Collective and negotiated design for a clinical trial addressing smoking cessation supports for Aboriginal and Torres Strait Islander mothers in NSW, SA and Qld – developing a pilot study
Michelle Bovill A D , Yael Bar-Zeev A , Maree Gruppetta B , Peter O’Mara B , Brett Cowling C and Gillian S. Gould A
+ Author Affiliations
- Author Affiliations
A Centre for Brain and Mental Health Research, School of Medicine and Public Health, The University of Newcastle, Callaghan, PO Box 833, Newcastle, NSW 2300, Australia.
B Wollotuka Institute, Birabahn Building, The University of Newcastle, University Drive, Callaghan, NSW 2308, Australia.
C Biripi Aboriginal Corporation Medical Centre, PO Box 1083, Taree, NSW 2430, Australia.
D Corresponding author. Email: michelle.bovill@newcastle.edu.au
Australian Journal of Primary Health 23(6) 497-503 https://doi.org/10.1071/PY16140
Submitted: 27 October 2016 Accepted: 16 January 2017 Published: 31 March 2017
Abstract
Tobacco smoking leads to one in five deaths of Aboriginal Australians and accounts for 17% of the reversible health gap. One in two Aboriginal women are reported to smoke during pregnancy, with no effective strategies currently available for health practitioners to utilise for supporting Aboriginal women. Aboriginal community participation in primary health research is crucial to implementing ethical research, with a clear benefit to the people and communities involved. However, currently there is little evidence on how Aboriginal programs and interventions are being developed in partnership with Aboriginal people and communities. ‘Indigenous Counselling and Nicotine (ICAN) QUIT in Pregnancy’ aims to address the prevalence of smoking during pregnancy by enhancing health providers’ training in offering evidence-based smoking cessation care to Aboriginal mothers during pregnancy. This paper outlines the participatory research approach adopted for the developmental phase of the ‘ICAN QUIT in Pregnancy’ project developed in partnership with two Aboriginal Community-Controlled Health Services in NSW, and negotiation processes undertaken to implement a pilot intervention across NSW, SA and Qld.
References
Adams E, Tongs J (2011) Winnunga Nimmityjah Aboriginal Health Service – starting a perinatal and infant mental health service at Winnunga Nimmityjah. Australasian Psychiatry 19, S20–S22.| Winnunga Nimmityjah Aboriginal Health Service – starting a perinatal and infant mental health service at Winnunga Nimmityjah.Crossref | GoogleScholarGoogle Scholar |
AH&MRC Ethics Committee (2013) AH&MRC guidelines for research into Aboriginal health: key principles. Available at http://www.ahmrc.org.au/media/resources/ethics/ethics-application-resources/271-ah-mrc-guidelines-for-research-into-aboriginal-health-key-principles-1/file.html [Verified 20 June 2016]
Arnold L, Hoy W, Wang Z (2016) Low birthweight increases risk for cardiovascular disease hospitalisations in a remote Indigenous Australian community – a prospective cohort study. Australian and New Zealand Journal of Public Health 40, S102–S106.
| Low birthweight increases risk for cardiovascular disease hospitalisations in a remote Indigenous Australian community – a prospective cohort study.Crossref | GoogleScholarGoogle Scholar |
Australian Government (2013) National Aboriginal and Torres Strait Islander Health Plan 2013–2023. Commonwealth of Australia. Available at http://www.health.gov.au/internet/main/publishing.nsf/content/B92E980680486C3BCA257BF0001BAF01/$File/health-plan.pdf [Verified 20 June 2016]
Australian Institute of Health and Welfare (2015) Australia’s mothers and babies 2013: in brief. Perinatal Statistics Series number 31. Australian Institute of Health and Welfare, Canberra. Available at http://www.aihw.gov.au/publication-detail/?id=60129553770 [Verified 15 February 2017]
Bovill M, Donovan S (2016) Indigenous Counselling and Nicotine (ICAN) Quit in Pregnancy Intervention. In ‘AH&MRC Tackling Tobacco and Chronic Conditions Conference’, 3 May 2016, Sydney, NSW, Australia.
