'That thing in his head': Aboriginal and non-Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses
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Open Access
Type
ArticleAuthor/s
Hamilton, SharynneMaslen, Sarah
Watkins, Rochelle
Conigrave, Katherine
Freeman, Jacinta
O'Donnell, Melissa
Mutch, Raewyn
Bower, Carol
Abstract
Little is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of ...
See moreLittle is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers’ experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children’s diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers’ engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person’s capacity and status.
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See moreLittle is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers’ experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children’s diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers’ engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person’s capacity and status.
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Date
2020Source title
Sociology of Health & IllnessVolume
42Issue
7Publisher
WileyLicence
Creative Commons Attribution-NonCommercial-NoDerivatives 4.0Rights statement
This is the peer reviewed version of the following article: Hamilton, S. L., Maslen, S., Watkins, R., Conigrave, K., Freeman, J., O’Donnell, M., ... & Bower, C. (2020). ‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses. Sociology of Health & Illness, 42(7), 1581-1596., which has been published in final form at [Link to final article using the https://doi.org/10.1111/1467-9566.13146. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. This article may not be enhanced, enriched or otherwise transformed into a derivative work, without express permission from Wiley or by statutory rights under applicable legislation. Copyright notices must not be removed, obscured or modified. The article must be linked to Wiley’s version of record on Wiley Online Library and any embedding, framing or otherwise making available the article or pages thereof by third parties from platforms, services and websites other than Wiley Online Library must be prohibited.Faculty/School
Faculty of Medicine and HealthDepartment, Discipline or Centre
Central Clinical SchoolShare