Health: General and Specific Health Issues - Wiley Online Library

Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities

Theme: Health: General Health and Specific Health Issues Symposium 1.1 Diabetes and Intellectual Disabilities The view and experiences of professionals caring for adults with intellectual disabilities and type 2 diabetes M. Brown ([email protected]), S. Macrae, T. Karatzias, L. Taggart & R. Northway Faculty of Health, Life and Social Sciences, Edinburgh Napier University, Edinburgh, UK Aim: The aim of the study was to explore the views and experiences of professionals when caring for adults with intellectual disabilities (ID) with type 2 diabetes. Method: Structured interviews were conducted (n = 30), with professionals from primary care, specialist diabetic services, specialist ID health services and community support workers involved in the treatment of adults with ID. Data were analysed to identify key themes. Results: Professionals have limited education, knowledge and skills and face barriers in relation to communication, capacity and consent to treatment, making individualised adjustments to meet care needs, the management of diabetes and lack networks with other professionals involved in care. Specialist ID services lack knowledge about diabetes, management of diabetes and the risks and potential complications. Conclusion: Professionals need shared education about type 2 diabetes and the needs of people ID and to develop joint working. Examples of collaborative working across services must be shared.

Understanding the potential of pre-diabetes screening to predict future type 2 diabetes among people with intellectual disabilities P. McCallion ([email protected]), R. Carroll & M. McCarron University at Albany, USA Aim: The study aimed to understand the potential of a pre-diabetes screening questionnaire developed for the general population to predict onset of type 2 diabetes among people with intellectual disabilities (ID). Method: Data were drawn from both Wave 1 and Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging. Screening data from Wave 1 identified those without a type 2 diabetes diagnosis as being at risk. Annual conversion of those at risk was then examined using Wave 2 data. Results: 85% of those participants without a type 2 diabetes diagnosis were identified as being at risk. This reflects high rates of obesity and low rates of physical activity. Rates of conversion at Wave 2 were lower than the annual rate of 10% reported for the general population using the same risk test. Conclusion: The high levels of risk for type 2 diabetes among people ageing is of serious concern and lack of conversion data needs to be examined further to determine if this is about poor case finding and follow-up rather than a differential outcome.

A study protocol for a pilot RCT of a structured education programme (DESMOND-ID) for adults with intellectual disabilities and type 2 diabetes L. Taggart ([email protected]), M. Truesdale-Kennedy, M. Carey, L. Stacey, P. Madelia, J. Scott, V. Coates, M. Brown, R. Northway, B. Bunting & M. Clarke University of Ulster, UK Aim: We explored whether we could design an RCT to test if DESMOND-ID is more effective than usual care in adults with intellectual disabilities (ID) to reduce Hb1Ac. Method: The RCT is a two armed, individually randomised, pilot trial in adults with ID and type 2 diabetes, and their carers comparing the DESMOND-ID programme with usual routine care. 60 adults with mildmoderate ID from Northern Ireland, Scotland and Wales will be recruited: 20 participants from each country. Participants will be assigned to 1 of 2 conditions using a computerised random number selection system. The DESMOND-ID programme is based on amendments made to the original programme. A range of data will be collected from the adults with ID (bio-medical data, psycho-social and self-management strategies) and from their family/paid carers. Focus groups with all the participants will assess the acceptability of the intervention. Results: Results are not yet available. Conclusion: The lack of planning appropriate structured education programmes and educational materials for adults with ID and type 2 diabetes will lead to additional health conditions developing. There are significant benefits to be gained in adapting structured education programmes shown to be effective in the non-ID population for people with ID.

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Type 2 diabetes education for adults with intellectual disabilities M. Truesdale-Kennedy ([email protected]), L. Taggart, M. Carey, L. Stacey, P. Madelia, J. Scott, V. Coates, M. Brown & R. Northway University of Ulster, UK Aim: Our goal was to adapt a self-management type 2 diabetes education programme developed for the non-disabled population (DESMOND) for use with adults with intellectual disabilities (ID) and their carers. Method: Two iterations of the DESMOND programme were delivered to thirteen adults with ID and eight carers. This programme was delivered over 6 weeks. Video recordings, focus groups and evaluation sheets were used to examine the suitability of the curriculum and resources. Results: The feedback from the first iteration of the programme illustrated that DESMOND needed to be adapted to accommodate the adults’ literacy skills. The service users also required the support of their carers to develop the skills to self-manage their diabetes at home focusing on diet, exercise and medication. The second iteration of the programme supported the adaptations made to the DESMOND-ID programme. Carers need a separate day to prepare to engage effectively to help support the adults to learn the objectives of the DESMOND-ID programme. Conclusion: Adults with ID can be educated to develop the skills to selfmanage their type 2 diabetes. It is important to have the support of carers. Such self-management programmes developed for the non-disabled population need adapting and testing for adults with ID.

Symposium 1.2 Cognitive Functioning in People with IDD Context-specific memory in children with attention deficit hyperactivity disorder K. Kerns ([email protected]) & S.J. Macoun Department of Psychology, Clinical Neuropsychology Program, University of Victoria, BC, Canada Aim: Contextual memory is a term that refers to where and when information is learned, as opposed to the content of memory. Contextual memory is dependent on frontal brain systems and related executive control systems. Children with attention deficit hyperactivity disorder (ADHD) are known to have deficits in aspects of executive control and may also have more difficulty in contextual aspects of memory. This study compared typically developing children and those with ADHD on measures of contextual memory (source and recency memory) versus memory recognition performance. Method: 36 children (ages 6–13) with and without ADHD were compared on intellectual ability and two contextual memory measures, one assessing source recall and one the recency of learning new information. Results: Children with ADHD performed similarly to control participants on recognition tasks, but differed on the contextual memory tasks. Children with ADHD outperformed control participants on recalling the source from which they had learned information, but performed more poorly than controls on time-based recency judgments. Contextual memory was not related to IQ. Conclusion: Children with ADHD’s similar capacity to recognize new information, but differences in performance on contextual aspects of memory mirror neuroscience research supporting dissociable contextual memory systems.

Prospective memory in traumatic brain injury and intellectual disability: relationships with working memory and memory awareness C. Mateer ([email protected]) Department of Psychology, University of Victoria, BC, Canada Aim: The ability to remember to carry out future intentions (prospective memory) is important for initiating and carrying out everyday tasks. Children and adults with a variety of acquired and developmental conditions demonstrate difficulties with prospective memory. Method: A study of prospective memory in 20 adults with traumatic brain injury (TBI) and 20 controls was undertaken. The groups completed prospective memory tasks using a game entitled ‘Navigating Your Week’, designed to create naturalistic intentions that would prompt different actions in response to various cues. Results: Participants with TBI demonstrated more prospective memory failures and loss of content errors than controls, with no impact of injury severity. Prospective memory failures were highly correlated with lower scores on measure of working memory (executive function). The TBI group’s self-ratings of memory were not significantly related to their prospective memory performance. Conclusion: Results will be compared to the literature on prospective memory in individuals with intellectual disability, as well as in normal aging, where similar associations of prospective memory with working memory have been demonstrated and where self-ratings of memory are largely unrelated to scores on prospective memory tasks. Implications for prospective memory difficulties for everyday function and suggestions for management strategies to compensate for prospective memory difficulties will be discussed.

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Recall and source monitoring in children with and without fetal alcohol spectrum disorders J. Pei ([email protected]), K. Kully-Martens, J. Job & C. Rasmussen University of Alberta, Edmonton, AB, Canada Aim: This study examined overall source monitoring ability and performance profiles of children with Fetal Alcohol Spectrum Disorders (FASD) compared to controls. Method: Participants included 19 children with FASD and 38 typically developing children (aged 6 –12 years). Children were presented with auditory word lists and were required to recall the source of words for reality, external, and internal source monitoring tasks. Results: Children with FASD showed poorer performance than controls across all three conditions in both recognition memory and memory for source. However, both groups exhibited a comparable pattern of performance across conditions. Specifically, performance was lowest on the internal task and highest on the reality task. Conclusion: Information about source monitoring deficits further delineates the intricacies of memory deficits in FASD, and has implications for both assessment and intervention.

Executive function and attention profiles in preschool and elementary school children with autism spectrum disorder and attention deficit hyperactivity disorder J. Sinzig ([email protected]), I. Vinzelberg, D. Evers & G. Lehmkuhl Germany Aim: Executive function and attention problems in autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) are not well described in preschool or elementary school children. The goal of this study was to compare executive and attention functions in an ADHD, an ASD, and a typically-developing group. Method: Eighty-five children aged 4 to 9 years old with ADHD (n = 30) or ASD (n = 26) and healthy children (n = 29) were included. Psychopathology was evaluated using the KIDDIE-SADS, the CBCL, and DSM-IV-symptom checklists for ADHD. Assessment of neuropsychological functioning included tasks from the Amsterdam Neuropsychological Tasks (ANT; GoNoGo, shifting attentional set visual and sustained attention objects). Results: A MANOVA with age and IQ as covariates revealed statistically significant group effects for the variable ‘flexibility errors compatible’. Effect sizes showed deficits of children with ASD and ADHD in inhibition and impairments in sustained attention in ASD children. Pearson correlations revealed associations between social problems and aggressive behavior with all three tasks in the ADHD group and between thought problems and sustained attention in the ASD group. Conclusion: Our hypothesis was partly confirmed as ADHD children showed more deficits in inhibition tasks than healthy children. There was no evidence that children with ASD have a specific profile in comparison to ADHD children.

Symposium 1.3 Longevity and Mortality in People with IDD Findings of the confidential inquiry into premature deaths of people with ID in England P. Heslop ([email protected]), A. Marriott, M. Hoghton, P. Fleming, P. Blair & L. Russ Norah Fry Research Centre, University of Bristol, UK Aim: In England, a Confidential Inquiry was held from 2010 to 2013 into premature deaths of people with intellectual disabilities (ID). This paper presents the key findings. Method: The Confidential Inquiry investigated the deaths of all people with ID (aged 4 years and older) who had been living in an area of South West England. Results: The deaths of 247 people with ID were reviewed. Their median age of death (65 years for men; 63 years for women) was significantly less than for the general population (78 years for men and 83 years for women). Almost a quarter (22%) of people with ID were under the age of 50 when they died, compared to 9% in the general population. Over a third (37%) of the deaths reviewed by the Confidential Inquiry met the UK Office for National Statistics’ criteria of avoidable deaths that were amenable to good quality healthcare. The most common issues identified in relation to premature deaths were delays or problems with diagnosis or treatment. Conclusion: The Confidential Inquiry concluded that the quality and effectiveness of health and social care given to people with ID was deficient in a number of ways and contributed to some premature deaths.

Mortality surveillance in adults with intellectual disability: findings from the United States E. Lauer ([email protected]) & A. Bonardi Eunice Kennedy Shriver Center, University of Massachusetts Medical School, Charlestown, MA, USA Aim: To describe mortality patterns for adults with intellectual disabilities (ID) using state-level administrative data in the United States (US).


Method: Information about deaths from three comparable state intellectual and developmental disability service systems serving over 80 000 adults were analyzed and compared to the US adult population. Results: Collectively, adults with ID have a lower life expectancy at birth by over 10 years compared with US residents. Causes of death suggest a lower burden of some cancers in adults with ID compared to US population. In contrast this population experiences a significantly increased burden of chronic conditions including Alzheimer’s disease, and respiratory conditions including viral pneumonia and aspiration pneumonia. Conclusion: Multiple factors contribute to premature mortality for people with ID. Modifiable contributors to mortality may influence the observed patterns of mortality in the population with ID. Mortality surveillance can be a highly useful and efficient strategy in resource-limited settings for effectively targeting health and service improvement strategies. Recent examples exist of effective interventions on both individual and policy levels to reduce morbidity and mortality based upon mortality surveillance in this population.

Understanding increasing longevity for people with intellectual disability: findings from New York State administrative data P. McCallion ([email protected]), J. Hasting & M. McCarron University at Albany, USA Aim: To understand how longevity has changed since 1998 for people with intellectual disabilities (ID) identified in New York State administrative data. Method: New York State maintains data on all known people with ID largely through tracking assessment, health and service delivery encounters. To control for the differential impact of younger deaths and to support comparability with prior data, average age of death for persons aged 40 and older was extracted for each 5 year period from 1998 and was then graphed. The age of death every 5 years was then compared to the 66.1 years previously reported for the period 1989–1998. Results: Average age of death for people with ID in New York has continued to increase but is not yet equal to the general population. Causes of death continued to mirror those reported for the general population despite differences in reported long standing chronic conditions. Conclusion: It is likely that further increases in longevity will require greater attention to unique and manageable health concerns among people with ID.

To understand differing patterns of age of death by gender and level of intellectual disabilities for people with intellectual disability in Ireland M. McCarron ([email protected]), C. Kelly, R. Carrol & P. McCallion Trinity College Dublin, Ireland Aim: The study was undertaken to understand differing patterns of age at death by gender and level of ID, for people with intellectual disability (ID) in Ireland. Method: For the years 2006 through 2012 data on deaths drawn from the National Intellectual Disability Database in Ireland was categorized by age groups (0–19; 20–34; 35–54 and 55 + years), gender and level of ID (mild, moderate and severe/profound) and then age of death was ascertained using a standard database question: ‘reason for removal from database’. This question provides year of death, not the actual date, but an approximate age of death may be calculated. Results: As expected the overall age of death was influenced by relatively high numbers of younger deaths but for those who died after age 54 the age of death was approaching that of the general population. Younger death appeared more common in males. Conclusion: In the consideration of age of death for people with ID a more robust and interesting picture emerges when the data is examined beyond a simple overall average. Further work is needed to understand the different reasons for death in each age cohort and level of ID and by gender.

Symposium 1.4 Family Involvement and Child Behaviour Family management ability among parents of children with autism spectrum disorder R. Hock ([email protected]), I. Kim & A. Kinsman University of South Carolina, College of Social Work, Columbia, SC, USA Aim: We surveyed parents of children with autism spectrum disorder (ASD) to examine the association between family management ability (FMA) and parental adherence to ASD treatments, and to explore the contributions of child characteristics and available resources to FMA. Method: Questionnaires were distributed to parents of children with ASD (n = 274). We used multiple linear regression to model the association between the FMA subdomains and parental adherence to medication and behavioral treatments for ASD. We then explored the extent to which child characteristics and available resources contributed to FMA subdomains. Results: Regression results indicate that the FMA subdomains are associated differently with behavioral and medication treatment adherence. For behavioral treatments, lower condition management effort, lower

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family life difficulty, lower condition impact, greater condition management ability and the child experiencing a more ‘normal’ life are associated with greater parent adherence. For medication treatments, greater condition management ability, lower family life difficulty, and lower condition impact are associated with greater parent adherence. Child symptoms and social support were consistently associated with FMA subdomains. Conclusion: Improving FMA may increase parents’ adherence to ASD treatments and improve child treatment outcomes. This study identifies several risk and protective factors that can be targeted to improve FMA.

