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Objective: This study examined the associations of anxiety and drinking motives with hazardous and binge alcohol use among young adults., Participants: We recruited young adults (N = 182, mean age 25) between November 2020 and December 2020., Methods: Linear regressions were used to evaluate relationships among hazardous alcohol use (US Alcohol Use Disorders Identification Test-C [USAUDIT-C]), binge drinking (Alcohol Intake Questionnaire [AIQ]), PROMIS-Anxiety, COVID-19 related anxiety (CAS), and the drinking to cope with depression and anxiety subscales of the Modified Drinking Motives Questionnaire., Results: Sixty-two percent of participants reported hazardous drinking (USAUDIT-C score > 4). PROMIS Anxiety and CAS scores were 63.7 and 1.0, respectively. Scores were positively associated with drinking patterns. However, the drinking to cope with depression motive significantly mediated these associations., Conclusions: After the onset of the pandemic, hazardous and binge drinking patterns among young adults were associated with drinking to cope with depression rather than anxiety.

Purpose: To develop an exploratory survey measuring family caregiver use of elements of pain assessment in people living with dementia (PLWD)., Method: A survey development process was conducted: Phase 1 (item development), Phase 2 (content validity), and Phase 3 (face validity)., Results: A set of survey questions was developed, and their wording modified after review by experts in survey question writing. Content experts rated the exploratory questions as having item content validity indices (I-CVI) from 0.25 to 1. Questions were further tested with a sample of family caregivers ( N = 10) who supported face validity and content validity for questions with a low I-CVI. The final survey has eight quantitative and two free-text questions., Conclusion: This survey can be used for exploratory purposes to describe pain assessment by family caregivers of PLWD; however, further validation is needed for uses beyond exploratory work. [ Research in Gerontological Nursing, 17 (6), 308-316.].

Background: Legacy building is a priority for pediatric oncology. Storytelling is one strategy to help children document their legacies. Understanding story content would advance knowledge of how children want to be remembered but this has yet to be explored. This study explored content of digital stories created by children with advanced cancer. Method: Facebook advertisements were used to recruit families of children (7-17) with relapsed/refractory cancer to participate in a randomized controlled trial testing a legacy intervention through storytelling. Parent-child dyads ( N  = 150) were randomly assigned to an intervention or usual care group. A web program guided children to answer legacy questions and upload photographs, movies, and music. Families received the final digital stories. Experienced qualitative coders developed a hierarchical coding system to identify major categories/subcategories within 78 stories. Results: Stories included 1,516 unique story entries, including text, photographs, and movies. Two major categories emerged from the data: (a) story entry medium and (b) story content. Photographs frequently reflected people, objects, pets, and places while text often described personal preferences, goals, dreams, and other people. The story content overall included references to (a) people, (b) setting/location, (c) cancer, (d) objects/activities, and (e) expression of emotions/beliefs. Exemplar quotes, counts, and frequencies for each category are reported. Discussion: Children documented their legacies through stories that emphasized the value of family relationships and children's desires to be known for personal traits/preferences. Children chose to include cancer in their stories, indicating that cancer is a part of how children perceive their legacies. Registration Number : ClinicalTrials.gov NCT04059393., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Social contexts (e.g., family, friends) are important in predicting and preventing loneliness in middle childhood (MC) and adolescence; however, these social contexts were disrupted during the COVID-19 pandemic. Comparison of social context factors that may differentially contribute to loneliness at each developmental stage (MC vs. adolescence) during the COVID-19 pandemic have been overlooked. This study examined longitudinal predictors of loneliness, including social contexts and COVID-19 impact, within MC (8-12y) and adolescence (13-17y). Parents reported on demographic information, and their children completed surveys on COVID-19 impact, loneliness, and family functioning using the COVID-19 Exposure and Family Impact Survey (CEFIS), the NIH Toolbox Loneliness (Ages 8-17) measure, and the PROMIS Family Relationships Short Form 4a measure, respectively. Regression models examined time one (T1; May-June 2020) predictors of time two (T2; November 2020-January 2021) MC child (n=92, Mage=10.03) and adolescent (n=56, Mage=14.66) loneliness. For the MC child model, significant predictors of higher loneliness included worse family functioning as well as higher COVID-19 impact and lower family income. On the other hand, higher adolescent loneliness was significantly predicted by not having married/partnered parents and was marginally significantly predicted by higher COVID-19 impact. The regression model with the full sample and interaction terms revealed no significant interactions, but that lower family functioning and higher COVID-19 impact were significant predictors of higher loneliness. Lower family income and lower in-person communication were marginally significant predictors of higher loneliness in the combined interaction model. Lastly, further exploratory mediation analyses displayed that family functioning significantly mediated the relationship between COVID-19 impact and T2 loneliness only for MC children and the full sample. Results support future interventions focused on optimizing family functioning to help mitigate MC loneliness in the context of adversity, such as a global pandemic., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Benhayoun et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers ( n = 231; 95.7% female) and their 8-17-year-old children ( n = 231; 54.5% male; M age = 11.87; SD age = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Aim: To provide an analysis of legacy and legacy-oriented interventions in paediatric healthcare., Design: Walker and Avant's method of concept analysis., Methods: Using Walker and Avant's method, three defining attributes of the concept were determined, followed by antecedents, consequences, and empirical referents of legacy., Results: In paediatrics, legacy is co-authored in relationships, has the capability to outlive the person or event it represents, and elicits the essence of a person or experience. Receiving legacy-oriented interventions are not a prerequisite for having a legacy, nor is death., Conclusion: Engaging in purposeful, individualized legacy-oriented interventions can improve coping in paediatric patients, families, and providers. By understanding the concept of legacy, providers are better equipped to provide care honouring the unique personhood, relationships, and strengths of children and families in even the most dire circumstances., Implications for the Profession And/or Patient Care: Understanding the scope and purpose of legacy in paediatrics assists providers in improving patient- and family-centred outcomes by designing interventions that facilitate long-term coping in patients facing a loss of or significant change in health, normalcy, or life., Impact: Legacy-oriented interventions are provided at most children's hospitals in the United States, yet no widespread consensus on foundation or scope has been determined. This concept analysis provides evidence-based guidelines for policy and practice in creating legacy for and with children, providing opportunities to improve quality of care for young patients and their families around the world., Reporting Method: N/A., Patient or Public Contribution: No patient or public contribution., (© 2023 John Wiley & Sons Ltd.)

