Journal of Pediatric Hematology-Oncology Nursing最新文献

{"title":"Gaps in Parental Understanding of Sleep Disturbances During Maintenance Therapy for Pediatric Acute Lymphoblastic Leukemia.","authors":"Eric S Zhou, Ariana F Valenzuela, Rebecca Robbins, Jessica M Page, Kira Bona","doi":"10.1177/27527530231168587","DOIUrl":"10.1177/27527530231168587","url":null,"abstract":"<p><p><b>Background:</b> Acute lymphoblastic leukemia (ALL) is the most common cancer in childhood, with survival rates approaching 90%. Sleep disturbance is common among ALL patients, often developing during the initial stages of chemotherapy treatment. While there have been significant efforts to understand and intervene in this issue during survivorship, there is far less research on children who are actively receiving treatment. In the current study, we sought to better understand the parent's experience in the sleep domain during maintenance therapy, including their perceptions of how their child's medical team had managed sleep disturbances, and recommendations for how to improve sleep management. <b>Method:</b> Fifteen parents of pediatric ALL patients (aged 4-12 years) completed semistructured interviews. Interview content was analyzed using a multistage thematic analysis. <b>Results:</b> Parents consistently expressed feeling unprepared to manage the sleep disruptions that arose during treatment, often reporting that they did not recall being told this would be a side effect. They were enthusiastic about learning how to improve their child's sleep, though they did not want pharmacotherapeutic interventions or additional medical/psychosocial appointments to address this. <b>Conclusion:</b> Despite consistent provider communication on sleep, parents report limited knowledge of the issue. This provides an obvious intervention target to improve treatment-related sleep disturbances. Clear messaging may help direct parents' attention and expectations regarding their child's treatment and potential for disturbed sleep, possibly in the form of a behavioral intervention that empowers parents with information about how to support their child's sleep health while they are undergoing treatment for ALL.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11318374/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10157049","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of Person-Centered Information for Parents of Children With Cancer (the PIFBO Study): A Randomized Controlled Trial.","authors":"Anders Ringnér, Maria Björk, Cecilia Olsson","doi":"10.1177/27527530221115860","DOIUrl":"10.1177/27527530221115860","url":null,"abstract":"<p><p><b>Background:</b> Conveying information to parents is a core part of pediatric oncology nursing; however, most published interventions do not tailor information to individual parental needs. <b>Objective:</b> To evaluate the effect on parental illness-related stress of person-centered information provided to parents of children with cancer. <b>Methods:</b> A multicenter, unblinded randomized controlled trial with two parallel arms recruiting parents of children diagnosed within the past two months from two tertiary children's cancer centers in Sweden. Parents were randomized using sealed envelopes prepared and opened by an independent person. Parents in the intervention arm met four times with experienced nurses trained in the intervention, whereas controls received standard care. The effect of the intervention was measured five times regarding parents' illness-related stress. Secondary outcomes were psychosocial states, experiences with healthcare providers, and received information. Further, we collected process data on the intervention's content and fidelity. <b>Results:</b> Of the 32 parents included and analyzed in the study, 16 were randomized to the intervention, which addressed a broad variety of topics. The intervention increased parents' knowledge about the biophysiological and functional aspects of their child's illness, but it had no measurable effect on their distress. <b>Discussion:</b> Although fidelity to the intervention protocol was sufficient, the study was flawed by recruitment difficulties, primarily due to organizational factors, which may have prevented us from observing any possible effects on psychosocial distress. Having a person-centered perspective could be promising for future studies aimed at parents of children with cancer. (Registered at Clinicaltrials.gov, number NCT02332226.).