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Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum

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Abstract

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism’s Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum.

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Acknowledgments

This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government's Cooperative Research Centres Program. The authors thank the following Autistic or Carer Advisors to the Australian Longitudinal Study of Adults with Autism for their contribution to the interpretation of our findings: Anne Masi, Chris Tanner, Cheryl Strangio, Joanne Mahony, Jen Harland, and Gabriel Nakhel.

Funding

The authors acknowledge the financial support of the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government's Cooperative Research Centres Program.

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Authors and Affiliations

  1. Department of Developmental Disability Neuropsychiatry (3DN), the UNSW Sydney, Sydney, NSW, Australia

    Marisse T. Sonido, Preeyaporn Srasuebkul, Julian N. Trollor & Samuel R. C. Arnold

  2. The Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, QLD, Australia

    Marisse T. Sonido, Julian N. Trollor & Samuel R. C. Arnold

  3. The Kirby Institute, the UNSW Sydney, Sydney, NSW, Australia

    Ye In Hwang

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  1. Marisse T. Sonido
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  2. Ye In Hwang
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Correspondence to Samuel R. C. Arnold.

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PS, JT, and SA are employed in a department which receives project investment from The Cooperative Research Centre for Living with Autism (Autism CRC).

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Sonido, M.T., Hwang, Y.I., Srasuebkul, P. et al. Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum. J Autism Dev Disord 52, 2997–3014 (2022). https://doi.org/10.1007/s10803-021-05178-3

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