Purpose: This qualitative study aimed to explore the perspectives of adolescents and young adults (AYA) on a planned nurse-patient dyadic storytelling intervention. Background: Cancer is a highly distressful event for AYA. AYA with cancer experience multidimensional suffering while dealing with their developmental transition from adolescence to young adulthood. Their unique needs require appropriate, well-tailored psychosocial support. Nurses can provide such support through storytelling approaches., Method: AYA cancer survivors participated in cross-sectional qualitative interviews to provide feedback on the nurse-patient storytelling intervention model., Analysis: Qualitative content analysis was used to interpret and categorize the data., Findings: Barriers and facilitators of the intervention emerged. Themes related to barriers included (a) the disadvantages of an online program, (b) the limitations of the in-person program, (c) interacting with nurses, (d) sharing personal stories with others, and (e) the timing of the program. Themes regarding facilitators included (a) benefits to AYA with cancer, (b) benefits to nurses, (c) benefits of online/in-person programs, and (d) willingness to participate. Conclusions: AYA with cancer may benefit from the nurse-patient dyadic storytelling intervention. Developing innovative methods to optimize and customize interventions based on preferences is essential. Future research should involve nurse feedback and tailored approaches for AYA 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.

An emerging body literature exists highlighting the use of Digital Storytelling as an educational, and/or therapeutic intervention. Authors of this manuscript have studied Digital Storytelling as a narrative bereavement intervention designed to help individuals make meaning of adverse life events, like the death of a family member. Until recently, Digital Storytelling is typically delivered in person. The purpose of this article is to describe the steps to implementing Digital Storytelling as a bereavement intervention in a completely virtual setting, using Zoom technology. Best practices and lessons learned for the virtual delivery of Digital Storytelling are provided., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective: To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design: Randomized controlled study. Setting/Subjects: Participants were children ( n  = 19) and parents ( n  = 21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Results: Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion: Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.

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).

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: r pb = 0.27; p = 0.02; fathers: r pb = 0.32; p = 0.02; siblings: r pb = 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, R 2 = 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, R 2 = 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 R 2 = 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.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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.

