Literature DB >> 32579286

'That thing in his head': Aboriginal and non-Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses.

Sharynne L Hamilton1,2, Sarah Maslen3, Rochelle Watkins1, Katherine Conigrave4, Jacinta Freeman1, Melissa O'Donnell1,2, Raewyn C Mutch1,2, Carol Bower1,2.   

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 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.
© 2020 Foundation for the Sociology of Health & Illness.

Entities:  

Keywords:  Aboriginal; caregivers; cultural understanding; neurodevelopmental disability; sociology of diagnosis

Year:  2020        PMID: 32579286     DOI: 10.1111/1467-9566.13146

Source DB:  PubMed          Journal:  Sociol Health Illn        ISSN: 0141-9889


  3 in total

1.  Key Stakeholder Priorities for the Review and Update of the Australian Guide to Diagnosis of Fetal Alcohol Spectrum Disorder: A Qualitative Descriptive Study.

Authors:  Nicole Hayes; Lisa K Akison; Sarah Goldsbury; Nicole Hewlett; Elizabeth J Elliott; Amy Finlay-Jones; Dianne C Shanley; Kerryn Bagley; Andi Crawford; Haydn Till; Alison Crichton; Rowena Friend; Karen M Moritz; Raewyn Mutch; Sophie Harrington; Andrew Webster; Natasha Reid
Journal:  Int J Environ Res Public Health       Date:  2022-05-10       Impact factor: 4.614

2.  Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder.

Authors:  Katherine Flannigan; Jacqueline Pei; Kaitlyn McLachlan; Kelly Harding; Mansfield Mela; Jocelynn Cook; Dorothy Badry; Audrey McFarlane
Journal:  Front Psychol       Date:  2022-01-25

Review 3.  Decolonising qualitative research with respectful, reciprocal, and responsible research practice: a narrative review of the application of Yarning method in qualitative Aboriginal and Torres Strait Islander health research.

Authors:  Michelle Kennedy; Raglan Maddox; Kade Booth; Sian Maidment; Catherine Chamberlain; Dawn Bessarab
Journal:  Int J Equity Health       Date:  2022-09-13
  3 in total

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