Pub Date : 2021-05-01Epub Date: 2021-02-22DOI: 10.1177/1043454221992293
Kiera Bailie, Lisa Jacques, Angele Phillips, Paula Mahon
Pediatric oncology patients with an external central venous catheter (CVC) in situ can be discharged from the hospital. Caregivers are expected to learn how to care for the CVC prior to discharge while also dealing with their child's new cancer diagnosis. This study aimed to evaluate the perceptions of a CVC education program received by caregivers to identify opportunities for improvement. A qualitative study was conducted in 3 stages, using an evidence-based co-design approach, involving caregivers and one adolescent patient discharged from the British Columbia Children's Hospital Oncology/Hematology/BMT inpatient unit. Stage I involved semi-structured interviews to gain feedback on the existing CVC education program. In Stage II, educational resources were updated or developed and implemented. For Stage III, the revised CVC education program was evaluated through a focus group and semi-structured interviews. Interview transcripts were analyzed using QSR NVivo®. The original CVC education program was overall well received. Repeated instruction and support provided by nurses was reported to have increased confidence with performing CVC skills. Participants appreciated the multimodal approach to meet learning needs and expressed interest in additional visual aids. Inconsistencies in nurses' practice and offers of "tips and tricks" were identified to be challenging for caregivers while learning a new skill. Videos depicting CVC care were developed to provide an additional visual tool, decreased inconsistencies in care, and support to caregivers at home. Caring for a CVC at home is challenging and overwhelming for caregivers. A standardized multimodal education program is required to support caregivers at home.
{"title":"Exploring Perceptions of Education for Central Venous Catheter Care at Home.","authors":"Kiera Bailie, Lisa Jacques, Angele Phillips, Paula Mahon","doi":"10.1177/1043454221992293","DOIUrl":"https://doi.org/10.1177/1043454221992293","url":null,"abstract":"<p><p>Pediatric oncology patients with an external central venous catheter (CVC) in situ can be discharged from the hospital. Caregivers are expected to learn how to care for the CVC prior to discharge while also dealing with their child's new cancer diagnosis. This study aimed to evaluate the perceptions of a CVC education program received by caregivers to identify opportunities for improvement. A qualitative study was conducted in 3 stages, using an evidence-based co-design approach, involving caregivers and one adolescent patient discharged from the British Columbia Children's Hospital Oncology/Hematology/BMT inpatient unit. Stage I involved semi-structured interviews to gain feedback on the existing CVC education program. In Stage II, educational resources were updated or developed and implemented. For Stage III, the revised CVC education program was evaluated through a focus group and semi-structured interviews. Interview transcripts were analyzed using QSR NVivo<sup>®</sup>. The original CVC education program was overall well received. Repeated instruction and support provided by nurses was reported to have increased confidence with performing CVC skills. Participants appreciated the multimodal approach to meet learning needs and expressed interest in additional visual aids. Inconsistencies in nurses' practice and offers of \"tips and tricks\" were identified to be challenging for caregivers while learning a new skill. Videos depicting CVC care were developed to provide an additional visual tool, decreased inconsistencies in care, and support to caregivers at home. Caring for a CVC at home is challenging and overwhelming for caregivers. A standardized multimodal education program is required to support caregivers at home.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 3","pages":"157-165"},"PeriodicalIF":1.7,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454221992293","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25392872","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-05-01Epub Date: 2021-03-08DOI: 10.1177/1043454221992301
Victoria Szenes, Rachel Bright, Deborah Diotallevi, Giselle Melendez, Cassie Martinez, Nicole Zakak, James Killinger, Stephen Gilheeney, Stephen S Roberts, Mini Kamboj, Julia Glade Bender, Andrew L Kung, Farid Boulad
Background: Severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) first reached the United States in January 2020. Located in New York City (NYC), MSK Kids, at Memorial Sloan Kettering Cancer Center services, is one of the largest pediatric cancer centers in the U.S., caring for children, teenagers, and young adults with cancer, immune deficiencies, and blood disorders. Methods: Implementation for infection mitigation and ongoing care of patients included: (1) the creation of a strategic planning team of physicians, advanced practice providers, nurses, and administrators to develop guidance and workflows, (2) continuous reassessment of patients' needs for hospital services and visit frequency, (3) the use of telemedicine to replace in-person visits, (4) the use of satellite regional centers to manage patients living outside NYC, (5) pre-screening of patients prior to visits for risks and symptoms of coronavirus disease 2019 (COVID-19) infection, (6) day-of-service screening for risks or symptoms of COVID-19 infection, (7) surveillance testing of children and their caregivers, and (8) creation of cohort plans for the management of COVID-19 positive and uninfected patients within the same institution, in both the outpatient and inpatient settings. Results: We describe the timeline for planning mitigation during the first weeks of the pandemic, and detail in a stepwise fashion the rationale and implementation of COVID-19 containment efforts in the context of a large pediatric oncology program. Discussion: Our experience offers a model on which to base strategic planning efforts at other pediatric oncology centers, for continued preparedness to combat the threat posed by SARS-CoV-2 worldwide.
