Journal of Pediatric Hematology-Oncology Nursing最新文献

{"title":"Pediatric Chemotherapy Infusions in Outpatient Examination Rooms: A Novel Patient Care Approach.","authors":"Tami K Omdahl,&nbsp;Janelle L Stenzel,&nbsp;Marsha L Pike,&nbsp;Patricia M Conlon,&nbsp;Tracy A Barry,&nbsp;Tanya M Brown,&nbsp;Kari L Cambern,&nbsp;Kadi M Davis,&nbsp;Kelly A Fjerstad,&nbsp;Kevin K Graner,&nbsp;Alexis K Kuhn,&nbsp;Alison P Larson,&nbsp;Amir B Orandi,&nbsp;Emily L Smith,&nbsp;Scott A Soefje,&nbsp;Alan M Janssen","doi":"10.1177/27527530221140067","DOIUrl":"https://doi.org/10.1177/27527530221140067","url":null,"abstract":"<p><p><b>Background:</b> Many health care organizations offer pediatric infusions in outpatient infusion centers or, as in our organization, in a hospital-based outpatient Pediatric Infusion Therapy Center (PITC). When restrictions related to the COVID-19 pandemic decreased our PITC appointment capacity by 40%, other patient and family satisfaction issues were exacerbated. We implemented a new approach to pediatric infusions with the aim of improving patient and family satisfaction and reducing the amount of time in an appointment itinerary without negatively affecting patient safety. <b>Methods:</b> Our team used a phased approach to pilot the administration of short chemotherapy infusions in the same outpatient clinic examination rooms where consultation and routine office visits were conducted. Patients saw their specialist for an examination and, if clinically indicated, their infusion was administered in the same room. Appointment itineraries were then completed. The team tracked efficiency, satisfaction, and safety metrics related to the new process. <b>Results:</b> All efficiency metrics improved. No harm came to the 49 unique patients who received a total of 184 infusions. Patient appointment itineraries were shortened by an average of 1.03 hr. Satisfaction survey responses indicated a clear preference (93%) for the new process. <b>Discussion:</b> The novel approach of offering short infusions in outpatient clinic examination rooms provides an opportunity to ease capacity constraints and further increase patient and family satisfaction. This method may be especially helpful for health care organizations when external influences (e.g., lack of physical space, challenging patient volumes, and pandemics) necessitate a change.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9780607","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":"A Structured Discharge Education Intervention for Parents of Newly Diagnosed Pediatric Oncology Patients.","authors":"Wendy Landier,&nbsp;Jocelyn M York,&nbsp;Aman Wadhwa,&nbsp;Kandice Adams,&nbsp;Harrison M Henneberg,&nbsp;Avi Madan-Swain,&nbsp;Beth Benton,&nbsp;Valencia Slater,&nbsp;Sue Zupanec,&nbsp;Jeneane Miller,&nbsp;Kathryn Tomlinson,&nbsp;Joshua S Richman,&nbsp;Smita Bhatia","doi":"10.1177/27527530221140058","DOIUrl":"https://doi.org/10.1177/27527530221140058","url":null,"abstract":"<p><p><b>Background:</b> Parents of children newly diagnosed with cancer require specialized knowledge and skills in order to safely care for their children at home. The Children's Oncology Group (COG) developed expert consensus recommendations to guide new diagnosis education; however, these recommendations have not been empirically tested. <b>Methods:</b> We used a sequential two-cohort study design to test a nurse-led Structured Discharge Teaching Intervention (SDTI) that operationalizes the COG expert recommendations in the setting of a tertiary children's hospital. Outcomes included parent Readiness for Hospital Discharge Scale (RHDS); Quality of Discharge Teaching Scale (QDTS); Post-Discharge Coping Difficulty (PDCD); Nurse Satisfaction; and post-discharge unplanned healthcare utilization. <b>Results:</b> The process for discharge education changed significantly before and after implementation of the SDTI, with significantly fewer instances of one-day discharge teaching, and higher involvement of staff nurses in teaching. Overall, parental RHDS, QDTS, and PDCD scores were similar in the unintervened and intervened cohorts. Almost 60% of patients had unplanned healthcare encounters during the first 30 days following their initial hospital discharge. Overall nurse satisfaction with the quality and process of discharge education significantly increased post-intervention. <b>Discussion:</b> Although the structure for and process of delivering discharge education changed significantly with implementation of the SDTI, parent RHDS and QDTS scores remained uniformly high and PDCD scores and non-preventable unplanned healthcare utilization remained similar, while nurse satisfaction with the quality and process of discharge education significantly improved, suggesting that further testing of the SDTI across diverse pediatric oncology settings is warranted.