How to engage fathers to increase their involvement while taking part in an early intervention-based family support programme G. Toth ([email protected]), Y. Ozaki & M. Saito Sagami Women’s University, Sagamihara City, Japan Aim: This study examines the effect of an early intervention-based family support programme on parent involvement, particularly how it increases fathers’ involvement in development support of their child with intellectual and developmental disability (IDD). Method: Participants were parents of young children with IDD (N = 20). During the 18-month period of sensory-motor dominated early intervention programme with children, parents were asked to actively participate in group activities that needed physical strength, stamina, agility, speed and peer-work between parents. Parents were asked to complete an ‘activity chart’ for home use and record their activity type and engagement frequency with their child everyday in monthly sheets. Results: Nearly 80% of parents interviewed said that they felt ‘very involved’ in their child’s development since they joined the programme. Two thirds of fathers said that they would like to ‘get more involved’ in their child’s development progress. All fathers acknowledged increased involvement (from 10% to 33%, respectively) at home using the ‘activity chart’. Conclusion: Further research is needed to address the questions of fathers’ involvement in child rearing and the future direction of early intervention practice to establish good working relationships between families and early years centres.

Parenting young children with an intellectual disability: parenting practices, relationships and children’s behaviour problems V. Totsika ([email protected]), R.P. Hastings, E. Emerson & D. Vagenas Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick, UK Aim: The study describes parenting practices in families of young children with an intellectual disability (ID) compared to families of children without ID and explores the concurrent and longitudinal association of parenting practices with behaviour problems in children with ID. Method: We identified 516 five-yearold children with ID among participants of the British Millennium Cohort Survey. We compared parenting practices (discipline, home chaos, parent-child relationship) between families of children with and without ID at age 3. We modelled the association between parenting practices at 3 years with behaviour problems at 3 and 5 years in families of children with ID (structural equation modelling). Results: Compared to parents of children without ID, parents of children with ID used discipline less frequently, but reported a more negative relationship with their child. Among children with ID, discipline, and home chaos had no longer-term impact on behaviour problems, whereas relationship quality did: closer relationships were associated with fewer concurrent and later child behaviour problems. Increased parent-child conflict was associated with greater concurrent and later behaviour problems. Conclusion: Parenting programs in ID could target parent-child relationship quality as a potential mediator of improvement in children’s behaviour problems.

The impact of child characteristics on parental perceptions of challenging behaviour J. Waite ([email protected]), C. Oliver, J. Moss, K. Eden & L. Wilde Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Edgbaston, Birmingham, UK Aim: Parental perceptions of challenging behaviour may have an impact on parental well-being, help-seeking and adherence to interventions. A number of child characteristics typical of behavioural dysregulation (impulsivity, overactivity, repetitive behaviour) have been associated with presence of challenging behaviour but few studies have explored how these characteristics affect parental perceptions of challenging behaviour. Method: Sixty-five parents completed a questionnaire pack that included a measure of parental perceptions of challenging behaviour, locus of control, attributions about behaviour, psychological distress, and the extent of challenging behaviour. Data on child impulsivity, over-activity, repetitive behaviour and autism spectrum characteristics were included. Results: In agreement with previous studies, challenging behaviour was strongly associated with child behavioural


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dysregulation (impulsivity, repetitive behaviour, overactivity). Behavioural dysregulation variables were independently related to specific parental perceptions. Parents whose children scored highly on impulsivity rated their child’s behaviour as less predictable and felt less responsibility for the behaviour. Conclusions: Research should focus on differentiating between parental perceptions associated with challenging behaviour (e.g. self-injurious behaviour) and markers of behavioural dysregulation. Differences could have implications for clinical intervention. Research should explore whether some parents might be making an accurate appraisal of their child’s dysregulation, which could impact on their adherence to interventions.

Symposium 1.5 Bereavement and People with IDD Exploring responses to bereavement and loss with people with profound intellectual and multiple disabilities using cultural resources B. Fornefeld ([email protected]) Faculty of Human Siences, University of Cologne, Cologne, Germany Aim: The aim of the project is to find out how cultural offers can be used to accompany people with profound intellectual and multiple disabilities (PIMD) when experiencing bereavement and loss. Method: Nearly all people with PIMD cannot speak and can often only react physically to bereavement and loss. It is difficult to recognize their feelings and to accompany them appropriately. Usual methods of bereavement support are not suitable for this group of persons. Therefore, we reconstructed their individual living conditions on the basis of qualitative studies in order to identify the causes of their bereavement behavior. Then, we edited poems and stories of bereavement in a way that they could be sensually experienced by individuals with PIMD. Video analyses and observation forms verified that the bereavement story and the method of narration appealed to the target group and increased their well-being. Result: First results show that mourning people with PIMD can be involved in cultural offers and that these offers help them to relax. Conclusion: Already existing bereavement literature of different cultures can be adapted and then be used to accompany bereavement and loss experiences of people with PIMD.

Creation of a bereavement learning resource and the benefits of collaborative working in this process L. Lambe ([email protected]), H. Young & B. Garrard PAMIS, University of Dundee, Dundee, UK Aim: PAMIS’ research project in the area of bereavement and loss covered two areas. The first area focused on bereaved individuals with profound intellectual and multiple disabilities (PIMD), while the second area focused on bereaved parents and carers. The research aimed to develop resources which could be used to support both groups of bereaved people. Method: Focus groups enabled parents, carers and professionals to share their experiences of bereavement and loss. Results: Information gathered from these meetings provided the foundation for the development of a Learning Resource Pack. The pack comprises two sections; one exploring the experiences of bereavement and loss for people with PIMD and the second, exploring the needs of bereavement parents and carers. Conclusion: The Bereavement and Loss Learning Resource material makes suggestions about how to support bereaved people with PIMD and makes recommendations about the support of bereaved parents.

Using a multi-sensory memory box to explore bereavement and loss issues with a young woman with profound intellectual and multiple disabilities H. Young ([email protected]), B. Garrard & L. Lambe PAMIS, University of Dundee, Dundee, UK Aim: Barriers of communication and disenfranchised grief of people with profound intellectual and multiple disabilities (PIMD) mean that they do not receive the support and understanding they require, which can lead to emotional and behavioural difficulties. There is a great need for the development of resources which can be used to explore bereavement and loss issues with people with PIMD. Method: This study explored the use of a multisensory memory box developed for Fiona, a young woman with PIMD who had experienced the death of her brother. Results: The developmental process is described; in particular the involvement of those around Fiona in piecing together her memory box. The benefits of using such an approach have been farreaching within Fiona’s network of support. Conclusion: Multi-sensory memory boxes have value within the bereavement process for people with PIMD.

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1.6 Physical Health Issues and People with IDD Health problems in adults with profound intellectual and multiple disabilities: parents’ insights into diagnosis, treatment and management D. Chadwick ([email protected]) Faculty of Education, Health & Wellbeing, University of Wolverhampton, UK Aim: This study aimed to investigate the communication, health and healthcare of adults with profound intellectual and multiple disabilities (PIMD). It explores the impact of communication on diagnosis and treatment of physical and psychological health problems and recognition of wellbeing. It identifies parental views on the experiences of their adult children when receiving care from health services and what caregivers believe would improve health services. Method: This exploratory qualitative study employed semi-structured interviews to gather data, from a purposive sample of 16 family caregivers. Data was analysed thematically and trustworthiness checks were conducted. Results: A key contributing factor in addressing the health issues of adults with PIMD is the difficulty carers have identifying and distinguishing behavioral indicators of wellbeing, leading to difficulties identifying, treating and managing their health. Variability was evident in the signs and indicators identified by family carers and in the quality of support and trust given to people and their carers. Awareness of PIMD was often limited. Specific themes and experiences will be presented. Conclusion: Despite their increased propensity for complex health problems, identifying health problems and accessing adequate healthcare can still be problematic for persons with PIMD. Suggestions as to how to improve identification and healthcare are given.

Guidelines of the European Association of Intellectual Disability Medicine on physical and mental health issues F. Ewals ([email protected]), P. Martin, T. Dorn & R. Banks Erasmus MC, University Medical Center, Rotterdam, The Netherlands Aim: The European Manifesto on basic Standards of health Care For People with Intellectual Disabilities (ID) was initiated by MAMH, the European Association of Intellectual Disability Medicine. It has been accepted as a standard by many European countries. The next step will be formulating evidence based European guidelines for important medical conditions. Method: The Health Targets (Beange, JIDD 1999) are a starting point of the guidelines intended for all doctors working for persons with ID in all European countries. They will be compact, practical and will not include expensive resources. Specialists are responsible for the first draft. An international steering committee will monitor the principles. The guidelines will be available in many languages. Results: The first guidelines, about visual impairment and psychopharmacology, will be presented at the conference, including dissemination strategies. Nearly 20 guidelines will be completed in 2018. Conclusion: Formulating European standards for the management of important medical conditions for persons with ID can be an effective way of reducing health disparities within the European Union. By disseminating guidelines, MAMH is moving from the more policy-oriented goals of the Manifesto to improvement of everyday health care of persons with ID.

Physical health issues in persons with severe or profound intellectual and multiple disabilities: a systematic review E.A. van Timmeren ([email protected]), C.P. van der Schans, H.M.J. van Schrojenstein Lantman-de Valk & A. Waninge Hanze University of Applied Sciences Groningen, Groningen, The Netherlands Aim: People with severe or profound intellectual and multiple disabilities experience a wide range of complex health problems. However, the prevalence of different types of health problems and their impact on quality of life is unclear. The aim of this systematic review was therefore to determine the type and prevalence of physical health problems in adults with severe or profound intellectual and multiple disabilities. Method: A systematic review was conducted by searching Pubmed, Cinahl, Web of Science, Embase and Psyc INFO databases in the period 2004–2013. Results: We identified 5682 studies. 26 studies met our inclusion criteria. The quality of the included studies was assessed using the SIGN-50 methodology checklist for cohort studies and the risk of bias tool designed by Hoy et al. (2012) for cross-sectional studies. Conclusion: This review reveals knowledge about the prevalence of different types of health problems and their impact on quality of life in adults with severe or profound intellectual and multiple disabilities. Based on these findings, a screenings instrument of health problems will be developed.


Symposium 1.7 Health and People with Severe and Profound IDD Assessment of pain in persons with profound intellectual and multiple disabilities: analysis of reliability and validity of the REPOS A. Bruns ([email protected]), E. Kreukniet, W. Post & A. van der Putten ’s Heeren Loo, Advisium, Location Midden Nederland, The Netherlands Aim: The purpose of this study was to analyse the psychometric properties (reliability and validity) of the Rotterdam Elderly Pain Observation Scale (REPOS) in daily practice in adults with profound intellectual and multiple disabilities (PIMD). The REPOS can be a valid and reliable instrument for this specific target group. Method: In total, 100 adults (>18 years) with PIMD were included. A 2-minute video-recording was made of each participant during daily activities in which it is assumed pain is prevalent. The inter-rater reliability, intra-rater reliability, and construct validity of the REPOS were analysed. Based on a literature review 5 items were added to the REPOS and included in this reserach and form an adapted version of the REPOS. The construction and validation of the adapted REPOS will be done by means of the item response theory. To assess the external validity of the adapted REPOS, REPOS scores were compared to those on the NRS (numeric pain rating scale) and the FACS (Facial Action Coding System), a known valid instrument to assess pain. Results: Results are not yet available. Conclusion: Implications of the findings will be discussed.

Developing an online resource toolkit to improve practice in the delivery of invasive procedures to people with profound intellectual and multiple disabilities J. Hogg ([email protected]) White Top Research Unit & PAMIS, University of Dundee, Dundee, UK Aim: Our aim was to develop an on-line resource presenting information to enable care providers, including family carers, to deliver invasive health procedures effectively, humanely and safely to people with profound intellectual and multiple disabilities (PIMD). Method: Research into the factors that preclude the delivery of invasive health care procedures to people with PIMD has drawn attention to the need for an accessible web-based resource. This brings together information on good practice, training, service design and effective interagency collaboration and parent carer involvement. Results: The web-based resource toolkit has been established but permits the ongoing addition of new and updated material. The resource has been evaluated through presentation to relevant carer groups. Conclusion: In the context of the wider national strategy to ensure all individuals with PIMD receive appropriate health care in all service settings, a significant contribution is now being made through the invasive procedures website.

The actual condition of medical care at home for persons with medically-dependent severe motor and intellectual disabilities in Japan T. Matsubasa ([email protected]), K. Sawano, M. Shiota & H. Mitsubuchi Kumamoto University Hospital, Japan Aim: In Japan the number of patients with medically-dependent severe motor and intellectual disabilities living in parents’ homes is increasing due to limited number of beds in hospitals. Understanding the actual condition of the medical care at home is needed to better support the patients. Method: We administered a questionnaire on the content of medical care and support from the local government for the patients in Japan. Results: Of the 45 who responded, 30 (average 12.5 yrs) were receiving full medical care. Among these patients 19 were receiving suction of sputa; 23 tube feeding, and 11 tracheostomic care. In most cases medical care was given by family members, with four cases being shared by nurses. Fifteen patients possessed vacuum aspirators, 5, pulseoxymeters as benefit from each local government. Support from the local governments seemed to be useful. Conclusion: Home care workers with qualification for limited medical care are required to improve the quality of life of patients and family members.



Symposium 1.8 Behavioural Phenotypes and People with IDD People or trains? Visual preference for social versus non-social information in genetic syndromes H.R. Crawford ([email protected]), J. Moss, C. Oliver, T. Elliott, G.M. Anderson & J.P. McCleery Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Edgbaston, UK Aim: Fragile X, Cornelia de Lange, and Rubinstein-Taybi syndromes are associated with varied and unique profiles of impairments and abilities in social interaction. Research into other neurodevelopmental disorders has shown that differences in social processing maps onto differences in social behaviour. This study investigated spontaneous attention allocation to social versus non-social stimuli in individuals with Fragile X, Cornelia de Lange, and Rubinstein-Taybi syndromes. Method: Thirteen individuals with Fragile X syndrome, 14 with Cornelia de Lange syndrome, 19 with Rubinstein-Taybi syndrome, and contrast groups of 21 typically developing children and 22 typically developing adults were assessed using eye-tracking methodology. Participants passively viewed two video clips side-by-side. One video included a person (social) whilst the other included objects (non-social). Analyses included dwell times and first fixation to social versus non-social videos. Results: Preliminary dwell time analyses indicate that those with Fragile X syndrome look significantly less at social videos than typically developing adults only. Preliminary first fixation analyses further indicate that participants with Fragile X syndrome are more likely to fixate on a non-social video first than those with Rubinstein-Taybi syndrome. Conclusion: Preliminary results indicate subtle group differences in the allocation and maintenance of attention to social and non-social information.

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in ASD, and provide tentative evidence for the executive function theory of repetitive behaviour. Data from direct executive function assessments will be compared to the BRIEF-P profiles in the three syndromes to further understand the executive function profiles in these groups.

