Search

Abstract: Aim: We hypothesized that participant well‐being and satisfaction with services would be positively associated with a satisfactory clinical course during transition from child to adult health care. Methods: Some 150 young people with Type 1 diabetes mellitus from five diabetes units in England were recruited to a longitudinal study of transition. Each young person was visited at home four times by a research assistant; each visit was 1 year apart. Satisfaction with services (Mind the Gap; MTG) and mental well‐being (Warwick–Edinburgh Mental Well‐being Scale; WEMWBS) were captured. Change in HbA1c, episodes of ketoacidosis, clinic and retinal screening attendance were used to assess clinical course. In total, 108 of 150 (72%) young people had sufficient data for analysis at visit 4. Results: Mean age at entry was 16 years. By visit 4, 81.5% had left paediatric healthcare services. Median HbA1c increased significantly (P = 0.01) from 69 mmol/mol (8.5%) at baseline to 75 mmol/mol (9.0%) at visit 4. WEMWBS scores were comparable with those in the general population at baseline and were stable over the study period. MTG scores were also stable. By visit 4, some 32 individuals had a ‘satisfactory’ and 76 a ‘suboptimal’ clinical course. There were no significant differences in average WEMWBS and MTG scores between the clinical course groups (P = 0.96, 0.52 respectively); nor was there a significant difference in transfer status between the clinical course groups. Conclusions: The well‐being of young people with diabetes and their satisfaction with transition services are not closely related to their clinical course. Investigating whether innovative psycho‐educational interventions can improve the clinical course is a research priority. [ABSTRACT FROM AUTHOR]

Abstract: Background: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services. Methods: We recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3‐year longitudinal study. Reported needs were measured with an 11‐item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses. Results: A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services. Conclusions: Reporting of unmet needs can indicate where service development is required, and we have shown that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination. [ABSTRACT FROM AUTHOR]

Objective To validate a Rapid Neurodevelopmental Assessment (RNDA) tool for use by child health professionals to determine neurodevelopmental impairments (NDIs) in young adolescents aged 10-16 years in Bangladesh. Study design In a convenience sample of community children ( n = 47), inter-rater reliability was determined between four testers, and concurrent validity was determined by simultaneous administration of an intelligence quotient (IQ) test (Wechsler Intelligence Scale for Children, Revised) by a child psychologist. Results Inter-rater reliability was excellent between the testers on the 47 children administered the RNDA (kappa = 1.00). Significantly lower IQ scores were obtained in those identified with 'any ( >1) NDI' ( n = 34) compared with those with no NDI ( n = 13) on Verbal IQ ( P-value < 0.0001), Performance IQ ( P-value < 0.0001) and Full-scale IQ ( P-value < 0.0001) scores on the Wechsler Intelligence Scale for Children, Revised. Conclusion The RNDA shows promise as a tool for use by child health professionals for identifying NDIs in young adolescents aged 10-16 years. A larger study sample is needed to determine its usefulness for identification of some impairments not found in the study population, i.e. gross motor, fine motor, hearing and seizures. [ABSTRACT FROM AUTHOR]

Background: Autism spectrum disorder can in some cases be reliably diagnosed by age 2 years, but in community settings, the mean age at diagnosis is often considerably higher. Later diagnosis has been found to be associated with lower symptom severity, lower parental socioeconomic status and fewer parental concerns. Gender differences in age at diagnosis have been examined, with mixed evidence. Methods: We examined the association of child's verbal ability and gender, and parental education, with age at diagnosis in a large sample of young children with autism spectrum disorder in 18 European countries (n = 1410). Results: There was considerable variation in age at diagnosis across countries. Children with better communication skills were diagnosed significantly later than non-verbal and minimally verbal children. There was also a significant interaction of gender with verbal ability on age at diagnosis, in that female children with complex phrase speech were diagnosed later than male children with the same level of verbal ability. Conclusions: Our findings highlight the need to implement public awareness initiatives and training for professionals to promote early detection and, consequently, early intervention for autism spectrum disorder in Europe. [ABSTRACT FROM AUTHOR]

