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Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the patient and their family in a pediatric context.To identify what pediatric healthcare professionals consider important when preparing for an EoL discussion.A qualitative design using a group interview. Two open-ended questions were asked: (1) How could preparedness to initiate EoL care discussions between healthcare professionals and the patient and family be enhanced? (2) What education resources/strategies could be developed to support preparation for EoL care discussions?Healthcare professionals, including medical, nursing, and allied health professionals working in pediatric palliative care settings across Queensland, Australia. These settings included major tertiary hospitals, general practice, community, and nongovernment organizations. A convenience sample of 36 healthcare professionals consented to participate in the study.An analysis of the data identified seven themes that had relevance for preparing for an EoL discussion: communication, healthcare professional perspectives, interdisciplinary team role, patient and family perspectives, practical issues, addressing mistakes, and healthcare professional education.Pediatric healthcare professionals confirmed that gaps exist in preparing for an EoL discussion. The findings support a need for further research in two areas. First, a systematic review of interdisciplinary resources that are available to support healthcare professionals in preparing for EoL discussions is recommended. Second, evidence-based interdisciplinary interventions to support pediatric EoL discussions need to be developed and evaluated.

Penelope J Slater,1 Anthony R Herbert,2,3 Sarah J Baggio,2 Leigh A Donovan,2 Alison M McLarty,2 Julie A Duffield,4 Lee-anne C Pedersen,2,3 Jacqueline K Duc,2 Angela M Delaney,2 Susan A Johnson,2 Melissa G Heywood,5 Charlotte A Burr6 On behalf of Quality of Care Collaborative Australia 1Oncology Services Group, Queensland Children’s Hospital, Children’s Health Queensland, South Brisbane, QLD, Australia; 2Paediatric Palliative Care Service, Queensland Children’s Hospital, Children’s Health Queensland, QLD, Australia; 3Centre for Children’s Health Research at Institute of Health and Biomedical Innovation, Queensland University of Technology, QLD, Australia; 4Paediatric Palliative Care Service, Women’s and Children’s Health Network, Adelaide, SA, Australia; 5Victorian Paediatric Palliative Care Program, The Royal Children’s Hospital, Melbourne, VIC, Australia; 6Western Australia Paediatric Palliative Care Service, Perth Children’s Hospital, Perth, WA, Australia Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliative care services, through funding for Nurse Educators, Medical Fellows, a National Allied Health Educator, and national project staff.Methods: Pre- and post-education surveys were completed by participants immediately following the education, and confidence and knowledge were measured along nine domains related to the care of the child and family, including managing a new referral, symptom management, medications, preparing the family, and using local agencies.Results: Education was provided to over 5,500 health and human service professionals in 337 education sessions across Australia between May 2015 and June 2017. Paired pre- and postsurveys were completed by 969 participants and showed a significant improvement in all the domains measured. Those with no experience in caring for children receiving palliative care showed greater improvement following QuoCCA education compared to those with experience, although the latter had higher scores both before and after education. Similarly, those with no previous education showed greater improvement, but those with previous education showed higher scores overall. Participants in full-day and half-day sessions showed greater improvement than those in short day sessions. Thus, the dosage of education in the length of the sessions and prior attendance impacted knowledge and confidence. Topics requested by the participants were analyzed. Educator learnings were that education was more effective when tailored to the needs of the audience, was interactive, and included story-telling, case studies, and parent experiences.Conclusion: These results encouraged the continuation of the provision of education to novice and experienced professionals who care for children with a life-limiting condition, leading to higher levels of confidence and knowledge. The learnings from this evaluation will be transferred into the second round of funding for the national QuoCCA education project. The next stage will focus on developing simulation and interactive training, accessible training modules, and videos on a national website. Keywords: training, evaluation, health care, education dosage, confidence

Background: Pediatric palliative care is an evolving specialty that aims to improve the lives of children with a life-limiting condition. As an emerging specialty, there is much to be learned about service provision and the expected outcomes that can be achieved. Additionally, quantification of the needs for pediatric palliative care is complicated by the uncertainty of defining the population that requires care. Objectives: Our aim was to define the characteristics of the population cared for by a newly formed state-wide service in Queensland, Australia, and describe the development of the service over a 24-month period. Design: Data on all referrals and outcomes were collected. Descriptive statistics were used to describe patterns including the variation in outcomes between children with oncology and non-oncology diagnoses. Other factors influencing the development of the service including involved health professionals and the model of the Australian health care system are also described. Results: Over a 24-month period, 150 patients were referred of whom 117 subsequently died. There was a wide range of diseases and ages, and significantly, 58% of children were from regional or rural locations where there are can be limited access to specialist pediatric services. The average length of service was 83 days. A variety of factors were identified as being important for providing optimal care including ensuring equity in access, timing of referral, and continuity of care. Conclusion: The importance of a population-based approach to pediatric palliative care in a state that is geographically large and diverse like Queensland is highlighted. This article may provide valuable information to other health care providers who care for children with life-limiting illnesses.

Summary We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.

Families caring for a child with incurable cancer require access to support and advice round the clock. In Brisbane, Australia, an after-hours phone service was established to support these families. This service is operated by oncology clinical nurse consultants (CNCs) experienced in pediatric palliative care. This is the first review of 8 years of activity, totaling 106 patients and 1954 calls. The majority of calls were between parents and CNCs (51%). Updating of the patient’s condition (18%) was the primary reason for calls, with support and reassurance (16%), and symptom management of pain (10%) being the other frequent reasons. The majority of calls occurred over the weekends in the morning, with only 11% (n = 209) of calls occurring between 10:00 pm and 7:00 am. Of all the calls made, 43% (n = 814) were calls managed by the CNC without requiring further intervention. Calls were received from throughout Queensland, indicating the value of the service in supporting families throughout the state. The after-hours phone service has proven to be a simple, effective, and valuable service, which is consistently accessed by families, regardless of distance from the hospital.

Children with life limiting conditions require intensive, complex management of the physical, psychosocial and spiritual issues that evolve for the child and their family as the focus of care moves from curative treatment to palliation. Optimal palliative care for children can be limited by the lack of health professionals with the necessary skills and experience to confidently and competently manage the care of both the child and the family. The University of Queensland's Centre for Online Health has been working closely with the Paediatric Palliative Care Service (PPCS) at the Royal Children's Hospital (RCH) in Brisbane, Australia, to investigate the potential of telemedicine for the delivery of specialist support in the home or local community. Research conducted in Queensland has shown how telemedicine can be effectively used to link the specialist paediatric palliative care team into the home of families caring for a child receiving palliative care, regardless of their physical distance from the RCH. This qualitative report describes two case studies, each illustrating the value of home telemedicine for families at this vulnerable and distressing time. This work should provide a useful insight for other specialty disciplines contemplating home telemedicine applications.