Understanding Family Quality of Life in Autism Spectrum Disorder: A Mixed Method Study

Overview of Family Quality of Life in Autism Spectrum Disorder (ASD)

Having a child with Autism Spectrum Disorder (ASD) significantly impacts family dynamics, often necessitating a renegotiation of roles and relationships. This research, conducted at SFU in the Autism and Developmental Disorders Lab, delves into the multifaceted concept of family quality of life (FQoL) among families with children with ASD in British Columbia, employing a mixed method approach to understand the elements of risk and resilience affecting these families.

The Construct of Family Quality of Life

Family Quality of Life (FQoL) is a construct designed to capture the multi-dimensional and dynamic nature of family functioning. It encompasses both the satisfaction with, and the frequency of participation in, important family activities. This construct is integral for understanding how families adapt to having a member with a disability, moving beyond traditional measures of dysfunction to include positive outcomes.

Key Concepts:

• Subjective and Objective Elements: Includes both tangible participation and satisfaction levels.
• Dynamic Nature: Understanding that FQoL is ever-changing over time.
• Family and Individual Oriented Items: Considers impacts on both the individual with a disability and the broader family system.
• Multi-Dimensional: Takes into account various domains of family life, ensuring a holistic view.

Mixed Method Study Design

The study aimed to explore FQoL through both quantitative and qualitative lenses, examining the role of risk factors like child behavior, protective family factors, and detailed family experiences through follow-up interviews. This approach allowed for a comprehensive understanding of the variables at play.

Research Findings:

1. Risk Factors: Child behavior problems and impaired adaptive functioning were identified as significant risk factors for FQoL, with daily living skills emerging as a particularly impactful area.

2. Resilience: Family resilience, as characterized by belief systems, communication patterns, and organizational structures, played a crucial role in maintaining or enhancing FQoL.

3. Qualitative Insights: Follow-up interviews provided nuanced perspectives on the challenges and strengths families face, highlighting the importance of support systems and the unique consequences of having a child with ASD.

Planned Extensions and Implications

The research underscores the necessity of tailored interventions targeting daily living skills and the importance of fostering resilience through positive family dynamics. Insights from this study can guide practitioners in supporting families of children with ASD more effectively, advocating for policy revisions to address service delivery concerns, and ensuring a more inclusive understanding of FQoL across diverse family contexts.

Conclusion

This mixed method study offers a profound look into the complexities of family life when navigating the challenges and rewards of raising a child with ASD. It emphasizes the significance of a holistic, multi-dimensional approach to supporting these families, recognizing the importance of both addressing risk factors and bolstering resilience to enhance family quality of life.

For more detailed insights and to understand the methodology behind this study, check the original video here.