Objectives The aims of this study were to determine whether UK child development teams (CDTs) have implemented good practice recommendations for the co-ordinated assessment and support of children with neurodisability and to explore some of the factors associated with variations in good practice implementation. Design Surveys were sent to every UK CDT in 2009/2010. Responses about CDT provision and ways of working were compared with good practice recommendations from national policy documents and professional organizations. The extent to which CDTs in England and Wales met 11 selected good practice recommendations was scored; teams in Scotland and Northern Ireland were given a score out of 9 to reflect the optional use of the common assessment framework and early support materials in these countries. Results Responses were received from 225/240 (94%) UK CDTs. Thirty-seven per cent of CDTs in England and Wales had implemented nine or more of the 11 recommendations. Fifty-nine per cent of teams in Scotland and 78% of teams in Northern Ireland met between six and nine recommendations of good working practice. Higher levels of implementation of recommendations were found when the CDT had a Child Development Centre base and for teams who had received increased funding in the 5 years preceding the survey. Conclusions There was considerable variability in the degree to which CDTs implemented good practice recommendations for the diagnosis and management of children with neurodisability. Evidence about child and parent satisfaction, and the effectiveness of CDT practices and provision, is required, so policymakers, healthcare commissioners and clinicians can provide the most appropriate services to children with neurodisability and their families. [ABSTRACT FROM AUTHOR]

Research groups across Europe have been networking to share information and ideas about research on preschool children with autism. The paper describes preliminary work to develop capacity for future multi-site randomized controlled trials of early intervention, with a specific focus on the need to measure treatment adherence where parents deliver therapy. The paper includes a review of randomized and controlled studies of parent-mediated early intervention from two sources, a recent Cochrane Collaboration review and a mapping of European early intervention studies in autism published since 2002. The data extracted focused on methods for describing parent adherence, that is, how and to what extent parents carry out the strategies taught them by therapists. Less than half of the 32 studies reviewed included any measure of parent adherence. Only seven included a direct assessment method. The challenges of developing pan- European early intervention evaluation studies are discussed, including choice of intervention model and of important outcomes, the need for translation of measurement tools and achievement of joint training to reliability of assessors. Measurement of parent-child interaction style and of adherence to strategies taught need further study. [ABSTRACT FROM AUTHOR]

Objectives To identify how services provided by child development teams ( CDTs) have changed over 20 years. To what extent have major government initiatives aiming to improve the lives of children with disability and their families been implemented by teams? Design Survey sent to every UK CDT in 2009/2010; comparison with data gathered in 1988 and 1999. Results Ninety-four per cent (225/240) of CDTs responded; data on 242 teams were available from 1999 and 125 teams from 1988. Despite policy recommendations advocating the value of interdisciplinary team working, there was a decline in numbers of professionals working within the CDT multidisciplinary team. One-third of all teams reported a reduction in their funding over the last 5 years. However, specialist clinics provided increased. Teams reported patchy adoption of national initiatives designed to improve provision. Transition services were underdeveloped. Conclusions This comprehensive survey of UK CDT service provision, as well as national studies of the healthcare experience of families with a disabled child, shows that improvements in provision are required. [ABSTRACT FROM AUTHOR]

