Emily Fitzpatrick | The University of Sydney (original) (raw)

Papers by Emily Fitzpatrick

Research paper thumbnail of Case–control study of blink rate in Parkinson’s disease under different conditions

Journal of Neurology, 2011

Research paper thumbnail of 459: Blink rate in Parkinson’s disease: A quantified case-control study

Journal of Clinical Neuroscience, 2008

Research paper thumbnail of Yarning with remote Aboriginal communities about seeking consent for research, culturally respectful community engagement and genuine research partnerships

Internal Medicine Journal, May 1, 2017

Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety se... more Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety sensitive industry and the correlation with diagnosed substance use disorders and possible impairment at work. Methods: The trial involved 1500 paired urine and oral fluid tests performed in accordance with Australian Standard/New Zealand Standard (AS/NZS) 4308:2008 and AS 4760:2006. Workers who returned a positive test were screened for substance use disorders, as defined by DSM-5, and for possible impairment at work following that particular episode of substance use. Results: Substances were detected in 3.7% (n = 56) of urine samples and 0.5% (n = 8) of oral fluid samples (P < 0.0001). One worker (0.07%) had a substance detected on oral fluid alone versus 49 workers (3.3%) who had substances detected on urine alone. Twelve workers returned a positive result, defined as being consistent with the use of an illicit drug or a controlled substance without a clinical indication and prescription. Nine workers tested positive on urine alone, one on oral fluid alone and two on both (P = 0.0114). Of note, 6/11 workers who tested positive on urine had possible impairment at work and 2/11 had a substance use disorder versus 2/3 and 0/3, respectively, who tested positive on oral fluid.

Research paper thumbnail of The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia

BMC Medical Ethics, May 11, 2017

Background: Researchers are required to seek consent from Indigenous communities prior to conduct... more Background: Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. Methods: The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Results: Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research-finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity-two-way learning; and Reaching consent. Conclusion: The project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent.

Research paper thumbnail of Additional file 5: Table S7. of Seeking consent for research with indigenous communities: a systematic review

State/Regional/Local guidelines on seeking consent for research with Indigenous populations. (XLS... more State/Regional/Local guidelines on seeking consent for research with Indigenous populations. (XLSX 35Â kb)

Research paper thumbnail of Additional file 1: Table S3. of Seeking consent for research with indigenous communities: a systematic review

Medical Subject Headings and key words used to search Medline. (XLSX 43Â kb)

Research paper thumbnail of Additional file 4: Table S6. of Seeking consent for research with indigenous communities: a systematic review

National guidelines on seeking consent for research with Indigenous populations. (XLSX 40Â kb)

Research paper thumbnail of Additional file 3: Table S5. of Seeking consent for research with indigenous communities: a systematic review

International guidelines for seeking consent for research with Indigenous populations. (XLSM 39Â kb)

Research paper thumbnail of Additional file 2: Table S4. of Seeking consent for research with indigenous communities: a systematic review

Research describing the consent process with Indigenous populations in detail. (XLSM 50Â kb)

Research paper thumbnail of Emergency department presentations by children in remote Australia: a population-based study

Background Aboriginal leaders invited us to examine the frequency and reasons for children presen... more Background Aboriginal leaders invited us to examine the frequency and reasons for children presenting to Fitzroy Crossing Hospital emergency department (ED), Western Australia.Methods ED presentations (2007-11 inclusive) were examined for children born in the Fitzroy Valley in 2002-03.Results ED data were examined for 127/134 (94.7%) eligible children, with 1058 presentations for 1743 conditions in children aged 3-9 over 5 years. Most (81%) had at least one ED presentation (median 9.0, range 1-50). There were no differences by sex or season but numbers of presentations increased over time. Common presentations included: injury (15.1%), diseases of the ear (14.9%), skin (13.8%), respiratory tract (13.4%), infectious and parasitic diseases (9.8%), screening, follow up, and social reasons (16.0%). Household over-crowding, financial and food insecurity were common socio-economic factors recorded at ED presentation. Prenatal alcohol exposure (PAE) was significantly associated with high-f...

Research paper thumbnail of Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions

BMC Health Services Research, 2019

Background Despite a national focus on closing the gap between Aboriginal and non-Aboriginal chil... more Background Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. Methods Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. Results We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health profe...

