TY - JOUR
T1 - Family Quality of Life in Children with Severe or Profound Disability
T2 - Home Versus Residential Care
AU - Karni-Visel, Yael
AU - Nasser, Kareem
AU - Manishevitch, Hofit
AU - Akrt, Sahar
AU - Schertz, Mitchell
N1 - Publisher Copyright:
© 2023 Lippincott Williams and Wilkins. All rights reserved.
PY - 2023/1/1
Y1 - 2023/1/1
N2 - Background:Most children with severe and profound intellectual disability (SPID) are cared for in their homes, according to current recommendations. Yet, their families face marked emotional, health, and economic challenges.Aims:The aim of this study was to examine family quality of life (FQOL) along with psychological and health factors among families who raise children with SPID at home versus those residing in residential care.Methods:Sixty caregivers of children aged 2 to 18 years (M = 8.81, SD = 4.62) with SPID (developmental quotient/intellectual quotient <35), living at home (38 caregivers - "home group") or in residential care (22 caregivers - "residential group"), completed the FQOL Survey, Beck Depression Inventory, Parental Stress Index, Shame and Guilt Scale, and Health and Demographic questionnaires.Results:FQOL for most domains and dimensions was rated better among families whose child resides in residential care compared with families who raise their child at home. Similarly, parental stress relating to the child was worse among families who raise their children at home. No significant differences between the 2 groups were noted on other psychological or health measures.Conclusion:Family and individual needs for those raising a child with SPID at home should be addressed when planning policy and interventions.
AB - Background:Most children with severe and profound intellectual disability (SPID) are cared for in their homes, according to current recommendations. Yet, their families face marked emotional, health, and economic challenges.Aims:The aim of this study was to examine family quality of life (FQOL) along with psychological and health factors among families who raise children with SPID at home versus those residing in residential care.Methods:Sixty caregivers of children aged 2 to 18 years (M = 8.81, SD = 4.62) with SPID (developmental quotient/intellectual quotient <35), living at home (38 caregivers - "home group") or in residential care (22 caregivers - "residential group"), completed the FQOL Survey, Beck Depression Inventory, Parental Stress Index, Shame and Guilt Scale, and Health and Demographic questionnaires.Results:FQOL for most domains and dimensions was rated better among families whose child resides in residential care compared with families who raise their child at home. Similarly, parental stress relating to the child was worse among families who raise their children at home. No significant differences between the 2 groups were noted on other psychological or health measures.Conclusion:Family and individual needs for those raising a child with SPID at home should be addressed when planning policy and interventions.
KW - family quality of life
KW - intellectual disabilities
KW - mental health
KW - residential care
UR - http://www.scopus.com/inward/record.url?scp=85144635474&partnerID=8YFLogxK
U2 - 10.1097/DBP.0000000000001138
DO - 10.1097/DBP.0000000000001138
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C2 - 36563344
AN - SCOPUS:85144635474
SN - 0196-206X
VL - 44
SP - E32-E40
JO - Journal of Developmental and Behavioral Pediatrics
JF - Journal of Developmental and Behavioral Pediatrics
IS - 1
ER -