Background Home-based screening to identify young children at risk for neurodevelopmental impairments (NDIs) is needed to guide the targeting of child neurodevelopmental intervention services in Bangladesh. This study aimed to validate such a tool for children under age 2 years. Methods A Developmental Screening Questionnaire was administered to mothers of children aged 0-<2 years in an urban community. Inter-rater reliability among the interviewers, who were high school graduates, was determined. All children who were screen positive and a proportion of screen negatives were subsequently assessed for NDIs by professionals. Sensitivity and specificity were calculated by comparing screening with assessment results. Results Mean kappa coefficient of agreement among interviewers was 0.95. A total of 197 children were screened, of whom 17% screened positive. Fifty-one children, including 24 screen negatives, were assessed for NDIs. Screen-positivity was significantly different between income groups ( P= 0.019), and higher in stunted children (odds ratio = 5.76, 95% confidence interval = 1.72-19.28), indicating good discriminant validity Specificity was excellent (84-100%) for all developmental domains. Sensitivity was 100% for vision and hearing; 70% for speech; and 63%, 53%, 48%, and 45% for gross motor, behaviour, fine motor and cognitive impairments, respectively. Conclusion A tool for screening <2-year-old children at risk for NDIs showed high specificity; and was able to identify all children at risk for vision and hearing impairments, nearly three-fourths with speech impairments, two-thirds with gross motor impairments, and about half with behavioural, cognitive and fine motor impairments. The Developmental Screening Questionnaire tool has potential for use by frontline workers to screen large populations and to link to definitive assessment as well as intervention services. [ABSTRACT FROM AUTHOR]

Background Compared with other conditions there has been a lack of focus on quality of life (QoL) as an outcome measure for children and young people with Autism Spectrum Disorder (ASD). This pilot study aimed to evaluate the validity of existing QoL questionnaires for use with children with ASD aged 8-12 years. Methods A literature review (1990-2011) identified the PedsQL (Pediatric Quality of Life Inventory) and Kidscreen as robust measures used with children with neurodevelopmental disorders. These measures were completed by 10 children and 11 parents. In addition semi-structured interviews were conducted with 10 parents and four children to explore their experience of completing the QoL questionnaires. Results Young people with ASD, and their parents, report lower child QoL compared with a normative sample. Framework analysis of the data highlighted six key themes which may affect the validity of generic QoL measures when administered within an ASD sample and which warrant further investigation. Conclusions Our results indicate that a new condition-specific measure of QoL, grounded in ASD children's own perspectives of their lives, is needed and that such a measure should assess experiences of anxiety and access to special interests when measuring QoL of children with ASD. Active involvement of young people and their families is critical for the development of a theoretical framework for QoL within ASD, and any future development of an ASD-specific measure. [ABSTRACT FROM AUTHOR]

Background Gene-modifying trials offer hope for improvement in chronic paediatric disorders, but they may also lead to disappointment and have an adverse emotional effect on families. This study aimed to examine emotional impact on participants in a paediatric exon-skipping trial. Methods Nineteen male children with Duchenne muscular dystrophy (DMD), and their parents, taking part in a dose-ranging study of an i.v. administered morpholino splice-switching oligomer (which can restore the reading frame in DMD and induce dystrophin expression) underwent a psychosocial/psychiatric examination at trial entry. Emotional impact was assessed at trial completion using questionnaires. Results The mean child age was 8.9 years (SD 2.1); 13(68%) were attending mainstream school. Most families were well adjusted psychosocially at trial entry. Post-trial median child emotional impact scores were 5/10 ( n= 18), but impact was rated as positive by 6/14 (42%), neutral/mixed by 5 (35%) and negative by 3 (21%). Median post-trial psychosocial/psychiatric change scores in children and parents were minimal. Actual post-trial negative impact was statistically significantly associated with higher expected impact at trial entry, at which time the families of the three children displaying actual negative impact reported higher family stress levels in combination with a variety of other psychosocial risks factors. Conclusions In carefully selected families with low levels of psychosocial stress/distress at trial entry, and with good support from paediatric research units (including psychiatric input when required), genetic trials in progressive disorders such as DMD can have a predominantly positive or neutral emotional impact. Nevertheless, negative impact is reported by a minority of families and possible psychosocial predictors deserving further scrutiny have been identified. [ABSTRACT FROM AUTHOR]

