Childhood dementia results from progressive brain damage and is caused by over 70 rare genetic disorders. Most children die before turning 18. Previous research established that families experiencing childhood dementia had challenges interacting with health and social care systems, expressing they 'do not fit’. 

 

Childhood Dementia Initiative (CDI) partnered with Nous Group to conduct targeted research in order to articulate and represent the ‘lived experience’ of families in their interactions with care and support services and identify the key challenges and opportunities for change. 

 

A convenience sample invited participation from parents subscribed to the CDI Family Advocate database. Semi-structured interviews were conducted via Zoom and facilitated by representatives from Nous. Interviews were recorded with the consent of participants and transcribed using Otter. Key themes were identified using thematic analysis.

 

Eight parents (8 mothers, n=5 caring; n=3 bereaved) consented to participate in an interview. Six themes emerged: 1. Conditions that cause childhood dementia are rare, difficult to diagnose and diverse, which results in delayed diagnosis, 2. Following diagnosis, there is no defined care pathway and parents find it difficult to navigate care and support to meet their child’s needs, 3. Parents become project managers for their child’s care, experiencing a high administrative burden, 4. Paediatric palliative care can fill a navigation and coordination gap but is not consistently accessed, 5. NDIS packages are essential support for families, but are universally challenging to access and manage, 6. Following the death of their child families find comfort in informal and formal supports, yet these can be difficult to access and sustain.

 

Families living with childhood dementia state they ‘do not fit’ in current care and support structures. This research will enable advocacy and systemic change to ensure appropriate, equitable and high-quality care for children and families affected by childhood dementia.

 

Background: Paramedics are a highly skilled and unique workforce, attending to patients in the community 24/7 across all locations. As global populations age and community preferences to die at home increase, new models of paramedic practice are required to respond to the growing needs of palliative care patients, especially out-of-hours. 

Aim: To explore the role of paramedics delivering palliative and end-of-life care in Australian communities and develop a palliative paramedicine framework suitable for national implementation. 

Methods: Four empirical studies were undertaken: (1) systematic integrative review; (2) comparative clinical practice guideline analysis; (3) qualitative interviews; (4) Delphi study.  

Setting, data collection and analysis: 22 studies were thematically analysed for the systematic review. Eight palliative care guidelines from Australian, New Zealand, UK and Canadian ambulance services were quality appraised and content analysed. 50 Australian paramedics’, palliative care doctors’ and nurses’, GPs’, residential age care nurses’ and bereaved family members’ experiences and perspectives were thematically analysed. Consensus regarding essential framework components was gained from 70 Australian and international palliative paramedicine experts. 

Results/findings: 

Participants reported and supported a role for paramedics in providing emergency support to patients approaching end-of-life, facilitating home-based deaths and reducing avoidable hospital admissions. They felt many existing paramedic skills can be leveraged to suit the palliative care context but reported challenges in this setting. Paramedics expressed vulnerability when taking this approach to care, and require additional training, support and clinical back-up. Components gaining consensus from the expert panel for inclusion in the framework will be reported. 

Conclusion/lessons learnt: Strong consensus exists amongst experts that a multi-faceted framework is required to address the structural, service, community and individual factors influencing practice. Implementing this framework, in partnership with ambulance services and the palliative care community, will aim to standardise best practice and strengthen a culture of interdisciplinary palliative care across Australia. 

Research indicates that if a patient receives the necessary levels of support in the last twelve months of their life, it will result in a significant impact on their quality of life and that of their family. Access to community-based home care services provides palliative care patients with the care and support to remain at home for as long as possible. The process to access can be time consuming, stressful, and funding is not routinely provided to those people who are palliative and under the age of 65. WA Country Health Services (WACHS) Palliative Care Program uses specific clinical criteria to assess for eligibility to access a Palliative Care Support Package (PCSP), for patients and carers/family. PCSPs can assist palliative care patients who do not qualify for, or do not have time to wait for, approvals from the National Disability Insurance Scheme (NDIS), the Commonwealth Home Support Programme (CHSP) or Home Care Packages (HCP’s).

