Telethon Kids Institute, The University of Western Australia, Perth, WA, Australia.
School of Paediatrics and Child Health, The University of Western Australia, Perth, WA, Australia.
Sociol Health Illn. 2020 Sep;42(7):1581-1596. doi: 10.1111/1467-9566.13146. Epub 2020 Jun 24.
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.
对于文化差异对照顾者接受神经发育障碍诊断的意义，人们知之甚少。作为在被判刑和被拘留的青年中进行胎儿酒精谱系障碍流行程度研究的一部分，我们的定性研究探讨了被拘留的年轻人及其照顾者在接受诊断评估方面的经历。我们从照顾者的角度介绍了研究结果。通过与诊断社会学文献的对话，我们呈现了三位原住民和两位非原住民照顾者经历诊断评估过程的三个情景。我们发现，原住民照顾者将他们孩子的诊断和持续管理置于其家庭网络和社区的背景下。相比之下，非原住民照顾者则关注诊断将如何影响他们的孩子以及与各种机构的互动，包括医疗保健系统和学校。照顾者对诊断报告和资源的参与也遵循文化路线。原住民照顾者反思了代际饮酒问题，他们对接受诊断表示羞愧。这些发现增进了我们对接受诊断方面文化差异的理解，而对这种差异的研究还处于起步阶段。我们还提出了减轻由污名化诊断带来的伤害以及减轻医学主导地位对定义一个人的能力和地位过程的既定影响的方法。