Atypical preference for adult social contact in children with Smith-Magenis syndrome L. Wilde ([email protected]), D. Silva & C. Oliver Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Edgbaston, Birmingham, UK Aim: Children with Smith-Magenis syndrome are commonly described as ‘attention seeking’, with a strong drive for adult attention and little interest in peers. In situations where adult attention is unavailable, challenging behaviour has been reported. Method: Social behaviour of children with Smith-Magenis syndrome (n = 10, mean age 9.98 years) was observed during one school day across a variety of settings and activities. Amount of looking towards and interactions with adults and peers was recorded. This was then compared with a mental age matched sample of children (n = 10, mean age 9.10 years) with Down syndrome. Results: Children with Smith-Magenis syndrome showed a greater preference for interactions with adults (over peers) than children with Down syndrome did, across a variety of settings. Conclusion: Assertions that children with Smith-Magenis syndrome seek adult attention to a greater extent than other children are supported.

Symposium 1.9 Fetal Alcohol Spectrum Disorder Refining the profile of social and sensory reinforcement in Angelman syndrome M. Heald ([email protected]), D. Adams, E. Walls, J. Trickett & C. Oliver Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK Aim: Angelman syndrome is associated with distinctive behavioural characteristics including frequent laughing and smiling, a strong motivation for adult interaction and a preference for sensory stimuli. Previous literature suggests compromised learning, associated with a loss of the UBE3A gene, relative to ability level. Given the heightened preference for specific stimuli in Angelman syndrome, examination of the comparative efficacy of social and sensory experiences as reinforcers to increase rate of learning in these individuals is warranted. Method: Twenty one children with Angelman syndrome (deletion: n = 14; non-deletion: n = 7) aged between 3 and 15 years participated. In structured reinforcer assessments, the effect of social and sensory rewards on the frequency of a targeted behaviour was examined. Results: All participants exhibited a higher frequency of target behaviour in the presence of a reward. The results highlighted variability in the efficacy of reinforcers across participants. This variability was partially accounted for by genetic subtype, with 85.7% of participants with non-deletion form reinforced by social stimuli compared to 28.6% of participants with deletion form. Conclusion: The results suggest that social and sensory stimuli function as effective reinforcers to increase the speed of acquisition in Angelman syndrome. The results also highlight potential genotype-phenotype correlations which warrant further investigation.

The relationship between executive function and repetitive behaviour in Cornelia de Lange syndrome V. Johnson ([email protected]), S. Beck, J. Moss, J. Waite, C. Stinton, K. Eden, L. Powis, R. Dowlen, L. Groves & C. Oliver Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK Aim: Cornelia de Lange syndrome is associated with repetitive behaviour and other autism spectrum disorder (ASD) symptomatology. This study examined the profile of executive function and its relationship with ASD symptomatology in Cornelia de Lange syndrome using both questionnaire measures and direct assessments. Method: The parents/carers of 100 individuals aged 5 to 47 years with ASD, Cornelia de Lange syndrome, Fragile X syndrome and RubinsteinTaybi syndrome completed the Behaviour Rating Inventory of Executive Function-Preschool Version (BRIEF-P) and the Social Communication Questionnaire (SCQ). Direct executive function assessments were conducted on 60 participants with Cornelia de Lange, Fragile X and Rubinstein-Taybi syndromes. Results: No significant differences were found across groups in BRIEF-P profiles but there were differences in the BRIEF-P and SCQ relationships across the groups. Comparisons between questionnaire and direct assessment results will be made to provide a richer understanding of the executive function profile in Cornelia de Lange syndrome compared to Fragile X and Rubinstein-Taybi syndromes. Conclusion: Questionnaire results suggest high levels of executive dysfunction in the three syndromes similar to those seen


Intellectual ability and adaptive functioning in individuals with fetal alcohol spectrum disorder: are they related? K.A. Kerns ([email protected]) & J. Pei Department of Psychology, Clinical Neuropsychology Program, University of Victoria, BC, Canada Aim: Individuals with prenatal alcohol exposure and resulting fetal alcohol spectrum disorder (FASD) vary along the spectrum of intellectual abilities with measured IQs varying from over 3 standard deviations below average to above average. In spite of measured IQ, individuals with FASD typically exhibit significant needs for support in the range of intermittent to extensive support 2 to 3 standard deviations below average on ratings of adaptive behavior. Indeed adaptive behavior and intellectual abilities are often poorly related. Method: A review of studies either investigating relationship between IQ and adaptive behavior or comparing individuals with FASD with below average versus average IQ was conducted. Results: Studies have demonstrated that in comparison of individuals with FASD across IQ levels, individuals with FASD have similar profile on several key cognitive processes including aspects of attention and executive function regardless of IQ. Indeed studies document that, children with lower IQ often have higher adapative function at young adulthood than those with higher IQs. Conclusion: FASD is a unique neurodevelopmental disorder in which levels of disability and adaptive function are more related to identification of FASD at an early age and aspects of executive function than traditional measures of IQ.

Adolescents with fetal alcohol spectrum disorder getting to graduation: inclusive education in action J. Pei ([email protected]) & C. Poth University of Alberta, Edmonton, AB, Canada Aim: Fetal alcohol spectrum disorder (FASD) presents unique challenges in the provision of intervention services. Early identification and intervention are crucial to optimally meet the needs of this group and prevent the development of secondary disabilities. Investigation into effective interventions for individuals with an FASD is in its early stages. Yet this group faces significant challenges as environmental and developmental expectations grow and high rates of adverse outcomes are reported for this population, including trouble with the law, mental health issues, increased drug and alcohol abuse, and increased risk of suicide. Method: The Wellness, Resiliency and Partnerships (WRaP) project serves adolescent with prenatal alcohol exposure by provision of ‘success coaches’ using strength-based supports, in a wraparound model to support students with academic success, engagement and social, emotional and physical well-being. Results: WRaP has resulted in increases in attendance and course completion, coaches data show decreases in expulsions from school, and students who are mentored to become engaged members of their schools and communities. Conclusion: Early evidence indicates that WRaP can have a positive impact on impacted youth.

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Process specific interventions in children with fetal alcohol spectrum disorder: inclusive education in action K. Kerns ([email protected]), J. Pei, S. Macoun, C. Rassmussen & M. Hutchinson Department of Psychology, Clinical Neuropsychology Program, University of Victoria, BC, Canada

Exploring the theoretical frameworks of health promotion for people with intellectual disabilities L. Hanna-Trainor ([email protected]), L. Taggart & E. McCaughan Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Co Antrim, UK

Aim: Children with fetal alcohol spectrum disorder (FASD) have significant deficits on aspects of executive function (including working memory and inhibition) and attention (sustained and selective) which result in impaired planning, poor judgment, difficulty delaying gratification, poor impulse control, and resulting academic and adaptive difficulties. This project focused on developing and employing a computer-based cognitive intervention focused on directly improving attention/executive funciton in children with FASD. Method: Within the school setting children completed a series of intervention materials that utilized a process-specific approach, the Caribbean Quest (CQ) to improve attention and executive function. The CQ intervention is a computer game that is delivered with a behavioural training component, focused on scaffolding children’s metacognitive strategies to improve performance on the game. Results: Children with FASD show improvements on several measures of working memory. Specifically, significant gains were seen on tasks of Counting and Listening Recall, Spatial Span and on a curriculum based Reading Fluency task (academic measure). Conclusion: Children with FASD can make gains in both the underlying cognitive processes of attention and working memory, and these gains can be generalized to classroom performance. Further studies examining the long-term utility of the intervention and underlying neural mechanisms of change are warranted.

Aim: The aim of this study was to explore the theoretical frameworks of health promotion for people with intellectual disabilities (ID). Method: A qualitative methodology was employed. Thirteen semi-structured telephone interviews were undertaken with a range of international academic, research, and clinical experts in health promotion to explore the theoretical frameworks of this topic applied to people with ID. Nine focus groups were then undertaken with staff, families and service users to ascertain their understanding of health promotion. Interviews were analysed using Newell and Bernard’s thematic content analysis framework. Results: A number of inter-related themes were identified: the facilitation of health promotion, enablement and the need for knowledge and personalisation, advocacy through sharing and collaboration, and mediation and the need to challenge attitudes to ensure equality. Conclusion: Health promotion involves the combination of a top-down approach to develop public policy and re-orient the focus of health services. Although a bottom-up approach is also required to develop the personal skills of all (service users, families, staff, healthcare practitioners and the wider community) to strngthen community support. These findings highlight the lack of a health promotion theoretical framework that is required to improve the health of people with ID.

Mathematics intervention for children with fetal alcohol spectrum disorder K. Kully-Martens ([email protected]), J. Pei, J. Kable, C. Coles, G. Andrew & C. Rasmussen University of Alberta, Edmonton, AB, Canada Aim: Children with fetal alcohol spectrum disorder (FASD) have particular difficulty with mathematics. The Math Interactive Learning Experience (MILE) is an intervention for improving underlying skills important for math. This study replicates and extends the MILE program. The MILE includes individualized tutoring with a focus on habilitation of underlying cognitive functions; working memory, visual-spatial skills, and graphomotor function. This project extended from the original RCT study in the following ways: it was implemented into school settings instead of a laboratory; it was compared to a social skills intervention versus a ‘sham’ intervention; and it analysized improvement of underlying cognitive abilities (i.e, executive function, working memory, visualspatial skills) in addition to math achievement. Method: 17 children ages 4–10 with prenatal alcohol exposure were randomly assigned to either a social skills intervention or the MILE program. Those assigned to the MILE program recieved 6-weeks training. All children were assessed on measures of math, social skills, and other cognitive abilities pre and post the intervention. Results: Children completing the MILE made significantly greater gains on measures of math and showed improvement in tasks of executive functioning. Conclusion: Children with FASD and math difficulties can make and maintain significant gains in math using MILE.

Symposium 1.10 Healthy Living and Health Promotion Staffs’ knowledge and attitudes towards the health promotion needs of people with intellectual disabilities L. Hanna-Trainor ([email protected]), L. Taggart, E. McCaughan & G. Adamson Institute of Nursing and Health Research, University of Ulster, Newtownabbey, Co. Antrim, UK Aim: The study was designed to explore the knowledge of residential and daycare staff working with persons with intellectual disabilities (ID) with regards to the health promotion needs of this population. Method: A postal questionnaire was developed and distributed to 600 staff (response rate of 35.5%; N = 248). An exploratory and confirmatory factor analysis was conducted on the questionnaire and subsequently amended. The questionnaire was then readministered to the 248 staff. Results: Results indicated a dearth of knowledge amongst staff regarding this population’s physical health needs and understanding of health surveillance. Tensions were highlighted regarding the right to choose versus duty of care debate between the person with ID, family carers and staff. Whose role and responsibility it is to promote the health of this population was highlighted. Education and training around the main health issues, risk factors, health screening and health promotion needs were also highlighted. Conclusion: The tool could be used by service providers and in future research to assess staff’s knowledge of health and health promotion needs thus enabling future interventions to be relevant and make a real difference to the lives of adults with ID.

Healthy living according to adults with intellectual disabilities: a thematic analysis of focus groups – ‘First, you need to know what is healthy for you!’ N.M.J. Kuijken ([email protected]), J. Naaldenberg, M.W. Nijhuis-van der Sanden & H.M.J. van SchrojensteinLantman de Valk Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands Aim: Interventions that promote a healthy lifestyle could prevent many health problems experienced by adults with intellectual disabilities (ID). Previous research in this area mainly included the views of stakeholders other than people with ID themselves. Health promotion strategies for people with ID should, however, also take the viewpoints of the target group itself into account. Method: Five semi-structured focus groups were conducted among 21 adults with mild to moderate ID in the Netherlands. Discussion was guided by pictures of (un)healthy activities. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. Results: Participants expressed that healthy living entails more than healthy food and exercising; having a certain degree of independence and a good social network are perceived as important as well. Moreover, what is considered ‘healthy’ in general, is not necessarily healthy for each individual. Barriers to a healthy lifestyle include physical disabilities and a lack of skills and motivation. Conclusion: This inclusive method revealed that adults with mild to moderate ID have their own understanding of what being healthy constitutes and of the rationale for engaging in healthy behavior. Health promotion initiatives should be tailored to the individual knowledge, skills, motivation, needs and social network of people with ID.

Adapted ‘healthmatters program’: promoting healthy lifestyles in individuals with an intellectual disability L. O’Leary ([email protected]), L. Taggart & W. Cousins School of Nursing, University of Ulster, Newtownabbey, Co. Antrim, UK Aim: Our goal was to test the efficacy of an adapted health promotion intervention entitled ‘HealthMatters Program’ (originally developed by Marks et al., 2013) on health related outcomes for people with intellectual disabilities (ID), and on staffs’ knowledge and attitudes in supporting this population to adopt a healthy lifestyle. This study also explored facilitators and barriers to engagement in health promotion activities. Method: A multiphase mixed methods approach was used. A pre-post single design tested the outcomes of the programme on 28 staff (attitudes and nutrition knowledge) and 46 individuals with ID (weight, nutrition knowledge, health behaviour, nutrition self-efficacy and social supports). These outcomes were assessed pre-intervention, and 3 and 6 months post-intervention. Following this the barriers and facilitators to implementing the programme were explored within focus groups. Results: Nutritional knowledge outcomes improved significantly for staff and people with ID. The focus groups found that consistent commitment from staff, managers and individuals with ID was critical to ensuring successful application of knowledge acquired from the programme in order to positively change health knowledge and behaviours. Conclusion: Organisational, staff and service user buy in influenced successful implementation of the adapted ‘HealthMatters Program’ and adherence to healthy lifestyles.



Symposium 1.11 ASD: Screening and Diagnosis Music-based autism diagnostics (MUSAD): a newly developed diagnostic measure for adults with intellectual developmental disabilities suspected of autism T. Bergmann ([email protected]), T. Sappok, M. Ziegler, S. Dames, A. Diefenbacher & I. Dziobek Department of Psychiatry, Evangelisches Krankenhaus K€onigin Elisabeth Herzberge gGmbH, Berlin, Germany Aim: Although autism spectrum disorder (ASD) is a frequent comorbid condition in individuals with intellectual disabilities (ID), diagnostic tools for this group are lacking. The newly developed MUSAD is a structured approach using the nonverbal communicative quality of music to assess autistic symptoms in adults with ID. This study aims to evaluate the MUSAD’s applicability, scale construction, and psychometric properties. Method: Applicability was evaluated in a clinical sample of 91 adults varying from mild to profound ID. Objectivity was investigated by coding of a subsample (n = 12) by two blinded raters, reliability by test repetitions, and validity by correlating the MUSAD raw values with convergent (SCQ, PDD-MRS) and divergent measures (ABC, MOAS). Test structure was analyzed by factor analysis. Results: The MUSAD was accepted by 90/91 participants indicating good feasibility. Objectivity resulted in an ICC (2.1) of 0.73, reliability was at 0.75 (ICC 3.1). Significant positive correlations (r > 0.5) were found with convergent measures in contrast to divergent scales. Factor analysis and item selection led to a tailored final test-model, which was confirmed by fit indices. Conclusion: The MUSAD is a promising observational measure for diagnosing ASD in adults with ID.

