Jenny Davies, Moira O'Connor, Georgia K B Halkett, Lauren Kelada, Nicholas G Gottardo
{"title":"\"I Don't Get to Play With My Mum Anymore\": Experiences of Siblings Aged 8-12 of Children With Cancer: A Qualitative Study.","authors":"Jenny Davies, Moira O'Connor, Georgia K B Halkett, Lauren Kelada, Nicholas G Gottardo","doi":"10.1177/27527530241267324","DOIUrl":"10.1177/27527530241267324","url":null,"abstract":"<p><p><b>Background:</b> Siblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages. <b>Aim:</b> To explore the experience of siblings aged 8-12 years when their brother or sister is diagnosed with cancer. <b>Method:</b> A qualitative design incorporating phenomenology as the theoretical framework was used. Participants were recruited from across Australia via notices on social media sites and by the distribution of flyers. We used thematic analysis to analyze the data. Data were collected via semistructured interviews conducted either in person or online. <b>Findings:</b> A total of 13 siblings (7 boys and 6 girls) aged between 8 and 12 years (<i>M</i> = 9.8, <i>SD</i> = 1.6) were interviewed. Seven main themes were identified. These were \"It was really hard\": Reactions to the cancer diagnosis; \"I'm really angry\": Emotional and Physical Responses to siblings' treatment; \"I pretend teddy is real\": Play as an outlet; \"It was very lonely\": Missing their siblings; \"I missed out on a lot of fun\": Disruption of activities: School, sports, playdates, and parties; Change and Transition and \"Making a difficult situation worse\": COVID-19 Pandemic. <b>Discussion:</b> Findings extend the current understanding showing that younger siblings' developmental and cognitive skills impact their experiences of childhood cancer. Younger siblings outlined the many losses they experienced which demonstrated a need for a comprehensive and tailored program to support young siblings aged under 12 of children with cancer.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"265-275"},"PeriodicalIF":1.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141917553","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}
Rachel Hamilton, Cynthia Nguyen, Denise Mills, Jennifer N Stinson, Lindsey A Jibb
{"title":"Facilitators and Barriers to the Implementation of a Digital Pain Assessment Tool in Pediatric Oncology Practice: A Qualitative Evaluation of a Quality Improvement Project.","authors":"Rachel Hamilton, Cynthia Nguyen, Denise Mills, Jennifer N Stinson, Lindsey A Jibb","doi":"10.1177/27527530241242742","DOIUrl":"10.1177/27527530241242742","url":null,"abstract":"<p><p><b>Background:</b> Most children and adolescents with cancer experience acute pain, and many experience longer-lasting chronic pain, negatively impacting health-related quality of life and resulting in long-term morbidity. Digital apps can aid in enhancing pain assessment and management by offering children and adolescents with cancer an accessible tool to describe their pain as a multifaceted biopsychosocial construct. Pain Squad is a useable, acceptable, and psychometrically sound multidimensional cancer pain assessment app for children and adolescents with cancer. This project aimed to evaluate the capacity to implement Pain Squad into routine pediatric oncology practice. <b>Method:</b> Nurse champions were asked to prescribe the Pain Squad app to patients over a 6-month implementation period. After the implementation period, we conducted audiorecorded, semistructured interviews with nurse champions to investigate the facilitators and barriers related to nurses' experiences with implementing Pain Squad. <b>Results:</b> The facilitators and barriers to Pain Squad implementation were organized into four overarching Consolidated Framework for Implementation Research (CFIR)-related themes: (a) characteristics of the Pain Squad app; (b) clinic setting and its context; (c) nurse implementation champions; and (d) the process of implementing Pain Squad into clinical practice. <b>Conclusions:</b> Interviewed nurses believed Pain Squad had the potential to improve child cancer pain care, but barriers to everyday use were evident, described in relation to the internal setting, especially the lack of compatibility between app prescription and current nurse workflows. The use of CFIR to map identified implementation facilitators and barriers can formally support the recognition of factors that may boost the chances of successful uptake.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"283-291"},"PeriodicalIF":1.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141976808","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}
Anne Ingalls Gillespie,Jacqueline Jones,Rachel Johnson-Koenke,Mary Jo Gilmer,Madalynn Neu
