I’ll now be tweeting from the first of three concurrent sessions today, sitting in on the first Paediatric #PalliativeCare session, chaired by Lisa Cuddeford from the WA Paediatric Palliative Care Service #21OPCC
First presenter is Adjunct. Assoc. Prof. Claire Treadgold @Starlight_star talking about ‘Rosie’s story’. Rosie is a palliative child with chronic kidney disease who was supported by the Starlight Moments program #21OPCC
@Starlight_star Sadly, Rosie died a month ago 😞 Claire says the family are happy to share Rosie's story #21OPCC
@Starlight_star Rosie was diagnosed with Bardet Biedl Syndrome, and went on to get chronic kidney disease #21OPCC. Her mum says "she was full of life" and a "great lover of unicorns"
@Starlight_star And particularly a love of lego - more on this later #21OPCC
@Starlight_star Starlight Moments developed after research to explore the needs of families with children who have #palliativecare needs. Small, positive moments to distract from serious life events #21OPCC
@Starlight_star Starlight Moments are small, ongoing moments, tailored to the family #21OPCC
@Starlight_star Rosie loved lego - Starlight Moments created a lego treasure hunt for Rosie and family to take part in during #COVID19 #21OPCC
@Starlight_star Lego treasure hunt designed with the whole family involved - it's not just about the patient, but whole family #21OPCC
@Starlight_star Self-care for parents important - Starlight Moments gives them an opportunity to do activities they may not otherwise #21OPCC
@Starlight_star Siblings can often fly under radar - Starlight Moments create special moments for siblings also, and recognise family milestones #21OPCC
@Starlight_star The impact of #COVID19 - added an extra layer of isolation for the family, who already were quite isolated #21OPCC. Starlight Moments put together happiness hampers to help get through #COVID19
@Starlight_star Starlight Moments program extended to a year post-bereavement to help support the family while grieving #21OPCC
@Starlight_star "Ultimately the program is all about making memories" - Claire. #21OPCC
@Starlight_star Second presentation in this session is by Angela Delaney & Penelope Slater @childhealthqld - they are talking about their research exploring the experiences of families who have received paediatric #palliativecare in Qld #21OPCC
@childhealthqld What is Paediatric #palliativecare? Definition here #21OPCC
@childhealthqld One of the challenges delivering paediatric #palliativecare in Australia is the vast distance to services #21OPCC
@childhealthqld Research part of QuoCCA project (Quality Of Care Collaborative Australia (QuoCCA) Home_ #21OPCC
@childhealthqld They interviewed 11 parents of children with life limiting conditions who received paediatric #palliativecare #21OPCC
@childhealthqld Key findings from interviews incl: integration of child and family within health system inseparable, and informed decision making vital #21OPCC
@childhealthqld Two videos were developed based on the findings of the research #21OPCC - unable to share during presentation due to tech difficulties. I'll share links at the end of the session
@childhealthqld Third and final presenter in this session, @StuartEkberg @QUT is sharing key findings from a rapid review that helped inform a National Paediatric Palliative Care Action Plan for Australia. #21OPCC @Pall_Care_Aus
@childhealthqld @StuartEkberg @QUT @Pall_Care_Aus The plan follows from @Pall_Care_Aus being awarded funding for a Paediatric #palliativecare project #21OPCC
@childhealthqld @StuartEkberg @QUT @Pall_Care_Aus Paediatric #palliative care aims to improve the quality of life for families and children with life limiting conditions. Complex care. #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Specialist #palliativecare services needed due to complex needs of children with life limiting conditions. #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus 369 sources identified in the review (That is a lot of full-texts to read!) #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Key findings include: quality of specialist paediatric #palliativecare needs to be improved. Continuity of care one way care can be improved, and multidisciplinary approach another #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Improving advance care planning another key finding, can be done by early integration of specialist paediatric #palliativecare and patient and family focused interventions #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Limitations highlighted in optimal education approaches published in the literature - a focus on clinicians; and little rigorous evidence available #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus QuoCCA a key resource in Australia, with their aim to deliver education in paediatric #palliativecare #21OPCC quocca.com.au
@StuartEkberg @QUT @Pall_Care_Aus Inclusion of wide range of stakeholders important in paediatric #palliativecare, incl families (and siblings) #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Major findings from the literature review help inform policy with priority in improving paediatric #palliativecare. #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus Gaps in knowledge remain, including research about paediatric #palliativecare in Aboriginal and Torres Strait Islanders #21OPCC
@StuartEkberg @QUT @Pall_Care_Aus #21OPCC More info about the Paediatric Palliative Care Project can be viewed online @Pall_Care_Aus palliativecare.org.au/paediatric-nat…
@StuartEkberg @QUT @Pall_Care_Aus Q and A #21OPCC Paediatric #palliativecare session
Q for @stuartekberg- are there plans in place in the Northern Territory?
