{"title":"Cutaneous Manifestations in an Infant With Hemophagocytic Lymphohistiocytosis: Case Report.","authors":"Nancy Kuntz, Lesa J Grovas, Regina Tang, Yostina Armanyous, Clay Hoerig, Lilibeth Torno, Rishi Chavan","doi":"10.1177/27527530251356970","DOIUrl":"10.1177/27527530251356970","url":null,"abstract":"<p><p><b>Background:</b> Hemophagocytic lymphohistiocytosis (HLH) is a rare, life-threatening disorder characterized by overactivation of the immune system leading to disordered multiorgan inflammation. Allogeneic stem cell transplantation is the required curative treatment of primary HLH. <b>Method:</b> An infant prenatally diagnosed with HLH mutation presented with necrotic cellulitis. Our interdisciplinary team of specialists collaborated to implement early and aggressive supportive wound care strategies, including skin care for high-risk stem cell transplant patients. <b>Results:</b> The patient subsequently underwent allogeneic stem cell transplant with minimal complications and positive outcomes, despite entering the transplant with open skin lesions. <b>Discussion:</b> This complex case highlights the efforts of a multidisciplinary team to partner with the family to provide supportive care to optimize wound healing and improve outcomes.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"202-209"},"PeriodicalIF":1.5,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144883898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jennifer Olson, Leanne Adamson, Cassie Lang, Kelly Miller, Elizabeth Phillips, Flori Legette, Figaro L Loresto
{"title":"Effects of Weighted Blankets on Anxiety for Pediatric Oncology Patients During Outpatient Chemotherapy Infusions.","authors":"Jennifer Olson, Leanne Adamson, Cassie Lang, Kelly Miller, Elizabeth Phillips, Flori Legette, Figaro L Loresto","doi":"10.1177/27527530251342163","DOIUrl":"10.1177/27527530251342163","url":null,"abstract":"<p><p>BackgroundAnxiety is highly prevalent among pediatric oncology patients. Weighted blankets are a potential intervention to address anxiety for pediatric oncology patients. The goal of this work is to assess the effectiveness of weighted blankets in reducing anxiety for pediatric oncology patients.MethodA randomized 2 × 2 cross-over design was utilized. Newly diagnosed pediatric oncology patients between the age of 4 and 17 were included. All participants also needed to pass seriation screening to be able to eligible for the study. Participants were randomized to one of two arms: weighted blanket on first infusion visit after enrollment then usual care on second visit (WB:UC) or usual care on first infusion visit after enrollment then weighted blanket (UC:WB) on second visit. Anxiety via Children's Anxiety Meter-State (CAM-S) was collected pre- and postinfusion visit. Descriptive statistics were conducted to describe the data. A linear mixed model with interaction effects was conducted to assess the treatment effect of the weighted blanket.ResultsThere were 26 participants who were enrolled in the study. Twenty-four with complete information were included in the analysis. Regression models revealed that CAM-S measure reduced by -0.71 (95% CI: [-1.25 to -0.19], <i>p</i> = .02). WB had more impact on the second visit (<math><mi>β</mi></math> = -0.51, -1.92 to 0.88, 0.97).DiscussionThere was significant reduction in anxiety postinfusion. While further research is needed, this study highlights not only the impact of weighted blankets, but of nursing care on anxiety for pediatric oncology patients.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"129-137"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144638292","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding Parental Resilience in the Context of Childhood Leukemia: A Comparative Examination of Mothers and Fathers.","authors":"Gözde Önal, Meral Huri","doi":"10.1177/27527530251337031","DOIUrl":"10.1177/27527530251337031","url":null,"abstract":"<p><p><b>Background:</b> Acute lymphoblastic leukemia (ALL) is the most common childhood cancer, causing significant emotional, physical, and mental strain on families. This strain can affect parental resilience, which is crucial in maintaining family functioning and supporting the child's needs during diagnosis and treatment. This study aimed to examine resilience levels in parents of children with ALL, focusing on differences between mothers and fathers and exploring sociodemographic factors influencing these levels. While specific ALL subtypes were not considered, different risk levels within ALL can affect coping and resilience differently. <b>Method:</b> Parent resilience was assessed using the Resilience Scale for Parents of Children with Cancer. Multiple linear regression was used to analyze how factors such as parents' age, child's age, time since diagnosis, employment status, family size, education level, and income level predict parental resilience. <b>Results:</b> A total of 48 parents participated. Resilience was significantly lower in mothers compared to fathers (<i>p</i> < .01). Sociodemographic factors influencing resilience included the mother's age, number of children, education, and income, <i>F</i>(9, 38) = 66.852, <i>p</i> < .001, and the father's age, child's age, time since diagnosis, number of children, education, and income, <i>F</i>(7, 40) = 245.567, <i>p</i> < .001. <b>Discussion:</b> This study provides insight into the resilience levels of parents of children with ALL. Exploring the differences between mothers and fathers and the influencing factors can improve healthcare services and support programs. Tailored interventions, such as psychosocial support targeting lower income or lower education families, could address parental stress and improve treatment adherence for children with ALL.