuing custodians of the lands on which we live and work. We pay respects to the Awabakal, Worimi, Wurundjeri, Ngunnawal, Whadjuk peoples and their Elders past, present, and emerging.

No funding was received for this study. MK was supported by an NHMCR Early Career Fellowship (No. 1158670) during study period.

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Kennedy, M., Maddox, R., Booth, K. et al. Decolonising qualitative research with respectful, reciprocal, and responsible research practice: a narrative review of the application of Yarning method in qualitative Aboriginal and Torres Strait Islander health research. Int J Equity Health 21 , 134 (2022). https://doi.org/10.1186/s12939-022-01738-w

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What does it mean to conduct participatory research with Indigenous peoples? A lexical review

• Ann Dadich   ORCID: orcid.org/0000-0001-5767-1794 1 , 2 ,
• Loretta Moore 3 , 4 &
• Valsamma Eapen 5 , 6 , 7  

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To better understand and promote public health, participatory research with Indigenous peoples represents recommended practice, worldwide. However, due to the different ways such research is referred to, described, and used, it is unclear what might (and might not) warrant the term when collaborating with Indigenous peoples. As such, this article expands conceptual understandings of participatory research with Indigenous peoples, across timelines and regions.

Following a systematic search of 29 academic databases in April 2018, a lexical analysis of the methods sections was conducted, which were sourced from 161 publications across 107 journals.

The active involvement of Indigenous peoples in research that is expressly participatory is limited across all project phases. This might be because the ways in which Indigenous peoples were involved throughout were not reported – however, it might also be because Indigenous peoples were not involved in all project phases. Furthermore, descriptions differ by study location and publication timeframe – notably, studies in the region of the Americas chiefly refer to pandemics, surveyors, and art; and those published in the last two decades have given primacy to artifacts of interest.

Conclusions

Findings from this corpus of data suggest participatory research with Indigenous peoples is not always described across different project phases; furthermore, it differs according to study location and publication timeframe. This offers considerable opportunity to further this important research area via alternative methodologies that award primacy to Indigenous expertise and agency.

Peer Review reports

To redress the power imbalance in research with Indigenous peoples, participatory research represents recommended practice, worldwide [ 1 ]. This recommendation recognizes that, ‘Discrimination against… indigenous peoples… causes and magnifies poverty and ill-health’ [ 2 ]. Conventional, non-participatory approaches have largely failed to address health inequalities, with Indigenous peoples more likely to experience poor health, reduced quality of life, and premature death, relative to their non-Indigenous counterparts. Consider for instance, the ways in which some research approaches, steeped in colonialism, have subjugated Indigenous voices. As Indigenous scholar, Tuhiwai Smith [ 3 ], critiqued:

Research[ers] within late-modern and late-colonial conditions… enter communities armed with goodwill in their front pockets and patents in their back pockets… Research… on indigenous people is still justified by the ends rather than by the means… [Some] researchers… collect… beliefs systems and ideas about healing, about the universe, about relationships and the ways of organizing… The global hunt for new knowledges… brings new threats to indigenous communities… what counts as Western research… (1) allow[s] ‘us’ to characterize and classify societies into categories, (2) condense[s] complex images of other societies through a system of representation, (3) provide[s] a standard model of comparison, and (4) provide[s] criteria of evaluation against which other societies can be ranked… These are the procedures by which indigenous peoples and their societies were coded into the Western system of knowledge [ 3 , original italics].

Research on Indigenous peoples differs from with Indigenous peoples, which requires ‘relational accountability’ [ 4 , 5 ]. At best, research on Indigenous peoples yields findings of reduced validity and reliability [ 6 ]; at worst, it exacerbates the longstanding overrepresentation of Indigenous peoples who experience poor wellbeing [ 7 , 8 ].

Although the value of participatory research with Indigenous peoples is not contested, it has varied understandings [ 9 ]. For instance, Windsor and colleagues [ 10 ] described ‘a 2 × 2 × 2 × 2 factorial design to engineer the most efficient, effective, and scalable version’ of a behavioral-health intervention, which was ‘Grounded in critical consciousness theory, community-based participatory research principles’. In essence, participatory research was used to design a cost-effective intervention for wide-spread use, by ‘ensur[ing]… that research questions and procedures reflect[ed] the needs and priorities of the communities… [to] facilitate[e] uptake’. Yet another approach by Genuis and colleagues [ 11 ] reported on high-school students at a First Nation community school who were trained as co-researchers. Specifically, nine students were ‘recruited as project co-researchers’, incentivized through an ‘offer… [of] credit towards classroom assignments, as well as an opportunity to positively impact their community’. Following ‘5 training sessions with university investigators’, the co-researchers ‘conducted semi-structured… interviews’, which were primarily ‘analys[ed] by university researchers’. These two (of many other) examples demonstrate the different ways in which Indigenous peoples are involved in participatory research. Although variation within most methodologies might be expected [ 12 ], it is unclear what might (and might not) warrant the term when collaborating with Indigenous peoples [ 13 ].

Given increasing interest in such research [ 14 ], this article expands conceptual understandings of participatory research with Indigenous peoples, across timelines and regions. This was achieved via a lexical analysis of the methods sections of 161 publications, identified via a systematic review of academic databases. Aided by the software program – Leximancer – a lexical analysis involves the examination of a corpus of qualitative data to ascertain patterns in the ways in which words – and their associated phrases – travel together [ 15 ]. This is achieved via ranked lists of terms that commonly occur and co-occur, from which a thesaurus is built to delineate salient themes and the concepts, therein. This article commences with an overview of participatory research with Indigenous peoples. It then presents the findings from the aforesaid lexical analysis. The article then concludes with a discussion of key findings, and the associated implications.

Participatory research with indigenous peoples

Participatory research with Indigenous peoples prizes partnership between individuals (and/or the groups they represent) who have a stake in the research, including (but not limited to) Indigenous peoples and researchers [ 6 ]. This partnership involves equal opportunities for engagement between different individuals (and/or the groups they represent) to pursue a common purpose by sharing and generating knowledge [ 16 ]. Accordingly, participatory research can range in scope and form – for instance, it can involve individuals who identify as Indigenous, and/or communities that identify as Indigenous. The latter involves partnerships between an Indigenous community and research agencies, and can range from, ‘being consultative through community-directed to community-controlled, where community groups exercise the highest expression of autonomy over research, assisted by research institutions’ [ 17 ]. Participatory research aims to democratize scholarship and knowledge by: relegating conventional understandings of expertise and evidence; ‘shift… the balance of control towards those being researched’ [ 18 ]; and reposition scholars as participants of a process in which they listen, learn, and offer service [ 19 , 20 , 21 ]. In effect, it is the intersection of skillsets to enhance the translation of the outcomes associated with the partnership into policy and/or practice. While conventional research typically prioritizes professional and institutional interests, disciplinary conventions, and codified-forms of evidence, participatory research with Indigenous peoples prioritizes culture and community [ 19 ].

Although participatory research with Indigenous peoples can range in scope and form, it is premised on some key principles [ 22 , 23 , 24 ]. According to the World Health Organization [ 1 ], both research institutions and Indigenous peoples are to ‘enter into a research relationship as equal partners’, whereby both parties develop a proposal and endorse an agreement – however, the research should only proceed if its focus and processes align with the priorities and needs of Indigenous peoples. This is not to suggest that translating these principles into practice is always straightforward – for instance, Morton Ninomiya and Pollock [ 25 ] described accountability tensions when research teams have a responsibility to ‘the “hands off” community leaders and stakeholders involved in… research and… the “hands on” academic world, full of rules and regulations’. Nevertheless, there are many international exemplars in which such tensions have been respectfully managed with considerable success – consider for instance, a large-scale, community-based participatory research project to address the high-rate of tobacco smoking among Aboriginal and Torres Strait Islander peoples across Australia [ 17 , 26 , 27 ]. The principles espoused by the World Health Organization [ 1 ] were adapted for the purpose of a reporting framework to clearly articulate what each of the seven project phases would involve and how each would be assessed to ultimately democratize the participation of the partners. This and other international studies make a strong public health case for participatory research with Indigenous peoples [ 28 , 29 , 30 , 31 , 32 ].