Research paper thumbnail of The picture talk project: Aboriginal community input on consent for research

BMC Medical Ethics, 2019

Background: The consent and community engagement process for research with Indigenous communities... more Background: The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. Methods: Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. Results: Focus groups with Aboriginal community members (n = 6 focus groups of 3-7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley-Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaningmilli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. Conclusion: Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Research paper thumbnail of Research protocol for the Picture Talk Project: a qualitative study on research and consent with remote Australian Aboriginal communities

BMJ open, Dec 28, 2017

Research with Indigenous populations is not always designed with cultural sensitivity. Few public... more Research with Indigenous populations is not always designed with cultural sensitivity. Few publications evaluate or describe in detail seeking consent for research with Indigenous participants. When potential participants are not engaged in a culturally respectful manner, participation rates and research quality can be adversely affected. It is unethical to proceed with research without truly informed consent. We describe a culturally appropriate research protocol that is invited by Aboriginal communities of the Fitzroy Valley in Western Australia. The Picture Talk Project is a research partnership with local Aboriginal leaders who are also chief investigators. We will interview Aboriginal leaders about research, community engagement and the consent process and hold focus groups with Aboriginal community members about individual consent. Cultural protocols will be applied to recruit and conduct research with participants. Transcripts will be analysed using NVivo10 qualitative softwa...

Research paper thumbnail of Yarning with remote Aboriginal communities about seeking consent for research, culturally respectful community engagement and genuine research partnerships

Internal Medicine Journal, 2017

Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety se... more Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety sensitive industry and the correlation with diagnosed substance use disorders and possible impairment at work. Methods: The trial involved 1500 paired urine and oral fluid tests performed in accordance with Australian Standard/New Zealand Standard (AS/NZS) 4308:2008 and AS 4760:2006. Workers who returned a positive test were screened for substance use disorders, as defined by DSM-5, and for possible impairment at work following that particular episode of substance use. Results: Substances were detected in 3.7% (n = 56) of urine samples and 0.5% (n = 8) of oral fluid samples (P < 0.0001). One worker (0.07%) had a substance detected on oral fluid alone versus 49 workers (3.3%) who had substances detected on urine alone. Twelve workers returned a positive result, defined as being consistent with the use of an illicit drug or a controlled substance without a clinical indication and prescription. Nine workers tested positive on urine alone, one on oral fluid alone and two on both (P = 0.0114). Of note, 6/11 workers who tested positive on urine had possible impairment at work and 2/11 had a substance use disorder versus 2/3 and 0/3, respectively, who tested positive on oral fluid.

Research paper thumbnail of The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia

BMC medical ethics, Jan 11, 2017

Researchers are required to seek consent from Indigenous communities prior to conducting research... more Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Communi...

Research paper thumbnail of Prevalence and profile of Neurodevelopment and Fetal Alcohol Spectrum Disorder (FASD) amongst Australian Aboriginal children living in remote communities

Research in developmental disabilities, Jan 9, 2017

Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neu... more Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neurodevelopmental performance of Australian Aboriginal children. An important risk factor for neurodevelopmental vulnerability is prenatal alcohol exposure (PAE), which places children at risk for Fetal Alcohol Spectrum Disorder (FASD). This study assesses neurodevelopment outcomes in a population of Australian Aboriginal children with and without PAE. Children born in 2002/2003, and living in the Fitzroy Valley, Western Australia between April 2010 and November 2011, were eligible (N=134). Sociodemographic and antenatal data, including PAE, were collected by interview with 127/134 (95%) consenting parents/caregivers. Maternal/child medical records were reviewed. Neurodevelopment was assessed by clinicians blinded to PAE in 108/134 (81%) children and diagnoses on the FASD spectrum were assigned. Neurodevelopmental disorder was documented in 34/108 children (314.8 per 1000). Any diagnosis o...

Research paper thumbnail of Seeking consent for research with indigenous communities: a systematic review

BMC Medical Ethics, 2016

Background: When conducting research with Indigenous populations consent should be sought from bo... more Background: When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. Methods: A systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review. Results: Of 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and "plain language" forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the 'Grey literature' concerns about the consent process are identified but no solutions are offered. Conclusion: Consultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process.

Research paper thumbnail of Prevalence of fetal alcohol syndrome in a population-based sample of children living in remote Australia: The Lililwan Project

Journal of paediatrics and child health, Jan 15, 2015

Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to ... more Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. Population-based prevalence study using active case ascertainment in children born in 2002/2003 and living in the Fitzroy Valley, in Western Australia (April 2010-November 2011) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the...

