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Symposium: Building community capacity in paediatric palliative care, end of life and bereavement care

ABSTRACT ONE: Ms Angela Delaney

ABSTRACT TWO: Dr Leigh Donovan

ABSTRACT THREE: Dr Kate Hetherington

ABSTRACT FOUR: Ms Nicola Morgan

It is estimated that there are 32 per 10,000 children aged 0-19 years in Australia living with a life limiting condition (LLC) who could benefit from a palliative approach to care. Further, there is one child death for every sixty adult deaths in Australia. The uniqueness of caring for a dying child and a family who has suffered the death of a child means many families in Australia struggle to access the right care and support, in the right place, at the right time. The Quality of Care Collaborative Australia (QuoCCA), Paediatric Palliative Care Service (PPCS) Children’s Health Queensland (CHQ), Behavioural Sciences Unit Sydney Children’s Hospital, University of New South Wales and Redkite have worked collaboratively to address gaps in service delivery, enhance capability of health and social care professionals, deliver education and build community capacity in responding to the long term needs of children with a life limiting condition and bereaved families. This symposium will present four national ‘big impact’ practice interventions each embedded in a capacity building framework. Quality of Care Collaborative Australia (QuoCCA) Good Grief This Hurts: Building community capacity around child death Supporting parents bereaved as the result of childhood cancer: Development and evaluation of the ‘By My Side’ book Walking Alongside: developing a guide for health professionals caring for a dying child Each of these practice interventions demonstrates an innovative response to addressing large scale need. We believe these interventions can translate broadly into how the Australian community responds to the care of the dying and bereaved.


Title: Quality of Care Collaborative Australia (QuoCCA): for paediatric palliative care

Background: Children and young people have unique needs in relation to the provision of palliative care within Australia. Geography and population distribution present challenges for health care professionals (HCP) delivering home based palliative care. Through a federally funded grant the Quality of Care Collaborative Australia (QuoCCA), a collaboration of inter-disciplinary specialist paediatric palliative care (PPC) services across Australia, was initiated to address the unique needs of children, their families and the HCPs caring for them.

Aims /Purpose: To achieve quality service improvement in national paediatric palliative care in acute and community settings through education initiatives. To build the capacity of health care professionals to provide PPC in metropolitan, regional, rural and remote locations across Australia, whilst raising awareness of the benefits of timely referral to PPC services.

Design / Approach: Specialist PPC clinician(s) offer flexible ‘in time’ education, and support to health care professionals (HCP) caring for children with life-limiting conditions referred to palliative care. Educators developed innovative multi-disciplinary sessions to address gaps identified through audit and learning needs analysis. Education can be a scheduled local session, or when specific to a patient (termed “Pop-up”) the can include local community service providers. Knowledge and confidence across care domains are evaluated with pre-post surveys completed by participants.

Results / Findings: Data from the project (2015-2017) demonstrated significant increase in HCP confidence across all domains post education. Education needs to be applicable to an inter-disciplinary audience. Funding was extended until 2020.

Conclusions and application to PHPC Children with life-limiting conditions should have the right to receive quality Paediatric Palliative Care, regardless of what state or territory they live. The opportunity to upskill through planned and co-ordinated national education will assist in building capacity of those providing care and shows promise in increasing capacity for paediatric palliative care within Australia.


Title: Good Grief This Hurts: Building community capacity around child death

Background: Children with a life limiting condition routinely access specialist health care at one of the nine tertiary children’s hospitals in Australia. When a child dies, parents often describe a sense of abandonment from their child’s treating team and isolation as their community struggles in acknowledging death and dying as a source of common humanity.

Aims: In 2019 the Quality of Care Collaborative Australia (QuoCCA) in collaboration with the Paediatric Palliative Care Service (PPCS) Children’s Health Queensland (CHQ) reached out into regional communities across Queensland to build a conversation around ‘What death and dying looks like in your community’ and ‘How we can work together to build capacity around child death’.