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness. Data were collected via social media from May to July 2020. According to parent proxy and child self-report, United States children experienced worse quality of life ( p  < 0.0001; d  = 0.45 and 0.53) and greater child-reported loneliness ( p  < 0.0001) when compared to normative, healthy samples (i.e., children who do not have a chronic medical condition). Older children ( r  = 0.16, p  = 0.001) and female children ( r  = 0.11, p  = 0.02) reported greater loneliness. Higher child-reported family functioning scores were associated with better quality of life ( r  = 0.36, p  < 0.0001) and less loneliness ( r  = -0.49, p  < 0.0001). Moderated mediation analyses indicated the indirect effect of parent COVID impact on the association between COVID exposure and child quality of life was weaker in the context of better family functioning. Results of this study raise concern for the short-and long-term sequelae of the pandemic on the physical and mental health of children. Healthcare providers and researchers must find new and innovative ways to protect the well-being of children. Strengthening family functioning may buffer the effects of the pandemic and improve overall quality of life in our "COVID Kids.", Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Skeens, Hill, Olsavsky, Ralph, Udaipuria, Akard and Gerhardt.)

Purpose: The purpose of this study was to explore relationships between postoperative opioid administration and posttraumatic stress symptoms (PTSS) in preschool-aged children surviving cardiac surgery., Design and Methods: This was a cross-sectional, descriptive study using survey administration and medical chart review. Primary caregivers of children aged three to six years who underwent cardiac surgery at our institution between 2018 and 2020 were invited to participate. Opioid administration was calculated according to morphine milligram equivalents and indexed to the child's body weight. Caregivers completed the Young Child Posttraumatic Stress Disorder Checklist to explore child PTSS. We used correlational methods to assess the strength and direction of relationships between postoperative opioid administration and child PTSS., Results: We did not find a statistically significant relationship between total postoperative opioid administration and child PTSS. When analyzing individual opioid agents, morphine did show a significant inverse relationship to YCPC scores (r s = -.57, p = .017) in children with single ventricle physiology., Conclusions: Total postoperative opioid administration was not statistically significantly related to child PTSS in our sample. Differing patterns of association were noted among children with single- versus bi-ventricular physiology. Postoperative morphine administration was favorably associated with PTSS in children with single-ventricle physiology., Practice Implications: Nurses caring for preschool children who undergo cardiac surgery should anticipate the potential development of PTSS in their patients. Studies using larger sample sizes and longitudinal design are needed to replicate the significant relationship between morphine administration and PTSS in preschoolers with single-ventricle physiology., Competing Interests: Declaration of Competing Interest Kelly Davis reports financial support was provided by Vanderbilt Institute for Clinical and Translational Research., (Copyright © 2022. Published by Elsevier Inc.)

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.

The COVID-19 pandemic has created unique challenges for recruitment of adults and children into clinical research. The sudden onset of stay-at-home orders and social distancing enacted in much of the United States created sudden barriers for researchers to recruit participants in-person. Recognizing the critical need to understand the impact of COVID-19 on children and families in real time, studies required an alternative approach. The present study sought to develop methods and establish the feasibility of utilizing Facebook's targeted advertising to enroll schoolaged children and their parents for a study examining the impact of the COVID-19 pandemic on families. This study used an 8 week pay-per-click advertisement approach via Facebook for research recruitment. Parents of children age 8 to 17 were invited and asked to include their child. Standardized measures were included for parents and children. Zip code targeting was used to increase diversity in participants. The ad campaign reached 213,120, yielding 3563 clicks, 684 parent participants, 494 child participants and a 26% conversion rate over eight weeks. The cost-per-click was $0.64, and cost-per-participant was $3.30 and $4.60 for parents and children, respectively. This nationwide study successfully used social media to recruit a robust nationwide sample of parent-child dyads during the COVID-19 pandemic. Social media recruitment mitigated typical time and engagement barriers for participants while also circumventing social and physical distancing orders due to the pandemic which allowed for real time assessment of the pandemic's effects on families. Future consideration should be given.to social media as a research recruitment methodology., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Purpose: A risk of percutaneous transthoracic needle biopsy (PTNB) is hemoptysis which can range from mild to life-threatening. The reported occurrence of hemoptysis is 1.7-14.5% and the demographic, patient, and procedure characteristics have not been extensively described. The purpose of this study was to assess the associations of demographic, patient, and procedure characteristics with the severity of hemoptysis., Materials and Methods: A single-institution, single group, retrospective, electronic medical record (EMR) review was performed on all hemoptysis events occurring between 2008 and 2018. Demographic, clinical, and procedure variables were extracted from EMRs. Outcome of hemoptysis events was graded using Common Terminology Criteria for Adverse Events (CT-CAE). Mild-moderate and severe hemoptysis were defined as CT-CAE classifications of 1-2 and 3-5, respectively. Associations were generated using logistic regressions and Likelihood Ratio Chi-Square tests., Results: In ten years, 14,665 PTNB resulted in 231 hemoptysis events occurring in 229 patients; 12.7% (n=29) of those were severe. The strongest and statistically significant variables associated with an increased likelihood of a severe event, if an event occurred, were cigarette pack years (OR=1.02, 95% C.I.=1.01-1.04, P=.020); history of chronic obstructive pulmonary disease (COPD) (OR=3.68, 95% C.I. = 1.53-8.82, P=.003); core biopsy technique (OR=8.13, 95% CI=1.07, 61.40, P=.042), and larger diameter needle (20g vs. 18g: OR= 2.60 (1.09, 6.17), P=.031)., Conclusions: PTNB-associated hemoptysis was an uncommon event that was rarely life-threatening. The extent of the patient's smoking history, the diagnosis of COPD, and core biopsy technique were associated with an increased likelihood of severe hemoptysis.

