Skip to main content
Top
Published in: BMC Medical Research Methodology 1/2020

Open Access 01-12-2020 | Human Papillomavirus | Research article

Engaging with Indigenous Australian communities for a human papilloma virus and oropharyngeal cancer project; use of the CONSIDER statement

Authors: Joanne Hedges, Gail Garvey, Zell Dodd, Warren Miller, Terry Dunbar, Cathy Leane, Amanda Mitchell, Isaac Hill, Lisa Jamieson

Published in: BMC Medical Research Methodology | Issue 1/2020

Login to get access

Abstract

Background

The prevalence of oral HPV infection and HPV-related oropharyngeal squamous cell carcinoma (OPSCC) among Indigenous Australians is unknown. This paper outlines the engagement, consultation and recruitment strategies for a study involving investigation of HPV and OPSCC among Indigenous South Australians, based on the consolidated criteria for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement.

Methods

Initial consultations with all interested Aboriginal Community Controlled Health Organisations (ACCHOs) were done throughout 2014 and 2015. This resulted in a funding application submitted that reflected Indigenous community views and inputs in study design and methodology, and which included nine Indigenous investigators. Once funding was received, community consultation was again undertaken, with six ACCHOs providing structures, strategies and recommendations for how recruitment for participants taking part in the study should be undertaken. Staff were hired (n = 6), with non-Indigenous staff (n = 3) undertaking extensive cultural competency training. An Indigenous Reference Group was established to provide oversight and cultural guidance. Recruitment of Indigenous participants by trained field officers occurred between Feb 2018 and Dec 2018, with n = 1011 recruited. Qualitative records summarising research staff contact with ACCHOs and participants were documented. These records, together with field trip notes, key ACCHO stakeholder reflections and research staff comments, were reviewed to summarise the culturally sensitive strategies that appeared to work most successfully to facilitate ACCHO and participant buy-in.

Results

Findings were documented against the CONSIDER statement’s research reporting framework of governance: relationships, prioritization, methodologies, participation, capacity, analysis and findings, and dissemination. The apparent success of the community engagement processes were then conceptualised into five domains: (1) engaging with ACCHOs as equal partners very early in the research process; (2) having an Indigenous Reference Group; (3) ACCHOs actively promoting the study; (4) having a flexible agenda responsive to broader environment demands and; (5) including Indigenous capacity building.

