Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala
PURPOSEAlthough > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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American Society of Clinical Oncology
2021-12-01
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| Series: | JCO Global Oncology |
| Online Access: | https://ascopubs.org/doi/10.1200/GO.21.00232 |
| _version_ | 1818314426293420032 |
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| author | Dylan E. Graetz Silvia Elena Rivas Huiqi Wang Yuvanesh Vedaraju Ana Lucia Fuentes Annie Caceres-Serrano Federico Antillon-Klussmann Meenakshi Devidas Monika L. Metzger Carlos Rodriguez-Galindo Jennifer W. Mack |
| author_facet | Dylan E. Graetz Silvia Elena Rivas Huiqi Wang Yuvanesh Vedaraju Ana Lucia Fuentes Annie Caceres-Serrano Federico Antillon-Klussmann Meenakshi Devidas Monika L. Metzger Carlos Rodriguez-Galindo Jennifer W. Mack |
| author_sort | Dylan E. Graetz |
| collection | DOAJ |
| description | PURPOSEAlthough > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication.METHODSA cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala.RESULTSGuatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and late effects (97%). Only 67% were always given the information they needed without asking for it, and most caregivers sometimes (56%) or always (18%) had questions they wanted to discuss but did not. Approximately half of the caregivers (54%) correctly identified their child's diagnosis, primary site, disease extent (localized v metastatic), proposed treatment length, and treatment intent (curative v palliative). Caregivers of children with leukemia were more likely to correctly identify all attributes than those whose children had solid tumors (P < .001).CONCLUSIONCaregivers in Guatemala prioritize many of the same aspects of diagnostic communication as parents in the United States, and experience similar challenges. Shared communication values offer potential for adaptation of communication interventions across settings with varying resources and diverse cultures. |
| first_indexed | 2024-12-13T08:49:27Z |
| format | Article |
| id | doaj.art-b160ed612bd74de4b0cdb0194c8987de |
| institution | Directory Open Access Journal |
| issn | 2687-8941 |
| language | English |
| last_indexed | 2024-12-13T08:49:27Z |
| publishDate | 2021-12-01 |
| publisher | American Society of Clinical Oncology |
| record_format | Article |
| series | JCO Global Oncology |
| spelling | doaj.art-b160ed612bd74de4b0cdb0194c8987de2022-12-21T23:53:23ZengAmerican Society of Clinical OncologyJCO Global Oncology2687-89412021-12-0171529153610.1200/GO.21.00232Communication Priorities and Experiences of Caregivers of Children With Cancer in GuatemalaDylan E. Graetz0Silvia Elena Rivas1Huiqi Wang2Yuvanesh Vedaraju3Ana Lucia Fuentes4Annie Caceres-Serrano5Federico Antillon-Klussmann6Meenakshi Devidas7Monika L. Metzger8Carlos Rodriguez-Galindo9Jennifer W. Mack10St Jude Children's Research Hospital, Memphis, TNUnidad Nacional de Oncología Pediátrica, Guatemala City, GuatemalaSt Jude Children's Research Hospital, Memphis, TNSt Jude Children's Research Hospital, Memphis, TNUnidad Nacional de Oncología Pediátrica, Guatemala City, GuatemalaUnidad Nacional de Oncología Pediátrica, Guatemala City, GuatemalaUnidad Nacional de Oncología Pediátrica, Guatemala City, GuatemalaSt Jude Children's Research Hospital, Memphis, TNSt Jude Children's Research Hospital, Memphis, TNSt Jude Children's Research Hospital, Memphis, TNDana Farber Cancer Institute/Boston Children's Hospital, Boston, MAPURPOSEAlthough > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication.METHODSA cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala.RESULTSGuatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and late effects (97%). Only 67% were always given the information they needed without asking for it, and most caregivers sometimes (56%) or always (18%) had questions they wanted to discuss but did not. Approximately half of the caregivers (54%) correctly identified their child's diagnosis, primary site, disease extent (localized v metastatic), proposed treatment length, and treatment intent (curative v palliative). Caregivers of children with leukemia were more likely to correctly identify all attributes than those whose children had solid tumors (P < .001).CONCLUSIONCaregivers in Guatemala prioritize many of the same aspects of diagnostic communication as parents in the United States, and experience similar challenges. Shared communication values offer potential for adaptation of communication interventions across settings with varying resources and diverse cultures.https://ascopubs.org/doi/10.1200/GO.21.00232 |
| spellingShingle | Dylan E. Graetz Silvia Elena Rivas Huiqi Wang Yuvanesh Vedaraju Ana Lucia Fuentes Annie Caceres-Serrano Federico Antillon-Klussmann Meenakshi Devidas Monika L. Metzger Carlos Rodriguez-Galindo Jennifer W. Mack Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala JCO Global Oncology |
| title | Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala |
| title_full | Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala |
| title_fullStr | Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala |
| title_full_unstemmed | Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala |
| title_short | Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala |
| title_sort | communication priorities and experiences of caregivers of children with cancer in guatemala |
| url | https://ascopubs.org/doi/10.1200/GO.21.00232 |
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