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A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma

2016; Wiley; Volume: 64; Issue: 4 Linguagem: Inglês

10.1002/pbc.26279

1545-5017

Victoria W. Willard, Ibrahim Qaddoumi, Hui Zhang, Lu Huang, Kathryn Russell, Rachel C. Brennan, Matthew W. Wilson, Carlos Rodríguez‐Galindo, Sean Phipps,

Family and Disability Support Research

Pediatric Blood & CancerVolume 64, Issue 4 e26279 RESEARCH ARTICLE A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma Victoria W. Willard, Corresponding Author Victoria W. Willard victoria.willard@stjude.org Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee Correspondence Victoria W. Willard, Department of Psychology, St. Jude Children's Research Hospital, MS 740, 262 Danny Thomas Place, Memphis, TN 38103. Email: victoria.willard@stjude.orgSearch for more papers by this authorIbrahim Qaddoumi, Ibrahim Qaddoumi Department of Oncology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorHui Zhang, Hui Zhang Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorLu Huang, Lu Huang Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorKathryn M. Russell, Kathryn M. Russell Department of Psychology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorRachel Brennan, Rachel Brennan Department of Oncology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorMatthew W. Wilson, Matthew W. Wilson Department of Surgery, St. Jude Children's Research Hospital, Memphis, Tennessee Department of Ophthalmology, University of Tennessee, Memphis, TennesseeSearch for more papers by this authorCarlos Rodriguez-Galindo, Carlos Rodriguez-Galindo Department of International Outreach, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorSean Phipps, Sean Phipps Department of Psychology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this author Victoria W. Willard, Corresponding Author Victoria W. Willard victoria.willard@stjude.org Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee Correspondence Victoria W. Willard, Department of Psychology, St. Jude Children's Research Hospital, MS 740, 262 Danny Thomas Place, Memphis, TN 38103. Email: victoria.willard@stjude.orgSearch for more papers by this authorIbrahim Qaddoumi, Ibrahim Qaddoumi Department of Oncology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorHui Zhang, Hui Zhang Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorLu Huang, Lu Huang Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorKathryn M. Russell, Kathryn M. Russell Department of Psychology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorRachel Brennan, Rachel Brennan Department of Oncology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorMatthew W. Wilson, Matthew W. Wilson Department of Surgery, St. Jude Children's Research Hospital, Memphis, Tennessee Department of Ophthalmology, University of Tennessee, Memphis, TennesseeSearch for more papers by this authorCarlos Rodriguez-Galindo, Carlos Rodriguez-Galindo Department of International Outreach, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this authorSean Phipps, Sean Phipps Department of Psychology, St. Jude Children's Research Hospital, Memphis, TennesseeSearch for more papers by this author First published: 03 November 2016 https://doi.org/10.1002/pbc.26279Citations: 10Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract Background Retinoblastoma is typically diagnosed in young children and may present unique parenting challenges. Qualitative research suggests that parents experience distress related to the initial diagnosis and treatment that subsequently resolves. The objectives were to systematically assess parenting stress over time in parents of young children with retinoblastoma and to examine associations between parenting stress and child outcomes. Procedures Parents of children with retinoblastoma completed the Parenting Stress Index (PSI) during serial psychological assessments scheduled based on the child's age (6 months to 5 years). Caregivers of 92 patients (85.9% mothers) completed the assessments. Child outcomes included developmental functioning and parent-reported adaptive functioning. Results At baseline and age 5, all subscales on the PSI were within normal limits, and most were significantly below normative means (i.e., demonstrating low levels of stress). All domains remained relatively stable over time. Associations between parenting stress and child outcomes were much stronger at age 5 than at baseline. Child-directed parenting stress was a small but significant contributor to declines in child functioning over time. Conclusions Parents of children with retinoblastoma report normal levels of parenting stress while their children are young. However, baseline parenting stress appears to contribute to changes in child functioning over time. Future studies should assess illness-related aspects of adjustment to further understand the parenting experience of young children with cancer and/or having a visually impaired child. Citing Literature Volume64, Issue4April 2017e26279 RelatedInformation