Conclusions

Consultation and engagement with all sectors of the Indigenous community are essential in any research, especially a project involving HPV and OPSCC. Enabling local Indigenous staff to provide cultural guidance throughout the research process is helpful. Research that is culturally respectful and in partnership with Indigenous groups can be embraced when the research is collaborative and has clear translational benefits. The CONSIDER statement is a useful checklist against which to assess Indigenous health research processes. In future, the findings may be useful to yield important Aboriginal population estimates for both oral HPV infection and OPSCC. This may serve to convince funding bodies to provide health promotion personnel in the field of oral health, specifically OPSCC, in ACCHOs.
Literature
1.
go back to reference National Health and Medical Research Council. Ethical conduct in research with aboriginal and Torres Strait islander people and communities. Canberra: NHMRC; 2018. National Health and Medical Research Council. Ethical conduct in research with aboriginal and Torres Strait islander people and communities. Canberra: NHMRC; 2018.
2.
go back to reference Australian Institute of Aboriginal and Torres Strait Islander Studies. Guidelines for ethical research in Australian indigenous studies. Canberra: AIATSIS; 2012. Australian Institute of Aboriginal and Torres Strait Islander Studies. Guidelines for ethical research in Australian indigenous studies. Canberra: AIATSIS; 2012.
3.
go back to reference South Australian Health and Medical Research Institute. South Australian aboriginal Health Research accord. Adelaide: SAHMRI; 2014. South Australian Health and Medical Research Institute. South Australian aboriginal Health Research accord. Adelaide: SAHMRI; 2014.
4.
go back to reference Huria T, Palmer SC, Pitama S, Beckert L, Lacey C, Ewen S, et al. Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement. BMC Med Res Methodol. 2019;19:173.CrossRef Huria T, Palmer SC, Pitama S, Beckert L, Lacey C, Ewen S, et al. Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement. BMC Med Res Methodol. 2019;19:173.CrossRef
6.
go back to reference Marur S, D’Souza G, Westra WH, Forastiere AA. HPV-associated head and neck cancer: cancer epidemic. Lancet Oncol. 2010;11:781–9.CrossRef Marur S, D’Souza G, Westra WH, Forastiere AA. HPV-associated head and neck cancer: cancer epidemic. Lancet Oncol. 2010;11:781–9.CrossRef
7.
go back to reference Hong A, Lee CS, Jones D, Veillard AS, Zhang M, Zhang X, et al. Rising prevalence of human papillomavirus–related oropharyngeal cancer in Australia over the last 2 decades. Head Neck. 2016;38:743–50.CrossRef Hong A, Lee CS, Jones D, Veillard AS, Zhang M, Zhang X, et al. Rising prevalence of human papillomavirus–related oropharyngeal cancer in Australia over the last 2 decades. Head Neck. 2016;38:743–50.CrossRef
8.
go back to reference Banham D, Roder D, Keefe D, Farshid G, Eckert M, Cargo M, et al. CanDAD aboriginal community reference group and other CanDAD investigators. Disparities in cancer stage at diagnosis and survival of aboriginal and non-aboriginal south Australians. Cancer Epidemiol. 2017;48:131–9.CrossRef Banham D, Roder D, Keefe D, Farshid G, Eckert M, Cargo M, et al. CanDAD aboriginal community reference group and other CanDAD investigators. Disparities in cancer stage at diagnosis and survival of aboriginal and non-aboriginal south Australians. Cancer Epidemiol. 2017;48:131–9.CrossRef
9.
go back to reference Jamieson L, Garvey G, Hedges J, Mitchell A, Dunbar T, Leane C, et al. Human papillomavirus and oropharyngeal cancer among indigenous Australians: protocol for a prevalence study of Oral-related human papillomavirus and cost-effectiveness of prevention. JMIR Res Protoc. 2018;7:e10503.CrossRef Jamieson L, Garvey G, Hedges J, Mitchell A, Dunbar T, Leane C, et al. Human papillomavirus and oropharyngeal cancer among indigenous Australians: protocol for a prevalence study of Oral-related human papillomavirus and cost-effectiveness of prevention. JMIR Res Protoc. 2018;7:e10503.CrossRef
10.
go back to reference Butcher A. Linguistic aspects of Australian aboriginal English. Clin Linguist Phon. 2008;22:625–42.CrossRef Butcher A. Linguistic aspects of Australian aboriginal English. Clin Linguist Phon. 2008;22:625–42.CrossRef
11.
go back to reference Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol. 2014;14:42.CrossRef Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol. 2014;14:42.CrossRef
12.
go back to reference Australian Human Rights Commission. Self-determination and Australia’s first peoples. Sydney: Australian Human Rights Commission; 2018. Australian Human Rights Commission. Self-determination and Australia’s first peoples. Sydney: Australian Human Rights Commission; 2018.
13.
go back to reference Dyke T, Anderson WP. A history of health and medical research in Australia. Med J Aust. 2014;201:S33–6.CrossRef Dyke T, Anderson WP. A history of health and medical research in Australia. Med J Aust. 2014;201:S33–6.CrossRef
Metadata
Title
Engaging with Indigenous Australian communities for a human papilloma virus and oropharyngeal cancer project; use of the CONSIDER statement
Authors
Joanne Hedges
Gail Garvey
Zell Dodd
Warren Miller
Terry Dunbar
Cathy Leane
Amanda Mitchell
Isaac Hill
Lisa Jamieson
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2020
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/s12874-020-00981-5

Other articles of this Issue 1/2020

BMC Medical Research Methodology 1/2020 Go to the issue