Journal of Pediatric Hematology-Oncology Nursing最新文献

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Factors Influencing Pediatric Hematology/Oncology Nurse Retention: A Scoping Review. 影响儿童血液学/肿瘤学护士留任的因素:一项范围回顾。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-11-01 Epub Date: 2022-07-11 DOI: 10.1177/27527530221099899
Madeleine R Macintyre, Brandon W J Brown, Jessica A Schults
{"title":"Factors Influencing Pediatric Hematology/Oncology Nurse Retention: A Scoping Review.","authors":"Madeleine R Macintyre,&nbsp;Brandon W J Brown,&nbsp;Jessica A Schults","doi":"10.1177/27527530221099899","DOIUrl":"https://doi.org/10.1177/27527530221099899","url":null,"abstract":"<p><p><b>Background:</b> Nursing staff retention is an ongoing concern within pediatric hematology/oncology settings globally. Work-related stressors cause emotional burden, psychological distress, and burnout to which nurses respond by leaving their workplace. Consequently, workplace culture and functionality are negatively impacted, quality of care reduces, and potential harm to patients increases. This paper aims to identify the \"most\" influencing factors for intention to leave among pediatric hematology/oncology nurses. <b>Methods:</b> A systematic search was undertaken on 29 July 2021 across five electronic databases, Cumulative Index to Nursing and Allied Health Literature, Joanna Briggs Institute, MEDLINE, PubMed, and Web of Science, using MeSH and keywords related to pediatric hematology/oncology nurse retention. <b>Results:</b> The initial search yielded 283 articles. Following abstract and full-text review, nine articles met inclusion criteria. Across all studies, strong links between health service organizational factors (e.g., unit acuity and time constraints), clinician demographics (e.g., age, education, experience, and coping mechanisms), and nursing retention within pediatric hematology/oncology settings were observed. Direct patient care and long-term relationships with pediatric hematology/oncology patients were identified as the most frequent and intense stressors, while also presenting the most rewarding aspect of the nurse's work. <b>Discussion:</b> Clinician burnout and retention were found to be complex and multifaceted organizational and individual issues, which most importantly evolved from accumulative exposure to specialty-specific stressors. Interventions to prevent clinician burnout and improve staff retention, therefore, need to comprise individual and organizational level strategies specific to the healthcare context.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40580792","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}
引用次数: 2
Ifosfamide-Induced Neurotoxicity in Children with Solid Tumors: A Seven Year Retrospective Analysis of Incidence and Risk Factors. 异环磷酰胺诱导的儿童实体瘤神经毒性:7年发病率和危险因素回顾性分析
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-11-01 Epub Date: 2022-06-27 DOI: 10.1177/27527530221090173
Kristen L Dalton
{"title":"Ifosfamide-Induced Neurotoxicity in Children with Solid Tumors: A Seven Year Retrospective Analysis of Incidence and Risk Factors.","authors":"Kristen L Dalton","doi":"10.1177/27527530221090173","DOIUrl":"https://doi.org/10.1177/27527530221090173","url":null,"abstract":"<p><p><b>Background:</b> Patients with cancer treated with the pro-drug ifosfamide may experience drug-induced neurotoxicity. Ifosfamide-induced neurotoxicity (IIN) is well described in the adult literature, but there is limited knowledge about this toxicity in pediatrics, especially in children with solid tumors. <b>Methods:</b> In this retrospective descriptive study, the author reviewed 7 years of clinical data regarding patients with solid tumors who received ifosfamide at a large, urban pediatric medical center. The author used descriptive statistics and logistic regression to describe the incidence of IIN and identify demographic and clinical factors most likely to be associated with the toxicity. <b>Results:</b> In a sample of 169 pediatric patients who received ifosfamide between 2011 and 2018, 13% developed symptoms of IIN. The author identified ifosfamide doses >2,000 mg/m<sup>2</sup> to be a risk factor for IIN in the study sample (OR 17.82; 95 CI [2.17, 146.18]; <i>p</i> = .0073) and cited other variables as possible risk factors, though each could be linked to participants' ifosfamide exposure. <b>Discussion:</b> This study is the largest to describe IIN specifically in the pediatric solid tumor population. The study findings suggest the pattern of toxicity observed in adult patients should not be assumed in children. The author identified one risk factor that may predispose children to develop IIN and recommends further attention be paid to this toxicity in the pediatric population.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40400595","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}