{"title":"Stepwise Strategic Mitigation Planning in a Pediatric Oncology Center During the COVID-19 Pandemic.","authors":"Victoria Szenes, Rachel Bright, Deborah Diotallevi, Giselle Melendez, Cassie Martinez, Nicole Zakak, James Killinger, Stephen Gilheeney, Stephen S Roberts, Mini Kamboj, Julia Glade Bender, Andrew L Kung, Farid Boulad","doi":"10.1177/1043454221992301","DOIUrl":"https://doi.org/10.1177/1043454221992301","url":null,"abstract":"<p><p><b>Background:</b> Severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) first reached the United States in January 2020. Located in New York City (NYC), MSK Kids, at Memorial Sloan Kettering Cancer Center services, is one of the largest pediatric cancer centers in the U.S., caring for children, teenagers, and young adults with cancer, immune deficiencies, and blood disorders. <b>Methods:</b> Implementation for infection mitigation and ongoing care of patients included: (1) the creation of a strategic planning team of physicians, advanced practice providers, nurses, and administrators to develop guidance and workflows, (2) continuous reassessment of patients' needs for hospital services and visit frequency, (3) the use of telemedicine to replace in-person visits, (4) the use of satellite regional centers to manage patients living outside NYC, (5) pre-screening of patients prior to visits for risks and symptoms of coronavirus disease 2019 (COVID-19) infection, (6) day-of-service screening for risks or symptoms of COVID-19 infection, (7) surveillance testing of children and their caregivers, and (8) creation of cohort plans for the management of COVID-19 positive and uninfected patients within the same institution, in both the outpatient and inpatient settings. <b>Results:</b> We describe the timeline for planning mitigation during the first weeks of the pandemic, and detail in a stepwise fashion the rationale and implementation of COVID-19 containment efforts in the context of a large pediatric oncology program. <b>Discussion:</b> Our experience offers a model on which to base strategic planning efforts at other pediatric oncology centers, for continued preparedness to combat the threat posed by SARS-CoV-2 worldwide.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 3","pages":"176-184"},"PeriodicalIF":1.7,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454221992301","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25459555","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-05-01Epub Date: 2021-03-26DOI: 10.1177/1043454221992302
Elizabeth Carr, Leah Rosengarten
This systematic appraisal explores the literature surrounding treatment adherence in teenagers and young adults (TYAs) with cancer, with the aim of identifying influential factors that could affect adherence rates. This area is particularly important due to the increased risk of relapse and death associated with nonadherent behavior. In addition, TYAs are found to be the age group least likely to adhere to medical regimes. A comprehensive review of the literature was conducted and seven studies met the inclusion criteria, the articles were then critiqued using a data extraction form and eight themes were generated and discussed. This review highlights the complexities and difficulties in measuring adherence, as well as the key factors affecting adherence, before identifying implications for practice. Good communication and relationships are crucial between all parties involved in TYAs' care including the patients, professionals, parents, and peers. A model of adherence was adapted on the basis of the result of the systematic review, other literature pertaining to adherence in TYAs, and the clinical experience of the authors. Personal factors and external factors, along with treatment factors and interactions with the system all have an effect on the patient's response or ability to adhere. It is apparent that there is a need for more high-quality qualitative and quantitative research in this area, with an emphasis on finding interventions that directly improve adherence specific to this age group.