The diagnostic behavioral assessment for autism spectrum disorder – revised: a screening instrument for adults with intellectual disability suspected of autism spectrum disorder T. Sappok ([email protected]), I. Gaul, A. Diefenbacher, € lte & M. Heinrich T. Bergmann, I. Dziobek, S. Bo Department of Psychiatry,Evangelisches Krankenhaus, K€onigin Elisabeth Herzberge gGmbH, Berlin, Germany Aim: Given the strong association between intellectual disability (ID) and autism spectrum disorder (ASD), standardized instruments for the assessment of ASD in adults with ID are desirable. The objective was to develop an ASD screener specifically designed for adults with ID and suspected comorbid ASD. Method: This study examined the Diagnostic Behavioral Assessment for ASDRevised (DiBAS-R), a DSM-5/ICD-10 based caregiver-report screening tool that consists of 19 Likert-scaled items. Item-analysis and the factorial, diagnostic, and convergent/discriminant validities of the DiBAS-R were evaluated in a clinical, adult sample with ID (N = 219). Results: Factor analysis yielded two consistent dimensions; i.e., social interaction/communication and stereotypy/rigidity/ sensory abnormalities. The diagnostic validity was adequate, as reflected by an area under the curve of 0.89 and balanced sensitivity and specificity values of 81%. The DiBAS-R total scores were significantly correlated with the Social Communication Questionnaire (r = 0.52), the Scale for Pervasive Developmental Disorders in Mentally Retarded Persons (r = 0.50), and the Autism-Checklist (r = 0.59), while no significant correlation with the Modified Overt Aggression Scale was observed. The interrater reliability was excellent (ICC = 0.88). Conclusion: These findings indicate that the DiBAS-R is a promising and psychometrically sound instrument for ASD screening of adults with ID.

Validity of the social communication questionnaire in adults with intellectual disabilities and suspected autism spectrum disorder T. Sappok ([email protected]), A. Diefenbacher, I. Gaul & € lte S. Bo Department of Psychiatry, Evangelisches Krankenhaus, K€onigin Elisabeth Herzberge gGmbH, Berlin, Germany Aim: Diagnosing autism spectrum disorder (ASD) in adults with intellectual disabilities (ID) is a challenge and appropriate instruments are not yet available. The objective was to investigate the diagnostic validity of the Social Communication Questionnaire (SCQ) in a clinical sample of adults with ID and suspected comorbid ASD. Method: The SCQ was applied in 151 adults with ID and suspicion of ASD referred to a psychiatric hospital between 1/2009 and 12/ 2011. ASD diagnoses were assigned by a multidisciplinary team consensus conference according to the ICD-10 diagnostic research criteria for autism or atypical autism [F84.0/F84.1]. The psychometric properties of the SCQ-current and -lifetime versions were assessed. Results: Sensitivities and specificities for ASD were 98/47% for the SCQ-current and 92/22% for the SCQ-lifetime version. Sensitivities and specificities were increased to 89/66% and 78/48% through adjusting the recommended cut-points. The SCQ-current score correlated with the Scale for Pervasive Developmental Disorders in Mentally Retarded Persons and the Autism Diagnostic Observation Schedule, whereas the SCQlifetime score correlated with the Autism Diagnostic Interview-Revised. Conclusion: Our findings support the use of the SCQ-current version for ASD


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screening in adults with ID, while the SCQ-lifetime version should be used with caution.

Screening for autism spectrum disorder in specialist mental health and forensic settings L. Underwood ([email protected]), J. McCarthy & E. Chaplin Forensic and Neurodevelopmental Science, Institute of Psychiatry at King’s College London, London, UK Aim: We explored methods of screening for autism spectrum disorder (ASD) in two adult populations sampled from specialist settings: a mental health in intellectual disability (ID) service and a prison. Method: In study one, 121 mental health service users with ID were assessed for ASD using the Social Communication Questionnaire (SCQ). In study two, 240 prisoners were assessed for ASD using the 20-item Autism Quotient (AQ-20). In both studies, further assessment was carried out using the Autism Diagnostic Observation Schedule (ADOS). Results: The SCQ resulted in a high number of false negatives: over 40% of participants who screened negative met diagnostic criteria for ASD. The AQ produced a high number of false positives: only 30% of prisoners who screened positive on the AQ met diagnostic criteria for ASD. Further data will be presented on sensitivity, specificity and optimum thresholds. Conclusion: Existing screening tools have been validated to recognise ASD in adults with ID and high-functioning adults in the general population. We found that these tools may need to be adapted for use in more specialist settings. Further research is needed on the best ways of identifying adults with ASD in mental health and forensic services.

1.12 Health and PIMD Usage of the grading system of epileptic control for persons with profound intellectual and multiple disabilities in Maria Wufeng caring home H.-T. Chuang ([email protected]), T.-H. Chiang, C.-T. Tsai & S.-F. Tsai Maria Social Welfare Foundation, Taichuang City, Taiwan Aim: The incidence of epilepsy among person with profound intellectual and multiple disabilities (PIMD) in Maria Wufeng Caring Home is up to 32.7%, over the incidence (1%) among the general population. The Grading System of Epileptic Control (GSEC) is developed to evaluate the outcomes of epileptic control and the appropriate treatment or intervention. Method: The six levels (from G0 to G5) of the grading system, based on the frequency, duration and risk of epileptic attacks, are designed to evaluate the outcomes of epileptic control. The higher score indicates the poorer control of epilepsy. For those with poor control of epilepsy, the adjustment of medications is arranged immediately and followed-up closely. Results: The GSEC has been promoted since 2009. During 5 years, the rate of IEC (Index of Epileptic Control), has decreased from 1.27 to 0.86 in Maria Wufeng Caring Home. Conclusion: The GSEC with IEC is a useful tool to indicate the progress of epileptic control for each individual target and represent the outcome of epileptic control for the whole group of people in Maria Wufeng Caring Home.

Oral care for persons with profound intellectual and multiple disabilities S.-T. Huang ([email protected]) Department of Oral Hygiene, College of Dental Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan Aim: Oral health impacts the teeth, the general health and life quality of persons with profound intellectual and multiple disabilities (PIMD) and their families. Oral care is an urgent task for persons with PIMD. Method: Oral care of persons with PIMD can be divided into three levels dependingon the selfcleaning ability, facial muscle tone, mastication and swallowing functional ability. The 1st level of oral care includes tooth-brushing and flossing, the 2nd level is the care of the soft tissue of the oral cavity, and the 3rd level care includes the tongue base and facial muscle training. Most persons with PIMD may need 2nd and 3rd level oral care. We instruct their families or caregivers to maintain the 1st and 2nd level oral care daily, and advise them to visit a clinic every 2 months for 3rd level oral care. Results: Approximately 2/3 of PIMD patients can maintain moderate or satisfactory oral hygiene status. The remaining 1/3 failed to maintain proper oral hygiene due to systemic diseases such as dysphagia, regurgitation etc. Conclusion: Persons with PIMD can retain good oral hygiene and health status when their families or caregivers conduct oral care efficiently.

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Bone health in individuals with profound intellectual and multiple disabilities C.-L. Lin ([email protected]) & Y.-F. Su Kaohsiung Medical University Hospital, Kaohsiung, Taiwan Aim: Low bone mass density (BMD) is found to be more common in postmenopausal women and among individuals with profound intellectual and multiple disabilities (PIMD). Maintaining good bone health is important for this population as osteoporotic fractures could potentially occur undetected in individuals with PIMD, leading to a further loss of independence. The aim of this study is to investigate bone health in individuals with PIMD. Method: 180 institutionalized persons with PIMD underwent BMD measurements by ultrasounds of the heel. The characteristics of these cases, including age, gender, the degree and type of PIMD, diagnosis, medication, body weight, and height, were compared with T or Z scores. Results: Persons with PIMD have higher incidence of low BMD when compared with age and sex-matched people without disability. The severity of bone loss is correlated with the severity of disability and decreased levels of physical activity. Conclusion: The result of this study highlights the low BMD in persons with PIMD. Further work is needed to gain a greater understanding of changes in BMD in individuals with PIMD. Early detection of low BMD could lead to the development of more advanced treatment for bone loss in these specific populations.

Delivery of daily medical care for persons with profound intellectual and multiple disabilities: practice in various countries S. Sone ([email protected]) Tokyo Metropolitan Higashiyamato Medical Center for Multiple/Developmental Disabilities, Japan Aim: This study aimed to explore the background of delivery of the medical care to people with profound intellectual and multiple disabilities (PIMD) living with their family. Method: A questionnaire was designed to identify the recipients of 4 types of medical care and the necessity of specialist licences in different countries. It was administered at the 2013 IASSIDD Special Interest Research Group (SIRG)-PIMD roundtable meeting and sent to SIRG-PIMD members in the Asia-Pacific region. Returned questionnaires were received for six European countries plus Australia, Taiwan and Japan. Results: Tube feeding, oral/nasal suction, nebulization/oxygen inhalation were delivered by parents and non-medical professions in all countries except for Estonia. Tracheal suction was delivered by parents in five countries and by non-medical professionals in six countries. A special license was only necessary in Estonia, France, Japan and the Netherlands. Conclusion: Non-medical professionals appear to deliver medical care without special education in many countries. Suggestions for delivering daily medical care to people with PIMD will be discussed further.


Behavior problems and mental disorders in adolescents with autism spectrum diorder, intellectual disability, or typical cognitive development II: collateral effects on parents J. Blacher ([email protected]) & B.L. Baker University of California, Riverside, Los Angeles, USA Aim: We studied stress and psychological symptoms reported by parents of adolescents with and without co-morbid behavior problems and mental health disorders. Method: Data were from 198 youth at age 13; n = 100 typically developing (TD), 40 intellectual disability (ID) and 58 (ASD). Measures were the Diagnostic Interview Schedule for Children (Costello et al., 1985), Family Impact Questionnaire (Donenberg & Baker, 1993), Parenting Daily Hassles (Crnic & Greenberg, 1990), Center for Epidemiological Studies Depression Scale (Radloff, 1977), and Life Orientation Test (Scheier et al., 1994). Results: The three diagnostic groups differed significantly on all measures of mothers’ well-being, with mothers of youth with ASD reporting the most stress and psychological symptoms and the least positive impact. The impact of youth co-morbid mental health disorders on mothers’ parenting stress and on psychological symptoms was moderated by mother’s dispositional optimism. Conclusion: Professionals assisting families need to be cognizant of the collateral effects on mothers’ well being that ensue when their adolescent has a mental health disorder. Services need to encompass both the needs of the parents as well as the more obvious behavioral challenges of the youth. This is a particularly salient problem in families whose youth have ASD.

Longitudinal predictors of maternal depression in mothers of children with and without intellectual disabilities S. Zeedyk ([email protected]), J. Blacher & B.L. Baker University of California, Riverside, Los Angeles, USA Aim: This study addressed the change in maternal depression over eight time points. Predictors were maternal age, child disability status, child behavior problems, and financial impact of the child. Method: Data were collected annually from child age 3 to 9 years and at 13 years. Participants included children with ID (N = 98) or typical cognitive development (TD, N = 141) and their families. The Center for Epidemiological Studies Depression Scale (Radloff, 1977), Child Behavior Checklist (Achenbach, 1991, 2000), and Family Impact Questionnaire (Donenberg & Baker, 1993) were completed. Results: The final linear model indicated that child behavior problems had a significant effect on initial levels of maternal depression, predicting above and beyond the child’s age, mother’s age, and child’s disability status. Once behavior problems were entered into the model, child disability status was no longer a significant predictor. Financial impact of the child, after controlling for income, significantly contributed to mothers’ initial depression, but not to change in depression over time. Conclusion: Both child behavior problems and perceived financial impact of the child predicted initial levels of depression, above and beyond disability status. Only maternal age was found to explain the change in depression over time, suggesting that depression trajectories may be better explained by mothers’ dispositional traits, rather than child characteristics.

Symposium 1.13 Behaviour Problems, Mental Disorders and the Family Behavior problems and mental disorders in adolescents with autism spectrum diorder, intellectual disability, or typical cognitive development I: group comparisons B. Baker ([email protected]) & J. Blacher University of California, Los Angeles, USA Aim: We addressed the extent of behavior problems and mental disorders in adolescents with typical cognitive development (TD), intellectual disability (ID), or autism spectrum disorder (ASD). Method: Data were from 198 youth at age 13; TD = 100, ID = 40, ASD = 58. Measures were the Wechsler Intelligence Scale for Children (Wechsler, 2003), Vineland Scales of Adaptive Behavior (Sparrow et al., 2005), Child Behavior Checklist (Achenbach & Rescorla, 2001), and Diagnostic Interview Schedule for Children (Costello et al., 1985). Results: Behaviour problems and mental disorders in youth without ASD (e.g. TD and ID) were highly related to IQ level; youth with IQs below 85 (ID group) had symptom scores as much as three times as high as youth with TD. Within the ASD group, however, behaviour problems and mental disorders was unrelated to IQ. Moreover, youth with ASD had the highest symptom scores and percentages in the clinical range on every measure; on the CBCL total, 65% of youth with ASD (versus 16% of TD youth) scored in the clinical range. Conclusion: Professionals assisting adolescents with ASD and their families need to be aware that, in addition to the symptoms of ASD, clinically significant behavior problems and/or mental disorders are highly likely to be present.

Discussant: international perspectives P. Walsh ([email protected]) University College, Dublin, Ireland The discussant is an expert in the health and well-being of persons with intellectual disabilities and their mothers. She will provide commentary on the papers presented and also present a context for understanding issues of health (physical and mental health) and intellectual disabilities world-wide.

1.14 Primary Healthcare and Health Screening Preventive health screening for people with intellectual disabilities: a systematic review E.J. Bakker-van Gijssel ([email protected]), J. Naaldenberg & H.M.J. van Schrojenstein-Lantman de Valk Department of Primary and Community Health Care, Health Care for People with Intellectual Disabilities, Radboud University Medical Centre, Nijmegen, The Netherlands Aim: People with intellectual disabilities (ID) have a higher prevalence of health problems compared to the general public, however their health needs are often unrecognized and unmet. Research in Anglo-Saxon countries demonstrated that preventive health screening for people with ID, in primary health care settings, is profitable. However models of health care organization are different in various countries. Insight in implementation context of preventive health screening instruments is therefore very important. The objective of this study therefore is to generate an overview of preventive health screening instruments and their implementation context. Method: A systematic review of literature between 2000 and 2013 was conducted covering keywords related to ‘intellectual



disabilities’ and ‘health screening’. The search was performed in Pubmed, CINAHL, PsycINFO and EMBASE. Results: The presentation will give an overview of the preventive health screenings instruments for people with ID found in literature, the patient groups they are applied to, the included health items, their implementation context and their executors. Conclusion: The result will provide insight in currently existing preventive health screening instruments and their implementation context. This information is helpful in developing such an instrument in a new context.