Carson K (2014) Indigenous smoking program cuts risk widening the gap. The Conversation. Available at http://theconversation.com/indigenous-smoking-program-cuts-risk-widening-the-gap-29051 [Verified 1 August 2016]
Cochran PA, Marshall CA, Garcia-Downing C, Kendall E, Cook D, McCubbin L, Gover RM (2008) Indigenous ways of knowing: implications for participatory research and community. American Journal of Public Health 98, 22–27.
| Indigenous ways of knowing: implications for participatory research and community.Crossref | GoogleScholarGoogle Scholar |
Commonwealth of Australia (2015) Closing the gap: Prime Minister’s Report. Available at https://www.dpmc.gov.au/sites/default/files/publications/Closing_the_Gap_2015_Report.pdf [Verified 10 August 2016]
Couzos S, Nicholson AK, Hunt JM, Davey ME, May JK, Bennet PT, Westphal DW, Thomas DP (2015) Talking about the smokes: a large-scale, community-based participatory research project. The Medical Journal of Australia 202, 13–19.
| Talking about the smokes: a large-scale, community-based participatory research project.Crossref | GoogleScholarGoogle Scholar |
Dunbar T, Scrimgeour M (2006) Ethics in Indigenous research – connecting with community. Journal of Bioethical Inquiry 3, 179–185.
| Ethics in Indigenous research – connecting with community.Crossref | GoogleScholarGoogle Scholar |
Durey A, McEvoy S, Swift-Otero V, Taylor K, Katzenellenbogen J, Bessarab D (2016) Improving healthcare for Aboriginal Australians through effective engagement between community and health services. BMC Health Services Research 16, 224
| Improving healthcare for Aboriginal Australians through effective engagement between community and health services.Crossref | GoogleScholarGoogle Scholar |
Eades SJ, Chamberlain C (2015) Seeking a comprehensive approach to tobacco control for Aboriginal and Torres Strait Islander people. The Medical Journal of Australia 202, 511–512.
| Seeking a comprehensive approach to tobacco control for Aboriginal and Torres Strait Islander people.Crossref | GoogleScholarGoogle Scholar |
Eades SJ, Read AW (1999) The Bibbulung Gnarneep Project: practical implementation of guidelines on ethics in indigenous health research. The Medical Journal of Australia 170, 433–436.
Eades SJ, Stanley FJ (2013) Improving the health of First Nations children in Australia. The Medical Journal of Australia 199, 12–13.
| Improving the health of First Nations children in Australia.Crossref | GoogleScholarGoogle Scholar |
Eades SJ, Sanson-Fisher RW, Wenitong M, Panaretto K, D’Este C, Gilligan C, Stewart J (2012) An intensive smoking intervention for pregnant Aboriginal and Torres Strait Islander women: a randomised controlled trial. The Medical Journal of Australia 197, 42–46.
| An intensive smoking intervention for pregnant Aboriginal and Torres Strait Islander women: a randomised controlled trial.Crossref | GoogleScholarGoogle Scholar |
Fletcher G, Fredericks B, Adams K, Finlay S, Andy S, Briggs L, Hall R (2011) Having a yarn about smoking: using action research to develop a ‘no smoking’ policy within an Aboriginal Health Organisation. Health Policy 103, 92–97.
| Having a yarn about smoking: using action research to develop a ‘no smoking’ policy within an Aboriginal Health Organisation.Crossref | GoogleScholarGoogle Scholar |
Fredericks BL, Adams K, Finlay SM, Fletcher G, Andy S, Briggs L (2011) Engaging the practice of yarning in Action Research. Action Learning and Action Research Journal 17, 7–19.
Gilligan C, Sanson-Fisher R, Eades S, D’Este C (2007) Antenatal smoking in vulnerable population groups: an area of need. Journal of Obstetrics & Gynaecology 27, 664–671.
| Antenatal smoking in vulnerable population groups: an area of need.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD2snntlyjtg%3D%3D&md5=da38b8b196605db9301d6136d8e79902CAS |
Gilligan C, Sanson-Fisher RW, D’Este C, Eades S, Wenitong M (2009) Knowledge and attitudes regarding smoking during pregnancy among Aboriginal and Torres Strait Islander women. The Medical Journal of Australia 190, 557–561.
