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.
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.
PurposeThe 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.MethodsPre- 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.ResultsEducation 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 post-surveys 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.ConclusionThese 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.
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.
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