This report suggests that children with learning disabilities are 28 times more likely to have a serious sight problem than other children, but are less likely to be able to communicate their concerns to parents/carers should any problems develop. For some children, not having a pair of glasses is impeding their ability to make sense of their world and acquire skills. What is more, identification of sight problems is often symptom led and behaviour may be wrongly attributed to the diagnosis of learning disability, rather than a sight problem. The report finds: insufficient vision screening to pick up issues early on; fragmented pathways of care and communication; a rigid primary eye care contract for sight testing services and glasses; inadequate funding; and eye care low on child public health priorities. The report calls for the government to ensure children in special schools: are offered a comprehensive specialist sight test when they first start at school; are offered an annual specialist sight test (or more often if necessary) performed in the familiar surroundings of their special school; have their glasses fitted and be supported to get used to them, within their special school; and have their test results explained to them, their families and teachers, as well as their health professionals, throughout their school life and in transition to adulthood.
(Edited publisher abstract)
This report suggests that children with learning disabilities are 28 times more likely to have a serious sight problem than other children, but are less likely to be able to communicate their concerns to parents/carers should any problems develop. For some children, not having a pair of glasses is impeding their ability to make sense of their world and acquire skills. What is more, identification of sight problems is often symptom led and behaviour may be wrongly attributed to the diagnosis of learning disability, rather than a sight problem. The report finds: insufficient vision screening to pick up issues early on; fragmented pathways of care and communication; a rigid primary eye care contract for sight testing services and glasses; inadequate funding; and eye care low on child public health priorities. The report calls for the government to ensure children in special schools: are offered a comprehensive specialist sight test when they first start at school; are offered an annual specialist sight test (or more often if necessary) performed in the familiar surroundings of their special school; have their glasses fitted and be supported to get used to them, within their special school; and have their test results explained to them, their families and teachers, as well as their health professionals, throughout their school life and in transition to adulthood.
(Edited publisher abstract)
Child: Care, Health and Development, 36(1), January 2010, pp.93-100.
Publisher:
Wiley
Previous research has established that the intellectual disability of a child affects parents in both positive and negative ways. The aim of this study was to explore the variation of parents' descriptions and experiences of their child that was recently identified to have an intellectual disability. The study applied interpretative phenomenological analysis and analysis of narrative style looking at content and form of parental narratives. Data was collected from nine fathers and eight mothers through semi-structured interviews within 6 months following diagnosis. Analysis revealed three factors indicating the parents' level of processing: (1) emotional expressions regarding the child, varying between limited (distanced or idealised) and balanced/affectionate; (2) experience of the disability, varying between preoccupation and acceptance; and (3) time orientation, varying in terms of flexibility and temporal focus. Although parents of children with ID describe negative emotions in relation to the child and the disability, most of these parents also describe positive emotions that seemed to balance the negative experiences. Parents may require professional help in dealing with the difficulties related to uncertainties regarding the child’s diagnosis or prognosis.
Previous research has established that the intellectual disability of a child affects parents in both positive and negative ways. The aim of this study was to explore the variation of parents' descriptions and experiences of their child that was recently identified to have an intellectual disability. The study applied interpretative phenomenological analysis and analysis of narrative style looking at content and form of parental narratives. Data was collected from nine fathers and eight mothers through semi-structured interviews within 6 months following diagnosis. Analysis revealed three factors indicating the parents' level of processing: (1) emotional expressions regarding the child, varying between limited (distanced or idealised) and balanced/affectionate; (2) experience of the disability, varying between preoccupation and acceptance; and (3) time orientation, varying in terms of flexibility and temporal focus. Although parents of children with ID describe negative emotions in relation to the child and the disability, most of these parents also describe positive emotions that seemed to balance the negative experiences. Parents may require professional help in dealing with the difficulties related to uncertainties regarding the child’s diagnosis or prognosis.
Psychiatric Bulletin, 30(7), July 2006, pp.251-253.
Publisher:
Royal College of Psychiatrists
Anecdotal evidence suggests that attention-deficit hyperactivity disorder (ADHD) is underdiagnosed in adults and people of all ages with learning disability. This study examines the clinical practice of Irish consultant psychiatrists when assessing and treating symptoms of ADHD in children and adults with and without a learning disability. A postal questionnaire was sent to 302 consultant psychiatrists working in Ireland. Ninety-seven consultants (32%) responded, 62 working in general adult psychiatry, 23 in child and adolescent psychiatry and 12 in learning disability. Overall, respondents were more confident about making a diagnosis of ADHD in people without a learning disability. Those working with children were significantly more confident in diagnosing and treating ADHD than those working with adults, irrespective of whether the patient had a learning disability. There is general agreement that symptoms of ADHD exist in children and adults both with and without a learning disability. It is likely that ADHD may be undertreated in patients with learning disability, especially in the adult population.