Gilligan C, Sanson-Fisher R, Eades S, Wenitong M, Panaretto K, D’Este C (2010) Assessing the accuracy of self-reported smoking status and impact of passive smoke exposure among pregnant Aboriginal and Torres Strait Islander women using cotinine biochemical validation. Drug and Alcohol Review 29, 35–40.
| Assessing the accuracy of self-reported smoking status and impact of passive smoke exposure among pregnant Aboriginal and Torres Strait Islander women using cotinine biochemical validation.Crossref | GoogleScholarGoogle Scholar |
Gould GS, Munn J, Avuri S, Hoff S, Cadet-James Y, McEwen A, Clough AR (2013a) ‘Nobody smokes in the house if there’s a new baby in it’: Aboriginal perspectives on tobacco smoking in pregnancy and in the household in regional NSW Australia. Women and Birth; Journal of the Australian College of Midwives 26, 246–253.
| ‘Nobody smokes in the house if there’s a new baby in it’: Aboriginal perspectives on tobacco smoking in pregnancy and in the household in regional NSW Australia.Crossref | GoogleScholarGoogle Scholar |
Gould GS, Munn J, Watters T, McEwen A, Clough AR (2013b) Knowledge and views about maternal tobacco smoking and barriers for cessation in Aboriginal and Torres Strait Islanders: a systematic review and meta-ethnography. Nicotine & Tobacco Research 15, 863–874.
| Knowledge and views about maternal tobacco smoking and barriers for cessation in Aboriginal and Torres Strait Islanders: a systematic review and meta-ethnography.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC3sXmt1Snu7k%3D&md5=ef06bdc51b3278aec6bfd19f8a953c1fCAS |
Gould GS, Watt K, Stevenson L, McEwen A, Cadet-James Y, Clough AR (2014) Developing anti-tobacco messages for Australian Aboriginal and Torres Strait Islander peoples: evidence from a national cross-sectional survey. BMC Public Health 14, 250–262.
| Developing anti-tobacco messages for Australian Aboriginal and Torres Strait Islander peoples: evidence from a national cross-sectional survey.Crossref | GoogleScholarGoogle Scholar |
Gould GS, Bittoun R, Clarke MJ (2015) A pragmatic guide for smoking cessation counselling and the initiation of nicotine replacement therapy for pregnant Aboriginal and Torres Strait Islander smokers. Journal of Smoking Cessation 10, 96–105.
| A pragmatic guide for smoking cessation counselling and the initiation of nicotine replacement therapy for pregnant Aboriginal and Torres Strait Islander smokers.Crossref | GoogleScholarGoogle Scholar |
Gould GS, Stevenson L, Cadet-James Y, Clough AR (2016) Cultural challenges reported when developing anti-tobacco messages for Indigenous Australians. Health Promotion International 2016, daw072
| Cultural challenges reported when developing anti-tobacco messages for Indigenous Australians.Crossref | GoogleScholarGoogle Scholar |
Gwynn J, Lock M, Turner N, Dennison R, Coleman C, Kelly B, Wiggers J (2015) Aboriginal and Torres Strait Islander community governance of health research: turning principles into practice. Australian Journal of Rural Health 23, 235–242.
| Aboriginal and Torres Strait Islander community governance of health research: turning principles into practice.Crossref | GoogleScholarGoogle Scholar |
Hearn S, Nancarrow H, Rose M, Massi L, Wise M, Conigrave K, Barnes I, Bauman A (2011) Evaluating NSW SmokeCheck: a culturally specific smoking cessation training program for health professionals working in Aboriginal health. Health Promotion Journal of Australia 22, 189–195.
| Evaluating NSW SmokeCheck: a culturally specific smoking cessation training program for health professionals working in Aboriginal health.Crossref | GoogleScholarGoogle Scholar |
Holmes W, Stewart P, Garrow A, Anderson I, Thorpe L (2002) Researching Aboriginal health: experience from a study of urban young people’s health and well-being. Social Science & Medicine 54, 1267–1279.
