TY - JOUR
T1 - ‘That thing in his head’: Aboriginal and non-Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses
AU - Hamilton, Sharynne
AU - Maslen, Sarah
AU - Watkins, Rochelle
AU - Conigrave, Katherine
AU - Jacinta, Freeman
AU - O'Donnell, Melissa
AU - Mutch, Raewyn
AU - Bower, Carol
N1 - Funding Information:
This research is funded by the National Health and Medical Research Council (#APP1072072) and supported by the NHMRC Reducing the Effects of Antenatal Alcohol on Child Health Centre of Research Excellence (#1110341). SLH is supported by an Australian Government Research Training Program Scholarship, the Peter and Ann Hector Award, the FASD Research Australia Centre of Research Excellence and the Centre of Research Excellence Indigenous Health and Alcohol, University of Sydney (NHMRC #APP1117198). KC is supported by an NHMRC Practitioner Fellowship (APP1117582). The authors thank all the parents and family members who have contributed their knowledge and views of the research. We thank the professionals in the community who provided vital support to the research and to the young people and their families during the research. The authors thank all at Banksia Hill Detention Centre, the study team, the members of the Consumer and Community Reference Group, the Steering Group and the studies Chief Investigators and Associate Investigators. SLH thanks the Elder Co-researchers with the Ngulluk Koolunga Ngulluk Koort (Our Children, Our Heart) Project, Telethon Kids Institute for sharing their knowledge and wisdom and for their contribution to the interpretation of the data from this research.
Funding Information:
This research is funded by the National Health and Medical Research Council (#APP1072072) and supported by the NHMRC Reducing the Effects of Antenatal Alcohol on Child Health Centre of Research Excellence (#1110341). SLH is supported by an Australian Government Research Training Program Scholarship, the Peter and Ann Hector Award, the FASD Research Australia Centre of Research Excellence and the Centre of Research Excellence Indigenous Health and Alcohol, University of Sydney (NHMRC #APP1117198). KC is supported by an NHMRC Practitioner Fellowship (APP1117582).
Publisher Copyright:
© 2020 Foundation for the Sociology of Health & Illness
PY - 2020/9/1
Y1 - 2020/9/1
N2 - 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 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.
AB - 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 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.
KW - Sociology of diagnosis
KW - Aboriginal
KW - caregivers
KW - cultural understanding
KW - neurodevelopmental disability
UR - http://www.scopus.com/inward/record.url?scp=85087296435&partnerID=8YFLogxK
U2 - 10.1111/1467-9566.13146
DO - 10.1111/1467-9566.13146
M3 - Article
SN - 0141-9889
VL - 42
SP - 1581
EP - 1596
JO - Sociology of Health and Illness
JF - Sociology of Health and Illness
IS - 7
ER -