Project Lead: Natalie Bradford 

Project Team: Melanie Rolfe, Gayani de Silva, Alison Bowers, Anthony Herbert

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Get Involved

This project will be asking for families and clinicians involved in paediatric palliative care to take part in online surveys and a workshop. Register for updates from the centre here.

 

Project Overview

This project is the foundational first step to address gaps in national paediatric palliative care research by establishing national research priorities in partnerships with consumers and clinicians. Online surveys will gather all ideas for research priorities, before these are checked against existing research, and prioritised using online surveys and a workshop.

 

A Steering Group of diverse professional and consumer stakeholders will oversee the priority-setting process. Survey rounds will be widely distributed to consumer groups, including with bereaved parents, through professional networks and social media.

Project Lead: Stuart Ekberg

Project Team: Bianca Warner

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Industry Partners

National Aboriginal and Torres Strait Islander Palliative Care Association Incorporated

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Get Involved

Email stuart.ekberg@flinders.edu.au for information on the study. 

 

​Project Overview​

Informed by the guiding principles described below, this project is designed to deliver an optimal care pathway for Aboriginal and Torres Strait Islander children with life-limiting conditions and their families. An established toolkit will be adapted to guide development and testing of this pathway. 

1. Specify the population: Informed by available data, develop consensus around developing a general pathway for children with life-limiting conditions or pathways focusing on specific subpopulations.  

2. Determine co-design representatives: Ensure diverse perspectives are included that are relevant to the focal population, clinical services caring for this population, community representatives, and cultural considerations.  

3. Identify best-practice and existing evidence: Review existing guidelines  and existing care pathways that may be transferrable to the target population 

4. Map service provision and identify areas for improvement: Employing established methods suitable for data generation in Aboriginal and Torres Strait Islander research, yarn with key Aboriginal and Torres Strait Islander and non-Indigenous informants from specialist paediatric palliative care services,  Aboriginal Community Controlled Health Organisations (ACCHOs) with child and maternal teams who are likely to have cared for children with life-threatening and life-limiting conditions.  

5. Develop care pathway: Invite key informants to a day-long workshop that will work to adapt existing relevant guidelines in relation to insights from yarns about service provision and area for improvement.

6. Test the optimal care pathway with a small number of families in a small number of services.  

7. Implement the optimal care pathway: Identify future opportunities to implement the optimal care pathway on a large scale nationally.  

Project Lead: Hannah Carter​

Project Team: Alison Bowers, Natalie Bradford, Melanie Rolfe, Helen Irving, PhD Student

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Get Involved

This project will be asking for families involved in paediatric palliative care to take part in interviews and online surveys. Register for updates from the centre here.

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Project Overview

This project will identify consumer preferences for key attributes within models of care. These empirically grounded preferences, will directly inform the development of innovative, family-centred integrated care models marking the first study of its kind in PPC with potential for international impact.  

 

To achieve this, we will conduct a Discrete Choice Experiment (DCE) to explore how consumers prioritise different elements of a model of care, when faced with competing options. The project will begin with a comprehensive literature review to identify attributes that are the most important to consumers accessing PPC. These attributes will then be refined and prioritised through qualitative interviews with a target sample of 15 caregiver participants.   

 

The final DCE survey will present participants with hypothetical care scenarios, each offering two choices that vary by specific attributes. Respondents will select their preferred option, allowing us to capture and quantify their preferences. We aim to recruit many participants with a target sample size of > 400, including parents whose child is currently receiving PPC, as well as bereaved parents.​

Project Lead: Stuart Ekberg 

 

Project Team: Diana Slade (ANU), Katie Ekberg (Flinders University), Natalie Bradford, Patsy Yates, Ursula Sansom-Daly, Liz Reymond (Metro South Hospital and Health Service), Anthony Herbert.

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Get Involved 

This project will be asking for clinicians in Queensland and New South Wales involved in paediatric palliative care to support recruitment of suitable families. Register for updates from the centre here.