In addition to being respectful, such research can help to address intractable public health problems, where conventional epidemiological approaches have achieved limited success [ 33 ]. For instance, following their ‘comprehensive literature review’, Bath and Wakerman [ 20 ] found some evidence that participatory approaches are associated with improved health outcomes within Indigenous communities. Similarly, in their systematic review on community development projects in Australian Indigenous communities, Snijder and colleagues [ 34 ] identified two studies that reported statistically significant outcomes. Although there is a dearth of empirically-robust research (as conventionally-defined), available evidence suggests that participatory research with Indigenous peoples holds potential and is worthy of future scholarship.

The aim of this article is to determine what it means to conduct participatory research with Indigenous peoples. Specifically, it examines how such research was described. This was achieved via a lexical analysis of relevant publications. Given the aforesaid aim of this article, all publications that are expressly participatory were considered. Rather than appraise the quality of studies with reference to an established research standard, this approach was deemed appropriate because of the varied understandings of such research with Indigenous peoples [ 9 ]. As such, the aim of this article is not to assess research quality – but rather, to investigate how research that is expressly participatory was described. Details of this lexical review are described as follows.

Search strategies

In April 2018, search strategies were deployed across 29 purposely-selected academic databases to identify all publications on participatory research with Indigenous peoples. Guided by previous research [ 35 ], the search strategies encompassed euphemisms for Indigenous (19 terms) and participatory (12 terms) within the publication title. Although potentially limiting, more inclusive search strategies largely served to identify irrelevant publications. The breadth of these publications might be partly due to multifaceted nature of both Indigeneity and participatory research. As such, a focused search strategy was used. Publications were included in this review if they met all three of the following criteria: (1) it represented a research publication, rather than a letter, a commentary, or an editorial, to ensure the inclusion of empirical research; (2) it did not represent a systematic, narrative, or literature review or meta-analysis, given the limited methodological detail typically reported from the publications that are included within such reviews; and (3) it was published in the English language. Of the 473 publications identified, 161 met these three criteria (see Fig.  1 and Additional file  1 ). This was determined by one author and cross-checked by another for accuracy. Discrepancies in this process were reconciled through consensus. The methods section from each publication was then extracted for a lexical analysis. Collectively sourced from 107 journals, the earliest publication was published in 1970, and the latest, in 2018.

Flow Diagram of Study Selection [adaption of PRISMA, 36 ]

• Lexical analysis

The lexical analysis was aided by Leximancer – data-mining software that uses Bayesian reasoning to detect key concepts and reveal their relationships [ 37 ]. By identifying frequently occurring and co-occurring words, Leximancer visually maps concepts that reflect topics within the text [ 38 ]. The maps convey ‘the main concepts in the text and their relative importance; the strengths of links between concepts (how often they co-occur); and similarities in contexts where links occur’ [ 39 ]. Clusters of concepts within a map – known as themes – suggest contextual similarity [ 40 ]. Themes are color-coded to signify those that are (and are not) important, whereby the ‘most important theme appears in red, and the next hottest in orange, and so on according to the colour wheel’ [ 41 ]. Further detail on Leximancer can be sourced from previous publications [ 42 , 43 ].

For four key reasons, Leximancer was purposely selected to aid this review. First, it can offer a ‘helicopter’ view of a substantial body of qualitative data, illustratively portraying relationships and patterns between representative themes and concepts [ 44 ]. Second, as a form of computer assisted qualitative data analysis software (CAQDAS), it offers a systematic, logical, and an efficient method to ‘text mine’, allowing the researcher to interactively connect themes and concepts with the data. As Hyndman and Pill [ 45 ] noted:

The advantage of Leximancer is that it extracts a populated list from the text document that displays the weighted term classifications and connections between key words. From this list it creates concept maps that illustrate the level of connections between key words in the text being analysed… In other words, the software processes the level of relationship between concepts and the rate at which concepts and the significantly related terms appear close to each other within the text.

Third, unlike alternative approaches when systematically analyzing qualitative data – like the oft-cited use of thematic analysis [ 46 , 47 , 48 ] – Leximancer can help to reveal, and make sense of different findings [ 49 ]. Given its capacity to offer an ‘unsupervised’ view of the data [ 50 ], it can facilitate ‘broader opportunities for interrogating the text’ [ 51 ] by grounding the analysis in the voice of the authors of the data. This is not to suggest the limited value of alternative approaches – but rather, Leximancer can direct researcher attention to the unexpected (as well as what might be expected). As Smith [ 52 ] observed:

The meaning contained within any data set is very much dependent on the way you interpret it. Not only do you need to carefully decide what things to measure, but you need to understand what the analysis method is trying to achieve, and finally, you need to understand what this result actually tells you about your world… the only value to be obtained from textual data is a more accurate understanding of the way the authors of the data viewed some aspect of their world… if we assume that the task is for the analyst to understand the human meanings contained with their text data, the role of software such a Leximancer is… to let the data generate a transparent model which can be interpreted by the analyst, so that this person may efficiently conduct a sense making examination of conceivably vast amounts of text.

Fourth, although Leximancer has been used to systematically review literature in other fields – including (but not limited to) infection control [ 43 ], knowledge management [ 53 ], marketing [ 54 ], nursing [ 55 ], and physical education [ 45 ] – it is yet to be used to ‘text mine’ literature on participatory research with Indigenous peoples. Leximancer was therefore used because it was fit-for-purpose, helping to address the aim of this article and ensure the unexpected would be balanced with the expected.

Leximancer was used in two steps. First, once the methods section from each publication was collated, the ‘discovery’ mode was used to, ‘see what concepts were automatically generated by Leximancer without intervention’ [ 56 ]. Illustrating the automatically-generated relationships within the text, in the first instance, helps to ‘create learning and understanding’ [ 57 ] and identify ways to make sense of these relationships. Second, for comparative value, each publication was associated with two tags. Tagging helps to compare the conceptual content of different data [ 58 ]. To determine whether (and how) study location influences the ways participatory research with Indigenous peoples is described, each publication was tagged according to one of six regional groupings, as defined by the World Health Organization [ 59 ]. To determine whether (and how) time influences the ways participatory research with Indigenous peoples is described, each publication was tagged according to one of four timeframes – namely: ‘Seventies and Eighties’ (given that only one publication was published in 1970); ‘Nineties’; ‘Noughties’; and ‘Tensies’ (reflecting accepted vernacular). Once tagged, and guided by previous research [ 39 ], thirty concepts were profiled within each concept map to avoid diluting the focus of each map. To identify differences between locations and timeframes, the thirty concepts were profiled using the themed discovery setting, ‘Concepts in EACH’, to ‘discover concepts that distinguish… categories from one another’ [ 41 ]. For succinctness, attention is awarded to the word-like concept (rather than pronouns) that is most pertinent to each tag, as indicated by the likelihood percentage. Calculated by Leximancer, the likelihood percentage denotes the proportion of text segments that is shared by a tag concept and another concept, thus providing both directions of conditional probability [ 60 ].

The discovery mode concept map reveals four themes – namely: community , data , health , and change (see Fig.  2 ). These highlight the key clusters of concepts – or topics – represented within the text. Theme position illustrates the relationships between the themes. Consider the prominence of community , which appears in red and overlaps with the less-prominent themes, particularly data . This suggests that when the publications refer to community (and the concepts therein), they are inclined to refer to data (and the concepts therein):

Discovery Mode Concept Map (visible concepts: 100%, theme size: 60%)

The team comprised health services researchers, physicians, Indigenous researchers, social scientists, data analysts, nurses, a community development specialist, and community-based experts and participants such as FNs [First Nations] Elders, health care workers and community members [ 61 ].

Given the focus of this review and the purposeful analysis of the methods sections, the absence of a concept that explicitly denotes participatory , participation , or participate is curious. Although the concept, involved , is evident within the salient theme, community , it is most-likely to be connected to the concept, project . This suggests that when the publications refer to being involved , they are inclined to refer to a project :

As well, in Saskatchewan, Sage, another participant described why she became involved in this PAR project. She said: I joined (this research project) because I know that I’ll get my word out [ 62 ].

