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.

Project 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.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

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

 Current funding and support:

National Health and Medical Research Fund [NHMRC]
2015-2019 (five years) $1.97 million.

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. https://doi.org/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. 2020 https://doi.org/10.1002/hpja.375

Ray James Award - Australian Health Promotion Association

Get Involved: 

For further details, please contact Steve Pratt: steve.pratt@rcswa.edu.au 

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.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

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:

Prof Julia Marley, Bardi Jawi Traditional Owner Erica Spry RCSWA Broome, WA.

Dr Emma Jamieson RCSWA Bunbury, WA.

Location: ORCHID Study sites are in the following regions: Kimberley, Midwest, Southwest, Great Southern and the Goldfields.

Current funding and support: $4 M (MRFF and FHRI) to 2027

We thank all partner health services for their significant in-kind contributions and previous funding from:

RCSWA

Lishman Health Foundation

Diabetes Australia

Diabetes Research Western Australia

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. https://doi.org/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. https://doi.org/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 Clin Transl Endocrinol 2021; 23:100247. https://doi.org/10.3390/ijerph16224488

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 Res Clin Pract 2021; 176:108868. https://doi.org/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 with remote testing and a pragmatic solution to improve accuracy. Diabetes Care 2021; 44:e4-e5. https://doi.org/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. Prim Care Diabetes 2021; 15:995-1001. https://doi.org/10.1016/j.pcd.2021.09.011

Jamieson E. PhD Thesis. Developing algorithms to improve predicting the development of and screening for gestational diabetes mellitus in rural communities: The University of Western Australia; 2022. https://doi.org/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. Clin Biochem 2023; 115:33-48; https://doi.org/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 Promot J Austral. 2024;899. https://doi.org/10.1002/hpja.899

Get Involved:
For further details, please contact the ORCHID Study team orchid@rcswa.edu.au.

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 survival rates 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.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

Dr Emma Griffiths, Prof Julia Marley, David Atkinson, RCSWA, Broome, WA.

Domenica Friello, Kimberley Aboriginal Medical Services, Broome, WA.

Publications:

Griffiths EK, Marley JV, Friello D, Atkinson DN. Uptake of long-acting, reversible contraception in three remote Aboriginal communities: a population-based study. Med J Aust. 2016; 205:21-25. https://doi.org/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. https://doi.org/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; DOI 10.3390/ijerph17103702. https://doi.org/10.3390/ijerph17103702

Get Involved (More Information): For further details, please contact Emma Griffiths ( emma.griffiths@rcswa.edu.au ).

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 codesigned, 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 codesign 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.

Researchers

Professor Julia Marley, Erica Spry, Steve Pratt, Matt Lelievre RCSWA, Broome

Collaborators

Derby Aboriginal Health Service (DAHS), Derby,WA

Djarindjin Aboriginal Corporation (DAC), Broome, WA.

Kimberley Medical Service (KAMS), Broome, WA

West Australian Country Health Service (WACHS), Kimberley,WA.

Diabetes WA, Perth, WA.

Funders

Stan Perron Charitable Foundation, National Health and Medical Research Council

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. https://doi.org/10.3390/ijerph160610633

Seear K, 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. Eval Program Plann 2020; 81: 101818. https://doi.org/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. Aust J Prim Health 2019; 25:495-500. https://doi.org/10.1071/PY19024

Kimberley Seear, PhD thesis: Supporting healthy lifestyle changes for type 2 diabetes prevention among young Aboriginal people in a remote Western Australian town: The University of Western Australia; 2020. https://doi.org/10.26182/5e2a42c325ef2

Get involved (More information)
See links for papers and plain language reports
For further details please contact Matt Lelievre matt.lelievre@rcswa.edu.au .

Research Focus: Aboriginal young people, health services research, chronic disease screening and management

Project Overview:

Aboriginal young people are at an important stage in the development of their health and wellbeing. 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 important to check for it. While Aboriginal young people often experience poor health outcomes they have low use of health care.

Three related projects 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 3 projects interviewed 33 Aboriginal young people aged 12-25 years (7 with diabetes), 2 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, as well as providing targeted health education that resonates with young Aboriginal people.

In the second project , to see if we could simplify checking if Aboriginal young people had diabetes, we piloted a new way of screening. 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 simplify 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, which often required support from family. 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 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

These findings informed:

• 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.