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10046397","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":"Nurses' Perceptions of the Impact of a National Educational Program in Pediatric Oncology Nursing: A Cross-Sectional Evaluation.","authors":"Margareta Af Sandeberg,&nbsp;Maria Olsson,&nbsp;Torben Ek,&nbsp;Karin Enskär,&nbsp;Margaretha Stenmarker,&nbsp;Pernilla Pergert","doi":"10.1177/27527530221147879","DOIUrl":"https://doi.org/10.1177/27527530221147879","url":null,"abstract":"<p><p><b>Background:</b> Specific knowledge is required in pediatric oncology, and specialization of nurses has been identified as a priority. In Sweden, a national program in pediatric oncology nursing has been offered since 2003. The aim of this study was to gain knowledge of nurses' perceptions of the impact of this educational program. <b>Methods:</b> Eighty nurses who had completed the educational program in three cohorts (2012-2019) were invited to participate in this cross-sectional survey. An electronic study-specific questionnaire containing multiple-choice questions was used. Data were analyzed using descriptive statistics and correlation tests. <b>Results:</b> Fifty-nine (74%) nurses completed the survey, of whom 98% responded that they would recommend the program to a large/fairly large extent. At the time of the survey, 15 (25%) participants had left pediatric oncology care. Among the remaining 44, 31 (71%) of the nurses were working bedside, and 13 (42%) of these combined this with a special position (e.g., consultant nurse). The education resulted in career advancement, as the number of nurses with special positions increased following completion of the program, from 20% to 59%. The vast majority stated that the knowledge gained from the education contributed to increased confidence in interactions with the children/families. <b>Discussion:</b> Continuing education of nurses in pediatric oncology has an impact on career opportunities in clinical practice and contributes to nurses' confidence and professional work. However, education is not enough to retain competent nurses. Employers need to be aware of the role of the work environment, aspects of work-life balance and career paths.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9690889","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":"Implementation of a Structured Process for Clinically Indicated Testing for <i>Clostridioides difficile</i> Infections in Pediatric Oncology and Stem Cell Transplant.","authors":"Molly Kusma,&nbsp;Jeanne Little,&nbsp;Larry Kociolek","doi":"10.1177/27527530221140063","DOIUrl":"https://doi.org/10.1177/27527530221140063","url":null,"abstract":"<p><p><b>Background:</b> <i>Clostridioides difficile</i> (<i>C. difficile</i>) is the primary cause of healthcare-associated infectious diarrhea. Pediatric patients with oncology and stem cell transplant (SCT) diagnoses are at greater risk of <i>C. difficile</i> infections (CDI) and <i>C. difficile</i> colonization than those without. Misdiagnosis of <i>C. difficile</i> colonization as infection and subsequent unnecessary treatment can lead to antibiotic resistance, increased healthcare costs, and an overestimation of CDI rates. <b>Methods:</b> A best practice advisory (BPA) was built into the electronic medical record to guide decision making regarding clinically indicated <i>C. difficile</i> testing. Tests for CDI were to be sent only if the patient met all the predefined clinical criteria for testing. The number of CDI tests ordered per 1,000 patient days, the number of tests positive per 1,000 patient days, and the proportion of positive tests were compared before and after implementation. <b>Results:</b> The number of tests ordered per 1,000 patient days declined from 8.2 to 5.7 after the intervention. Positive tests per 1,000 patient days increased from 2.2 to 3.5 after the intervention. This demonstrates an increase in the proportion of positive tests from 27% to 61%. <b>Discussion:</b> This intervention led to fewer CDI tests ordered, but CDI incidence and test positivity proportion increased. This is likely reflective of better-targeted testing for CDI and the identification of true-positive cases of infection, but we cannot rule out a coincident increase in CDI activity during the study period. Through education and electronic reminders of the clinical indicators for testing for CDI, the frequency of testing for <i>C. difficile</i> was reduced.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10136010","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":"Effects of a Pretend Play Intervention on Health-Related Quality of Life in Children With Cancer: A Swedish-German Study.","authors":"Stefanie Witt,&nbsp;Julia Quitmann,&nbsp;Anna T Höglund,&nbsp;Sandra Russ,&nbsp;Anne Kaman,&nbsp;Gabriele Escherich,&nbsp;Sara Frygner-Holm","doi":"10.1177/27527530221121726","DOIUrl":"https://doi.org/10.1177/27527530221121726","url":null,"abstract":"<p><p><b>Background:</b> Cancer diagnosis can lead to massive physical, emotional, and social burdens on children and their families. Although children have the right to be informed and participate in their care, research shows that children's views are often not considered in care situations. Thus, it is essential to strengthen children's communication and self-efficacy (SE) to convey desires and needs. The present study explores whether a play intervention is associated with improved health-related quality of life (HrQoL) and SE for communication in care situations. We hypothesize that HrQoL and SE for communication will increase from the beginning to after the pretend play intervention. <b>Methods:</b> Children