引用次数: 1
Decreasing Skin Breakdown Around Central Lines in Patients Receiving Thiotepa Prior to Bone Marrow Transplantation. 骨髓移植前接受硫替帕治疗的患者中央线周围皮肤损伤减少。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-11-01 Epub Date: 2022-06-21 DOI: 10.1177/275275302110560011074261
Jami L Melhorn, Marnie Burkett
{"title":"Decreasing Skin Breakdown Around Central Lines in Patients Receiving Thiotepa Prior to Bone Marrow Transplantation.","authors":"Jami L Melhorn,&nbsp;Marnie Burkett","doi":"10.1177/275275302110560011074261","DOIUrl":"https://doi.org/10.1177/275275302110560011074261","url":null,"abstract":"<p><p>Skin breakdown occurring around central line dressings increases the risk for infection and bacteremia in all patients. The risk is magnified when experienced in pediatric patients receiving marrow-ablative therapy. A staff nurse on an inpatient pediatric oncology and bone marrow transplant unit noted an increased incidence of skin breakdown around central line dressings in patients receiving Thiotepa prior to bone marrow transplantation. Although there is a wealth of information surrounding routine care of central venous access devices, there is little evidence surrounding care with impaired skin integrity. A staff nurse turned to expert opinion and consensus revealed the use of nonocclusive dressings for central lines. A new protocol for changing central line dressings was developed to decrease the rate of skin breakdown. The protocol utilized gauze and a self-adherent wrap instead of tape to secure central lines. Bone marrow transplant staff nurses were educated prior to the practice change, and compliance was monitored through observation and review of documentation in the electronic medical record. A retrospective chart review compared the rate of skin breakdown and central line associated blood stream infections pre- and postpractice change. The overall percentage of skin breakdown surrounding central lines was reduced by over 80%.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40165183","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}
引用次数: 1
Consensus on Quality Indicators for Pediatric Oncology Nursing Care in Mainland China: A Delphi Method and Analytic Hierarchy Process. 中国大陆儿童肿瘤护理质量指标的共识:德尔菲法与层次分析法。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-09-01 Epub Date: 2022-01-15 DOI: 10.1177/27527530211068727
Mengxue He, Hong Lu, Nanping Shen, Xinyi Wu, Guomei Shen, Xuezhen Zhou, Min Shen, Lin Mo, Hsu Lily
{"title":"Consensus on Quality Indicators for Pediatric Oncology Nursing Care in Mainland China: A Delphi Method and Analytic Hierarchy Process.","authors":"Mengxue He,&nbsp;Hong Lu,&nbsp;Nanping Shen,&nbsp;Xinyi Wu,&nbsp;Guomei Shen,&nbsp;Xuezhen Zhou,&nbsp;Min Shen,&nbsp;Lin Mo,&nbsp;Hsu Lily","doi":"10.1177/27527530211068727","DOIUrl":"https://doi.org/10.1177/27527530211068727","url":null,"abstract":"<p><p><b>Background:</b> Because routine nursing quality indicators are not suitable to evaluate pediatric oncology nursing care, this study aimed to identify a set of quality indicators for pediatric oncology nursing care in mainland China. <b>Method:</b> This prospective investigation utilized a modified Delphi technique and an analytic hierarchy process. A survey questionnaire was developed using a literature review and semi-structured interviews. Fifteen invited experts evaluated the importance of potential indicators through three rounds of Delphi survey by email in 2018. The importance weight of each indicator was identified through analytic hierarchy process. <b>Results:</b> In the Delphi survey, the average authoritative coefficient was 0.93-0.96 for each round of the inquiry. After three rounds of survey, 29 quality indicators were identified as important nursing outcomes for assessing the quality of pediatric oncology nursing care in mainland China. The importance rating mean score of indicators ranged between 4.67 and 5.00 on a 5-point scale, and the variation coefficient ranged between 0 and 0.19. Expert-assigned indicator importance weight varied between 0.0040 and 0.0870. <b>Conclusion:</b> This study identified an indicator system with 29 nursing-sensitive quality indicators that may represent potential indicator candidates for quality assessment of pediatric oncology nursing practice in mainland China.