The quality of life of children with severe developmental disabilities

BACKGROUND Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. METHOD Parents of 246 children with SDD (aged 4 to 19 years) and 210 TD children (aged 4 to 18 years) responded to an online survey. QoL was measured using a composite variable composed of the child's happiness, achievement of potential and friendship quality. RESULTS Children with DD had lower QoL ratings than TD children. In children with DD, higher QoL was related to younger age, higher adaptive skills, lower maladaptive behaviour, lower parent psychological distress and higher satisfaction with the child's education. CONCLUSIONS Interventions to promote positive outcomes for children with SDD should target both characteristics of the individual and the environment.

[1]  H. Sigstad Significance of friendship for quality of life in adolescents with mild intellectual disability: A parental perspective† , 2016 .

[2]  C. Neece,et al.  Interventions for Parents of People with Intellectual Disabilities , 2016, Current Developmental Disorders Reports.

[3]  J. Weiss,et al.  The GO4KIDDS Brief Adaptive Scale. , 2015, Journal of applied research in intellectual disabilities : JARID.

[4]  Y. Lunsky,et al.  Empowerment and Parent Gain as Mediators and Moderators of Distress in Mothers of Children with Autism Spectrum Disorders , 2015 .

[5]  R. Hastings,et al.  Prosocial skills in young children with autism, and their mothers’ psychological well-being: Longitudinal relationships , 2015 .

[6]  Roy I. Brown,et al.  Quality of life and social inclusion across the lifespan: challenges and recommendations , 2015 .

[7]  C. Neece,et al.  Mindfulness-based stress reduction for parents of young children with developmental delays: implications for parental mental health and child behavior problems. , 2014, Journal of applied research in intellectual disabilities : JARID.

[8]  B. Gasteiger-Klicpera,et al.  Attitudes and experiences of parents regarding inclusive and special school education for children with learning and intellectual disabilities , 2013 .

[9]  Liat Sayfan,et al.  Do you know how I feel? Parents underestimate worry and overestimate optimism compared to child self-report. , 2012, Journal of experimental child psychology.

[10]  C. Hawes,et al.  Severity of children's intellectual disabilities and Medicaid personal care services. , 2011, Rehabilitation psychology.

[11]  D. Pogge,et al.  Parent–Child Discrepancies in Report of Psychopathology: The Contributions of Response Bias and Parenting Stress , 2011, Journal of personality assessment.

[12]  J. Cramm,et al.  Longitudinal study of parents' impact on quality of life of children and young adults with intellectual disabilities. , 2011, Journal of applied research in intellectual disabilities : JARID.

[13]  W. Van den Noortgate,et al.  What makes them feel like they do? Investigating the subjective well-being in people with severe and profound disabilities. , 2010, Research in developmental disabilities.

[14]  Patricia Baldwin,et al.  The Importance of Self-Determination to Perceived Quality of Life for Youth and Young Adults With Chronic Conditions and Disabilities , 2010 .

[15]  S. Beyer,et al.  A Comparison of Quality of Life Outcomes for People with Intellectual Disabilities in Supported Employment, Day Services and Employment Enterprises. , 2010 .

[16]  C. Hatton,et al.  Poverty and the mental health of families with a child with intellectual disabilities , 2009 .

[17]  A. Staines,et al.  Self-rated health and quality of life in adults attending regional disability services in Ireland. , 2009, Disability and health journal.

[18]  John Done,et al.  Peer victimisation and internalising difficulties: The moderating role of friendship quality. , 2009, Journal of adolescence.

[19]  R. Schalock,et al.  Quality of Life: Its Application to Persons With Intellectual Disabilities and Their Families—Introduction and Overview , 2009 .

[20]  L. Jensen‐Campbell,et al.  With a Little Help from Your Friends: The Importance of High-quality Friendships on Early Adolescent Adjustment , 2008 .

[21]  M. Law,et al.  Determinants of life quality in school-age children with cerebral palsy. , 2007, The Journal of pediatrics.

[22]  C. Vlaskamp,et al.  Operationalizing quality of life for people with profound multiple disabilities: a Delphi study. , 2007, Journal of intellectual disability research : JIDR.

[23]  J. Blacher,et al.  Preschool children with intellectual disability: syndrome specificity, behaviour problems, and maternal well-being. , 2005, Journal of intellectual disability research : JIDR.

[24]  J. Blacher,et al.  Quality of life for young adults with severe intellectual disability: mothers’ thoughts and reflections , 2004 .

[25]  R. Kessler,et al.  Screening for serious mental illness in the general population with the K6 screening scale: results from the WHO World Mental Health (WMH) survey initiative , 2003, Archives of general psychiatry.

[26]  R. Waugh,et al.  Regular teachers’ attitudes to the need for additional classroom support for the inclusion of students with intellectual disability , 2001 .

[27]  R. A. Dodder,et al.  The Relationship of Adaptive and Maladaptive Behaviour to Social Outcomes for Individuals with Developmental Disabilities , 2000 .

[28]  J. Matson,et al.  Treating adaptive living skills of persons with autism using applied behavior analysis: A review , 2012 .

[29]  R. Hastings,et al.  Psychological Acceptance Mediates the Impact of the Behaviour Problems of Children with Intellectual Disability on Fathers’ Psychological Adjustment , 2010 .

[30]  Toby L. Martin,et al.  Happiness Indices among Persons with Profound and Severe Disabilities during Leisure and Work Activities: A Comparison. , 2002 .

[31]  D. Felce,et al.  Quality of life: its definition and measurement. , 1995, Research in developmental disabilities.