Aim: Little research exists on coronavirus (COVID-19) vaccine hesitancy among caregivers of children with cancer. We aimed to (a) describe vaccine hesitancy in parents of children with cancer for both their child and self, and (b) examine the mediating role of parent-reported COVID impact on the association between COVID exposure and vaccine hesitancy., Procedure: We conducted a national survey of parents of children with cancer via Facebook and Momcology, a pediatric cancer community-based organization recruited February-May 2021. Parents completed standardized measures online. A series of mediation models assessed the role of COVID-19 impact (e.g., effects on parenting and well-being) on associations between COVID-19 exposure (e.g., direct/indirect exposure) and vaccine hesitancy. Moderation models examined the role of treatment status, COVID-19 exposure, impact, and vaccine hesitancy., Results: Parents (n = 491; 90% mothers; 93% White) reported moderate vaccine hesitancy (M = 2.08, SD = 0.76). Specifically, 18.5% (n = 90) reported they would not vaccinate their child, and 24.4% (n = 119) would only consider vaccination. Parents expressed higher concerns about vaccine side effects for their children (M = 3.01, SD = 0.95) than for themselves (M = 2.61, SD = 1.03; t[479] = 9.07, p < .01). Mediation analysis revealed a significant indirect effect of impact (95% CI [-0.013, -0.001]) on the association between higher exposure and higher vaccine hesitancy (b = .02, p = .06). There was no moderating effect of treatment status. Income remained a significant covariate (b = -.11, p < .01)., Conclusion: Lower parent-reported COVID exposure, higher COVID impact, concern for side effects, and lower income may be important factors related to vaccine hesitancy among parents of children with cancer. Providers of childhood cancer survivors should address vaccine hesitancy and potential health risks., (© 2022 Wiley Periodicals LLC.)

Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.

Background: Across disciplines and within higher educational systems, assessing postgraduate outcomes is essential for evaluating doctoral programs, including research-intensive nursing science doctoral programs. However, there are limited reports regarding methods and metrics related to postgraduate longitudinal evaluation of research-focused nursing doctoral programs., Purpose: The purpose of this paper is to summarize studies in the area of postgraduate outcome assessment and provide recommendations regarding outcome methods and metrics for evaluating the effectiveness of research-focused nursing doctoral programs., Methods: PubMed/Medline, CINHAL Complete, and Google Scholar databases were searched using key words including PhD program, doctoral program, longitudinal evaluation, evaluation, program evaluation, PhD alumni survey, education outcomes and PhD program outcomes. We excluded non-English and full-text articles that were not available for review., Discussion: Based on a review of the literature, there are few reports on methods and questionnaires for postgraduate outcome assessment. There is a critical need to develop standardized core metrics/questions, longitudinal assessments, and a shared data repository. The latter will allow for comparisons across nursing doctoral programs., Conclusion: Robust standardized longitudinal assessment of nursing doctoral programs is a necessary step for comparison across programs and re-envisioning the nursing doctoral education of the future., (Copyright © 2022 Elsevier Inc. All rights reserved.)

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: The burden of relapsed/refractory childhood cancer takes an immense toll on ill children and their caregivers, jeopardizing quality of life. Animal-assisted interventions (AAIs) have shown promising benefits for children with chronic conditions and their families. Little is known about child and caregiver perspectives on AAI participation for children with advanced cancer. Objective: To explore perspectives of children with advanced cancer and their caregivers on experiences with AAIs. Design: Cross-sectional qualitative design. Setting/Subjects: Participants were children ( n  = 9) aged 5 to 17 years with relapsed or refractory cancer and their parents ( n  = 12) from one academic children's hospital in the southeastern United States. Participants completed approximately weekly 15-minute AAI sessions with a trained dog and handler during oncology clinic visits or hospitalizations for up to 12 weeks. Measures: Semistructured interviews were carried out after completion of each family's final AAI session to assess child and parent perceptions of AAIs. Qualitative content analysis identified themes. Results: Five themes emerged: (1) positive aspects, (2) negative aspects, (3) preferred changes, (4) pet ownership, and (5) value of the study. Twenty (95%) participants shared positive aspects of AAIs. The only negative aspect reported was too little time with the dog. Conclusion: Children with advanced cancer and their parents perceive AAIs as desirable with few requested changes. Further studies are needed to fully evaluate impact of AAIs. ClinicalTrials.gov Identifier: NCT03765099., Competing Interests: No competing financial interests exist., (© Brittany A. Cowfer et al., 2021; Published by Mary Ann Liebert, Inc.)

