Journal of Pediatric Hematology-Oncology Nursing最新文献

{"title":"Recommendations for Providing Medication Adherence Support After Pediatric Hematopoietic Stem Cell Transplant: Caregivers' Lived Experience.","authors":"Marie L Chardon,&nbsp;Kimberly L Klages,&nbsp;Naomi E Joffe,&nbsp;Ahna L H Pai","doi":"10.1177/27527530221121723","DOIUrl":"10.1177/27527530221121723","url":null,"abstract":"<p><p><b>Background.</b> Medication adherence is challenging after pediatric hematopoietic stem cell transplant (HCT), particularly after hospital discharge. Post-HCT medication adherence is important to manage morbidity and mortality risk. Designing interventions that are effective and acceptable to caregivers is key to improving post-HCT medication adherence. This study aimed to characterize caregiver preferences about medication adherence support from their child's medical team. <b>Methods.</b> Twenty-nine caregivers of children who received an HCT completed semi-structured qualitative interviews about their experience with, and recommendations for improving, medication adherence support provided by the medical team. Twenty-two caregivers also completed a card sort task to clarify the content of received support and caregiver recommendations for future HCT families. <b>Results.</b> Thematic analysis revealed eight themes grouped into two categories: <i>Communication Is Key</i> and <i>Practical Medication Adherence Support</i>. Caregivers emphasized the importance of communication in helping them manage their child's outpatient medications and provided suggestions to further strengthen communication. The types of practical medication adherence support used varied across caregivers highlighting the importance of tailoring adherence support to each family's needs. Caregivers also identified all the domains as potentially helpful for other families. <b>Discussion.</b> Findings suggest that caregivers prefer that efforts to improve outpatient medication adherence post-HCT prioritize the medical team initiating frequent, clear, and open communication about medications, and provide educational materials on adherence (e.g., handouts). Results also indicate that practical medication adherence supports should be offered based on family preferences but that families may particularly appreciate tips about addressing medication challenges based on other caregivers' lived experience.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"40 1","pages":"5-16"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9982233/pdf/10.1177_27527530221121723.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9078747","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An Integrative Review: The Evolution of Provider Knowledge, Attitudes, Perceptions and Perceived Barriers to Caring for Patients with Sickle Cell Disease 1970-Now.","authors":"Jessie Reich,&nbsp;Mary Ann Cantrell,&nbsp;Suzanne C Smeltzer","doi":"10.1177/27527530221090179","DOIUrl":"https://doi.org/10.1177/27527530221090179","url":null,"abstract":"<p><p>Approximately 100,000 Americans have sickle cell disease (SCD). In the USA, the majority of patients with SCD are of African descent. Due to persistent racial and ethnic disparities in healthcare in the USA, patients with SCD experience disproportionately more health inequities because of providers' implicit biases regarding patient race. Lack of access to health insurance, lack of transportation to healthcare providers, and inadequate provider knowledge contribute to the morbidity and mortality of patients with SCD. The purpose of this integrative review was to analyze and synthesize the literature on providers' knowledge, perceptions, beliefs, and attitudes toward patients with SCD. A modified (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) method was used to conduct a comprehensive review of the literature yielding 31 publications included in this review. Three connected, yet distinct areas of focus were identified: (1) providers' knowledge, attitudes, and perceptions of patients with SCD; (2) providers' perceived or true barriers to caring for patients with SCD; and (3) interventions to improve providers' attitudes, perceptions, and care of patients with SCD. In each area of focus, research has evolved over time. Also included in this integrative review is a synthesis of measurement instruments used to assess provider knowledge, attitudes, perceptions, and perceived and true barriers to caring for patients with SCD. Adolescents with SCD who are transitioning from pediatric to adult care are at a particularly high risk for morbidity and mortality, so this review focused on the many opportunities that exist to advance the healthcare for young adults with SCD to improve patient outcomes later in life. This includes improving providers' knowledge, perceptions, beliefs, and attitudes, and lessening the real or perceived barriers to care for patients with SCD.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"40 1","pages":"43-64"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10594132","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors.","authors":"Paula J Belson, Jo-Ann Eastwood, Mary-Lynn Brecht, Jonathan W Kim, Ron D Hays, Nancy A Pike","doi":"10.1177/27527530221073766","DOIUrl":"10.1177/27527530221073766","url":null,"abstract":"<p><p><b>Background:</b> Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. <b>Purpose:</b> To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. <b>Methods:</b> Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. <b>Results:</b> RB survivors reported similar HRQOL compared to controls. Physical function (<i>p </i>< .001), social support (<i>p</i> = .013), and self-esteem (<i>p</i> = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. <b>Conclusion:</b> Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"39 6","pages":"342-357"},"PeriodicalIF":1.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9807776/pdf/10.1177_27527530221073766.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9951937","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"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":"39 5","pages":"277-289"},"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}

