Carolyn R Bates1, Diane Fairclough2, Robert B Noll3, Maru E Barrera4, Mary Jo Kupst5, Anna M Egan6,7, Maria A Gartstein8, Emily L Ach9, Cynthia A Gerhardt10,11, Kathryn Vannatta10,11. 1. Department of Pediatrics, University of Kansas Medical Center, Kansas City, Kansas, USA. 2. Department of Biostatistics and Informatics, Colorado School of Public Health, Aurora, Colorado, USA. 3. Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA. 4. Division of Hematology/Oncology, Department of Psychology, The Hospital for Sick Children, Toronto, Ontario, Canada. 5. Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin, USA. 6. Department of Pediatrics, Children's Mercy Kansas City, Kansas City, Missouri, USA. 7. University of Missouri Kansas City School of Medicine, Kansas City, Missouri, USA. 8. Department of Psychology, Washington State University, Pullman, USA. 9. Department of Psychiatry, Stanford University School of Medicine, Stanford, California, USA. 10. Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA. 11. Department of Pediatrics, The Ohio State University, Columbus, Ohio, USA.
Abstract
BACKGROUND: Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth. PROCEDURE: As part of a five-site study, we utilized a matched sample design to evaluate psychosocial functioning of 301 caregivers of 189 PBTS (ages 8-15) who were 1-5 years post treatment, and 286 caregivers of 187 comparison youth matched for sex, race, and age. Caregivers completed measures of psychological symptoms, caregiver burden, and perceptions of social support. Repeated measures mixed models compared outcomes between groups and examined differences based on caregiver sex. Socioeconomic status (SES) was examined as a moderator of significant main effects. RESULTS: Caregivers of PBTS reported similar levels of psychological symptoms to caregivers of comparison youth. Mothers of PBTS mothers reported higher caregiver burden and lower perceptions of social support than mothers of comparison youth. Low SES exacerbated group differences in caregiver burden. CONCLUSIONS: Mothers of PBTS may have more caregiving responsibilities and perceive less social support, but reported similar levels of psychological symptoms to comparison mothers; fathers of PBTS were similar to comparison fathers. The mechanisms involved in this complex psychosocial dynamic require further investigation.
BACKGROUND: Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth. PROCEDURE: As part of a five-site study, we utilized a matched sample design to evaluate psychosocial functioning of 301 caregivers of 189 PBTS (ages 8-15) who were 1-5 years post treatment, and 286 caregivers of 187 comparison youth matched for sex, race, and age. Caregivers completed measures of psychological symptoms, caregiver burden, and perceptions of social support. Repeated measures mixed models compared outcomes between groups and examined differences based on caregiver sex. Socioeconomic status (SES) was examined as a moderator of significant main effects. RESULTS: Caregivers of PBTS reported similar levels of psychological symptoms to caregivers of comparison youth. Mothers of PBTS mothers reported higher caregiver burden and lower perceptions of social support than mothers of comparison youth. Low SES exacerbated group differences in caregiver burden. CONCLUSIONS: Mothers of PBTS may have more caregiving responsibilities and perceive less social support, but reported similar levels of psychological symptoms to comparison mothers; fathers of PBTS were similar to comparison fathers. The mechanisms involved in this complex psychosocial dynamic require further investigation.
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