COVID-19 Information-Seeking, Health Literacy, and Worry and Anxiety During the Early Stage of the Pandemic in Switzerland: A Cross-Sectional Study.

Objectives: To describe COVID-19 information-seeking behavior (CISB) during the first stage of the pandemic in Switzerland and identify its determinants. Methods: We conducted an online cross-sectional survey (4 May to 6 July 2020). Participants self-reported their CISB (information sources and frequency), personal COVID-19 situation (e.g., perception about having had COVID-19), sociodemographic information, and completed validated measures of health literacy, and worry and anxiety. Data were analyzed using descriptive statistics and logistic regressions. Results: We included 1,505 participants (24.7% male; mean age = 43.0 years, SD = 13.9). Most participants reported searching for information daily (n = 1,023, 68.0%) and referring to multiple information sources (mean 3.7, SD = 1.5). Commonly used sources were official websites (n = 1,129, 75.0%) and newspapers (n = 997, 66.2%). Participants with higher health literacy were more likely to seek information daily and use online resources, but less likely to use personal networks than those with lower health literacy. We did not find any association between CISB and worry and anxiety. Conclusion: More opportunities for personal dialogue and education about reliable online information resources should be encouraged to optimize the CISB of groups with lower health literacy

Health-related quality of life before and during the COVID-19 pandemic in Switzerland: a cross-sectional study.

INTRODUCTION The COVID-19 pandemic forced people to give up their daily routines and adjust to new circumstances. This might have affected health-related quality of life (HRQOL). We aimed to compare HRQOL during the first COVID-19 wave in 2020 to HRQOL before the pandemic and to identify determinants of HRQOL during the pandemic in Switzerland. METHODS We conducted a cross-sectional online survey during the pandemic (between May and July 2020; CoWELL sample; convenience sample). Before the pandemic (2015-2016), we had conducted a cross-sectional paper-based survey among a representative random sample of the Swiss general population (SGP sample). In both samples, we assessed physical and mental HRQOL (Short Form-36) and socio-demographic characteristics. In the CoWELL sample, we additionally assessed health- and COVID-19-related characteristics. Data were analysed using linear regressions. RESULTS The CoWELL sample included 1581 participants (76% women; mean age = 43 years, SD = 14 years) and the SGP sample 1209 participants (58% women, mean age = 49 years, SD = 15 years). Adjusted for sex, age, and education, the CoWELL sample reported higher physical HRQOL (PCS, +5.8 (95% CI: 5.1, 6.6), p < 0.001) and lower mental HRQOL (MCS, -6.9 (-7.8, -6.0), p < 0.001) than the SGP sample. In the CoWELL sample, especially persons with lower health literacy, who had no support network or who have had COVID-19, reported lower HRQOL. DISCUSSION Aspects unique to the COVID-19 pandemic affected HRQOL. Vulnerable persons such as those having had COVID-19, less support opportunities, and with lower health literacy are especially prone to impaired HRQOL during the COVID-19 pandemic

Understanding caregivers' decision to vaccinate childhood cancer survivors against COVID‐19

Abstract Background Vaccination against COVID‐19 is recommended for childhood cancer survivors (CCS). This study aimed to identify antecedents contributing to caregivers' decisions to vaccinate CCS aged 5–17 years against COVID‐19 by applying the Theory of Planned Behavior. Methods Participants in this cross‐sectional study completed an online survey assessing caregiver attitudes, subjective norms, perceived behavioral control, intention to vaccinate CCS, CCS vaccination status, COVID‐19 health literacy, and frequency of COVID‐19 information‐seeking. Surveys were completed between May and June 2022 following approval for the emergency use of COVID‐19 vaccines among children aged ≥5 years in the U.S. Data were analyzed using unadjusted linear regressions and structural equation modeling. Results Participants were caregivers (n = 160, 87.5% biological mothers, 75.6% white/non‐Hispanic) of CCS (n = 160, 44.4% female, mean (M) = 12.5 years old, M = 8.0 years off treatment). 70.0% (n = 112) of caregivers and 53.8% (n = 86) of CCS received a COVID‐19 vaccine. Over one‐third (37.5%) of caregivers reported disagreement or indecision about future COVID‐19 vaccination for the CCS. Caregivers' intention (β = 0.962; standard error [S.E.] = 0.028; p < 0.001) was highly related to CCS vaccination status. Attitudes (β = 0.568; S.E. = 0.078; p < 0.001) and subjective norms (β = 0.322; S.E. = 0.062; p < 0.001) were associated with intention. Higher frequency of COVID‐19 information‐seeking (β = 0.313; S.E. = 0.063; p < 0.001) and COVID‐19 health literacy (β = 0.234; S.E. = 0.059; p < 0.001) had a positive indirect effect on intention through attitudes and subjective norms. Conclusions Caregivers' vaccination intentions for minor CCS are highly related to vaccination behavior and shaped by attitudes, subjective norms, COVID‐19 health literacy, and frequency of COVID‐19 information‐seeking. Promoting tailored communication with caregivers of CCS and encouraging them to review reputable sources of information can address their vaccine hesitancy