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40374364","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}
引用次数: 0
The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for 131I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study. 神经母细胞瘤患儿及其父母在单间隔离治疗期间的经验:一项定性描述性研究。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-09-01 Epub Date: 2022-01-15 DOI: 10.1177/27527530211068749
Cynthia M LaFond, Alyssa Yost, Kelly Lankin, Megha Kilaru, Susan L Cohn
{"title":"The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for <sup>131</sup>I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study.","authors":"Cynthia M LaFond,&nbsp;Alyssa Yost,&nbsp;Kelly Lankin,&nbsp;Megha Kilaru,&nbsp;Susan L Cohn","doi":"10.1177/27527530211068749","DOIUrl":"https://doi.org/10.1177/27527530211068749","url":null,"abstract":"<p><p><b>Background:</b> Administration of <sup>131</sup>I-metaiodobenzylguanidine (<sup>131</sup>I-MIBG) for neuroblastoma requires hospitalization in single-room isolation and limits caregiver physical contact due to the child's radioactive burden. Though used for decades, there is a dearth of research on the experiences of children and their parents while isolated. <b>Methods:</b> This qualitative descriptive study evaluated the experience of children with neuroblastoma undergoing single-room isolation for <sup>131</sup>I-MIBG therapy and their parents. Ten nurses, nine parents, and five children were interviewed; transcripts were analyzed applying a conventional content analysis approach. <b>Results:</b> Child themes included overall experiences ranging from positive to negative; emotional stress was common; symptoms were common but mostly managed; the children were adequately prepared for isolation; and audiovisual technology and entertainment helped. The indwelling urinary catheter was a source of emotional stress and/or pain for several children. Parent themes included I thought it was going to be a lot worse; it gets better with time; feeling concerned and overwhelmed; prepared as much as you can be; and you feel like you're not alone. <b>Discussion:</b> Findings suggest that children and parents would benefit from additional coping support interventions to address emotional distress. Efforts should be made to identify other sources of technology or room designs that can maximize the child's sense of connection with parents and healthcare professionals. Additional research is needed to examine the impact of this isolation experience on the long-term psychological outcomes of children and parents.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40374367","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}
引用次数: 2
The Effects of the Activity of Making Jewelry From Beads on the Anxiety Levels of Children With Cancer: A Randomised Controlled Study. 用珠子制作珠宝对癌症儿童焦虑水平的影响:一项随机对照研究。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-09-01 Epub Date: 2022-02-03 DOI: 10.1177/27527530221068760
Ulviye Günay, Abdullah Sarman, Uygar Salman, Aydan Selen Yılmaz
{"title":"The Effects of the Activity of Making Jewelry From Beads on the Anxiety Levels of Children With Cancer: A Randomised Controlled Study.","authors":"Ulviye Günay,&nbsp;Abdullah Sarman,&nbsp;Uygar Salman,&nbsp;Aydan Selen Yılmaz","doi":"10.1177/27527530221068760","DOIUrl":"https://doi.org/10.1177/27527530221068760","url":null,"abstract":"<p><p><b>Background:</b> Children hospitalized for cancer treatment are known to experience high levels of anxiety. This study aimed to examine the effects of making jewelry from beads on the state and trait anxiety levels of children with cancer. <b>Methods:</b> This parallel group, randomized controlled trial