Journal of Pediatric Hematology-Oncology Nursing最新文献

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.

Background: Children treated for cancer are at risk for long-term neurocognitive late effects that can impact school attainment, employment, and quality of life. Obtaining formal education support can be critical to later success but may depend upon parent knowledge and ability to access needed support. The purpose of this study was to develop and evaluate the psychometric properties of a scale to measure the perceived support that parents received upon their child's return to school during or after cancer treatment. Methods: Exploratory factor analyses evaluated the construct validity of survey items. Cronbach's alpha was used to test the internal consistency and independent t-tests evaluated the concurrent criterion validity of resulting subscales. Results: The exploratory factor analyses resulted in two subscales, Barriers to Supportive School Integration (13 items) and Parent School Integration Knowledge (three items). All items loaded at least 0.49 onto each factor, with Cronbach's alpha values of 0.927 and 0.738, respectively. The Knowledge subscale additionally demonstrated concurrent criterion validity; higher Knowledge subscale scores were found among parents who reported receiving information about treatment-related cognitive/school problems from healthcare providers (p < .001). Discussion: The Parent School Integration Knowledge and Barriers to Supportive School Integration subscales demonstrated preliminary evidence for good construct validity and internal consistency. These subscales may be used in future research to assess parent knowledge, barriers to receiving support, and overall experience of supportive school integration after the diagnosis of pediatric cancer.

Background: There is a paucity of literature regarding health literacy in pediatric oncology. We sought to understand the relationship between health literacy and comprehension of key new diagnosis education concepts in parents of children newly diagnosed with cancer. Methods: Using data from a study evaluating a structured new diagnosis discharge teaching intervention, we performed a secondary analysis to understand the relationship between parental health literacy (Brief Health Literacy Screener: BHLS) and comprehension of six key concepts (child's diagnosis, primary oncologist, and treatment plan; seeking emergent care; fever definition; re-dosing medication). We also evaluated the association between parents self-reported sociodemographic characteristics, preferred learning style (one-item ordinal assessment) and health literacy. We tested relationships using Fisher's exact tests, independent samples t-tests, and Pearson correlations. Results: Fifty parents participated (age 35.4 ± 8.2 years [M ± SD]; 86% female; 60% non-Hispanic white; 24% with ≤high school education); nine parents (18%) scored in the BHLS low literacy range; 80% correctly responded to all six items on the key concepts questionnaire (100% comprehension). Health literacy was not significantly related to 100% comprehension or to individual key concept responses, with the exception of "child's treatment plan" (correct responses: 55.6% in low vs. 100% in adequate literacy groups; p < .001). Parental sociodemographic characteristics and preferred learning styles were not significantly related to health literacy. Discussion:Despite variability in health literacy levels, 80% of the parents comprehended all key concepts, suggesting that the intervention was effective for most parents, regardless of health literacy level.

Background: Home-based cancer care offers new ways of delivering supportive therapies, including post-chemotherapy hydration, traditionally delivered in hospital settings. Understanding how programs are developed and how parents perceive managing care at home offers opportunities to improve services and experiences. Aim: To describe the implementation process and evaluation of a home intravenous hydration program for children with cancer and thus to provide practical information for future initiatives. Methods: Data were prospectively collected on clinical impact, safety indicators, and estimated costs; these were tabulated and analysed. Semi-structured interviews were undertaken with a subset of parents regarding their experience and analysed using content analysis. Results: Over 34 months, 21 children were eligible, and 16 parents were educated and assessed competent with providing home care. All 16 children received home hydration with a median of 5.5 days per child (IQR 6.65 days). This avoided 116 hospital bed-days and associated costs, at an estimated total value of USD $ 105,521, on average saving USD $ 910 per day and USD $ 6,596 per child. There were no adverse events reported, and no child required re-admission to hospital while receiving home hydration. Parents were overwhelmingly positive in their feedback about the program. Verbatim quotes were synthesized under one overarching theme-supporting normality promotes recovery. Conclusion: When adequately trained and well supported, parents highly value providing home-based care to their children. This offers opportunities to improve experiences and outcomes for children and families as well as reduce costs to health services, achieving clinical impact without reducing safety.

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer.

Background: After a hematopoietic stem cell transplantation (HSCT), patients are left with little to no immunity to prevent infections. Importantly, this includes immunity gained from previous exposures, including vaccinations. This loss of immunity is a direct result of previous chemotherapy, radiation, and conditioning regimens the patients receive. It is critical to revaccinate patients post-HSCT to ensure protective immunity against vaccine-preventable diseases. Before 2017, all patients at our institution were referred to their pediatrician at approximately 12-month post-HSCT to be revaccinated. Clinical concern was raised at our institution regarding nonadherence and errors in vaccine schedules. Methods: To understand the magnitude of the problem with revaccination, we performed an internal audit of post-vaccine adherence in patients who received an HSCT between 2015 and 2017. A multidisciplinary team was developed to review the audit results and make recommendations. Results: This audit revealed delays in the initiation of the vaccine schedule, incomplete adherence to the recommended revaccination schedule, and errors in administration. Discussion: Based on the review of the data, the multidisciplinary team recommended an approach for systematic assessment of vaccine readiness and centralization of the administration of vaccines to be done within the stem cell transplant outpatient center.