Although this finding might appear intuitive, the concept, involved , is dissociated from specific project phases. Consider its distance from intervention , control , survey , conducted , interviews , and analysis . Furthermore, these are distanced from germane concepts like, Indigenous and Aboriginal . This suggests when the publications mention involved , Indigenous , or Aboriginal they are disinclined to refer to intervention , control , survey , conducted , interviews , and analysis . This is not to suggest that the publications do not describe how Indigenous peoples were actively involved in the collection or analysis of data – but rather, the methods, as presented in this corpus of data, suggest the former concepts (and the words within their thesaurus) seldom travel with the latter concepts (and the words within their thesaurus):

The Family Spirit intervention was staffed to provide regular on-site supervision, weekly cross-site conference calls and quarterly site visits. A policy and procedures manual guides implementation of the curriculum and gives home visitors flexibility to address mothers’ and families’ scheduling needs [ 63 ].

Perhaps the most explicit reference to participatory research is CBPR (community-based participatory research). Although positioned between community and research , it is in closer proximity to the latter. As such, CBPR , as described within the methods sections, is inclined to travel with words that denote research , rather than be equidistant from words that denote community :

A Community-Based Participatory Research (CBPR) framework was used to develop a qualitative study around young Indigenous people’s sexual health. Our participatory approach… involved a range of strategies to ensure the project was a genuine collaboration between university researchers and Indigenous community members, and in particular that young Indigenous people were actively involved throughout [ 64 ].

Given the publications explicitly focus on participatory approaches with Indigenous peoples, it is encouraging to observe research in close proximity to process , involved , development , design , and partnership . This suggests the methods sections speak of processual or progressive scholarship. In addition to the concept map and the exemplary excerpts, this is supported by the absence of concepts that denote outputs and deliverables:

Key terms and significant issues for data analysis were identified through a collective contribution process by the elders, leaders, knowledge-holders and youths during a subsequent traditional sharing circle. Participants wanted to be sure their needs and dreams were included in the draft findings, so that this research would have an impact on policy level and speak on behalf of them [ 65 ].

Another curious finding is the salience of health as a theme – this is because the search strategy was devoid of the term, health. Furthermore, of the academic databases searched, 15 were not (mental) health-specific. This suggests that wellbeing is a prominent focus in participatory research with Indigenous peoples, as presented in these systematically-identified publications:

People recognize that these diseases are transmitted by insects, which they call shidru (Triatominae, kissing bugs) for Chagas and shirakbina (Anopheles, mosquitoes) for malaria. Local health services consist of an infirmary attended by a nurse, and the nearest healthcare center requires 2 h of travel by river [ 66 ].

As illustrated by the grey spanning tree, health is most-likely to be connected with the concepts, program , based , experiences , education , care , services , and community . The spanning tree portrays, ‘the most-likely connections between concepts (like a road map of highways), but there are other (less-strong) connections between concepts (like backstreets)’ [ 58 ]. This finding is noteworthy for two key reasons. First, these connections speak of initiatives to intercede in, and/or affect wellbeing. This extends to the concept, experiences :

We explained that the data collected at these initial encounters would then inform the semi-structured interviews intended to further explore the young people’s understandings and experiences of health in the hopes that this would lead to a youth-led project [ 67 ].

Second, as per the preceding excerpt, references to these initiatives travel with references to particular cohorts – notably, youth , women , family , students , and children . These demonstrate the research priorities within this corpus of data. Consider the concept, youth , and its proximity to traditional and Aboriginal . This illustrates the connectedness between discourse pertaining to youth and Indigenous peoples and customs:

The focus group began with a welcome, introductions and an Inuk elder ceremonially lighting the qulliq , a traditional oil lamp. Apart from introductory and concluding activities, there were four main segments: understanding violence, coping with violence, preventing violence, and what Inuit youth should know about violence [ 68 , original italics].

Although reference to the aforesaid cohorts is noteworthy, so too is the absence of expressed reference to others. In this regard, the concepts automatically generated by Leximancer did not include references to (or euphemisms for) men, the elderly, infants, people with a disability, or people who identify as lesbian, gay, bisexual, trans, and/or intersex, among others. This is not to suggest the publications ignored these cohorts, but rather, they did not feature prominently in the methods sections of these publications, all of which pertained to participatory research with Indigenous peoples.

In the context of publications that expressly focused on participatory research with Indigenous peoples, there is a curious divide between the themes, data and change . The concept map suggests that discourse pertaining to participants , study , focus , groups , analysis , questions , interviews , intervention , and survey , is not well-connected with that pertaining to practices , values , and culture :

This pedagogy is appropriate for Samoans since they have an oral tradition that values collective decision-making, experiential education, trust building, and interpersonal interactions [ 69 ].

Although it is not the purpose of this article to hypothesize reasons for this divide, this finding does not portray discourse pertaining to conventional demonstrations of research – including the collection and analysis of data – as inextricably connected to that pertaining to cultural values and practices. But rather, they appear disconnected.

The 161 publications reported studies that were conducted across at least 16 nations, with one publication encompassing ‘communities from Siberia to Norway’. These publications represented five (of six) regional groupings, the exception being the Eastern Mediterranean region. Although the concept map is seemingly busy, this was necessary to ensure all five groupings are represented. This helpful comparison suggests study location influences the ways participatory research with Indigenous peoples is described, with variation between studies conducted within the region of the Americas, and those conducted elsewhere (see Fig.  3 ). Studies conducted within this region refer chiefly to the concepts, pandemic (100%), surveyors (100%), and art (100%):

Concept Map tagged by Regional Groupings (visible concepts: 100%, theme size: 60%)

to understand the barriers participants faced and suggested improvements for the pandemic response, the interview questions were based on the aspects of a health sector pandemic response outlined in academic literature [ 70 , Region of the Americas].

Conversely, those conducted within the remaining four regions feature discourse pertaining to: discharge processes (Western Pacific Region: 100%); the young (European Region: 17%); practices (South-East Asia Region: 17%; African Region: 5%); and care (African Region: 5%). These nuances reveal two notable findings. First, there are shared interests among the studies conducted in the South-East Asia and African Regions, with reference to personal, social, and organizational practices:

Hygienic practices common in Kerala are not universally adopted; over a quarter of the households do not systematically boil their drinking water. Their health needs are great [ 71 , South-East Asia Region].

Second, studies conducted in the Western Pacific Region are strongly connected with discourse on non-Indigenous healthcare conventions. These include the admission and release of patients from health services, and the artifacts accrued to codify patient care:

First, client details were hand-written into a service admission book upon intake and discharge. Data collected included: demographics; referral type; and service utilization characteristics [ 72 , Western Pacific Region].

The 161 publications reported studies across the seventies and eighties ( n  = 2), the nineties ( n  = 6), the noughties ( n  = 43), and the tensies ( n  = 110). The centrality of the themes, community and people , suggest their salience across the decades (see Fig.  4 ). Although the concept map is heavily populated with concepts, this was necessary to ensure all four periods are represented. However, the likelihood percentages reveal key differences between these periods. Specifically, unlike more recent publications, those published the earliest are most-likely to be associated with discourse regarding children (Seventies and Eighties: 9%) and action (Nineties: 9%) – while those published during the last and current decades are strongly associated with discourse pertaining to surveyors , art (Noughties: 100%), and discharge (Tensies: 100%). These findings reveal a pattern in the ways participatory research with Indigenous peoples are described. While the methods sections of earlier publications present language about particular cohorts and change efforts to address identified issues, those of more recent publications award primacy to artifacts that denote areas of interest, including culture, the terrain, and service-use:

Concept Map tagged by Timeframes (visible concepts: 100%, theme size: 60%)

Hospital representatives reported that they were receiving fewer requests from community health centres for ‘missing’ discharge summaries and that the content of the discharge summaries had improved [ 73 , Tensies].

The importance of participatory research with Indigenous peoples has international recognition. Yet there are discrepancies in the ways such research is conducted and reported. Participatory research with Indigenous peoples can help to improve research quality and optimize the relevance of associated outcomes for Indigenous peoples [ 20 , 34 ]. It is important for researchers to reflect on how they engage with Indigenous peoples, given limited progress to redress longstanding health inequalities [ 74 , 75 ].

The key finding from this lexical review is that publications that explicitly pertain to participatory research with Indigenous peoples do not always demonstrate Indigenous participation across different project phases. For instance, discourse regarding Indigenous peoples is distanced from that regarding the collection and analysis of data, and the reporting of the associated findings. Furthermore, the ways the research is collectively described suggests a disconnect between research and cultural values and practices. Although it is beyond the scope of this review to account for these findings, it is possible that although the studies were participatory, the ways in which Indigenous peoples were involved throughout were not reported – however, it might also be because Indigenous peoples were not involved in all project phases.