An outpatient clinic for adults with Down syndrome: results and recommendations A. Coppus ([email protected]) Radboud University Medical Centre, Nijmegen, The Netherlands Aim: The life expectancy of persons with Down syndrome has increased from 9 years in the early 1900s to the mid-sixties today. Decreased institutionalisation and the availability of effective treatments for many health issues more common in Down syndrome are largely responsible for the improvement in survival. The creation of community programs and living settings for adults with Down syndrome are resulting in a shift in medical care from specialists working in residential settings to the General Practitioner. The multidisciplinary outpatient clinic, Down 18 + , in the ‘Elkerliek’hospital serves as a referral centre for adults with Down syndrome living in the community. Methods: Longitudinal data were collected from a Health Watch program provided during 5 years of followup in more than 100 adults with Down syndrome. Results: Findings include the most common physical and mental health problems identified. We will discuss the need of specialised health care checks for adults with Down syndrome. Conclusion: Clinical symptoms and signs of early aging are frequently missed because of limited knowledge of this special population. The results of this clinic, opened in 2007, show that routine, systematic screening for common physial and menthal health problems is recommended, in all adults with Down syndrome.

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patients’ attributions and emotions; patient communication and health literacy skills; GP communication skills; continuity of carers and GP; time constraints; and data sharing resources. Conclusion: Findings in this study help us to design tailor-made instruments to improve health information exchange and quality of GP care for people with ID. To gain more insight into other determinants of health information exchange, we will expand our study with an exploration of the carer and GP perspectives.

Towards tailored primary health care for persons with intellectual disabilities H.M.J. van Schrojenstein Lantman-de Valk (henny. [email protected]) & J. Naaldenberg Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands Aim: Current changes in care philosophy and policy changes lead to an increase of people with intellectual disabilities (ID) living within the community. General practices are not yet prepared for sometimes complicated health problems. This issue inspired us to conduct several studies into providing evidence to improve this care. We also started a primary health clinic where ID physicians meet persons with ID and advise on characteristic health problems. Method: Files of the first 50 patients were searched on reasons for encounter, advice given and cooperation with other professionals. Representatives were asked about patient satisfaciton via a postal questionnaire. Results: Most reasons for encounter were coordination of characteristic problems, deterioration and medication problems.Top three recommendations regarded medication, approach, and referrals. Cooperation with psychologists and paramedical personnel was sought in 20 and 18% of cases respectively. 90% of patients were (very) satisfied. Conclusion: These results may indicate that our clinic fills a gap within primary health care. Strengths and weaknesses of our results as well as further research questions will be discussed.

Organisation of out-of-hours care for people with intellectual disabilities: a survey of service providers M. Heutmekers ([email protected]), J. Naaldenberg, W.J.J. Assendelft & H.M.J. van Schrojenstein Lantman-de Valk Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands

Symposium 1.15 Health and People with IDD

Aims: This study explores the organization of and current arrangements for out-of-hours care for people with intellectual disabilities (ID) in Dutch service providers. Out-of-hours care is the care provided outside the regular practice schedule of the physicians. In contrast to the extensive evidence on effectiveness, safety, accessibility and organisation of the Dutch out-of-hours care for the general population, only little is known about out-of-hours care for people with ID. Available evidence suggests that its organization and quality are not satisfactory. Evidence to guide policy decisions and research on out-of-hours ID care, is urgently needed. Method: All service providers for people with ID in the Netherlands were invited to participate in a telephone survey. The survey covered themes such as: process of care, competence of involved professionals, and perceived problems in triage, accessibility and registration. Interviews were scheduled between October 2013 and March 2014. Data are analyzed using descriptive statistics and thematic qualitative analysis. Results: Results will provide an overview of the characteristics of current arrangements, and an overview of perceived problems, success factors and barriers. Conclusions: Information on the out-of-hours primary ID care in the Netherlands, is necessary in striving to improve care and focus further research.

Aim: Our aim was to investigate the association between exposure to a range of upstream (e.g., income poverty) and downstream (e.g., parenting difficulties) social determinants of poorer health and the risk of exposure to significant harm and behavioural problems for children with and without developmental delay. Method: We conducted a secondary analysis of cross-sectional confidentialised needs analysis data collected in three area of England with a combined population of 1.25 million people. Information was collected on 46 023 households, 2236 (4.9%) of which contained a child in the target age range with developmental delay. Results: Children with developmental delay were at significantly increased risk of poorer health outcomes and of being exposed to a wide range of social determinants of poor health. Controlling for between group differences in exposure to social determinants reduced the risk of developmental delay being associated with poorer outcomes by 45% for behaviour problems and 89% for risk of significant harm. For children with developmental delay, parenting problems appear to play an important role in partially mediating the effects of poverty. Conclusion: The findings of the present study point to the potential effectiveness of family-focused early intervention to prevent the emergence and escalation of poorer health outcomes in children with developmental delay.

Health information exchange in general practice care for people with intellectual disabilities: a qualitative study on the patient perspective M. Mastebroek ([email protected]), J. Naaldenberg, A.L.M. Lagro-Janssen & H.M.J. van Schrojenstein Lantman de Valk Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands Aim: Insufficient and inadequate exchange of health information leads to problems in recognizing and treating health problems in people with intellectual disabilities (ID). Our overall aim is to provide insight into the determinants of health information exchange between general practitioners (GPs), individuals with ID, and their carers. In this part of our study, the patient perspective is being explored. Method: We conducted audio-taped semi-structured interviews (n = 21) and two focus groups (n = 16) with people with mild to moderate ID. Verbatim transcripts were coded and analysed using Framework Analysis. Results: Factors impairing or facilitating health information exchange appeared before, during and after medical consultations. Major themes were: telephone accessibility of GP-practices and professional carers; availability and communication skills of professional carers; preparation of the GP consultation;


Exposure of children with developmental delay to social determinants of poor health: cross-sectional study E. Emerson ([email protected]) & P. Brigham Division of Health Research, Centre for Disability Research, Lancaster University, Lancaster, UK

Obesity and health behaviours of British adults with self-reported intellectual impairments J. Robertson ([email protected]), E. Emerson, S. Baines & C. Hatton Division of Health Research, Centre for Disability Research, Lancaster University, Lancaster, UK Aim: The aim of the study was to describe rates of obesity and pertinent health behaviours in British adults with and without intellectual disability (ID). Method: We conducted a secondary analysis of de-identified cross-sectional data from the first two waves of Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. Interviews were undertaken with 50 994 individuals aged 16 and over in Wave 1 and 54 585 in Wave 2. Of these, 520 participants age 16–49 (1.8% of the unweighted agerestricted sample) were identified at either Wave 1 or Wave 2 as having selfreported intellectual impairments. Results: British adults with self-reported intellectual impairments have higher rates of obesity, inactivity, tobacco and alcohol use and poorer nutrition than their non-disabled peers. Adjusting risk estimates for between group differences in age, gender and exposure to material hardship indicated that a significant proportion of their increased risk of obesity,

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tobacco use and poorer nutrition may be attributable to their poorer living conditions (rather than their self-reported intellectual impairments per se). Conclusion: British adults with self-reported intellectual impairments have higher rates of obesity, inactivity, tobacco and alcohol use and poorer nutrition than their non-disabled peers.

Conclusions: This guideline should help to increase the reliability of the information provided by people with ID; giving them a voice not only in diagnostic, but also in scientific research. Together with the Guideline on Effective Interventions in Mild ID, we aim for better diagnostic assessment and treatment for people with mild ID.

Perceptions of neighbourhood quality, social and civic participation and the self-rated health of British adults with intellectual disability C. Hatton ([email protected]), E. Emerson, J. Robertson & S. Baines Public Health England Learning Disabilities Observatory, Lancaster University, UK

IQ, the Flynn effect, mental illness and intellectual disability: a cognitive reserve hypothesis T. Florio ([email protected]) & J.N. Trollor Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, NSW, Australia

Aim: Evidence from general population research suggests that people with more extensive and closer social networks and people who report feeling connected to their local community tend to have better health. Few studies have examined these issues with people with intellectual disabilities (ID). Method: From the first wave of the UK survey Understanding Society (n = 50 976), we identified 279 participants age 16–49 (1.1%) as having ID for secondary analysis. Results: British adults with ID have less favourable perceptions of important neighbourhood characteristics and lower levels of social/civic participation than their non-disabled peers. Favourable perceptions of important neighbourhood characteristics and higher levels of social/civic participation are associated with more positive self-rated health for adults with and without ID. For adults with ID, employment and social contact with friends are particularly important. Between-group differences in perceptions of important neighbourhood characteristics and levels of social/civic participation may partially account for the elevated risk of poorer self-rated health among adults with ID. Conclusion: The health inequalities experienced by people with ID may be partially attributable to their less favorable perceptions of important neighbourhood characteristics and lower levels of social and civic participation.

Gaps in the evidence base on the health or healthcare of people with intellectual disabilities: a review of systematic reviews J. Robertson ([email protected]), C. Hatton, E. Emerson & S. Baines Division of Health Research, Centre for Disability Research, Lancaster University, Lancaster, UK Aim: The goal of the study was to identify strengths and gaps in the research evidence base regarding the health or healthcare of people with intellectual disabilities (ID) in order to help inform the direction of future research on health inequalities. Method: Electronic literature searches and email requests identified systematic reviews published in English from 2008 to 2013 of the health or healthcare of people with ID. Reviews were categorised using ICD-10 chapter headings and information extracted regarding methods, number of studies reviewed and findings. Results: Ninety-four reviews were identified. Fifty-two related to ICD-10 Chapter V: Mental or behavioural disorders, 28 to Chapter XXI: Factors influencing health status and contact with services, and 14 related to other chapters or encompassed multiple chapters. Nine reviews were ‘empty’. No reviews were found for many ICD-10 chapter headings. Conclusion: Systematic reviews are heavily weighted towards mental health, with little coverage of several areas important to the health and mortality of people with ID.

Symposium 1.16 Cognitive Skills, Decision-Making and ID A guideline to increase the reliability of self-reports of people with mild intellectual disabilities J. Douma ([email protected]), X. Moonen, L. Noordhof & A. Ponsioen Landelijk Kenniscentrum LVB (Dutch Knowledge Centre on Mild Intellectual Disabilities), Utrecht, The Netherlands Aim: We aim to develop a guideline with recommendations for the development, adaptation and administration of (diagnostic) instruments for people with mild intellectual disabilities (ID). Even though individuals with mild ID are capable of reporting about their own functioning and feelings, only few (diagnostic) instruments have been developed specifically for them. Consequently, instruments for the general population are being used. However, to enhance the reliability of their self-reports, and not only for diagnostic purposes, one needs to consider specific characteristics of mild ID. Knowledge about these characteristics and how to adapt to them is therefore important. Method: An extensive literature study was done, followed by in-depth interviews with experts in the field on mild ID and diagnostic assessment. Results: The Guideline Diagnostic Research Mild ID was constructed. It contains information about specific characteristics of midl ID relevant to providing self-reports and recommendations on how to adapt to these characteristic when developing or administering questionnaires or tests.

Aim: The Flynn Effect, shows people have consistently gained 3 IQ points per decade for the last century. Recent data shows that rates of mental disorders are inversely correlated with IQ. We propose a Cognitive Reserve Hypothesis: the rates of mental disorders among people with an intellectual disability (ID) along with the population have been reducing for some time. Method: The Cognitive Reserve Hypothesis predicts that we should observe significant and progressive reductions in rates of mental illness indicators over several decades of the past 100 years. We examined historical data from Australia (Suicide rates and mental illness hospitalisation) and the US (rates of alcohol consumption). Results: There have been large, significant and progressive reductions in the rates of mental illness hospitalisation (without any increase in jail population rates), suicides rates (without any increase in homicide rates) and alcohol consumption over the past 100 years. Conclusion: The results indicate the mental health of the population has improved over the past 100 years. This has co-occurred alongside population-wide increases in cognitive ability. More research on this Cognitive Reserve Hypothesis and if there are effects that can be better harnessed by clinicians and society, particularly in relation to ID and mental health, is recommended.

Healthcare inclusion and everyday choices: an experiential perspective from adults with ID and their carers M. Terras ([email protected]), D. Jarrett & M. Ferguson University of the West of Scotland, UK Aim: People with ID have fewer choice opportunities than the general population. Existing research provides some insight into the influences on healthcare decision making by, with and for adults with ID. However, less is known about the views and decision making of clients who opt out of health care provision. Method: A qualitative method was used to explore the choicemaking experiences of individuals with ID who were regular or irregular attenders at physiotherapy appointments. Interviews, supported with visual cues, were carried out with people with ID (N = 4) and/or their carer (N = 13). Physiotherapy staff participated in a focus group (N = 4). Results: Individuals with ID participated in a variety of everyday decisions, but were minimally involved with health-related decisions. Carer perceptions of clients’ abilities influenced the choices that were offered. Conclusion: Although the right to make choices is being acknowledged, the involvement of people with ID in healthcare decisions is a source of difficulty for those supporting them. Carers and healthcare staff would benefit from a shared understanding of the complexities of decision making (and their influence on this), and support to capitalise on service users’ everyday decision making opportunities.

Computerised training as a primer for assessing cognitive mediation skills in people with ID L. Vereenooghe ([email protected]), S. Reynolds, L. Gega & P.E. Langdon Norwich Medical School, University of East Anglia, Norwich, UK Aim: The aim of this study was to evaluate a computerised assessment of cognitive behavioural therapy skills for people with intellectual disabilities (ID). Additionally, the effects of training in linking situations to feelings and the subsequent impact upon cognitive mediation skills were evaluated and compared to a control group. Method: Sixty-five participants were randomised to a training condition or attention-control condition; researchers were blind to allocation. Computerised assessment of cognitive mediation skills consisted of scenarios based on situation, inferential belief, and emotion components. Results: Linking beliefs to situation feeling pairs was found to be more difficult than linking emotions to situation belief pairs. Likewise, performance in the training group was higher when selecting an emotional consequence to a situation than when selecting the activating event for an emotion. Regression analysis showed that pre-test performance, verbal ability and intervention all predicted post-test performance for cognitive mediation involving situation belief pairs, whereas no significant predictors were found for cognitive mediation involving situation emotion pairs. Conclusion: People with ID show a degree of understanding of cognitive mediation and training can further improve these skills. Computerised assessments and training are feasible and potentially increase cognitive behavioural thereapy accessibility for people with ID.



Sympsoium 1.17 Challenging Behaviour, Mental Health Needs and QOL An evaluation study of specialized care for people with intellectual disabilities and severe mental health problems Y. Dijkxhoorn ([email protected]), G.H.A. Wulms & A.C. Louisse Department of Child and Adolescent Psychopathology, Leiden University, The Netherlands Aim: To enhance the quality of life (QOL) for people with intellectual disabilities (ID), we need to improve the quality of care and treatment and figure out which factors contribute to an enhancement of the QOL. Ipse/ DeBruggen, a large provider of care for people with ID has taken up the challenge to start an evaluation of their services for people with a mild to severe ID and the most intensive need for support, namely round the clock integrated care and treatment on all dimensions of the AAIDD-model. Method: Through a review of the literature and a pilot we have developed a research model that gathers information from the level of the clients (their profiles, need for support and individual goals), and the support provided (client-carer interactions, (para) medical treatment, activities, participation) and which monitors outcome, using the QOL domains. Results: We will present the profile of the client groups, the instruments to gather information about the (para)medical, pedagogical and psychological interventions and the need for support. Conclusion: We have succeeded in implementing a model to start a 5 year study to evaluate the QOL and quality of care of the group people with the most intensive support needs.

