TY - JOUR
T1 - It’s a Battle and a Blessing
T2 - The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder
AU - Hillman, Jennifer L.
AU - Anderson, Connie M.
PY - 2019/1/15
Y1 - 2019/1/15
N2 - We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their “greatest challenges and joys” as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents’ stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents’ coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents’ wisdom included patience and insight. Recommendations to support these caregivers are provided.
AB - We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their “greatest challenges and joys” as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents’ stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents’ coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents’ wisdom included patience and insight. Recommendations to support these caregivers are provided.
UR - http://www.scopus.com/inward/record.url?scp=85054188914&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85054188914&partnerID=8YFLogxK
U2 - 10.1007/s10803-018-3761-0
DO - 10.1007/s10803-018-3761-0
M3 - Article
C2 - 30267251
AN - SCOPUS:85054188914
SN - 0162-3257
VL - 49
SP - 260
EP - 269
JO - Journal of Autism and Developmental Disorders
JF - Journal of Autism and Developmental Disorders
IS - 1
ER -