{"title":"Teenagers and Young Adults with Cancer: An Exploration of Factors Contributing to Treatment Adherence.","authors":"Elizabeth Carr, Leah Rosengarten","doi":"10.1177/1043454221992302","DOIUrl":"https://doi.org/10.1177/1043454221992302","url":null,"abstract":"<p><p>This systematic appraisal explores the literature surrounding treatment adherence in teenagers and young adults (TYAs) with cancer, with the aim of identifying influential factors that could affect adherence rates. This area is particularly important due to the increased risk of relapse and death associated with nonadherent behavior. In addition, TYAs are found to be the age group least likely to adhere to medical regimes. A comprehensive review of the literature was conducted and seven studies met the inclusion criteria, the articles were then critiqued using a data extraction form and eight themes were generated and discussed. This review highlights the complexities and difficulties in measuring adherence, as well as the key factors affecting adherence, before identifying implications for practice. Good communication and relationships are crucial between all parties involved in TYAs' care including the patients, professionals, parents, and peers. A model of adherence was adapted on the basis of the result of the systematic review, other literature pertaining to adherence in TYAs, and the clinical experience of the authors. Personal factors and external factors, along with treatment factors and interactions with the system all have an effect on the patient's response or ability to adhere. It is apparent that there is a need for more high-quality qualitative and quantitative research in this area, with an emphasis on finding interventions that directly improve adherence specific to this age group.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 3","pages":"190-204"},"PeriodicalIF":1.7,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454221992302","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25521054","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-05-01Epub Date: 2021-04-01DOI: 10.1177/1043454221992303
Marieke Van Schoors, Laura Sels, Liesbet Goubert, Lesley L Verhofstadt
Background: Pediatric cancer is a severe life-threatening disease that poses significant challenges to the life of the siblings. Based on the social ecology model, the current study is aimed at exploring the association between intrafamilial (family functioning, family support) and contextual (network support) resources, and the individual adjustment of siblings facing cancer in their brother/sister. Methods: Participants were 81 siblings of children with leukemia or non-Hodgkin lymphoma. The mean siblings' age was 10.32 years. Siblings completed the Family Environment Scale, the Social Support Questionnaire for Children, the Situation-Specific Emotional Reactions Questionnaire, and the Pediatric Quality of Life Inventory. Data were analyzed using a multi-level approach. Results: Family functioning, family support, and network support proved to be related to siblings' cancer-related emotional reactions post-diagnosis. In addition, the present study suggests taking into account the gender of the ill child and the age of the siblings. Discussion: Our findings led to the conclusion that resources at both the intrafamilial level and the contextual level are important for explaining sibling adjustment post-diagnosis. Interventions targeting the sibling, the family, and the external network are warranted to enhance sibling adjustment.
{"title":"Siblings Dealing with Pediatric Cancer: A Family- and Context-oriented Approach.","authors":"Marieke Van Schoors, Laura Sels, Liesbet Goubert, Lesley L Verhofstadt","doi":"10.1177/1043454221992303","DOIUrl":"https://doi.org/10.1177/1043454221992303","url":null,"abstract":"<p><p><b>Background</b>: Pediatric cancer is a severe life-threatening disease that poses significant challenges to the life of the siblings. Based on the social ecology model, the current study is aimed at exploring the association between intrafamilial (family functioning, family support) and contextual (network support) resources, and the individual adjustment of siblings facing cancer in their brother/sister. <b>Methods</b>: Participants were 81 siblings of children with leukemia or non-Hodgkin lymphoma. The mean siblings' age was 10.32 years. Siblings completed the Family Environment Scale, the Social Support Questionnaire for Children, the Situation-Specific Emotional Reactions Questionnaire, and the Pediatric Quality of Life Inventory. Data were analyzed using a multi-level approach. <b>Results</b>: Family functioning, family support, and network support proved to be related to siblings' cancer-related emotional reactions post-diagnosis. In addition, the present study suggests taking into account the gender of the ill child and the age of the siblings. <b>Discussion</b>: Our findings led to the conclusion that resources at both the intrafamilial level and the contextual level are important for explaining sibling adjustment post-diagnosis. Interventions targeting the sibling, the family, and the external network are warranted to enhance sibling adjustment.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 3","pages":"166-175"},"PeriodicalIF":1.7,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454221992303","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25539613","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-05-01Epub Date: 2021-02-22DOI: 10.1177/1043454221992294
Jenae Roseland
