Understanding the ongoing learning needs of Australian paediatricians: Evaluation of a pilot paediatric video teaching programme.

AIM: The purpose of this study was to evaluate whether pre-recorded video-based lectures (VBLs) covering a range of paediatric topics are an acceptable means of providing ongoing education for consultant and trainee paediatricians in Australia. METHODS: Previous participants (paediatric consultants and junior medical officers) of a neurology outreach teleconference programme offered by a paediatric neurologist between 2017 and 2020 were invited to participate in a multi-specialty pre-recorded video-based education programme. Acceptability was explored by assessing relevance, likelihood of utilising VBL's in the future, uptake and learning activity preferences. The impact of VBLs on confidence, currency and practice was also explored. Additional data including topics of interest, preferred video format, duration, viewing method and frequency of delivery were captured, to better understand participant preferences to inform future efforts. RESULTS: A total of 135 consented; 116 returned baseline; 94 returned follow-up surveys. Preferred learning activities included a live/interactive component. Videos were considered relevant. Preferences for pre-recorded videos improved from ninth to sixth most preferred learning activity post-intervention. VBL convenience and accessibility were valued. Practice was altered in: approach to management, use of treatments, confidence in decision-making, and discussion with families and patients. The average view duration was 16 min. Longer videos yielded slightly lower audience retention rates. For future offerings, the majority endorsed a preference for a 'mixed' video format and duration of 20-40 min, offered monthly. CONCLUSION: Video-based medical education is an appealing and sustainable alternative, given the convenience of unrestricted accessibility, in meeting ongoing learning needs of Australian paediatricians and trainees.

Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data.

OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced with stressful situations. The overall aim of the study was to learn more about illness-related communication between parents and well-siblings, giving particular consideration to the amount of illness-related communication, and sibling satisfaction with familial communication. METHODS: Participants included 48 well-siblings (aged 6-21 years) of children with LLCs and their parents. Parents and well-siblings independently completed validated measures of familial communication and sibling functioning. Parents also provided demographic information and completed a questionnaire assessing amount of illness-related information provided to well-siblings. RESULTS: Parents reported that 47.8% of well-siblings never or rarely initiated conversations about their sibling's illness. Moreover, 52.2% of well-siblings never or rarely spoke about death. Amount of illness-related communication between parents and well-siblings was most strongly predicted by parental resilience and well-sibling age. Parents engaged in significantly more illness-related communication with girls than boys (t(44)=-2.28, p = .028). Well-siblings (p < .01) and parents (p < .05) rated satisfaction with familial communication significantly higher than published norms. The only significant predictor of well-sibling satisfaction with familial communication was greater familial cohesion. Family communication variables were not significantly correlated with measures of sibling functioning (all p's>.05). CONCLUSIONS: This study provides new information regarding parent and well-sibling communication in families who have a child with a LLC.

Living with a child who has a life-limiting condition: The functioning of well-siblings and parents.

BACKGROUND: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning. METHODS: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family. RESULTS: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = -.369, p < .05) and anxiety symptoms (r = -.473, p < .01) but not stress scores (r = -.074, p = .644). CONCLUSION: Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported well-sibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.

Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis.

BACKGROUND: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for 'accessible and flexible' models of care that are 'responsive' to peoples' changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. AIM: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. DESIGN: A systematic review of systematic reviews ('meta-review'). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. DATA SOURCES: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. RESULTS: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. CONCLUSIONS: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. SYSTEMATIC REVIEW REGISTRATION NUMBER: Prospero CRD42020200266.

Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition.

Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed.

Managing paediatric death in the emergency department.

Death of a child in an emergency department is a rare occurrence, but one with significant impact on the family and staff involved. The rarity means few emergency department clinicians feel 'expert' in the overall management process. However, most have some knowledge and experience which can be augmented by collaborating with other health professionals. By exploring some of the main management issues and challenges for the emergency department, key aspects of care are identified for emergency department clinicians to consider in reviewing local procedures and guidelines.

Paediatric palliative care - the role of the GP.

BACKGROUND: Paediatric palliative care (PPC) is a growing specialty area in Australia and many families aim to care for their child at home as much as possible, including during the terminal phase. OBJECTIVE: This article aims to highlight the important role of the general practitioner (GP) in the management of PPC patients, especially if families want to care for their child at home. The support that specialist PPC teams can offer the GP is also emphasised. DISCUSSION: The GP has much to offer in conjunction with other local services, being part of a team managing the child with palliative care needs. Specialist PPC services can provide the GP with relevant information, specific education, advice and ongoing support to fulfil their important role for the child and family.

Evaluation of paediatric palliative care ambulance plans: A retrospective study.

Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.

Developing the Comfort Care Case: An End-of-Life Resource for Pediatric Patients, Their Families, and Health Professionals.

Caring for a child in hospital who is approaching death, in the terminal phase, requires a focus on caring for the physical, emotional, and spiritual needs of the child and family. Health professionals caring for these children and families may need to shift their focus from a treatment-focused approach aimed at cure or maintaining life to a comfort-focused approach. The Comfort Care Case (CCC) is a collection of resources designed for use in hospital to ease suffering and facilitate comfort within a pediatric end-of-life (EOL) context. The resources are intended to support the child, the family, and the health professionals involved in EOL care. This article describes the development, implementation, and education associated with the CCC in a tertiary pediatric hospital.

The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child's disease trajectory.

Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning?

Despite increasing cure rates, cancer is a leading cause of non-accidental death in childhood. Models of psychosocial care in pediatric cancer may therefore need to address bereavement planning for a 'minority group' of parents (approximately 25%) for whom cure of their child is not possible. This study addresses a gap in knowledge concerning long-term bereavement and psychological outcomes for parents, as a function of the sex of the parent and the place of the child's death: home versus hospital. Fifty Australian parents (25 father-mother dyads), whose child had died at least 1 year prior to study participation, independently completed measures of psychological functioning (depression, anxiety and stress), family functioning, and pathological grieving (separation distress, and traumatic distress). The results showed some support for a hypothesized interaction between place of death and sex of parent. Fathers reported significantly higher levels of depression, anxiety and stress when the child died in hospital rather than at home. By way of contrast, differences for mothers as function of place of death were not reflected in psychological outcomes but were more closely tied to symptoms of pathological grieving. The findings are discussed with respect to the needs for services for surviving adult family members, especially for fathers who may have an enhanced psychological vulnerability after the death of a child in hospital rather than at home.

The dying child: how is care different?

Of children needing palliative care, less than half have a malignancy. Most families will elect to care for their child at home if this is offered as a realistic option. The often protracted and unpredictable nature of the many illness trajectories encountered in paediatric palliative care requires an approach that integrates palliative care with curative care. Children bring added dimensions to the physical, psychosocial and ethical aspects of palliative care. Health professionals from both paediatric and palliative care sectors have skills and knowledge to bring to palliative care of the child.