Nursing Presence in Pediatric Oncology: A Scoping Review

Background: Nursing presence creates meaningful and trusting relationships that facilitate healing for the patient and enhances the nurse's clinical experience. Although nursing presence has been linked to better health outcomes especially in chronic illnesses and end-of-life, little is known about its contribution in pediatric oncology. Purpose: The purpose of this scoping review was to explore how nursing presence is understood and expressed in pediatric oncology. Methods: Arksey and O’Malley’s (2005) framework was used to guide the review, with Clarke and Braun’s (2013) thematic analysis process used for collating, summarizing, and reporting the results. Key search terms were developed for searches between January 1999 and July 2020 in CINAHL, MEDLINE, and Psych INFO databases. Initially, 4,357 studies were identified with a final sample of nine articles meeting specific inclusion and exclusion criteria. Gray literature retrieved from the search was used to inform the review. Findings: Most notably, there is a limited understanding of nursing presence in pediatric oncology setting. However, findings revealed five themes that can be identified with nursing presence: Being With or Being There, Therapeutic Relationships, Communication, Family-centered Approach, and Perceived Outcomes of Nursing Presence. Nurses in pediatric oncology are in an ideal position to provide nursing presence in order to improve the quality of care in pediatric oncology settings. Discussion: There is a need to establish a comprehensive evidence-based understanding of the construct of nursing presence in pediatric oncology that health care providers can utilize to enhance their clinical practice and health research.

The Influence of a Peer Support Camp on Mitigating Emotional Distress in Siblings of Children With Cancer

Background: Siblings of children with cancer often experience anxiety and posttraumatic stress symptoms (PTSS), which negatively impact their self-esteem due to emotionally upsetting circumstances. The purpose of this longitudinal quantitative study was to investigate changes in anxiety, PTSS, and self-esteem of youth who participated in a peer support camp for siblings of children with cancer. Methods: A longitudinal study examined changes over time. Data were collected from 32 sibling surveys pre-, post-, and three months after camp. Siblings completed assessments to measure anxiety, PTSS, and self-esteem. A repeated measures ANOVA or Friedman Test was conducted to identify changes across the three data points for each outcome measured. Post hoc comparisons using paired sample t-tests or Wilcoxon Signed-Rank tests were conducted. Results: Significant improvements in anxiety; T1 and T2 ( p < .000); T1 and T3 ( p < .000). Significant decrease in PTSS; T1 and T2 ( p = .001); T1 and T3 ( p = .011). Significant improvement in self-esteem scores for older participants (ages 10–16); T1 and T2 ( p < .000). Significant improvement in self-esteem for younger participants (ages 7–9); T1 and T3 ( p = .005). Discussion: The data generated in this study expand knowledge about the influence of peer support camps on reducing the emotional distress of siblings of children with cancer. The findings warrant further research on the long-term impact of such camps, the value of repeated participation, differences between bereaved and nonbereaved siblings, the phase of the cancer experience, and elements of the camp that have the most impact.

Symbols of Hope on Pediatric Oncology Ward: Children's Perspective Using Photovoice

Background Hope nurtures confidence and enhances positivity. It is known to be a critical factor in illness, recovery and healing. This study aimed to identify the views of hospitalized children with cancer about the circumstances and factors that create hope for them in the oncology ward. Methods: This qualitative study explored children's experiences using Photovoice, which is an arts-based approach. Twenty children aged 6–12 years diagnosed with various cancers at a Pediatric Hospital in Tehran, Iran, participated in this study. Participants were requested to take photographs of objects, circumstances, or anything that gave them hope or represented a sign of hope in the oncology ward. The photographs were then used to facilitate face-to-face interviews with these children. Data were analyzed using thematic analysis. Results: Data analysis revealed six main themes: emotional connectedness with nursing staff; the playroom as a means to soften the hospital space; the presence of a parent; symbols of recovery; a touch of nature in the hospital setting; and escaping the hospital cage. Discussion: Hopefulness among children can emanate from diverse events and circumstances within the hospital environment. Nurses and physicians need an understanding of children's perspectives to design interventions to improve hopefulness among hospitalized children with cancer.