Background: Family factors, such as household income and parental psychosocial distress, have been associated with quality of life in children with cancer. However, relationships between parent anxiety and child health-related quality of life (HRQoL) have not been evaluated in children with advanced cancer. Objective: To examine relationships between parent anxiety and both parent-reported and child self-reported HRQoL for children with advanced cancer. Method: Children (aged 5-17 years) with relapsed or refractory cancer and their parents participated in this single-institution cross-sectional study. Parents completed measures of their own baseline anxiety (State-Trait Anxiety Inventory-Trait [STAI-T] form) and their ill child's HRQoL (PedsQL Generic and PedsQL Cancer, parent report). Children completed age-specific PedsQL Generic and PedsQL Cancer, child report. Spearman's rho coefficients assessed correlations between total parent STAI-T score and both parent-reported and child-reported HRQoL scales. Results: Twenty children (M_age = 9.5 years, 50% female) and their 20 parents (90% mothers) participated. The strongest and statistically significant (p < .05) correlations were inverse associations between parental trait anxiety and parent-reported child psychosocial HRQoL (r_s = -.54), emotional functioning (r_s = -.49), school functioning (r_s = -.45), and child pain and hurt (r_s = -.45). Correlations of parental anxiety with all dimensions of child-reported HRQoL were generally smaller (r_s < .40), positive, and not statistically significant (p > .05). Discussion: Given the inverse correlations between parental anxiety and child psychosocial HRQoL, assessment of parent mental health needs and access to interventions should be provided routinely for parents of children with advanced cancer.

Background: Parents of children newly diagnosed with cancer require specialized knowledge and skills in order to safely care for their children at home. The Children's Oncology Group (COG) developed expert consensus recommendations to guide new diagnosis education; however, these recommendations have not been empirically tested. Methods: We used a sequential two-cohort study design to test a nurse-led Structured Discharge Teaching Intervention (SDTI) that operationalizes the COG expert recommendations in the setting of a tertiary children's hospital. Outcomes included parent Readiness for Hospital Discharge Scale (RHDS); Quality of Discharge Teaching Scale (QDTS); Post-Discharge Coping Difficulty (PDCD); Nurse Satisfaction; and post-discharge unplanned healthcare utilization. Results: The process for discharge education changed significantly before and after implementation of the SDTI, with significantly fewer instances of one-day discharge teaching, and higher involvement of staff nurses in teaching. Overall, parental RHDS, QDTS, and PDCD scores were similar in the unintervened and intervened cohorts. Almost 60% of patients had unplanned healthcare encounters during the first 30 days following their initial hospital discharge. Overall nurse satisfaction with the quality and process of discharge education significantly increased post-intervention. Discussion: Although the structure for and process of delivering discharge education changed significantly with implementation of the SDTI, parent RHDS and QDTS scores remained uniformly high and PDCD scores and non-preventable unplanned healthcare utilization remained similar, while nurse satisfaction with the quality and process of discharge education significantly improved, suggesting that further testing of the SDTI across diverse pediatric oncology settings is warranted.

Background: Many health care organizations offer pediatric infusions in outpatient infusion centers or, as in our organization, in a hospital-based outpatient Pediatric Infusion Therapy Center (PITC). When restrictions related to the COVID-19 pandemic decreased our PITC appointment capacity by 40%, other patient and family satisfaction issues were exacerbated. We implemented a new approach to pediatric infusions with the aim of improving patient and family satisfaction and reducing the amount of time in an appointment itinerary without negatively affecting patient safety. Methods: Our team used a phased approach to pilot the administration of short chemotherapy infusions in the same outpatient clinic examination rooms where consultation and routine office visits were conducted. Patients saw their specialist for an examination and, if clinically indicated, their infusion was administered in the same room. Appointment itineraries were then completed. The team tracked efficiency, satisfaction, and safety metrics related to the new process. Results: All efficiency metrics improved. No harm came to the 49 unique patients who received a total of 184 infusions. Patient appointment itineraries were shortened by an average of 1.03 hr. Satisfaction survey responses indicated a clear preference (93%) for the new process. Discussion: The novel approach of offering short infusions in outpatient clinic examination rooms provides an opportunity to ease capacity constraints and further increase patient and family satisfaction. This method may be especially helpful for health care organizations when external influences (e.g., lack of physical space, challenging patient volumes, and pandemics) necessitate a change.

Background: Specific knowledge is required in pediatric oncology, and specialization of nurses has been identified as a priority. In Sweden, a national program in pediatric oncology nursing has been offered since 2003. The aim of this study was to gain knowledge of nurses' perceptions of the impact of this educational program. Methods: Eighty nurses who had completed the educational program in three cohorts (2012-2019) were invited to participate in this cross-sectional survey. An electronic study-specific questionnaire containing multiple-choice questions was used. Data were analyzed using descriptive statistics and correlation tests. Results: Fifty-nine (74%) nurses completed the survey, of whom 98% responded that they would recommend the program to a large/fairly large extent. At the time of the survey, 15 (25%) participants had left pediatric oncology care. Among the remaining 44, 31 (71%) of the nurses were working bedside, and 13 (42%) of these combined this with a special position (e.g., consultant nurse). The education resulted in career advancement, as the number of nurses with special positions increased following completion of the program, from 20% to 59%. The vast majority stated that the knowledge gained from the education contributed to increased confidence in interactions with the children/families. Discussion: Continuing education of nurses in pediatric oncology has an impact on career opportunities in clinical practice and contributes to nurses' confidence and professional work. However, education is not enough to retain competent nurses. Employers need to be aware of the role of the work environment, aspects of work-life balance and career paths.