Aim

The PCSP aims to provide holistic home care support within a responsive time frame and meet induvial needs. The program provides funding for up to six weeks. 

Services provided are:
·       Personal care
·       Social support
·       Respite care
·       Nursing care

The funding is for people who are approaching end of life and meet the following eligibility criteria:
·       Under the WACHS Specialist Regional Palliative Care Service
·       Too late to progress a timely application for a NDIS, CHSP and HCP package due to rapid deterioration
·       Children receiving palliative care
·       At risk of hospital or residential aged care admission due to no access to home care services
·       Waiting for a NDIS access decision, Ability First Access, or HCPs to commence.

Results

The packages commenced in February 2020 with over 270 PCSPs approved to date. The use of Palliative Care Outcomes Collaboration (PCOC) assessment tools ensures a multidisciplinary approach to measuring clinical care needs. Partnering with 14 community services has provided an effective use of the work force in seven regional areas. The average cost of the PCSPs delivered is $1820. Case studies analysis has demonstrated significant cost savings on reducing emergency department admissions and long hospital stays for palliative care patients substituted with receiving care and support at home. Data suggests that of the patients accessing PCSP; 80% have a carer, 61% are male and ages ranging from 5 to 93 years. The main presenting symptom is fatigue (41%), and 45% of patients are in a deteriorating phase.

Conclusion

The packages are innovative in rural Western Australia to assist with end-of-life care in the home and have demonstrated assistance with providing care in a responsive timeframe, reducing hospitalisations by providing the support the patient/carer needs in their own home. Future developments will be the creation of culturally appropriate Aboriginal Palliative Care Support Package and care delivery in remote towns.

Background. 

 

Public health approaches to palliative care have long promoted the contribution of formal and informal volunteering to providing effective end-of-life care in neighbourhoods and communities. A central strategy for this is a ‘compassionate communities’ approach that focuses on building care networks and developing community members’ capacities in end-of-life care. There is anecdotal evidence of differences in the motivations and life experiences of traditional palliative care volunteers and volunteers in compassionate community programs. There is however very little research into volunteers seeking a compassionate communities orientated role. This paper is part of a larger body of research by The South West Compassionate Communities Network (SWCCN) in Western Australia (WA) and the WA Country Health Service, designed to take an evidenced-based approach.  

 

 

Aim (or goal of work), 

This presentation will describe the qualities, skills and experiences of volunteers of potential compassionate communities connectors and outline the contrasting aspects between connector models and traditional palliative care volunteer models.

 

Methods (including design, method or approach taken, setting, data collection and analysis /evaluation approach as applicable), 

 

This qualitative investigation of responses to a questionnaire (EOI) using content analysis. Twenty people (16 female, 4 male) from the South West region of WA submitted an EOI to train as a Community Connector with the SWCCN. There were eleven questions in the EOI which elicited categorical and qualitative data. Following an initial review of the data, the categorical data were collated and tallied. Qualitative questions were analysed using content analysis, and themes were identified and coded.

 

Results/conclusions

 

Analysis indicated that the compassionate community connector role attracted experienced community volunteers who were already familiar with community services and end-of-life supports in their community, demonstrating a pre-existing understanding of the practical and emotional support families may need for end-of-life care. This presentation will discuss the distinct qualities of the Community Connector role, arguing that clarifying these characteristics will benefit new compassionate community initiatives and promote collaboration. 

For adolescent and young adult (AYA) cancer patients, clinical practice guidelines recommend specialised cancer care and timely engagement of supportive and palliative care, no matter the AYA’s cancer trajectory. Despite this, our comprehensive cancer centre had no AYA-dedicated cancer service, and of the 884 AYA referrals between January 2016 and January 2022, only 8.4% were referred for palliative care input.

Our quality improvement (QI) project’s primary aim was to increase referrals to our AYA Supportive and Palliative Care (SPC) Service from an average of one a month, to four a month, with secondary aims of increasing referral pathway confidence, and improving AYA health outcomes.

Methods:
The project was selected for the SPHERE-Stanford Quality Improvement Programme, which provided our multidisciplinary team with mentorship and evidence-based QI methodology training.

