A Provider-Based Survey To Assess Bereavement Care Knowledge, Attitudes, and Practices in Pediatric Oncologists (original) (raw)
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Palliative and Supportive Care
ObjectiveThe death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.MethodExperts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of car...
Psycho-Oncology, 2015
Objectives: Follow-up practices with bereaved families are considered a part of good medical care, yet little is known about pediatric oncologists' protocol with families when their patients die. The objective of this study was to examine follow-up practices employed by pediatric oncologists after patient death using an in-depth qualitative analysis. Methods: The Grounded Theory method of data collection and analysis was used. Twenty-one pediatric oncologists at two Canadian pediatric hospitals were interviewed about their follow-up practices with bereaved families after patients died. Line-by-line coding was used to establish codes and themes, and constant comparison was used to establish relationships among emerging codes and themes. Results: Pediatric oncologists actively engage in follow-up practices that include making phone calls, sending an email or condolence card, attending funerals or visitations, having long-term and shortterm meetings with parents, and attending hospital or departmental memorials for the deceased child. Attending funerals or visitations was less frequent and varied widely across pediatric oncologists. Reasons for not participating in bereavement follow-up practices included logistical, emotional, and practical considerations. Conclusions: While the majority of pediatric oncologists at two Canadian centers engage in some follow-up practices with bereaved families, these practices are complex and challenging because of the emotional nature of these interactions. Medical institutions should provide both structured time for this follow-up work with families, as well as medical education and financial and emotional support to pediatric oncologists who continue caring for these families long after their child has died.
Children
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.
Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
Children
Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider’s perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams’ understanding of bereaved parents’ end-of-life care preferences through narratives. Bereaved parents were recruited from our institution’s Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child’s end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements...
Defining the Boundaries of Palliative Care in Pediatric Oncology
Journal of Pain and Symptom Management, 2019
Context.-Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult. Objectives.-We sought to describe oncologists' current understanding of PC and how primary PC is provided for children with cancer. Methods.-This mixed-methods study explored pediatric oncology providers' definitions of PC and self-reported PC practices through semistructured audiotaped interviews. Conventional content analysis was applied to interview transcripts. Results.-Seventy-seven participants with diverse training backgrounds (30 attending physicians, 21 nurses, 18 fellows, five nurse practitioners, and two child life specialists) completed an interview. Approximately 75% provided a modern definition of PC (e.g., not limited to end-oflife care); all participants acknowledged primary PC skills as part of their daily clinical activities. However, participants expressed wide variation in the comfort and time spent performing primary PC tasks (i.e., symptom management, addressing mental health and psychosocial needs) and over half reported that patients' PC needs are not adequately met. In addition, some reported confusion about the benefits of PC consultation, despite acknowledging that PC needs to be better integrated into the care of pediatric oncology patients. Conclusion.-Our findings demonstrate that although most pediatric oncologists accept a modern definition of PC in theory, how to integrate PC into pediatric oncology practice is less understood. Formalized training and standardization of practice surrounding identification of
Bereaved Parents' Views on End-of-Life Care for Children With Cancer: Quality Marker Implications
Cancer, 2020
BACKGROUND: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. METHODS: This study enrolled a convenience sample of 28 bereaved parents (English-or Spanish-speaking) whose children (0-21 years old) had died of cancer ≥6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). RESULTS: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. CONCLUSIONS: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.
Bereaved Caregivers as Educators in Pediatric Palliative Care: Their Experiences and Impact
Journal of Palliative Medicine, 2013
Background: With the continuing growth of pediatric palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals utilizing curriculum from the Initiative for Pediatric Palliative Care (IPPC), but the experience of bereaved parents as educators has not been studied. Objectives: This qualitative research examined the experience of bereaved parents involved in pediatric palliative care education of health care professionals and the challenges and possible benefits for the health care professionals. Methods: Nine bereaved parents and eleven health care professionals were interviewed about their experiences in a pediatric palliative care education program utilizing the IPPC curriculum. The interviews were recorded, transcribed, coded and analyzed for themes and subthemes. Results: Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding. Some professionals noted that the presence of parents may have limited the openness of discussion of the professionals and parents acknowledged challenges of emotional management in their participation in the educational program. Both parents and professionals recognized and described challenges involved in working sensitively with patients and families without being overwhelmed by the intensity of situations where children die. Conclusion: More benefits than burdens were experienced by both parents and health care professionals from the participation of bereaved parents in the palliative care trainings.
Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients
Journal of Clinical Oncology, 2008
Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients. Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.
Pediatric oncologists' coping strategies for dealing with patient death
Journal of Psychosocial Oncology, 2016
This research examined pediatric oncologists coping strategies when their patients died of cancer. Twenty-one pediatric oncologists at 2 Canadian pediatric academic hospitals were interviewed about their coping strategies when patients died or were in the process of dying. The grounded theory method of data collection and data analysis were used. Line-by-line coding was used to establish codes and themes and constant comparison was used to establish relations among emerging codes and themes. Pediatric oncologists used engagement coping strategies with primary and secondary responses including emotional regulation (social support and religion), problem solving (supporting families at end of life), cognitive restructuring (making a difference and research), and distraction (breaks, physical activity, hobbies and entertainment, spending time with own children).They also used disengagement coping strategies that included voluntary avoidance(compartmentalization and withdrawing from families at end of life). Given the chronic nature of patient death in pediatric oncology and the emotionally difficult nature of this work, medical institutions such as hospitals have a responsibility to assist pediatric oncologists in coping with this challenging aspect of their work. Future research is needed to evaluate how best to implement these changes on the institutional level to help oncologists cope with patient death and the effect of using these strategies on their quality of life.