An examination of participatory research with Indigenous peoples across regions and decades reveals key differences. For instance, studies conducted within the Americas allude to pandemics, surveyors, and art; while those conducted within the Western Pacific region feature Western healthcare processes – this demonstrates differences in the focus of studies within each region. Over time, there have been considerably more publications reporting participatory research with Indigenous peoples – yet these descriptions have changed over time. While early publications consider particular cohorts of Indigenous peoples and change efforts to address the issues they experience, later publications demonstrate an interest in codified-forms of culture, the terrain, and service-use.

Collectively, these findings suggest that, across the globe and over time, participatory research with Indigenous peoples is understood, conducted, and described in disparate ways. Although disparity can optimize inclusiveness, it can be problematic for (at least) two reasons. First, it potentially dilutes scholarship, stymies the development of innovative solutions, and compromises theory-development – this is because researchers and Indigenous peoples engage with, and among each other without shared understandings. Second, research with Indigenous peoples might be inappropriately labelled as participatory and exacerbate longstanding inequalities [ 7 ].

Although the findings from this lexical review are illustrative, three limitations warrant mention. First, given the disparate ways in which participatory research and Indigenous peoples are described, it is possible that some relevant publications were obscured by the indexing systems used by the academic databases that were searched. Despite the comprehensiveness of each database, the terms that were searched are referred to, and defined in disparate ways. Second, because participatory research with Indigenous peoples is understood in different ways, the accounts reported in the publications could not be verified. Third, Leximancer regulates researchers’ analysis – although this can strengthen qualitative research [ 48 ], the use of alternative approaches, like (but not limited to) thematic analysis [ 45 , 46 , 47 ], might yield different findings.

Despite the aforesaid limitations, the key finding from this lexical review has implications for scholars, practitioners, and Indigenous peoples. For scholars, given the importance of impact, this review would suggest that there is much scope and opportunity to actively engage Indigenous peoples in all research phases to improve public health initiatives and redress longstanding health inequalities. Several methodologies have a demonstrated capacity to enhance engagement – consider for instance, citizen social science [ 76 ] and video reflexive ethnography (VRE, [ 77 , 78 ]). Informed by both crowdsourcing and citizen science, citizen social science involves avocational researchers who examine social phenomena by collecting and analyzing data, disseminating the associated findings, and translating these into practice. In the context of participatory research with Indigenous peoples, citizen social science might involve inviting Indigenous peoples to collect, access, and/or critique practices that influence public health; share insights and experiences; identify knowledges and conditions that shape the translation of preferred practices into different contexts; and co-design resources (sensu lato ) to promote public health outcomes.

VRE purposely harnesses the expertise of individuals who are typically relegated to the position of research subjects – like Indigenous peoples. Specifically, non-academic researchers are invited to collaborate as co-researchers by: featuring in and/or gathering video-recordings; analyzing the recordings; and understanding practices and experiences [ 79 ].

For practitioners, the findings provoke potentially challenging questions about how they conduct research and/or quality improvement exercises, and whether current practices serve to reinforce health inequalities [ 7 ]. For Indigenous peoples, given the seeming importance of their involvement in, and research about healthcare [ 80 ], these findings demonstrate the relative absence of participatory research. This then is a call to Indigenous peoples to hold scholars and practitioners to account by challenging, if not pushing the agenda of academic institutions, health services (sensu lato ), and the governments that fund them.

This lexical review suggests the active involvement of Indigenous peoples in research that is expressly participatory is limited across all project phases. Notwithstanding opportunities to engage Indigenous peoples in a ‘project’, there is limited clarity regarding their involvement in the collection and analysis of data, and the reporting of the findings. This suggests the expertise and skills of Indigenous peoples are not always harnessed. With exceptions [ 11 , 81 ], Indigenous connections to research – as depicted in this corpus of data – was sometimes driven by (non-Indigenous) researchers who ‘invited’ [ 82 ] the participation of Indigenous peoples, who were – at times – at arm’s length of the project phases. As suggested by the previously noted implications, participatory research with Indigenous peoples is everybody’s business. There are opportunities that scholars, practitioners, and Indigenous peoples might pursue if, as per the World Health Organization [ 1 ], ‘Health research involving Indigenous Peoples… [is] to be organized, designed and carried out in a manner that takes account of cultural differences, is based on mutual respect, and is beneficial and acceptable to both… [research institutions] and [Indigenous peoples]’.

Availability of data and materials

Not applicable.

Abbreviations

Computer assisted qualitative data analysis software

Community-based participatory research

First Nation

Video reflexive ethnography

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AD conceived, led, and managed the study, devised and deployed the search strategies, prepared the data for analysis, interpreted the data, and led the development of the Methods, Results, and Discussion sections of the manuscript. LM developed the Introduction section of this manuscript, devised and deployed the search strategies, extracted the data, and contributed to the Discussion section of the manuscript. VE reviewed and critiqued the manuscript, offering expertise regarding research with vulnerable populations. All authors read and approved the final manuscript.

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Associate Professor Dadich is a registered psychologist, a full member of the Australian Psychological Society, and a Justice of the Peace in New South Wales. She has accumulated considerable expertise in health service management, notably knowledge translation. This encompasses scholarship on the processes through which different knowledges coalesce to promote quality care. This is demonstrated by her publishing record, which includes over 150 refereed publications; the research grants she has secured; and the awards she has received. A/Prof. Dadich holds editorial appointments with several academic journals, including the Australian Health Review and BMC Health Services Research. She is also the Deputy Director of the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE) Knowledge Translation Strategic Platform; she co-chairs the Australian and New Zealand Academy of Management (ANZAM) Health Management and Organisation (HMO) Conference Stream; and she co-convenes the ANZAM HMO Special Interest Group. Additionally, A/Prof. Dadich supervises doctoral candidates and teaches undergraduate units on change management, innovation, creativity, and organisational behaviour.

Ms Loretta Moore is a Clinical Psychology Registrar at Autism Spectrum Australia (Aspect). Prior to this, she provided research assistance at the Academic Unit of Infant, Child, Adolescent Psychiatry South West Sydney. Professor Valsamma Eapen has expertise in child and adolescent psychiatry, specifically: epidemiology; genetic underpinnings; neurocognitive processes; and clinical presentations of neurodevelopmental disorders. She leads the Early Life Determinants of Health (ELDoH) Clinical Academic Group within the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE) – an Advanced Health Research Translational Centre (AHRTC) approved by the National Health and Medical Research Council (NHMRC).

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Dadich, A., Moore, L. & Eapen, V. What does it mean to conduct participatory research with Indigenous peoples? A lexical review. BMC Public Health 19 , 1388 (2019). https://doi.org/10.1186/s12889-019-7494-6

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Advancing health equity for Indigenous peoples in Canada: development of a patient complexity assessment framework

• Anika Sehgal 1 ,
• Rita Henderson 1 ,
• Adam Murry 2 ,
• Lynden (Lindsay) Crowshoe 1 &
• Cheryl Barnabe 3  

BMC Primary Care volume  25 , Article number:  144 ( 2024 ) Cite this article

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Indigenous patients often present with complex health needs in clinical settings due to factors rooted in a legacy of colonization. Healthcare systems and providers are not equipped to identify the underlying causes nor enact solutions for this complexity. This study aimed to develop an Indigenous-centered patient complexity assessment framework for urban Indigenous patients in Canada.

A multi-phased approach was used which was initiated with a review of literature surrounding complexity, followed by interviews with Indigenous patients to embed their lived experiences of complexity, and concluded with a modified e-Delphi consensus building process with a panel of 14 healthcare experts within the field of Indigenous health to identify the domains and concepts contributing to health complexity for inclusion in an Indigenous-centered patient complexity assessment framework . This study details the final phase of the research.

A total of 27 concepts spanning 9 domains, including those from biological, social, health literacy, psychological, functioning, healthcare access, adverse life experiences, resilience and culture, and healthcare violence domains were included in the final version of the Indigenous-centered patient complexity assessment framework.

Conclusions

The proposed framework outlines critical components that indicate the presence of health complexity among Indigenous patients. The framework serves as a source of reference for healthcare providers to inform their delivery of care with Indigenous patients. This framework will advance scholarship in patient complexity assessment tools through the addition of domains not commonly seen, as well as extending the application of these tools to potentially mitigate racism experienced by underserved populations such as Indigenous peoples.