The Experiences of Chinese Children 5- to 7-year-old during cancer Treatment Reflected Through Interviews and Drawings

Background: For children with cancer, the experience during treatment can be challenging. There is a limited number of studies on self-reported treatment experiences of younger Chinese children with cancer using qualitative methods. Objectives: This study aimed at exploring the experience of Chinese children aged 5 to 7 years during cancer treatment reflected through interviews and drawings. Methods: This study used a descriptive qualitative design with the technique of “draw-and-tell.” Participants were enrolled from the pediatric oncology inpatient department of one national children's medical center in China. They were asked to draw a picture of “your feelings in the hospital.” An inductive content analysis approach was used. Results: Twelve participants were enrolled (8 male, mean age 5.7 years). Four themes were established: (1) suffering from adverse treatment effects; (2) perceiving changed relationships; (3) being thankful for others; and (4) trying out coping strategies. Conclusion: Chinese children aged 5 to 7 years expressed multiple cancer treatment impacts. They appreciated others’ support and had their own way to cope with treatment demands. The authors also extended the dynamic nature of using the “draw-and-tell” methodology. Study findings highlight the importance of inviting and hearing the voice of young children during their cancer treatment, with particular consideration of the influence of disease, treatment, child development, family dynamics, and culture.

“Parenting Beyond the Veil”: The Continued Parenting Relationship After a Child's Death Due to Cancer

Background: Childhood cancer is the leading cause of illness-related death, leaving thousands of parents to experience bereavement. This article presents select findings about the nature of the continued parenting relationship, which is an essential theme of the parental bereavement experience. Method: Heideggerian phenomenology provided the philosophical underpinnings of this study, which aimed to describe the lived experience of bereaved parents who experienced the death of a child due to cancer. Van Manen’s (1997) method guided data collection and analysis. Six parents participated in interviews to share what it has been like for them since their child's death. The researcher wrote analytic memos, documented detailed field notes, and used a member checking process to ensure trustworthiness of findings. Results: A structure of the lived experience of parental bereavement emerged, which included the essential theme of the continued parenting relationship. The parenting relationship continues throughout a parent's lifetime in spite of the child's physical absence, albeit in a different manner. This different nature of parenting is known as parenting beyond the veil. Bereaved parents continue to parent beyond the veil by engaging in meaningful activities, seeking activities that strengthen a deep connection with the child, and being open to comforting signs that enhance their continued relationship. Discussion: Parents believe sharing their experience can help nurses and other professionals understand the importance of their continued parenting relationship and their need to parent beyond the veil so that they can provide high quality care to bereaved parents in the future.

Evidence-Based Recommendations for Nurse Monitoring and Management of Immunotherapy-Induced Cytokine Release Syndrome: A Systematic Review from the Children’s Oncology Group

Children with B-precursor acute lymphoblastic leukemia and B-cell lymphoma, particularly those with relapsed or refractory disease, are increasingly enrolled on phase II and phase III clinical trials studying immunotherapies. These therapeutic agents may be associated with a high risk of cytokine release syndrome (CRS), and nurses lack standardized guidelines for monitoring and managing patients with CRS. Six studies and one clinical practice guideline were included in this systematic review that examined the evidence of CRS following administration of chimeric antigen receptor T-cell therapy or the bi-specific T-cell engager antibody, blinatumomab. Six nursing practice recommendations (five strong, one weak) were developed based on low or very low-quality evidence: three reflect preinfusion monitoring, one focuses on monitoring during and postinfusion, and three pertain to the nurse's role in CRS management.

Timing of Pegfilgrastim: Association with Febrile Neutropenia in a Pediatric Solid and CNS Tumor Population

Background: While recommended timing of pegfilgrastim administration is ≥24 h after chemotherapy, patient barriers to next day administration, available adult evidence, and pharmacokinetic data have led to earlier administration in some pediatric patients with solid and central nervous system tumors. The purpose of this study was to compare patient outcomes by timing of pegfilgrastim after chemotherapy. Methods: A retrospective chart review examined timing of 932 pegfilgrastim administrations to 182 patients, 0–29 years of age. The primary outcome was febrile neutropenia (FN); the secondary outcome was neutropenic delays (ND) ≥7 days to next chemotherapy cycle. To account for multiple pegfilgrastim administrations per patient, a generalized mixed model was used with a logit link for the dichotomous outcomes (FN & ND), timing as the dichotomous independent variable, and random effect for patient. Results: FN occurred in 196 of 916 cycles (21.4%); and ND in 19 of 805 cycles (2.4%). The fixed effect of pegfilgrastim administration < or ≥24 h after chemotherapy was not significant, p = .50; however, earlier or later than 20 h was significant, p = .005. FN odds were significantly higher when pegfilgrastim was given <20 h (OR 1.78, 95% CI: 1.19–2.65) after chemotherapy, which may be attributable to differences in chemotherapy toxicity regardless of pegfilgrastim timing. Discussion: While attempts should be made to administer pegfilgrastim ≥24 h after chemotherapy, if barriers exist, modified timing based on individual patient characteristics should be considered. Prospective randomized trials are needed to identify lower risk patients for early pegfilgrastim administration.

