Stress and coping in parents of children with Prader-Willi syndrome: Assessment of the impact of a structured plan of care

American Journal of Medical Genetics. Part a
Tatiana TvrdikDavid A Stevenson

Abstract

Hyperphagia, developmental delays, and maladaptive behaviors are common in Prader-Willi syndrome (PWS) likely resulting in heightened parental stress. Objectives were to evaluate stress, describe usefulness of coping behaviors, and assess the impact of a structured Plan of Care (PC) on parents with children with PWS. Parents answered Perceived Stress Scale (PSS-14), Coping Health Inventory for Parents (CHIP), and narrative/demographic surveys. The PC was introduced to a cohort of parents after completion of the PSS-14 and CHIP and re-administered 4-6 month after the introduction of the PC. Higher parental stress (n = 57) was observed compared to the general population, and associated with parent's age, number of children living at home, and child's age and residential setting. "Maintaining family integration, cooperation, and an optimistic definition of the situation" was the most useful coping pattern. Thirty-eight parents answered the PSS-14 and CHIP after the PC. Parental stress decreased after the PC (P = 0.035). Coping behaviors related to "maintaining family integration" increased after the PC (P = 0.042). Women and men preferred different coping patterns before and after the PC. In conclusion, parental stress is increase...Continue Reading

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Citations

Feb 18, 2016·Journal of Autism and Developmental Disorders·Carolyn M ShiversElisabeth M Dykens
Dec 2, 2017·Journal of Autism and Developmental Disorders·Yuka MoriHelen Leonard
May 13, 2019·Archives of Disease in Childhood·Kirstyn ChurchVanessa Halliday
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Apr 21, 2020·Health and Quality of Life Outcomes·Filiberto Toledano-ToledanoDavid Luna
Dec 31, 2020·Acta Paediatrica·Christina MeadeEdna Roche

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