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Introduction

Indigenous peoples in Canada include First Nations, Métis , and Inuit peoples, who are the descendants of original inhabitants of the territories claimed in the British North American Act; these peoples now represent 5% of the total country’s population [ 1 , 2 ], exceeding the growth rate of the non-Indigenous population [ 3 ]. Preceding European settlers, Indigenous peoples had established sophisticated self-governing nations reflecting their distinct cultures and diverse languages [ 4 , 5 ]. Prior to European contact, in general, Indigenous peoples had good health buffered by active ways of life and balanced, nutritional diets that promoted longevity [ 6 , 7 , 8 ]. Colonization was an ethnic and cultural genocide with devastating impacts that have persisted until the present-day [ 9 , 10 , 11 ]. Calculated practices and policies such as land displacement, forced removal of children from their communities, and the spread of novel and deadly diseases by European settlers extinguished many Indigenous communities and burdened those who survived [ 12 , 13 , 14 , 15 , 16 , 17 ], undermining their Ways of Being, Doing, and Knowing [ 18 , 19 ]. Ample research has linked the longstanding impacts of colonialism directly to the burden of disease and poverty that is experienced by Indigenous peoples today [ 20 , 21 , 22 ]. The current study seeks to extend beyond profiling such impacts to identify possibilities for orienting healthcare providers (HCPs) to better respond to the resulting health inequities.

Though Canada has now embarked on a journey of reconciliation with Indigenous peoples to acknowledge the past and its present-day impacts [ 23 , 24 ], the consequences of forced assimilation cannot be entirely undone and are most evident within the vast health inequities that exist between Indigenous and non-Indigenous peoples [ 25 , 26 , 27 ]. In addition to significantly lower life expectancies than their non-Indigenous counterparts [ 28 , 29 ], Indigenous peoples are disproportionately burdened by diabetes [ 30 , 31 ], problem substance use [ 32 , 33 ], perinatal health inequities [ 34 ], arthritis [ 35 ], and mental health concerns [ 36 , 37 ] among many other health problems [ 20 , 38 ]. While persistent disparities attributed to historical consequences have shaped the health of many Indigenous peoples [ 39 , 40 ], current healthcare systems continue to amplify these inequities through entrenched and systemic racism, played out in discrimination, unequal treatment, and outright violence towards Indigenous peoples [ 41 , 42 ]. Racism has been described as an “epidemic” within Canadian healthcare systems and a significant contributor to poorer health outcomes by means of stress and harm arising from discriminatory interactions [ 43 , 44 , 45 ]. Racial discrimination is also evident in the foundation of healthcare systems, which operate on a Western biomedical epistemology of health that tends to situate disease within the physical bodies of individual patients [ 46 , 47 , 48 , 49 ], dismissing repercussions of a colonial legacy impacting genetically, culturally, and geographically diverse populations with a shared experience of oppression from colonization [ 50 , 51 ].

With healthcare systems denying Indigenous peoples’ needs and priorities [ 52 , 53 , 54 ], Indigenous patients’ become viewed increasing through the lens of having “complex health needs” [ 55 , 56 ]. Factors that contribute to this “complexity” are rooted in a legacy of colonization yet often go unnoticed in clinical settings, creating discordance between Indigenous patients and their HCP, as well as discordance between Indigenous patients and broader health systems [ 57 , 58 ]. Although there is no universal and agreed-upon definition of patient complexity and/or health complexity (terms often used interchangeably within the literature) core indicators include higher healthcare resource utilization, increased need of support, higher risk of adverse health outcomes, and lower satisfaction with care [ 59 , 60 ]. It is however agreed that patient complexity is not simply co- or multi-morbidity which is marked by the presence of two or more diseases [ 61 ]. While co- and/or multi-morbidity may cause a patient to present as “more” complex than patients with a single disease, as in defying easy resolution to their conditions, it is not the only factor that causes a patient to present as complex [ 61 ].

Patient complexity is deemed to arise from a patient’s socioeconomic status, environmental and mental health factors, along with the coordination of care and medical decision making which can all complicate a patient’s diagnosis and/or course of treatment causing complexity to arise [ 62 , 63 ]. Identified domains of patient complexity include:

“demographics (e.g., age, sex, race, and culture), patient personal characteristics or behavior (e.g., communication, burden of disease, coping strategies, and resilience), socio-economic factors, medical, and mental health (e.g., severity of illness, psychiatric disorders, addiction, cognitive impairment), patient risk of mortality, and healthcare system (e.g., care coordination and healthcare utilization), medical decision-making, and environment (e.g., pollution and neighborhood).” [ 62 ]

While the conceptualization of patient complexity may be novel to the Western biomedical understandings of health, it serves to reaffirm that broader social factors external to individuals and their physical bodies remain largely unexplored in clinical practice [ 64 ].

Given that health inequities across large populations, such as Indigenous peoples, can translate into a higher burden on healthcare systems by way of taxing limited available resources [ 65 ], identifying and acting on patient complexity to improve care may feasibly promote better resource allocation to meet patient needs. Patients with complexity often require interventions that are beyond the scope of typical biomedical care and the training of most HCPs [ 63 ], which is compounded by healthcare systems being ill-equipped to provide HCPs the appropriate resources necessary to care for patients [ 64 ].

Identifying patient complexity is increasingly important, therefore a variety of instruments exist to identify and address patient complexity within different healthcare settings, outpatient or in-patient (including hospitals, treatment centers, and long-term care facilities). Patient complexity assessment tools (PCATs) have emerged as means to aid HCPs in collecting vital information to more effectively deliver care [ 66 , 67 , 68 , 69 ]. PCATs may provide a comprehensive assessment that considers all aspects of a patient’s needs, and they are inclusive of the patient's experience of their own health [ 66 , 67 , 68 , 70 ]. PCATs have been noted to enhance patient engagement, more accurately identify the source of complexity challenging care plans, and allow HCPs to engage in appropriate courses of action (e.g. referrals), to improve the health of a patient with complexity [ 66 , 67 , 68 , 70 ].

PCATs follow two common formats, these being: i) a face-to-face interview between a patient and provider where the provider determines the responses within the PCAT, or ii) for patients to complete in written or digital form on their own in a self-assessment method [ 65 ]. PCATs may be specific to in-patient or outpatient populations, and in the case of some populations such as the elderly, PCATs may be applicable to those outside of healthcare settings too [ 65 , 71 , 72 ]. Though PCATs present great utility in identifying patient needs, sources of their complexity, and their resources, limited longitudinal data supports their utility beyond these. Few studies have investigated associations between a patient’s complexity and their subsequent healthcarerelated costs [ 73 , 74 , 75 ] and impacts on HCPs [ 76 ].

Despite utility for general patient populations, existing PCATs remain inadequate to effectively address the needs of Indigenous patients, as factors most relevant to Indigenous populations often remain under-explored [ 55 ]. HCPs rarely understand the full scope of the contributors of poor health that arise from colonial traumas and the impacts of structural inequities that continue to influence the health of Indigenous peoples [ 50 , 77 ]. Recognizing this gap, the current research aims to identify components that are critical to include in a PCAT developed for use with Indigenous patients. A program of research was undertaken to a) determine the extent to which existing PCATs contain domains for inquiry relevant to the care of Indigenous patients [ 55 ], b) explore the components of health complexity among Indigenous patients and the circumstances that allow it to persist [ 56 ], and c) identify the most effective constructs that characterize these complexities. The present study aims to engage a diverse panel of healthcare experts to reach consensus on which domains, concepts, and items are critical to effectively assess health complexity among Indigenous patients. Concepts are defined as constructs that represent a logical category while items are those which measure something. This work describes the development of an Indigenous-centered patient complexity assessment framework. The framework will then ultimately be used to derive an appropriate PCAT.

Positionality

The first author, AS, is a settler woman who completed this study as part of her PhD research. The second author, RH, is a settler woman and medical anthropologist who works as an assistant professor and primary care models of care scientist. The third author, AM, is a man of Ukrainian, Irish and Apache descent, and works as an assistant professor of Indigenous psychology. The fourth author, LC, is a Piikani First Nation’s man who works as an associate professor, family physician-scholar and assistant dean, and was a co-supervisor for the first author. The last author, CB, is a Métis woman and a mid-career clinician-scientist in rheumatology and health services research who was the primary supervisor for the first author. As a collective, the team was composed of individuals from both Indigenous and non-Indigenous backgrounds. The authors purposefully approached the research to bring forth unique perspectives with a shared commitment to doing research in a ‘good way’ respecting Indigenous research methodologies and remaining conscious of biases and assumptions.