Research paper thumbnail of Prevalence of fetal alcohol syndrome in a population-based sample of children living in remote Australia: The Lililwan Project

Journal of Paediatrics and Child Health, 2015

Aim: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researcher... more Aim: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. Methods: Population-based prevalence study using active case ascertainment in children born in) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. Results: In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the first trimester and 50% throughout pregnancy. Ten of 13 mothers had Alcohol Use Disorders Identification Test scores and all drank at a high-risk level. Of children with FAS/pFAS, 69% had microcephaly, 85% had weight deficiency and all had facial dysmorphology and central nervous system abnormality/ impairment in three to eight domains. Conclusions: The population prevalence of FAS/pFAS in remote Aboriginal communities of the Fitzroy Valley is the highest reported in Australia and similar to that reported in high-risk populations internationally. Results are likely to be generalisable to other age groups in the Fitzroy Valley and other remote Australian communities with high-risk alcohol use during pregnancy. Prevention of FAS/pFAS is an urgent public health challenge.

Research paper thumbnail of Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions

BMC Health Services Research, 2019

Background: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal chi... more Background: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. Methods: Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. Results: We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health professionals. Funding and administrative arrangements were complex and services poorly coordinated and sometimes duplicated. The large geographic area, distances, extreme climate and lack of public and private transport challenge service delivery. The need to attend to acute illness acts to deprioritise crucial primary and preventative health care and capacity for dealing with chronic, complex disorders. Some services lack cultural safety and there is a critical shortage of Aboriginal Health Workers (AHW). Conclusions: Services are fragmented and variable and would benefit from a coordinated approach between government, community-controlled agencies, health and education sectors. A unifying model of care with emphasis on capacity-building in Aboriginal community members and training and support for AHW and other health professionals is required but must be developed in consultation with communities. Innovative diagnostic and care models are needed to address these challenges, which are applicable to many remote Australian settings outside the Fitzroy Valley, as well as other countries globally. Our results will inform future health service planning and strategies to attract and retain health professionals to work in these demanding settings. A prospective audit of child health services is now needed to inform improved planning of child health services with a focus on identifying service gaps and training needs and better coordinating existing services to improve efficiency and potentially also efficacy.

Research paper thumbnail of Case–control study of blink rate in Parkinson’s disease under different conditions

Journal of Neurology, 2011

Research paper thumbnail of 459: Blink rate in Parkinson’s disease: A quantified case-control study

Journal of Clinical Neuroscience, 2008

Research paper thumbnail of Yarning with remote Aboriginal communities about seeking consent for research, culturally respectful community engagement and genuine research partnerships

Internal Medicine Journal, May 1, 2017

Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety se... more Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety sensitive industry and the correlation with diagnosed substance use disorders and possible impairment at work. Methods: The trial involved 1500 paired urine and oral fluid tests performed in accordance with Australian Standard/New Zealand Standard (AS/NZS) 4308:2008 and AS 4760:2006. Workers who returned a positive test were screened for substance use disorders, as defined by DSM-5, and for possible impairment at work following that particular episode of substance use. Results: Substances were detected in 3.7% (n = 56) of urine samples and 0.5% (n = 8) of oral fluid samples (P < 0.0001). One worker (0.07%) had a substance detected on oral fluid alone versus 49 workers (3.3%) who had substances detected on urine alone. Twelve workers returned a positive result, defined as being consistent with the use of an illicit drug or a controlled substance without a clinical indication and prescription. Nine workers tested positive on urine alone, one on oral fluid alone and two on both (P = 0.0114). Of note, 6/11 workers who tested positive on urine had possible impairment at work and 2/11 had a substance use disorder versus 2/3 and 0/3, respectively, who tested positive on oral fluid.

Research paper thumbnail of The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia

BMC Medical Ethics, May 11, 2017

Background: Researchers are required to seek consent from Indigenous communities prior to conduct... more Background: Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. Methods: The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Results: Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research-finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity-two-way learning; and Reaching consent. Conclusion: The project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent.

Research paper thumbnail of Additional file 5: Table S7. of Seeking consent for research with indigenous communities: a systematic review

State/Regional/Local guidelines on seeking consent for research with Indigenous populations. (XLS... more State/Regional/Local guidelines on seeking consent for research with Indigenous populations. (XLSX 35Â kb)

Research paper thumbnail of Additional file 1: Table S3. of Seeking consent for research with indigenous communities: a systematic review

Medical Subject Headings and key words used to search Medline. (XLSX 43Â kb)

Research paper thumbnail of Additional file 4: Table S6. of Seeking consent for research with indigenous communities: a systematic review

National guidelines on seeking consent for research with Indigenous populations. (XLSX 40Â kb)

Research paper thumbnail of Additional file 3: Table S5. of Seeking consent for research with indigenous communities: a systematic review

International guidelines for seeking consent for research with Indigenous populations. (XLSM 39Â kb)

