Thread by @CroakeyNews

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
quocca.com.au

@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 Copy of rapid review can be found here #21OPCC palliativecare.org.au/paediatric-pal…

@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

plz unroll
@threadreaderapp