Impact of sociodemographic factors, stress, and communication on health-related quality of life in survivors of pediatric cancer.

BACKGROUND: While most research has largely focused on medical risks associated with reduced health-related quality of life (HRQOL) in survivors, sociodemographic and family factors may also play a role. Thus, we longitudinally examined sociodemographic factors and family factors associated with survivor HRQOL, including adolescent's cancer-specific stress, mother's general stress, and mother-adolescent communication. METHODS: Mothers (N = 80) and survivors (ages 10-23, N = 50) were assessed 5 years following initial diagnosis. Mothers completed measures regarding sociodemographic background adolescent's cancer-specific stress, mother's general stress, mother-adolescent communication, and adolescent HRQOL. Survivors also reported on their own HRQOL. Two hierarchical multiple regressions examined predictors of (a) mother's report of adolescent HRQOL, and (b) survivor's self-report of HRQOL. RESULTS: The final model predicting mother-reported adolescent HRQOL was significant, F(5,74) = 21.18, p < .001, and explained 59% of the variance in HRQoL. Significant predictors included adolescent stress (ß = -.37, p < .001), mothers' stress (ß = -.42, p < .001), and communication (ß = .19, p = .03). The final model predicting survivor-reported HRQOL was also significant, F(5,44) = 5.16, p < .01 and explained 24% of the variance in HRQOL. Significant predictors included adolescent stress (ß = -.37, p = .01) and communication (ß = -.31, p = .04). Sociodemographic factors were not a significant predictor of HRQOL in any model. CONCLUSION: Family stress and communication offer potential points of intervention to improve HRQOL of pediatric cancer survivors from mother and survivor perspectives. While additional research is needed, healthcare professionals should encourage stress management and strong mother-child communication to enhance survivors' long-term HRQOL. Such interventions may be complimentary to efforts targeting the known sociodemographic factors that often affect health.

The study of psychosocial outcomes of parents bereaved by pediatric illness: a scoping review of methodology and sample composition.

OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

Cancer-related stress in childhood cancer survivorship: Prevalence and associations with perceptions of health risks and quality of life.

OBJECTIVE: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL). METHODS: At five years post-diagnosis or relapse, survivors (n = 100; Mage  = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%-100% visual analogue scale, while the PedsQL assessed QoL. RESULTS: CRS was low (M = 1.6-1.8, scale: 1-4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2  = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and -0.15 to -0.03, R2  = 0.28 and 0.32, respectively. There were no indirect effects among fathers. CONCLUSIONS: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates.

The experiences of families of children with cancer during the COVID-19 pandemic: A qualitative exploration.

OBJECTIVES: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps. METHODS: Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family. RESULTS: Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses. SIGNIFICANCE OF RESULTS: Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.

Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors.

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.

The Impact of the COVID-19 Pandemic on the Quality of Life of Children With Cancer.

Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.

Associations between parental depression, communication, and self-worth of siblings bereaved by cancer.

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Clinicians' perspectives on barriers and facilitators to sperm banking in adolescent males with cancer: a mixed-methods study.

PURPOSE: To examine processes, barriers, and facilitators to sperm banking counseling and decision-making for adolescent males newly diagnosed with cancer from the perspective of clinicians who completed Oncofertility communication training. We also identify opportunities for improvement to inform future interventions and implementation. METHODS: A survey (N=104) and subsequent focus groups (N=15) were conducted with non-physician clinicians practicing in pediatric oncology who completed Oncofertility communication training. RESULTS: Most survey participants were confident in communicating about the impact of cancer on fertility (n=87, 83.7%) and fertility preservation options (n=80, 76.9%). Most participants reported never/rarely using a sperm banking decision tool (n=70, 67.3%), although 98.1% (n=102) said a decision tool with a family-centered approach would be beneficial. Primary themes in the subsequent focus groups included variable processes/workflows (inconsistent approaches to consult initiation; involvement of adolescents, caregivers, and various clinician types; assessment of puberty/sexual experience), structural and psychosocial barriers (cost and logistics, developmental, cultural, clinical acuity/prognosis), and facilitators (educational materials, alternative options for banking). Opportunities and strategies for improvement (including fertility preservation in existing research protocols; additional staffing/resources; oncologist education and buy-in; and development of decision tools) were informed by challenges identified in the other themes. CONCLUSION: Barriers to adolescent sperm banking remain, even among clinicians who have completed Oncofertility training. Although training is one factor necessary to facilitate banking, structural and psychosocial barriers persist. Given the complexities of offering sperm banking to pediatric populations, continued efforts are needed to mitigate structural barriers and develop strategies to facilitate decision-making before childhood cancer treatment.

