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Background: The greater proportion of children with a life-limiting condition (LLC) and their families want to remain at home as much as possible. Building capability in paediatric palliative care (PPC) for generalist health and social care professionals in nonmetropolitan regions through the Quality of Care Collaborative Australia (QuoCCA) has improved access to palliative care for families, regardless of where they live. Aim: To understand the experience of families whose child has received specialist PPC, to ensure future service capability development is informed by lived experience. Design: A retrospective, descriptive study in which parents participated in a semi-structured telephone interview guided by Discovery Interview methodology. Inductive thematic analysis identified the major learnings from participants. Participants: Parents caring for a child referred to the specialist PPC service, who received a pop-up visit and whose child is stable or who are more than 6 months bereaved. Results: Eleven parents (n = 9 mothers; n = 2 fathers) of children with an LLC (n = 5) or whose child had died (n = 6) participated in an interview. The overarching themes and subthemes were as follows: (1) burden of suffering, in which parents described grieving for the life once anticipated, confronting many life transitions and seeking quality of life for their child and (2) umbrella of support, in which parents built partnerships with professional support, activated a network of care around their family and sought responses to their whole family's needs. Conclusion: Parents caring for a child with an LLC described significant personal, familial, social and existential adjustments. This study integrates a relational learning approach with QuoCCA education grounded in the relationships between children, families and professionals. Learning from lived experience in PPC education enhances the preparedness of generalist health and social care professionals to join a child and their family throughout their various life transitions and facilitates the goal to remain at home within their community for as long as possible. Education in PPC is an imperative component of service models, enabling regional services to gain confidence and capability in the context of a dying child and their family, empowered and informed through the voice of the family. Plain Language Summary: Enhancing palliative care for children through education informed by the experience of families It is often the wish of many children/young people with a life-limiting condition to stay at home with their families as much as possible. It is important that specialist palliative care services provide training and mentoring to the family's local care professionals to support the delivery of good care, particularly those in rural and remote areas.This article aims to integrate the lived experience of families with palliative care education, so that the education reflects and addresses the needs that they express.Parents were interviewed by telephone using a method called Discovery Interviews. This is an open interview process, guided by a spine that describes the main points of palliative care. Parents can openly talk about their experience, focusing on the areas that are important to them. Interviews were studied by four researchers, and emerging themes were discussed and summarised.The study included parents whose child/young person was receiving support from specialist palliative care and bereaved parents whose child had died more than 6 months ago. In total, eleven parents (nine mothers and two fathers) were interviewed, five participants had children currently receiving palliative care and six were bereaved.The overarching themes were as follows:Burden of suffering, in which parents described grieving for the life they had expected, confronting transitions and seeking good quality of life for their child.Umbrella of support, in which parents built partnerships with care teams and activated a network of care to address the needs of their whole family.This study allowed the families' perspectives to be integrated into the palliative care education of care professionals in the family's local area. The lived experience of families prepared care professionals to support families with the care of their child/young person, allowing them to remain at home as long as possible.
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PURPOSE: Demand for generalist health professional knowledge and skills in pediatric palliative care (PPC) is growing in response to heightened recognition of the benefits of a palliative approach across the neonatal, pediatric, adolescent and young adult lifespan. This study investigates factors that enhanced PPC workforce capability and education outcomes in metropolitan and regional areas through the integration of dedicated educator roles within specialist pediatric palliative care (SPPC) teams through a national education project. METHODS: Cross-sectional, prospective qualitative study guided by the Consolidated Criteria for Reporting Qualitative Studies. The study drew on Discovery Interview methodology and transcripts subjected to inductive thematic analysis. A convenience sample (n=16) of health professionals and educators were recruited from specialist tertiary and regional services providing PPC in Australia. RESULTS: Four themes emerged related to outcomes of the national PPC education project: (1) building capability in PPC, (2) developing inter-professional partnerships, (3) sustaining staff well-being, and (4) learning from children and families. Dedicated educator roles in SPPC services enhanced workforce capability through education and ongoing mentoring, built collaborative relationships between the complex network of care providers for children with a life-limiting condition (LLC) and their families, and improved quality and access to PPC. Delivery of education evolved from didactic to interactive engagement and coincided with development of a mentoring model between SPPC clinicians and generalist health and social care providers. CONCLUSION: This study contributes to a growing body of knowledge on innovative and responsive mechanisms for enhancing workforce capability in PPC and provides additional evidence to support funding of dedicated educator roles in specialist PPC services.
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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 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. 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.
