Journal of Pediatric Oncology Nursing最新文献_第10页

Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment 父母与子女对癌症诊断与治疗的偏好与沟通方式

IF 1.7 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-25 DOI: 10.1177/1043454219859235

Lauren Smith, Anna M. Maybach, A. Feldman, A. Darling, T. Akard, M. Gilmer

{"title":"Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment","authors":"Lauren Smith, Anna M. Maybach, A. Feldman, A. Darling, T. Akard, M. Gilmer","doi":"10.1177/1043454219859235","DOIUrl":"https://doi.org/10.1177/1043454219859235","url":null,"abstract":"Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children’s diagnoses and treatment, the family’s quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children’s feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child’s disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2019-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219859235","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48770556","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}

引用次数: 16

Perspectives of Childhood Cancer Symptom-Related Distress: Results of the State of the Science Survey. 儿童癌症症状相关痛苦的前景：科学状况调查结果

IF 1.9 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219858608

Micah A Skeens, Patsy Cullen, Joe Stanek, Marilyn Hockenberry

{"title":"Perspectives of Childhood Cancer Symptom-Related Distress: Results of the State of the Science Survey.","authors":"Micah A Skeens, Patsy Cullen, Joe Stanek, Marilyn Hockenberry","doi":"10.1177/1043454219858608","DOIUrl":"10.1177/1043454219858608","url":null,"abstract":"Management of symptom-related distress is an important area of pediatric oncology nursing. Participants who attended the Children's Oncology Group (COG) State of the Science Symposium on symptom distress completed an anonymous survey. The purpose was to explore participant perceptions of symptom distress experienced by children receiving cancer treatment on clinical trials, determine how symptom distress is currently assessed at COG institutions, and to identify what interventions are used to reduce symptom distress for these children. Among the 90 symposium attendees, 72% completed the survey, the majority (92%) of whom were nurses. The five most distressing symptoms in children with cancer enrolled on clinical trials identified by survey respondents were nausea/vomiting, fatigue, pain, anxiety, and sleep disturbances. Results from our survey also suggest that symptom distress may differ by disease type. For example, symptoms associated with leukemia/lymphoma included steroid side effects, procedural pain, and neuropathy. The majority of respondents (90%) also reported that symptoms go unrecognized by health care providers. The most commonly described unrecognized symptoms were behavioral (i.e., sadness, anxiety, fear, depression, and emotional needs; 45%) and fatigue (19%). Key focus areas reported by respondents included informal and inconsistent symptom assessment, the need for uniform measurement tools, and improved documentation of symptom-related distress. Management of symptom-related distress is an important aspect of pediatric oncology nursing. Further exploration of symptom distress experienced by children with specific types of cancers, and the development of standardized symptom assessment processes, will provide a foundation for developing future interventions aimed at alleviating symptom-related distress.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2019-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41704944","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}

引用次数: 0

Symptom Biomarkers for Children Receiving Treatment for Cancer: State of the Science. 癌症治疗儿童的症状生物标志物：科学现状

IF 1.9 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219859233

Belinda N Mandrell, Janice S Withycombe

引用次数: 0

Symptoms in Children Receiving Treatment for Cancer-Part I: Fatigue, Sleep Disturbance, and Nausea/Vomiting. 接受癌症治疗的儿童的症状——第一部分：疲劳、睡眠障碍和恶心/呕吐

IF 1.9 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219849576

Mary C Hooke, Lauri A Linder

{"title":"Symptoms in Children Receiving Treatment for Cancer-Part I: Fatigue, Sleep Disturbance, and Nausea/Vomiting.","authors":"Mary C Hooke, Lauri A Linder","doi":"10.1177/1043454219849576","DOIUrl":"10.1177/1043454219849576","url":null,"abstract":"Children and adolescents with cancer often undergo intensive chemotherapy treatment to obtain remission and long-term survival. The pursuit of successful treatment outcomes may lead to high levels of symptom distress related to treatment side effects and toxicities. The Children's Oncology Group Nursing Discipline held a State of the Science Symposium \"Symptom Assessment During Childhood Cancer Treatment\" in 2018 that included reviews of evidence regarding key symptoms. The purpose of this review is to summarize and synthesize the evidence presented about the prevalence, relationships, trajectories, and associated biomarkers of selected symptoms experienced by children and adolescents during cancer treatment. Five symptoms were selected, with the focus on fatigue, sleep disturbance, and nausea/vomiting and included in Part I of the review. Using Ovid-Medline, studies published between 2008 and 2018 that focused on these specific symptoms during active chemotherapy treatment were selected. Fatigue interferes with normal developmental activities and is associated with sleep disturbances, and its pattern changes within a cycle of chemotherapy as well as across the treatment trajectory. Sleep is disrupted by the hospital environment, treatment medications, and changes in normal childhood and schedules. Disturbances of sleep persist during treatment, preventing recovery from poor quality sleep. Although pharmacologic interventions have advanced for treatment of nausea and vomiting, children and adolescents continue to struggle with this symptom. Its trajectory changes with the intensity of treatment, and over half of the patients report that they experience nausea and/or vomiting. Future research is needed to advance identification of biologic risk factors for symptoms and test effectiveness of symptom-related interventions.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2019-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197223/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45131317","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}

