Research Focus: Perinatal Mental Health, Aboriginal Health

Project Overview: The KMMS project emerged from concerns among Kimberley healthcare professionals that the Edinburgh Postnatal Depression Scale (EPDS) was unsuitable for Aboriginal women. A community-based participatory action project led to the creation of the two-part KMMS. Part 1 is an adapted version of the EPDS; Part 2 is a structured clinical yarn that explores psycho-social stressors and resilience factors in Aboriginal women’s lives. This approach leads to deeper connections, enabling a fuller understanding of each woman’s context.

The KMMS offers a culturally respectful approach to mental health screening, fostering trust and engagement between Aboriginal women and their healthcare professionals. The validation study showed that almost all participants had protective factors that helped mitigate mental health risks, with family relationships being the most significant protective factor. Healthcare providers found that the KMMS enabled a more holistic view of women’s mental health by considering both risk and protective factors.

The KMMS underscores the importance of culturally tailored approaches in perinatal mental health care, showing that innovative screening methods can be sustainably implemented into routine clinical practice. It has influenced clinical practice by providing a culturally safe framework for assessing perinatal mental health. Implementation into policy and practice includes:

• Endorsed by the Kimberley Aboriginal Health Planning Forum, and the 2024 edition of the ‘National Guide to a Preventive Health Assessment for Aboriginal and Torres Strait Islander People’ (RACGP/NACCHO)
• Included in the national iCOPE perinatal mental health screening platform
• Integrated with Electronic Medical Record systems, supporting clinical use and sustainability
• Free online KMMS training with over 550 people trained since 2019

Team Members:

Research Focus: Maternal and Child Health, Indigenous Maternal Care, Women’s Health

Project Overview: This project addressed the challenges of delivering quality healthcare to pregnant women and young children in remote settings. Using a randomised stepped-wedge cluster design, Nini midwife coordinators provided ongoing support to primary care providers through phone, email, and on-site visits. Key areas of focus included:

• Maternal nutrition and management of substance use (alcohol and smoking)
• Social and emotional well-being, guided by the Kimberley Mum’s Mood Scale (KMMS)
• Treatment and follow-up for maternal and infant anaemia
• Early infant care practices, including breastfeeding, bonding, and attachment
• Coordination and planning for referrals and discharge
• Regional screening protocols, including KMMS for perinatal mental health and ORCHID for gestational diabetes
• On-the-job education in using electronic primary care systems

To measure impact, Nini child health workers in the West and East Kimberley assessed neurodevelopment and anaemia levels in infants and their mothers when they reached 6–10 months. At this assessment, mothers agree that researchers access their antenatal medical records. Data from the file audits is currently being analysed to examine at iron screening practices, including adherence to protocol and the incidence of iron deficiency, anaemia and iron deficiency anaemia during pregnancy. Additional analysis may consider the antenatal factors associated with iron deficiency during and after pregnancy.

This project emphasises the importance of culturally safe antenatal care, the value of positive provider relationships, and the role of family support. Findings highlight Aboriginal fathers' desire to participate actively during pregnancy and point to a need for resources that involve fathers in antenatal care. The insights provided are shaping a more patient-centred approach to antenatal care for Aboriginal families in remote regions.

Team Members:

• David Atkinson, Julia Marley, Emma Griffiths, Erica Spry, Emma Carlin and Cathryn Josif - Rural Clinical School of WA, Broome
• Catherine Engelke - Rural Clinical School or WA, Kununurra
• Stephanie Trust, Pat McCready, Joanne Forbes, Zaccariah Cox and Janet de San Miguel - Kimberley Aboriginal Medical Services, Broome
• Kristy Newett and Melissa Williams - WA Country Health Service, Kimberley
• Karen Edmond - UWA School of Paediatrics and Child Health, Perth
• Natalie Strobel - UWA Medical School, Perth
• Rhonda Marriott - Murdoch University School of Nursing, Perth
• Stephanie Sherrard - Princess Margaret Hospital for Children, Perth

Current Funding and Support: National Health and Medical Research Fund [NHMRC], 2015-2019 (Five years) $1.97M.