Actions: A pilot event will take place in Rockhampton in March 2019. A champion in the Rockhampton community provided a local perspective on ‘the issue’. Over 20 organisations were invited to participate in a conversation with bereaved family members. A journey mapping activity guided by bereaved parents will identify the ‘roses, buds and thorns’ throughout their experience of their child dying and their family’s bereavement. Group Facilitators will then work with participants to identify ‘What is working well’ and ‘What can we do better’. The group will identify methods for keeping connected beyond the event with the aim to enhance pathways of support for families following the death of their child.

Outcomes: The conversation will be harvested by facilitators post-event and returned to all participants. Facilitators will build on the outcomes and learnings of this event prior to rolling out community capacity building events to eight CHQ Health Service districts.

Conclusions and application to PHPC: A Compassionate Communities (CC) approach acknowledges death, dying and bereavement as a universal human experience. This project draws on the principals of CC to build capacity throughout Queensland communities to ensure bereaved families are acknowledged and care for following the death of their child.


Title: Supporting parents bereaved as the result of childhood cancer: Development and evaluation of the ‘By My Side’ book

Background: The death of a child to cancer represents a profound and devastating loss. In 2012 our team launched ‘Compass’, Australia’s largest study of the needs and experiences of bereaved families following the death of a child from cancer. A critical theme identified in Compass was the importance of peer support in the lives of bereaved parents as ‘these are the only people who truly get it’. In response, we developed the By My Side resources, including a book and award-winning video, which share the stories of bereaved parents with the aim of normalising parents’ grief experiences and reducing their sense of isolation.

Aims: We recently completed an evaluation of the ‘By My Side’ book, examining its acceptability, usefulness and impact using feedback from bereaved parents and health care professionals (HCPs).

Design/Approach: We used a mixed methods survey distributed to individuals who had ordered the book. Bereaved parents (n=24) and health care professionals (n=7) participated. Results/Findings Most parents thought the book’s length (91.7%) and the amount of information contained was ‘just right’ (83.3%). 75% of parents reported that the book made them feel that their reactions to the death of their child made sense. Parents reported experiencing both positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). 83.4% of parents indicated that they would recommend the book to other bereaved parents. All HCPs thought that the book provided useful information about grief and most would recommend it to bereaved parents (71.4%).

Conclusions and application to PHPC: The ‘By My Side’ book was acceptable and useful to bereaved parents and HCPs. Results suggest that peer-support in written form can help normalise aspects of grief and connect and comfort parents bereaved by childhood cancer.


Title: Walking Alongside: developing a guide for health professionals caring for a dying child

Background: This audio-visual resource emerged from the University of New South Wales mixed-methods 'Compass' study (2012-2016) which explored the experiences of parents whose child had died from cancer in Australia. Parents spoke about the trusted relationships they built with health professionals who ‘became like family’ throughout their child’s cancer care trajectory. Parents also noted times when they found these relationships to be lacking, and the long-term impact of lack of support when their child died. Importantly, parents valued relationships with a variety of medical and allied health practitioners at all stages from diagnosis into bereavement.

Aims: The Walking Alongside resource is designed to support health professionals to reflect on their role in families’ lives following a diagnosis of childhood cancer. The resource is intended for health professionals who do not regularly encounter paediatric patients with life-limiting conditions, or paediatric deaths, and may find interactions confronting.

Actions: A focus group was convened, comprising 10 diverse health professionals with extensive experience caring for children and families from diagnosis through treatment, palliation and bereavement. The group discussed the ‘Compass’ study findings and responded to questions about how they engaged with families. Their insights were thematically analysed and translated into the Walking Alongside video. The results of the thematic analysis also informed the development of an accompanying worksheet entitled Conversation Starters.

Outcomes: A 4:38 minute animated video and accompanying worksheet have been professionally produced and are freely accessible online. The resources are being disseminated through email marketing, social media campaigns and conference presentations. An evaluation of the resource is underway.

Conclusions and application to PHPC: Resources such as Walking Alongside can be used by educators to assist health professionals to understand the impact of their role and behaviours when working with children with cancer and their families, from diagnosis onward.

Earlier Event: October 16
Plenary 6
Later Event: October 16
Concurrent Session (Auditorium)