Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness.

Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.

CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.

Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas.

CONTEXT: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood. OBJECTIVES: To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community. METHODS: A cross-sectional survey was developed, pilot tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted subanalyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables. RESULTS: A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (P < 0.001), receipt of formal pediatric PPHC training (P < 0.001), and higher hospice-level (P = 0.01) and individual-level frequency of PPHC provision (P < 0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life. CONCLUSION: Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.

Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey.

BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. AIM: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. DESIGN: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. SETTING/PARTICIPANTS: Nurses from 71 community-based hospice organizations across 3 states completed the survey. RESULTS: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course (n = 36; 65.5%), on-the-job education (n = 13, 23.6%), online training (n = 5, 9.1%), nursing school (n = 2, 3.6%) and paediatric advanced life support courses (n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course (n = 39; 54.2%) or provision of written materials (n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half (n = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use (n = 48; 25.4%), symptom assessment/management (n = 32; 16.9%), pain assessment/management (n = 28; 14.8), communication (n = 29; 15.3%) and psychosocial assessment/management (n = 28; 14.8). CONCLUSIONS: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.

Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses.

CONTEXT: Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. OBJECTIVE: To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. METHODS: A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region. RESULTS: A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains. CONCLUSION: Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue.

Historically, communication research in pediatric oncology has relied on surveys and interviews, resulting in cross-sectional and retrospective studies constrained by selection, recognition, and recall biases. This systematic review identifies and synthesizes the published literature analyzing primary data from recorded conversations between pediatric oncologists, patients with cancer, and their families, with the following objectives: (1) to identify the extent and content of the evidence base, (2) to describe methodological strategies utilized in the analysis of recorded medical dialogue, (3) to aggregate salient findings, and (4) to generate recommendations for future prospective research related to analysis of medical dialogue in pediatric oncology.