A University of Otago researcher has been awarded a grant to undertake vital research on Fetal Alcohol Spectrum Disorder (FASD) which she says disproportionately affects Māori in epidemic proportions.
Sarah Goldsbury (Ngāti Porou me Te Aitanga-a-Hauiti).
Clinical Neuropsychologist Sarah Goldsbury (Ngāti Porou me Te Aitanga-a-Hauiti) has received a Clinical Research Training Fellowship worth $260,000 from the Health Research Council (HRC) to carry out research on Māori whānau experiences of neuropsychological assessment for FASD.
She is one of one of eight University of Otago researchers carrying out Māori-specific research, who have received an HRC career development award.
Ms Goldsbury is a working clinician based in Tairāwhiti/Gisborne but travels throughout the country to carry out the neuropsychological component of FASD assessments for children and youth in temporary and permanent care and Youth Court.
She says she sees some of the tamariki and rangatahi with the highest and most complex presentations, and sadly, too many are Māori.
“FASD is a complex disability that many do not understand well. There is a clear lack of systemic supports in Aotearoa to both identify and support those with FASD.
“I believe we have an epidemic of FASD in Aotearoa which is largely invisible to many professionals and whanau who do not recognise what they are seeing. And not only are we ignoring this, but we are inadvertently judging and punishing those who have FASD, and their whānau trying to support them on a daily basis.”
Those with FASD are at risk of issues such as secondary mental health problems, trouble with the law, inappropriate sexual behaviour, alcohol and drug use, and are some of the most vulnerable members of the community, Ms Goldsbury says.
The intentional dismantling of traditional Māori society has placed Māori at much greater risk for prenatal exposure and subsequent FASD – with recent research showing 80 per cent of children presenting to one assessment centre were Māori.
Her research will actively seek to integrate a Māori world view in a traditionally Western assessment process, with an aim to be representative and inclusive of whānau Māori.
Ms Goldsbury says as a solo parent she would never have been able to undertake the research, which will form her PhD, without the HRC grant.
“I would never be able to go back to university and complete a PhD while paying the mortgage and putting food on the table without the support of this fellowship from the HRC, and I am very, very grateful and appreciative for this,” she says.
She is grateful to have been gifted the privilege of being supervised by Otago Professor Suzanne Pitama as part of the university's Māori/Indigenous Health Institute.
Jordon Lima (Ngāti Porou).
Fellow HRC grant recipient Jordon Lima (Ngāti Porou) has won both a PhD scholarship and a summer studentship - worth a combined $146,000 - which she says will allow her to study conditions such as Type 2 diabetes, heart disease, gout and obesity.
She says she has watched family and friends struggle with those diseases while not understanding why they are susceptible, and she hopes her research will contribute to identifying the underlying genetic causes to better educate and treat Māori and healthcare professionals about Māori-specific risks of disease.
More than $2.7 million has been awarded to the University of Otago to further work in areas ranging from diabetes and stroke, to mental health.
Deputy Vice-Chancellor (Research and Enterprise) Professor Richard Blaikie says the University is grateful for the funding, which will support the career development of “bright and ambitious researchers”.
“Not only will the research itself lead to important advances in healthcare and well-being, but the projects will allow many of the recipients to advance successfully to the next stage of their careers.”
For interviews:
Sarah Goldsbury
Email sgoldsbury@fasd.org.nz
Jordon Lima
Email Jordon.lima422@gmail.com
Māori-related research funded by the HRC
2021 HRC Career Development Awards (general)
Clinical Research Training Fellowship
Ms Sarah Goldsbury, University of Otago, Christchurch
Māori whānau experiences of neuropsychological assessment for FASD
36 months, $260,000
I am a Clinical Neuropsychologist of Ngāti Porou and Te-Aitanga-a-Hauiti whakapapa. I undertake the neuropsychological component of Fetal Alcohol Spectrum Disorder (FASD) assessments. I work alongside children and youth in temporary and permanent care, and through Youth Court referrals. I am one of few Māori clinicians in this field of clinical practice and research. To date, this is an emerging field of research in Aotearoa, and the impacts of institutional racism within this process and protocol have not been identified. The purpose of this research is to explore and document Māori whānau experiences of the neuropsychological processes in FASD assessment. I will utilise a Kaupapa Māori methodological approach for this qualitative study, using semi-structured interviews, and inductive thematic analysis. The findings of this study will utilise participant voices as experts to formulate how neuropsychological assessment for a diagnosis of FASD can be more responsive and acceptable to Māori whānau.
