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.
A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Background Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers’ perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness. Methods Four subscales were included in the analysis: Connect with Families , Involve Parents , Share Information Among Health Professionals , Support Siblings . The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed. Results A total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach’s alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups. Conclusions There is evidence for a four-factor structure within a new Quality of Children’s Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents.
Issue 6. Cochrane Reviews are regularly updated as new evidence emerges and in response to comments and criticisms, and the Cochrane Database of Systematic Reviews should be consulted for the most recent version of the Review.
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