Mentoring the Wellbeing of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia.

Background: The Quality of Care Collaborative Australia (QuoCCA), working across 6 tertiary centers throughout Australia, builds capability in the generalist and specialist pediatric palliative care (PPC) workforce, by providing education in metropolitan and regional areas. As part of the education and mentoring framework, Medical Fellows and Nurse Practitioner Candidates (trainees) were funded by QuoCCA at four tertiary hospitals throughout Australia. Objective: This study explores the perspectives and experiences of clinicians who had occupied the QuoCCA Medical Fellow and Nurse Practitioner trainee positions in the specialised area of PPC at Queensland Children's Hospital, Brisbane, to identify the ways in which they were supported and mentored to maintain their wellbeing and facilitate sustainable practice. Methods: Discovery Interview methodology was used to collect detailed experiences of 11 Medical Fellows and Nurse Practitioner candidates/trainees employed by QuoCCA from 2016 to 2022. Results: The trainees were mentored by their colleagues and team leaders to overcome challenges of learning a new service, getting to know the families and building their competence and confidence in providing care and being on call. Trainees experienced mentorship and role modelling of self-care and team care that promoted wellbeing and sustainable practice. Group supervision provided dedicated time for reflection as a team and development of individual and team wellbeing strategies. The trainees also found it rewarding to support clinicians in other hospitals and regional teams that cared for palliative patients. The trainee roles provided the opportunity to learn a new service and broaden career horizons as well as establish wellbeing practices that could be transferred to other areas. Conclusion: Collegial interdisciplinary mentoring, with the team learning together and caring for each other along common goals, contributed immensely to the wellbeing of the trainees as they developed effective strategies to ensure their sustainability in caring for PPC patients and families.

Education and Mentoring of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia.

Background: The Quality of Care Collaborative Australia (QuoCCA) builds capability in the generalist and specialist paediatric palliative care (PPC) workforce throughout Australia. It supports regional and community services to provide care close to families' homes, as well as building expertise in tertiary centers. Objective: Medical Fellows and Nurse Practitioner candidates (specialist trainees) were funded by QuoCCA at four tertiary hospitals throughout Australia supported by an education and mentoring framework. This study explored the activity and experiences of clinicians who had occupied these roles to evaluate their effectiveness to build PPC capability. Methods: Online surveys recorded the monthly activity of Medical Fellows, with a point in time check of knowledge, skills and confidence in 2019. Discovery Interview methodology was used to collect detailed experiences of 11 trainees employed between 2018 to 2022 in Queensland. Results: A combination of mentoring and formal and informal education, peer support and practical experience was valuable for trainees. They found the support of the whole interdisciplinary team advantageous to learning. Shadowing experienced team members gave them the opportunity to learn practical skills, especially regarding communication with families. Practicing clinical skills was beneficial, through being on call, attending home visits, supporting families, prescribing medications and developing treatment plans in collaboration with the team. The trainee experience was optimised through learning from families, personal reflection, involvement in research projects and delivering QuoCCA education. Conclusion: The QuoCCA trainee roles for Medical Fellows and Nurse Practitioner candidates exhibit a valuable and effective education and mentorship framework that could be applied to other specialties. The service leadership and collaborative interdisciplinary team support various modes of education and mentoring. The roles not only develop the trainees' specialised PPC clinical skills, they also improve their general clinical practice, including communication, empathy and holistic care. A structured curriculum of education is recommended to protect these positive outcomes.

Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia.

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.

Ongoing Value and Practice Improvement Outcomes from Pediatric Palliative Care Education: The Quality of Care Collaborative Australia.

PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact evaluation has shown this education to be beneficial. This study examines the longer term outcomes reported by the participants more than 4 months following education. METHODS: An online survey measuring quantitative and qualitative education outcomes was sent to all participants of QuoCCA 2 education throughout Australia, at least 4 months following their education. There were 152 respondents between February 2018 and June 2020. RESULTS: More than 4 months after the QuoCCA education, 98% of respondents rated it as extremely valuable or valuable and 78% of respondents rated it extremely or very helpful in improving clinical practice. Improvements in knowledge, skills or confidence were reported by 90% or more respondents in the areas of PPC referral, responding to psychosocial needs, the benefits of the PPC approach, PPC resources and communication skills. Between 84% and 89% of respondents reported improvements in advance care planning, assessment and intervention, responding to physical needs, supporting spiritual needs and supporting health professionals and self care. Providing bereavement care improved in 85% of responses. The most valuable aspects of the education, changes in practice and barriers to the implementation of learning were discussed. CONCLUSION: The interprofessional QuoCCA education in PPC continued to provide value and clinical practice improvements for the majority of respondents more than four months after the session. Respondents particularly mentioned improvements in awareness of the network of care, the practical management of patients and communication skills. Reflection on clinical practice, in a proactive clinical learning environment, enabled the translation of education into improvements to the quality of PPC.

Telling the Story of Childhood Cancer-The Experience of Families After Treatment.

BACKGROUND: The Discovery Interview methodology was introduced to Oncology Services Group in 2012 as a service improvement strategy and was evaluated positively by staff and families. It enabled clinical staff to hear the deidentified families' stories, understand their experience, and implement process and practice enhancements. OBJECTIVE: This study collected family stories following treatment for childhood cancer at the tertiary center in Queensland, with the goal of raising awareness and improving family experience. METHOD: Twenty-five families were interviewed via an interview spine which covered the major stages of cancer treatment and themes were extracted. RESULTS: Major themes were psychological support needs, adapting to the new normal, and rebuilding relationships. After treatment, the parent had time to reflect on their experience and lost the reassurance of regularly attending the tertiary hospital. There was ongoing anxiety regarding relapse. Parents reported various coping strategies and some wanted to maintain contact with other oncology families. Families strived to get back to a level of normality such as attending school and experienced some challenges in relationships with family and friends. CONCLUSION: Families needed support and reassurance from their local health professionals to navigate the ongoing challenges following treatment.