Background: A diagnosis of childhood cancer results in new parent-child communication challenges. Little is known about how communication changes over time after diagnosis or relapse. The objective of this study was to determine the effect of time since diagnosis and relapse on quality of parent-child communication. We hypothesized that there would be a positive correlation between time and quality of parent-child communication., Methods: Cross-sectional study in children (7-17 years) with relapsed/refractory cancer and their caregivers, who spoke English, were not cognitively impaired, and had internet access. Parents were recruited through Facebook ads. Parents and children completed the Parent-Adolescent Communication Scale (PACS), a 20-item measure of communication quality, with openness and problem subscales. Spearman's rho (r s ) coefficients assessed correlations between PACS scores and time since diagnosis/relapse., Results: There was a statistically significant negative correlation between parent PACS scores and time since child's cancer diagnosis (r s  = -0.21, p = .02), indicating a tendency for overall worsening communication as time since diagnosis increased. There was a positive correlation between the parent PACS problem scores and time since diagnosis (r s  = +0.22, p = .01), indicating more problematic communication as time since diagnosis increased. Correlations of time since relapse and PACS scores were small and not statistically significant., Conclusion: Parent-child communication worsens over time following a child's cancer diagnosis with more communication problems, contrary to our hypothesis. Future studies are needed to evaluate intervention timing to best support parent-child communication beyond the new-diagnosis period., (© 2021 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Background: A percutaneous transthoracic needle biopsy (PTNB) is performed to obtain tissue for a pathologic diagnosis. A PTNB is necessary prior to the initiation of many cancer treatments. There is a risk of hemoptysis, the expectoration of blood, with the possibility for adverse, life-threatening outcomes. A critical event checklist is a cognitive aid used in an emergency to ensure critical steps are followed. To date, there are no known checklists published for management of PTNB-related, life-threatening hemoptysis. The purpose of this report is to describe the development and implementation of a critical event checklist and the adoption of the checklist into hemoptysis management., Methods: In March 2017, a process improvement team convened to evaluate the hemoptysis response using the Plan-Do-Study-Act (PDSA) methodology. The checklist was evaluated and updated through September 2019. The team educated Interventional Radiology (IR) clinicians on the new checklist and conducted simulations on its use. A retrospective chart review was performed on hemoptysis events between the ten-year period of October 1, 2008 and September 30, 2018 to evaluate the adoption of the checklist into practice., Results: There were 231 hemoptysis events occurring in 229 patients (2 with repeat biopsies). Prior to implementing the protocol and checklist, there were 166 (71.9%) hemoptysis events. After implementation there were 65 (28.1%) events. The median amount of documented blood expectorated with hemoptysis was 100 mL (IQR 20.0-300.0). Twenty-six patients were admitted after PTNB for reasons related to the hemoptysis event (11.3%). During the procedure, four (1.7%) patients with hemoptysis suffered a cardiac arrest. Prior to implementation of the protocol and critical events checklist, nurses positioned patients in the lateral decubitus (LD) position in 40 out of 162 (24.7%) cases. After implementation of the critical events checklist, nurses positioned patients in the LD position 42 out of 65 cases (64.6%) (OR=5.57(95% CI 2.99-10.367), p<0.001)., Discussion: Interventional Radiology nurses successfully adopted the checklist into management of hemoptysis events. The reported incidence of hemoptysis suggests a need for IR teams to prepare for and simulate hemoptysis events. Future research is needed to evaluate the change in patient outcomes before and after critical events checklist implementation.

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers ( N  = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts., Competing Interests: No competing financial interests exist., (© Terrah Foster Akard et al., 2021; Published by Mary Ann Liebert, Inc.)

