Autism spectrum disorder: family quality of life while waiting for intervention services

Abstract

Purpose

Families of children with autism spectrum disorder (ASD) often experience high levels of stress; it is important to investigate the family quality of life (FQOL) to understand how to serve the entire family, not just the child. The purpose of this investigation was to determine: (a) how families with a child with ASD view their overall FQOL and (b) what aspects of everyday life have the greatest influence on the FQOL?

Methods

A survey designed to asses FQOL was mailed to all families (n = 454) of children with ASD (0–18 years) waiting for government-funded services. Results from 151 surveys were examined (31 % response rate). Descriptive on all variables, ordinal logistic regression, and t tests were used to analyze the data.

Results

The most influential factors on FQOL were whether the child with ASD had a major health concern, whether the family’s needs were met by disability-related services, and whether there were opportunities to engage in leisure and recreation activities.

Conclusions

Families on waitlists experience challenges in FQOL influenced by the health of the family members; this is implicitly important for service agencies and providers. Future research should continue to explore how access to disability-related services impacts FQOL; and how these associations may be moderated by contextual factors such as socioeconomic status, health of child and family members, access and engagement in recreation, and severity of the child’s needs.

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Acknowledgments

The authors would like to thank Jacqueline Mangal for her assistance in preparing the mail out and with data entry. We would also like to thank the families who participated for taking the time to fill out the study questionnaires, as well as the service partners in the program: Grandview Children’s Centre, Lake Ridge Community Support Services, and Resources for Exceptional Children and Youth—Durham. The ABA services the families were waiting for are funded by the Ontario Ministry of Children and Youth Services.

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Correspondence to Meghann Lloyd.

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Ethical standard

Research ethics approval was granted for all program evaluation initiatives as part of this government-funded program and all families participating in the program provided informed consent for program evaluation data to be used for research purposes.

Conflict of interest

There are no conflicts of interest to report.

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Jones, S., Bremer, E. & Lloyd, M. Autism spectrum disorder: family quality of life while waiting for intervention services. Qual Life Res 26, 331–342 (2017). https://doi.org/10.1007/s11136-016-1382-7

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Keywords

  • Autism spectrum disorder
  • Family quality of life
  • Waitlist
  • Disability-related services
  • Recreation