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"109-119"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Development of a Program to Optimize the Experience and the Use of At-Home Oral Chemotherapies in Pediatric Acute Lymphoblastic Leukemia: A Participatory Approach Using the Behavior Change Wheel.","authors":"Angéline Labbé, Laurence Guillaumie, Marianne Olivier D'Avignon, Pierre-Marie David, Sophie Lauzier, Isabelle Laverdière","doi":"10.1177/27527530251337037","DOIUrl":"10.1177/27527530251337037","url":null,"abstract":"<p><p>BackgroundChildren diagnosed with acute lymphoblastic leukemia (ALL) receive oral chemotherapies (OCs) for 2 years. The at-home self-management of OCs and their consequences on the child lead to multifaceted difficulties that can impact their optimal use and the family's well-being. We report the development process and the detailed plan of a program to support families throughout the treatment.MethodThe development combined a participatory approach with the three stages of Behavior Change Wheel (BCW) framework, namely understanding the behavior to change, identifying intervention options, and identifying content and implementation options. A working group (i.e., researchers, parents, and professionals involved in the care of children with ALL) participated at all development stages through online meetings and co-construction activities.ResultsThe core objective targeted by the program was defined as: <i>to enable families to face the difficulties met with OC by mobilizing tools and resources in collaboration with the healthcare team to support the proper use of OC and the family well-being</i>. The program plan comprises three components with various interventions dispensed at key times during treatment: education and training for OC management and safe use, evaluation and counseling about OC side effects, and empowerment of families and normalization of their experience with OC.DiscussionThe combination of a participatory approach and a structured framework for the program development is likely to increase its relevance, acceptability, and efficacy. This program has the potential to support more effective and safe use of OC, as well as the well-being of the child and their family.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"85-99"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144650745","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Beth Savage, Peijia Zha, Lisa E Paddock, Linda Fischer
{"title":"The Role of Childhood Opportunity in Acute Lymphoblastic Leukemia Survival in New Jersey: 2004-2020.","authors":"Beth Savage, Peijia Zha, Lisa E Paddock, Linda Fischer","doi":"10.1177/27527530251342158","DOIUrl":"10.1177/27527530251342158","url":null,"abstract":"<p><p><b>Background:</b> In the United States, past and present policies have created imbalances in neighborhood resources available to children perpetuating health inequities. The purpose of this study was to determine if neighborhood resources, operationalized using the Child Opportunity Index, are associated with overall survival for 1,343 children and adolescents diagnosed with acute lymphoblastic leukemia in New Jersey (NJ) between 2004 and 2020. <b>Method:</b> The NJ State Cancer Registry was used to create the study cohort. Kaplan-Meier survival curves were estimated for the five categories of the composite Child Opportunity Index and compared statistically by the log-rank test. Unadjusted Cox proportional hazards regression models were constructed to estimate the hazard of death with inclusion in a final adjusted model set at <i>p</i> ≤ .10. This analytic plan was repeated for each of the three subdomains of the Child Opportunity Index to pinpoint potential areas for intervention. <b>Findings:</b> Five-year overall survival was 90%. However, census tracts with very low opportunity had 87% survival and very high had 96%. Living in a very low opportunity census tract was associated with a 2.6-fold risk of death compared to a very high opportunity tract. There was no difference in the hazard of death among racial or ethnic groups. Analyses of the subdomains of the Child Opportunity Index indicate these disparities are driven by socioeconomic factors. <b>Discussion:</b> In NJ childhood acute lymphoblastic leukemia survival is attributable, in part, to the inequitable allocation of opportunity among census tracts leaving children in the state's most poorly resourced areas at greatest risk.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"65-75"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660451","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Päivi Ventovaara, Margareta Af Sandeberg, Klas Blomgren, Pernilla Pergert