| Researching Aboriginal health: experience from a study of urban young people’s health and well-being.Crossref | GoogleScholarGoogle Scholar |
Ivers RG (2004) An evidence-based approach to planning tobacco interventions for Aboriginal people. Drug and Alcohol Review 23, 5–9.
| An evidence-based approach to planning tobacco interventions for Aboriginal people.Crossref | GoogleScholarGoogle Scholar |
Jamieson LM, Paradies YC, Eades S, Chong A, Maple-Brown L, Morris P, Bailie R, Cass A, Roberts-Thomson K, Brown A (2012) Ten principles relevant to health research among Indigenous Australian populations. The Medical Journal of Australia 197, 16–18.
| Ten principles relevant to health research among Indigenous Australian populations.Crossref | GoogleScholarGoogle Scholar |
Jongen C, McCalman J, Bainbridge R, Tsey K (2014) Aboriginal and Torres Strait Islander maternal and child health and wellbeing: a systematic search of programs and services in Australian primary health care settings. BMC Pregnancy and Childbirth 14, 251
| Aboriginal and Torres Strait Islander maternal and child health and wellbeing: a systematic search of programs and services in Australian primary health care settings.Crossref | GoogleScholarGoogle Scholar |
Kendall E, Barnett L (2015) Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy. Ethnicity & Health 20, 437–452.
| Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy.Crossref | GoogleScholarGoogle Scholar |
Lin I, Green C, Bessarab D (2016) ‘Yarn with me’: applying clinical yarning to improve clinician–patient communication in Aboriginal health care. Australian Journal of Primary Health 22, 377–382.
| ‘Yarn with me’: applying clinical yarning to improve clinician–patient communication in Aboriginal health care.Crossref | GoogleScholarGoogle Scholar |
Marley JV, Kitaura T, Atkinson D, Metcalf S, Maguire GP, Gray D (2014) Clinical trials in a remote Aboriginal setting: lessons from the BOABS smoking cessation study. BMC Public Health 14, 579
| Clinical trials in a remote Aboriginal setting: lessons from the BOABS smoking cessation study.Crossref | GoogleScholarGoogle Scholar |
Massey PD, Miller A, Saggers S, Durrheim DN, Speare R, Taylor K, Pearce G, Odo T, Broome J, Judd J, Kelly J, Blackley M, Clough A (2011) Australian Aboriginal and Torres Strait Islander communities and the development of pandemic influenza containment strategies: community voices and community control. Health Policy 103, 184–190.
| Australian Aboriginal and Torres Strait Islander communities and the development of pandemic influenza containment strategies: community voices and community control.Crossref | GoogleScholarGoogle Scholar |
Mc Loughlin F, Hadgraft NT, Atkinson D, Marley JV (2014) Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders. BMC Health Services Research 14, 517
| Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders.Crossref | GoogleScholarGoogle Scholar |
McCalman J, Bainbridge R, Percival N, Tsey K (2016) The effectiveness of implementation in Indigenous Australian healthcare: an overview of literature reviews. International Journal for Equity in Health 15, 47
| The effectiveness of implementation in Indigenous Australian healthcare: an overview of literature reviews.Crossref | GoogleScholarGoogle Scholar |
Minichiello A, Lefkowitz ARF, Firestone M, Smylie JK, Schwartz R (2016) Effective strategies to reduce commercial tobacco use in Indigenous communities globally: a systematic review. BMC Public Health 16, 21
| Effective strategies to reduce commercial tobacco use in Indigenous communities globally: a systematic review.Crossref | GoogleScholarGoogle Scholar |
Mundine K, Edwards L, Williams JDB (2001) Why an Aboriginal ethical perspective is necessary for research into Aboriginal health. In ‘From the Ground up – a Conference on Aboriginal Health in the 63rd Millennium’, 1–4 May 2006, Sydney, NSW, Australia. (AH&MRC) Available at http://www.ahmrc.org.au/media/resources/ethics/ethics-background-resources/278-aboriginal-ethical-perspective-for-researchers/file.html [Verified 15 February 2017]
NHMRC (2003) Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (1864962135). Available at https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/ e52.pdf [Verified 30 January 2016]
NHMRC (2005) Keeping research on track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics. (Australian Government: Canberra, ACT, Australia) Available at https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e65.pdf [Verified 5 January 2016]
NHMRC (2010) NHMRC Road Map ll: a strategic framework for improving the health of Aboriginal and Torres Strait Islander people through research. (Australian Government Canberra, ACT, Australia) Available at https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/r47.pdf [Verified 5 January 2016]
O’Donahoo FJ, Ross KE (2015) Principles relevant to health research among Indigenous communities. International Journal of Environmental Research and Public Health 12, 5304–5309.