was conducted on 62 children aged 7-18 who were being treated for cancer. The children were selected using the random sampling method. The jewelry-making sessions with the children in the intervention group were held twice a week for four weeks. Data were analysed using the chi-square test, the Student's <i>t</i>-test, the independent samples <i>t</i>-test and linear regression. <b>Results:</b> The state anxiety levels of the children in the intervention group decreased both in the first week and the fourth week after making jewelry. The difference in the average post-test scores between the two groups was found to be significant (<i>p</i> < .05). The fourth week average trait anxiety score of the children in the intervention group decreased (<i>M</i>  =  33.2) in comparison to the average score of the control group (<i>M</i>  =  36.5). The difference between the two groups was found to be significant (<i>p</i> < .001). <b>Discussion:</b> This study found that the activity of making jewelry from beads was effective in reducing the state and trait anxiety levels of children with cancer.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40374362","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}
引用次数: 0
Symptoms of Survivors of Pediatric Hematopoietic Stem Cell Transplant by Age, Sex, and Transplant Type. 按年龄、性别和移植类型划分的儿童造血干细胞移植幸存者的症状
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-09-01 DOI: 10.1177/27527530211068746
Caroline F Morrison, Sarah Drake, Nathan L Basile, Mary Jane Horn, Joshua Lambert, Kasiani C Myers, Ahna L H Pai
{"title":"Symptoms of Survivors of Pediatric Hematopoietic Stem Cell Transplant by Age, Sex, and Transplant Type.","authors":"Caroline F Morrison,&nbsp;Sarah Drake,&nbsp;Nathan L Basile,&nbsp;Mary Jane Horn,&nbsp;Joshua Lambert,&nbsp;Kasiani C Myers,&nbsp;Ahna L H Pai","doi":"10.1177/27527530211068746","DOIUrl":"https://doi.org/10.1177/27527530211068746","url":null,"abstract":"<p><p><b>Purpose:</b> The purpose of this study was to describe symptoms experienced by survivors of pediatric hematopoietic stem cell transplant (HSCT), and demographic and treatment-factors associated with ongoing symptomology. <b>Methods:</b> Fifty pediatric survivors completed a cross-sectional pilot study. Questionnaires were administered online via REDCap to assess symptoms experienced in the last week. Survivors also consented to a medical record chart review. <b>Results:</b> Survivors were on average 5.4 years post-HSCT (range 1.1 to 9 years), male (58%), and Caucasian (80%) who received an allogeneic HSCT (92%). The most commonly reported symptoms were difficulty concentrating (42.5%), pain (38%), worry (38%), nervousness (37.5%), and lack of energy/fatigue (34%). Survivors reported up to 14 symptoms, with 90% of the sample experiencing at least one symptom in the previous week. Average number of symptoms varied by age group between 2.1 (8-9 years) and 6.8 (18 and older). Age and female gender were associated with higher levels of fatigue. <b>Conclusions:</b> The majority of survivors experienced at least one symptom in the previous week. Neuropsychological symptoms and pain endure well into survivorship that can influence outcomes such as function and health-related quality of life (HRQOL). Research is needed on biological mechanisms of ongoing symptomology, effective interventions to prevent or mitigate symptoms, and the impact of symptoms on patient outcomes including daily functioning and HRQOL. <b>Implications</b> Survivors of pediatric HSCT continued to experience symptoms for up to nine years. Survivors should be frequently screened for symptoms, as symptoms may affect function, learning/employment outcomes, and HRQOL.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9807777/pdf/10.1177_27527530211068746.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9093332","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}
引用次数: 0
Day-to-Day Decision Making by Adolescents and Young Adults with Cancer. 青少年和青年癌症患者的日常决策。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-09-01 DOI: 10.1177/27527530211068718
Kimberly A Pyke-Grimm, Linda S Franck, Bonnie Halpern-Felsher, Robert E Goldsby, Roberta S Rehm