A - understanding is that it remains the case that families in the NT can access care in SA.
Q for Angela and Penelope - how did the families feel about the interviewing process? (sorry, not verbatim)
A - the families found the interview process therapeutic, valued telling their story
#21OPCC #qualitativeresearch
Q for Claire - is there a dedicated person for each family in Starlight Moments
A - one person starts off process of getting to know family really well, but is a collaborative process. Relationship with initial contact very important #21OPCC
The two videos developed from the findings of the QuoCCA research #21OPCC
Both beautiful - recommend viewing.
'Meeting Paediatric Palliative Care' vimeo.com/499870982
'Life with a child who has a life limiting condition' #21OPCC vimeo.com/499869110
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More from @CroakeyNews

10 Sep
To wrap up the final day of #21OPCC, here are ten key quotes that give an overview of topics discussed today.
“Cultural aspect of what death and dying mean. Other countries do that so much better than what we do in Australia.” - Prof Patsy Yates #21OPCC @pastyymates
"Aged care facilities want to provide great care - if funded appropriately, we can do that better, capacity can be built." - Peter Jenkin #21OPCC
Read 12 tweets
9 Sep
Another full day of interesting and insightful discussions about #palliativecare at #21OPCC. Following are ten key quotes for an overview of the second full day of presentations.
"When the doctor has time to sit and listen, this has a huge impact on the patient" - Dr Diana Ferreira @diana_mbhf - great insight from the patients' perspective as a cancer patient #21OPCC
"Death is not linear" - Dr Katrin Gerber @NAgeingRI #21OPCC
Read 11 tweets
9 Sep
Last plenaries for the day about to begin - I'll be tweeting from this one- What is needed for better outcomes for breakthrough cancer pain? #21OPCC
Session chaired by Prof Gregory Crawford from Uni of Adelaide, Prof Andrew Davies from Trinity College, Dublin, Emeritus Prof Maree Smith from Uni of Qld, @diana_mbhf a #palliativecare researcher & cancer patient, & Dr Jessica Lee from Concord Centre for Palliative Care #21OPCC
Prof Andrew Davies - longstanding interest in breakthrough pain, disappointing thing is we still seem to have a problem in terms of diagnosing the problem, assessing it, and providing adequate medications #21OPCC
Read 14 tweets
9 Sep
I will now be tweeting from the ''Collaboration and Integration session, chaired by Camilla Rowland #21OPCC
First presenter in this session is Judy Hollingworth talking about 'Palliative care practitioners and community advocates collaborate in a disadvantaged rural region' #21OPCC
After a lovely acknowledgement to country, Judy begins her story about collaboration and causation #21OPCC
Read 76 tweets
9 Sep
Chaired by Dr Will Cairns OAM, introduces some of the early discussions about #palliativecare - identified key issues - continuity of care, caring for new patients with new conditions, caring for #COVID19 patients and also #palliativecare colleagues #21OPCC
Communication and international collaboration vital for management of #palliativecare during pandemic #21OPCC
Vital for #palliativecare providers to document their experiences of #COVID19 #21OPCC
Read 48 tweets
9 Sep
Welcome and acknowledgement to country by @didarmody
I acknowledge I am tweeting from Kaurna country and pay my respects to Elders past and present #21OPCC
.@didarmody reminds us to have a look at the art submitted for the art competition #21OPCC
International panel coming up! Incl #palliativecare experts @rachelcogs, Christian Ntizimira @ntizimira, Dr Katherine Pettus @kpettus, Dr Malama Tafuna’l from University of Otago, A/Prof Ghauri Aggarwal, and A/Prof @OdetteSpruyt #21OPCC
Read 47 tweets

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