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While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.

Fetal alcohol spectrum disorder (FASD) is one outcome from prenatal alcohol exposure. Social workers are likely to encounter children with the condition, due to the greater likelihood of prenatal alcohol exposure among children in social services settings. This study explores the experiences of social workers in working with children suspected of having FASD and the support offered to social workers, the children and their families. Semi-structured interviews followed by qualitative framework analysis were conducted with seven child and family social workers along with one child protection solicitor who had experience of handling FASD cases. The two main themes that emerged from the data were a lack of knowledge about FASD and the paucity of diagnosis. Lack of knowledge among the social workers was linked to difficulty in managing children suspected to have the condition, feelings of frustration and normalisation of challenging behaviours. The paucity of diagnosis led to an under-emphasis of FASD in assessments, a dearth of specialist services and confusion about its specific effects in contexts of multiple substance misuse and harmful socio-environmental factors. The need for increased FASD awareness within social services and the development of FASD-targeted support for children and families is highlighted. Social workers would benefit from the inclusion of FASD-focused training in their curricula and professional development plans. Improving the diagnostic capacities of health institutions would address the paucity of diagnosis and raise the profile of FASD, especially in the social services setting.

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for 'further professional consultation'. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

Research suggests that caring for a child with Fetal Alcohol Spectrum Disorders (FASD) creates unique challenges for carers. To investigate this, three focus groups and education sessions, attended by 66 people, were held in the UK. Knowledge about FASD and its impact on families was evaluated using the focus groups, the Parental Stress Index and knowledge questionnaire. Eight broad themes were identified from thematic analysis of the focus groups. The findings suggest more support is needed for carers of children with FASD, especially as carers grow older. The implication for current practice should be further evaluated in this group.

AbstractIndividuals with fetal alcohol spectrum disorders (FASD) are more likely to be involved with the criminal justice system (CJS) than neurotypical individuals. Interrogative suggestibility is theorised to be a weakness in this population; this is the first experimental evidence of interrogative suggestibility in adolescents with FASD. Fifty‐two participants (aged 11–16 years) completed the Gudjonsson Suggestibility Scale immediately and after 1 week; the Wechsler Intelligence Scale for Children; and the Behavioural Rating of Executive Function. Compared to the control group, individuals with FASD were more vulnerable to leading questions, negative feedback and evidenced significantly higher suggestibility, immediately and after 1 week. A significant correlation was found between immediate and repeat suggestibility at 1‐week follow‐up. Poorer memory recall, lower intelligence quotient and higher impulsivity were also observed in the FASD population. The results indicate the importance for the CJS to establish whether suspects, witnesses, and victims of crimes may have been impacted by prenatal alcohol exposure since this is a significant source of vulnerability that could lead to false confessions or miscarriage of justice.

Background  The aims were to identify referral characteristics and outcomes for people with intellectual disabilities referred to a psychodynamic psychotherapy service.Materials and Methods  A retrospective case notes review of anonymized data relating to 100 sequential patient episodes.Results  A total of 81 people out of 100 with a range of intellectual disabilities from mild to severe were assessed as suitable for therapy; 66 were eligible for individual, art, or group therapy.Common reasons for referral were: trauma/abuse, bereavement, depression and challenging behaviour. Many people had more than one cause for referral and/or co‐morbid psychiatric diagnoses. Indicators of success included: increased daily living skills, improved confidence, self‐esteem and behaviour, and finding employment.Conclusions  This study confirms findings from other studies that psychotherapy is possible in people with mild to severe intellectual disability with clinically recorded outcomes ranging from reductions in problem behaviours to getting a job.

IntroductionFetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.
ObjectiveTo conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.
MethodsWe consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N\,$=$\,5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N\,$=$\,17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.
ResultsOur tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.
ConclusionsMulti-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

ObjectivesTo conduct public engagement work to establish the views of key stakeholders on the feasibility, acceptability, key purposes, and data structure of the first national linked longitudinal research database for fetal alcohol spectrum disorder (FASD) in the UK.
MethodsWe conducted stakeholder mapping and identified contacts through collaborator networks and online searches. We consulted with stakeholders using a range of formats, including: online focus groups (one for adults with FASD [and their supporters] N=5; one for guardians of people with FASD N=7), 1:1/small-team video calls and email communication with clinicians, data providers, policy-makers, data-governance experts, third-sector representatives and researchers [N=~85]), and one hybrid workshop (N=16 [N=10 in-person, 6 online attendees; 15 clinical and one third-sector]). Consultations included discussions on data sharing, harmonisation, perceived benefits, and challenges of a national linked database for FASD. We analysed consultation transcripts and notes using thematic analysis.
ResultsOur tailored, multi-method approach resulted in high levels of engagement with diverse stakeholders. Overall, stakeholders expressed strong support for a national linked database for FASD. For people living with FASD and third-sector representatives, the main perceived benefit was the potential for increased understanding, awareness, and support for FASD. Clinicians reported that a national database could provide new insights into FASD profiles, supporting more efficient diagnosis. Researchers highlighted potential for increased knowledge of FASD epidemiology and impacts. Policy-makers noted its clear alignment with contemporary FASD and data transformation policies. Common concerns were around privacy and data-sharing, particularly the tension between public good and disclosure risks if sample numbers were low. Clinicians expressed the importance of retaining space for clinical judgement and flexibility alongside the potential insights gained from quantitative analysis of data.
ConclusionMulti-method and multidisciplinary stakeholder engagement demonstrated the feasibility and acceptability of establishing the first UK national linked database for FASD. Perceived benefits and concerns varied by stakeholder group, demonstrating that flexible, diverse, embedded stakeholder collaboration will be essential as we seek to establish this database.