Reduced incident reports as a measure of improved quality of care A.C. Louisse ([email protected]), G.H.A. Wulms & Y.M. Dijkxhoorn Ipse/De Bruggen, The Netherlands Aim: One of the most robust indicators of an improved quality of life (QOL) for clients is a reduction of freedom-limiting acts, such as the use of restraints, psychotropic medication for behaviour problems and isolation. This improved QOL is considered a measure for quality of care. In the Netherlands, the government has launched a program to minimize those measures. Every professional has to consider the use of these measures and explore other methods to deal with behaviour problems. This has led to question whether the reduction of these methods is a valid outcome measure for the effectiveness of treatment in specialized care units for people with intellectual disabilities and severe challenging behaviours. Method: Every action a professional undertakes that restricts the freedom of a client has to be reported. These reports were entered into a database which we analyzed. Results: We will present an overview of the kind of interventions used that restrict the freedom of clients and report of the use of these interventions over time and the results of the implementation of alternatives. Conclusion: The determination of risk factors and a stepped program combined with alternative treatment measures, diminishes the amount of interventions that restrict the freedom of client.

Preventing challenging behaviour of adults with complex needs in supported accommodation P. McGill ([email protected]), L. Vanono, W. Clover, E. Smyth, K. Henderson, V. Cooper, L. Hopkins & G. Murphy Tizard Center, University of Kent, UK Aim: The current project investigates a theoretically driven approach to the prevention of challenging behaviour through improving the quality of social care arrangements, especially in areas known to be associated with behaviour that challenges. The research asks whether intervention of this kind prevents and reduces the severity of challenging behaviour, enhances quality of life, enhances staff working life, enhances quality of life for co-tenants and produces broader benefits for the health and social care economy. Method: A cluster randomised controlled trial design, with twenty four services randomly allocated to experimental or control arm was conducted. Results: Preliminary data collected from the experimental services throughout intervention indicates substantive and cumulative improvement in the quality of social care across all services. Data on impact of the intervention on challenging behaviour are being collected from January to March 2014 and will be presented. Conclusion: This model of intervention is associated with significant increases in quality of social care. Data currently being gathered will establish whether such improvements are also accompanied by reductions in challenging behaviour and changes in other dependent variables.

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A framework to evaluate treatment of clients with intellectual disabilities and severe mental health problems G. Wulms ([email protected]), Y.M. Dijkxhoorn & A.C. Louisse Ipse/De Bruggen, The Netherlands Aim: Ipse/DeBruggen, a large care provider in the Netherlands, aims to treat people with intellectual disabilities (ID) and a very intensive support need because of challenging behaviour and mental health problems within an environment that is as normal as possible. Improving the quality of life is the main goal and caregivers provide a climate in which growth is possible. Although it is clear that this kind of integrated support is necessary, few intervention studies have been undertaken to figure out what aspects of these intervention are the most effective. Method: Through interviews, observation and file analysis we have put together a framework that can be used to gather information about the methods and interventions used by caretakers to support clients with ID and severe challenging behaviour. In other words, to objectify tacit knowledge and interventions (especially the pedgogical climate and mediation therapy) used in everyday life. Results: In the presentation we will show an overview of methods used and present the range of methods used. Conclusion: Thorough descriptions and consensus about which interventions are used in every day care of people with ID and severe challenging behaviours are crucial before we can start evaluating the effectivity of integrated care.

Symposium 1.18 The End of Life and People with IDD The methodology of the last days of life IDRS study S. Todd ([email protected]), R. Worth, J. Shearn, J. Bernal, P. Madden, K. Hunt, K. Lowe, E. Jones, P. Jarvis, S. Read, T. Kroll & R. Forrester-Jones UDID, University of South Wales, UK Aim: This paper seeks to present an outline of the rationale behind the Last Days of Life IDRS study- a national UK study of the last days of life of people with intellectual disabilities (ID) lving in resdential services. ID services will be the the last place of life for many people with ID and whislt much is known about the quality of life of their residents little is known about the nature of care and events of death and dying. This paper is concerned with the methodolgy employed. Method: There are three phases to the study. Phase 1 involves the recruitment of the study participations (ID service providers in the UK). Phase II involes identifying deaths and the facts of death. Phase III invoves obtaining data on the individual, place of residence and quality of care at the end of life. Results: Services supporting over 10 000 adults with ID have been recruited. The process and outcomes of recruitment will be discussed. Conclusion: As the study as in progress, the conclsuions of this presentation will deal with the implications for studying death and dying.

First glimpses of the last days of life IDRS study S. Todd ([email protected]), J. Shearn, R. Worth, J. Bernal, K.Hunt, P. Madden, E. Jones, K. Lowe, M.McCarron, P. Jarvis, S. Read, T.Kroll & R. Forrester Jones UDID, University of South Wales, UK Aim: This paper presents data from the first wave of data collection in the study of the last days of life of people with intellectual disability (ID) living in services in the UK. Although death and dying are becoming key concerns for academics and providers, little is known about the events of death and dying at the population level. Method: Data were obtained from 40 service providers in the UK supporting over 10 000 people with ID in residential services. Data on deaths within that population are being obtained from 2 phases of data to be run in 3x6 month cycles. Data from this first cycle will be presented. This data will look at the profile of deaths for this population. Results: We anticipate providing an over view of the deaths of around 80 people with ID. Data are currently being returned and analysed. The presentation will consider age and gender specific death rates for different types of provision and outline the nature and events of deaths from the first cycle of data collection. Conclusion: The implications of this round of data analysis for future research and service development will be discussed.

The last months of life of people with intellectual disabilities living in a New Zealand service S. Todd ([email protected]), S. Brandford, G. Bennett & J. Bernal UDID, University of South Wales, UK Aim: This paper examines how death and dying are responded to in services in New Zealand. We sought to contribute to the literature on the relationship between death, dying and intellectual disability (ID). Method: Data were obtained on deaths over a 2 year period of all clients in a New Zealand ID service. 98 deaths were reported but this paper focuses on those living in a group home setting (N = 64). Data were obtained on the characteristics of


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decedents and events of the last months of life. Results: Although death was more likely for older residents, the majority of deaths were of younger people who had lived for many years in their place of care. This setting was not the most likely place of death for decedents. Few decedents had been aware that they were dying. Cause of death had an important impact on how the events of dying and death unfolded. Conclusion: ID services have to confront the death and dying of their residents. This is difficult given the nature of services and the varying profiles deaths and dying. Currently people with ID face a risk of institutionalised dying. Implications for future research and service development will be examined.

End of life decisions in adults with intellectual disability in residential care facilities in Switzerland M.T. Wicki ([email protected]), S. Meier & J. Adler University of Applied Sciences of Special Needs Education, Zurich, Switzerland Aim: The aim of the study was to establish the prevalence and nature of endof-life decisions in people with intellectual disabilities (ID) who died in the last 5 years in residential homes for people with ID in Switzerland. Method: With a cross-sectional online-survey with 437 residential homes for adults with ID in Switzerland, the percentage of people with ID, living in residential homes, who died in the last 5 years, was established as was the prevalence and nature of end-of-life decisions, when people died in residential homes. Results: The response rate was 58%. The average age at death in the study population was 58.2 years. People with ID experience a higher percentage of end-of-life decisions earlier in life than people without ID. Decisions on abandoning artificial nutrition and respiration occur significantly more often for people with ID than for other people with disabilities. 34% of the people with ID, living in residential homes in Switzerland, have a do not resuscitate order. Conclusion: Advanced planning, for example via the issue of a greater number of do-not-resuscitate orders and by improving policies and training in end-of-life care, is needed to improve the degree of involvement in the end-of-life decisions of people with ID.

Symposium 2.1 Emotions, Mental Health, Medication and IDD Screening for depressive disorders in adolescents with intellectual disability K.Gray ([email protected]), S. Milsome & G. Melvin Department of Psychiatry, Southern Clinical School, Early in Life Mental Health Service, Monash Medical Centre, Monash University Centre for Developmental Psychiatry & Psychology, Melbourne, Australia Aim: Behaviour and emotional problems occur at a high rate in children and adolescents with intellectual disabilities (ID), but mental health disorders are frequently undiagnosed and few individuals access mental health services. Screening instruments such as checklists are a useful way to quickly assess the likely presence of a mental health disorder. The current study aimed to develop a screening tool for depressive disorders in adolescents with ID. Method: The Developmental Behaviour Checklist was completed by parents and teachers in a community sample of 77 young people aged 12–19 years with ID. Depressive symptoms were assessed using a semi-structured parent interview and diagnoses were made with expert consensus reviews. In addition to the interview items, criteria from the DSM-IV-TR and DM-ID diagnostic systems were used to assess and describe depressive disorder symptomatology. Results: Depressive disorders were identified in 14% of the sample. Analyses identified a subset of 7 Developmental Behaviour Checklist items with a good sensitivity (82%) and specificity (83%) in detecting a depressive disorder. Conclusion: The identified subset of items is proposed as a good method for screening for depressive disorders in young people with ID and has the potential to facilitate earlier access to appropriate mental health services.

Reducing the prescription of psychotropics to people with intellectual disabilities J.H.M. van Loon ([email protected]) & P. de Doelder Arduin Foundation, Middelburg, The Netherlands Aim: The prescription of antipsychotic medication exceeds the expected prevalence of psychoses in persons with intellectual disabilities (ID). This may be explained by off-label prescription for behavioral problems. This study aimed at reducing use of psychotropics among clients of a Dutch service provider. The results of a pilot study among 13 clients will be presented. Method: Data were collected on physical measures, quality of life (QOL), and daily observations via web based questionnaires. The effectiveness of the prescribed medication was considered, based on the diagnostics of the challenging behavior. Individual action plans were developed and implemented. Results: With 10 persons we could stop use of a total of 12 medications. With 4 persons more than one medication was stopped; with 7 people doses were reduced. Overall


improvement in functioning were found, although sometimes improvement of vitality or alertness at first meant increasing challenging behavior. Interviews with the Personal Outcomes Scale demonstrated better scores on several domains of QOL, and a better self-report total score. Qualitative remarks included more alertness, vocabulary, vitality, better sleep and loss of overweight. Conclusion: In general reduction and a more rational use of psychotropics can be achieved. The challenge is finding other solutions to cope with difficult behavior.

The assessment of emotional development in persons with intellectual disabilities: psychometric properties of the scale for emotional development-revised (SED-R) S. Vandevelde ([email protected]), F. Morisse, C. Claes, , A. Verduyn, B. Jonckheere & A. Dosen L. Poppe, L. Riske Department of Special Education, Ghent University, Ghent, Belgium Aim: Emotional development is an important part of the assessment, diagnosis and identification of support needs in persons with intellectual disabilities (ID). The Scale for Emotional Development–Revised (SED-R) (Claes & Verduyn, 2012; based on the original scale for emotional development by Dosen) could be used in this respect. The lack of psychometric data, however, could hinder its further implementation. This presentation aims at summarizing data with regard to reliability and validity of the SED-R, based on two studies. Method: The first study investigates the internal consistency and the inter-rater-reliability of the SED-R in a sample of 67 persons with ID. The second study focuses on the correlations between the SED-R and the Vineland Adaptive Behavior Scales in a sample of 24 persons with ID. Results: The internal consistency is high (Cronbach’s a = 0.95). The total score of the SED-R shows good inter-rater reliability, and 10 out of 13 domains show good to reasonable inter-rater reliability scores. Three of 13 domains show only moderate scores. Data on the validity of the SED-R are being analyzed. Conclusion: The SED-R seems to be a reliable scale to assess emotional development. Data with regard to its validity will be discussed.

Symposium 2.2 Mental Health Needs, Challenging Behaviour and Services The clinical, forensic, and treatment outcome factors of people with autism spectrum disorder treated in a forensic intellectual disability setting V. Chester ([email protected]), F. Esan, V. Chester, I.J. Gunaratna, S. Hoare & R.T. Alexander Partnerships in Care Learning Disability Services, Diss, Norfolk, UK Aim: The aim of the study was to describe the characteristics of those with autistism spectrum disorder (ASD) treated within a forensic intellectual disability hospital and to compare them with those without ASD. Method: An outcome audit of a cohort of 138 patients treated over a 6 year period was conducted. Results: Of the 138, 42 had an ASD. Personality disorders, depressive disorders and harmful use/dependence on drugs were significantly lower in the ASD group. The ASD group was less likely to be subject to criminal sections or restriction orders. Self-harm was significantly higher in the ASD group. There were no differences in the length of stay and direction of care pathway. Conclusion: Although the ASD and non-ASD groups differ on clinical and forensic characteristics, their treatment outcomes appear similar. This suggests that the diagnostic category of ASD alone may be inadequate in predicting the treatment outcome. There is a case to identify distinct typologies within the ASD group.

Using privacy preserving data linkage to observe community mental health services delivered to people with an intellectual disability T. Florio ([email protected]), S. Howlett, H. Xu & J. Trollor Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, NSW Australia Aim: Our aim was to develop a mechanism for making continuous observations of Community Mental Health Services delivery to people with intellectual disabilities (ID) at the population level, which uses existing datasets. Method: Within a geographic catchment (population 2.64 million) and for a 6-year period (2005–2011), privacy preserving data-linkage was employed to link the dataset which records people with ID (DS-MDS) with the dataset which records details of Community Mental Health Services (CHAMB). Results: 89 262 persons had a record in the CHAMB dataset. Of these 1459 (1.6%) also had a record in the DS-MDS dataset. Those who were on the DS-MDS were more likely to be receiving treatment for chronic psychotic and personality disorders, less likely to be receiving treatment for major depression and adjustment disorder, had 1.5 times more face-to-face contacts and each contact on average was 2.2 times as long. Conclusion: Privacy-preserving datalinkage can be applied to existing datasets to instantiate a mechanism to observe



the delivery of health services to people with ID. Though not demonstrated here, this mechanism can also be used to look at changes in utilisation and patterns over time, retrospectively and prospectively. Furthermore this mechanism is relatively cheap and easy to implement.

A survey of in-patient psychiatric care for people with intellectual and developmental disabilities in England G. Glover ([email protected]), I. Brown & A. Holland Public Health England, UK Aim: The paper describes findings from an England-wide census to identify people with intellectual and developmental disabilities, in psychiatric in-patient care. This was sponsored by the health ministry as part of the response to revelations in a television documentary of appalling abuse of patients whose care was being funded by the National Health Service (NHS) in an independent for-profit hospital. Method: The census was managed by the English health statistics organisation. All relevant in-patient units were required by the hospital licensing body to report on each relevant patient in hospital on 30th September 2013. Findings were compared with a similar census undertaken 3 years earlier. Results: The census identified 3250 patients, a fall of 35% since the previous census. Numbers of older patients and women fell more. Numbers in NHS beds and beds without security fell much more than those in independent sector hospitals or secure beds. Further details of patterns of diagnoses, reasons for hospitalisation, review processes, and treatment will be presented. Conclusion: Numbers of in-patients have fallen since the documentary. However it is not clear that the pattern of reduction to date represents the change needed.