Background: Febrile neutropenia in pediatric oncology patients is considered a medical emergency. This population is at risk for infection-related complications due to their immunocompromised state. The purpose of this evidence-based quality improvement project was to reduce the time in minutes from admission to antibiotic administration to within 60 min in at least 90% of pediatric oncology patients with a central line presenting with febrile neutropenia. Methods: An order set titled "FAST BREAK-Fever Neutropenia Admission" was created to expedite care during the first hour of admission, including labs, blood cultures, and a one-time STAT dose of intravenous cefepime. Education was provided to all providers and nursing staff on the unit through inservices, handouts, emails, and computer reminders. Results: Within three months from the FAST BREAK order set implementation, compliance for administering antibiotics within 60 min from admission occurred in 100% of admissions. Other outcomes included 100% compliance in provider utilization of the order set, reduction in the average time from admission to antibiotic administration, and cost reduction related to cefepime waste. Discussion: The FAST BREAK order set is now considered the standard of care in the Pediatric Cancer Center at the University of Iowa Stead Family Children's Hospital. Maintaining the expectation of prompt antibiotic administration for febrile neutropenia in pediatric oncology patients with a central line will improve patient care, reduce adverse outcomes in this vulnerable population, and correlate with national guidelines for antibiotic administration in febrile oncology patients.
{"title":"Improving Antibiotic Timing in Febrile Neutropenia for Pediatric Oncology Patients with a Central Line.","authors":"Jenae Roseland","doi":"10.1177/1043454221992294","DOIUrl":"https://doi.org/10.1177/1043454221992294","url":null,"abstract":"<p><p><b>Background:</b> Febrile neutropenia in pediatric oncology patients is considered a medical emergency. This population is at risk for infection-related complications due to their immunocompromised state. The purpose of this evidence-based quality improvement project was to reduce the time in minutes from admission to antibiotic administration to within 60 min in at least 90% of pediatric oncology patients with a central line presenting with febrile neutropenia. <b>Methods:</b> An order set titled \"FAST BREAK-Fever Neutropenia Admission\" was created to expedite care during the first hour of admission, including labs, blood cultures, and a one-time STAT dose of intravenous cefepime. Education was provided to all providers and nursing staff on the unit through inservices, handouts, emails, and computer reminders. <b>Results:</b> Within three months from the FAST BREAK order set implementation, compliance for administering antibiotics within 60 min from admission occurred in 100% of admissions. Other outcomes included 100% compliance in provider utilization of the order set, reduction in the average time from admission to antibiotic administration, and cost reduction related to cefepime waste. <b>Discussion:</b> The FAST BREAK order set is now considered the standard of care in the Pediatric Cancer Center at the University of Iowa Stead Family Children's Hospital. Maintaining the expectation of prompt antibiotic administration for febrile neutropenia in pediatric oncology patients with a central line will improve patient care, reduce adverse outcomes in this vulnerable population, and correlate with national guidelines for antibiotic administration in febrile oncology patients.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 3","pages":"185-189"},"PeriodicalIF":1.7,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454221992294","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25392464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-03-01Epub Date: 2020-12-17DOI: 10.1177/1043454220980253
Ellen M Lavoie Smith, Clare Kuisell, Grace Kanzawa-Lee, Celia M Bridges, Youmin Cho, Jenna Swets, Jamie L Renbarger, Laura S Gilchrist
Background: Chemotherapy-induced peripheral neuropathy (CIPN) is commonly experienced by children receiving neurotoxic chemotherapy. No validated pediatric CIPN patient-reported outcome (PRO) measures exist. Purpose: To test sensitivity, internal consistency reliability, content and convergent validity, and feasibility of the Pediatric Chemotherapy-Induced Neuropathy (P-CIN), an electronic PRO measure for assessing CIPN in children who received neurotoxic chemotherapy. Method: Five experts evaluated content validity of the 14-item P-CIN. Children 5 to 17 years old with CIPN (N = 79) completed the P-CIN via tablet computer; a subset (n = 26) also underwent neurological examinations using the Pediatric-Modified Total Neuropathy Score. Following preliminary analyses, one item was deleted and three others modified. The revised P-CIN was retested with patients (n = 6) who also completed the Bruininks-Oseretsky Test of Motor Proficiency motor function assessment. Means, item response ranges, standard deviations, content validity indexes, Cronbach's alphas, and correlation coefficients were calculated. Results: Mean participant age was 11.25 (SD = 4.0) years. Most had acute leukemia (62.5%) and received vincristine (98.7%). Content validity index coefficients ranged from .80 to 1.0 (p = .05). For 9 of 14 items, responses ranged from 0 to 4 or 5; response ranges for toe numbness, pick up a coin, and three of four pain items were 0 to 3. After deleting one item, Cronbach's alpha coefficient was .83. P-CIN scores were strongly associated with Pediatric-Modified Total Neuropathy Score (r = .52, p < .01) and Bruininks-Oseretsky Test of Motor Proficiency (r = -.83, p = .04) scores. Sixty-eight percent of children 6 to 17 years old completed P-CIN independently. Discussion: Preliminary evidence suggests that the 13-item P-CIN is internally consistent, is valid, and can be completed independently by children ≥ 6 years. However, we recommend additional testing.