Plain Language Reports: Nini Women_Plain language

Publications:

Seear KH, Spry EP, Carlin E, Atkinson DN, Marley JV. Aboriginal women’s experiences of strengths and challenges in antenatal care in the Kimberley: A qualitative study. Women and Birth 2021, 34(6), 570-577. DOI:10.1016/j.wombi.2020.12.009

Carlin E, Cox Z, Spry E, Monahan C, Marley JV, Atkinson D. “When I got the news”: Aboriginal fathers in the Kimberley yarning about their antenatal experiences. Health Promotion Journal of Australia 2021, 32(3),513-522. DOI:10.1002/hpja.375

Get Involved: for further details, please contact Steve Pratt: [email protected] 

Research Focus: Women’s Health, Diabetes, Health Services

Project Overview: Maternal hyperglycaemia in pregnancy (HIP) is a significant intergenerational issue. HIP increases the risk for poor birth outcomes, resulting in prolonged hospitalisation and requirement for special neonatal care. It also increases risk of chronic metabolic disease for both mothers and offspring. Management of HIP can improve birth outcomes, and long-term lifestyle interventions after delivery can reduce progression to diabetes. For women without known diabetes or prediabetes, detecting HIP is complex and requires using a two-hour 75 g oral glucose tolerance test (OGTT) or sugar drink test. Screening for HIP happens on or near first antenatal presentation for those with risk-factors (early) and between 24–28 weeks' gestation (routine). We established the ORCHID study to improve screening for and management of HIP in regional, rural and remote communities in Western Australia. Through this study, we have identified several deficiencies and opportunities in current HIP screening protocols. 

Improving early screening: A HbA1c in early pregnancy identifies Aboriginal women with high-risk for having large babies. Both Aboriginal and non-Aboriginal women were more likely to do an HbA1c test early in pregnancy compared to an early OGTT.

Issues with 24–28-week screening: Many rural and remote Australian women are not tested using the OGTT. Two-thirds of women with GDM who do the test are missed due to blood glucose sample instability. This glucose instability means that we miss identifying pregnancies at risk for large babies. ORCHID Co-lead Investigators are also members of a national Harmonisation Glucose Preanalytical Working Group to provide advice on how clinics and laboratories can improve OGTT protocols. Despite awareness and effort expended in providing universal screening, current screening guidelines are still not being achieved in regional, rural and remote areas. Reliance on the OGTT is part of the problem. Implementation into policy and practice is built into our research projects. So far, we:

• Are supporting Kimberley Aboriginal Community Controlled Health Organisations in implementing pathology tubes that stabilise glucose immediately and auditing the impact of this change.

• Are advocating for changes to laboratory practice across Australia to address the glucose stability issue through the National Harmonisation Glucose Preanalytical Working Group.

• Have produced a joint position statement that outlines approaches to simplify screening for HIP in Kimberley Aboriginal antenatal patients. We are supporting the 2024 revision of the Kimberley Clinical Protocol for Diabetes in Pregnancy.

ORCHID Team: The ORCHID Study is a collaborative research project between the Rural Clinical School of WA and WA Aboriginal Community Controlled Health Organisations, as well as WA Country Health Service. Our state-wide team consists of researchers, clinicians and community members. We acknowledge all study participants and health services who have assisted with the ORCHID Study.  

Co-Lead Investigators: 

• Julia Marley - Rural Clinical School of WA, Broome
• Erica Spry, Bardi Jawi Traditional Owner - Rural Clinical School of WA and Kimberley Aboriginal Medical Services, Broome
• Emma Jamieson - Rural Clinical School of WA, Bunbury

Locations: Kimberley, Midwest, Southwest, Goldfields and Great Southern

Current Funding and Support: We thank all partner health services for their significant in-kind contributions. We have also received $4 M in MRFF and FHRI grant funding to 2027.