Changing the way that staff interact with people who have challenging behaviour: a review J. Webb ([email protected]), J. Clegg & A. Pilnick School of Sociology and Social Policy, University of Nottingham, Nottingham, UK Aim: Between 5% and 15% of people with intellectual disabilities (ID) demonstrate challenging behaviours. Staff reactions can be counter-productive causing a cycle of reinforcement. Challenging behaviour interventions often focus on altering specific behaviours but may not focus on interactional aspects of care. Whilst the immediate efficacy of behavioural interventions has been demonstrated, they can have negligible long term effects. Staff reflection on interaction can improve relational aspects of care and have positive effects on challenging behaviour. This paper explores how Discovery Awareness, an interactional method, may be used to engender staff reflexivity in order to stimulate interaction and lower challenging behaviour. Method: This paper examines common approaches to challenging behaviour and uses Discovery Awareness as a point of contrast. Discovery Awareness is a method created by Jacques Heijkoop utilizing video analysis to stimulate new ways of reflecting upon interaction. Results: The strength of reflexive approaches like Discovery Awareness is that they may provoke lasting change by supporting staff to make their own discoveries about the patient and could be a valuable approach to challenging behaviour. Conclusion: Approaches to challenging behaviour which promise solutions may be more attractive to service providers and policy makers.

Symposium 2.3 Rett Syndrome – 1 Lost in transition: quality of life and transitional process to adult health services in patients with Rett syndrome M. Freilinger ([email protected]), L. Schoberth, R. Jagsch & A. Novak Department of Paediatric and Adolescent Medicine, Medical University Vienna, Vienna, Austria Aim: Rett syndrome is a rare neurological disorder mainly affecting girls. Since the first description by Andreas Rett in 1966 in Vienna beside the genetic etiology, clinical knowledge and expertise improved dramatically and increased the life span of these women with severe disabilities. Therefore transitional processes from paediatric to adult medical and social health care services are noticeably required. The study examined the health-related quality of life and surveyed the conditions of transition of patients with Rett syndrome. Another objective was the verification of the Caregiver Priorities and Child Health Index of Life with Disbilities Questionnaire (CPCHILD) as an appropriate instrument for assessing the quality of life of this patient group. Method: Specific clinical aspects of Rett syndrome, health-related quality of life and transition facts and wishes were assessed by parents of 43 patients aged from early childhood to adulthood. Results: Influencing factors on quality of life and key aspects of the transition process will be presented and discussed. Conclusion: Our results could help to discuss, implement or improve transition processes also in other patient groups with intellectual disabilities.


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En route to disentangle early behavioral abnormalities as early markers for maldevelopment: learning from Rett syndrome P.B. Marschik ([email protected]), K.D. Bartl-Pokorny, F. Pokorny & C. Einspieler Research Unit iDN – Interdisciplinary Developmental Neuroscience, Institute of Physiology, Medical University of Graz, Austria Aim: Comprehensive studies on early motor, speech-language and communicative skills and their developmental trajectories of girls with Rett syndrome and its variants are rare. The focus of this lecture is to highlight peculiarities in these domains with respect to different genotype-phenotype relations and the severity of outcome. Method: The unique possibility to ‘look back’ by applying retrospective video analysis to study early development allowed for new insights into the genetic interference with functional brain development. Results: Behavioral phenotypes of Rett syndrome and developmental trajectories of motor, cognitive and socio-communicative forms and functions will be discussed in terms of their pre-regression course as well as their relations across developmental domains. Conclusion: As behaviorally oriented neuroscientists our research focuses on the delineation and characterization of early developmental phenomena within and across domains.We aim to point to the clinical relevance of markedly atypical early development and its potential contribution to early detection.

Rett syndrome and older age E.E.J. Smeets ([email protected]), P. Thiry, N.S.J. Halbach, D.A. van Waardenburg & L.M.G. Curfs Rett Expertise Centre – Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands Aim: We sought to identify the clinical and behavioural characteristics of the Rett syndrome in adults to improve future management and follow-up of women affected. Method: We report on a longitudinal study in females (16– 46 years of age). We revisited some of the older survivors that were not enrolled in this study. Results: The prevalence of different features will be presented: the use of care facilities, general health, weight status, self-expression, air swallowing, bloating, nightly screaming, abnormal agitation and anxiety. We were especially impressed by the behavioural aspects of nightly unrest and anxiety/agitation. Therefore we revisited 4 older cases that were known to us for many years. Data on developmental level evaluation and clinical and behavioural aspects of these 4 women will be presented with special emphasis on their behavioural history. Conclusion: Older womwn with Rett syndrome represent a group of more mildly affected females who have lived through a more protracted course of their disorder with less clinical severity and comorbidity that allowed them to survive into older age despite their complex limitations. They are readily recognizable as having Rett syndreom and in good general health. Remarkable is their periodic disruptive behaviour that resembles the hypersympathetic state at toddler age.

Growth faltering and osteoporosis in Rett syndrome D.A. van Waardenburg ([email protected]), E.E.J. Smeets, N.S.J. Halbach & L.M.G. Curfs Rett Expertise Centre – Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands Aim: Rett syndromeis characterized by growth deficits, altered body composition and osteoporosis. Gastrointestinal problems and insufficient nutritional intake are important causes but other factors (genetic, metabolic, etc) may be involved. More insight in the underlying pathophysiological processes is necessary to define and evaluate rational therapeutical interventions. Method: We obtained sequential anthropometric data for 35 girls with Rett syndrome. Bone mineral density was measured using bone densitometry (DXA) in combinations with biochemical indices of bone metabolism. A selective metabolic program was carried out. Results were added to our database and relations between parameters were evaluated. Results: Low Z-scores for length, body mass index and head circumference were present in a high percentage of girls. Lean body mass was decreased while fat mass was conserved. Protein and energy intakes were in line with recommended daily allowances. Bone mineral density Z-scores were decreased in all patients. Low Vit D3 concentrations were found in 30% of girls. Correlations between nutritional, anthropometric, bone density, genetic, metabolic and biochemical indices will be presented. Conclusion: Growth faltering and osteoporosis occur frequently in girls with Rett syndrome. Their causes are multifactorial and cannot be ascribed to nutritional deficits alone. Other factors are also involved.

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Symposium 2.4 Mortality and IDD Possibilities for monitoring mortality data in different parts of the UK G. Glover ([email protected]) Public Health England, UK Aim: Studies based on case registers or in-depth studies of defined areas have provided clear evidence that mortality rates are substantially greater in people with intellectual disability (ID) than others. The English Confidential Inquiry provided evidence of a substantial excess of mortality potentially amenable to prompt high quality medical care. However identifying the extent of this excess with precision, establishing how it varies around the country and monitoring trends over time requires comprehensive national approaches to data collection which in England have proved extremely difficult. This paper sets out to describe the possible approaches to this in the UK setting. Method: The author’s work with the English Health and Social Care Information Centre and with the Scottish Governments statistical work programme ‘eSAY’ provide insights. Results: Technical approaches to providing continuing monitoring approaches are described. It is uncertain when substantive findings from these will become available. Conclusion: The absence of an effective way to document variations in excess mortality for people with ID between places and over time is a serious impediment to effective campaigning to improve healthcare for this group.

Is a paper-based review of deaths sufficient? P. Heslop ([email protected]), A. Marriott & M. Hoghton University of Bristol, Norah Fry Research Centre, UK Aim: In England, the Confidential Inquiry into premature deaths of people with intellectual disabilities (ID) chose not to adopt a desk-top approach to reviewing deaths. This paper describes the added benefit of conducting interviews of people involved in supporting a person who has died. Method: The Critical Inquiry investigated the deaths of 247 people with ID in England. Case investigators and nurses interviewed paid and informal supports of the person who had died. Results: A median of seven different interviews with professionals, family members and friends were conducted per death. In the majority of cases, all of those involved with supporting an individual who had died only had a partial view of the circumstances leading to their death. Interviews with family members usually provided considerably more depth, and often a different perspective to that provided by professionals. Professionals were often reluctant to commit any judgements, impressions or views on paper, but were more willing to discuss their views with an investigator. Conclusion: Our experience of conducting the Critical Inquiry leads us to suggest that a paper-based collection of core data that is not supplemented by interview(s) is of variable value.

Coding on cause of death certificates: issues for people with intellectual disability from the US and England E. Lauer ([email protected]) & P. Heslop Eunice Kennedy Shriver Center, University of Massachusetts Medical School, Charlestown, MA, USA Aim: Vital statistics are an important source of population-based health surveillance. In both the United States and the United Kingdom, causes of death on death certificates are completed by physicians. We seek to examine countrylevel conventions in cause of death coding on death certificates in order to understand how any differences may affect the interpretation of comparisons in vital statistics between the two countries. Method: We compared information from datasets of instances of mortality of people with intellectual disabilities (ID) across the two countries containing both death certificate information and additional case-review information. Additionally, we examined the literature for general population comparisons in coding conventions between the two countries to understand which coding conventions may be specific to the population of people with ID. Results: Important differences exist in the recording of causes of death between the countries and also between the general population and people with ID. Conclusion: Observed differences may reflect factors such as underlying differences in diagnostic conventions between the countries and differences in the investigation of causes of mortality, such as the lower rate of coroner involvement for people with ID. Comparisons between populations should take these types of differences into account when interpreting findings.

Examining mortality among adults with intellectual disabilities in Ontario, Canada H. Ouellette-Kuntz ([email protected]) & R. Balogh Department of Public Health Sciences, Queen’s University, Kingston, ON, Canada Aim: Having documented significant disparities in access to health care among adults with intellectual disabilities (ID) in Ontario, the impact on health


outcomes for this population warrants investigation. One focus of our work has been on developing methods to study mortality in adults with ID at the population level. Method: We reviewed methods and results from two unpublished studies of mortality among persons with ID in Ontario, as well as available administrative data and record linkage possibilities. Results: Over a 6-year period (1995–2001) there were 879 in-hospital deaths/10 000 admissions (age and gender adjusted). Over a 7-year period (2004–2011) mortality in a cohort of 3388 individuals with ID in one region revealed excess mortality across all age groups and both sexes. Increased age, Down syndrome and epilepsy were among the risk factors for mortality identified in the ID cohort. We are currently studying the feasibility of using a linked dataset of over 66000 persons with ID living in Ontario to measure mortality-related indicators. Conclusion: There are various options for measuring mortality of persons with ID in Canada. We review the benefits and limitations of the options.

Symposium 2.5 Health and PIMD Safety and danger awareness in people with profound intellectual and multiple disabilities: exploratory study based on caregivers’ points of view G. Petitpierre ([email protected]) & J. Gyger Departement de pedagogie specialisee, Universite de Fribourg, Fribourg, Switzerland Aim: Can signs and expressions of awareness of danger be traced in individuals with profound intellectual and multiple disabilities (PIMD)? We are so unaccustomed to considering individuals with multiple disabilities as capable of having any skills in this domain that this question has remained unanswered prior to the present exploratory study. Method: Members of three educational teams were asked open-ended questions on the basis of a preset interview format. The conclusions and opinions of each team were reported to the research professional after a collective discussion centring on a randomly selected person with PIMD. Results: Professionals report evidence of ‘acute awareness of danger’ in some people and ‘abilities to anticipate it’ in others. They find that individuals may be aware of various types of danger and mention the influence of mediation in the identification and management of uncomfortable or risk situations. Conclusion: Without challenging the principle that protection should be considered as a key priority in socio-educational support, the evidence demonstrates that a degree of independence, although somewhat slight, does exist in individuals with PIMD.

Re-labelling behaviour: the effects of psycho-education on identifying challenging behaviour in people with profound intellectual and multiple disabilities P. Poppes ([email protected]), A.A.J. van der Putten & C. Vlaskamp ’s Heeren Loo/University of Groningen, Groningen, The Netherlands Aim: This study sought to determine extent to which the way of labelling the prevalence, frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD), and staff beliefs about the causes of the challenging behaviour could change by providing psychoeducation. Method: 240 dyads of persons with PIMD and staff members from 10 organisations for people with PIMD in the Netherlands were involved. A stepped wedge design was used in which participating organisations (three clusters) cross over from control to intervention at different points in time. The order of ‘switch-over’ is determined randomly for each group of organisations. The Behaviour Problem Inventory was used to determine the prevalence, frequency and severity of the challenging behaviour. The Challenging Behaviour Attributions Scale was used to measure staff attributions towards challenging behaviour. These instruments were filled out four times during 4 months. The intervention consisted of a course in which a number of general topics were discussed: types, causes, consequences, prevalence, frequency and severity of challenging behaviour in people with PIMD. A relational view on challenging behaviour and its consequences for people with PIMD was discussed. Results: Results are not yet available. Conclusion: Implications of the findings will be discussed.

Unsafe soundscapes as a cause of challenging behavior in people with profound intellectual and visual disabilities K. van den Bosch ([email protected]), T. Andringa & C. Vlaskamp Department of Special Needs Education and Child Care, University of Groningen, Groningen, The Netherlands Aim: Research indicates that people with profound intellectual disabilities (ID) more often display challenging behavior than people with mild ID. One possible cause of challenging behaviour is the reduced ability to communicate, leading to dissatisfaction expressed through challenging behaviour. Recently, it was hypothesized that soundscapes lacking in audible safety could lead to



challenging behaviour, possibly because unsafe soundscapes obscure optimal communication. This paper aims to investigate the relation between challenging behaviour and the quality of soundscapes. Method: An observational study was conducted with 37 participants with profound intellectual and visual disabilities. The frequency and gravity of challenging behaviour was assessed with a Dutch translation of The Behavior Problems Inventory (Rojahn, 2001). The quality of the soundscapes was assessed in terms of pleasantness and eventfulness, based on the concept of core affect (Russell, 2003). Results: Results are not yet available. Conclusion: Previous results showed a strong relation between the quality of soundscapes and behavior of people with profound ID. We expect to find a similar trend between soundscapes and challenging behaviour, which would yield new insights in how to optimize the living environments of people with profound visual and ID to reduce challenging behaviour.

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control group received digital text based on the same theoretical background (attachment theory: senistivity, responsivity and promt adequate reactions). The single Category-Implicit Association Test (SC-IAT) was used as pre- and posttest for both conditions. Results: Based on results from our pilot RCT study (N = 23: pretest M = 0.10, SD = 0.94, posttest M = 0.18, SD = 0.69) we expect that the scores for prejudice, the SC-IAT score, will be lower after playing the serious game and that there will be a lower SC-IAT score for the experimental group compared to the control group. Conclusion: With this study we examine whether a serious game like ‘www.theworldofempa.org’ can contribute to reduce prejudice towards persons with disabilities.

Symposium 2.7 Health and Families of People with IDD Symposium 2.6 Mindfulness, Mentalising and Prejudice in IDD Case studies on mentalizing and non-mentalizing communication during daily care for children and adults with a visual impairment, intellectual disability and/or with problematic attachment F. Dekker ([email protected]) & P.S. Sterkenburg Bartimeus, Doorn, The Netherlands Aim: ‘Learning how to mentalize’ is a Dutch book focusing on useful and practical information concerning mentalizing and ‘non’-mentalizing communication between parents, caregivers and teachers and a person with an intellectual and visual disability. The aim of this study was to add case examples to the guideline for mentalizing caregiving. These case studies were collected from practical experience in the care for children and adults with a visual impairment and intellectual disability. Method: Over a period of 12 months, 20 case examples were collected to explain mentalizing (8 cases) and ‘non’-mentalizing communication (12 cases). Results: Mentalization-based caregiving can reduce the level of stress, can regulate emotions and can help the caregiver to stay in contact with the child/adult. Furthermore, it can enhance the level of sensitivity of the caregiver and their coping with challenging behaviour. The case examples describing mentalizing and non-mentalizing caregiving may add to caregiver knowledge and understanding concerning mentalization based caregiving. Conclusion: The case examples can be used for general information. They can also, when added to the guidelines give parents, caregivers and teachers more understanding on mentalization-based caregiving.

