Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies

Tomlinson, Deborah; Plenert, Erin; Dadzie, Grace; Loves, Robyn; Cook, Sadie; Schechter, Tal; Dupuis, L. Lee; Sung, Lillian

doi:10.1007/s00520-020-05930-y

Cited by 15 publications

(15 citation statements)

References 19 publications

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“…Other children may perceive higher quality communication over time as parents recover from the initial shock of their child's new cancer diagnosis or relapse and receive appropriate support from health care providers to fully include and engage the child in communication and decision making 12 . The discrepancy in results between child and parent reports found in our study is similar to the discordance found in prior childhood cancer studies 42,43 . These differences highlight the need for inclusion of multiple informants in future studies.…”

Section: Discussionsupporting

confidence: 42%

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Effect of time on quality of parent–child communication in pediatric cancer

Cowfer

Dietrich

Akard

2021

Pediatric Blood & Cancer

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Background A diagnosis of childhood cancer results in new parent–child communication challenges. Little is known about how communication changes over time after diagnosis or relapse. The objective of this study was to determine the effect of time since diagnosis and relapse on quality of parent–child communication. We hypothesized that there would be a positive correlation between time and quality of parent–child communication. Methods Cross‐sectional study in children (7–17 years) with relapsed/refractory cancer and their caregivers, who spoke English, were not cognitively impaired, and had internet access. Parents were recruited through Facebook ads. Parents and children completed the Parent–Adolescent Communication Scale (PACS), a 20‐item measure of communication quality, with openness and problem subscales. Spearman's rho (rs) coefficients assessed correlations between PACS scores and time since diagnosis/relapse. Results There was a statistically significant negative correlation between parent PACS scores and time since child's cancer diagnosis (rs = −0.21, p = .02), indicating a tendency for overall worsening communication as time since diagnosis increased. There was a positive correlation between the parent PACS problem scores and time since diagnosis (rs = +0.22, p = .01), indicating more problematic communication as time since diagnosis increased. Correlations of time since relapse and PACS scores were small and not statistically significant. Conclusion Parent–child communication worsens over time following a child's cancer diagnosis with more communication problems, contrary to our hypothesis. Future studies are needed to evaluate intervention timing to best support parent–child communication beyond the new‐diagnosis period.

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Section: Discussionsupporting

confidence: 42%

“…12 The discrepancy in results between child and parent reports found in our study is similar to the discordance found in prior childhood cancer studies. 42,43 These differences highlight the need for inclusion of multiple informants in future studies.…”

Section: Contrary To Our Hypothesis Increased Time Since Cancer Diagn...mentioning

confidence: 99%

Effect of time on quality of parent–child communication in pediatric cancer

Cowfer

Dietrich

Akard

2021

Pediatric Blood & Cancer

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“…Two children in our study, who were perceived by their parents to have had a positive overall experience, described a negative experience. Poor agreement between parents and children regarding the child's symptoms and psychological stress has been described in the pediatric oncology population (Mack et al, 2020; Tomlinson et al, 2021). Reasons for disagreements are multifactorial, and can include parent characteristics (e.g., parents’ own health), child characteristics (e.g., gender), differing perceptions or expectations, ability to observe the symptom/distress, and lack of communication, among other reasons (Mack et al, 2020; Tomlinson et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for ¹³¹I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study

LaFond

Yost

Lankin

et al. 2022

Journal of Pediatric Hematology/Oncology Nursing

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Background: Administration of 131I-metaiodobenzylguanidine (131I-MIBG) for neuroblastoma requires hospitalization in single-room isolation and limits caregiver physical contact due to the child's radioactive burden. Though used for decades, there is a dearth of research on the experiences of children and their parents while isolated. Methods: This qualitative descriptive study evaluated the experience of children with neuroblastoma undergoing single-room isolation for 131I-MIBG therapy and their parents. Ten nurses, nine parents, and five children were interviewed; transcripts were analyzed applying a conventional content analysis approach. Results: Child themes included overall experiences ranging from positive to negative; emotional stress was common; symptoms were common but mostly managed; the children were adequately prepared for isolation; and audiovisual technology and entertainment helped. The indwelling urinary catheter was a source of emotional stress and/or pain for several children. Parent themes included I thought it was going to be a lot worse; it gets better with time; feeling concerned and overwhelmed; prepared as much as you can be; and you feel like you’re not alone. Discussion: Findings suggest that children and parents would benefit from additional coping support interventions to address emotional distress. Efforts should be made to identify other sources of technology or room designs that can maximize the child's sense of connection with parents and healthcare professionals. Additional research is needed to examine the impact of this isolation experience on the long-term psychological outcomes of children and parents.

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“…As shown by the correlation and regression analyses performed in our study, the parents' proxy reports of PTG in the child are more strongly associated with the parents' own PTG than with the child self-reported PTG. Perhaps parents with higher PTG expect their children to perceive the more positive aspects of trauma or project their own feelings and perception of positive change following a trauma onto their child as proposed by Smith et al [18] and Tomlinson et al [17].…”

Section: Discussionmentioning

confidence: 99%

“…Tomlinson et al [17] identified several psychological factors related to discrepancies in child's self-reports and parents' proxy reports including projection of the parents' own feelings and assumptions. Similarly, Smith et al [18] included parental affect, expectations and beliefs among the psychosocial factors affecting the parents' proxy reports of the child's symptoms.…”

Section: Parents As Proxy Reportersmentioning

confidence: 99%

Concordance of Child Self-Reported and Parent Proxy-Reported Posttraumatic Growth in Childhood Cancer Survivors

Koutná

Blatný

Jelínek

2021

Cancers

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This article aimed to analyze concordance of parent- and child-reported child posttraumatic growth (PTG) following pediatric cancer, the influence of the parents’ own level of PTG on the level of concordance and the influence of the parents’ and the child’s own level of PTG on the parents’ proxy reports of PTG in the child. The sample included 127 parent–child dyads. The children provided self-reports of PTG and the parents provided reports of their own as well as the child’s PTG. Overall, the results showed poor parent–child agreement on the child PTG, with the parents proxy-reporting higher levels of PTG than the children. The parents’ proxy reports of the child PTG were the most accurate at the lowest levels of the parents’ own level of PTG. The parents’ own level of PTG was a stronger predictor of the parents’ proxy reports than the child self-reported PTG. The results suggest that parents are not very accurate reporters of PTG in the child; therefore, their reports should be completed with child self-reports whenever possible.

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Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies

Cited by 15 publications

References 19 publications

Effect of time on quality of parent–child communication in pediatric cancer

Effect of time on quality of parent–child communication in pediatric cancer

The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for ¹³¹I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study

Concordance of Child Self-Reported and Parent Proxy-Reported Posttraumatic Growth in Childhood Cancer Survivors

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Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies

Cited by 15 publications

References 19 publications

Effect of time on quality of parent–child communication in pediatric cancer

Effect of time on quality of parent–child communication in pediatric cancer

The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for 131I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study

Concordance of Child Self-Reported and Parent Proxy-Reported Posttraumatic Growth in Childhood Cancer Survivors

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The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for ¹³¹I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study