@article{9d96d8f66501438391a84b00c35acbea,
title = "Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study",
abstract = "Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1 year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference = 0.05, t(360) = 0.1, p = 0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population. Lay abstract: Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.",
keywords = "North America, adaptive functioning, autism, caregiver strain, parents",
author = "Lindly, {Olivia J.} and Shui, {Amy M.} and Stotts, {Noa M.} and Kuhlthau, {Karen A.}",
note = "Funding Information: The authors thank Christopher Moreno for his assistance with the data tables. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This Network activity was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks Autism Treatment Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration (HRSA), Health and Human Services (HHS), the US Government, or Autism Speaks. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health. Dr Lindly{\textquoteright}s effort was also supported by grant # T32HS000063 from the Agency for Healthcare Research and Quality and the Southwest Health Equity Research Collaborative at Northern Arizona University (U54MD012388), which is sponsored by the National Institute on Minority Health and Health Disparities (NIMHD). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This Network activity was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks Autism Treatment Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration (HRSA), Health and Human Services (HHS), the US Government, or Autism Speaks. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health. Dr Lindly{\textquoteright}s effort was also supported by grant # T32HS000063 from the Agency for Healthcare Research and Quality and the Southwest Health Equity Research Collaborative at Northern Arizona University (U54MD012388), which is sponsored by the National Institute on Minority Health and Health Disparities (NIMHD). Publisher Copyright: {\textcopyright} The Author(s) 2021.",
year = "2022",
month = aug,
doi = "10.1177/13623613211052108",
language = "English (US)",
volume = "26",
pages = "1460--1476",
journal = "Autism",
issn = "1362-3613",
publisher = "SAGE Publications Ltd",
number = "6",
}