Djaalinj Waakinj (listening talking): Rationale, cultural governance, methods, population characteristics – an urban Aboriginal birth cohort study of otitis media

ABSTRACT

The majority of Australian Aboriginal and Torres Strait Islander (hereafter referred to as “Aboriginal”) people live in urban centres. Otitis media (OM) occurs at a younger age, prevalence is higher and hearing loss and other serious complications are more common in Aboriginal than non-Aboriginal children. Despite this, data on the burden of OM and hearing loss in urban Aboriginal children are limited. This project was initiated following a request from urban Aboriginal people who felt the focus on more remote communities often meant urban communities were forgotten. This paper describes the development of an urban Aboriginal birth cohort study of OM that is culturally secure, outlines the process of community consultation and establishment of an Aboriginal Community Advisory Group to provide cultural governance, and presents preliminary results. Djaalinj Waakinj is an ongoing study being conducted in Perth, Western Australia, on Noongar Boodja (country). Aboriginal researchers visit people’s homes to collect sociodemographic and environmental data at enrolment of babies aged <3 months; otoscopy and tympanometry are conducted by an Aboriginal research assistant or a nurse at ages 2–4, 6–8 and 12–18 months, and full audiological assessment conducted at 9–12 months. To date, 125 participants have been enrolled; 39% of 71 children aged 2–4 months and 52% of 44 children aged 6–8 months had evidence of OM. To our knowledge, this is the first prospective cohort study aiming to determine the prevalence and risk factors associated with OM in Aboriginal infants residing in an urban area.

KEYWORDS:

• Aboriginal
• otitis media
• urban
• pre-school
• cultural governance

Acknowledgements

First and foremost we thank all the families who agreed to take part in the study. We thank the members of the Aboriginal Community Advisory Group (the late and sadly missed Eric Wynne, Leon Hayward, Doris Getta, Hannah Nelson, Ricki Lee Dabb, Raelene Hayward, Doreen Nelson, Helen Kickett, Glenys Yarran, Justin Kickett, Chantale Yarran, O'Sheala Yarran, Glen Hayden, Helen Walley-Stack) for their continuing guidance and wisdom. ENT specialists Drs Francis Lannigan, George Sim and Anton Hinton-Barr provide clinical support and expertise and we thank Kirsty Tomlinson and Tooey Tran, Perth Children’s Hospital (PCH) for promoting the study to their peers and supporting the families to attend appointments at PCH. We are grateful to Clory Carrello who enabled us to establish our office at Cockburn Integrated Health (CIH) and is committed to establishing a strong ear health programme there. We thank the staff at Hearing Australia, Telethon Speech & Hearing, Child Adolescent Health Services-Child Development Services for their ongoing support and provision of clinical facilities to conduct hearing assessments. We thank the staff at Boodjari Yorgas Midwifery Group Practice at Armadale Hospital, South Coastal Babbingur Mia, South Metropolitan Health Services’ Community Health services, and Fiona Stanley Hospital for promoting the study and referring families to us, and to staff at Moorditj Koort Aboriginal Health Wellbeing Service and Derbarl Yerrigan Health Services for their ongoing support. We thank Danny Ford from Kambarang Services for facilitating our initial community forums in Armadale and Kwinana. We thank Karen Jackman, Practice Manager for Dr George Sim, for assisting in the establishment of the ENT clinics at CIH, and St John of God Hospital (SJOG) Murdoch for naming Djaalinj Waakinj as their Charity of the Year, thus enabling OM-related surgery at no cost to families.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Notes on contributors

Ms Valerie Swift is a Menang Noongar woman from the Great Southern region of Western Australia (WA). She is a qualified Aboriginal Health Worker and has worked in the area of Aboriginal health, education and welfare for more than 40 years. Ms Swift is currently the Coordinator of the Djaalinj Waakinj Urban Aboriginal Ear Health Project and Aboriginal Cultural Governance Advisor for the Wesfarmers Centre of Vaccines and Infectious Diseases. Ms Swift contributes nationally as a member of the National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Ear and Hearing Health of Aboriginal and Torres Strait Islander Children (CRE_ICHEAR), as a Working Group member of the WA Child Ear Health Strategy and globally as a member of the WHO World Hearing Forum.

Ms June Doyle is a registered nurse with over 40 years’ experience in public and community health and most recently in research. She has held diverse positions, mostly in rural and remote WA, ranging from sole practitioner at a remote nursing post to inaugural Director of Population Health of the Goldfields South East Health region, WA.

Ms Holly Richmond completed a Bachelor’s degree with Honours, majoring in Aboriginal Health and Wellbeing, at the University of Western Australia and is currently a doctoral candidate focusing on evaluation of primary health care of otitis media in Aboriginal children.

Ms Natasha Morrison is a Noongar woman. Her family is from the South West region of Western Australia. She is a fully-qualified Childcare Educator and an Aboriginal Primary Health Care Practitioner and has worked in childcare for 14 years. For the past 3 years Ms Morrison has been employed as an Aboriginal Research Assistant with the Djaalinj Waakinj Urban Aboriginal Ear Health Project. Ms Morrison’s own ear health journey is what drives her to contribute and value the work this research project is undertaking.

Ms Sharon Weeks is an audiologist with more than 40 years’ experience. She was the first Community Senior Audiologist in the Health Department of WA and has worked with the WA Disability Services Commission and in the private sector. She has conducted ear health surveys in Aboriginal communities, been heavily involved in training health service providers, and provided audiological support for ear health research at the Telethon Kids Institute for the past 20 years.

A/Prof Peter Richmond is a paediatrician and clinical researcher with over 25 years’ research experience focused on reducing the burden of infectious diseases and related problems with a particular focus on children and disadvantaged populations. He is committed to improving outcomes related to otitis media by undertaking translational research and advocacy for improving services and is an investigator on the NHMRC-funded CRE_ICHEAR.

Dr Chris Brennan-Jones is a clinical audiologist and researcher focused on improving outcomes for children with ear and hearing disorders. He is an NHMRC Research Fellow, Head of Ear Health at Telethon Kids Institute and a senior audiologist at Perth Children’s Hospital.

A/Prof Deborah Lehmann is a medical practitioner and epidemiologist who led pneumonia research for 17 years in Papua New Guinea before establishing otitis media research at the Telethon Kids Institute. She led an NHMRC-funded Indigenous Capacity Building Grant and is investigator on the NHMRC-funded CRE_ICHEAR. She is an Officer (AO) in the Order of Australia.

Additional information

Funding

This work was supported by a grant from the Telethon-Perth Children’s Hospital Research Fund and funding from the Wesfarmers Centre of Vaccines and Infectious Diseases (WCVID), Telethon Kids Institute. D Lehmann and Rosemary Walley received salary support from the National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Ear and Hearing Health of Aboriginal and Torres Strait Islander Children (CRE_ICHEAR) #1078557. June Doyle’s salary was provided by the Vaccine Trials Group, WCVID, Telethon Kids Institute.