Background In recent years, standards of good practice have been set for services to young children with autism spectrum disorders. Methods Data were analysed on children’s use of local services during a 2-year follow-up of families involved in an evaluation of a group course for parents. Data collection began prior to publication of the standards. Results Families’ reported experiences changed over time, but for most did not meet standards suggested: involvement with a multi-agency team of professionals, having someone who acted as a key worker, and the child accessing 15 h per week of specialist provision. Conclusion The development of flexible and responsive services appears to have a long way to go to meet standards set in the Autistic Spectrum Disorders Good Practice Guidance (2002) and the National Autism Plan for Children (2003). [ABSTRACT FROM AUTHOR]

Abstract Introduction Clinical governance requires measurement of the outcomes of health care. The Measure of Processes of Care (MPOCKing, Rosenbaum & King 1995) is a postal questionnaire developed in Canada to reflect parents’ perceptions of the quality of services received. Aim To examine the usefulness of the MPOC for the evaluation of services for children with disabilities and their families. Methods The MPOC was revised minimally for British idiom, taking out explicit references to a ‘Centre’. Surveys of parents using child disability services were carried out in three rural and two urban communities, where there are no Child Development Centres, with a total of 495 analysable questionnaires returned. In addition, 32 parents using a home nursing service for children with multiple disabilities completed questionnaires. Results The rate of return ranged from 49% to 67%. Factor analysis confirmed a five-factor solution but only one factor mapped clearly onto the Canadian structure. Using the revised structure, the surveys provide evidence of the discriminating potential of the MPOC, comparing the perceptions of parents who do or do not have a care coordinator, and comparing recipients of a home nursing service with matched users of general services. Conclusions The MPOC can be used as a measure of outcome for child disability services of differing organizational structures. [ABSTRACT FROM AUTHOR]

Children with cerebral palsy and severe speech disorders have been described as passive communicators, whose conversation partners control and dominate interaction. This paper studies the effects of speech intelligibility on interaction between mothers and their children with cerebral palsy to examine if similar patterns of child passivity and adult domination are also observed in dyads in which children are physically dependent but naturally intelligible to their parents. Two groups, each of 20 children who had four-limb cerebral palsy and who differed in their speech intelligibility, participated in the study. Children in Group 1 (whose interaction has been previously reported) were unintelligible to their parents out of context. Children in Group 2 had speech that was understood without situational cues. Children and their mothers were videotaped playing with a set of toys that had been shown to elicit from non-disabled children a full range of the conversational moves and speech acts targeted in the study. Videotaped interaction was transcribed and coded at three levels to show conversation structure, the pragmatic functions expressed and the method of communication used. Percentage distribution of coding categories was compared across groups using coda. Results showed that verbally intelligible children initiated more conversations and used their communication for a wider range of functions than did non-speaking children, for whom more restricted patterns of conversation were noted. Unexpectedly, few differences were observed between the two groups of mothers, who initiated and closed most exchanges. Implications for intervention are discussed. [ABSTRACT FROM AUTHOR]

Children with physical impairments who cannot use intelligible speech are often recommended augmentative and alternative communication (AAC) systems. In England and Wales, it is usually the job of speech and language therapists to support development in AAC skills. This paper reports findings from discussion with children and young people who use AAC systems concerning their attitudes and opinions towards the organization of speech and language therapy, the role of the speech and language therapist in school and issues concerned with AAC systems themselves. Six young adults and 17 children from London education authorities were interviewed on a one-to-one basis and in focus groups. Children were interviewed who had a communication aid incorporating at least 20 symbols and/or pictures and/or written words, language understanding at the two-word level and above, i.e. they demonstrated understanding of adult requests with at least two information carrying words. For children using communication aids, it is conceivable that their communication systems do not contain appropriate symbol vocabulary to express complex ideas, opinions and feelings. Consequently, a symbol-based interview tool was designed to allow children to express complex issues through visual means. Most children interviewed reported that their AAC system was useful to them. Further analysis of opinions revealed that negative attitudes towards AAC systems were primarily associated with operational issues (technical skills required to operate an AAC system) and issues of self-image/identity, and to some degree, with a lack of perceived benefit in interaction. In apparent contrast to therapists' preferred models of working, children and young people identified a preference for therapy organized on a one-to-one basis targeting linguistic and operational skills. It is suggested that more acceptable and individualized design of AAC systems could have implications for their use in school and other contexts. The value of service users' views in service planning and evaluation are discussed. [ABSTRACT FROM AUTHOR]

