Author
Listed:
- Kiah Evans
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
School of Allied Health, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia)
- Andrew J. O. Whitehouse
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia)
- Emily D’Arcy
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
School of Psychological Science, University of Western Australia, Perth 6009, Australia)
- Maya Hayden-Evans
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
School of Psychological Science, University of Western Australia, Perth 6009, Australia)
- Kerry Wallace
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia)
- Rebecca Kuzminski
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia)
- Rebecca Thorpe
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia)
- Sonya Girdler
(School of Allied Health, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
Karolinska Institutet Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 171 77 Stockholm, Sweden)
- Benjamin Milbourn
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia)
- Sven Bölte
(Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia
Karolinska Institutet Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women’s and Children’s Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 171 77 Stockholm, Sweden
Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm, 104 31 Stockholm, Sweden)
- Angela Chamberlain
(Telethon Kids Institute, University of Western Australia, Perth 6009, Australia
Autism CRC, Long Pocket, Brisbane 4068, Australia
Curtin Autism Research Group and School of Allied Health, Curtin University, Perth 6102, Australia)
Abstract
With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5–17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.
Suggested Citation
Kiah Evans & Andrew J. O. Whitehouse & Emily D’Arcy & Maya Hayden-Evans & Kerry Wallace & Rebecca Kuzminski & Rebecca Thorpe & Sonya Girdler & Benjamin Milbourn & Sven Bölte & Angela Chamberlain, 2022.
"Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers,"
IJERPH, MDPI, vol. 19(23), pages 1-24, November.
Handle:
RePEc:gam:jijerp:v:19:y:2022:i:23:p:15605-:d:982794
Download full text from publisher
References listed on IDEAS
- Miguel A. Verdugo & Virginia Aguayo & Victor B. Arias & Laura García-Domínguez, 2020.
"A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities,"
IJERPH, MDPI, vol. 17(24), pages 1-26, December.
- Maya Hayden-Evans & Benjamin Milbourn & Emily D’Arcy & Angela Chamberlain & Bahareh Afsharnejad & Kiah Evans & Andrew J. O. Whitehouse & Sven Bölte & Sonya Girdler, 2022.
"An Evaluation of the Overall Utility of Measures of Functioning Suitable for School-Aged Children on the Autism Spectrum: A Scoping Review,"
IJERPH, MDPI, vol. 19(21), pages 1-29, October.
- The-Hanh Pham & Jahmunah Vicnesh & Joel Koh En Wei & Shu Lih Oh & N. Arunkumar & Enas. W. Abdulhay & Edward J. Ciaccio & U. Rajendra Acharya, 2020.
"Autism Spectrum Disorder Diagnostic System Using HOS Bispectrum with EEG Signals,"
IJERPH, MDPI, vol. 17(3), pages 1-15, February.
Full references (including those not matched with items on IDEAS)
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