Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person‐ and family‐centered care. To date, reviews have focused broadly on the experiences of living with FASD. The aim of this systematic review is to synthesize qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINAH, EMBASE, PsycINFO, and Web of Science Core Collection were searched from inception until February 2021, and updated in December 2022. A manual search of reference lists of included studies identified additional studies for inclusion. The quality of included studies was assessed using the Critical Appraisal Skills Program Checklist for Qualitative Studies. Data from included studies were synthesized using a thematic analysis approach. GRADE‐CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria for inclusion in the review. Thematic analysis identified 10 first‐level themes relating to four over‐arching topics: (1) pre‐assessment concerns and challenges, (2) the diagnostic assessment process, (3) receipt of the diagnosis, and (4) post‐assessment adaptations and needs. GRADE‐CERQual confidence ratings for each of the review themes were moderate to high. The findings from this review have implications for referral pathways, client‐centered assessment processes, and post‐diagnostic recommendations and support.
Aboriginal culture intuitively embodies and interconnects the threads of life that are known to be intrinsic to human wellbeing: connection. Therefore, Aboriginal wisdom and practices are inherently strengths-based and healing-informed. Underpinned by an Indigenist research methodology, this article presents findings from a collaboration of Aboriginal and non-Aboriginal peoples to develop an Australian Fetal Alcohol Spectrum Disorder (FASD) Indigenous Framework during 2021 to 2023. The FASD Indigenous Framework unfolds the changes that non-Aboriginal clinicians and Aboriginal peoples each need to make in their respective ways of knowing, being and doing in order to facilitate access to healing-informed, strengths-based and culturally responsive FASD knowledge, assessment, diagnosis and support services among Aboriginal peoples. Drawing on the Aboriginal practices of yarning and Dadirri, written and oral knowledges were gathered. These knowledges were mapped against Aboriginal cultural responsiveness and wellbeing frameworks and collaboratively and iteratively reflected upon throughout. This article brings together Aboriginal wisdom (strengths-based, healing-informed approaches grounded in holistic and integrated support) and Western wisdom (biomedicine and therapeutic models) in relation to FASD. From a place of still awareness (Dadirri), both forms of wisdom were drawn upon to create Australia’s first FASD Indigenous Framework, a new practice in the assessment and diagnosis of FASD, which offers immense benefit to equity, justice, support and healing for Aboriginal families with a lived experience of FASD.
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