Plain Language Reports: ORCHID-Plain Language Reports

Publications:

Kirke A, Atkinson D, Moore S, Sterry K, Singleton S, Roxburgh C, Parrish K, Porter C, Marley JV. Diabetes screening in pregnancy failing women in rural WA: An audit of oral glucose tolerance test completion rates. Aust J Rural Health 2019; 27:64-69. DOI:10.1111/ajr.12465

Jamieson E, Spry E, Kirke A, Atkinson D, Marley JV. Real-world gestational diabetes screening: problems with the oral glucose tolerance test in rural and remote Australia. Int J Environ Res Public Health 2019; 16: 4488.DOI:10.3390/ijerph16224488

Jamieson E, Spry E, Kirke A, Atkinson D, Roxburgh C, Marley JV. Underestimation of risk for large babies in rural and remote Australia: Time to change plasma glucose collection protocols. J Clinical Translational Endocrinology 2021; 23:100247. DOI:10.1016/j.jcte.2020.100247

Jamieson EL, Spry EP, Kirke AB, Griffiths E, Porter C, Roxburgh C, Singleton S, Sterry K, Atkinson DN, Marley JV. Prediabetes and pregnancy: Early pregnancy HbA1c identifies Australian Aboriginal women with high-risk of gestational diabetes mellitus and adverse perinatal outcomes. Diabetes Research Clinical Practice 2021; 176:108868.  DOI:10.1016/j.diabres.2021.108868

Jamieson E, Spry E, Kirke A, Atkinson D, Roxburgh C, Marley JV. Variations in the Prevalence of Gestational Diabetes Mellitus with Remote Testing and a Pragmatic Solution to Improve Accuracy. Diabetes Care 2021; 44:e4-e5.  DOI:10.2337/dc20-2211

Jamieson E, Spry E, Kirke A, Griffiths E, Porter C, Roxburgh C, Singleton S, Sterry K, Atkinson DN, Marley JV.  Real-world screening for diabetes in early pregnancy: improved screening coverage using universal glycated haemoglobin. Primary Care Diabetes 2021; 15:995-1001. DOI:10.1016/j.pcd.2021.09.011

Jamieson E. Developing algorithms to improve predicting the development of and screening for gestational diabetes mellitus in rural communities. Doctoral Thesis, The University of Western Australia 2022. DOI:10.26182/6fcx-aj38

Jamieson EL, Dimeski G, Flatman R, Hickman PE, Jones GRD, Marley JV, McIntyre HD, McNeil AR, Nolan CJ, Potter JM, Sweeting A, Ward P, Williams P, Horvath AR. Oral glucose tolerance test to diagnose gestational diabetes mellitus: impact of variations in specimen handling. Clinical Biochemistry 2023; 115:33-48. DOI:10.1016/j.clinbiochem.2022.10.002

Kirke AB, Spry E, Atkinson D, Sinclair C, Marley JV. Oral glucose tolerance test – The imperfect gold standard for gestational diabetes screening: A qualitative study involving clinicians in regional, rural and remote areas of Western Australia. Health Promotion J Aust 2024;899. DOI:10.1002/hpja.899

Get Involved: for further details, please contact the ORCHID Study team  [email protected]

Research Focus: Contraception Use, Pregnancy Planning, Aboriginal Women’s Health

Project Overview: Aboriginal Australians face well-documented health disparities, including in reproductive health. Access to contraception for those who do not wish to become pregnant and preconception care for those planning pregnancy, are fundamental rights.

At this project’s inception, limited information was available on remote Aboriginal women’s experiences with contraception, pregnancy planning, and preconception care, and few guidelines existed to enhance services in these areas. This project used community consultations and combined quantitative and qualitative methods. Data from electronic medical records provided insight into contraception use and preconception care patterns, with analyses of trends and how long they were used over time. Interviews with 27 Aboriginal women offered qualitative insights into their experiences and perspectives on reproductive health. 