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Project Overview

This project aims to understand how people discuss and document advance care plans. The project will be grounded in real-world and routine practice by video recording conversations where advance care planning occurs in palliative care and other health services, and analysing advance care planning documents associated with these conversations. This approach has been selected to overcome the limitations of data collected through self-report. Video recording enables close, repeated, and verifiable analysis incorporating information about verbal communication, non-verbal communication (e.g., gesture, posture, facial expressions), and the broader context (e.g., when someone enters or leaves a room).

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Commencing 2027

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Project Lead: Stuart Ekberg ​

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Project Overview

A key challenge for translating knowledge from communication research is evidence-based recommendations cannot be prescriptive because conversations about serious illness rarely – if ever – follow a script (Ekberg et al., 2021). To enhance translation of communication research to optimise communication with and about children who are seriously ill, this project will utilise an approach known as Reflective Interventionist Conversation Analysis, or ‘RICA’ (O’Reilly et al., 2020). Integral to this approach is partnership – in this case between consumers, clinicians, and communication scholars – to develop, implement, and refine a communication intervention – in this case, one suitable for care delivered to seriously ill children and their families. Consistent with RICA methods, the project will use direct observations of clinical practice to focus stakeholders on developing an intervention that is both feasible to implement and has been shown to promote meaningful outcomes.

Project Lead: Sid Vemuri 

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Get Involved 

This project will be asking for clinicians involved in paediatric palliative care to support recruitment of suitable families. Register for updates from the centre here.

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Project Overview

Decisions about whether or not to embark or continue life-prolonging treatments for children with life-limiting conditions remain the most challenging in clinical practice. While children are invited to participate in this decision-making, the extent of their participation is influenced by their developmental capacity. More often, their involvement is insufficient to be determinative for these treatment decisions. As a result, these decisions are commonly made by their parents and paediatricians. Parents voice greater satisfaction when involved in this decision-making, however, the specifics of what involvement entails remains unknown. Certainly, parents are involved in both interpretive and directed decision-making but while the nature of their involvement varies between these two approaches, it is uncertain whether this variation is perceived by parents (and if not, whether this matters).  

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This project will use real-world data about how diagnostic and prognostic information is provided by paediatricians and perceived and understood by parents, and the influence this has on subsequent communication encounters. In so doing, it seeks to identify how the advance care planning process and end-of-life decision-making occurs in current clinical practice in children with high-risk brain tumours and severe neurodisability, and seeks to compare the influence of standardisation of the advance care planning process of end-of-life decisions and family experience compared to standard care. 

Project Lead: Ursula Sansom-Daly

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Project Team: Holly Evans, Madeleine Juhrmann,  Rachel Callander, Bronwyn Sacks, PhD student. 

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Get Involved

This project will be asking for young people, families, and clinicians involved in paediatric palliative care to take part in interviews and surveys. Register for updates from the centre here.

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Project Overview

This project will develop an adapted Australian version of the existing American My Wishes advance care planning tool for paediatric populations. The adaptation, which will be created in collaboration with Australian young people, families, and healthcare professionals, seeks to foster constructive conversations between children, parents and the clinicians who care for them about the care they wish to receive. Assuring high feasibility, we (CI Sansom-Daly) have previously completed research adapting ‘Voicing My Choices’, a similar resource developed for adolescents and young adults in the Australian context. Following a similar Delphi-informed methodology, we will use mixed methods with three key participant groups: children with serious illness (e.g., cancer), parents of children with life-limiting conditions, and clinicians caring for these families. To determine aspects of the resources that require adaption or removal, we will conduct survey rounds and interviews using cognitive think-aloud methodology. Participants will provide feedback on the relevance and appropriateness of various components of ‘My Wishes’ for the Australian context. The benefit and burden of each item will be interrogated for relevance using multiple choice questions with Likert scales. Consensus for the final version will be determined through survey rounds which will continue until >75% of respondents agree the adaption of ‘My Wishes’ is appropriate for the Australian context. A broader survey will then be distributed to consumers through community support groups and hospital databases to identify the appropriate timing for introducing the adapted resource to children and families. Additionally, resources (e.g., videos, and pamphlets) will be developed to support families to engage with the resource. Follow-up interviews will be completed with consumers and clinicians to identify the appropriate timing to receive the different parts of the tool, from whom and in what ways, as well as how the adapted My Wishes will fit with current care and existing tools/resources.  