{"title":"Assessment of Pediatric Chemotherapy-Induced Peripheral Neuropathy Using a New Patient-Reported Outcome Measure: The P-CIN.","authors":"Ellen M Lavoie Smith, Clare Kuisell, Grace Kanzawa-Lee, Celia M Bridges, Youmin Cho, Jenna Swets, Jamie L Renbarger, Laura S Gilchrist","doi":"10.1177/1043454220980253","DOIUrl":"https://doi.org/10.1177/1043454220980253","url":null,"abstract":"<p><p><b>Background:</b> Chemotherapy-induced peripheral neuropathy (CIPN) is commonly experienced by children receiving neurotoxic chemotherapy. No validated pediatric CIPN patient-reported outcome (PRO) measures exist. <b>Purpose:</b> To test sensitivity, internal consistency reliability, content and convergent validity, and feasibility of the Pediatric Chemotherapy-Induced Neuropathy (P-CIN), an electronic PRO measure for assessing CIPN in children who received neurotoxic chemotherapy. <b>Method:</b> Five experts evaluated content validity of the 14-item P-CIN. Children 5 to 17 years old with CIPN (<i>N</i> = 79) completed the P-CIN via tablet computer; a subset (<i>n</i> = 26) also underwent neurological examinations using the Pediatric-Modified Total Neuropathy Score. Following preliminary analyses, one item was deleted and three others modified. The revised P-CIN was retested with patients (<i>n</i> = 6) who also completed the Bruininks-Oseretsky Test of Motor Proficiency motor function assessment. Means, item response ranges, standard deviations, content validity indexes, Cronbach's alphas, and correlation coefficients were calculated. <b>Results:</b> Mean participant age was 11.25 (<i>SD</i> = 4.0) years. Most had acute leukemia (62.5%) and received vincristine (98.7%). Content validity index coefficients ranged from .80 to 1.0 (<i>p</i> = .05). For 9 of 14 items, responses ranged from 0 to 4 or 5; response ranges for toe numbness, pick up a coin, and three of four pain items were 0 to 3. After deleting one item, Cronbach's alpha coefficient was .83. P-CIN scores were strongly associated with Pediatric-Modified Total Neuropathy Score (<i>r</i> = .52, <i>p</i> < .01) and Bruininks-Oseretsky Test of Motor Proficiency (<i>r</i> = -.83, <i>p</i> = .04) scores. Sixty-eight percent of children 6 to 17 years old completed P-CIN independently. <b>Discussion:</b> Preliminary evidence suggests that the 13-item P-CIN is internally consistent, is valid, and can be completed independently by children ≥ 6 years. However, we recommend additional testing.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 2","pages":"131-141"},"PeriodicalIF":1.7,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220980253","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38383161","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This study aimed to evaluate the intensity and characteristics of pain, which was assessed at home by children with cancer or their parents using an app for mobile devices, for a 1-month poststudy enrollment. The participants of this observational prospective study were outpatients at the hematology/oncology department of an academic hospital in Italy, aged between 0 and 21 years, and receiving hospital-at-home care. Patients or their parents were asked to assess pain levels for one month at home using the Faces, Legs, Arms, Cry, and Consolability (FLACC) scale for patients aged <4 years and the Ospedale Pediatrico Bambino Gesù (OPBG) tool for patients aged 4 to 21 years. At study conclusion, parents were asked to complete a survey about their satisfaction with the app and to rate their child's health in general, pain intensity, and frequency in the past 4 weeks. Of the 124 participants using the app, 94 (75.8%) reported pain (≥1) at least once during the 1 month. Of these, 53 (56.4%) at most reported mild pain, 33 (35.1%) moderate pain, and eight (8.5%) severe pain. The abdomen was identified as the most frequent (56.3%) pain site by patients aged 4 to 21 years. The child's maximum pain intensity during the study period was negatively correlated with the parent's report of the child's health during the past month (r = -.29, p < .01). Most of the participants were satisfied with the app and the information received about app usage. In conclusion, the app facilitated pain assessment and tracking in patients receiving hospital-at-home care.