Key findings included high usage and acceptance of a single long-acting reversible contraception (LARC) method, the etonogestrel implant (Implanon®), though some women preferred a more discreet option. Most women (70%) used contraception aligned with their pregnancy intentions, although some felt ambivalent about future pregnancies or reported partner pressure to discontinue contraception. While antenatal care uptake was strong, preconception care delivery was suboptimal, particularly in risk reduction and health promotion. Cultural safety emerged as critical, with culturally respectful care essential to high-quality reproductive health services. The research highlights the need for culturally appropriate, rights-based reproductive healthcare for Aboriginal women in remote areas.

Recommendations include integrating reproductive health into Aboriginal Community Controlled Health Services, emphasising cultural safety, and supporting health literacy. Tailored support for young women and those at risk of reproductive coercion, alongside the involvement of Aboriginal health professionals, is essential for effective, community-centred reproductive health interventions.

Team Members:

• Emma Griffiths, Julia Marley, David Atkinson - Rural Clinical School of WA, Broome
• Domenica Friello - Kimberley Aboriginal Medical Services, Broome

Plain Language Reports: Reproductive health in the Western Desert

Publications:

Griffiths EK, Marley JV, Friello D, Atkinson DN. Uptake of long-acting, reversible contraception in three remote Aboriginal communities: a population-based study. Medical Journal of Aust 2016; 205:21 25.  DOI:10.5694/mja16.00073

Griffiths EK, Atkinson DN, Friello D, Marley JV. Pregnancy intentions in a group of remote-dwelling Australian Aboriginal women: a qualitative exploration of formation, expression, and implications for clinical practice. BMC Public Health 2019; 19:568. DOI:10.1186/s12889-019-6925-8

Griffiths EK, Atkinson DN, Marley JV. Preconception Care in a Remote Aboriginal Community Context: What, When and by Whom? Int J Environ Res Public Health 2020,17(10),3702. DOI:10.3390/ijerph17103702

Get Involved: for further details, please contact Emma Griffiths: e[email protected]

Research Focus: Aboriginal Health, Chronic Disease Prevention, Workforce Development

Project Overview: Aboriginal people from several Kimberley communities requested support for implementing culturally secure lifestyle modification programs that foster internal motivation, enhance health knowledge, and modify health beliefs and risk perception. We co-designed, piloted and refined the ‘Be Healthy’ program with 110 Derby Aboriginal people. The 8-module program involves practical nutrition education, discussion of chronic diseases, cooking, stress management and group physical activity. Content is tailored to local culture and younger age (15-40 years) and delivered by Aboriginal Program Officers in a culturally secure, supportive and enjoyable atmosphere. The pilot program demonstrated acceptability, positive behaviour changes and proof of concept in a challenging setting. 

This project will empower Aboriginal people to increase exercise levels, improve nutrition and reduce obesity. It combines the power of research to drive evidence-based positive behaviour change with the wisdom, knowledge and cultural strength of Aboriginal communities, integrated with the major Kimberley healthcare providers.

This community-led initiative will be adapted using a similar co-design process with other Aboriginal communities, implemented on a large scale and evaluated. Through partnerships between Aboriginal organisations and academic researchers, the program will be culturally relevant, rigorously evaluated and embedded within the community for sustainability and will deliver short, medium and long-term health benefits.

Team Members: Erica Spry, Matt Lelievre, Julia Marley and Steve Pratt - Rural Clinical School of WA, Broome

Collaborators:

• Derby Aboriginal Health Service - Derby
• Djarindjin Aboriginal Corporation - Djarindjin
• Kimberley Aboriginal Medical Services - Broome
• West Australian Country Health Service - Kimberley
• Diabetes WA - Perth

Current Funding and Support: Stan Perron Charitable Foundation, National Health and Medical Research Council.