</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9299669","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":"Spiritual Well-Being and Related Factors in Children With Cancer.","authors":"Erika Juškauskienė, Olga Riklikienė, John Fisher","doi":"10.1177/27527530231168592","DOIUrl":"10.1177/27527530231168592","url":null,"abstract":"<p><p><b>Introduction:</b> There are specific gaps that call for empirical research in the experiences of spiritual well-being among children 12 years old and younger with cancer. Understanding these relationships can help to develop holistic and family centered care in pediatric oncology wards. This study assessed the spiritual well-being of children with cancer in association with their general well-being, happiness, quality of life, pain intensity, and personal characteristics. <b>Method:</b> The data were collected in Lithuania between June 2020 and November 2021. Children with cancer (<i>N</i> = 81) who were hospitalized at pediatric oncology-hematology centers participated in the study. Inclusion criteria were age (from 5 to 12 years old), diagnosis of oncologic disease for the first time, and absence of other chronic diseases. The instruments used were: Feeling Good, Living Life; Oxford Happiness Questionnaire, Short Form; Well-Being Index; PedsQL™3.0 Cancer Module, and a Wong-Baker FACES® Pain Rating Scale. <b>Results:</b> Communal and personal domains of spiritual well-being had the highest scores among pediatric oncology patients while both dimensions of the transcendental domain scored lowest. Age, level of education, and family composition revealed differences in children's spiritual health, happiness, and well-being, and church attendance was significant for overall spiritual well-being and its transcendental domain on lived experience dimension. Happiness had the strongest effect on all four domains of spiritual well-being. <b>Discussion:</b> Children emphasized the importance of spiritual aspects to feel better to a greater extent than they experienced in their lives. Despite their young age, children were familiar with family traditions, that is, religious practice and church attendance, and followed them in a particular sociocultural context.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9617713","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":"Virtual Reality for Pediatric Oncology Port-A-Cath Access: A Pilot Effectiveness Study.","authors":"Louisa Rygh, Sonal Johal, Hana Johnson, Cynthia W Karlson","doi":"10.1177/27527530221147875","DOIUrl":"10.1177/27527530221147875","url":null,"abstract":"<p><p><b>Introduction:</b> Port-a-cath procedures are among the most distressing aspects of pediatric cancer treatment. The current study aimed to examine the usability of virtual reality (VR) interventions for children undergoing chemotherapy port-access procedures. <b>Methods</b>: Families (<i>N</i> = 20) of children with cancer, 4-17 years old (<i>M</i> = 8.70 years, <i>SD</i> = 3.71), were recruited. Patients and parents rated patients' dizziness, nausea, pain, and distress, and participants were shown how to use VR prior to the use of the procedure. After port-a-cath access, patients and parents rated pain and distress during the intervention. Semistructured interviews were conducted to examine the usability of the intervention. <b>Result</b>: A significant difference was identified for change in children's pain score for younger children, <i>F</i>(2, 11) = 4.16, <i>p</i> < .05. A significant decrease in fear scores was observed on child and parent reports. The VR headset was used during the procedure by 87.5% of the participants, while the rest used it before but took it off during the procedure, and 85.7% wished to use it again. No concerns were reported by 84.6% of the nurses and 92.3% reported no interference with their workflow. <b>Discussion</b>: More research is needed to fully understand the benefits of VR interventions during children's chemotherapy port procedures. The findings of this pilot study suggest that the use of commercially available VR intervention may reduce children's fear and pain levels during the port-a-cath procedure, especially for younger children.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9698328","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":"Symptoms, Physical Activity, and Biomarkers in Children at the End of Leukemia Maintenance Therapy.","authors":"Mary C Hooke, Derek L Salisbury, Michelle A Mathiason, Alicia S Kunin-Batson, Audrey Blommer, Jessica Hutter, Pauline Mitby, Ida Moore, Susan Whitman, Olga Taylor, Michael E Scheurer, Marilyn J Hockenberry","doi":"10.1177/27527530221148479","DOIUrl":"10.1177/27527530221148479","url":null,"abstract":"<p><p><b>Background:</b> Symptoms in children with acute lymphocytic leukemia (ALL) change over the trajectory of treatment but little is known about their symptoms as treatment ends. Physical activity may help decrease symptom distress and is vital for ongoing development. The role of biomarkers in symptom science is emerging. The purpose of the study was to explore relationships between self-report of symptoms and physical activity, actigraphy measures, and cerebrospinal fluid (CSF) biomarkers. <b>Methods:</b> Participants were children who were ages 3 to 18 years at the time of ALL diagnosis and were now in the last 12-week cycle of ALL maintenance. Self-reports of fatigue, sleep disturbance, depressive symptoms, and physical activity were completed by participants and parents of younger children. Participants wore a wrist actigraph continuously for the 7 days before other measurements. F2-isoprostanes and interleukin-8 were evaluated in CSF samples. <b>Results:</b> Among the 15 participants, self-report of symptoms and physical activity indicated levels similar to healthy peers. F2-isoprostane had a strong positive correlation with fatigue levels and with depressive symptoms. Fatigue, sleep disturbance, and depressive symptoms positively correlated with each other. Actigraph measures showed children met the CDC guidelines for 60 min of daily moderate to vigorous activity; sleep time was slightly less than healthy norms. <b>Discussion:</b> During maintenance therapy, most children return to healthy norms in symptom burden and physical activity. F2-isoprostane in the CSF is a biomarker for fatigue and depressive symptoms. Children who had persistent symptoms experienced them as a cluster, which confirms previous symptom cluster research.