Anecdotal evidence suggests that attention-deficit hyperactivity disorder (ADHD) is underdiagnosed in adults and people of all ages with learning disability. This study examines the clinical practice of Irish consultant psychiatrists when assessing and treating symptoms of ADHD in children and adults with and without a learning disability. A postal questionnaire was sent to 302 consultant psychiatrists working in Ireland. Ninety-seven consultants (32%) responded, 62 working in general adult psychiatry, 23 in child and adolescent psychiatry and 12 in learning disability. Overall, respondents were more confident about making a diagnosis of ADHD in people without a learning disability. Those working with children were significantly more confident in diagnosing and treating ADHD than those working with adults, irrespective of whether the patient had a learning disability. There is general agreement that symptoms of ADHD exist in children and adults both with and without a learning disability. It is likely that ADHD may be undertreated in patients with learning disability, especially in the adult population.
Journal of Intellectual Disability Research, 54(10), October 2010, pp.894-905.
Publisher:
Wiley
The literature was reviewed to identify behaviours that appeared to distinguish those boys with FXS/autism from those with only FXS. Three major categories of behaviour that may be distinguishing were identified: recognising emotions in self and others; social withdrawal and avoidance; and imaginative play, social play and object play. Backward regression was used to identify the combination of parent-report questionnaire items that best predicted autism symptoms in a sample of 60 males with FXS aged 4-18 years identified through the Carolina Fragile X Project. These items were matched with the three categories identified from the literature. Both social and repetitive behaviours distinguished males with FXS/autism; repetitive behaviours played a more prominent role than previously documented in the literature. The authors conclude that healthcare workers and early interventionists may be able to interview parents about a few key behaviours to determine if young child with FXS should be formally evaluated for autism.
The literature was reviewed to identify behaviours that appeared to distinguish those boys with FXS/autism from those with only FXS. Three major categories of behaviour that may be distinguishing were identified: recognising emotions in self and others; social withdrawal and avoidance; and imaginative play, social play and object play. Backward regression was used to identify the combination of parent-report questionnaire items that best predicted autism symptoms in a sample of 60 males with FXS aged 4-18 years identified through the Carolina Fragile X Project. These items were matched with the three categories identified from the literature. Both social and repetitive behaviours distinguished males with FXS/autism; repetitive behaviours played a more prominent role than previously documented in the literature. The authors conclude that healthcare workers and early interventionists may be able to interview parents about a few key behaviours to determine if young child with FXS should be formally evaluated for autism.
Journal of Public Mental Health, 8(1), March 2009, pp.37-45.
Publisher:
Emerald
Understanding the mental health problems of children who have learning disabilities presents huge challenges across many domains. The paper examines some of the assessment frameworks that may be used, offers clinical guidance on collecting information and suggests ways in which various theoretical approaches can be used to derive comprehensive case formulations. The common assessment approaches mentioned are psychiatric, behavioural, ecological and early attachment. A case study is used to discuss the use of the frameworks. An emphasis is placed on the use of structured methods to improve reliability and validity.
Understanding the mental health problems of children who have learning disabilities presents huge challenges across many domains. The paper examines some of the assessment frameworks that may be used, offers clinical guidance on collecting information and suggests ways in which various theoretical approaches can be used to derive comprehensive case formulations. The common assessment approaches mentioned are psychiatric, behavioural, ecological and early attachment. A case study is used to discuss the use of the frameworks. An emphasis is placed on the use of structured methods to improve reliability and validity.
Subject terms:
learning disabilities, mental health problems, psychiatry, young people, assessment, children, diagnosis;
British Journal of Psychiatry, 191(12), December 2007, pp.493-499.
Publisher:
Cambridge University Press
Few studies have employed formal diagnostic criteria to determine the prevalence of psychiatric disorders in contemporaneous samples of children with and without intellectual disabilities. This seeks to establish the prevalence of psychiatric disorders against ICD–10 criteria among children with and without intellectual disabilities, the association with social/environmental risk factors, and risk attributable to intellectual disability. Secondary analysis of the 1999 and 2004 Office for National Statistics surveys of the mental health of British children and adolescents with (n=641) and without (n=17 774) intellectual disability. Prevalence of psychiatric disorders was 36% among children with intellectual disability and 8% among children without (OR=6.5). Children with intellectual disabilities accounted for 14% of all British children with a diagnosable psychiatric disorder. Increased prevalence was particularly marked for autistic-spectrum disorder (OR=33.4), hyperkinesis (OR=8.4) and conduct disorders (OR=5.7). Cumulative risk of exposure to social disadvantage was associated with increased prevalence. A significant proportion of the elevated risk for psychopathology among children with intellectual disability may be due to their increased rate of exposure to psychosocial disadvantage.