{"title":"Influences of Animal-Assisted Intervention With Canine and Feline Pen Pals on Experiences of Living With Cancer and Blood Disorders in Children and Adolescents.","authors":"Anne Ingalls Gillespie,Jacqueline Jones,Rachel Johnson-Koenke,Mary Jo Gilmer,Madalynn Neu","doi":"10.1177/27527530241246249","DOIUrl":"https://doi.org/10.1177/27527530241246249","url":null,"abstract":"Background: Animal-assisted intervention (AAI) involving live visits with canines shows strong promise to improve quality of life (QOL) in hospitalized youth with cancer or blood disorders. The emerging field of virtual AAI allows access to AAI regardless of setting and extends to children at home. Youth and Pet Survivors™ (YAPS) is a novel form of virtual AAI with dog and cat pen pals who share a diagnosis of cancer or serious illness. Little is known about how exchanging letters with animals with a shared diagnosis influences perceived QOL, and how the human-animal bond (HAB) is expressed in letter narratives. Method: A thematic narrative analysis approach was used to analyze a secondary dataset consisting of letters and interviews from children in YAPS. The research team designed a conceptual framework to guide the analysis, integrating concepts of perceived QOL, the HAB, and emotional social support. Results: Collectively, the letter and interview texts illustrated cocreated stories of the HAB. Themes included the virtual HAB as a mirror, constructing identity in the context of the HAB, expressions of the mutuality of the HAB, happiness with having a pen pal, illness story, and connection to normalcy. Answers to research questions operationalize the influence of virtual AAI. Discussion: Having an animal pen pal improved perceived QOL and was a potent source of emotional social support across the illness trajectory, supporting YAPS as a nurse-led intervention for facilitating adjustment to illness. This study adds a conceptual framework and scientific evidence to the emerging field of virtual AAI.","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"6 1","pages":"252-264"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142187248","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":"Shooting for the STARS: Implementing an Evidence-Based Program to Meet the End of Treatment Needs of Childhood Cancer Survivors and Their Families.","authors":"Mary Conway Keller,Lauren Ayr-Volta,Elizabeth Marconi,Andrew Needham,Kelly Foy,Leigh Hart,Elizabeth Holden,Amirul Anuar,Karina Engelke,Katherine Hinderer","doi":"10.1177/27527530241245636","DOIUrl":"https://doi.org/10.1177/27527530241245636","url":null,"abstract":"Background: The end of treatment (EOT) is a significant time point along the childhood cancer treatment-survivorship continuum, and is recognized as a time when childhood cancer survivors (CCS) and their families experience significant vulnerability and stress. There is a call by families and healthcare professionals alike for standardized, comprehensive EOT services to successfully navigate through this transition period and better cope with posttreatment medical, physical, and social-emotional issues. Method: A multidisciplinary team of pediatric oncology health care professionals developed and implemented a two-session psychoeducational program to address these EOT needs. To evaluate the Shooting for the STARS (Survivors Tackling All Roadblocks Successfully) EOT Transition Program, a pretest-posttest repeated measures design was utilized. A convenience sample of 47 parents/caregivers and 29 CCS completed surveys before, during, and after the EOT services were received. Analysis of relationships and changes over time was conducted using Spearman-ranked correlations and Friedman tests, a nonparametric repeated measures analysis of variance. Results: All respondents reported program satisfaction, with 94.7% feeling somewhat or very prepared for ending treatment. Participants' distress levels tended to decrease over time. Parent/caregiver-reported levels of CCS' anxiety, fatigue, pain interference, and physical mobility significantly improved over the time period during which families participated in the Shooting for the STARS Program. Discussion: This nurse-led, evidence-based program was determined to be feasible and acceptable. It may contribute to improved health-related quality of life and decrease distress over time.","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":"5 1","pages":"240-251"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142187287","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}
Michelle Hallam, Amber Pruett, Charmaine Biega, Haley Miller, Tami Davis, Linda Casto, Amy L Dunn, Vilmarie Rodriguez
{"title":"Improving 1-Deamino-8-D-Arginine Vasopressin (DDAVP) Challenges in Pediatric/Young Adult Patients With Bleeding Disorders: A Quality Improvement Study.","authors":"Michelle Hallam, Amber Pruett, Charmaine Biega, Haley Miller, Tami Davis, Linda Casto, Amy L Dunn, Vilmarie Rodriguez","doi":"10.1177/27527530241246260","DOIUrl":"10.1177/27527530241246260","url":null,"abstract":"<p><p><b>Background:</b> Desmopressin (1-deamino-8-D-arginine vasopressin [DDAVP]) has demonstrated efficacy as a treatment option for patients with inherited bleeding disorders. Because of individuals' variable response to the medication, it is recommended to complete a challenge to document appropriate hemostatic response to the medication before recommending its use prior to surgical procedures or treatment of bleeding symptoms. The project aimed to reduce the errors in hemostatic response assessments for patients