引用次数: 0

Symptom Assessment During Childhood Cancer Treatment. 儿童癌症治疗期间的症状评估

IF 1.9 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219852611

Marilyn Hockenberry, Wendy Landier

引用次数: 0

Consensus Recommendations From the Children’s Oncology Group Nursing Discipline’s State of the Science Symposium: Symptom Assessment During Childhood Cancer Treatment 来自儿童肿瘤组护理学科的科学状况研讨会的共识建议:儿童癌症治疗期间的症状评估

IF 1.7 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219854983

Janice S. Withycombe, M. Haugen, Sue Zupanec, C. F. Macpherson, W. Landier

{"title":"Consensus Recommendations From the Children’s Oncology Group Nursing Discipline’s State of the Science Symposium: Symptom Assessment During Childhood Cancer Treatment","authors":"Janice S. Withycombe, M. Haugen, Sue Zupanec, C. F. Macpherson, W. Landier","doi":"10.1177/1043454219854983","DOIUrl":"https://doi.org/10.1177/1043454219854983","url":null,"abstract":"Background: Recognizing and addressing illness-related distress has long been a priority for pediatric oncology nurses and the Children’s Oncology Group. Although symptoms are known to be highly prevalent during treatment for childhood cancer, there is currently no guidance for how often symptoms should be assessed, which symptoms should be prioritized for assessment, and how the data should be collected. Methods: The Nursing Discipline, within Children’s Oncology Group, hosted a one-day Interprofessional seminar titled “Symptom Assessment During Childhood Cancer Treatment: State of the Science Symposium.” Following the symposium, an expert panel was assembled to review all available evidence, including information presented and collected during the symposium. Consensus-building discussions were held to identify common themes and to produce recommendations for clinical practice. Results: Four recommendations emerged including (1) the identification of priority “core” symptoms for assessment; (2) inclusion of the child’s voice through self-report, when possible; (3) consistent documentation and communication of symptom assessment results; and (4) implementation of patient/family education related to symptoms. Discussion: Symptom recognition, through appropriate assessment, is the first step in symptom management. The goal for developing and sharing these recommendations is to promote consistent and comparable clinical practice across institutions in regard to symptom assessment during childhood cancer therapy. Integration of these recommendations will set the stage for future studies related to the frequency of symptoms across disease groups, projection of anticipated symptom trajectories, development of evidence-based teaching tools for common symptoms, and evaluation of patient outcomes with enhanced symptom assessment and management.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2019-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219854983","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47528867","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}

引用次数: 17

Symptoms in Children Receiving Treatment for Cancer-Part II: Pain, Sadness, and Symptom Clusters. 接受癌症治疗的儿童的症状——第二部分：疼痛、悲伤和症状群

IF 1.9 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-07-01 DOI: 10.1177/1043454219849578

Lauri A Linder, Mary C Hooke

{"title":"Symptoms in Children Receiving Treatment for Cancer-Part II: Pain, Sadness, and Symptom Clusters.","authors":"Lauri A Linder, Mary C Hooke","doi":"10.1177/1043454219849578","DOIUrl":"10.1177/1043454219849578","url":null,"abstract":"Children and adolescents receiving treatment for cancer experience multiple symptoms as a consequence of their disease and its treatment that interfere with the child's quality of life. Understanding of symptom assessment in children with cancer is foundational to the work of the Children's Oncology Group Nursing Discipline, whose research aims are to address knowledge gaps including understanding illness-related distress. This article is the second of a two-part summary of current evidence addressing the assessment of symptoms frequently reported by children and adolescents receiving treatment for cancer. Studies reporting assessment of pain, sadness, and symptom clusters published between January 2008 and May 2018 were included. Forty-three publications addressed pain. Pain was highly prevalent and distressing, varied in its trajectory across a cycle of chemotherapy and across multiple cycles of treatment, and correlated with biomarkers associated with the pain response. Consequences of pain were poorer functional status and emotional health. Twenty publications addressed sadness. Sadness was the most prevalent psychosocial symptom. Its prevalence decreased over the course of treatment and over a cycle of chemotherapy. Persistent sadness was of greater severity and distress. Eight publications addressed symptom clusters. These studies identified both groups of co-occurring symptoms and groups of patients with common symptom profiles. This two-article series provides evidence for the distressing nature of symptoms among children receiving cancer treatment. Efforts to support clinicians in routine symptom assessment are needed. Additional research directed at alleviating symptoms and building resilience among the child experiencing symptoms is needed.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2019-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197222/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41936637","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}

引用次数: 0

Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer? 参与在线研究检查临终经历:对因儿童癌症而失去亲人的父母是有益的，是负担，还是两者兼而有之?

