Deborah Tomlinson1, Erin Plenert2, Grace Dadzie2, Robyn Loves2, Sadie Cook2, Tal Schechter3, L Lee Dupuis2,4,5, Lillian Sung2,3. 1. Child Health Evaluative Sciences, The Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, Ontario, M5G 0A4, Canada. deborah.tomlinson@sickkids.ca. 2. Child Health Evaluative Sciences, The Hospital for Sick Children, Peter Gilgan Centre for Research and Learning, Toronto, Ontario, M5G 0A4, Canada. 3. Division of Haematology and Oncology, The Hospital for Sick Children, Toronto, Canada. 4. Department of Pharmacy, The Hospital for Sick Children, Toronto, Canada. 5. Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, Canada.
Abstract
PURPOSE: To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. METHODS: We enrolled child and parent dyads, who understood English and where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting. RESULTS: We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion. CONCLUSION: We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.
PURPOSE: To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. METHODS: We enrolled child and parent dyads, who understood English and where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting. RESULTS: We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion. CONCLUSION: We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.
Authors: Christina K Ullrich; Angie Mae Rodday; Kristin M Bingen; Mary Jo Kupst; Sunita K Patel; Karen L Syrjala; Lynnette L Harris; Christopher J Recklitis; Grace Chang; Eva C Guinan; Norma Terrin; Hocine Tighiouart; Sean Phipps; Susan K Parsons Journal: Cancer Date: 2017-04-07 Impact factor: 6.860
Authors: Deborah Tomlinson; Erin Plenert; Grace Dadzie; Robyn Loves; Sadie Cook; Tal Schechter; Jennifer Furtado; L Lee Dupuis; Lillian Sung Journal: Cancer Med Date: 2020-06-21 Impact factor: 4.452