Abstract Given the numbers of disabled children in Bangladesh and the lack of trained professionals, innovative forms of service delivery are required. The Bangladesh Protibondhi Foundation has developed an outreach parent training service based at two centres, one urban and one rural. Mothers are shown how to use pictorially based Distance Training Packages (DTP), which they take home. This paper presents findings concerning factors which seem to affect mothers’ attendance with their children at DTP advisory sessions. The study followed 47 children with cerebral palsy, aged between 2 and 5.5 years, over a period of around 18 months. The main factors predicting higher attendance were the child’s sex (i.e. boys were brought back more often), particularly in the rural area, and lower adaptation to the child reported by the mother. The problems described by mothers in using the DTP advisory service were economic (such as transport costs), cultural (such as mothers not being permitted out alone), and medical (such as the child having repeated fits). The implications for future service development are discussed. [ABSTRACT FROM AUTHOR]

This paper presents an in-depth analysis of the interaction between mothers and their severely physically disabled children who have motor speech disorders. The study was designed to partially replicate previous investigations, most notably those undertaken by Light et al., to examine if the patterns of conversation previously described were observed in interaction involving children of a wide age range. Twenty children who had four-limb cerebral palsy, with no diagnosed learning difficulties or sensory impairments, and who were between 2 and 10 years of age inclusive participated in the research with their mothers. Children's speech was unintelligible to their parents out of context and most had been provided with aided communication systems. Other carers were excluded from the research due to possible differences in interaction style. Conversation between mothers and children was videotaped in a standard play situation. The toys used to stimulate interaction had been shown to elicit the full range of communication skills targeted in the present study from nondisabled children. Videotaped interaction was coded to show the structure of conversation and the functions used. The mode of communication used by the children was also recorded. In addition, communicative functions were elicited from the children in a semi-scripted conversation with a clinician developed from that used by Light et al. Structural moves and communicative functions used by mothers and children were examined using mean proportions. Sequential analysis of mother-child interaction was also undertaken at both levels to investigate the patterns that recurred in conversation. Results support those obtained in previous studies, showing restricted conversation patterns and high levels of maternal directiveness. Mothers initiated most communicative exchanges, asking many questions and issuing many requests for attention, objects or activities. Children across the age range produced more response moves than any other move type. Their responses contained yes/no answers and acknowledgements, and to a lesser extent provisions of information. When children did produce communicative functions other than simple confirmation, denials and acknowledgements, they were often not fully understood and were followed by requests for clarification by the mothers. Children produced a wider range of communicative functions in the semi-scripted elicitation conversation with the clinician than in conversation with their mothers (z=3.52, p=0.0002). The results obtained support those of previous research and suggest that interaction for children with severe motor and speech impairments becomes 'fossilized', changing little throughout childhood. Findings support the two-pronged approach to intervention for children using augmentative communication systems that is now developing. Intervention should focus not only on the children, teaching them how to use their augmentative systems and to produce a full range of conversation skills, but also should focus on their carers. Training for carers aims to increase their interaction skills, teaching them how to facilitate and expand children's communication skills. [ABSTRACT FROM AUTHOR]

SummaryChildren with multiple disabilities present complex management problems, both for their families and for the professionals involved in their care. For any one child, the list of functional and medical problems that need to be addressed is frequently reflected in an even longer list of involved professionals, leading to conflicting advice and problems in co‐ordination of care. A hierarchical model for assessment and management is proposed, which highlights the interdependency of apparently different areas of functioning. The model aims to assist both parents and professionals in determining priorities, to improve interdisciplinary working, and to underpin staff training. Illustrative case studies indicate the importance of resolving issues in areas such as visual functioning, positioning and nutrition before integrated functions such as communication skills can be addressed successfully. [ABSTRACT FROM AUTHOR]