Research paper thumbnail of Additional file 2: Table S4. of Seeking consent for research with indigenous communities: a systematic review

Research describing the consent process with Indigenous populations in detail. (XLSM 50Â kb)

Research paper thumbnail of Emergency department presentations by children in remote Australia: a population-based study

Background Aboriginal leaders invited us to examine the frequency and reasons for children presen... more Background Aboriginal leaders invited us to examine the frequency and reasons for children presenting to Fitzroy Crossing Hospital emergency department (ED), Western Australia.Methods ED presentations (2007-11 inclusive) were examined for children born in the Fitzroy Valley in 2002-03.Results ED data were examined for 127/134 (94.7%) eligible children, with 1058 presentations for 1743 conditions in children aged 3-9 over 5 years. Most (81%) had at least one ED presentation (median 9.0, range 1-50). There were no differences by sex or season but numbers of presentations increased over time. Common presentations included: injury (15.1%), diseases of the ear (14.9%), skin (13.8%), respiratory tract (13.4%), infectious and parasitic diseases (9.8%), screening, follow up, and social reasons (16.0%). Household over-crowding, financial and food insecurity were common socio-economic factors recorded at ED presentation. Prenatal alcohol exposure (PAE) was significantly associated with high-f...

Research paper thumbnail of Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions

BMC Health Services Research, 2019

Background Despite a national focus on closing the gap between Aboriginal and non-Aboriginal chil... more Background Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. Methods Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. Results We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health profe...

Research paper thumbnail of The picture talk project: Aboriginal community input on consent for research

BMC Medical Ethics, 2019

Background: The consent and community engagement process for research with Indigenous communities... more Background: The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. Methods: Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. Results: Focus groups with Aboriginal community members (n = 6 focus groups of 3-7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley-Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaningmilli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. Conclusion: Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Research paper thumbnail of Research protocol for the Picture Talk Project: a qualitative study on research and consent with remote Australian Aboriginal communities

BMJ open, Dec 28, 2017

Research with Indigenous populations is not always designed with cultural sensitivity. Few public... more Research with Indigenous populations is not always designed with cultural sensitivity. Few publications evaluate or describe in detail seeking consent for research with Indigenous participants. When potential participants are not engaged in a culturally respectful manner, participation rates and research quality can be adversely affected. It is unethical to proceed with research without truly informed consent. We describe a culturally appropriate research protocol that is invited by Aboriginal communities of the Fitzroy Valley in Western Australia. The Picture Talk Project is a research partnership with local Aboriginal leaders who are also chief investigators. We will interview Aboriginal leaders about research, community engagement and the consent process and hold focus groups with Aboriginal community members about individual consent. Cultural protocols will be applied to recruit and conduct research with participants. Transcripts will be analysed using NVivo10 qualitative softwa...

Research paper thumbnail of Yarning with remote Aboriginal communities about seeking consent for research, culturally respectful community engagement and genuine research partnerships

Internal Medicine Journal, 2017

Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety se... more Aims: To determine the relative detection rates of urine versus oral fluid testing in a safety sensitive industry and the correlation with diagnosed substance use disorders and possible impairment at work. Methods: The trial involved 1500 paired urine and oral fluid tests performed in accordance with Australian Standard/New Zealand Standard (AS/NZS) 4308:2008 and AS 4760:2006. Workers who returned a positive test were screened for substance use disorders, as defined by DSM-5, and for possible impairment at work following that particular episode of substance use. Results: Substances were detected in 3.7% (n = 56) of urine samples and 0.5% (n = 8) of oral fluid samples (P < 0.0001). One worker (0.07%) had a substance detected on oral fluid alone versus 49 workers (3.3%) who had substances detected on urine alone. Twelve workers returned a positive result, defined as being consistent with the use of an illicit drug or a controlled substance without a clinical indication and prescription. Nine workers tested positive on urine alone, one on oral fluid alone and two on both (P = 0.0114). Of note, 6/11 workers who tested positive on urine had possible impairment at work and 2/11 had a substance use disorder versus 2/3 and 0/3, respectively, who tested positive on oral fluid.

Research paper thumbnail of The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia

BMC medical ethics, Jan 11, 2017

Researchers are required to seek consent from Indigenous communities prior to conducting research... more Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Interviews with Aboriginal leaders (n = 20) were facilitated by a local Aboriginal Communi...