Researchers and Collaborators:

RCSWA: Erica Spry (Broome), Dr Susannah Warwick (MC and Masters’ student, Derby), Andrea Manifold (MD Student, Derby), Kimberley Seear (PhD Student, Derby), Professor David Atkinson (Broome), Professor Julia Marley (Broome)

Derby Aboriginal Health Service: Dr Susannah Warwick, Tracey Kitaura, Matthew Le Lievre

Kimberley Aboriginal Health Services: Erica Spry, Dr Kimberley Seear, Vicki O’Donnell, Dr Sally Singleton

WA Country Health Service: Dr Ben Harkin, Dr Lydia Scott, Dr Gavin Cleland,

UWA, Perth: Dr Paula Edgill

Menzies School of Health Research, Darwin: Dr Renae Kirkham, Dr Louise Maple-Brown

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; https://doi.org/10.1353/cpr.2019.0017

Warwick S, LeLievre M, Seear K, 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. https://doi.org/10.1353/cpr.2021.0049

Susannah Warwick. Accessible health care for Aboriginal young people in remote Australia: The University of Western Australia; 2021. https://doi.org/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 Prim Health 2019; 25:501-508. https://doi.org/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 Promot J Austr 2024. https://doi.org/10.1002/hpja.919

More Information:

See Links for plain language reports. For further details please contact:

Project #1: Susannah Warwick ( susannah.warwick@rcswa.edu.au );

Project #2: Julia Marley ( julia.marley@rcswa.edu.au );

Project #3: Erica Spry ( erica.spry@rcswa.edu.au , research@kamsc.org.au )

Research Focus: Mindfulness, Medical Education

Project overview

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.

Researchers and collaborators

1. Sarah Moore – PhD Candidate, Rural Clinical School of WA, UWA Medical School, Busselton, WA.
2. Nahal Mavaddat - Coordinating PhD Supervisor, UWA Medical School, Perth,WA.
3. Kirsten Auret - PhD Supervisor, Rural Clinical School of WA, UWA Medical School, Albany, WA.
4. Hanh Ngo – PhD Supervisor, Rural Clinical School of WA, UWA Medical School, Perth,WA.
5. Craig Hassed – Centre for Consciousness and Contemplative Studies, Monash University, Melbourne, VIC.
6. Richard Chambers - Centre for Consciousness and Contemplative Studies, Monash University, Melbourne, VIC.
7. Craig Sinclair – UNSW School of Psychology, Sydney, NSW.
8. Helen Wilcox - UWA Medical School, Perth, WA.
9. Rita Barbour – ECU School of Nursing, Bunbury, WA.
10. Beatriz Cuesta Briand - UWA Medical School, Perth, WA.

Publication

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

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

Get involved (More information)
For further details please contact Sarah Moore at sarah.moore@rcswa.edu.au

Watch the 3MT video here: https://www.youtube.com/watch?v=UrlCWEUpBjE

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

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. This project involved 63 participants (community members, staff, and volunteers) 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. The findings provided direction for Hospice planning, emphasising the need for policies that carefully balance patient autonomy with staff and volunteer well-being. Recommendations included:

1. Developing clear communication strategies.
2. Enhancing community education on palliative care and VAD.
3. Implementing robust policies to maintain a safe, supportive environment.

The study highlighted the importance of the Hospice fostering a transparent decision-making process that honours both patient choice and diverse community perspectives.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

Professor Kirsten Auret, RCSWA Albany, WA.

Dr Terri Pikora, RCSWA Albany, WA.

Ms Kate Gersbach, Albany Community Hospice, Albany, WA.

Ms Christine Grogan, UWA Albany Centre, Albany, WA.

Ms Beatriz Cuesta-Briand, UWA Albany Centre, Albany, WA.

Funding

Supported by the Brandenburg Trust and Albany Community Hospice, Albany, WA.

Get involved:
For further details, please contact Albany Community Hospice at info@albanycommunityhospice.org.au .

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.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

Vivek C. Velaga, Medical School, UWA Perth, WA.

Professor Angus Cook, School of Population and Global Health, UWA Perth, WA.

Professor Kirsten Auret, RCSWA, Albany, WA.

Dr Tom Jenkins, St John of God Midland Hospital, Midland WA.

Geoff Thomas, Thomas MND Research Group, Phillip SA.

Professor Samar M. Aoun, Perron Institute for Neurological and Translational Science, Nedlands, WA.

Publication

1. Velaga, V.C., et al. "Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions." Brain Sciences 2023, 13, 920.10.3390/brainsci13060920

Get involved: For further details, please contact Kirsten Auret kirsten.auret@rcswa.edu.au .

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.

Investigators, researchers and collaborators (affiliation and title at the commencement of the research):

Professor Kirsten Auret, Craig Sinclair, Fiona Williamson, RCSWA Albany, WA.

Sharon Evans, RCSWA Urban, WA.

Siobhan Dormer, Respiratory Department, Sir Charles Gairdner Hospital, Nedlands, WA.

Anne Wilkinson, School of Nursing and Midwifery, Edith Cowan University, Joondalup, WA.

Kim Greeve, Department of Health, WA Cancer and Palliative Care Network, Perth, WA.

Audrey Koay, Department of Health, WA Cancer and Palliative Care Network, Perth, WA.

Dot Price, WACHS District Health Advisory Committee, Albany, WA.

Fraser Brims, Respiratory Department, Sir Charles Gairdner Hospital, Nedlands, WA.

Funding

This work was supported by a grant from the WA Health Department State Health Research Advisory Committee

Publication

Sinclair C, Auret KA, Evans SF, Fiona Williamson, Siobhan Dormer, Anne Wilkinson, Kim Greeve, Audrey Koay, Dot Price, Fraser Brims’.

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:
For further detail, please contact Kirsten Auret kirsten.auret@rcswa.edu.au .