with bleeding disorders undergoing a DDAVP challenge (process outcome), particularly timing and number of blood samples drawn, from an error rate baseline of 36% to 0% by December 2021 and sustained for one year. <b>Method:</b> Plan-Do-Study-Act methodology was employed for this qualitative improvement initiative. Interventions designed and implemented included: an order set with medication doses and corresponding laboratory orders as clinically indicated for the bleeding disorder indication, clinical procedure guidelines for infusion nurses to follow, hemostasis nurse coordination of appointments with patients, and family education. <b>Results:</b> Baseline data on 22 patients who completed a DDAVP challenge demonstrated a 36% error rate not involving doses of medication administered. Errors encountered included improper timing of laboratory draw after DDAVP administration, incomplete laboratory evaluation, laboratory results displayed incorrectly due to testing orders released at once instead of in a sequential manner. These interventions resulted in a reduction of DDAVP challenge errors to 0% that were sustained for one year. <b>Conclusion:</b> Improvement in procedural medication administration and appropriate laboratory evaluation of patients undergoing a DDAVP challenge leads to a complete and reliable assessment of hemostatic response following medication administration.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"292-297"},"PeriodicalIF":1.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141907816","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":"\"They Did Not Understand\": Exploring Adult Survivors of Childhood Cancer's Memories of Their Experiences With Peers.","authors":"Tori Hinton, Sherwood Burns-Nader","doi":"10.1177/27527530241245657","DOIUrl":"10.1177/27527530241245657","url":null,"abstract":"<p><p><b>Background:</b> Peer relationships are impacted by the diagnosis of childhood cancer. Children with cancer can feel isolation, such as bullying and lack of engagement, from their peers. As the rates of survival increase, one way to further learn about the experiences of childhood cancer is to reflect on the memories of adult survivors. This study examines adult survivors of childhood cancer's memories of their experiences with peers during their cancer. <b>Method:</b> Twenty-seven adult survivors (15 male, 12 female) of childhood cancer were recruited from Amazon Mechanical Turk, a crowdsourcing marketplace for survey distribution, and surveyed about their experiences with peers during childhood cancer. Using inductive thematic analysis, open-ended survey questions were analyzed. <b>Results:</b> Five main themes emerged, including age, perceptions of cancer, acts of kindness, peer responses, and limited peer engagement. Participants' memories included peers' lack of understanding about their diagnosis, prognosis, and treatment, positive and negative responses to their cancer diagnosis, acts of services and gifts from peers, and feelings of isolation during the cancer experience. <b>Discussion:</b> In the current study, adult survivors of childhood cancer had specific memories about how cancer impacted peer relationships. Such findings contribute to the evidence that children with cancer could benefit from psychosocial interventions, including education to peers about the diagnosis and the impact of diagnosis on peer relationships, peer engagement activities, and peer support groups.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"276-282"},"PeriodicalIF":1.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142018893","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":"Fertility Preservation in Individuals With Cancer: A Joint Position Statement From APHON, CANO/ACIO, and ONS.","authors":"","doi":"10.1177/27527530241261936","DOIUrl":"10.1177/27527530241261936","url":null,"abstract":"","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"237-239"},"PeriodicalIF":1.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142156158","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}
Antonia P Leavitt, Karen H Albritton, Mary Cazzell, Eleanor Stevenson
{"title":"Expansion of the Fertility Preservation Program to All Newly Diagnosed Prepubertal Patients with Cancer at a Pediatric Hospital.","authors":"Antonia P Leavitt, Karen H Albritton, Mary Cazzell, Eleanor Stevenson","doi":"10.1177/27527530231221134","DOIUrl":"10.1177/27527530231221134","url":null,"abstract":"<p><p><b>Background:</b> As the majority of pediatric patients with cancer survive their disease, generating a population of over 500,000 childhood cancer survivors in the United States, it is imperative to minimize the lifelong consequences of treatment, which include temporary or permanent infertility caused by certain cancer treatments. A fertility consultation at diagnosis can provide patients and families with the opportunity to be informed regarding the likelihood of gonadal dysfunction and to consider fertility preservation. <b>Method:</b> After our pediatric hospital started to offer tissue cryopreservation, we initiated this evidence-based interventional quality improvement project. Our