| Principles relevant to health research among Indigenous communities.Crossref | GoogleScholarGoogle Scholar |
Panaretto KS, Mitchell MR, Anderson L, Gilligan C, Buettner P, Larkins SL, Eades S (2009) Tobacco use and measuring nicotine dependence among urban Indigenous pregnant women. The Medical Journal of Australia 191, 554–557.
Passey ME, Sanson-Fisher RW (2015) Provision of antenatal smoking cessation support: a survey with pregnant Aboriginal and Torres Strait Islander women. Nicotine & Tobacco Research 17, 746–749.
| Provision of antenatal smoking cessation support: a survey with pregnant Aboriginal and Torres Strait Islander women.Crossref | GoogleScholarGoogle Scholar |
Passey ME, Bryant J, Hall AE, Sanson-Fisher RW (2013) How will we close the gap in smoking rates for pregnant Indigenous women? The Medical Journal of Australia 199, 39–41.
| How will we close the gap in smoking rates for pregnant Indigenous women?Crossref | GoogleScholarGoogle Scholar |
Patten CA (2012) Tobacco cessation intervention during pregnancy among Alaska Native women. Journal of Cancer Education 27, 86–90.
| Tobacco cessation intervention during pregnancy among Alaska Native women.Crossref | GoogleScholarGoogle Scholar |
Rae K, Weatherall L, Hollebone K, Apen K, McLean M, Blackwell C, Eades S, Boulton J, Lumbers E, Smith R (2013) Developing research in partnership with Aboriginal communities – strategies for improving recruitment and retention. Rural and Remote Health 13, 2255
Reeve C, Humphreys J, Wakerman J, Carroll V, Carter M, O’Brien T, Erlank C, Mansour R, Smith B (2015) Community participation in health service reform: the development of an innovative remote Aboriginal primary health-care service. Australian Journal of Primary Health 21, 409–416.
| Community participation in health service reform: the development of an innovative remote Aboriginal primary health-care service.Crossref | GoogleScholarGoogle Scholar |
Singer J, Bennett-Levy J, Rotumah D (2015) ‘You didn’t just consult community, you involved us’: transformation of a ‘top-down’ Aboriginal mental health project into a ‘bottom-up’ community-driven process. Australasian Psychiatry 23, 614–619.
| ‘You didn’t just consult community, you involved us’: transformation of a ‘top-down’ Aboriginal mental health project into a ‘bottom-up’ community-driven process.Crossref | GoogleScholarGoogle Scholar |
Snijder M, Shakeshaft A, Wagemakers A, Stephens A, Calabria B (2015) A systematic review of studies evaluating Australian indigenous community development projects: the extent of community participation, their methodological quality and their outcomes. BMC Public Health 15, 1154
| A systematic review of studies evaluating Australian indigenous community development projects: the extent of community participation, their methodological quality and their outcomes.Crossref | GoogleScholarGoogle Scholar |
Vos T, Barker B, Begg S, Stanley L, Lopez A (2009) Burden of disease and injury in Aboriginal and Torres Strait Islander Peoples: the Indigenous health gap. International Journal of Epidemiology 38, 470–477.
| Burden of disease and injury in Aboriginal and Torres Strait Islander Peoples: the Indigenous health gap.Crossref | GoogleScholarGoogle Scholar |
Wood L, France K, Hunt K, Eades S, Slack-Smith L (2008) Indigenous women and smoking during pregnancy: knowledge, cultural contexts and barriers to cessation. Social Science & Medicine 66, 2378–2389.
| Indigenous women and smoking during pregnancy: knowledge, cultural contexts and barriers to cessation.Crossref | GoogleScholarGoogle Scholar |