Development of core framework structure and candidate item pool

The framework was developed over the course of four main phases. In the first phase, the core framework structure was identified primarily through review of existing PCATs. In the second phase, the framework was informed by the lived experience of Indigenous patients to embed additional domains relevant to this patient population. In phase three, the framework was refined and categorized logically. Finally, in phase four, the framework was verified with expert consensus. An overview of the phases of this study is presented in Fig. 1 .

Phases of developing Indigenous-centered patient complexity assessment framework

A scoping review was conducted to identify all existing tools and items, and to assess these in terms of the extent to which they are inclusive of social realities that shape Indigenous health [ 55 , 78 ]. The review determined that no existing tools are broadly suitable to the needs of Indigenous patients and that existing concepts within many tools need heavy contextualization in order to effectively assess complexity among Indigenous patients [ 55 ]. To identify additional domains and concepts of complexity, nine urban Indigenous patients (seven females, two males) were recruited to participate in semi-structured relational conversations with AS to explore the factors contributing to health complexity (see Appendix A for interview guide). Participants were from diverse Indigenous backgrounds but resided in [namewithheld] region where this study took place. The interview guide was pre-tested with the research team (RH, AM, LC, and CB) prior to data collection. Interview data was co-coded with an Indigenous health expert to ensure findings would be culturally sensitive and respect the perspectives of Indigenous peoples. Data was further refined with the research team. Adversity arising from material resources and healthcare interactions were identified as sources of health complexity that elicit psychological responses among patients [ 56 ]. Drivers of resilience and other protective factors were also identified that work to prevent health complexity [ 56 ]. A targeted search based on additional factors identified through the patient interviews was conducted to identify pre-existing instruments that assess these additional domains to further populate the candidate item pool.

Refinement and contextualization of framework and candidate item pool

Based on synthesized knowledge from the scoping review and the patient interview study, the third phase of the study outlined here aims to (a) contextualize the most significant emergent concepts to better align with the realities of Indigenous patients; (b) remove redundant items from the pool of candidate items (i.e., concepts and queries for potential inclusion in an Indigenous-focused PCAT); and (c) modify existing items within the concepts in the candidate item pool to better reflect the needs of Indigenous patients. This was done by AS, LC, and CB. Concepts were contextualized (see Table 1 ) by leveraging a constructivist paradigm [ 79 , 80 , 81 ] and building upon the experiences of both LC and CB in their clinical practice with Indigenous patients [ 82 ]. This was an iterative, reflective, and time-intensive process which consisted of five meetings over the course of 4 months to review an item pool of over 300 items.

Redundancy was common within the item pool as several items asked the same questions but with phrasing variations; therefore, these were merged into one item when duplicated. For example, many items asked “what is your age?” or “please indicate your age,” – these were merged into a single item that upheld its core concept to reduce repetition. Existing items were modified as per established recommendations for adaptations of research instruments [ 83 ]; they were also adjusted to keep operational equivalence [ 84 ], which refers to items kept within similar formats to their original state, including the measurement scale that was used originally [ 85 ]. Broader concepts were adjusted to better suit use with an Indigenous population [ 78 , 86 ]. For example, we broadened the concept of income which commonly asked the patient how much money they made annually to include considerations of the extent to which their money may be going to support others in their household.

Modified e-Delphi consensus process

The RAND/UCLA appropriateness method [ 87 ] was chosen to define the domains and concepts and then refine the item pool. Through a modified e-Delphi consensus process [ 88 , 89 , 90 ], concepts were verified to be included in an Indigenous-centered complexity framework along with essential items for collecting information about these concepts. To generate input from diverse perspectives, a purposive panel of HCPs, researchers, and policymakers who work within the field of Indigenous health in Alberta, Canada were identified and invited to participate in this phase. Experts were recruited via email to participate in a 3-round modified e-Delphi consensus process [ 90 ] carried out over the course of 4 weeks (October 3rd – November 1st, 2022) using the Qualtrics platform for electronic surveys in the following order:

Orientation to the modified e-Delphi consensus process

Round #1: voting on concepts

Provide a report summarizing results and free-text responses

Round #2: voting on items

Group discussion

Round #3: voting on items again

Honoraria for experts was not provided therefore only those who felt a commitment towards this work participated. The three rounds progressed attention from identifying concepts, to ranking effectiveness, to discussing and reviewing prioritized items. To launch the e-Delphi consensus process, an introductory orientation meeting was held with the panel of experts to provide an opportunity to ask and address any uncertainties about the process. In Round #1, experts rated each of the overarching concepts based on whether or not they should be included in a tool of this nature, ranking these on a scale of 1 (absolutely not) to 9 (absolutely yes). Free-text fields were provided for each concept for experts to submit any additional feedback on the concepts and their definitions. Concepts would have to achieve a median score ≥ 7 from the panel with no disagreement among experts to be carried forward into the next rounds. Median scores were calculated according to the RAND/UCLA appropriateness method handbook [ 87 ] and disagreement was defined according to the inter-percentile range adjusted for symmetry [ 87 ].

In Round #2, experts were asked to rate each item on a scale of 1 to 9 (as above) based on how effective [ 91 ] the item would be in assessing health complexity with Indigenous patients. Prior to completing responses, expert panel participants were provided via a PDF as an email attachment with the group ratings of concepts from Round #1 as well as the anonymous text feedback from others [ 92 , 93 ]. An added benefit of sharing the collective responses from prior rounds was that experts could consider the subject matter in terms of how their peers made sense of it. As before, free-text fields were provided for experts to submit any additional feedback on the items and their scoring in Round #2. The inclusion of items in the next round also required median scores ≥7 with no disagreement among experts [ 87 ].

Following the completion of Round #2, the experts were invited to a two-hour online video-based group discussion to review concepts and items that were scored lower and to revisit any comments indicating uncertainty or dissension recurring within the free-text fields. This meeting was recorded to track important discussion points and make any final changes or clarifications to the wording and/or scoring of the concepts and items. Changes were made in this group discussion session if the experts indicated consensus amongst themselves, defined as no voiced opposition. The sample of experts consisted of a panel who broadly knew and worked with one another at advanced levels, presuming consensus from no voiced opposition was reasonable. Participants were able to express opposition anonymously by reaching out to the lead author directly.

Following this group session, a report was circulated to all healthcare experts highlighting the summary of suggestions and changes made. A third round of voting was conducted, focused on how effective [ 91 ] the experts considered items would be if included in such a tool, again on a scale of 1 (not at all) to 9 (completely). Experts were provided with free-text fields to enter any final feedback on the items. To be included in the final item pool, items once again required median scores ≥7 with no disagreement [ 87 ].

This study was approved by the University of Calgary's Conjoint Health Research Ethics Board, Certification #REB20–0972. All participants in the modified e-Delphi consensus process provided their consent to participate in this study.

After refinement of the framework and candidate item pool, a total of 3 concepts within the biological and social domains were eliminated as they were deemed irrelevant in the context of Indigenous patient complexity. Cognition was eliminated as it was subject to the HCP's perception of a patient's cognitive capacity and therefore deemed potentially dangerous within the context of complexity among Indigenous patients. Weight was eliminated as it only provides one aspect of an individual’s body composition. Community was eliminated as it was not inclusive of what ‘community’ includes for Indigenous peoples, which was rather captured in a domain that was added. Domains of adverse life experiences, healthcare violence, and resilience and culture were added (see Table 2 ). Items within concepts were also separated if they would be completed by the patient or the HCP, see Appendix B .

The Delphi panel was comprised of n  = 14 experts in Round #1, n  = 11 experts in Round #2, and n  = 10 experts in Round #3. The research team (AS, CB, LC) did not participate in the Delphi panel. There were seven researchers who work in various domains of Indigenous health, three researchers and policymakers in Indigenous health, and four health service providers, including one community health provider, one family physician, one radiation therapist, and one palliative care physician – all of which had extensive experience working with Indigenous patient populations. Of the panel, five members self-identified as Indigenous. A total of n  = 3 experts attended the summative group discussion session including a community health researcher, an Indigenous health social scientist, and a family physician. In Round #1, all concepts were agreed upon to be included in the Indigenous-centered patient complexity framework (see Table 3 ).

