Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s): Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged >=2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score >=33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. Result(s): Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. Conclusion(s): Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress. Copyright © 2021 American Academy of Hospice and Palliative Medicine
Requena ML; Avery M; Feraco AM; Uzal LG; Wolfe J; Dussel V
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.12.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.009</a>
Parent Perceptions of Team-Delivered Care for Children with Advanced Cancer: A report from the PediQUEST study
Childhood Cancer; Interdisciplinary Care; Interprofessional Healthcare Teams; Multidisciplinary Care; Pediatric Oncology; Psychosocial Oncology; Team-Delivered Care
CONTEXT: Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC). OBJECTIVES: We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics. METHODS: Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multi-site symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding 3 months. Likert scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork and other factors. Factors associated with parent perceptions of "excellent" TDC were identified using Fisher's Exact test. RESULTS: Eighty-six parents (83%) responded. Over the preceding 3 months, 63% (n=54) of parents reported excellent TDC. However, only 47% (n=40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%, n=60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, primary nurse) was associated with excellent TDC (all p
Feraco AM; Ananth P; Dussel V; Al-Sayegh H; Ma C; Rosenberg AR; Feudtner C; Wolfe J
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.05.019</a>
Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
Feraco AM; Dussel V; Orellana L; Kang TI; Geyer JR; Rosenberg AR; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.11.013</a>