{"title":"Juggling Compassion and Competing Demands: A Grounded Theory Study of Pediatric Nurses' Experiences.","authors":"Päivi Ventovaara, Margareta Af Sandeberg, Klas Blomgren, Pernilla Pergert","doi":"10.1177/27527530251342164","DOIUrl":"10.1177/27527530251342164","url":null,"abstract":"<p><p><b>Background:</b> Not being able to provide high-quality care has been recognized as one of the major occupational stressors among nurses. Compromised care quality can prolong hospital stays, risk patient safety, and increase the suffering of children with cancer who often have comprehensive care needs. The purpose of this study was to explore pediatric oncology nurses' experiences of situations when they have not been able to provide the best care to children with cancer. <b>Method:</b> A qualitative study was conducted with a classic grounded theory approach. After purposive sampling followed by theoretical sampling, individual and focus group interviews were performed. Simultaneously with data collection, analysis was carried out in accordance with classic grounded theory. <b>Results:</b> Twenty-five nurses from three different pediatric units were interviewed between September 2021 and May 2023. Nurses' main concern was to uphold children's best interests. Lack of time was one of the major barriers to the best possible care, but even different views on children's best interests hindered nurses from practicing care as they wished. Nurses handled challenging situations by juggling compassion and competing responsibilities, which included prioritizing, shifting up a gear, settling for good enough, acquiescing, and pulling together. <b>Discussion:</b> This study suggests ensuring practical support during busy work shifts and creating opportunities for interdisciplinary discussions on care issues and on children's best interests.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"76-84"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144576448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Seray Afacan Güler, Neslihan Partlak Günüşen, Özgü Serçe Yüksel, Deniz Kizmazoğlu
{"title":"Experiences and Needs of Turkish Fathers of Children With Cancer: A Descriptive Qualitative Study.","authors":"Seray Afacan Güler, Neslihan Partlak Günüşen, Özgü Serçe Yüksel, Deniz Kizmazoğlu","doi":"10.1177/27527530251336209","DOIUrl":"10.1177/27527530251336209","url":null,"abstract":"<p><p>BackgroundThe purpose of this study was to investigate the experiences and needs of Turkish fathers with children undergoing cancer treatment.MethodThis descriptive qualitative study was conducted in a university hospital in Türkiye. The sample of the study consisted of 23 fathers of children with cancer selected with purposive sampling. Semistructured interviews were analyzed by using the thematic analysis method.ResultsFour themes emerged from these data. These themes were emotional experiences, changes, role of social support in coping, and support needs. Fathers experienced fear of death, helplessness, uncertainty, loneliness, and hope. They assumed the role of caregiver in addition to the role of father, spouse, and employee. Their family relationships improved for the sick child and spouse but did not for siblings. It was found that fathers hid their feelings from their families to look strong. Moreover, they had information needs at the beginning and ongoing housing and financial needs. Fathers needed psychological support, and they did not know how to access psychological support services.DiscussionFathers whose children have cancer experience many emotional difficulties and changes. They have difficulty in expressing their feelings and getting help. Nurses may encourage fathers to express their feelings, recognize their changing roles, relationships, and needs, and provide psychosocial support based on holistic care to help them cope with emotional burdens.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"100-108"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144529954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kerstin Ivéus, Maja Holm, Ulrika Kreicbergs, Camilla Udo, Malin Lövgren
{"title":"Parents' Long-Term Retention of the Family Talk Intervention in Pediatric Oncology.","authors":"Kerstin Ivéus, Maja Holm, Ulrika Kreicbergs, Camilla Udo, Malin Lövgren","doi":"10.1177/27527530251342151","DOIUrl":"10.1177/27527530251342151","url":null,"abstract":"<p><p><b>Background:</b> Despite the significant psychosocial challenges faced by families in pediatric oncology, there is a notable lack of long-term scientific evaluations of family-based psychosocial interventions that address the needs of the entire family. This study examines parental retention 4-5 years after participating in a psychosocial family-based intervention family talk intervention (FTI). FTI consists of 6-11 manual-based meetings. The main goals of FTI are to facilitate family communication about illness-related topics, support parenting, and make the children's needs visible. <b>Method:</b> This qualitative study included interviews from 30 parents from 18 families who had participated in FTI 4-5 years earlier. Data were analyzed using content analysis. <b>Results:</b> Parents reported that they still used several of the strategies they had learned during FTI that helped them to continue to share their thoughts and emotions and maintain an open communication within the family, which reduced the family's stress. Parents also used strategies that helped them to put the spotlight on the children and to increase the democracy in the family. Their participation provided a springboard to participate in new contexts outside the hospital where they share their difficulties with other parents. <b>Discussion:</b> Long-term evaluation is crucial for understanding an intervention's sustainability over time. The psychosocial intervention, FTI, remained beneficial for families even 4-5 years after their participation, with the strategies learned during FTI demonstrating long-term persistence and enhancing parents' resilience in coping with adverse life events.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"120-128"},"PeriodicalIF":1.5,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144660450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alyssa M Schlenz, Shannon M Phillips, Jeanine Dumas, Julie Kanter