Plain Language Reports: Be Healthy - Plain Language Reports

Publications:

Seear KH, Lelievre MP, Atkinson DN, Marley JV. ‘It’s Important to Make Changes.' Insights about Motivators and Enablers of Healthy Lifestyle Modification from Young Aboriginal Men in Western Australia. Int J Environ Res Public Health 2019, 16:1063.  DOI:10.3390/ijerph16061063

Seear KH, Atkinson DN, Henderson-Yates LM, Lelievre MP, Marley JV. Maboo wirriya, be healthy: Community-directed development of an evidence-based diabetes prevention program for young Aboriginal people in a remote Australian town. Evaluation and Program Planning 2020, 81: 101818. DOI: 10.1016/j.evalprogplan.2020.101818

Seear KH, Atkinson DN, Henderson-Yates LM, Lelievre MP, Marley JV. Piloting a culturally appropriate, localised diabetes prevention program for young Aboriginal people in a remote town. Australian Journal  of Primary Health 2019, 25:495-500.  DOI:10.1071/PY19024

Seear KH. Supporting healthy lifestyle changes for type 2 diabetes prevention among young Aboriginal people in a remote Western Australian town. Doctoral Thesis, The University of Western Australia, 2020. DOI:10.26182/5e2a42c325ef2

Get Involved: For further details please contact Matt Lelievre: [email protected]

Research Focus: Aboriginal Young People, Health Services, Chronic Disease Screening and Management

Project Overview: Aboriginal young people are at an important stage in the development of their health and well-being. They face a disproportionately high burden of young onset T2D.  This is a form of disease that progresses rapidly and carries increased risks of complications. Most people do not know they have diabetes, and therefore, it is essential to check for it. While Aboriginal young people often experience poor health outcomes, they have low use of health care. 

Three related projects were explored: 

1. What helps or hinders Aboriginal young people in seeking health care,
2. Simplifying diabetes screening for Aboriginal young people (10–14-year-olds) and  
3. The experiences, challenges and support needs of Aboriginal young people living with diabetes.  

These three projects interviewed 33 Aboriginal young people aged 12-25 years (7 with diabetes), two carers of Aboriginal young people with diabetes, and 32 health professionals. 

In the first project key challenges included the need for local, long-term Aboriginal health professionals, gender-matching between staff and patients, maintaining confidentiality, and minimising the sense of ‘shame’ associated with seeking healthcare. The insights gained emphasised the importance of recruiting and retaining health professionals skilled in youth engagement and providing targeted health education that resonates with young Aboriginal people.  

In the second project, we piloted a new way of screening to see if we could simplify checking if Aboriginal young people had diabetes. This was similar to how adults are tested for diabetes (HbA1c test). Screening via finger-prick and venous blood tests increased significantly at the Aboriginal Community Controlled Health Service (36% during v 22% before the pilot) but not at the hospital (0.02% v 0.02%). Health professional feedback included needing to simplifying the clinical protocol even further, targeted screening of Aboriginal young people, patient and staff education, finger-prick HbA1c tests, and a whole-of-clinic approach to implementation. 

In the third project, young participants with T2D expressed a range of emotional responses to their diagnosis, from sadness and confusion to a limited understanding of the disease itself. Challenges in managing diabetes were compounded by gaps in knowledge and the difficulty of adhering to lifestyle recommendations. Family members emerged as crucial to self-management. Young people also valued strong, ongoing relationships with health professionals, which improved their engagement with care. Continuity of care from a young person to a young Adult was also requested by young people with T2D. This research underscores the need for family-centred, culturally safe models of care that offers accessible, localised health education and resources to support young people with diabetes.      

Impact:

• Kimberley Clinical Protocols: Type 2 Diabetes in Children. This was updated in 2021 to include finger-prick HbA1c tests.  
• Culturally appropriate initiatives, such as the “Be Healthy, Be Anything” social media campaign in Derby, designed to promote healthy lifestyles and prevent chronic disease in remote Aboriginal communities. 