Few studies have employed formal diagnostic criteria to determine the prevalence of psychiatric disorders in contemporaneous samples of children with and without intellectual disabilities. This seeks to establish the prevalence of psychiatric disorders against ICD–10 criteria among children with and without intellectual disabilities, the association with social/environmental risk factors, and risk attributable to intellectual disability. Secondary analysis of the 1999 and 2004 Office for National Statistics surveys of the mental health of British children and adolescents with (n=641) and without (n=17 774) intellectual disability. Prevalence of psychiatric disorders was 36% among children with intellectual disability and 8% among children without (OR=6.5). Children with intellectual disabilities accounted for 14% of all British children with a diagnosable psychiatric disorder. Increased prevalence was particularly marked for autistic-spectrum disorder (OR=33.4), hyperkinesis (OR=8.4) and conduct disorders (OR=5.7). Cumulative risk of exposure to social disadvantage was associated with increased prevalence. A significant proportion of the elevated risk for psychopathology among children with intellectual disability may be due to their increased rate of exposure to psychosocial disadvantage.
Journal of Intellectual and Developmental Disability, 32(3), September 2007, pp.179-187.
Publisher:
Taylor and Francis
This study is the first to evaluate the Social Communication Questionnaire (SCQ) and the Developmental Behaviour Checklist-Autism Screening Algorithm (DBC-ASA) in the same sample of school-aged children with intellectual disability (ID) with and without Pervasive Developmental Disorders (PDDs). Parents of 49 children (36 with PDDs and 13 with ID) recruited from schools in Ohio in the United States completed a survey that included a demographic form, a measure of adaptive behaviour (the SIB-R), the SCQ, and the DBC-ASA. According to established cut-offs, the SCQ's sensitivity was .92 and specificity was .62, and the DBC-ASA's sensitivity was .94 and specificity was .46. Six of the seven false positives on the DBC-ASA had DBC Total Problem Behaviour scores above the clinical cut-off. By contrast, all six true negatives had Total Problem Behaviour scores below the clinical cut-off. No such pattern was noted for the SCQ. While both instruments have good psychometric properties, the results of this study suggest that clinicians and researchers should exercise caution when utilising the DBC-ASA to screen for PDDs in individuals with significant behaviour problems, as this could decrease its diagnostic validity.
This study is the first to evaluate the Social Communication Questionnaire (SCQ) and the Developmental Behaviour Checklist-Autism Screening Algorithm (DBC-ASA) in the same sample of school-aged children with intellectual disability (ID) with and without Pervasive Developmental Disorders (PDDs). Parents of 49 children (36 with PDDs and 13 with ID) recruited from schools in Ohio in the United States completed a survey that included a demographic form, a measure of adaptive behaviour (the SIB-R), the SCQ, and the DBC-ASA. According to established cut-offs, the SCQ's sensitivity was .92 and specificity was .62, and the DBC-ASA's sensitivity was .94 and specificity was .46. Six of the seven false positives on the DBC-ASA had DBC Total Problem Behaviour scores above the clinical cut-off. By contrast, all six true negatives had Total Problem Behaviour scores below the clinical cut-off. No such pattern was noted for the SCQ. While both instruments have good psychometric properties, the results of this study suggest that clinicians and researchers should exercise caution when utilising the DBC-ASA to screen for PDDs in individuals with significant behaviour problems, as this could decrease its diagnostic validity.
Child: Care, Health and Development, 33(5), September 2007, pp.547-551.
Publisher:
Wiley
This study describes preliminary stages of developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of currently used checklists is low, with a focus on the child's sensory integration instead of perception. The inter-rater reliability of a checklist was determined, and adjustments were made to improve reliability. Strikingly, the reliability decreased for all components after adjustment. The effect of a smaller item pool was ruled out. The effect of familiarity of teachers as raters was examined. Results show that teachers who know a child well could interpret that child's behaviour more accurately than persons who were unfamiliar with the child. However, reliability of the checklist remains a problem.
This study describes preliminary stages of developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of currently used checklists is low, with a focus on the child's sensory integration instead of perception. The inter-rater reliability of a checklist was determined, and adjustments were made to improve reliability. Strikingly, the reliability decreased for all components after adjustment. The effect of a smaller item pool was ruled out. The effect of familiarity of teachers as raters was examined. Results show that teachers who know a child well could interpret that child's behaviour more accurately than persons who were unfamiliar with the child. However, reliability of the checklist remains a problem.
This project researched the emotional needs of families where there is a child with learning disabilities, from the time of the diagnosis to the age of five years. This was in recognition of the fact that the way parents are told the news of their child's disability and the support they receive is crucial to the future of the whole family . This was achieved through conducting a literature review and a small study. The research involved in-depth interviews with twenty-two parents to find out the following information: how the diagnosis was given to them; what information they received immediately after the diagnosis and in the following couple of years ;what support, both emotional and practical, they received from the time of birth to the age of five years; and what the impact of having a child with a disability was on the family.
