This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder-affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder-affected children require early, broad intervention strategies that positively impact the whole family.
Discrimination against Asians and Asian Americans increased during the COVID-19 pandemic. Yet, even prior to the pandemic, little research explored the experiences of Asian American families of children with autism and other developmental disabilities. This brief report summarizes the results of a survey conducted between May and July 2020, in the immediate aftermath of state and local lockdowns due to the pandemic. Twenty-five Asian American caregivers of children with autism and other developmental disabilities completed the survey and reported on the pandemic’s impact on their household. Most of the caregivers were mothers, immigrants, Chinese, raising children with autism, and highly educated. Participants’ primary concerns were the disruption of their children’s educational and therapeutic services. We discuss research limitations and implications.
Objective:This study examined the short-term impact on child, family, and parent outcomes of a peer-to-peer psychoeducational intervention, Parents Taking Action (PTA) for Black families of children awaiting developmental-behavioral pediatric evaluations.Methods:We targeted parents and other primary caregivers of Black children aged 8 years or younger awaiting a developmental or autism evaluation at an academic tertiary care hospital. Using a single-arm design, we recruited participants directly from the appointment waitlist and used flyers in local pediatric and subspecialty clinics. Eligible participants received a version of PTA adapted for Black children in two 6-week modules delivered synchronously online. In addition to initial baseline demographic data, we collected 4 standardized measures of parent stress and depression, family outcomes (e.g., advocacy), and child behavior at preintervention, midintervention, and postintervention. We calculated effect sizes and used linear mixed models to examine changes over time.Results:Fifteen participants completed PTA, the majority of whom were Black mothers with annual household incomes <$50,000. All children were Black and mostly boys, with an average age of 4.6 years. Parent depression, the family outcome total score, and 3 family outcomes (understanding child's strengths, needs, and abilities; knowing rights and advocating for child; and helping child develop and learn) significantly improved pre-post intervention, with medium to large effect sizes. Furthermore, the family outcome total score and “knowing rights and advocating for child” outcome significantly increased by midintervention (d = 0.62–0.80).Conclusion:Peer-delivered interventions can result in positive outcomes for families awaiting diagnostic evaluations. Further research is needed to confirm findings.
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