Project Lead: Ursula Sansom-Daly

​Project Team:  

CIs: Ursula Sansom-Daly, Kate Hetherington (UNSW), Joanna Fardell (UNSW), Reema Harrison (Macquarie Uni), Antoinette Anazodo (Sydney Youth Cancer Service), David Ziegler (Kids Cancer Centre), Anthony Herbert, Natalie Bradford, Mark Thomas (UTS), Lori Wiener (NCI, USA), Abby Rosenberg (Dana-Farber Cancer Institute), Natalie Taylor (UNSW), Jenny Hynson, Ruwanthie Fernando (Liverpool Hospital), Jessica Ryan (Sydney Youth Cancer Service).  

Ais: Holly Evans, Claire Wakefield (UNSW), Meera Agar (UTS), Tim Luckett (UTS), Richard Mitchell (Kids Cancer Centre), Vivek Bhadri (Chris O’Brien Lifehouse), Susan Trethewie (Sydney Children’s Hospitals Network), Nicole Armitage (Sydney Children’s Hospitals Network), Martha Mherekumombe (Children’s Hospital at Westmead), Rick Walker (Queensland Youth Cancer Service), Adry Awan (Lived experience investigator), Kate Wright (Lived experience investigator), Mark Donoghoe (UNSW), Medeleine Jurhmann (UNSW). 

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Get Involved

This project will be asking for young people, families, and clinicians involved in paediatric palliative care to take part in co-design. Register for updates from the centre here.

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Project Overview

We will improve quality of care and patient quality of life through implementing a model of person-centred palliative care, using a feasibility (pilot) stepped-wedge trial. This innovative trial design enables healthcare questions to be answered in a pragmatic way in real-world settings, and is the ideal design to test team- and system-level interventions when i) there is strong evidence of likely benefit, but about which there is more to learn; and ii) it is not possible to ‘turn off’ the intervention (e.g., for teams to ‘un-learn’ training). Clusters (here, six separate hospital sites) all start in the control condition, while usual care data is collected. Clusters transition to the intervention phase in a staggered (randomised) way, with all clusters receiving the intervention by trial’s end. This trial design allows careful study of the feasibility, acceptability, and efficacy of our new Model of Care (MoC), whilst gathering crucial feasibility, sustainability and cost/resource data to inform national scaleup.

Our research will be guided by the Consolidated Framework for Implementation Research 2.0 (CFIR-2), a framework designed to ensure scientifically rigorous methods to achieve change, using a pragmatic approach appropriate to local contextual factors. In Phase 1 (Validation), we will develop and validate our MoC’s content and approach via co-design with end-users – young people, families, and health professionals. During this time, we will also observe usual practice in real-time, collecting baseline data across all six sites. In Phase 2 (Testing), we will test our MoC at each of the six hospitals, evaluating its feasibility, acceptability, association with quality-of-care outcomes, and quality of life for patients/families. In Phase 3 (Embedding), we will analyse the resource and healthcare costs involved in delivering the MoC. We will then use this cost data to inform scale-up workshops.

Commencing 2027

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Project Lead: Natalie Bradford

​Project Team:  Alison Bowers, Melanie Rolfe, Anthony Herbert, Patsy Yates

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Project Overview

This project will facilitate the implementation of relevant standardised measures into routine clinical practice to ensure consistent and comprehensive assessment and reporting of symptoms and service outcomes into practice.  

 

We will establish implementation strategies to integrate the Children’s Palliative Outcome Scale (C-POS) in Australian PPC services. The C-POS, originally developed in the UK, has undergone validation testing in Australia (CI Herbert) and offers a comprehensive assessment tool, including domains for symptom management, quality of life, and care coordination. It is the first outcome measure specifically designed for PPC and is unique in its consideration of parent preference in the context of babies and infants. The C-POS measures symptoms, emotions, goals, challenges, and family care burden as a holistic measure.  

 

We will use formal process evaluation and the Knowledge to Action Model to consider contextual variations with implementing- and responding to – the C-POS in routine practice.