The project was run in a comprehensive cancer centre, over 18 weeks from June to November, 2022. A data manager provided AYA referral numbers to the centre at baseline and post-project commencement, and referrals to the AYA SPC Service were monitored by the project lead.

Using the intuitive A3 QI framework, the team identified simple interventions to achieve and sustain our target. These included collaborating with and educating stakeholders, improving centre-wide awareness of specialised AYA cancer care and the benefits of an AYA SPC referral, a streamlined referral process and a responsive model of care for AYAs.

Results:
Over 18 weeks, AYA SPC Service referrals exceeded the target, averaging five a month, with eight in the final month. Additionally, clinicians expressed greater confidence in referring to our service and collaborating in AYA care, and the project stimulated organizational level AYA advocacy.

Conclusions:
In a short timeframe and complex clinical environment, QI methodology helped articulate an innovative, sustainable approach to improving AYA cancer patients’ outcomes through better supportive and palliative care access.

 

Background: As technology proliferation into aged care sector continues at a rapid pace, there is value in exploring the role of innovative technologies to facilitate palliative and End of Life (EOL) care.  Developed in 2019, the ELDAC Digital Dashboard was integrated into the clinical data management systems of four Aged Care IT companies to demonstrate the feasibility of system integration. 

Aim: The aim of this study was to evaluate the merit and acceptability of the ELDAC Digital Dashboard used by RAC services connected to the four aged care IT systems

Method: Aged care services with access to the Dashboard were invited to take part in a three-month implementation evaluation trial. Each site was provided with an implementation support package which included: a dedicated Dashboard champion at each site, study team led dashboard training on dashboard use, Dashboard use guide and FAQs, and ongoing support to the site champion by the study team. Focus groups/interviews were held with nurses at each site before (pre-sessions) and after (post-sessions) the trial period. 

Results: 

 Fourteen RAC services were involved in the trial. 70 staff participated in the pre-sessions, and 42 participated in the post-sessions. Participants included RNs, ENs, CNCs, managers and careworkers. Qualitative findings indicated that the Dashboard was easy to use and helped nurses organise EOL care. Despite the challenging practice environment of aged care reform and time and resource constraints within facilities, the role of the dashboard in facilitating family conversations and enabling early EOL planning was valued. While variability in technology readiness was apparent and differences in how services used systems, the Dashboard filled a gap by providing both clinical and managerial utility. 

Conclusion: The use of ELDAC Digital Dashboard is feasible, acceptable, and value adding in the Australian residential aged care setting. 

Introduction
High quality end of life care involves addressing a patient’s physical, psychosocial, and spiritual needs and also
responding to family carer needs. Measuring the quality of care associated with dying and death is an
important component of health care and helps shape how care is delivered. Currently, it appears there is a lack
of evidence-based, systematic processes to examine the quality of dying and death of patients expected to die
from cancer in hospital settings.
Aim Develop a systematic appraisal framework (QualDeath) for reviewing the quality of dying and death for
patients with advanced cancer in the hospital.

Methods
(1) Explore the published evidence with regard to existing tools and processes related to appraisal of end of life
care via a rapid literature review; (2) Scope current practice in several major hospitals in Melbourne, Australia
with regard to existing processes related to appraisal of quality of dying/death via semi structured interviews
and focus groups with key stakehoders; (3) co-design QualDeath based on the aformentioned and workshop
and focus group with key stakeholders (hospital administrators, clinicians and consumers) to foster
acceptability and feasibility and reach consensus.

Results
We developed “QualDeath”: a framework to assist hospital administrators and clinicians to systematically review
the quality of dying and death for patients with an expected death from advanced cancer in hospital settings. It
offers four levels of potential implementation for hospitals to select from and incorporates medical record
review, multidisciplinary meetings, quality of end of life care surveys and bereavement interviews with family
carers.

Conclusion
The QualDeath framework provides relevant hospitals with recommendations to formalise processes to
evaluate end of life care. Although QualDeath was underpinned by several research methods we advocate
further research is conducted to rigorously explore its impact and test feasibility