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1 – 10 of 586Christine Wee, Sujeet Jaydeokar, Chinemerem Ugwuonah, Leanne Armstrong and Mahesh Odiyoor
The purpose of this paper is to outline what early support should be offered to children and young people with neurodevelopmental conditions including those who are autistic or…
Abstract
Purpose
The purpose of this paper is to outline what early support should be offered to children and young people with neurodevelopmental conditions including those who are autistic or have intellectual disability. A review of all child and adolescent mental health services (CAMHS) services in the Northwest completed by NHS England and Improvement (Doyle and Ryan, 2021) found that there was no clear Tier 2 offer (for mild to moderate mental health issues) for autistic children and young people or for those with intellectual disability. Following this review, a project group that had developed a model for mental health services for autistic children and young people and for those with intellectual disability (Wee et al., 2021) was tasked with articulating the “Getting Help” offer for children and young people with neurodevelopmental conditions, including intellectual disability.
Design/methodology/approach
A working group was created consisting of professionals from mental health, education and local authority and lived experience representatives of coproduction partners. A brief review of the background literature was also conducted. Six meetings were held to create a framework for the “Getting Help” offer and to discuss what the offer should be based on professional expertise and lived experience.
Findings
Recommendations for the Getting Help multi-agency offer included pre- and post-assessment support as part of a single attention deficit hyperactivity disorder/autism/neurodevelopmental pathway, community support for children with intellectual disability, access to adapted mental health support and the need for early recognition and support for avoidant and restrictive food intake disorder. Key themes from working group discussions included the reduction in the quality of services experienced by children and families due to silo working, which increased the risk of falling between multi-agency services and led to early signs of neurodevelopmental needs, or mental health issues being missed. Another theme was aiming for equity of access and outcomes.
Originality/value
This work is a response to a coproduced review of CAMHS in the Northwest and incorporates the lived experience of young people and families. It also adopts a holistic multi-agency neurodevelopmental approach rather than focusing on a single diagnosis or service.
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Yogesh Thakker, Kunle Bamidele, Afia Ali and Angela Hassiotis
The purpose of this article is to explore the current evidence base in understanding the relationship between mental health and challenging behaviour in people with intellectual…
Abstract
Purpose
The purpose of this article is to explore the current evidence base in understanding the relationship between mental health and challenging behaviour in people with intellectual disabilities.
Design/methodology/approach
The article discusses how challenging behaviour is associated with psychiatric disorders. Common aetiological factors between challenging behaviour and psychiatric disorders and diagnostic issues are considered. The article ends with a review of the assessment and management of challenging behaviour within the context of mental health.
Findings
Several studies have highlighted common aetiological factors that are responsible for challenging behaviour and psychiatric disorders in people with intellectual disabilities, and although there is an overlap in the symptoms, both are thought to be different phenomena. Treatment of the psychiatric disorder should ameliorate the challenging behaviour, although a functional analysis of the behaviour may still be required in order to understand the purpose of the behaviour. There is evidence for a range of different treatment approaches.
Originality/value
The article will assist professionals working with people with intellectual disabilities to understand the complex relationship between mental health and challenging behaviour. It also gives guidance on principles of management of people with complex mental health and behavioural needs.
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Ivana Vasilevska Petrovska, Anastasia C. Giannakopoulou, Vassiliki Tsecoura, Angela Winstanley, Roberto Miletto, Georgeta Constanţa Roşca, Biserka Ivanova, Vasiliki Kaisa and Vladimir Trajkovski
Amid the expanding demand on the autism service delivery system, little knowledge is accumulated regarding access and availability of support and services in the region of…
Abstract
Purpose
Amid the expanding demand on the autism service delivery system, little knowledge is accumulated regarding access and availability of support and services in the region of Southern and South-Eastern Europe – critical for improvement of individual outcomes, as well as family quality of life. The purpose of this paper is to explore how service delivery systems are responding to the specific needs of autistic individuals with autism, as perceived by parents.
Design/methodology/approach
A qualitative exploratory descriptive method was used. Thematic analysis was used as a pragmatic method to report on the experiences of parents (92% mothers, n = 55) of children, youth and young autistic adults (76% male) across six South and South-Eastern European counties that participated in a survey involving a combination of qualitative and quantitative data collection.
Findings
Thematic analysis revealed three broad themes: challenging pathways to service utilization, insufficient service options and providers’ competences and lack of continuous and meaningful support across life span.
Originality/value
The findings from this study add to the small body of literature specific to South and South-Eastern Europe, by exposing problems related to meeting the needs of autistic children and youth and potential ways to strengthen services, as perceived by parents. The findings have potential policy ramifications for the region in which the research was conducted.