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

The Oncology Services Group at Queensland Children's Hospital established an Oncology Family Forum in 2018 to enable codesign of service improvements. A total of 26 family members attended the first 4 Forums, with between 12 and 15 attendees at each. Attendees represented a range of diagnoses, were 85% female, 85% resided within 40 km of the tertiary center, and 26% were on-treatment. In a survey of attendees, 83% agreed that the Forum had improved families' service experience and 92% supported the codesign partnership and the exploration of their suggestions. A small proportion (25%) of attendees disagreed that there was enough time to share, 17% disagreed that all their questions were answered, and 17% disagreed that the Forum represented views of regional families. Respondents identified collaboration, improving understanding and communication as positive aspects of the Forums. Forums will continue to be offered regularly, augmented by videoconferencing (particularly during the COVID-19 pandemic), written responses to family questions and special interest discussion groups. The new collaborations and programs that have been initiated, codesigned, and progressed through these Forums will continue to be the focus of service delivery and quality improvements.

Perspectives Of Health Professionals And Educators On The Outcomes Of A National Education Project In Pediatric Palliative Care: The Quality Of Care Collaborative Australia.

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.

Evaluating the impact of national education in pediatric palliative care: the Quality of Care Collaborative 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 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.

Needs analysis and development of a staff well-being program in a pediatric oncology, hematology, and palliative care services group.

PURPOSE: Around 170 multidisciplinary staff of the Oncology Services Group at Queensland Children's Hospital, Brisbane, care for children with oncology, hematology, and palliative care needs from throughout Queensland and northern New South Wales. A series of challenges impacted staff resilience and retention, and strategies were needed to improve staff well-being and enable them to flourish despite the inherent work stressors. METHODS: A needs analysis was conducted using themes from Discovery Interviews with 51 staff, surveys related to "The Work Stressors Scale - Pediatric Oncology" and "The Work Rewards Scale - Pediatric Oncology" completed by 59 staff, and an organizational staff survey responded to by 51 staff. RESULTS: The needs analysis informed the development of a customized Oncology Staff Well-being Program with a range of strategies aligned to a PERMA framework for flourishing (positive emotion, engagement, relationships, meaning, and accomplishment). Positive emotion areas included education on topics such as well-being, resilience, responding to escalating behaviors, grief and loss, and self-care. Staff attended the available mindfulness sessions, debriefing and counselors on site, developed self-care plans, and followed a well-being Facebook Group. Engagement was supported through exploring character strengths, improving communication, supporting innovation, and addressing frustrations and safety concerns. Relationships within the team were addressed through team building and social events. Meaning of the work was emphasized through sharing family updates and end of treatment celebrations. Accomplishments of staff were acknowledged in newsletters and meetings. CONCLUSION: The needs analysis drove a multifaceted approach to staff well-being with the development of strategies which aligned to a framework that would empower staff to flourish at work. Implementation and evaluation are ongoing and will be reported in a subsequent paper.

Evaluation of a staff well-being program in a pediatric oncology, hematology, and palliative care services group.

PURPOSE: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication. METHODS: Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey. RESULTS: Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families. CONCLUSION: The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.

The Oncology Family App: Providing Information and Support for Families Caring for Their Child With Cancer.

The Oncology Family App supports families across the vast state of Queensland, Australia, with easy access to vital information, including management plans for a deteriorating child, patient specific information and other resources. This article describes the development and evaluation of this mobile app. The app was developed and tested in collaboration with parents, caregivers, and clinicians and released in November 2015. This first version featured "Statewide Hospital Contacts," including phone numbers, links to Google maps, and 24-hour emergency contacts with click to call functionality; "When to Call" describing symptoms to look out for in a deteriorating child; "Blood Results Table"; and "Information" listing recommended websites, health care team contacts, appointments, and notes. The app was evaluated through interviews with parents, caregivers and patients and download metrics. Six months after the app release, 68% of the 38 parents and caregivers surveyed had downloaded the app. The most used modules were "Blood Results Table," "When to Call," and "Statewide Hospital Contacts," but families reported using all features available. Families were enthusiastic about the support the app provided and gave useful feedback to direct future development. Using mobile health technology to support families is a novel, but rapidly growing concept. Family and caregiver feedback showed that the Oncology Family App was an efficient and convenient way to provide much needed information. A new version of the app is under development and evaluation of outcomes will be ongoing.

Hospital administration team development and support in a children's cancer service.

The administration team in the Queensland Children's Cancer Centre at the Royal Children's Hospital, Brisbane, included a team of 16 administration staff supporting the service and the state-wide clinical network. Shortly after the creation of a new expanded service, issues became apparent in administration team morale, relationships, communication, processes, leadership, support and training. The analysis of these issues included team interviews and surveys, consultation with senior administration staff and monthly sick leave monitoring. Strategies implemented included providing information; the joint development of a team business plan and individual performance plans; a review of the team's structure, workload and business processes; engaging staff in quality improvements; and the development of relationships and leadership. As a result, the team reported being more comfortable and supported in their roles, had improved morale and worked better together with more consistent and improving business processes. They had clear purpose and expectations of their roles, displayed better customer service and had reduced sick leave. The study shows that in a high stress environment, such as a children's cancer centre, attention to the team's culture, vision and purpose, providing information and improving communication and relationships, when combined with a team's enthusiasm, will improve the team's growth, cooperation and work outcomes.