Team Members: 

• Erica Spry – Rural Clinical School of WA and Kimberley Aboriginal Medical Services, Broome
• Julia Marley and David Atkinson - Rural Clinical School of WA, Broome
• Susannah Warwick - Rural Clinical School of WA, Derby and Derby Aboriginal Health Service
• Andrea Manifold and Kimberley Seear – Rural Clinical School of WA, Derby
• Tracey Kitaura and Matthew Le Lievre – Derby Aboriginal Health Service
• Kimberley Seear, Vicki O’Donnell and Sally Singleton – Kimberley Aboriginal Medical Services
• Ben Harkin, Lydia Scott and Gavin Cleland – WA Country Health Service, Broome
• Paula Edgill – Derbarl Yerrigan Health Service and Centre for Aboriginal Medical and Dental Health, UWA Perth
• Renae Kirkham and Louise Maple-Brown – Menzies School of Health Research, Darwin 
  

Plain Language Reports: Kimberley Young People Plain Language Reports

Publications:
Warwick S, Atkinson D, Kitaura T, LeLievre M, Marley JV. Young Aboriginal People's Perspective on Access to Health Care in Remote Australia: Hearing Their Voices. Prog Community Health Partnership 2019.DOI:10.1353/cpr.2019.0017

Warwick S, LeLievre M, Seear KH, Atkinson D, Marley JV. Above and Beyond: Fashioning an Accessible Health Service for Aboriginal Youth in Remote Western Australia. Prog Community Health Partnership 2021, 15:e7. DOI:10.1353/cpr.2021.0049

Warwick, S. Accessible health care for Aboriginal young people in remote Australia. Master's Thesis, The University of Western Australia, 2021. DOI:10.26182/ax1g-s033

Manifold A, Atkinson D, Marley JV, Scott L, Cleland G, Edgill P, Singleton S. Complex diabetes screening guidelines for high risk adolescent Aboriginal Australians: a barrier to implementation in primary health care. Aust J Primary Health 2019, 25:501-508. DOI: 10.1071/PY19030

Spry E, Seear K, Harkin B, O'Donnell V, Maple-Brown L, Atkinson D, Kirkham R. Aboriginal young people's experiences of type 2 diabetes diagnosis, management and support: A qualitative study in the Kimberley region of Western Australia. Health Promotion J Aust 2025, 36(2):e919. DOI: 10.1002/hpja.919

Get Involved: for further details on each project, please contact the following researchers:

• Project #1: Susannah Warwick: [email protected]
• Project #2: Julia Marley:  [email protected]
• Project #3: Erica Spry: [email protected]  or [email protected]

Research Focus: Mindfulness, Medical Education

Project Overview: This PhD project investigates how online mindfulness training can enhance the wellbeing of Medical students, especially those in rural areas with limited access to in-person resources. Drawing from her experience as a rural GP and medical educator and inspired by the benefits she found from practising mindfulness, Dr Sarah Moore developed an 8-week online program designed specifically for time-pressed medical students. The program includes brief video lessons and 5-minute guided meditations aimed at reducing stress and boosting mindfulness, self-compassion, and engagement with studies.

A pilot study and randomised control trial revealed that students in the program experienced notable improvements in mindfulness compared to those in a control group. Importantly, students who focused on the benefits of mindfulness were more likely to stay engaged, while those facing barriers, like limited time or procrastination, often disengaged. These findings suggest that targeted support could help students overcome challenges and maintain their practice. The ultimate aim of this research is to make mindfulness training universally accessible to medical students, promoting better wellbeing and a more balanced approach to both personal and academic demands.

Team Members:

• Sarah Moore, Rural Clinical School of WA, Busselton
• Nahal Mavaddat and Helen Wilcox - UWA Medical School, Perth
• Kirsten Auret - Rural Clinical School of WA, Albany
• Hanh Ngo and Beatriz Cuesta Briand - Rural Clinical School of WA, Perth
• Craig Hassed and Richard Chambers – Centre for Consciousness and Contemplative Studies, Monash University, Melbourne
• Craig Sinclair – UNSW School of Psychology, Sydney
• Rita Barbour – ECU School of Nursing, Bunbury

Media:

Sarah Moore, Three Minute Thesis (3MT) 2024 presentation: Online Mindfulness Training for Medical Students & Junior Doctor Wellbeing 

Publications:

Moore S, Barbour R, Ngo H, Sinclair C, Chambers R, Auret K, Hassed C and Playford D. Determining the feasibility and effectiveness of brief online mindfulness training for rural medical students: a pilot study. BMC Medical Education 2020, 20, 1-12. DOI:10.1186/s12909-020-02015-6

Moore S, Mavaddat N, Auret K, Hassed C, Chambers R, Sinclair C, Wilcox, H and  Ngo H. The Western Australian Medical School mindfulness project: a randomised controlled trial. BMC Medical Education 2024, 24(1), 1182.  DOI: 10.1186/s12909-024-06128-0

Get involved: For further details please contact Sarah Moore at [email protected]

Research Focus: Palliative Care, Community Engagement, Voluntary Assisted Dying

Project Overview: Following the enactment of the 2019 VAD Act, RCSWA and Albany Community Hospice investigated community and stakeholder views on how the Hospice might incorporate Voluntary Assisted Dying (VAD) into its care offerings.

Part 1 – Stakeholder Engagement: 63 participants (community members, staff and volunteers) were involved in focus groups to explore the Hospice’s potential roles in VAD, ranging from non-involvement to full engagement. Participants discussed scenarios highlighting varied perspectives on how the Hospice could balance community expectations, compassionate care and organisational philosophy. Key themes emerged, revealing support for patient choice in end-of-life care alongside concerns about preserving the Hospice as a safe and respectful space. While participants valued Hospice’s compassionate environment, opinions varied on how much it should support VAD. Some community members believed that hospice involvement in VAD would improve local accessibility, while others worried it might detract from the hospice’s nurturing role.

Part 2 – Board Decision-Making: The Board considered the VAD decision over 10 meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from the focus groups, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. They experienced a sense of journey in reaching an overall decision: starting from a personal view; moving to a hospice perspective; exploring if VAD can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. The final decision was to allow full participation in VAD provision for inpatients.

Part 3 – Experiences of Providing VAD: 30 Hospice staff members took part in a survey and 10 were interviewed. While most survey respondents had been involved in voluntary assisted dying, only 7 reported that their day-to-day role had changed. Supporting patient choice and autonomy were the most cited benefits of the introduction of voluntary assisted dying. The main themes from the interviews were that everyone is involved with patients accessing VAD and nothing changes but everything changes. The study highlighted the importance of the Hospice fostering a transparent decision-making process that honours both patient choice and diverse community perspectives.

Team Members:

• Kirsten Auret and Terri Pikora - Rural Clinical School of WA, Albany
• Kate Gersbach - Albany Community Hospice, Albany
• Christine Grogan - UWA Albany 
• Beatriz Cuesta-Briand - Rural Clinical School of WA, Perth 

Funding and Support: Brandenburg Trust and Albany Community Hospice, Albany, WA.

Publications: 
Auret K, Pikora TJ, Gersbach K, Donovan RJ. "Respecting our patients' choices": making the organizational decision to participate in voluntary assisted dying provision: findings from semi-structured interviews with a rural community hospice board of management. BMC Palliative Care 2022, 21:161. DOI:10.1186/s12904-022-01051-x

Auret K, Pikora T, Gersbach K. Being a safe place: a qualitative study exploring perceptions as to how a rural community hospice could respond to enactment of voluntary assisted dying legislation. BMC Palliative Care 2022, 21:2. DOI:10.1186/s12904-021-00891-3  

Get Involved: For further details, please contact Albany Community Hospice: [email protected]

Research Focus: Palliative Care

Project Overview: Motor Neurone Disease (MND) is a progressive and incurable neurological condition marked by rapid symptom progression and a limited life expectancy, often averaging 2–3 years post-diagnosis. While palliative care is critical for managing symptoms and supporting both patients and carers, MND patients and their families face significant barriers in accessing and receiving quality end-of-life care (EOLC). This study collected qualitative data from 29 carers (both current and bereaved) of people with MND across Western Australia to understand their experiences, challenges and perceptions of EOLC services.