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Dean J. Connolly, Gail Gilchrist, Jason Ferris, Cheneal Puljević, Larissa Maier, Monica J. Barratt, Adam Winstock and Emma L. Davies
Using data from 36,981 respondents to the Global Drug Survey (GDS) COVID-19 Special Edition, this study aims to compare changes, following the first “lockdown,” in alcohol…
Abstract
Purpose
Using data from 36,981 respondents to the Global Drug Survey (GDS) COVID-19 Special Edition, this study aims to compare changes, following the first “lockdown,” in alcohol consumption between lesbian, gay, bisexual and other sexual minority (LGB+) and heterosexual respondents with and without lifetime mental health and neurodevelopmental (MHND) conditions.
Design/methodology/approach
Characteristics and drinking behavior of respondents to GDS who disclosed their sexual orientation and past 30-day alcohol use were described and compared. LGB+ participants with and without MHND conditions were compared, and logistic regression models identified correlates of increased drinking among LGB+ people. The impact of changed drinking on the lives of LGB+ participants with and without MHND conditions was assessed.
Findings
LGB+ participants who reported that they were “not coping well at all” with the pandemic had twofold greater odds of reporting increased binge drinking. LGB+ participants with MHND conditions were significantly more likely than those without to report increased drinking frequency (18.7% vs 12.4%), quantity (13.8% vs 8.8%) and that changed drinking had impacted their lives.
Originality/value
This study, which has a uniquely large and international sample, explores aspects of alcohol use not considered in other COVID-19 alcohol use research with LGB+ people; and to the best of the authors’ knowledge, this is the first study to explore alcohol use among LGB+ people with MHND conditions.
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Marco O. Bertelli, Kerim Munir, James Harris and Luis Salvador-Carulla
The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health…
Abstract
Purpose
The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization’s (WHO’s) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11.
Design/methodology/approach
A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences.
Findings
The WG recommended a synonym set (“synset”) ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as “a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills”. The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features.
Originality/value
Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single construct incorporates IDD as a clinical meta-syndrome, and ID as its functioning and disability counterpart. IDD and ID are not synonymous or mirror concepts as they have different scientific, social and policy applications. New diagnostic criteria for IDD should be based on a developmental approach, which accounts for the complex causal factors known to impact the acquisition of specific cognitive abilities and adaptive behaviours. The paper focuses on a new clinical framework for the diagnosis of IDD that also includes and complements the existing social, educational and policy components inherent in ID.
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William C. Curran and Matt C. Danbrook
Child welfare services (CWSs) globally continue to absorb high rates of children living with or suspected of fetal alcohol spectrum disorder (FASD). Such high prevalence rates…
Abstract
Purpose
Child welfare services (CWSs) globally continue to absorb high rates of children living with or suspected of fetal alcohol spectrum disorder (FASD). Such high prevalence rates render CWS with major ethical and moral dilemmas of meeting complex needs. Currently, many jurisdictions are challenged by diagnostic capacity and cost implications of formal FASD diagnosis. This paper aims to recommend a screening protocol to address management gap between FASD initial presentation and formal diagnosis.
Design/methodology/approach
This is a follow-up paper from a grounded-theory study of a sample (N = 18) of child welfare social workers (CWSWs), allied health professionals and foster parents. A stepwise protocol was developed through systematical interpretation of the final data.
Findings
The application of a five-step screening protocol would greatly support CWSW in meeting the needs of children with suspected FASD. This CWSWs-led assessment model incorporates a clinical evaluation to exclude neurodevelopmental conditions caused by known genetic disorders, followed by behavioral and neurocognitive psychosocial assessments.
Research limitations/implications
This study had several limitations. Firstly, as a specific social work-based sample, it is not necessarily representative of the wider population of social workers globally due to different cultural responses to FASD in CWSs. The transferability of findings will have to be considered due to cultural variations concerning FASD.
Practical implications
By offering a management and nonlabeling approach, this five-step screening protocol offers a delineated pathway for CWSW and addresses the major professional frustrations while seeking to plan safe care for a child suspected of having FASD.
Social implications
The research offers a pragmatic low-cost to society to alleviate the mounting social and monetary implications of FASD. A large percentage of children impacted by prenatal alcohol exposure do not qualify under formal clinical diagnostic guidelines. Leaving these children without intervention is problematic. The recommendation of this study addresses this critical gap in services. The primary aim is to alleviate the burden on this cohort of vulnerable children by offering nonlabeling neurodevelopmental screening.
Originality/value
The direct implications of FASD and how it impacts CWS are well documented. However, few studies focus on the critical interface of FASD and the role of CWSW responsible for planning their safe care. This paper offers a novel pragmatic and functional multistep protocol to aid CWSW in this complex area of practice.