with cancer from Germany and Sweden were enrolled. The pretend play intervention consisted of six to 10 play sessions. A heterogenic selection of questionnaires was used to measure children's HrQoL and SE before the first pretend play session and after the last play intervention. <b>Results:</b> Nineteen families were included in the presented analyses, including 14 self-reports of children and 19 proxy reports of parents. We found improvements in child-reported communication, and emotional and psychosocial well-being using generic and cancer-specific HrQoL measurements. Further, children's SE in care situations improved during the play intervention. Parents also reported minor improvements in the physical dimensions in both generic and chronic-generic HrQoL, along with improvements in independence. <b>Discussion:</b> Overall, the cancer-specific pretend play intervention offers young children with cancer a secure environment and can contribute to their well-being, and communication skills, during or after cancer treatment.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9689630","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":"Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer.","authors":"Maggie C Root, Jane Koo, Griffin Collins, Neela L Penumarthy, Michelle Hermiston, Jori F Bogetz","doi":"10.1177/27527530221140069","DOIUrl":"10.1177/27527530221140069","url":null,"abstract":"<p><p><b>Background:</b> Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. <b>Methods:</b> Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. <b>Results:</b> Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (<i>n</i> = 31, 55%) and non-pain symptom management (<i>n</i> = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. <b>Discussion:</b> Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10331083/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10127889","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":"Expanding APHON's Pediatric Chemotherapy/Biotherapy Provider and Instructor Program to Spanish-Speaking Countries: Pilot Series Development and Evaluation.","authors":"Courtney E Sullivan, Lorena Segovia Weber, Paola Viveros Lamas, Dorian Navarro Diaz, Zhaohua Lu, Xiwen Zhao, San Juanita Salinas-Avila, Richard J Ramos, Kristin M Belderson, Julia Challinor","doi":"10.1177/27527530221121729","DOIUrl":"10.1177/27527530221121729","url":null,"abstract":"<p><p><b>Background:</b> To address the need for standardized, comprehensive chemotherapy/biotherapy education in Latin American and Caribbean (LAC) countries, the Association of Pediatric Hematology/Oncology Nurses (APHON) Pediatric Chemotherapy/Biotherapy Provider and Instructor program courses were culturally adapted, translated to Spanish, and piloted. The process of course adaptation and implementation are described. A Context, Input, Process, Product model outcomes evaluation determined: (a) differences in pass rates by test version and pilot location, (b) predictors of pass rates, (c) course appropriateness for nurses' education and practice levels, and (d) strategies for course improvements. <b>Methods:</b> The Spanish APHON Pediatric Chemotherapy/Biotherapy Provider program was piloted four times and the Instructor program twice with nurses from Mexico, Central America, the Caribbean, South America, and Spain. Statistical analysis identified factors associated with pass rates. <b>Results:</b> Of the 203 students in four Spanish APHON Provider program courses, data from 108 students (three pilots) were analyzed (one unplanned pilot excluded for missing data). Significant predictors of pass rates included: pediatric oncology frontline nurses (<i>OR</i> = 9.86; 95% CI [2.56, 65.23]; <i>p</i> = .004), nurses dedicated to an inpatient or outpatient unit (non-rotating) (<i>OR</i> = 6.79 [1.29, 51.98]; <i>p</i> = .033), and graduation from a 5-year nursing program (<i>OR</i> = 5.92; 95% CI [1.30, 33.15]; <i>p</i> = .028). <b>Discussion:</b> The Spanish APHON Pediatric Chemotherapy/Biotherapy program was determined appropriate for nurses' education and practice levels in LAC countries. Through the APHON Spanish language instructor network, pediatric oncology nurses in LAC countries have increased access to standardized, comprehensive chemotherapy/biotherapy education.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10073235/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9687669","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":"Concept Analysis of Family-Centered Care in Childhood Cancer: An Evolutionary Approach.","authors":"Jennifer L Wilson","doi":"10.1177/27527530221140060","DOIUrl":"https://doi.org/10.1177/27527530221140060","url":null,"abstract":"<p><p>The purpose of this article is to further develop the concept of family-centered care (FCC) in childhood cancer using Rodgers' evolutionary method of concept analysis. A search of the existing literature related to the overarching concept of FCC revealed several concept analyses specific to hospitalized children and children with chronic illness; however, none of these were specific to children with cancer. Five defining attributes of FCC in childhood cancer were identified through this concept analysis: ripple effect, customized care, family functioning, collaboration, and communication. A definition of FCC in childhood cancer is offered based on identified characteristics of the concept. Findings of this concept analysis provide a starting point for on-going development of the concept of FCC in childhood cancer and may facilitate more rigorous nursing studies involving FCC in childhood cancer.