Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence.

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.

Factors to be considered as part of a holistic assessment for fetal alcohol spectrum disorder: A scoping review.

We undertook a scoping review to identify the factors outside of current fetal alcohol spectrum disorder (FASD) diagnostic criteria to be considered as part of a holistic assessment process. This included physical, social, cultural, mental health and wellbeing factors to inform targeted recommendations and supports to improve outcomes for individuals with FASD. Evidence from this review will be used to inform the revision of the Australian Guide to the Diagnosis of FASD. Six electronic databases were searched. Studies were eligible if they included factors outside of the diagnostic criteria that cover dysmorphology, growth restriction, neurodevelopmental impairments. Data charting and content analysis were performed to synthesize the results. One hundred twenty-one studies were included that spanned 12 key areas These included physical health, sleep, adverse postnatal experiences, substance use/other risk-taking behaviors, contact with the criminal justice system, mental health, First Nations cultural considerations, transition to adult roles, involvement with the out-of-home care system, feeding and eating, strengths/interests/external resources and incontinence. Areas to be considered as part of a holistic assessment and diagnostic process spanned individual, family, and system level factors. Results provide guidance for clinicians on the wide range of factors that could influence long-term health, development, and wellbeing for individuals with prenatal alcohol exposure and FASD. In practice, this guidance can be used to inform an individualized assessment process to facilitate tailored recommendations and supports to best meet the complex needs of individuals living with FASD and their families.

The Alcohol Industry and Social Responsibility: Links to FASD.

Fetal Alcohol Spectrum Disorder is directly linked to the consumption of alcohol during pregnancy. Prevention programs have been targeted at women of childbearing age and vulnerable populations. The beverage alcohol industry (manufacture, marketing, distribution, and retail) is often seen as playing a role in prevention strategies such as health warning labels. In this paper we explore the nature of the relationship between the industry and prevention programming. We consider the place of alcohol in society; the prevalence, social and economic costs of FASD; the ethical notion of alcohol-related harm and then move onto the question of public health partnerships with the industry including the potential conflicts of interests and ethical challenges in such partnerships.

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

Since the 2016 release of the Australian Guide to the Diagnosis of Fetal Alcohol Spectrum Disorder (FASD), considerable progress has been made in the identification and diagnosis of the disorder. As part of a larger process to review and update the Guide, the aim of this study was to identify review priorities from a broad range of stakeholders involved in the assessment and diagnosis of FASD. Sixty-two stakeholders, including healthcare practitioners, researchers, other specialists, individuals with cultural expertise, lived experience and consumer representatives completed an online survey asking them to describe up to five priorities for the review of the Australian Guide to the Diagnosis of FASD. A total of 267 priorities were described. Content analysis of responses revealed priority areas relating to diagnostic criteria (n = 82, 30.7%), guideline content (n = 91, 34.1%), guideline dissemination (n = 15, 5.6%) and guideline implementation (n = 63, 23.6%). Other considerations included prevention and screening of FASD (n = 16, 6%). Engaging stakeholders in setting priorities will ensure the revised Australian Guide can be as relevant and meaningful as possible for the primary end-users and that it meets the needs of individuals with lived experience who will be most affected by the diagnosis.

Collaborative team approaches to supporting inclusion of children with disability in mainstream schools: A co-design study.

BACKGROUND: Collaborative consultation involving educational staff, allied health professionals and parents working towards goals for children with disability is considered best practice in inclusive education. However, challenges can hinder effective collaboration, thereby potentially limiting child outcomes. AIMS: The study aims were to (a) explore the experiences of teachers, teacher assistants, allied health professionals, and parents engaging in collaborative teamwork to support inclusion of children with disability in mainstream primary schools, and (b) identify key factors influencing effective teamwork and the design of support strategies. METHODS AND PROCEDURES: A co-design research method emulated collaborative consultation and authentic stakeholder teamwork. Data were from a series of six co-design workshops (15 h); discussions were audio-recorded and transcribed verbatim. An interpretive descriptive method of thematic analysis resulted in four key themes. OUTCOMES AND RESULTS: Critical factors that influenced collaborative teamwork were access to diagnosis and funding, mechanisms for team communications, practical ways of working together, and shared understandings of inclusion. CONCLUSIONS AND IMPLICATIONS: Stakeholder teams require effective communication mechanisms and practical ways of working together within and outside of classrooms. Shared understandings of inclusion provide a foundation for collaboration, requiring access to professional development to ensure teamwork is informed by best inclusive education practice.

How Personal Perspectives Shape Health Professionals' Perceptions of Fetal Alcohol Spectrum Disorder and Risk.

This article examines how health, allied health and social service professionals' personal perspectives about alcohol and the risks associated with alcohol consumption become non-clinical factors that may influence their professional practice responses in relation to fetal alcohol spectrum disorder (FASD). It presents findings derived from a qualitative, interview-based study of professionals from a range of health, allied health and social service professions in New Zealand. The data derived from these interviews revealed four frames of reference that practitioners use when thinking about alcohol and risk: reflection on personal experience; experiences of friends, relatives and colleagues; social constructions of alcohol use and misuse; and comparisons to other types of drug use. The article concludes that these non-clinical factors are important considerations in professional decision making about FASD.

Speech-language pathology intervention in a youth justice setting: Benefits perceived by staff extend beyond communication.

PURPOSE: Young people in youth justice (YJ) settings face high-risk for unidentified language disorder, however, speech-language pathology (SLP) services are not routinely offered in such settings. The aim of this study was to explore and describe the perceptions and experiences of YJ staff in a custodial centre of the utility of having a speech-language pathologist working with young offenders. METHOD: Following a SLP intervention trial, two staff focus groups were conducted by an independent SLP. Interview probes were developed through review of the literature and consultation with the practitioner who conducted the clinical intervention. Focus groups were digitally recorded for thematic analysis, which was carried out by the three authors independently. RESULT: YJ staff expressed consistently positive views about the SLP intervention trial in their centre. Staff indicated that they learnt a great deal about the complexity of communication difficulties in this population, and that this information informed and guided their own practices. They expressed surprise at the engagement of young people in the SLP service, and supported its embedding in the YJ setting. CONCLUSION: YJ staff endorsed the value of a SLP service in a custodial setting. Further research should focus on refining measurement of this service and its impact.