The article presents the views of parents about parenting and teaching of their children. It is generally agreed that practical advice and some training in teaching their child should form part of any programme of support offered to the family of a young mentally handicapped child. Cultural factors appear to be an influence; some parents may not share the assumptions upon which parent involvement programmes are based. Thus, parents have a variety of ideas about teaching, reflected in their style of interaction with the child. The author concludes that some parents, and particularly some mothers, will be 'on the same wavelength' as a professional worker offering a home-teaching intervention.

The author reflects on improving mental health transitions for young people with autism spectrum disorder. She suggests that there is no evidence on how to facilitate transitions for young people moving from child to adult mental health services. She argues that effective and personalized transition plans for health care need to be developed to support young people with autism spectrum disorder as they enter into early adult life.

BACKGROUND: Child behavioural problems in epilepsy originate from a poorly understood interplay between intrinsic, family and social factors. METHODS: We re-analysed data from a randomized controlled trial of antiepileptic treatment in rural India, using regression analysis to find risk factors for behavioural problems. RESULTS: Parental satisfaction with social support was positively and independently correlated with child behavioural problems (P=0.03). CONCLUSION: Our findings suggest parents' interactions within their informal social support network, contrary to expectation, may increase risk for behavioural problems in their children. We suggest a possible explanation for this correlation as well as follow-up studies to investigate the social support-as-risk factor hypothesis. [ABSTRACT FROM AUTHOR]

The article presents the author's thoughts on pioneers in the field of services for children with intellectual disabilities with a focus on clinical psychologist Peter Mittler, author of the book "Thinking Globally, Acting Locally: A Personal Journey." Clinical psychologists Alan Clarke and his wife Ann Clarke, authors of the texbook "Mental Deficiency: The Changing Outlook" are mentioned. The influence of pioneers in this field on public policy and practice is noted.

The article discusses various reports on infant and child care published within the issue.

Change blindness refers to the difficulty most people find in detecting a difference between two pictures when these are presented successively, with a brief interruption between. Attention at the site of the change is required for detection. A number of studies have investigated change blindness in adults and children with autism spectrum disorders (ASD). Some have produced evidence that people with ASD find changes to social stimuli harder to detect and changes to non-social stimuli easier to detect, relative to comparison participants. However, other studies have produced entirely contradictory findings. There is a need for consistency in methodology to aid understanding of change blindness and attentional processes in ASD. Here, we replicate a change blindness study previously carried out with typically developing (TD) children and adults and with adults with ASD. Results reveal attenuated change blindness for non-social stimuli in children with ASD relative to TD norms. Our results are interpreted, alongside others' findings, as potentially indicative of a complex relationship between different influences on attention over time., (©2011 The British Psychological Society.)

Background: Recent estimates concerning the prevalence of autism spectrum disorder (ASD) suggest that at least one in 200 children is affected. This group of children and families have important service needs. The involvement of parents in implementing intervention strategies designed to help their autistic children has long been accepted as helpful. The potential benefits are increased skills and reduced stress for parents as well as children., Methods: This research review focused on interventions for children aged 1-6 years, and was carried out using systematic methodology: a comprehensive search of psychological, educational and biomedical databases, as well as bibliographies and reference lists of key articles, contact with experts in the field, and hand search of key journals. Only studies which involved a concurrent element of control were included., Results: The review found very few studies that had adequate research design from which to draw conclusions about the effectiveness of parent-implemented early intervention. Both randomized and controlled studies tended to suggest that parent training leads to improved child communicative behaviour, increased maternal knowledge of autism, enhanced maternal communication style and parent child interaction, and reduced maternal depression., Conclusion: It seems that parent training can successfully contribute to intervention for young children with ASD. However, the review highlights the need for improved research in this area.