Mostrar el registro sencillo del ítem
dc.contributor.author
Requena, Maria Laura
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.contributor.author
Avery, Madeline
dc.contributor.author
Feraco, Angela M.
dc.contributor.author
Uzal, Luciano Gabriel
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.contributor.author
Wolfe, Joanne
dc.contributor.author
Dussel, Veronica
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.date.available
2023-06-15T12:49:19Z
dc.date.issued
2022-04
dc.identifier.citation
Requena, Maria Laura; Avery, Madeline; Feraco, Angela M.; Uzal, Luciano Gabriel; Wolfe, Joanne; et al.; Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study; Elsevier Science Inc.; Journal Of Pain And Symptom Management; 63; 4; 4-2022; 548-562
dc.identifier.issn
0885-3924
dc.identifier.uri
http://hdl.handle.net/11336/200666
dc.description.abstract
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objectives: To identify barriers to effective symptom management in pediatric advanced cancer. Methods: 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. Results: 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: 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.
dc.format
application/pdf
dc.language.iso
eng
dc.publisher
Elsevier Science Inc.
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.rights
info:eu-repo/semantics/restrictedAccess
dc.rights.uri
https://creativecommons.org/licenses/by-nc-sa/2.5/ar/
dc.subject
ATTITUDES
dc.subject
CANCER
dc.subject
HEALTH KNOWLEDGE
dc.subject
PALLIATIVE CARE
dc.subject
PATIENT CARE MANAGEMENT
dc.subject
PEDIATRICS
dc.subject
PRACTICE
dc.subject
QUALITATIVE RESEARCH
dc.subject
SYMPTOM BARRIERS
dc.subject
SYMPTOM MANAGEMENT
dc.subject.classification
Salud Pública y Medioambiental
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.subject.classification
Ciencias de la Salud
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.subject.classification
CIENCIAS MÉDICAS Y DE LA SALUD
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.title
Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study
dc.type
info:eu-repo/semantics/article
dc.type
info:ar-repo/semantics/artículo
dc.type
info:eu-repo/semantics/publishedVersion
dc.date.updated
2023-06-12T17:33:41Z
dc.journal.volume
63
dc.journal.number
4
dc.journal.pagination
548-562
dc.journal.pais
Estados Unidos
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.description.fil
Fil: Requena, Maria Laura. Instituto de Efectividad Clínica y Sanitaria; Argentina
dc.description.fil
Fil: Avery, Madeline. No especifíca;
dc.description.fil
Fil: Feraco, Angela M.. Harvard Medical School; Estados Unidos
dc.description.fil
Fil: Uzal, Luciano Gabriel. Instituto de Efectividad Clínica y Sanitaria; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
dc.description.fil
Fil: Wolfe, Joanne. Harvard Medical School; Estados Unidos
dc.description.fil
Fil: Dussel, Veronica. Instituto de Efectividad Clínica y Sanitaria; Argentina
dc.journal.title
Journal Of Pain And Symptom Management
![Se ha confirmado la validez de este valor de autoridad por un usuario](/themes/CONICETDigital/images/authority_control/invisible.gif)
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/doi/http://dx.doi.org/10.1016/j.jpainsymman.2021.12.009
Archivos asociados