Journal of Pediatric Hematology-Oncology Nursing最新文献

{"title":"Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.","authors":"Christina M Amaro,&nbsp;Melissa A Alderfer,&nbsp;Cynthia A Gerhardt,&nbsp;Sarah E Wawrzynski,&nbsp;Melanie Goldish,&nbsp;Kristin A Long","doi":"10.1177/27527530221121727","DOIUrl":"10.1177/27527530221121727","url":null,"abstract":"<p><p><b>Background:</b> Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. <b>Methods:</b> SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. <b>Results:</b> SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. <b>Discussion:</b> Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"40 1","pages":"34-42"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9900248/pdf/10.1177_27527530221121727.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10818703","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":"Oral Mercaptopurine Adherence in Pediatric Acute Lymphoblastic Leukemia: A Survey Study From the Dana-Farber Cancer Institute Acute Lymphoblastic Leukemia Consortium.","authors":"Justine M Kahn,&nbsp;Kristen Stevenson,&nbsp;Melissa Beauchemin,&nbsp;Victoria B Koch,&nbsp;Peter D Cole,&nbsp;Jennifer J G Welch,&nbsp;Elizabeth Gage-Bouchard,&nbsp;Cecile Karsenty,&nbsp;Lewis B Silverman,&nbsp;Kara M Kelly,&nbsp;Kira Bona","doi":"10.1177/27527530221122685","DOIUrl":"10.1177/27527530221122685","url":null,"abstract":"<p><p><b>Background:</b> Oral chemotherapy nonadherence is a challenge in clinical oncology. During therapy for acute lymphoblastic leukemia (ALL), poor adherence to 6-mercaptopurine (6MP) increases relapse risk. Clinically significant nonadherence is reported in 30% of children treated for ALL on Children's Oncology Group (COG) trials. Whether nonadherence rates vary across regimens with different treatment schedules and modes of administration is unknown. <b>Methods:</b> We conducted an exploratory, cross-sectional survey study on parents of children (1-18 years) receiving continuation therapy on, or as per Dana-Farber Cancer Institute (DFCI) ALL Consortium Protocol 11-001. Treatment required weekly visits to the clinic and 14 days of oral 6MP every 3 weeks. Survey assessed self-reported sociodemographics, medication-taking, chemotherapy comprehension, and 6MP adherence; adherence survey items were developed from published surveys. Patients were grouped as nonadherent if they endorsed missing one 6MP dose during the last cycle, or more than one dose during prior cycles, for nonmedical reasons. <b>Results:</b> Sixty-two families completed the surveys, all of whom had evaluable adherence data. In total, 25% of patients met the study definition of nonadherence. Twenty-three percent reported that it was \"not easy\" to follow administration guidelines around the dairy intake and 57% requested more teaching and educational resources. <b>Conclusion:</b> Self-reported nonadherence to oral 6MP in the DFCI ALL Consortium is high, with rates similar to those observed in the COG. This suggests that the additional contact during weekly infusions on the DFCI is insufficient to address barriers affecting oral chemotherapy adherence.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"40 1","pages":"17-23"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9982234/pdf/10.1177_27527530221122685.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10835309","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":"Pilot Randomized Trial of a Three Times Weekly Heparin Flushing Intervention in Children, Adolescents, and Young Adults With Cancer With Tunneled Central Venous Catheters.","authors":"Kathleen Adlard,&nbsp;Carol Brown,&nbsp;Samantha Hayward,&nbsp;Jennifer Barrows,&nbsp;Lori MacLean","doi":"10.1177/27527530221090479","DOIUrl":"https://doi.org/10.1177/27527530221090479","url":null,"abstract":"<p><p><b>Background:</b> Children and adolescents with cancer often undergo aggressive treatment and receive supportive care requiring a long-term tunneled central venous catheter (TCVC). Regular flushing promotes TCVC patency when not in use (i.e., noninfusing). However, TCVC flushing guidelines and the current practice of daily flushing are not based on high-quality evidence. Few studies have compared the effect of less frequent flushing on TCVC patency. The purpose of this study was to evaluate the feasibility of a three times weekly heparin flushing intervention, as compared to daily heparin flushing, in children and adolescents and young adults (AYAs) with noninfusing TCVCs. <b>Methods:</b> Twenty children and AYAs were randomized to one of two groups, standard of care (SOC) (i.e., daily heparin flushing) or intervention (three times weekly heparin flushing) for 8 weeks. Feasibility data (recruitment, retention, acceptability, TCVC patency, and complications) were analyzed descriptively. <b>Results:</b> Twenty of 22 eligible patients were enrolled in the study (90% recruitment rate). Four participants discontinued the study early due to TCVC removal (20% attrition rate). One participant in each group had their TCVC removed due to a central line-associated bloodstream infection, one SOC group participant had their TCVC removed due to damage, and one intervention group participant had their TCVC removed due to discontinuation of treatment. No participants were withdrawn for safety concerns or because they did not find the protocol acceptable. <b>Conclusions:</b> It is feasible to conduct a large-scale randomized controlled trial to investigate a three times weekly heparin flushing intervention in children and AYAs with TCVCs.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"40 1","pages":"24-33"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10594102","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":"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}