本研究旨在评估疼痛的强度和特征,由癌症儿童或其父母在家中使用移动设备应用程序进行评估,研究注册后1个月。这项观察性前瞻性研究的参与者是意大利一家学术医院血液科/肿瘤科的门诊患者,年龄在0至21岁之间,接受医院在家护理。要求患者或其父母在家中使用面部,腿,手臂,哭泣和安慰(FLACC)量表评估一个月的疼痛水平,年龄为r = -。29, p < 0.01)。大多数参与者对应用程序和收到的应用程序使用信息感到满意。总之,该应用程序促进了接受医院在家护理的患者的疼痛评估和跟踪。
{"title":"Electronic Assessment and Tracking of Pain at Home: A Prospective Study in Children With Hematologic or Solid Tumors.","authors":"Emanuela Tiozzo, Serena Fondi, Valentina Biagioli, Elisa Piccinelli, Francesca Alibrandi, Orsola Gawronski, Immacolata Dall'Oglio, Erika Margarella, Simone Piga, Riccardo Ricci, Italo Ciaralli","doi":"10.1177/1043454220975443","DOIUrl":"https://doi.org/10.1177/1043454220975443","url":null,"abstract":"<p><p>This study aimed to evaluate the intensity and characteristics of pain, which was assessed at home by children with cancer or their parents using an app for mobile devices, for a 1-month poststudy enrollment. The participants of this observational prospective study were outpatients at the hematology/oncology department of an academic hospital in Italy, aged between 0 and 21 years, and receiving hospital-at-home care. Patients or their parents were asked to assess pain levels for one month at home using the Faces, Legs, Arms, Cry, and Consolability (FLACC) scale for patients aged <4 years and the Ospedale Pediatrico Bambino Gesù (OPBG) tool for patients aged 4 to 21 years. At study conclusion, parents were asked to complete a survey about their satisfaction with the app and to rate their child's health in general, pain intensity, and frequency in the past 4 weeks. Of the 124 participants using the app, 94 (75.8%) reported pain (≥1) at least once during the 1 month. Of these, 53 (56.4%) at most reported mild pain, 33 (35.1%) moderate pain, and eight (8.5%) severe pain. The abdomen was identified as the most frequent (56.3%) pain site by patients aged 4 to 21 years. The child's maximum pain intensity during the study period was negatively correlated with the parent's report of the child's health during the past month (<i>r</i> = -.29, <i>p</i> < .01). Most of the participants were satisfied with the app and the information received about app usage. In conclusion, the app facilitated pain assessment and tracking in patients receiving hospital-at-home care.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 2","pages":"82-93"},"PeriodicalIF":1.7,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220975443","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38667839","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-03-01Epub Date: 2020-12-03DOI: 10.1177/1043454220975703
Willyane de Andrade Alvarenga, Ana Carolina Andrade Biaggi Leite, Amanda Aparecida Menochelli, Rebecca Ortiz La Banca, Paula Saud De Bortoli, Rhyquelle Rhibna Neris, Lucila Castanheira Nascimento
Talking to children and adolescents with cancer about spirituality is a challenge. This study aimed to develop and evaluate a conversation model for a spiritual approach with children and adolescents with cancer. It was a methodological study with a systematic approach in three stages: (a) review of the literature for the selection of photographs and guiding questions, (b) using an expert committee to evaluate photographs and preselected questions, and (c) cognitive interview with children and adolescents to test the methodology. The expert committee evaluated and selected 20 photos and their respective guiding questions. Fifteen children and adolescents hospitalized with cancer tested the spirituality conversation model and expressed feelings, values, beliefs, fears, and the meaning they give to life and illness. The implementation of the conversation model can contribute both to the clinical practice, facilitating care for the spiritual dimension of pediatric patients, and to qualitative research on spirituality involving children.