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Raja Mukherjee, Michael Layton, Evan Yacoub and Jeremy Turk
Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This…
Abstract
Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This study explored the relationship between FAS and ASD in individuals attending a specialist diagnostic clinic. Consecutive referrals over 24 months to a specialist neurodevelopmental clinic were evaluated using gold standard methods for FAS diagnosis and ASD. The first 18‐month cohort who met criteria for ASD were compared with controls attending the same clinic but who had not experienced prenatal alcohol exposure (nested data). Data for the whole group were also collected. Twenty‐one fetal alcohol spectrum disorder (FASD) individuals were assessed and 16 (72%) met ICD‐10 criteria for childhood autism. Further significant differences between the prenatally exposed and non‐exposed group with ASD were found in the nested study. The research shows an association between heavy prenatal alcohol exposure and ASD. As this is a small sample in a specialist clinic, the study suggests that a larger, more population‐based study of those exposed to heavy prenatal alcohol is warranted.
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– The purpose of this paper is to provide a summary of main outcomes of the 10th EAMHID International Congress and a critical overview of some key contributions.
Abstract
Purpose
The purpose of this paper is to provide a summary of main outcomes of the 10th EAMHID International Congress and a critical overview of some key contributions.
Design/methodology/approach
A discussion on the impact of the neurodevelopmental perspective on mental health care achievements and failures in the field of intellectual disability (ID) and autism spectrum disorders (ASD).
Findings
The considerable progress in the field of mental health care for people with ID that has been made in the last 30 years and that is reflected through the 350 papers presented in this Congress represents the continuation of the work of great pioneers, such as Frank Menolascino, Felix Platter or William I. Gardner, who have been honoured by the EAMHID in the naming of the congress rooms, and the dedication of the poster award. The neurodevelopmental perspective was confirmed to be the current most valued conceptual framework to explain relations across systems and to support multi-level, transnosographic, life-long, interdisciplinary approaches in the production of aetiological insight and good-quality intervention for mental health problems; on the other hand it might determine a premature abandonment of the traditional nosology and the appearance of very broad spectrum conditions covering the full range of psychopathology. Also psychopharmacology was extensively considered, with the explicit aim to raise the attention of researchers and clinicians on this neglected topic. Unfortunately, adults with ID/ASD are still deprived of the right to receive treatments that are based on strong evidence, as it is for the general population.
Originality/value
This editorial outlines the second part of a special issue that offers a comprehensive and varied collection of papers from the contributions to the 10th International Congress of the EAMHID.
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Foetal alcohol spectrum disorders describes a group of disorders caused by the consumption of prenatal alcohol. The range of outcomes and the clinical management of these…
Abstract
Foetal alcohol spectrum disorders describes a group of disorders caused by the consumption of prenatal alcohol. The range of outcomes and the clinical management of these disorders vary in both the complexity of their presentations, associated disorders and management outcomes. This article seeks to review the literature around some of the more difficult areas associated with the condition and present some insights into possible ways of managing the psychiatric and neurodevelopmental disorders seen in the context of the UK system and the NHS.
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Ashleigh Saunders and Karen E. Waldie
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition for which there is no known cure. The rate of psychiatric comorbidity in autism is extremely high, which…
Abstract
Purpose
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition for which there is no known cure. The rate of psychiatric comorbidity in autism is extremely high, which raises questions about the nature of the co-occurring symptoms. It is unclear whether these additional conditions are true comorbid conditions, or can simply be accounted for through the ASD diagnosis. The paper aims to discuss this issue.
Design/methodology/approach
A number of questionnaires and a computer-based task were used in the current study. The authors asked the participants about symptoms of ASD, attention deficit hyperactivity disorder (ADHD) and anxiety, as well as overall adaptive functioning.
Findings
The results demonstrate that each condition, in its pure form, can be clearly differentiated from one another (and from neurotypical controls). Further analyses revealed that when ASD occurs together with anxiety, anxiety appears to be a separate condition. In contrast, there is no clear behavioural profile for when ASD and ADHD co-occur.
Research limitations/implications
First, due to small sample sizes, some analyses performed were targeted to specific groups (i.e. comparing ADHD, ASD to comorbid ADHD+ASD). Larger sample sizes would have given the statistical power to perform a full scale comparative analysis of all experimental groups when split by their comorbid conditions. Second, males were over-represented in the ASD group and females were over-represented in the anxiety group, due to the uneven gender balance in the prevalence of these conditions. Lastly, the main profiling techniques used were questionnaires. Clinical interviews would have been preferable, as they give a more objective account of behavioural difficulties.
Practical implications
The rate of psychiatric comorbidity in autism is extremely high, which raises questions about the nature of the co-occurring symptoms. It is unclear whether these additional conditions are true comorbid conditions, or can simply be accounted for through the ASD diagnosis.
Social implications
This information will be important, not only to healthcare practitioners when administering a diagnosis, but also to therapists who need to apply evidence-based treatment to comorbid and stand-alone conditions.
Originality/value
This study is the first to investigate the nature of co-existing conditions in ASD in a New Zealand population.
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