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Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.

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Title: Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.
Authors: Traino, Katherine A1 (AUTHOR) katie.traino@okstate.edu, Ciciolla, Lucia M1 (AUTHOR), Perez, Megan N2 (AUTHOR), Chaney, John M1 (AUTHOR), Welch, Ginger3 (AUTHOR), Baskin, Laurence S4 (AUTHOR), Buchanan, Cindy L5 (AUTHOR), Chan, Yee-Ming6 (AUTHOR), Cheng, Earl Y7 (AUTHOR), Coplen, Douglas E8 (AUTHOR), Wisniewski, Amy B1 (AUTHOR), Mullins, Larry L1 (AUTHOR)
Source: Journal of Pediatric Psychology. Aug2024, Vol. 49 Issue 8, p559-570. 12p.
Subject Terms: *Parent attitudes, *Exceptional children, *Child development, Sexual dimorphism, Disease progression
Abstract: Objective The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. Methods Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. Results A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. Conclusions Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Pediatric Psychology is the property of Oxford University Press / USA and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.
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  Data: <searchLink fieldCode="AR" term="%22Traino%2C+Katherine+A%22">Traino, Katherine A</searchLink><relatesTo>1</relatesTo> (AUTHOR)<i> katie.traino@okstate.edu</i><br /><searchLink fieldCode="AR" term="%22Ciciolla%2C+Lucia+M%22">Ciciolla, Lucia M</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Perez%2C+Megan+N%22">Perez, Megan N</searchLink><relatesTo>2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Chaney%2C+John+M%22">Chaney, John M</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Welch%2C+Ginger%22">Welch, Ginger</searchLink><relatesTo>3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Baskin%2C+Laurence+S%22">Baskin, Laurence S</searchLink><relatesTo>4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Buchanan%2C+Cindy+L%22">Buchanan, Cindy L</searchLink><relatesTo>5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Chan%2C+Yee-Ming%22">Chan, Yee-Ming</searchLink><relatesTo>6</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Cheng%2C+Earl+Y%22">Cheng, Earl Y</searchLink><relatesTo>7</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Coplen%2C+Douglas+E%22">Coplen, Douglas E</searchLink><relatesTo>8</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Wisniewski%2C+Amy+B%22">Wisniewski, Amy B</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Mullins%2C+Larry+L%22">Mullins, Larry L</searchLink><relatesTo>1</relatesTo> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Pediatric+Psychology%22">Journal of Pediatric Psychology</searchLink>. Aug2024, Vol. 49 Issue 8, p559-570. 12p.
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  Data: *<searchLink fieldCode="DE" term="%22Parent+attitudes%22">Parent attitudes</searchLink><br />*<searchLink fieldCode="DE" term="%22Exceptional+children%22">Exceptional children</searchLink><br />*<searchLink fieldCode="DE" term="%22Child+development%22">Child development</searchLink><br /><searchLink fieldCode="DE" term="%22Sexual+dimorphism%22">Sexual dimorphism</searchLink><br /><searchLink fieldCode="DE" term="%22Disease+progression%22">Disease progression</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Objective The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. Methods Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. Results A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. Conclusions Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Pediatric Psychology is the property of Oxford University Press / USA and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1093/jpepsy/jsae043
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        Text: English
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      – SubjectFull: Parent attitudes
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