This project researched the emotional needs of families where there is a child with learning disabilities, from the time of the diagnosis to the age of five years. This was in recognition of the fact that the way parents are told the news of their child's disability and the support they receive is crucial to the future of the whole family . This was achieved through conducting a literature review and a small study. The research involved in-depth interviews with twenty-two parents to find out the following information: how the diagnosis was given to them; what information they received immediately after the diagnosis and in the following couple of years ;what support, both emotional and practical, they received from the time of birth to the age of five years; and what the impact of having a child with a disability was on the family.
Extended abstract:
Author
DAVIES Jill.
Title
First impressions: emotional and practical support for families of young children with a learning disability: a guide for practitioners and service commissioners.
Publisher
Foundation for People with Learning Disabilities, 2005
Summary
This project researched the emotional needs of families with a child with learning disabilities from the time of the diagnosis to the age of five years.
Context
The project recognised the fact that the way parents are told the news of their child's disability and the support they receive is crucial to the future of the whole family.
Method
This was achieved through conducting a literature review and a small study. The research involved in-depth interviews with twenty-two parents to find out how the diagnosis was given to them; what information they received immediately after the diagnosis and in the following couple of years; what support, both emotional and practical, they received from the time of birth to the age of five years; and what the impact of having a child with a disability was on the family.
Contents
A foreword by the Chair of the First Impressions Advisory Committee, the father of a child with Down's syndrome, gives a personal view of such needs. An introduction gives the background: 70,000 disabled children in the UK , a figure set to increase, and an increased number of support initiatives. The introduction also describes the research process. The first chapter covers sharing the news and information: the disclosure, families from different cultural backgrounds, learning later on, the information parents need, the next stage, and the Sharing Concerns Portage Parents project. Chapter two discusses emotional and practical support: emotional wellbeing, day-to-day practicalities, fathers, key workers and emotional support, flexibility, and the Bromley Early Support Programme. The impact on the family is the theme of Chapter 3: stress, housing, relationships, work opportunities, siblings, and extended family and friends. Siblings workshops at Sunfield School , Warwickshire, and Hernes House Sibling Social Support Group, Oxfordshire, are described. Case studies are given throughout. Appendices dicusss working through an interpreter and list useful organisations.
Conclusion
Key action points linked to examples of good practice are listed throughout. Chapter 4 gives additional practical and strategic recommendations that can improve emotional and practical support for families with a young disabled child, under the headings of information at diagnosis and during the early years, emotional and practical support, and impact on the family, and targeted at Government agencies, planners, local commissioners, paediatricians, midwives, health visitors and other healthcare professionals, social care, education and voluntary organisations, and research bodies.
39 references
ISBN 1 903645 65 4
Subject terms:
learning disabilities, literature reviews, children, diagnosis, emotions, families;
British Journal of General Practice, 54(502), May 2004, pp.348-352.
Publisher:
Royal College of General Practitioners
This study compares GP recognition of disorders with child mental health data and examines factors affecting recognition, in particular whether recognition is enhanced if the parent expresses concern during the consultation. The study involved a two-phase design involving an initial community survey of children between the ages of 5 and 11 years. In the second phase, primary care attenders who were regarded by their GP as having a mental health disorder were compared with those who were not. For 186 children attending primary care, GP recognition was compared with the results of a child mental health questionnaire completed by parents. Accuracy and predictors of GP recognition were examined. Seventy four percent of children meeting criteria for caseness were not recognised by GP's as having a mental health disorder. The expression of parental concern in the consultation about a mental health problem increased the sensitivity of recognition from 26% to 88%. Expression of concern also increased GP recognition of non-cases; this reflected GP identification of other mental health and learning problems. Only a third of parents who had concerns expressed these during the consultation.
This study compares GP recognition of disorders with child mental health data and examines factors affecting recognition, in particular whether recognition is enhanced if the parent expresses concern during the consultation. The study involved a two-phase design involving an initial community survey of children between the ages of 5 and 11 years. In the second phase, primary care attenders who were regarded by their GP as having a mental health disorder were compared with those who were not. For 186 children attending primary care, GP recognition was compared with the results of a child mental health questionnaire completed by parents. Accuracy and predictors of GP recognition were examined. Seventy four percent of children meeting criteria for caseness were not recognised by GP's as having a mental health disorder. The expression of parental concern in the consultation about a mental health problem increased the sensitivity of recognition from 26% to 88%. Expression of concern also increased GP recognition of non-cases; this reflected GP identification of other mental health and learning problems. Only a third of parents who had concerns expressed these during the consultation.
Subject terms:
learning disabilities, mental health problems, parents, primary care, children, diagnosis, general practitioners;