{"title":"How to Talk to Children and Adolescents With Cancer About Spirituality? Establishing a Conversation Model.","authors":"Willyane de Andrade Alvarenga, Ana Carolina Andrade Biaggi Leite, Amanda Aparecida Menochelli, Rebecca Ortiz La Banca, Paula Saud De Bortoli, Rhyquelle Rhibna Neris, Lucila Castanheira Nascimento","doi":"10.1177/1043454220975703","DOIUrl":"https://doi.org/10.1177/1043454220975703","url":null,"abstract":"<p><p>Talking to children and adolescents with cancer about spirituality is a challenge. This study aimed to develop and evaluate a conversation model for a spiritual approach with children and adolescents with cancer. It was a methodological study with a systematic approach in three stages: (a) review of the literature for the selection of photographs and guiding questions, (b) using an expert committee to evaluate photographs and preselected questions, and (c) cognitive interview with children and adolescents to test the methodology. The expert committee evaluated and selected 20 photos and their respective guiding questions. Fifteen children and adolescents hospitalized with cancer tested the spirituality conversation model and expressed feelings, values, beliefs, fears, and the meaning they give to life and illness. The implementation of the conversation model can contribute both to the clinical practice, facilitating care for the spiritual dimension of pediatric patients, and to qualitative research on spirituality involving children.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 2","pages":"116-130"},"PeriodicalIF":1.7,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220975703","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38668254","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: Needle procedures are one of the most distressing practices for pediatric oncology patients. Virtual reality (VR) is a distraction method which offers an extremely realistic and interactive virtual environment and helps reduce needle-related pain and distress. The aim of this study was to evaluate the effects of VR method on pain during venous port access in pediatric oncology patients aged 7 to 18 years.
Method: Children who had cancer and were between the ages of 7 and 18 years and undergoing a port-a-cath access were randomly assigned through blocked randomization to either the VR intervention group or control group. A commercially available VR headset was fitted to children in the intervention group. Immediately after the port access, pain scores were obtained from children's self-reports and parents' proxy reports, using the Wong-Baker FACES Pain Rating Scale.
Results: Descriptive characteristics of the children (n = 71) showed a homogeneous distribution between groups. During the procedure, children in the control group (n = 36; 5.03 ± 3.35) experienced more pain than the children in VR group (n = 35; 2.34 ± 2.76; p < .001). Proxy reports of the parents in the experimental group (1.77 ± 2.46) were found to be lower than those in the control group (4.67 ± 2.56; p < .001).
Conclusions/implications for practice: VR method is effective for reducing pain during venous port access in pediatric oncology patients. VR should be used as a distraction method during venous port access.
{"title":"Effects of Virtual Reality on Pain During Venous Port Access in Pediatric Oncology Patients: A Randomized Controlled Study.","authors":"Remziye Semerci, Melahat Akgün Kostak, Tuba Eren, Gülcan Avci","doi":"10.1177/1043454220975702","DOIUrl":"https://doi.org/10.1177/1043454220975702","url":null,"abstract":"<p><strong>Purpose: </strong>Needle procedures are one of the most distressing practices for pediatric oncology patients. Virtual reality (VR) is a distraction method which offers an extremely realistic and interactive virtual environment and helps reduce needle-related pain and distress. The aim of this study was to evaluate the effects of VR method on pain during venous port access in pediatric oncology patients aged 7 to 18 years.</p><p><strong>Method: </strong>Children who had cancer and were between the ages of 7 and 18 years and undergoing a port-a-cath access were randomly assigned through blocked randomization to either the VR intervention group or control group. A commercially available VR headset was fitted to children in the intervention group. Immediately after the port access, pain scores were obtained from children's self-reports and parents' proxy reports, using the Wong-Baker FACES Pain Rating Scale.</p><p><strong>Results: </strong>Descriptive characteristics of the children (<i>n</i> = 71) showed a homogeneous distribution between groups. During the procedure, children in the control group (<i>n</i> = 36; 5.03 ± 3.35) experienced more pain than the children in VR group (<i>n</i> = 35; 2.34 ± 2.76; <i>p</i> < .001). Proxy reports of the parents in the experimental group (1.77 ± 2.46) were found to be lower than those in the control group (4.67 ± 2.56; <i>p</i> < .001).</p><p><strong>Conclusions/implications for practice: </strong>VR method is effective for reducing pain during venous port access in pediatric oncology patients. VR should be used as a distraction method during venous port access.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 2","pages":"142-151"},"PeriodicalIF":1.7,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220975702","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38356945","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-03-01Epub Date: 2020-12-01DOI: 10.1177/1043454220975457