{"title":"Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia.","authors":"Alyssa M Schlenz, Shannon M Phillips, Jeanine Dumas, Julie Kanter","doi":"10.1177/27527530251319294","DOIUrl":"10.1177/27527530251319294","url":null,"abstract":"<p><p><b>Background:</b> Effective education is an important component of optimal care for sickle cell anemia. The purpose of this article is to describe the development and process evaluation of an educational initiative for stroke risk screening, including perspectives from providers, coordinators, and caregivers as well as lessons learned for future initiatives. <b>Method:</b> A new term, \"Sickle Stroke Screen,\" and an infographic for stroke risk screening were developed using patient/family input and branding expertise. A pamphlet and poster were developed via iterative feedback with hematological providers. Thirteen sites implemented the educational initiative as part of a multicomponent intervention study over 2 years. Evaluation included surveys and interviews with 13 site providers and six coordinators and surveys with 80 caregivers. Descriptive statistics were used for survey results, and content analysis was used for interviews. <b>Results:</b> Providers and coordinators commented on processes, successes, and barriers to the intervention. Key process themes included <i>methods of delivering information</i> and <i>refining processes</i>. Key successes included intervention <i>impact</i>, <i>helpfulness</i>, and <i>ease of use</i>. <i>Inconsistency</i> was a core barrier reported across the study with some improved success over time. Caregivers felt positively about the educational materials, including liking, understanding, and feeling motivated to act based on the new education. <b>Discussion:</b> Patient/family feedback and branding expertise were critical to developing an educational initiative that was well received by providers, coordinators, and other families. Inconsistency was a barrier worsened by healthcare complexity and the pandemic, though flexible delivery methods and commitment to education helped sites to be successful over time.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"5-18"},"PeriodicalIF":1.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144041692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Pediatric Patient Experiences Using Medical Cannabis in Cancer Symptom Management as Reported by Parents of Children and Adolescents and by Young Adults.","authors":"Mary Langevin, Teresa Herriage, Mary C Hooke","doi":"10.1177/27527530251318606","DOIUrl":"10.1177/27527530251318606","url":null,"abstract":"<p><p><b>Background:</b> Children, adolescents, and young adults (YAs) with cancer are using cannabis for therapeutic effects. A systematic review of cannabis in pediatric cancer patients found most studies focused on chemotherapy-induced nausea and vomiting with some including general symptom management. The purpose of this study was to explore the experiences of pediatric cancer patients using cannabis obtained from a medical cannabis program to manage cancer-related symptoms. <b>Method:</b> Parents of children and adolescents under age 18, and YAs age 18 and older who were certified for a medical cannabis program were invited to participate. Using a 12-item anonymous survey, participants reported on what symptoms they hoped cannabis would improve, what symptoms were helped, and side effects experienced. <b>Results:</b> Fifteen parents and nine YAs responded. The symptoms participants were seeking help with were: nausea/vomiting, <i>n</i> = 20; appetite, <i>n</i> = 15; pain, <i>n</i> = 13; sadness/anxiety, <i>n</i> = 7; sleep, <i>n</i> = 7; and treat cancer, <i>n</i> = 5. Most (<i>n</i> = 17) reported they thought cannabis helped. The specific symptoms helped were: nausea/vomiting, <i>n</i> = 15; appetite, <i>n</i> = 13; pain, <i>n</i> = 9; sadness/anxiety, <i>n</i> = 10; sleep, <i>n</i> = 9; and treating cancer, <i>n</i> = 3. Five reported side effects of mental changes. <b>Discussion:</b> Results provide insight into experiences of pediatric oncology patients referred to the medical cannabis program. Medical cannabis pharmacies can provide an effective adjuvant intervention for pediatric cancer symptoms. Most reported that medical cannabis helped ease some distressing symptoms with minimal side effects, but not all experienced benefits.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"37-43"},"PeriodicalIF":1.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144175049","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}