Investing in bereavement care as a public health priority.

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.

The psychosocial impact of childhood dementia on children and their parents: a systematic review.

BACKGROUND: Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs. RESULTS: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory. CONCLUSION: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care.

CONTEXT: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. OBJECTIVES: To evaluate a Bereavement Support Program from the perspectives of both families and service providers. METHODS: A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. SETTING/ PARTICIPANTS: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. RESULTS: One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. CONCLUSION: Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.

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.

Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis.

This mixed method study explored parent and child characteristics that impact grief and personal growth in parents (n = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment, referral to palliative care, and location of death had a significant impact on levels of grief. Parents' gender, religious affiliation, and education level had a significant impact on levels of personal growth. This study further enhances our understanding of the impact of specific parent and child characteristics throughout a child's cancer treatment and end of life that may influence their families' experience of bereavement.

Exploring the Psychological Processes That Underlie Interpersonal Forgiveness: Replication and Extension of the Model of Motivated Interpersonal Forgiveness.

When, why, and how does interpersonal forgiveness occur? These questions guided recent research that compared the relative abilities of empathy versus motivated reasoning models to account for the influence of relationship closeness on interpersonal forgiveness. Consistent support was provided for the Model of Motivated Interpersonal Forgiveness. This model hypothesizes that, following relationship transgressions, relationship closeness leads to a desire to maintain a relationship. Desire to maintain a relationship leads to motivated reasoning. And motivated reasoning fosters interpersonal forgiveness. The goal of the present research was to examine two concerns that emerged from the initial support for the Model of Motivated Interpersonal Forgiveness. First, were the measures of motivated reasoning and interpersonal forgiveness conflated, thus reducing the potential for empathy to account for interpersonal forgiveness? Second, did the analytic estimation used reduce the power to detect the mediational role of empathy? The present research examined these questions. When motivated reasoning was measured by thought listings (in addition to the original questionnaire items) and when the analytic estimation provided greater power, the Model of Motivated Interpersonal Forgiveness was replicated.

An Evaluation of By My Side: Peer Support in Written Form is Acceptable and Useful for Parents Bereaved by Childhood Cancer.

CONTEXT: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge. OBJECTIVES: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side. DESIGN: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data. SETTING/PARTICIPANTS: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side. RESULTS: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.

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.

Palliative Care in Adolescents and Young Adults With Cancer-Why Do Adolescents Need Special Attention?

Meeting shortfalls in the provision of care to adolescents and young adults with cancer has focused largely on improving outcomes and psychosocial support. A significant percentage of adolescents and young adults with cancer will die of disease because of initial poor prognosis conditions or disease relapse. In adults, progress has been made in the concept of an integrated cancer/palliative care service. In pediatric oncology, the application of this philosophy of care has lagged behind somewhat. In the case of adolescents, particularly those with advanced cancer, the palliative care needs, in a broader sense than only end-of-life care, are often not adequately met, irrespective of whether treatment is delivered in a pediatric or adult cancer service. There are a number of age-specific aspects to palliative and supportive care for adolescents. Complex interactions between clinicians, parents, and patients potentially limit the young person's ability to influence care planning. The wide variation in real or perceived competency at this age, the developmental challenges in relation to behavior, communication, and coping strategy all require particular professional expertise that is not always available.

A Retrospective Review of Resuscitation Planning at a Children's Hospital.

Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children's Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP that was documented within the last 48 h of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration, particularly involving PICU and PPC services, in developing protocols of how to manage this difficult but inevitable clinical scenario.

Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology.

After a child's death to cancer, families commonly want continued connection with the healthcare team that cared for their child, yet bereavement follow-up is often sporadic. A comprehensive literature search found that many bereaved parents experience poor psychological outcomes during bereavement and that parents want follow-up and benefit from continued connection with their child's healthcare providers. Evidence suggests that the standard of care should consist of at least one meaningful contact between the healthcare team and bereaved parents to identify those at risk for negative psychosocial sequelae and to provide resources for bereavement support.

Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research.

Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients' vital status and appropriate researcher responses to bereaved parents. The management of researchers' emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents' early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants' and researchers' emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.

Hospital-based bereavement services following the death of a child: a mixed study review.

BACKGROUND: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. AIM: To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care. DESIGN: Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool. DATA SOURCES: MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents. RESULTS: In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine descriptive articles were also included. Qualitatively, family members described feeling cared for and supported by staff, a reduction in sense of isolation, and improved coping and personal growth. Quantitatively, bereavement services have most effect for parents experiencing more complex mourning. It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the "whole family" and flexibility in service delivery. CONCLUSIONS: There is a role for transitional hospital-based services/interventions for families in the lead up to and following the death of a child. Further mixed method research is required to inform best practice bereavement care guidelines in the perinatal, neonatal, and pediatric hospital settings.

Development of a state-wide pediatric palliative care service in Australia: referral and outcomes over two years.

BACKGROUND: Pediatric palliative care is an evolving specialty that aims to improve the lives of children with a life-limiting condition. As an emerging specialty, there is much to be learned about service provision and the expected outcomes that can be achieved. Additionally, quantification of the needs for pediatric palliative care is complicated by the uncertainty of defining the population that requires care. OBJECTIVES: Our aim was to define the characteristics of the population cared for by a newly formed state-wide service in Queensland, Australia, and describe the development of the service over a 24-month period. DESIGN: Data on all referrals and outcomes were collected. Descriptive statistics were used to describe patterns including the variation in outcomes between children with oncology and non-oncology diagnoses. Other factors influencing the development of the service including involved health professionals and the model of the Australian health care system are also described. RESULTS: Over a 24-month period, 150 patients were referred of whom 117 subsequently died. There was a wide range of diseases and ages, and significantly, 58% of children were from regional or rural locations where there are can be limited access to specialist pediatric services. The average length of service was 83 days. A variety of factors were identified as being important for providing optimal care including ensuring equity in access, timing of referral, and continuity of care. CONCLUSION: 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.