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9690403","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":"Changes in Central Line-Associated Bloodstream Infection (CLABSI) Rates Following Implementation of Levofloxacin Prophylaxis for Children and Adolescents With High-Risk Leukemia.","authors":"Lauri A Linder,&nbsp;Cheryl Gerdy,&nbsp;Yeonjung Jo,&nbsp;Crystal Stark,&nbsp;Andrew Wilson","doi":"10.1177/27527530221122683","DOIUrl":"https://doi.org/10.1177/27527530221122683","url":null,"abstract":"<p><p><b>Background:</b> Despite initiatives to reduce central line-associated bloodstream infection (CLABSI), children and adolescents with hematologic malignancies, as well as those with relapsed disease, remain at the greatest risk for infection. This single-institution project evaluated changes in CLABSI rates following implementation of antibacterial prophylaxis with levofloxacin for patients with high-risk hematologic malignancies. <b>Methods:</b> Positive blood culture events meeting National Health Safety Network surveillance criteria to be classified as CLABSIs from January 1, 2006, to December 31, 2019, were included. Data were organized into four time periods for comparison based on implementation of CLABSI-reduction interventions. Conditional Poisson regression models were used to evaluate the effect of time (intervention period) on CLABSI rates with post hoc Tukey pairwise comparisons between each of the four time periods. <b>Results:</b> From 2006 and 2019, 227 patients experienced 310 CLABSIs. Clinically important decreases in CLABSI rates from baseline (4.84 per 1,000 line days) occurred with implementation of Children's Hospital Association (CHA) bundles (3.29 per 1,000 line days); however, this difference was not significant (<i>p</i>  =  .16). CLABSI rates decreased from baseline with the addition of formalized supportive cares (2.66 per 1,000 line days; incidence rate ratio [IRR]  =  0.60; <i>p</i> < .01), and with the use of antibacterial prophylaxis (1.66 per 1,000 line days; IRR  =  0.35; <i>p</i> < .01). Post hoc comparisons indicated decreased CLABSI rates with the use of antibacterial prophylaxis compared with CHA bundles alone (IRR  =  0.49; <i>p</i>  =  .011) and CHA bundles plus formalized supportive cares (IRR  =  0.58; <i>p</i>  =  .046). <b>Discussion:</b> Results demonstrate sustained success using a practice-based evidence approach to guide CLABSI-reduction interventions. Follow-up research, applying machine learning algorithms, may identify additional risk factors and inform future interventions.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10046374","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":"Ambiguous Expectations of Parent Caregiving for the Child and Adolescent With Cancer at the Hospital and at Home-An Ethnographic Study.","authors":"Louise Ingerslev Roug,&nbsp;Mary Jarden,&nbsp;Ayo Wahlberg,&nbsp;Lisa Lyngsie Hjalgrim,&nbsp;Helena Hansson","doi":"10.1177/27527530221140065","DOIUrl":"https://doi.org/10.1177/27527530221140065","url":null,"abstract":"<p><p><b>Background:</b> Over the past three decades, complex care and treatment have increasingly become the responsibility of parents as home-based care providers, yet little is known about parents' caregiving experiences when considering the variety of care tasks. It is imperative to gain insight into the challenges parents face when managing treatment and care of their child with cancer to ensure optimal parental support and prior to further expansion of home-based parent caregiving. This study aimed to explore the experiences of children and adolescents with cancer, who had received treatment through a portable infusion pump, and their parents in managing different care tasks. It is the first study and forms the basis of the research project INTACTatHome, that develops and tests interventions of home-based intravenous anti-cancer treatment. <b>Methods:</b> Ethnographic fieldwork comprising participant observation and semi-structured interviewing analyzed using qualitative thematic analysis. Thirteen families participated in the study. <b>Results:</b> Three main themes were identified: (1) being a \"mini-nurse\"; (2) dividing care; and (3) managing anxiety and fear, each based on separate sub-themes. These themes were bound together by an overarching theme: \"Ambiguous expectations of parent caregiving.\" <b>Discussion:</b> This study contributes to a deeper understanding of the varying experiences of children and adolescents and their parents in managing different care tasks for a child or adolescent with cancer. It underscores the need to establish clear expectations of parents as caregivers throughout the cancer treatment trajectory. This perspective is crucial when developing and implementing future home-based care services.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9681341","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}