{"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":"39 5","pages":"290-303"},"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}

{"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":"39 4","pages":"209-220"},"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}

{"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":"39 4","pages":"264-272"},"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}

{"title":"A Prospective Evaluation of Fatigue in Pediatric Brain Tumor Patients Treated With Radiation Therapy","authors":"Kellen C. Gandy, Tiffany Chambers, Kimberly P Raghubar, M. Fatih Okcu, M. Chintagumpala, O. Taylor, A. Mahajan, Lisa S. Kahalley, W. Chan, D. Grosshans, Austin L. Brown, M. Douglas Ris","doi":"10.1177/275275302110560011068754","DOIUrl":"https://doi.org/10.1177/275275302110560011068754","url":null,"abstract":"Background: Fatigue is a well-established consequence of cranial radiotherapy in survivors of pediatric brain tumor, but less is known about acute fatigue during radiotherapy treatment. This study aimed to longitudinally evaluate fatigue in newly diagnosed pediatric patients with brain tumors during treatment. Methods: Primary caregivers of pediatric patients with brain tumors completed the proxy-reported Parent Fatigue Scale assessments prior to radiotherapy and weekly during radiotherapy treatment. The association between clinical factors and fatigue at each assessment was evaluated with multiple linear regressions. A comparison of fatigue between radiation modalities was also analyzed. Results: A total of 33 caregivers completed pre-radiation fatigue assessments, with 29 reporting fatigue during radiotherapy. Patients were aged 3 to 16 years (M = 8.32) at diagnosis and diagnosed with medulloblastoma (n = 23), primitive neuroectodermal tumor (n = 2), ependymoma (n = 1), germ cell tumor (n = 1), pineoblastoma (n = 1), atypical teratoid rhabdoid (n = 1), and other unspecific tumors (n = 3). Moderate-to-severe fatigue was reported for the majority of patients (31/33; 94%) during treatment. Craniospinal irradiation dose was the only significant predictor of fatigue (p < .05), but this association was restricted to the first week of therapy and was attenuated by therapy completion. Discussion: Although fatigue is often considered a long-term consequence of cranial radiotherapy, this pilot study demonstrates that moderate-to-severe fatigue is pervasive prior to radiotherapy and persists throughout treatment in pediatric patients with brain tumors, regardless of radiation modality or clinical factors. Additional research is warranted to establish a link between acute and long-term fatigue and develop interventions to mitigate this adverse outcome.","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"39 1","pages":"358 - 365"},"PeriodicalIF":0.0,"publicationDate":"2022-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45718731","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Effects of Acupressure in the Prevention of Nausea and Vomiting Related to Chemotherapy in Children: A Randomized Double-Blinded Placebo-Controlled Study","authors":"Duygu Altuntaş, A. Dalgic","doi":"10.1177/27527530221092324","DOIUrl":"https://doi.org/10.1177/27527530221092324","url":null,"abstract":"Background: Acupressure is known to be a nursing intervention used to prevent chemotherapy-induced nausea and vomiting in children. Methods: This study was conducted to evaluate and compare the effectiveness of manual and wristband acupressure in the prevention of chemotherapy-induced nausea and vomiting in children. This double-blinded and placebo-controlled study was conducted with 44 children aged between 5 and 18 years receiving chemotherapy in a university hospital's pediatric oncology clinic. Children were randomized into groups using a 2 × 2 factorial design: (a) The child who was given manual acupressure before the first chemotherapy was given placebo manual acupressure before the next chemotherapy; (b) the same child who was administered wristband acupressure before the first chemotherapy was administered placebo wristband acupressure before the next chemotherapy. After all interventions, the severity and number of episodes of nausea and vomiting and additional antiemetic needs in the children were monitored for 24 h. Results: In both groups, the severity and number of nausea and vomiting were lower according to their own placebo groups. Manual and wristband acupressure were effective in reducing the severity and number of nausea and vomiting, but manual acupressure was more effective in reducing the severity and number of nausea and vomiting in comparison to wristband acupressure (p < .05). No statistically significant difference was found between the groups regarding additional antiemetic drug use. Discussion: In this study, manual and wristband acupressure were determined to be effective in reducing the severity and number of nausea and vomiting related to chemotherapy.","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"39 1","pages":"386 - 395"},"PeriodicalIF":0.0,"publicationDate":"2022-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47744852","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Considerations in Oncology and Palliative Care Research During COVID-19.","authors":"Terrah Foster Akard, Mary Jo Gilmer, Verna L Hendricks-Ferguson","doi":"10.1177/27527530221073298","DOIUrl":"10.1177/27527530221073298","url":null,"abstract":"<p><p><b>Background:</b> Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. <b>Methods</b> Review of research case examples. <b>Results</b> Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. <b>Discussion</b> Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"1 1","pages":"178-184"},"PeriodicalIF":1.0,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9022959/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42188838","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}