Caregivers reported emotional strain, inadequate service coordination, and variable levels of professional knowledge and empathy in MND care. Many carers felt poorly supported in managing complex care needs and bereavement, highlighting the need for a structured, integrated approach to EOLC.

The study advocates for a shift towards a public health palliative care approach that leverages local community resources and partnerships to support patients and families in their journey, proposing models like the "Compassionate Communities Connectors" for greater social support. Project findings will inform the development of sustainable, inclusive palliative care models that align with the evolving needs of MND patients and their families. 

Project Team Members:

• Vivek Velaga - UWA Medical School, Perth
• Angus Cook - UWA School of Population and Global Health, Perth
• Kirsten Auret - Rural Clinical School of WA, Albany
• Tom Jenkins - St John of God Midland Hospital, Midland
• Geoff Thomas - Thomas MND Research Group, Blackwood SA
• Samar Aoun - Perron Institute for Neurological and Translational Science and UWA Medical School, Perth

Publication: Velaga, VC, Cook A, Auret K, Jenkins T, Thomas G, Aoun SM. Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions. Brain Sciences 2023, 13, 920.  DOI: 10.3390/brainsci13060920

Get Involved: please contact Kirsten Auret: [email protected] 

Research Focus: Health Services, Palliative Care

Project Overview: Advance care planning is a process of discussing goals for future health care, in case of a time, in which, a person is unable to make decisions or speak for themselves. It can include the completion of written advance care directives, including a person’s wishes for their future healthcare (Advance Health Directive) or nomination of a substitute decision-maker (Enduring Power of Guardianship).

This trial investigated whether a nurse-led approach to advance care planning was helpful for people diagnosed with severe respiratory disease, as well as their family members. The nurse’s job was to explain advance care planning to the patient and their family member/s, and to assist them in making plans for their future healthcare.

One hundred forty-nine participants were recruited for this trial. Participants were invited to give consent for random allocation to the intervention group (nurse-led advance care planning: 45 participants) or the usual care group (22 participants). However, if they had strong preferences to receive (61 participants), or not receive (21 participants) the intervention, they were allocated to their preferred group.

Participants allocated to receive the intervention were more likely to have completed formal advanced care planning documents at six-month follow-up (51%) than those allocated to usual care (14%). Those in the intervention group were also more likely to have had advance care planning discussions with their doctor (72%) than those allocated to usual care (47%).

Those with more severe symptoms and those with a pre-existing preference to be allocated to the intervention were more likely to undertake advance care planning. Those with higher social support (i.e. more support from close family and friends) were more likely to discuss advance care planning with their loved ones. There were no documented adverse effects of the intervention, and participants did not experience any decreases in satisfaction with healthcare or health-related quality of life.

Based on these findings, we believe that a nurse-led approach is an effective means of facilitating advanced care planning among patients with severe respiratory disease in a range of settings.

Our ongoing work has focused on improving the systems for receiving, storing and communicating advance care planning documents to ensure that patients can receive healthcare consistent with their wishes.

Team Members:

• Kirsten Auret, Craig Sinclair, Fiona Williamson - Rural Clinical School of WA, Albany
• Sharon Evans - Rural Clinical School of WA, Perth 
• Siobhan Dormer and Fraser Brims - Respiratory Department, Sir Charles Gairdner Hospital, Nedlands
• Anne Wilkinson - School of Nursing and Midwifery, Edith Cowan University, Joondalup
• Kim Greeve and Audrey Koay - Department of Health WA, Cancer and Palliative Care Network, Perth
• Dot Price - WACHS District Health Advisory Committee, Albany

Funding and Support: This work was supported by a grant from the WA Health Department State Health Research Advisory Committee.

Publication: Sinclair C, Auret KA, Evans SF, Williamson F, Dormer S, Wilkinson A, Greeve K, Koay A, Price D, Brims F. Advance care planning uptake among patients with severe lung disease: a randomised patient preference trial of a nurse-led, facilitated advance care planning intervention BMJ Open 2017, 7:e013415. DOI: 10.1136/bmjopen-2016-013415

Get Involved: please contact Kirsten Auret: [email protected]