Research paper thumbnail of Prevalence and profile of Neurodevelopment and Fetal Alcohol Spectrum Disorder (FASD) amongst Australian Aboriginal children living in remote communities

Research in developmental disabilities, Jan 9, 2017

Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neu... more Despite multiple risk factors for neurodevelopmental vulnerability, few studies have assessed neurodevelopmental performance of Australian Aboriginal children. An important risk factor for neurodevelopmental vulnerability is prenatal alcohol exposure (PAE), which places children at risk for Fetal Alcohol Spectrum Disorder (FASD). This study assesses neurodevelopment outcomes in a population of Australian Aboriginal children with and without PAE. Children born in 2002/2003, and living in the Fitzroy Valley, Western Australia between April 2010 and November 2011, were eligible (N=134). Sociodemographic and antenatal data, including PAE, were collected by interview with 127/134 (95%) consenting parents/caregivers. Maternal/child medical records were reviewed. Neurodevelopment was assessed by clinicians blinded to PAE in 108/134 (81%) children and diagnoses on the FASD spectrum were assigned. Neurodevelopmental disorder was documented in 34/108 children (314.8 per 1000). Any diagnosis o...

Research paper thumbnail of Seeking consent for research with indigenous communities: a systematic review

BMC Medical Ethics, 2016

Background: When conducting research with Indigenous populations consent should be sought from bo... more Background: When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. Methods: A systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review. Results: Of 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and "plain language" forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the 'Grey literature' concerns about the consent process are identified but no solutions are offered. Conclusion: Consultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process.

Research paper thumbnail of Prevalence of fetal alcohol syndrome in a population-based sample of children living in remote Australia: The Lililwan Project

Journal of paediatrics and child health, Jan 15, 2015

Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to ... more Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. Population-based prevalence study using active case ascertainment in children born in 2002/2003 and living in the Fitzroy Valley, in Western Australia (April 2010-November 2011) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the...

Research paper thumbnail of Prevalence of fetal alcohol syndrome in a population-based sample of children living in remote Australia: The Lililwan Project

Journal of Paediatrics and Child Health, 2015

Aim: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researcher... more Aim: Aboriginal leaders concerned about high rates of alcohol use in pregnancy invited researchers to determine the prevalence of fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) in their communities. Methods: Population-based prevalence study using active case ascertainment in children born in) (n = 134). Socio-demographic and antenatal data, including alcohol use in pregnancy, were collected by interview with 127/134 (95%) consenting parents/care givers. Maternal/child medical records were reviewed. Interdisciplinary assessments were conducted for 108/134 (81%) children. FAS/pFAS prevalence was determined using modified Canadian diagnostic guidelines. Results: In 127 pregnancies, alcohol was used in 55%. FAS or pFAS was diagnosed in 13/108 children, a prevalence of 120 per 1000 (95% confidence interval 70-196). Prenatal alcohol exposure was confirmed for all children with FAS/pFAS, 80% in the first trimester and 50% throughout pregnancy. Ten of 13 mothers had Alcohol Use Disorders Identification Test scores and all drank at a high-risk level. Of children with FAS/pFAS, 69% had microcephaly, 85% had weight deficiency and all had facial dysmorphology and central nervous system abnormality/ impairment in three to eight domains. Conclusions: The population prevalence of FAS/pFAS in remote Aboriginal communities of the Fitzroy Valley is the highest reported in Australia and similar to that reported in high-risk populations internationally. Results are likely to be generalisable to other age groups in the Fitzroy Valley and other remote Australian communities with high-risk alcohol use during pregnancy. Prevention of FAS/pFAS is an urgent public health challenge.

Research paper thumbnail of Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions

BMC Health Services Research, 2019

Background: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal chi... more Background: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. Methods: Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. Results: We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health professionals. Funding and administrative arrangements were complex and services poorly coordinated and sometimes duplicated. The large geographic area, distances, extreme climate and lack of public and private transport challenge service delivery. The need to attend to acute illness acts to deprioritise crucial primary and preventative health care and capacity for dealing with chronic, complex disorders. Some services lack cultural safety and there is a critical shortage of Aboriginal Health Workers (AHW). Conclusions: Services are fragmented and variable and would benefit from a coordinated approach between government, community-controlled agencies, health and education sectors. A unifying model of care with emphasis on capacity-building in Aboriginal community members and training and support for AHW and other health professionals is required but must be developed in consultation with communities. Innovative diagnostic and care models are needed to address these challenges, which are applicable to many remote Australian settings outside the Fitzroy Valley, as well as other countries globally. Our results will inform future health service planning and strategies to attract and retain health professionals to work in these demanding settings. A prospective audit of child health services is now needed to inform improved planning of child health services with a focus on identifying service gaps and training needs and better coordinating existing services to improve efficiency and potentially also efficacy.