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9686296","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":"An Expert Evaluation of Oncology Website Resources for Use in Pediatric Oncology Clinical Nursing Education in Low-Resource Settings.","authors":"Aprille C Banayat, Julia Challinor, Elizabeth Sniderman","doi":"10.1177/27527530231190370","DOIUrl":"10.1177/27527530231190370","url":null,"abstract":"<p><p><b>Background:</b> Online healthcare information is often used by pediatric oncology nurse educators in low- and middle-income countries (LMICs) for teaching clinical nurses as part of their initial orientation or continuing education. Access to peer-reviewed nursing journals via paid subscriptions or sub-specialty nursing textbooks in these settings is rare. This project identified and evaluated websites appropriate for pediatric oncology nurse educators in LMICs for teaching staff nurses, and for clinical staff nurses engaging in self-directed learning. <b>Method:</b> A strategic Google search for childhood cancer websites and an appropriate scoring tool was conducted. The Currency, Relevance, Authority, Accuracy, and Purpose Test, along with a previously published scoring rubric that was further adapted by the authors for pediatric oncology were used. Pediatric content, language options, and reading levels were appraised. <b>Results:</b> Of 86 identified websites, 51 met the inclusion criteria for evaluation. Websites were classified as highly recommended (<i>n</i> = 36), recommended (<i>n</i> = 12), or not recommended (<i>n</i> = 3) based on scores (range 14-30; maximum possible score = 30). Half offered content in multiple languages. Most websites were 9-10th-grade reading level. <b>Discussion:</b> Childhood cancer information appropriate for clinical nurse orientation and self-directed learning by LMIC nurses is available on free websites. Some information (diagnosis, chemotherapy, psychosocial support) is repeated across websites, while some is lacking (pediatric cancer genetics and health equity disparities). Reading levels are higher than recommended for health literacy. The reviewed websites were rarely peer-reviewed, inconsistently updated, and generally self-regulated. However, 48 websites on childhood cancer were deemed appropriate pediatric oncology clinical nursing education resources.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71486753","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":"Care Needs of Parents of Children With Cancer in a Low-Middle-Income Country.","authors":"Aprille Campos Banayat, Peter James B Abad, Sheila R Bonito, Lydia T Manahan, Arnold B Peralta","doi":"10.1177/27527530231193972","DOIUrl":"10.1177/27527530231193972","url":null,"abstract":"<p><p><b>Background:</b> Mapping out actual supportive care needs assists nurses in providing holistic individualized care. This study aimed to explore the care needs of parents of children with cancer in the Philippines. <b>Method:</b> Guided by the Supportive Care Needs Framework (SCNF), this study used an embedded mixed-method design with the quantitative revised Cancer Patient Needs Questionnaire and qualitative semistructured interviews to describe parents' care needs and priorities. <b>Results:</b> Filipino parents (<i>N</i> = 156) of children with cancer have various care needs which could be classified along the SCNF categories-practical, informational, spiritual, physical, emotional, and physical needs as ranked from highest to lowest. A number of variables were significantly associated with care needs. Solid tumor diagnosis was associated with greater practical, emotional, and psychosocial care needs; having a child who had undergone surgery was associated with more practical and spiritual care needs; and being within one year of the child's diagnosis was associated with practical, psychosocial, and spiritual care needs. Parent priority needs included (a) addressing financial needs; (b) access to temporary housing to minimize treatment-related costs; (c) support groups among parents of children with cancer as a source of information; (d) financial and social support between members of family and partners of parents of children with cancer; and (e) using prayer to facilitate acceptance. <b>Conclusions:</b> Supportive care needs of parents of children with cancer are important components of care that should be given recognition to enhance holistic individualized care throughout the childhood cancer experience.