Binge Drinking, Tobacco, and Marijuana Use Among Young Adult Childhood Cancer Survivors: A Longitudinal Study

Objectives: Substance use among young adult childhood cancer survivors (YACCSs) has been found to increase during survivorship, resulting in increased risk of developing long-term negative health outcomes. This investigation sought to determine various risk and protective factors of tobacco, alcohol, or marijuana use over time among a sample of YACCSs. Methods: 127 YACCSs (57% Hispanic, 55% female, average age at diagnosis 12.4 years) who were diagnosed with any cancer type (except Hodgkin lymphoma) at two large pediatric medical centers in Los Angeles County between 2000 and 2007 responded to two surveys separated by ∼5 years. Bivariate logistic regression models were used to assess independent clinical and psychosocial Time 1 variables associated with each substance use outcome at Time 2. Time 1 variables significant at p < .10 were included in multivariable logistic regression models for each Time 2 substance use variable. Results: Rates of 30-day use increased over time for binge drinking alcohol (from 25.6% to 37.7%), marijuana (from 10.6% to 22.1%), and cigarette/tobacco (from 8.9% to 12.2%). Of the following Time 1 variables, marijuana use, cigarette use, and binge drinking were associated with Time 2 marijuana, cigarette, and binge drinking, respectively. Of the following clinical factors, receipt of more intensive cancer treatment was associated with decreased tobacco use. All other psychosocial and clinical factors analyzed were not associated with any increase or decrease in substance use. Conclusions: A greater emphasis on early health education efforts regarding the health risks of tobacco, alcohol, and marijuana use is needed in this at-risk population.

Pediatric Hematology/Oncology Nurse Spirituality, Stress, Coping, Spiritual Well-being, and Intent to Leave: A Mixed-method Study

Background: Intense emotional demands of oncology nursing create a stressful work environment and increase the likelihood of leaving. The study aims to explore, describe, and understand how pediatric hematology/oncology nurses caring for chronically ill or dying patients use their spirituality to cope with job stress, maintain spiritual well-being (SWB), and continue to work in this specialty. Methods: A concurrent mixed-method research design consisted of a web-based survey and interview. Data collection included demographics, intent to leave questions, and four valid and reliable research instruments measuring spirituality, stress, coping, and SWB. A responsive interview guide directed interviews. Results: Quantitative analysis ( n = 130) revealed moderate to high levels of spirituality, moderate stress, coping, and SWB. Stress and SWB were weakly, inversely correlated ( r = −.221, p = .011) indicating lower stress was associated with greater SWB. Coping and SWB were weakly, positively correlated ( r = .248, p = .005) indicating greater coping was associated with greater SWB. An intent to leave in the next year was reported by 5.4%. Emerging themes from qualitative data ( n = 22) included faith-informed or existential spirituality, work environment, and emotional/psychological stressors such as feeling overwhelmed or witnessing suffering and coping through self-care and spirituality. Dimensions of SWB included spiritually based coping and life’s meaning and purpose. Intent to leave was related to the work environment or travel distance. Discussion: A nurse’s spirituality offers a mechanism for coping with accumulated losses and grief encountered in clinical practice and in turn supports SWB.

Implementing and Evaluating a Standardized New Diagnosis Education Checklist: A Report From the Children's Oncology Group

When a child is newly diagnosed with cancer, parents report feeling overwhelmed with the amount of information that they must process in order to safely care for their child at home. The Children’s Oncology Group (COG) Nursing Discipline has focused on examining current practices for educating families of children newly diagnosed with cancer, and developing tools to enhance the process of patient/family education at the time of diagnosis, including development of a COG Standardized Education Checklist, which classifies education into primary, secondary, and tertiary topics. The COG Nursing Discipline awarded nursing fellowships to two doctorally prepared nurses practicing at two distinct COG institutions to evaluate the checklist implementation. This project addressed the primary topics on the checklist essential to safely care for the child at home following the first hospital discharge. Checklist feasibility was determined by the proportion of checklists completed. Checklist fidelity was determined by review of documentation on the checklist regarding educational topics covered, learner preferences, and methods used. Checklist acceptability was assessed through parent/caregiver and nurse feedback. Project implementation occurred over a 5-month period and involved 69 newly diagnosed families. Implementation of the checklist was feasible (81%), with moderate fidelity to checklist topics taught across the two sites. Verbal instruction and written documentation were the most prevalent form of education. The return rate for the parent/caregiver and nurse acceptability questionnaires was moderate to low (68% and 12%, respectively), parent/caregiver feedback was positive and acceptability among responding nurses was high, with 92% of nurses identifying the primary checklist as useful.