In Round #2, no items were eliminated and all voting members agreed that these items should be included in the proposed Indigenous-centered complexity framework (see Table 4 ). In the group discussion meeting, items were modified based on wording suggestions and repetitive feedback. One new item was added, which asked whether the patient was a caregiver for someone else for a total of 64 items to be voted on in Round #3. In Round #3, all 64 items met the criteria to be included in the final set of items for an Indigenous-centered PCAT (see Table 4 and Appendix B ).

Within comments in the free-text fields provided and during the group discussion, concerns were raised regarding the feasibility of a tool if it were to include all items, given their length and the lack of item reduction that took place during Rounds #2 and #3. Despite an emphasis on reduction during the group discussion and circulated report to experts, all items met the criteria to be included as part of the final tool, demonstrating their importance in assessing complexity among Indigenous patients and stirring possible need for other strategies to help reduce the burden of length.

Healthcare systems in Canada are set up in ways that tend to dismiss the colonial history and its ongoing impacts on Indigenous peoples’ health [ 94 , 95 ]. Current models of healthcare delivery seldom take into account broader determinants of health that influence Indigenous peoples and their well-being, in turn, further perpetuating health inequities [ 94 , 96 ]. Clinical frameworks can serve as tools to foster a culturally safe environment [ 97 , 98 ], and respectful dialogue [ 99 , 100 ] with Indigenous patients to promote shared decision-making [ 101 , 102 ], honour self-determination in health [ 103 , 104 ], and arrive at mutually agreed-upon management plans that advance good health while simultaneously honouring Indigenous values [ 105 , 106 ]. This study describes the development of a framework tailored for use with Indigenous peoples in clinical settings, with the intention that it may eventually serve as a resource for HCPs to engage critical theoretical domains important to complex patient care. The goal of the framework is to provide a categorization of the dimensions that are encompassed within complexity—providing an understanding of why a patient may be present as “complex” in healthcare settings. By purposefully exploring the aspects that all collectively contribute to complexity observed in patient presentations, this framework aims to help HCPs gain insight into the nature of health complexity among Indigenous patients, ultimately promoting their capacity to navigate and address the challenges that arise with health complexity. As the culmination of a multi-phased approach, findings offer a theoretical structure for key domains of complexity shaping Indigenous patient health. The present study explores the sources of complexity and their presentations among Indigenous patients.

The Truth and Reconciliation Commission (TRC) of Canada has called for HCPs to be educated on the impacts of colonialism on Indigenous health, to promote cultural safety and sensitivity in healthcare interactions [ 23 , 78 , 107 ]. HCPs today may not fully understand or perceive the historical and ongoing drivers of poor health that continue to harm Indigenous patients, presenting with an overall lack of awareness that can impact the effectiveness of healthcare delivery [ 47 , 108 ]. Service innovations that exist at the interface of Indigenous patients and HCPs, such as a patient complexity assessment framework, can be a resource to bridge gaps in understanding contributors to good health for Indigenous patients. This framework could provide comprehensive high-quality care provisions by opening possibilities for addressing social and structural determinants of health within Western biomedical spaces.

For Indigenous peoples, health is inextricably tied to the determinants of health that have arisen from colonization. As outlined in the TRC’s 94 Calls to Action [ 23 ], there are many possibilities within the health sector to support reconciliation with Indigenous peoples [ 109 ]. The findings of this study are aligned with the directions of reconciliation set out by the TRC Calls to Action [ 23 ]. By providing care that is better suited to the needs of Indigenous peoples, we can advance health equity [ 110 , 111 , 112 ] and diminish the impacts of systemic factors that negatively influence the health of Indigenous peoples. Having appropriate resources, such as an Indigenous-centered patient complexity framework, is a means to foment capacity among HCPs to better engage with Indigenous patients, as well as to acknowledge and act on the insidious role of colonization in shaping health outcomes [ 113 , 114 ]. HCPs require the awareness and competencies to effectively address complexity among Indigenous patients [ 107 , 113 , 115 , 116 ]. The patient complexity assessment framework presented here builds evidence for a potential resource aimed at enabling deeper and more meaningful clinical interactions between HCPs and Indigenous patients. It can help to advance cultural safety in clinical settings which refers to having practices rooted in a basic understanding of Indigenous peoples’ beliefs and history while also engaging a process of self-reflection to understand the power differences between the HCP and patient which can impact the process of care and healing [ 117 ]. Not only might the framework provide a lens for HCPs to better discern health determinants stemming from colonization, but it may also enhance the capacity of the HCPs to reconstruct their pathways of care to more effectively address the needs of Indigenous patients. This work supports directions to culturally safe care and leads the way in decolonizing approaches to care.

Strengths and limitations

The framework presented offers HCPs an opportunity to understand the nature and specific origins of the realities that continue to shape the health of Indigenous patients. This knowledge presents an actionable opportunity to shift HCPs’ tendencies to locate blame within the patient for health outcomes to instead locate cause within structural and systemic dynamics arising from inequity as an outcome of colonization. The approach taken to develop this framework is critical and rigorous in how it engages with many disciplines of knowledge, centering Indigenous knowledge throughout the process. The framework holds significant theoretical rigour that provides a strong foundation of knowledge for informing any future PCATs given its multi-phased development and continuous refinement. Furthermore, items developed are highly validated derived from published measures, informed by the lived experiences of Indigenous patients, contextualized to reflect the social realities that shape the health of Indigenous peoples, and reviewed by healthcare experts within the field of Indigenous health.

As noted in the results section, it is limited by the number of items selected to be included in the proposed Indigenous-centered PCAT, risking that such a tool is burdensome to employ in regular clinical practice. Future advancements of this work will employ psychometric methods and experiment with novel delivery approaches in order to reduce the burden of eliciting items and to ensure the tool’s feasibility for use in clinical settings. Considerations of health literacy will also be undertaken in the refinement of the items as many of them may not be easily understood by patients without prior knowledge and/or clear definitions. Within the item pool, there are no items that directly ask about the role of discrimination, racism, stereotyping, and mistrust in perpetuating complexity within the Indigenous patient. While important concepts, the nature of the tool’s employment causes concern to be cautious in alienating the HCPs and creating context that causes discomfort for both the patient and HCP. Likewise, inquiries about systemic inequities may serve to paralyze HCPs, implicitly suggesting that if complexity is caused by structural and institutional factors, HCPs are then incapable of addressing complexity within the Indigenous patient. This is a limitation of the nature of such tools, and future advancements of this research will explore avenues to create safety for such disclosures. A key question remains whether complexity, which is an unobservable construct, exists as a unitary construct or if it represents a collection of correlated facets without a common core [ 118 ]. Future analyses will explore the presence of any dimensions within the framework that reflect a global, underlying construct of complexity [ 118 ]. Another limitation is that both the Indigenous patients who contributed to phase two of this work and the HCPs, policymakers, and researchers who participated in phase four of this work represent the regional area of Alberta, Canada. Future advancements of this work will explore the applicability of such a PCAT outside of this region.

Future steps

While we have presented a framework of Indigenous patient complexity, future steps of this work are aligned with addressing the limitations of this study and will advance the goal of having a PCAT for use in clinical settings. A subsequent PCAT developed from the framework presented here could be used in practice as an initial screening tool to assess new Indigenous patients for complexity or as a longitudinal tool that may be employed across many points throughout the patients’ healthcare journey providing opportunity for comparative analyses to determine changes in complexity. Pilot data will be collected for a factor analysis in a bid to reduce the number of items included in such an Indigenous-centered PCAT [ 119 , 120 , 121 ]. Using the framework presented as a model of data, we will test hypotheses regarding the number of factors, the correlation between those factors, and the relationship of the items to the factors [ 119 , 120 , 121 ]. Factors are larger than items and concepts to allow for refining and rendering a more precise tool. Pilot data will also help to inform the best use of the tool, ensuring Indigenous patient needs are being met.

Through the critical application of the integrated concepts presented within the framework, we put forth a set of recommendations to improve clinical care interactions between HCPs and Indigenous patients, advance cultural safety in healthcare settings, and hold space for Indigenous epistemologies and experiences within social and healthcare structures that continue to systemically disadvantage Indigenous peoples. The framework presented here offers an evolving body of knowledge to enhance capacity to inform HCPs, systems, and policies on how to facilitate better health outcomes with Indigenous peoples. Future research will work to reduce the number of items in such a tool to advance usability within clinical settings.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due privacy considerations but are available from the corresponding author on reasonable request.