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer – the GROKids Project: a population-based mixed-methods study protocol

Abstract Background Grandparents play a crucial role in providing their families with love, support, and wisdom, often also supporting them in practical and financial ways. The psychosocial effects experienced by grandparents when a grandchild is diagnosed with an illness can be significant, including increased stress, anxiety, grief, and disruptions in their own lives. Yet, the experience of grandparents is often overlooked in the literature. Methods/design The GROKids Project aims to investigate how grandparents are affected by a grandchild's cancer diagnosis. It employs a mixed-methods approach and consists of three studies: a longitudinal cohort study (Study 1) and a qualitative study (Study 2) involving grandparents of children with a recent cancer diagnosis, and a cross-sectional study (Study 3) of grandparents of childhood cancer survivors. Study 1 covers four time points over two years after the cancer diagnosis, while Study 2 explores the lived experiences of a subsample of these grandparents. Study 3 collects data from grandparents of childhood cancer survivors diagnosed 3 to 10 years ago. Participants are recruited across eight pediatric oncology centers in Switzerland, and through patient advocacy and support groups. Eligibility criteria include having a grandchild diagnosed with cancer and being fluent in German, French, or Italian. Study procedures involve requesting grandparents’ contacts from eligible families, and later contacting grandparents, providing study information, obtaining informed consent, and sending out questionnaires by post or online. Reminder calls and mails are used to improve response rates. Data analysis includes multilevel regression (Study 1), thematic analysis (Study 2), and regression analyses (Study 3). Various validated questionnaires are used to assess physical health and overall well-being, psychological health, internal, and external factors. Discussion This project addresses the gaps in understanding the psychosocial effects on grandparents having a grandchild diagnosed with cancer. It utilizes a comprehensive approach, including multiple methodologies and considering the broader family context. The project’s strengths lie in its mixed-methods design, longitudinal approach, and inclusion of the perspectives of the sick children, siblings, and parents, besides grandparents. By gaining a more profound understanding of grandparents' experiences, researchers and healthcare professionals can develop targeted interventions and support services to address grandparents’ unique needs

Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.

OBJECTIVE Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope

Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Abstract Purpose Cancer-related fatigue (CRF) negatively affects the lives of childhood, adolescent, and young adult (CAYA) cancer survivors. We aimed to provide an evidence-based clinical practice guideline (CPG) with internationally harmonized CRF surveillance recommendations for CAYA cancer survivors diagnosed &lt; 30 years. Methods This CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of four existing CPGs, we performed systematic literature searches. We screened articles for eligibility, assessed quality, extracted, and summarized the data from included articles. We formulated recommendations based on the evidence and clinical judgment. Results Of 3647 articles identified, 70 articles from 14 countries were included. The prevalence of CRF in CAYA cancer survivors ranged from 10–85%. We recommend that healthcare providers are aware of the risk of CRF, implement regular screening with validated measures, and recommend effective interventions to fatigued survivors. Conclusions A considerable proportion of CAYA cancer survivors suffers from CRF even years after the end of treatment. Implications for Cancer Survivors We recommend that healthcare providers adopt regular screening to detect and treat CRF early and positively influence survivors’ health and quality of life