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"54231295","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 and Implementation of Educational Material by Nurses for Parents/Caregivers of Children With Cancer: A Peruvian National Study.","authors":"Rosmery Hilario, Melitta Cosme, Isela Barzola, Giovanna Bejarano, Annaly Benavente, Gina Sabrera, Edinho Celis, Flor Mirabal, María Del Pilar Huerta, Zulma Carpio, Yuly Quispe, Elizabeth Elera, Kathy Ascue, Maritza Jesús, Ivonne Grados, Nora Allauca, Milagros Escobedo, Sara Muñoz, Lourdes Ruda, María Del Carmen Velandres, María Fernanda Olarte-Sierra, Essy Maradiegue, Claudia Pascual, Liliana Vasquez","doi":"10.1177/27527530231198202","DOIUrl":"10.1177/27527530231198202","url":null,"abstract":"<p><p><b>Background:</b> Education for parents and caregivers of children with cancer is one of the fundamental roles of nurses to avoid complications, provide quality care, promote adherence to treatment and maintain basic standards of care. This study aimed to design educational material for parents and caregivers of children with cancer in Peru on general information about childhood cancer and its care. <b>Method:</b> Within the framework of the WHO Global Initiative for Childhood Cancer in Peru, a multicenter working group was convened by the Peruvian Ministry of Health. A comprehensive needs assessment of parents and caregivers of children with cancer was performed through a survey in June and July 2020. The survey was conducted online (via Google Forms) and in person at nine hospitals to examine the preferred method of delivery and content of information. <b>Results:</b> Based on the findings from the parent needs assessment, a national nursing working group developed Spanish-language audiovisual materials (i.e., diagnosis and treatment videos for nurses to educate parents and caregivers). A total of 365 parents and caregivers were included. Most respondents (56.9%) were parents of children receiving treatment. Main topics were childhood cancer overview and side effects (85%), food and nutrition (75%), and palliative care (67%); most (70.9%) preferred information through talks and videos (64.7%). Twenty-three videos were developed with support by the Pan American Health Organization and the Ministry of Health. <b>Discussion:</b> Assessing the educational needs of parents and caregivers of children with cancer provides a starting point in the design of targeted strategies.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71427397","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":"Current Status of Pediatric Oncology Clinics and Nursing Practices in Turkey.","authors":"Nurseven Karaman, Pinar Yilmaz","doi":"10.1177/27527530231197221","DOIUrl":"10.1177/27527530231197221","url":null,"abstract":"<p><p><b>Background:</b> Cancer is a significant health problem in Turkey with pediatric cancer being the fourth leading cause of death among children. Pediatric oncology has been acknowledged as a pediatric subspecialty since 1983, and 3,000 new cases of childhood cancer are expected every year. <b>Method:</b> We describe our country's geography, the number and distribution of pediatric oncology centers, the profile of clinical and academic nurses, and our clinical practice. We present two nurse-led research projects. <b>Results:</b> Although nursing practice differs according to centers, treatment and care are usually evidence-based, especially in university and public hospitals in big cities. Nurses with an undergraduate education work in pediatric oncology units; however, few nurses with graduate degrees work in clinical settings. The Turkish Oncology Nurses Association supports the development and implementation of guidelines for evidence-based nursing care. Nurses' clinical responsibilities include patient admission to the clinic, patient and family education, care coordination, patient care, symptom management, palliative, and intensive care services. Results of two recent nurse-led studies highlight challenges to meet the needs of patients and families from surrounding countries, including refugees, and opportunities for nurses to provide holistic support to parents of hospitalized children. <b>Discussion:</b> Increasing the number of nurses is a priority to improve pediatric oncology nursing care. Actions to advance pediatric oncology nursing include developing advanced clinical roles for nurses with graduate degrees; supporting nurses caring for children and families from outside Turkey, including language support services; and resources to conduct national and international studies related to professional and holistic care delivery.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71427396","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 Oncology Nurse-Led Research and Evidence-Based Practice: Global Exemplars to Reduce Disparity.","authors":"Lauri A Linder, Julia Challinor","doi":"10.1177/27527530231190371","DOIUrl":"10.1177/27527530231190371","url":null,"abstract":"","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136399531","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}