IF 1.7 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-05-01 DOI: 10.1177/1043454219836963

Julia Tager, Haven Battles, Sima Zadeh Bedoya, Cynthia A Gerhardt, Tammi Young-Saleme, Lori Wiener

{"title":"Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?","authors":"Julia Tager, Haven Battles, Sima Zadeh Bedoya, Cynthia A Gerhardt, Tammi Young-Saleme, Lori Wiener","doi":"10.1177/1043454219836963","DOIUrl":"https://doi.org/10.1177/1043454219836963","url":null,"abstract":"It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least \"a little benefit\" and half reported at least \"a little burden\" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2019-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219836963","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37145224","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}

引用次数: 11

Social Support to Reduce Uncertainty in Childhood Cancer in South Texas: A Case Study. 社会支持减少南德克萨斯州儿童癌症的不确定性:一个案例研究。

IF 1.7 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-05-01 Epub Date: 2019-04-01 DOI: 10.1177/1043454219835450

M Danielle Gunter, Gloria Duke

{"title":"Social Support to Reduce Uncertainty in Childhood Cancer in South Texas: A Case Study.","authors":"M Danielle Gunter, Gloria Duke","doi":"10.1177/1043454219835450","DOIUrl":"https://doi.org/10.1177/1043454219835450","url":null,"abstract":"Purpose: To determine if supportive measures are found to be most helpful and feasible for families of children with cancer by obtaining in-depth perspectives of uncertainty and adaptation.Hypotheses: Traditional methods of psychosocial support do not meet the needs of parents and families dealing with cancer. Participants prefer more informal meetings and gatherings that are more social in nature.Method: A descriptive single embedded case study was used to study uncertainty and social support for families with children treated at a pediatric hematology/oncology department in south Texas. The sample included members of the health care team in a pediatric cancer/bone marrow transplant unit and parents of children diagnosed with cancer. Data were gathered through audio-recorded interviews.Data analysis: Data were transcribed and analyzed through thematic content and pattern matching using computer software.Results: Four themes were identified: meaning of uncertainty in parents and members of the health care team, facilitators of parental adaptation, education and psychosocial support, and patient/family obstacles hindering successful adaptation. These demonstrated aspects of care interventions, clarifying what uncertainty means and how it affects the ability of parents to adapt to life with pediatric cancer, perceptions regarding the helpfulness of education and support interventions or lack thereof, and what internal and external obstacles hinder the family's adaptation.Implications for practice: Improving patient education through individualization and delivery time frame as well as providing opportunities for informal sharing and community building are key to reducing uncertainty and improving family adaptation to life with childhood cancer.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2019-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219835450","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37104293","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}

引用次数: 8

Composing Sexuality in the Midst of Adolescent Cancer. 青少年癌症中的性行为。

IF 1.7 3区医学

Journal of Pediatric Oncology Nursing Pub Date : 2019-05-01 Epub Date: 2019-03-22 DOI: 10.1177/1043454219836961

Andrew Estefan, Nancy J Moules, Catherine M Laing

{"title":"Composing Sexuality in the Midst of Adolescent Cancer.","authors":"Andrew Estefan, Nancy J Moules, Catherine M Laing","doi":"10.1177/1043454219836961","DOIUrl":"https://doi.org/10.1177/1043454219836961","url":null,"abstract":"A cancer diagnosis heralds the onset of significant life changes. The various experiences of diagnosis, treatment, and recovery from cancer during adolescence and young adulthood are complex and disruptive. Emphasis on treatment and recovery often overshadows other social and developmental imperatives for adolescents and young adults. Acknowledging, exploring, and crafting one's own sexual identity is a significant milestone achieved during this time, and it is one that is interrupted by the arrival and treatment of cancer. There is value in understanding how adolescents and young adults compose sexuality amid cancer experiences, and how this composition contributes to their ongoing stream of life experiences after recovery. As part of a larger study of sexuality and adolescent cancer, we undertook a narrative inquiry with Anna and Mark, two young adults who experienced cancer during adolescence. Over 14 months, we met with Anna and Mark, drawing on different narrative inquiry approaches to explore their past and ongoing experiences and to build negotiated stories of those experiences. We explored resonant threads between the stories, which help show the depth and complexity of sexuality as it is experienced in the midst of and after cancer. Two resonant threads are discussed: inward and outward looking, and sexuality and survival. The inquiry reveals the richness of self-composition amid competing stories of cancer treatment, disruptions to family and socialization, survivorship, what it means to be a young man or woman in the world, and the sense of a developing sexual self.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2019-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219836961","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37081427","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}

引用次数: 7