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-sectional, descriptive study of 24 parents, approximately 100 days after their children received stem cell transplant. Participants reported environmental, personal, and disease characteristics and completed measures of distress, coping, rumination, and posttraumatic growth. Evidence of parental posttraumatic growth was described in each of 5 dimensions (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life). Posttraumatic growth was positively associated with parental distress, disengagement coping, and rumination measures (r = 0.44-0.47, P < .05). Appreciation of life demonstrated the strongest associations with distress and rumination (r = 0.53-0.61, P < .01). Curvilinear relationships were observed for the association of distress, disengagement coping, and involuntary engagement with posttraumatic growth (P < .05). Study results highlight opportunities for palliative care nurses and clinicians to facilitate opportunities to support parent posttraumatic growth during treatment for children's advanced disease., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Parents of children recovering from hematopoietic stem cell transplant (HSCT) experience significant distress due to unpredictable and potentially life-threatening complications. Distress is heightened by intensive caregiving parents provide the child during the first 100 days after HSCT. Management of distress and adaptation to caregiving responsibilities may be enhanced if parents find benefit in their experiences through posttraumatic growth (PTG), yet little is known about how parents' experiences after HSCT foster PTG. This study aimed to explore how parents experience caregiving and PTG 100 days after children's HSCT. Methods: Thirty-one parents completed semi-structured interviews ∼100 days after children received HSCT. Results: Four major themes emerged from the data to describe parent experiences after HSCT: (1) psychosocial and healthcare contextual factors; (2) cognitive, affective, and social support reactions to HSCT; (3) problem-based, emotion-based, and cognitive coping strategies; and (4) PTG. Discussion: Results increase the understanding of how parents' experiences and caregiving responsibilities contribute to PTG. These findings may guide future research to understand how these experiences influence PTG. Nurses are integral to the parents' experiences. Future work should focus on nursing interventions that enhance positive reinterpretation of parents' experiences after their children's HSCT.

Background : Children with cancer often experience decreased quality of life (QOL) throughout the illness trajectory. The purpose of this study was to explore the associations of demographic characteristics with QOL in children with advanced cancer. Methods: This secondary analysis was part of a larger randomized clinical trial that evaluated the efficacy of a legacy intervention for children (7-17 years) with relapsed/refractory cancer and their primary parent caregivers. Assessments included child self-reports on the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Researchers used descriptive and linear regression statistical methods. Results: Children ( n  = 128) averaged 10.9 years (SD = 3.0). The majority were female ( n  = 68, 53%), white ( n  = 107, 84%), had a hematologic malignancy ( n  = 67, 52%), with family incomes of $50,000 or less ( n  = 81, 63.3%). Statistically significant positive associations of both age and income level with PedsQL scores were observed ( p  < .05) but not gender ( p  > .05). The strongest correlations for age were with the procedural anxiety ( beta  = 0.42), treatment anxiety ( beta  = 0.26), and total ( beta  = 0.28) scores (all p  < .01). In general, there was a positive correlation between family income levels and PedsQL scores ( p  < .05). The strongest correlations for income were with nausea ( R  = 0.49), appearance ( R  = 0.44), pain, and treatment anxiety (both R  = 0.42) (all p  < .01). Associations adjusted for age remained essentially the same (all p  < .01). Discussion: Children with advanced cancer with lower family income and younger age are at high risk for poorer QOL. Oncology nurses should seek to identify families who may benefit from additional resources to promote QOL.

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads ( N  = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.

Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize the physical and psychological burdens on individuals and their caregivers. Songwriting is one music-based strategy for a remote family-centered complementary approach to improve outcomes for cognitively-impaired children with life-limiting conditions, their parents, and families. The overall purpose of this study is to test the feasibility and preliminary efficacy of a songwriting intervention for cognitively-impaired children (ages 5-17 years) who are receiving palliative or complex care and their parents. Specific aims are to: (1) determine the feasibility of songwriting for cognitively-impaired children with life-limiting conditions and their parents, and (2) examine preliminary efficacy of songwriting for child psychological distress and physical symptoms, parent psychological distress, and family environment. The protocol for this 1-group pre-and post-intervention clinical trial ( N = 25) is described., Competing Interests: We have no conflicts of interest to disclose., (© 2021 Published by Elsevier Inc.)

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d . Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently., Competing Interests: Disclosure Statement: The authors declare that there is no conflict of interest.

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads ( N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric palliative care research programs and (2) provide an example of how one cooperative group is implementing these innovative efforts to partner with programs to integrate pediatrics on an expanding scale. Details are described for how pediatric studies can benefit from cooperative group infrastructure and expertise. In turn, we describe how cooperative groups can benefit from collaborating on pediatric studies through broadening of data dictionaries, data repositories, and reach in palliative care research communities., Competing Interests: No competing financial interests exist., (© Terrah Foster Akard and Mary Jo Gilmer 2020; Published by Mary Ann Liebert, Inc.)