Valerie E Rogers, Catriona Mowbray, Zahra Rahmaty, Pamela S Hinds
Circadian rhythm disturbances are common among children with cancer, and are associated with poor health outcomes. Social zeitgeber theory suggests that intervening in the cascade of events that disrupt circadian rhythms may improve health outcomes. Light, most potently sunlight, is a "zeitgeber," or environmental cue instrumental in maintaining entrainment of circadian rhythms. Bright white light (BWL) therapy, a proxy for sunlight, has been used successfully to prevent deterioration of circadian rhythms in adult cancer patients, and to reentrain these rhythms in adolescents with circadian rhythm disorders. This study aimed to develop and assess preliminary feasibility of a BWL therapy intervention for supporting circadian health of adolescent cancer survivors. We hypothesized that adolescents could independently manage BWL in their home, coordinated by nurses using a mail-, phone- and internet-based format, with minimal side effects. Adolescents were instructed to use BWL for 30 minutes daily on awakening, for 28 days. Actigraphs, measuring the circadian activity rhythms of sleep and wake, were worn for 7 days at baseline and Week 4. Adverse events were screened serially. Analyses were descriptive and nonparametric. Eight adolescents participated. On average, BWL was used on 61% of days, for 15 minutes per day. Adverse events were generally mild, although one participant discontinued BWL due to persistent BWL-related nausea. This nurse-guided remote BWL therapy intervention in adolescent cancer survivors demonstrated preliminary feasibility. Future studies with larger samples are required to verify the feasibility of this study, and to determine its safety and effectiveness in supporting circadian activity rhythms.
{"title":"A Morning Bright Light Therapy Intervention to Improve Circadian Health in Adolescent Cancer Survivors: Methods and Preliminary Feasibility.","authors":"Valerie E Rogers, Catriona Mowbray, Zahra Rahmaty, Pamela S Hinds","doi":"10.1177/1043454220975457","DOIUrl":"https://doi.org/10.1177/1043454220975457","url":null,"abstract":"<p><p>Circadian rhythm disturbances are common among children with cancer, and are associated with poor health outcomes. Social zeitgeber theory suggests that intervening in the cascade of events that disrupt circadian rhythms may improve health outcomes. Light, most potently sunlight, is a \"zeitgeber,\" or environmental cue instrumental in maintaining entrainment of circadian rhythms. Bright white light (BWL) therapy, a proxy for sunlight, has been used successfully to prevent deterioration of circadian rhythms in adult cancer patients, and to reentrain these rhythms in adolescents with circadian rhythm disorders. This study aimed to develop and assess preliminary feasibility of a BWL therapy intervention for supporting circadian health of adolescent cancer survivors. We hypothesized that adolescents could independently manage BWL in their home, coordinated by nurses using a mail-, phone- and internet-based format, with minimal side effects. Adolescents were instructed to use BWL for 30 minutes daily on awakening, for 28 days. Actigraphs, measuring the circadian activity rhythms of sleep and wake, were worn for 7 days at baseline and Week 4. Adverse events were screened serially. Analyses were descriptive and nonparametric. Eight adolescents participated. On average, BWL was used on 61% of days, for 15 minutes per day. Adverse events were generally mild, although one participant discontinued BWL due to persistent BWL-related nausea. This nurse-guided remote BWL therapy intervention in adolescent cancer survivors demonstrated preliminary feasibility. Future studies with larger samples are required to verify the feasibility of this study, and to determine its safety and effectiveness in supporting circadian activity rhythms.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"38 2","pages":"70-81"},"PeriodicalIF":1.7,"publicationDate":"2021-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220975457","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38320227","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}