primary aim was to ensure that all newly diagnosed prepubertal patients with cancer who met the criteria for fertility tissue preservation were correctly identified and offered an educational consultation and preservation. <b>Results:</b> Between July 15, 2022 and October 30, 2022, 54 patients' treatment plans were evaluated to determine treatment-related infertility risk using the Oncofertility Consortium Pediatric Initiative Network's Risk Assessment tool. Fifteen patients were at a high level of significantly increased risk and 13 were eligible for consultation. Seven (46%) patients and their families received a consultation. Initiation of treatment before referral was the primary reason for lack of consultation. Six of seven patients receiving consultation (86%) elected to undergo preservation. Preservation procedures did not cause a delay in starting treatment for those patients. <b>Discussion:</b> A fertility preservation program with established policies and processes can increase the likelihood that prepubertal patients at high risk for infertility are correctly identified, educated, and offered preservation.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"212-219"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140207703","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":"A Dimensional Analysis of School Connectedness in Adolescents Newly Diagnosed With Cancer.","authors":"Debra Giugliano","doi":"10.1177/27527530231214534","DOIUrl":"10.1177/27527530231214534","url":null,"abstract":"<p><p><b>Background:</b> Adolescents newly diagnosed with cancer must navigate medical, psychosocial, and educational issues when confronting this life-threatening illness. Frequent hospitalizations and intense therapy disrupt attendance at school and social events. Research supports that school connectedness is a protective factor associated with improved adolescent health, psychological, and academic outcomes. However, this phenomenon is understudied in adolescents newly diagnosed with cancer. <b>Method:</b> This qualitative inquiry used a dimensional analysis method to uncover the nature of school connectedness in adolescents newly diagnosed with cancer prior to school reentry. Semistructured interviews with 19 adolescents explored school relationships and experiences at the time of cancer diagnosis. Data collection and inductive analysis occurred simultaneously. <b>Results:</b> Analysis revealed four key dimensions: \"School Days and Ways,\" \"The Boom,\" \"The Pause,\" and \"Connection Reconciliation: Me, You, and Learning.\" Additionally, \"Social Scenes,\" \"Shared Experiences,\" and \"Seeing and Being With\" emerged as subdimensions of \"School Days and Ways.\" All adolescents in this study described being negatively impacted by the cancer experience with universal disruption in school relationships and diminished school connections. However, the desire to restore unraveled or broken relationships and reconcile connections with self, others from the school, and learning were highly salient. <b>Discussion:</b> This research uncovers the meaning and context of school connectedness prior to and following a cancer diagnosis, illuminating a deeper understanding of the impact of a cancer diagnosis on adolescents, school relationships, and learning. The findings provide direction in supporting adolescents as they confront the physical, psychosocial, and educational disruptions caused by their cancer.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"188-198"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140207702","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}
Avery McNall, Karen Lucas Breda, Katherine A Hinderer
{"title":"Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents.","authors":"Avery McNall, Karen Lucas Breda, Katherine A Hinderer","doi":"10.1177/27527530231194596","DOIUrl":"10.1177/27527530231194596","url":null,"abstract":"<p><p><b>Background:</b> Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care needed for the dying child. An evidence-based continuing professional development activity provided a novel approach to improve the knowledge, attitudes, and comfort levels of nurse residents related to pediatric EOL care. <b>Method:</b> A high-fidelity simulation module of a pediatric oncology patient at the EOL was embedded into a 12-month nurse residency program. The module employed several teaching strategies including a storytelling approach. <b>Results:</b> Thirteen pediatric nurse residents participated in the program. While the evidence-based intervention increased participants' EOL care knowledge, their overall attitudes, and comfort levels remained unchanged. <b>Discussion:</b> EOL simulation with a storytelling approach is a highly valuable method of teaching new nurses how to care for a dying patient. Additional studies are needed to explore how to increase the comfort levels of new nurses in the delicate population of pediatric hematology/oncology.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":" ","pages":"220-228"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140207704","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}