Dr Ngaire Keenan, University of Otago, Wellington
Defining Māori epilepsy burden and developing an approach for future research
24 months, $173,333
Epilepsy, the most common serious neurological disorder in childhood, affects ~4000 New Zealand children. Although children with epilepsy may live normal lives, 30% have uncontrolled seizures and poor outcomes. Epilepsy is 40 per cent more common in Māori children than other ethnicities. International reports suggest that higher rates of epilepsy result from preventable causes which can be reduced with successful public health initiatives. Dr Ngaire Keenan is a Māori Paediatric Neurology trainee who plans to become a New Zealand clinician scientist. Her PhD aims to describe the syndromes, aetiologies, comorbidities and management of epilepsy in Māori children compared to non-Māori children. If the increased rate of epilepsy in Māori children is due to preventable causes, then culturally appropriate health strategies can be implemented to promote positive change. She will also develop strategies to identify epilepsy cohorts for future research which will ultimately aid her long-term career goal of improving childhood epilepsy outcomes.
2021 Māori Health Career Development Awards
Māori Health PhD Scholarship
Ms Jordon Lima, University of Otago
Equitable Application of Circulating Tumour DNA to the New Zealand Population
36 months, $141,000
Circulating tumour DNA (ctDNA) is DNA released by a tumour into the bloodstream and represents a novel class of blood marker for cancer detection. ctDNA can potentially change how cancer is diagnosed and how patients are monitored during and after treatment. Before ctDNA can be integrated into the New Zealand healthcare system, we must test the technology's clinical utility and determine its best application for reducing health inequities, particularly amongst Māori and rural communities. In this proposed PhD research, I will analyse ctDNA testing for surveillance of stage 2-3 colorectal cancer patients on the West Coast of the South Island. Māori health providers will co-design this study, which will add personalised ctDNA testing to patients post-treatment surveillance plan for approximately 1-2 years. Māori co-design and integration in this project will ensure ethical issues are identified, benefits to Māori are optimised, and tikanga is retained in future ctDNA use.
Māori Health Masters Scholarship
Mr Witana Petley, University of Otago
Experiences of Stroke Rehabilitation for Māori Stroke Survivors and their whanau
24 months, $31,600
Stroke is the second leading cause of death and disability in New Zealand with notable ethnic and socioeconomic disparities. Māori are more likely to have a stroke event compared to non-Maori and are also experiencing strokes at a younger age. Stroke survivors and their caregivers' collective experiences of stroke rehabilitation have been explored and have found positive benefits when caregivers have had active input during physical rehabilitation. However, this research has not been explored for Māori stroke survivors and their whanau members. This research will aim to identify what the current experience of stroke rehabilitation is for our Māori Stroke Survivors and their whanau members. The intention of this study is to identify what type of support will be best-suited to our Māori stroke survivors and their whanau members during their rehabilitation journey.
Māori Health Summer Studentship
Miss Brooke Bridges, University of Otago, Wellington
Understanding how the supportive care needs of Māori with cancer are assessed
3 months, $5,000
Ms Raiha Cook, University of Otago, Wellington
An inquiry into Raukura integration into Euro-centric Otago University
4 months, $5,000
Miss Sade Gilbert-Perenise, University of Otago, Wellington
Utilisation of Wai for the Holistic Wellbeing of Māori
3 months, $5,000
Ms Jordon Lima, University of Otago
Investigating Genetic Links Between Height and Gout in Māori and Pacific people
3 months, $5,000
Ms Saskia van der Wilt, University of Otago
Physiotherapists' use of green-space for life long health conditions
2 months, $5,000
For more information, contact:
Liane Topham-Kindley
Manager, Media Engagement
University of Otago
Tel +64 3 479 9065
Mob +64 21 279 9065
Email liane.topham-kindley@otago.ac.nz
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