In Australia, improvements in medical care have seen growth in the incidence, prevalence and annual hospitalisation rates for children and young people with life-limiting conditions (LLC). The Paediatric Palliative Care Service (PPCS) is located at Queensland Children’s Hospital (QCH), Brisbane and delivers care to many of these children and their families. Health research data has revealed that over 33% of Queensland young people with LLC live in regional/remote areas. Geographical isolation and a dearth of local health resources limit access to paediatric palliative care (PPC), thereby necessitating transfer to QCH, along with the resultant isolation from community.  Upon receipt of additional funding in early 2020, a previously adhoc model of telehealth intervention became well-established.  E-PPCS is now delivering a designated, inter-professional telehealth outreach collaborative by connecting families, local professionals and communities to PPCS expertise and resources via a virtual clinic platform.

In establishing the PCCOC, it was hoped that a participatory design thinking approach could be enlisted in service development.  Alas, a global pandemic stymied this intention by creating several challenges, not least being project staff recruitment and equipment acquisition.  Despite these barriers, it remained a priority to collaboratively companion with regionally based, past and current family representatives, thereby providing service users’ perspectives. There are four family members who actively participate with the project’s advisory group.  Coupling the familial involvement with the viewpoint of two clinicians based across regional Queensland has been invaluable.  Together these perspectives deliver rich fodder that shapes E-PPCS service provision.  

E-PPCS priorities were affirmed via semi-structured interviews with both the family and regional clinician representatives.  Subsequent thematic analysis of their free-text responses to the series of open-ended questions posited, has enhanced the service model.   

This presentation will highlight the inherent benefit found in companioning with family service users and clinical stakeholders when developing and sustaining an effective, dedicated inter-professional telehealth service.