Contraceptive methods and fertility testing in young adult survivors of childhood cancer.

PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.

Improving medication adherence monitoring and clinical outcomes through mHealth: A randomized controlled trial protocol in pediatric stem cell transplant.

Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT. To address this gap, we created the BMT4me© mobile health app, an innovative intervention serving as a "virtual assistant" to send medication-taking reminders for caregivers and to track, in real-time, the child's medication taking, barriers to missed doses, symptoms or side effects, and other notes regarding their child's treatment. In this randomized controlled trial, caregivers will be randomized to either the control (standard of care) group or the intervention (BMT4me© app) group at initial discharge post-HCT. Both groups will receive an electronic adherence monitoring device (i.e., medication event monitoring system "MEMS" cap, Medy Remote Patient Management "MedyRPM" medication adherence box) to store their child's immunosuppressant medication. Caregivers who agree to participate will be asked to complete enrollment, weekly, and monthly parent-proxy measures of their child's medication adherence until the child reaches Day 100 or complete taper from immunosuppression. Caregivers will also participate in a 15 to 30-minute exit interview at the conclusion of the study. Descriptive statistics and correlations will be used to assess phone activity and use behavior over time. Independent samples t-tests will examine the efficacy of the intervention to improve adherence monitoring and reduce readmission rates. The primary expected outcome of this study is that the BMT4me© app will improve the real-time monitoring and medication adherence in children receiving hematopoietic stem cell transplant following discharge, thus improving clinical outcomes.

Regional Cortical Thickness Correlates of Intellectual Abilities Differ in Children With Traumatic Brain Injury Versus Those With Orthopedic Injury in the Chronic Post-Injury Phase.

A decline in intellectual functioning (intelligence quotient [IQ]) is often observed following more severe forms of traumatic brain injury (TBI) and is a useful index for long-term outcome. Identifying brain correlates of IQ can serve to inform developmental trajectories of behavior in this population. Using magnetic resonance imaging (MRI), we examined the relationship between intellectual abilities and patterns of cortical thickness in children with a history of TBI or with orthopedic injury (OI) in the chronic phase of injury recovery. Participants were 47 children with OI and 58 children with TBI, with TBI severity ranging from complicated-mild to severe. Ages ranged from 8 to 14 years old, with an average age of 10.47 years, and an injury-to-test range of ∼1-5 years. The groups did not differ in age or sex. The intellectual ability estimate (full-scale [FS]IQ-2) was derived from a two-form (Vocabulary and Matrix Reasoning subtests) Wechsler Abbreviated Scale of Intelligence (WASI). MRI data were processed using the FreeSurfer toolkit and harmonized across data collection sites using neuroComBat procedures, while holding demographic features (i.e., sex, socioeconomic status [SES]), TBI status, and FSIQ-2 constant. Separate general linear models per group (TBI and OI) and a single interaction model with all participants were conducted with all significant results withstanding correction for multiple comparisons via permutation testing. Intellectual ability was higher (p < 0.001) in the OI group (FSIQ-2 = 110.81) than in the TBI group (FSIQ-2 = 99.81). In children with OI, bi-hemispheric regions, including the right pre-central gyrus and precuneus and bilateral inferior temporal and left occipital areas were related to IQ, such that higher IQ was associated with thicker cortex in these regions. In contrast, only cortical thickness in the right pre-central gyrus and bilateral cuneus positively related to IQ in children with TBI. Significant interaction effects were found in the bilateral temporal, parietal, and occipital lobes and left frontal regions, indicating that the relationship between IQ and cortical thickness differed between groups in these regions. Changes in cortical associations with IQ after TBI may reflect direct injury effects and/or adaptation in cortical structure and intellectual functioning, particularly in the bilateral posterior parietal and inferior temporal regions. This suggests that the substrates of intellectual ability are particularly susceptible to acquired injury in the integrative association cortex. Longitudinal work is needed to account for normal developmental changes and to investigate how cortical thickness and intellectual functioning and their association change over time following TBI. Improved understanding of how TBI-related cortical thickness alterations relate to cognitive outcome could lead to improved predictions of outcome following brain injury.

Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board.

BACKGROUND: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included. However, previous research has utilized the standard translation-backtranslation method with which problems have been noted. PURPOSE: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. METHODS: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. RESULTS: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. IMPLICATIONS FOR PRACTICE AND RESEARCH: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.

Addressing Barriers to Career Development Awards for Early Career Women in Pediatric Psychology.

OBJECTIVE: To provide person and system-level recommendations for supporting early career women in the field of pediatric psychology in writing and submitting National Institutes of Health (NIH) Career Development Award (K award) applications. Recommendations are provided in the context of common barriers, with a focus on practical solutions. METHODS: Publicly available NIH reporter data were compiled to examine rates of funding for Society of Pediatric Psychology (SPP) members. Barriers that women face when initiating programs of research are described and applied to the field of pediatric psychology. RESULTS: Of current SPP members, 3.9% (n = 50) have ever received an NIH K award. Approximately 88.5% of SPP members identify as women, including 89.0% of SPP K award recipients. A table of person- and systems-level recommendations is provided to offer strategies for mentees, mentors/sponsors, institutions, and national organizations to address the barriers discussed. CONCLUSIONS: By addressing gender-specific barriers to submitting K award applications, we hope to increase the number of women K awardees and support the scientific advancement of pediatric psychology.

Implementation of a Post-Baccalaureate Program at a Pediatric Academic Medical Center: A Pathway to Graduate School.

Post-baccalaureate programs are increasingly common and have demonstrated success in preparing students for graduate programs. Most post-baccalaureate programs have a pre-medical focus, and the few existing clinical psychology-focused programs are centered on coursework, situated within a university, costly to students, and/or geared towards career change. The post-baccalaureate program at Nationwide Children's Hospital was created in 2017 and is uniquely positioned within a pediatric academic medical center. The program provides research skill training, mentorship, professional development, and graduate school preparation to employed clinical research coordinators. An early program assessment, based on self-reports, revealed the program attracts diverse participants that are primarily interested in pediatric or child psychology and rate themselves as "somewhat confident" in their current research skills. This manuscript summarizes the three phases of development and key components of the post-baccalaureate program, which can serve as a model to other medical centers interested in developing training programs for research staff, particularly underrepresented racial and ethnic minorities, and those from disadvantaged backgrounds.

Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer.

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.

Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.

Factors associated with mental health service use among families bereaved by pediatric cancer.

OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHODS: Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULTS: Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.

Emotional Well-Being of Pediatric Brain Tumor Survivors and Comparison Peers: Perspectives From Children and Their Parents.

OBJECTIVE: The aim of this study was to examine the emotional well-being of pediatric brain tumor survivors (PBTS) from the perspective of children's self-reports and parents' reports relative to matched comparison peers (COMP) and their parents. It was hypothesized that PBTS would self-report more depression symptoms, loneliness, and lower self-concept than COMP. We also hypothesized that mothers and fathers of PBTS would report more internalizing symptoms and lower total competence for their children. Age and sex effects were examined in exploratory analyses. METHODS: Families of 187 PBTS and 186 COMP participated across 5 sites. Eligible children in the PBTS group were 8-15 years of age and 1-5 years post-treatment for a primary intracranial tumor without progressive disease. COMP were classmates matched for sex, race, and age. RESULTS: PBTS self-reported lower scholastic, athletic, and social competence, but not more depression, loneliness, or lower global self-worth than COMP. Parents of PBTS reported more internalizing symptoms and lower total competence than parents of COMP. With few exceptions, group differences did not vary as a function of child age and sex. CONCLUSION: PBTS reported diminished self-concept in scholastic, athletic, and social domains, while their parents reported broader challenges with internalizing symptoms and total competence. Discrepancies between self-report and parent report require further study to inform targeted interventions for PBTS. Screening survivors for emotional challenges in follow-up clinic or in school setting may help with the allocation of psychosocial support and services for PBTS and their families.

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit.

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.