Pediatric HSCT patients endure complicated treatment regimens, lifestyle modifications, and a lifetime of long-term follow-up. Treatment adherence in this population is understudied and prevalence unknown. Providers (physicians and advanced practice nurses) in this study completed an online-structured questionnaire about definition, assessment, and perceived rates of adherence. Researchers' extracted 187 statements from participants' responses. The majority (n = 12, 71%) of providers reported adherence as a primary concern in outpatient HSCT. The major concern for providers was the potential of non-adherence to negatively affect outcomes. Providers also shared clinical examples of non-adherence. This study contributes to a better understanding of providers' perceptions of adherence within pediatric HSCT. Additional research is needed to describe, define, and improve adherence in pediatric HSCT to ultimately improve outcomes and quality of life for this vulnerable population., (© 2020 Wiley Periodicals LLC.)

Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient-clinician communication. Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders-the patient and acute care bedside nurse. Design: We used an implementation design using mixed methods. Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital. Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception-EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR. Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings. Trial Registration: ClinicalTrials.gov NCT03391115.

Objectives: Bereaved siblings experience more externalizing problems compared to non-bereaved peers and norms; however, the mechanisms explaining this phenomenon have not been empirically examined. This study tested the serial indirect effects of sibling bereavement on adolescents' externalizing problems through parent distress (i.e., internalizing symptoms) and parenting (i.e., parenting behaviors, parent-adolescent communication)., Methods: During home visits, 72 bereaved adolescents (ages 10-18) whose brother/sister died from cancer and 60 comparison peers reported about their externalizing problems and their mothers' and fathers' parenting behaviors (warmth, behavioral control, psychological control) and parent-adolescent communication (open communication, problematic communication). Mothers and fathers reported their own internalizing symptoms., Results: Bereaved siblings reported more externalizing problems ( p =.048) and bereaved mothers reported more internalizing symptoms relative to the comparison group ( p =.015). Serial multiple mediation models indicated that elevated externalizing problems were partially explained by both bereaved mothers' internalizing symptoms and parenting and communication (less warmth [CI: 0.04, 0.86], more psychological control [CI: 0.03, 0.66], and more problematic mother-adolescent communication [CI: 0.03, 0.79]), with a significant indirect effect also emerging for open mother-adolescent communication [CI: 0.05, 1.59]. Bereaved fathers did not significantly differ in internalizing symptoms from comparison fathers ( p =.453), and no significant indirect effects emerged for fathers., Conclusions: Elevated externalizing problems in bereaved siblings may result from mothers' distress and the impact on their parenting and communication. Targeting adjustment and parenting in bereaved mothers following a child's death may reduce externalizing problems in bereaved siblings. Research to evaluate family-centered interventions is needed., Competing Interests: Conflict of Interest All authors declare no conflict of interest.

Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.

Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children's diagnoses and treatment, the family's quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children's feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child's disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.

The purpose of this study was to examine the potential predictive value of the Medication Level Variability Index (MLVI) biomarker with graft-versus-host disease (GVHD) in the pediatric hematopoietic stem cell transplant (HSCT) patient during the acute phase post-transplant. This retrospective descriptive study evaluated a total of 406 tacrolimus levels in 64 patients over a varying number of weeks per participant (median = 8, min = 3, max = 11). Patients were followed until Day 100 post-transplant or tacrolimus taper began. A total of 72 episodes of non-therapeutic levels occurred during the acute phase. Of those, 40 (56%) were <5, while 32 (44%) were >15. Approximately 39% (n = 25 of 64) of the participants in the study developed GVHD post-discharge. Those with GVHD had a statistically significantly higher MLVI than those that did not (median = 3.1, IQR = 2.5-4.7 vs 2.3, IQR = 1.6-3.4, respectively, P = 0.024). Using a criterion of MLVI > 3, there was a statistically significant increased likelihood of GVHD (OR = 3.82, 95% CI=1.32 = 11.04, P = 0.013). Area under the curve (AUC) calculation for the sensitivity and specificity of using the MLVI for GVHD was also conducted. The AUC of 0.67 was statistically significant (95% CI 0.53-0.81, P = 0.024). This is the first-known study to report the use of the MLVI in HSCT patients. The MLVI is associated with a main adverse outcome related to HSCT, GVHD. These results are encouraging of a new potential biomarker to evaluate tacrolimus serum assay levels and identify patients at risk for developing GVHD., (© 2019 Wiley Periodicals, Inc.)

Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.

Background: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time., Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a brother or sister from cancer based on bereaved parent and sibling interviews., Methods: Participants across 3 institutions represented 27 families and included bereaved mothers (n = 21), fathers (n = 15), and siblings (n = 26) ranging from 8 to 17 years old. Participants completed semistructured interviews. Content analysis identified emerging themes and included frequency counts of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data., Results: Participants reported similar types of changes in bereaved siblings at both time points, including changes in sibling relationships, life perspectives, their personal lives, and school performance. A new theme of "openness" emerged at T2. Frequencies of responses differed according to mother, father, or sibling informant. Overall, participants less frequently reported changes at T2 versus T1. Compared with findings in the first year, participants reported greater sibling maturity at follow-up., Conclusion: Overall changes in bereaved siblings continued over 2 years with less frequency over time, with the exception of increases in maturity and openness., Implications for Practice: Providers can educate parents regarding the impact of death of a brother or sister over time. Nurses can foster open communication in surviving grieving siblings and parents as potential protective factors in families going through their grief.

Background: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult populations, legacy activities specific to bereaved parents in the neonatal intensive care unit remain unexplored. This study explored bereaved parents' perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant., Methods: Six bereaved mothers and fathers participated in a focus group interview three to 12 months after the death of an infant in the NICU. A semi-structured interview guide with open-ended questions was used to obtain parent self-reports. Qualitative content analysis identified emerging themes., Results: Four major themes emerged regarding participants' perceptions of a legacy intervention: (a) parents' willingness to participate in a legacy intervention, (b) parents' suggestions for a feasible intervention, (c) parents' suggestions for an acceptable intervention, and (d) parents' perceived benefits of legacy-making., Conclusions: Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.

Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Purpose: This qualitative study examined how bereaved individuals from Honduras responded to deaths of loved ones, particularly through exploring circumstances surrounding deaths and various coping strategies., Methods: With the help of a translator, bereaved family members in Honduras were interviewed using a semi-structured format. The interactions were audio-recorded and later translated and transcribed., Results: Some 60% of individuals spent time with other family members during their loved one's end of life and 22.5% of grieving individuals took solace in spirituality or religious practices and connecting with God. Some 40% wanted to speak with others through support groups. When individuals spoke about remembering the deceased, both comforting and discomforting effects were expressed., Conclusions: Further research is needed to learn more about coping strategies in various cultures and support mechanisms that health professionals can use or suggest when working with bereaved individuals.

Background: This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life., Procedure: Children (N = 28) ages 7-17 years completed a baseline QOL questionnaire (PedsQL) at T1. After baseline, the intervention group (n = 15) completed a randomized intervention that guided children to answer questions about legacy-making and create a digital story about themselves. A final copy of the digital story was provided to the families. A control group (n = 13) received customary care. Children repeated the questionnaire at T2. Parents (N = 22) of children who completed the intervention completed follow-up survey questions regarding intervention effects., Results: Feasibility was strong (78% participation; 1 attrition). While differences between the groups in physical, emotional, social, or school functioning change was not statistically significant, the intervention group showed slightly better emotional and school functioning compared to controls. Parents reported that their child's digital story provided emotional comfort to them (n = 11, 46%), facilitated communication between parents and children (n = 9, 38%), and was a coping strategy for them (n = 4, 17%). Parents reported that the intervention helped children express their feelings (n = 19, 79%), cope (n = 6, 27%), and feel better emotionally (n = 5, 23%)., Conclusions: Our intervention is feasible for children with cancer, is developmentally appropriate for children 7-17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents., (© 2015 Wiley Periodicals, Inc.)

Background: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations., Objective: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones., Methods: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities., Results: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported., Conclusion: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families., Implications for Practice: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.

The doctorate in nursing practice (DNP) degree is recommended as the terminal degree for advanced practice nurses by 2015. Improvement in the quality of palliative and end-of-life care for children with cancer is recognized as a health care priority. The purpose of this article is to describe: (a) how the American Association of Colleges of Nursing's 8 core elements and competencies can be used by DNP-advanced practice nurses in pediatric oncology settings and (b) the DNP-advanced practice nurses' leadership role to advocate translation of evidence in the care of pediatric oncology patients and to promote interdisciplinary collaboration to improve health care outcomes for pediatric oncology patients., (© 2014 by Association of Pediatric Hematology/Oncology Nurses.)