{"title":"Day-to-Day Decision Making by Adolescents and Young Adults with Cancer.","authors":"Kimberly A Pyke-Grimm,&nbsp;Linda S Franck,&nbsp;Bonnie Halpern-Felsher,&nbsp;Robert E Goldsby,&nbsp;Roberta S Rehm","doi":"10.1177/27527530211068718","DOIUrl":"https://doi.org/10.1177/27527530211068718","url":null,"abstract":"<p><p><b>Background:</b> Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. <b>Objective:</b> To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. <b>Methods:</b> This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. <b>Results:</b> Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. <b>Conclusions:</b> Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. <b>Implications for Practice:</b> Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9807778/pdf/10.1177_27527530211068718.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9077784","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}
引用次数: 1
Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia. 小儿镰状细胞性贫血患者接受慢性红细胞输注疗法的障碍和促进因素。
IF 1 4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-07-01 Epub Date: 2022-03-14 DOI: 10.1177/27527530211073874
Alyssa M Schlenz, Shannon M Phillips, Martina Mueller, Cathy L Melvin, Robert J Adams, Julie Kanter
{"title":"Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia.","authors":"Alyssa M Schlenz, Shannon M Phillips, Martina Mueller, Cathy L Melvin, Robert J Adams, Julie Kanter","doi":"10.1177/27527530211073874","DOIUrl":"10.1177/27527530211073874","url":null,"abstract":"<p><p><b>Background:</b> Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. <b>Methods:</b> A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. <b>Results:</b> Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included <i>Logistical Challenges</i>, <i>Obtaining and Maintaining Venous Access</i>, <i>Alloantibodies/Alloimmunization and Reactions</i>, and <i>Iron Overload and Adherence to Chelation Therapy</i>. Key facilitator themes included <i>Nursing and Non-nursing Staff Support</i>, <i>Positive Child/Family Experiences</i>, <i>Logistical Help and Social Resources</i>, <i>Blood Bank and Access to Blood</i>, and <i>Transfusion-Specific Resources</i>. <b>Discussion:</b> The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9462376/pdf/10.1177_27527530211073874.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9460386","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}
引用次数: 0
Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer. 通过为癌症儿童开发的症状评估应用程序通知父母作为照顾者。
4区 医学
Journal of Pediatric Hematology-Oncology Nursing Pub Date : 2022-07-01 DOI: 10.1177/27527530211073307
Katherine M Bernier Carney, Kristin Stegenga, Lauri A Linder
{"title":"Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer.","authors":"Katherine M Bernier Carney,&nbsp;Kristin Stegenga,&nbsp;Lauri A Linder","doi":"10.1177/27527530211073307","DOIUrl":"https://doi.org/10.1177/27527530211073307","url":null,"abstract":"<p><p><b>Background:</b> Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. <b>Methods:</b> Nineteen parents (18 mothers; median 35 years old, range 26-48 years) of children (6-12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child's trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. <b>Results:</b> Parents perceived the app to (1) elicit the child's voice about his/her symptom experience; (2) provide a supportive and safe environment for the child to report symptoms; and (3) create an opportunity to facilitate communication between the child, parent, and clinical team. Parents expressed a willingness for their child to represent his/her experience with the app so that they could make informed decisions regarding symptom care. <b>Discussion:</b> Perceived benefits of the app extended to parents as they described developing further insight into their child's cancer experience. The knowledge gained allowed parents the potential to enhance symptom communication and supportive care strategies. Future research should further evaluate how mHealth tools facilitate shared symptom management between children receiving treatment for cancer and their caregivers.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9527534/pdf/10.1177_27527530211073307.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10362089","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}
引用次数: 0
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