Guidelines for identification and treatment of individuals with attention deficit/hyperactivity disorder and associated fetal alcohol spectrum disorders based upon expert consensus.

BACKGROUND: The association of attention deficit/hyperactivity disorder (ADHD) and fetal alcohol spectrum disorders (FASD) results in a complex constellation of symptoms that complicates the successful diagnosis and treatment of the affected individual. Current literature lacks formal guidelines, randomized control trials, and evidence-based treatment plans for individuals with ADHD and associated FASD. Therefore, a meeting of professional experts was organized with the aim of producing a consensus on identification and treatment guidelines that will aid clinicians in caring for this unique patient population. METHODS: Experts from multiple disciplines in the fields of ADHD and FASD convened in London, United Kingdom, for a meeting hosted by the United Kingdom ADHD Partnership (UKAP; www.UKADHD.com ) in June 2015. The meeting provided the opportunity to address the complexities of ADHD and FASD from different perspectives and included presentations, discussions, and group work. The attendees worked towards producing a consensus for a unified approach to ADHD and associated FASD. RESULTS: The authors successfully came to consensus and produced recommended guidelines with specific regards to identification and assessment, interventions and treatments, and multiagency liaisons and care management, highlighting that a lifespan approach to treatment needs to be adopted by all involved. Included in the guidelines are: 1) unique 'red flags', which when identified in the ADHD population can lead to an accurate associated FASD diagnosis, 2) a treatment decision tree, and 3) recommendations for multiagency care management. CONCLUSIONS: While clinically useful guidelines were achieved, more research is still needed to contribute to the knowledge base about the diagnosis, treatment, and management of those with ADHD and associated FASD.

"Taking part in the project has really changed our experience as a family" investigating parents' experience of participation in a study to screen for fetal alcohol spectrum disorder.

Background: Screening children for developmental disorders presents unique ethical and methodological challenges, particularly with disorders associated with high levels of shame and stigma. Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental condition resulting from prenatal alcohol exposure. The potential distress caused by informing parents that their child may have FASD has been cited as a significant barrier to conducting such studies. However, limited research has investigated the impact of screening for FASD on parents and children. Aims: This exploratory study aimed to examine the experiences of a small sample of parents participating in an active case ascertainment prevalence study screening for FASD in Greater Manchester, UK (ADD-GM study). Methods: Interviews were conducted with six parents, whose children aged 8-10 years, underwent screening (including three cases of FASD). Thematic analysis was performed on the collected data to identify key themes and patterns. Results: The analysis revealed that parents perceived participation in the study as worthwhile, and their children either enjoyed or were indifferent to the process of data collection. Parents of children identified with FASD reported that although the results were surprising, they did not find the experience overly distressing. Conclusion: The findings suggest that parents generally view participation positively and perceive limited negative impact. These insights contribute to a better understanding of the challenges and benefits associated with screening children for FASD.

Fetal alcohol spectrum disorders: an overview of current evidence and activities in the UK.

Estimates for the UK suggest that alcohol consumption during pregnancy and prevalence of fetal alcohol spectrum disorder (FASD)-the most common neurodevelopmental condition-are high. Considering the significant health and social impacts of FASD, there is a public health imperative to prioritise prevention, interventions and support. In this article, we outline the current state of play regarding FASD knowledge and research in the UK, which is characterised by a lack of evidence, a lack of dedicated funding and services, and consequently little policy formulation and strategic direction. We highlight progress made to date, as well as current knowledge and service gaps to propose a way forward for UK research.

Family members' perceptions of a Singing Medicine project in a children's hospital.

AIM: The aim of this study was to explore family members' perceptions of a Singing Medicine project undertaken by children with long-term conditions in one children's hospital. METHOD: A qualitative approach was used involving semi-structured interviews with the family members of children aged 3-14 years who had long-term conditions and were being cared for at one children's hospital in England. Interviews were digitally recorded, anonymised and stored in a password-protected space. Data were analysed using thematic analysis. FINDINGS: Analysis identified five themes: people in purple shirts; music and emotions; being part of a 'hospital family'; distraction therapy; and lasting effects and life after illness and death. The negative effect for children of being separated from their homes and families during long-term hospital stays was evident, but positive effects, such as developing new relationships, were also identified. Participating in the Singing Medicine project provided children with opportunities to express themselves. The concept of belonging to a hospital family emerged from the study, which could potentially reduce stressors and enhance children's well-being and capacity to cope with long-term illness. CONCLUSION: The findings showed that participation in 'arts-in-health' initiatives such as the Singing Medicine project was associated with benefits for children with long-term conditions and their families, such as a reduction in negative emotions and enhanced well-being through distraction and the sharing of positive experiences. Ensuring that children who spend prolonged periods of time in hospital have opportunities to play and express themselves is a priority for healthcare services.