Unhappy (and happy) in their own way: a developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism.
Add resilience questions to family assessments, not just stress ones.
01Research in Context
What this study did
Gardiner et al. (2012) wrote a narrative review. They asked how families of children with developmental disabilities view quality of life.
The authors argued that most studies only look at stress and deficits. They wanted researchers to also measure resilience and adaptation.
What they found
The paper is conceptual. It does not report new data.
The team concluded that future family QoL research must include strength-based measures alongside problem-focused ones.
How this fits with other research
Rodríguez-Martínez et al. (2020) later ran a meta-analysis. They found that social support strongly predicts caregiver resilience. This backs the target paper’s call to measure resilience.
Widyawati et al. (2021) showed that positive parenting links parental resilience to child QoL. This moves the target idea from theory to a testable pathway.
Yamashiro et al. (2019) interviewed parents and listed autism-specific QoL domains the target paper missed, such as social desire and routine consistency.
Cavallaro et al. (2025) mapped the entire QoL literature. Their 2025 scoping review now subsumes the 2012 framework, showing family systems as an emerging theme.
Why it matters
When you update intake packets, add a brief resilience scale next to stress measures. Ask caregivers what strengths help them cope each week. This small shift captures the full family picture and guides better support plans.
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02At a glance
03Original abstract
Research on families living with developmental disability generally and autism specifically is dominated by a deficit view that elicits an elaborate representation of problems and risks without the benefit of considering families' potential for adaptation and resilience. A central tenet of developmental psychopathology is that the study of adaptive and maladaptive development is mutually informative. Specifically, one can examine resilience within the context of adversity and the multiple processes and pathways to adaptive and maladaptive developmental outcomes. We believe these concepts can also be extended to the study of families living with developmental disability as they transition through the family lifecycle. This paper provides an overview of the family quality of life (FQOL) construct, including its conceptualization and measurement, and a review of studies on FQOL among families of children with various developmental disabilities. Special attention is given to families of children with autism, as this is a circumstance characterized by unique adversity. We suggest benefits from adopting a developmental psychopathology perspective, and illustrate how relevant concepts can inform our methodologies as we move forward. We will demonstrate how such an integrated, systemic, and temporal approach will help generate more refined questions on FQOL among families caring for a child with developmental disability in order to provide the specific answers needed to directly inform policy and clinical practice.
Research in developmental disabilities, 2012 · doi:10.1016/j.ridd.2012.06.014