COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

2022

2022 Apr 23

1465-735X

<p><strong>OBJECTIVE: </strong>To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA.</p>

<p><strong>METHODS: </strong>The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age.</p>

<p><strong>RESULTS: </strong>Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified.</p>

<p><strong>DISCUSSION: </strong>Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.</p>

10.1093/jpepsy/jsac036

J Pediatr Psychol

35459946

Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment.

2016

2016 Jun 20

1099-1611

<p><strong>BACKGROUND: </strong>Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to assess acceptability of screening for parents and evaluate associations between family risk factors and patient HRQL in the first year post-diagnosis.</p>

<p><strong>PROCEDURE: </strong>Sixty-seven parents of children with cancer completed the Psychosocial Assessment Tool (family risk), Distress Thermometer (caregiver distress), Posttraumatic Stress Disorder Checklist-Civilian 6 (caregiver traumatic stress), PedsQL 4.0 (parent-proxy report of patient HRQL) and four acceptability questions via a tablet (iPad).</p>

<p><strong>RESULTS: </strong>Patients (Mage = 9.5 SD = 5.5&nbsp;years) were equally distributed across major pediatric cancer diagnoses. The majority of parents endorsed electronic screening as acceptable (70%-97%). Patient gender, diagnosis, intensity of treatment and time since diagnosis were not significantly correlated with family risk, caregiver distress, traumatic stress, or patient HRQL. The full regression model predicting total HRQL was significant (R(2)  = .42, F(4,64) = 10.7, p = .000). Age (older) was a significant covariate, family risk and caregiver distress were significant independent predictors of poorer total HRQL. The full regression models for physical and psychosocial HRQL were significant; age and caregiver distress were independent predictors of physical HRQL, and age and family risk were independent predictors of psychosocial HRQL.</p>

<p><strong>CONCLUSIONS: </strong>Screening is acceptable for families and important for identifying risk factors associated with poorer patient HRQL during childhood cancer treatment. Targeted interventions addressing family resource needs as well as parent distress identified through screening may be effective in promoting patient HRQL. Copyright © 2016 John Wiley &amp; Sons, Ltd.</p>

10.1002/pon.4171

Psychooncology

27321897

Acceptability and feasibility of family use of The Cellie Cancer Coping Kit.

2012

3315-24

2012 Dec

1433-7339

<p><strong>PURPOSE: </strong>This study aims to examine the acceptability and feasibility of child and parent use of The Cellie Cancer Coping Kit (Cellie Kit). The Cellie kit is designed to promote coping and decrease distress in children undergoing pediatric cancer treatment. It includes a plush toy, coping cards, and book for caregivers.</p>

<p><strong>METHODS: </strong>In study 1, 15 children (ages 6-12) undergoing cancer treatment and their parents reviewed the Cellie Kit materials and provided feedback on its acceptability and perceived feasibility of use. In study 2, 15 additional children (ages 6-12) and their parents participated in a pilot intervention of the Cellie Kit and completed follow-up interviews and a satisfaction measure.</p>

<p><strong>RESULTS: </strong>In study 1, all parents reported that they could understand the book and enact its coping tips and that the Cellie Kit was relevant to their families' cancer experience. Children explained they would use the Cellie Kit for emotional expression, fun, and comfort. The Cellie Kit was revised after study 1 to integrate additional material suggested by families. In study 2, all families completing follow-up assessments reported utilizing the Cellie Kit. A majority (86 % of children and 100 % of parents) indicated that they would recommend the Cellie Kit to others, and most (64 % of children and 93 % of parents) reported learning new information and/or skills from the Cellie Kit.</p>

<p><strong>CONCLUSIONS: </strong>The Cellie Kit is an engaging, helpful, and easy-to-use coping tool for families facing pediatric cancer treatment. Future research should examine the efficacy of brief interventions using the Cellie Kit to promote adjustment to pediatric cancer.</p>

10.1007/s00520-012-1475-y

Support Care Cancer

22572922