Abbreviations

Healthcare providers

Patient complexity assessment tools

Interquartile range

Truth and Reconciliation Commission

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Department of Family Medicine, Cumming School of Medicine, University of Calgary, 3330 Hospital Dr NW, Calgary, AB, T2N 4N1, Canada

Anika Sehgal, Rita Henderson & Lynden (Lindsay) Crowshoe

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Sehgal, A., Henderson, R., Murry, A. et al. Advancing health equity for Indigenous peoples in Canada: development of a patient complexity assessment framework. BMC Prim. Care 25 , 144 (2024). https://doi.org/10.1186/s12875-024-02362-z

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Indigenous Studies: Indigenous Research Methods

"To reclaim research is to take control of our lives and our lands to benefit us in issues of importance for our self-determination. It is to liberate and emancipate by decolonisation and privileging the voices, experiences and lives of Aboriginal people and Aboriginal lands so that research frameworks are reflective of this. To reframe research is to focus on matters of importance as we identify these. It is to respect our ways and honour our rights and social mores as essential processes, through which we live, act and learn."

Selected eBooks

Key Principles

From: Russell-Mundine, Gabrielle. “ Reflexivity in Indigenous Research: Reframing and Decolonising Research? ” Journal of Hospitality and Tourism Management , vol. 19, no. 1, 2012, pp. 85–90.

Indigenous researchers have identified some of the key principles that research by, or with, Indigenous peoples should incorporate. That is, such research should:

• empower Indigenous peoples
• aim to decolonise and reframe research
• be critical and liberationist recognising social, political and historical contexts
• have political integrity
• privilege Indigenous voices
• recognise and represent the diversity of cultures, voices and experiences
• allow Indigenous peoples to set the agenda
• focus on matters of importance to Indigenous peoples
• use core structures of Aboriginal world-views
• integrate cultural protocols, social mores and behaviours into methodology
• integrate Indigenous ways of knowledge creation.

Key Questions for the Indigenous Researcher

From: Tuhiwai Smith, Linda, " Kaupapa Maori Research ." In Battiste, Marie Ann. Reclaiming Indigenous Voice and Vision . UBC Press, 2000. 

• What research do we want done?
• Whom is it for?
• What difference will it make?
• Who will carry it out?
• How do we want the research done?
• How will we know it is worthwhile?
• Who will own the research?
• Who will benefit?

Decolonizing Knowledge

2013 conversation with Professor Linda Tuhiwai Smith, author of Decolonizing Methodologies: Research and Indigenous Peoples .

Selected Articles

• "Indigenous Epistemologies and Education: Self-Determination, Anthropology, and Human Rights." Special issue: Anthropology & Education Quarterly, Vol. 36, No. 1 (2005).
• Datta, Ranjan. “Decolonizing Both Researcher and Research and Its Effectiveness in Indigenous Research.” Research Ethics Review, vol. 14, no. 2, 2018, pp. 1–24.
• Drawson, Alexandra S, et al. “Indigenous Research Methods: A Systematic Review.” International Indigenous Policy Journal, vol. 8, no. 2, 2017.
• Thambinathan, Vivetha, and Kinsella, Elizabeth Anne. “Decolonizing Methodologies in Qualitative Research: Creating Spaces for Transformative Praxis.” International Journal of Qualitative Methods, vol. 20, 2021, pp. 1-9.

"Indigenous peoples are used to being studied by outsiders; indeed, many of the basic disciplines of knowledge are implicated in studying the Other and creating expert knowledge. More recently, however, indigenous researchers have been active in seeking ways to disrupt the “history of exploitation, suspicion, misunderstanding, and prejudice” of indigenous peoples in order to develop methodologies and approaches to research that privilege indigenous knowledges, voices, experiences, reflections, and analyses of their social, material, and spiritual conditions. . .

Indigenist research also includes a critique of the “rules of practice regarding research, the way research projects are funded, and the development of strategies that address community concerns about the assumptions, ethics, purposes, procedures, and outcomes of research. These strategies often have led to innovative research questions, new methodologies, new research relationships, deep analyses of the researcher in context, and analyses, interpretations, and the making of meanings that have been enriched by indigenous concepts and language. . .

Research, like schooling, once the tool of colonization and oppression, is very gradually coming to be seen as a potential means to reclaim languages, histories, and knowledge, to find solutions to the negative impacts of colonialism and to give voice to an alternative way of knowing and of being."

Additional Resources

• Toolbox of Research Principles in an Aboriginal Context: Ethics, Respect, Fairness, Reciprocity, Collaboration and Culture
• Indigenous Knowledges Research (University of Melbourne Library)
• Indigenous Research & Knowledges in North America (University of Colorado Libraries)
• Indigenous Research Methodologies (University of British Columbia)

Sources for quotes:

 Karen Martin, "Ways of knowing, ways of being, and ways of doing: Developing a theoretical framework and methods for Indigenous re-search and indigenist research." Australian Institute of Aboriginal and Torres Strait Islander Studies conference, The Power of Knowledge and the Resonance of Tradition, 2001. Cited in Karina L. Walters, et al., ""Indigenist" Collaborative Research Efforts in Native American Communities" In Stiffman, Arlene Rubin. The Field Research Survival Guide . Oxford University Press, 2009.

Tuhiwai Smith, Linda." On tricky ground: Researching the Native in the age of uncertainty." In Luttrell, Wendy. Qualitative Educational Research: Readings in Reflexive Methodology and Transformative Practice . Routledge, 2010.

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Tai Koester: Building on Undergraduate Training to Lead Research in Political Ecology and Indigenous Geographies

I am a Masters student in the School of Geography, Development and Environment at the University of Arizona working with Dr. Andrew Curley. My research draws from political ecology and Indigenous geographies to study environmental politics in the US West and examines how the energy transition is shaping the political and economic futures of Native Nations. My Masters research is focused on the Northern Cheyenne Tribe, a federally-recognized tribe, whose reservation is located in southeastern Montana. This is coal country, part of the Powder River Basin, the most productive coalfields in the US. The Northern Cheyenne Reservation is surrounded by large coal strip mines on three sides and is 20 miles from the Colstrip Generating Station, once one of the largest coal-fired power stations in the US. In this remote region, coal extraction represents a reliable source of income for tribal members. However, coal’s future is uncertain, and the Colstrip Generating Station has closed half of its units that produce electricity. Against this backdrop, the Tribe is exploring options for developing its own tribally-owned utility based on renewable energy production, which has the potential to reduce the Tribe’s dependence on external electricity providers (e.g. costs for heating in winter are extremely high) and could employ tribal members.  

My research is grounded in qualitative methods involving interviews with tribal government officials, economic development experts, coal miners and plant operators, and renewable energy developers, among others. These interviews are supplemented by participant observation at regional energy events and conferences focused on the energy transition. My preliminary findings suggest that the energy transition seems likely to reinforce existing inequalities. The same power companies that own coal infrastructure are developing renewables that will compete with the Tribe’s own ambitions. Furthermore, existing paternalistic bureaucracy that structures the relationship tribal nations have with the federal government presents roadblocks that make it very difficult to pursue economic development in general. For example, the Northern Cheyenne must negotiate with the Bureau of Indian Affairs, a federal agency, in addition to any energy developers before constructing solar on tribal trust lands, while private energy developers operating off-reservation face no comparable obstacles.   

My research at Arizona builds off the research and experiences I had as an undergraduate in the Department of Geography at CU-Boulder. Under the guidance of Dr. Joe Bryan, I completed my honors thesis on the role of US public lands and historical mapping in the dispossession of Indigenous peoples, which together have gone on to shape the terrain upon which present-day Indigenous campaigns to protect southeast Utah’s Bears Ears region must struggle. This area was made famous in part by the Trump administration’s rollback of federal protections, centering on its status as a National Monument. Bears Ears, like all public lands, was mapped and managed to facilitate extraction and settlement at the direct expense of Indigenous people and the land itself, putting Indigenous claims of authority over the landscape at a significant disadvantage to the those made by white settlers and miners.  

Moving forward, I hope to continue to pursue engaged research that examines the tangled legacies of colonialism and resource extraction on Native Nations in the US. I owe much of where I am to the faculty and peers I had at CU-Boulder.  

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