A large proportion of the global burden of childhood cancer arises in China. These patients have a poor quality of life (QoL) and their family caregivers have high unmet needs. This paper examined the association between the unmet needs of family caregivers and the care recipient’s QoL. A total of 286 childhood cancer caregivers were included in this cross-sectional study. Unmet needs and depression among caregivers were assessed by the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C) and the Patient Health Questionnaire (PHQ-9), respectively. The patient’s QoL was proxy-reported by the Pediatric Quality of Life Inventory Measurement Models (PedsQL 3.0 scale Cancer Module). Descriptive analyses, independent Student’s t-tests, one-way ANOVA, and mediation analyses were performed. The mean scores (standard deviations) for unmet needs, depression, and QoL were 65.47 (26.24), 9.87 (7.26), and 60.13 (22.12), respectively. A caregiver’s unmet needs (r = −0.272, p < 0.001) and depression (r = −0.279, p < 0.001) were negatively related to a care recipient’s QoL. Depression among caregivers played a mediating role in the relationship between a caregiver’s unmet needs and a care recipient’s QoL. As nursing interventions address depression among caregivers, it is important to standardize the programs that offer psychological support to caregivers.
Background Pediatric cancer patients in China often present at an advanced stage of disease resulting in lower survival and poorer health outcomes. One factor hypothesized to contribute to delays in pediatric cancer has been the online health information–seeking (OHIS) behaviors by caregivers. Objective This study aims to examine the association between OHIS behaviors by caregivers and delays for Chinese pediatric cancer patients using a mixed methods approach. Methods This study used a mixed methods approach, specifically a sequential explanatory design. OHIS behavior by the caregiver was defined as the way caregivers access information relevant to their children’s health via the Internet. Delays in pediatric cancer were defined as any one of the following 3 types of delay: patient delay, diagnosis delay, or treatment delay. The quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and binary logistic regression analysis, all performed using Stata. The qualitative analysis methods included conceptual content analysis and the Colaizzi method. Results A total of 303 pediatric cancer patient-caregiver dyads was included in the quantitative survey, and 29 caregivers completed the qualitative interview. Quantitative analysis results revealed that nearly one-half (151/303, 49.8%) of patients experienced delays in pediatric cancer, and the primary type of delay was diagnosis delay (113/303, 37.3%), followed by patient delay (50/303, 16.5%) and treatment delay (24/303, 7.9%). In this study, 232 of the 303 (76.6%) caregiver participants demonstrated OHIS behaviors. When those engaged in OHIS behaviors were compared with their counterparts, the likelihood of patient delay more than doubled (odds ratio=2.21; 95% CI 1.03-4.75). Qualitative analysis results showed that caregivers’ OHIS behaviors impacted the cancer care pathway by influencing caregivers’ symptom appraisal before the first medical contact and caregivers’ acceptance of health care providers’ diagnostic and treatment decisions. Conclusions Our findings suggest that OHIS among Chinese pediatric caregivers may be a risk factor for increasing the likelihood of patient delay. Our government and society should make a concerted effort to regulate online health information and improve its quality. Specialized freemium consultations provided by health care providers via online health informatic platforms are needed to shorten the time for caregivers’ cancer symptom appraisal before the first medical contact.
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