The effects of mindfulness for people with visual impairment and moderate intellectual disability and their caregivers H. Hokke ([email protected]), P. Lievense & P.S. Sterkenburg Bartimeus, Doorn, The Netherlands Aim: This pilot study focuses on the effect of mindfulness for persons with visual impairment and moderate intellectual disability (ID) and of a mindfulness training for caregivers. Method: Two clients and eight of their caregivers participated in case studies. The clients received a mindfulness-based therapy by an experienced therapist. The staff received mindfulness training based on the Mindfulness Based Stress Reduction (Kabat-Zinn, 1979). To assess well-being and the effect on challenging behavior the Clinical Outcomes in Routine Evaluation- Outcome Measure (CORE-OM) was used. Self-efficacy of caregivers was measured using the Dutch General Self-Efficacy Scale. To assess effects on the interaction between clients and caregivers a questionnaire was designed. The social validity was examined using a social validity scale, based on Seys (1987). Results: The results show an improvement in well-being and a decrease in challenging behavior for both clients (v2 = 12.25, P = 0.007; v2 = 14.02, P = 0.003). The self-efficacy of the caregivers increased (z = 2.226, P twosided = 0.026) during the training as well as their focus of attention on their clients. Both clients and caregivers indicated that they found mindfulness-based treatment and training valuable. Conclusion: Mindfulness appears to have positive effects on the persons with visual and ID and on their caregivers.

The effect of a recently developed serious game on prejudice towards persons with disabilities € ns P.S. Sterkenburg ([email protected]) & F. Jurie VU University Amsterdam & Bartimeus, Amsterdam, The Netherlands Aim: Prejudice towards persons with disabilities is a common phenomenon. Prejudice can be decreased by ‘putting yourself in the other person’s shoes’. A serious game ‘www.theworldofempa.org’ was developed as an aid, not only to support professionals and parents in increasing their sensitivity and responsively to persons with disabilities, but also as an intervention to reduce prejudice towards persons with disabilities. Method: A RCT involving 54 adults was conducted. The experimental group played the serious game and the


The impact of educational involvement on psychological adjustment among mothers of children with autism spectrum disorder: a longitudinal study P.R. Benson ([email protected]) University of Massachusetts Boston, Boston, MA, USA Aim: Despite its importance in autism education and treatment, very little is known about the effects of parent involvement on parent psychological adjustment, especially over time. Method: Data were collected in 2006, 2008, and 2010 from 110 mothers of children with ASD residing in the northeastern U.S. Study variables included maternal educational involvement (school- and home-based involvement, school-home communication), maternal distress, parenting efficacy, child behavior, parenting stress, SES, and life events stress. Data were analyzed using a cohort sequential design, allowing for the multilevel modeling of change over 7 years when children in the study were age 7–14. Results: In terms of overall change, maternal distress decreased significantly over time, while relative stability was observed in parenting efficacy. Analyses also indicated that increases in each involvement dimension was related to reduced distress and increased parening efficacy over time, net of other family and child factors included in the models. Further, home involvement was found to moderate the longitudinal effects of child behavior on parenting efficacy. Conclusion: Findings suggest that educational involvement has beneifical effects on maternal adjustment over time. More research is needed, especially studies which examine other parent/family outcomes and include both mothers and fathers as respondents.

Physical and mental health of families co-residing with an adult with an intellectual disability J. Grey ([email protected]), V. Totsika & R. Hastings Bangor University, UK Aim: The research aimed to find out more about the physical and mental health of family carers living with an adult with an intellectual disability (ID) in the UK. The study also aimed to explore associations between carers’ well-being and the quality of life of their co-residing relative. Method: A quantitative method was adopted using on-line and postal questionnaires to explore well-being and support and resources available to families. To date, 116 caregivers have provided data. The Kessler 6 and EQ-5D were used to assess carers’ distress and health related quality of life (HQoL). A proxy version EQ-5D was used to collect data on carers’ perceptions of the HQoL of their relative. Differences in families’ coping strategies and positive gains from providing care were measured to explore their potential role as mediators to stress. Results: Carer well-being will be compared to available population norms. Results from regression analyses identifying significant associates of caregiver distress and HQoL will be presented. Finally, we will explore the association between caregiver HQoL and HQoL of co-residing adults with IDs. Conclusion: Findings will be discussed in relation to implications for the well-being of families who continue to co-reside with a relative with an ID into adulthood.

The impact of challenging behaviour on parental and child wellbeing E. Karakatsani ([email protected]), D. Adams, C. Oliver & N. Jackson University of Birmingham, UK Aim: A body of research has reported on the quality of life (QOL) of children with intellectual disabilities (ID) and the impact of challenging behaviour on parental wellbeing. However, these three strands of research have yet to be combined. In this study we examined the association between challenging behaviour, children’s QOL, carer wellbeing and their interrelationship. Method: 119 carers of children under 16 years old with either Angelman, Smith-Magenis, Prader-Willi, Cri Du Chat, Cornelia de Lange, Sotos, Lowe or Phelan McDermid syndrome, or 1p36, 8p23, or 9q34 deletion syndrome completed the Hospital Anxiety and Depression Scale, to assess parental distress, and the Kiddy Kindl, a measure of child QOL alongside measures of child characteristics. Results: Impulsivity and health problems were associated with challenging behaviour. In addition, impulsivity, rather than challenging

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behaviour, was a significant predictor of parental emotional distress. Both parental emotional distress and impulsivity were independently and strongly associated with compromised child QOL. Conclusion: The results indicate that correlates of challenging behaviour might influence parental distress and each of these variables is potential determinants of child QOL.

What can health models tell us about parental perceptions of challenging behaviour? J. Waite ([email protected]), C. Oliver, J. Moss, K. Eden & L. Wilde School of Psychology, University of Birmingham,Centre for Neurodevelopmental Disorders, Edgbaston, Birmingham, UK Aim: Challenging behaviour in intellectual disability is associated with parental anxiety and depression. The Self-Regulatory Model of Illness Behaviour is often applied to patients’ perceptions of health difficulties; however, this model may be applicable to parental perceptions about challenging behaviour. In this study, the model was applied to challenging behaviour and parental well-being. Method: Sixty-five parents of adults with challenging behaviour completed the Illness Perception Questionnaire (IPQ), adapted for challenging behaviour. A subscale was developed to explore beliefs about causes of challenging behaviour. In addition, locus of control, attributions about behaviour and psychological distress were assessed with questionnaires. Results: The adapted IPQ was robust. Inter-correlations support the Self Regulatory Model for challenging behaviour. Situational factors were most frequently endorsed as causing challenging behaviour. Few endorsed operant reinforcement. Psychological distress was associated to a belief in child control over parent measured on the locus of control scale. Conclusions: The Self-Regulatory model is promising for research into parental perceptions of challenging behaviour, however, locus of control appears to be more strongly associated with wellbeing. Clinicians should consider whether learning theory fits families’ understanding of challenging behaviour. The self-regulatory model has been applied to adherence to medical interventions and could be applied to challenging behaviour interventions.

Symposium 2.8 Rett Syndrome – 2 A systematic review of the Rett syndrome behavioural phenotype R. Ciangalione ([email protected]), M. Kerr, D. Felce & R. Hastings Welsh Centre for Learning Disabilities, Cardiff University, Cardiff, UK Aim: Rett syndrome is a rare genetic condition usually associated with a mutation in MECP2 and characterized by developmental regression, gait apraxia, hand stereotypies and breathing abnormalities. The aim of the study was to conduct a systematic review of the literature since 1983 to summarise understanding of the behavioural profile of the syndrome. Method: 3 databases and 7 journals were searched using defined search and inclusion/exclusion criteria. 47 studies were included. Results: Studies were classified in four groups: 4 analysed behavioural characteristics of the phenotype comprehensively, 14 investigated a single behaviour or cluster or behaviours, 18 had control groups, and 11 explored phenotype-genotype association. Findings of each group will be described. Conclusion: Hand stereotypies, breathing abnormalities and sleep disturbances are typically seen in this population but other behavioural manifestations are by no means characteristic.

Self-injury in Rett syndrome D. Felce ([email protected]), R. Cianfaglione, M. Kerr & R. Hastings Welsh Centre for Learning Disabilities, Cardiff University, Cardiff, UK Aim: Rett syndrome is a rare genetic condition usually associated with a mutation in MECP2. Self-injurious behaviour has been found in 48–73% of survey samples. The aim was to explore the occurrence of self-injurious behaviour in a recent UK sample. Method: 91 females, aged 4–47 years were included. 88% lived with family. 76% had classic Rett syndrome, 21% atypical Rett syndrome,and 4% MECP2 related disorder. 78% were known to be MECP2 positive. Comparison was made to a control group with other genetic conditions (n = 66), matched on gender, age and self-help skills. Measurement included the Rett Syndrome Severity Score, Rett Syndrome Behavioural Questionnaire, Activity Questionnaire and Challenging Behaviour Questionnaire. A subsample (n = 11) was directly observed. Results: Self-injurious behaviour was reported in 27.5%. Those with self-injurious behaviour differed in clinical severity, overactivity and impulsivity. Self-injurious behaviour was more common among the control group (45.0%) and observed in 6 of the subsample (54.5%). Selfinjurious behaviour occurred less frequently for 5 participants when they received adult attention and sequential analysis suggested a possible attention seeking motivation for 3. Conclusion: Self-injurious behaviour is not part of the


Rett syndrome behavioural phenotype but arises from factors similar to those found in investigations of self-injurious behaviour more generally.

The psychological well-being and adjustment of families with a daughter with Rett syndrome R. Hastings ([email protected]), R. Cianfaglione, M. Kerr & D. Felce Centre for Educational Development Appraisal and Research, University of Warwick, Coventry, UK Aim: Parents of children with a lifelong disability experience greater stress, anxiety and depression than other parents, with the child’s age and type and severity of disability affecting family well-being. Studies on families with children with Rett Syndrome are rare. The aim was to explore the impact that Rett syndrome characteristics have on parents. Method: 80 families were included at T1 with 40 followed up 16 months later (T2). Measurement included the Rett Syndrome Severity Score, Rett Syndrome Behavioural Questionnaire, Questionnaire on Resources and Stress–Short Form, Hospital Anxiety and Depression Scale, Positive Gains Scale, Positive Affect Scale and a novel questionnaire to capture parental perception of change in behavioural and clinical presentation. Results: At T1 and T2 family problems were related to the severity of their daughter’s behavioural rather than clinical presentation. Parents reported little change over time, although stress significantly increased. Stress at T2 was predicted by stress at T1. Stress, anxiety and depression were linked to a perception of deterioration and positive experiences to a perception of improvement. Conclusion: Severity of behavioural presentation and perceived deterioration were associated with worse parental well-being.

Ageing in Rett syndrome M. Kerr ([email protected]), R. Cinafaglione, D. Felce & R. Hastings Welsh Centre for Learning Disabilities, Cardiff University, Cardiff, UK Aim: Rett syndrome is a rare genetic condition usually associated with a mutation in MECP2 and characterized by developmental regression and subsequent severe physical and intellectual disability. After regression, the child tends to stabilize. The aim was to investigate the impact of ageing in Rett syndrome using data from a recent UK sample. Method: 91 females were studied. 76% had classic Rett syndrome, 21% atypical Rett syndrome, and 4% MECP2 related disorder. 78% were known to be MECP2 positive. Mean age of regression was 18.9 months. Measurement included the Rett Syndrome Severity Score, Health Questionnaire, Vineland Adaptive Behavior Scale, Rett Syndrome Behavioural Questionnaire, Activity Questionnaire, Repetitive Behaviour Questionnaire and Mood, Interest and Pleasure Questionnaire. 50 were followed up after 16 months. Results: At T1, their age ranged from 4 to 47 years (mean = 20.5 years). Severity of clinical and behavioural phenotype and health did not differ with age. Daily living and motor skills increased with age. Age groups differed in overactivity, impulsivity, mood and interest but not repetitive behaviour. At T2, skills and behaviour were similar. Other indicators had deteriorated. Conclusion: The impression of Rett syndrome as changing little with age was confirmed. Some effects of ageing were detected.

Symposium 2.9 Epilepsy and Fetal Alcohol Spectrum Disorder Exploring the medical and social needs of people with intellectual disability who have epilepsy M. Kerr ([email protected]) Cardiff University, UK Aim: The study aimed to qualitatively represent the concerns of those who support individuals with intellectual disability (ID) and epilepsy. Method: An international online survey was distributed to ID and epilepsy support organisations. Respondents, who classified themselves as health professionals, support workers or family members, were asked about their experiences supporting this population. Specifically, respondents were asked about diagnosis and medical treatment, service delivery, education and employment, and social, romantic and family life. Results: 133 individuals from 13 countries responded. The complexity of epilepsy presentation among this population required considerable expertise in diagnosis and medical treatment, however, such expertise was rarely available. Poor communication and a dismissive attitude towards side effects resulted in ineffective clinical consultations. Specialist epilepsy and ID services were strongly recommended, most especially, epilepsy nurse specialists. Educational activities and employment opportunities were significantly limited by stigma, seizure frequency and regulations regarding administration of medication. The combined impact of these conditions on social relationships was considerable. Conclusion: This survey provides an insight into the pervasive impact of epilepsy for those with ID and their family members. Strategies for ameliorating some these difficulties will be outlined.



Does an intellectual disability epilepsy service improve outcomes for patients with intellectual disability and epilepsy? A 9 year study of sudden unexpected death in epilepsy in the UK R. Shankar ([email protected]), D. Cox, B. McLean, J. Hanna, C. Jory, M. Tripp & M. Walker Cornwall Partnership NHS Foundation Trust, UK

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Symposium 2.10 Mental Health and Mental Well-Being Development of a self-report mental health questionnaire (WellSEQ) for adolescents with intellectual and developmental disabilities € m ([email protected]), J. Asberg P. Bostro & M. Broberg University of Gothenburg, Sweden

Aim: Cornwall UK runs a specialist intellectual disability (ID) epilepsy community service for adults with ID that delivers reasonable adjustments and person-centered care to this population. We measured if our outcomes on sudden unexpected death in epilepsy (SUDEP) are better than local and national averages. Method: Data of all epilepsy deaths in Cornwall between 2004 -2012 using the Cornwall Coroner’s database was reviewed systemically. We identified patients with and without ID. Results: There were 93 epilepsy deaths of which 48 were SUDEPs. Of the SUDEP deaths, 3 had a clinical diagnosis of ID. In another 2 cases it was not evident if they had an ID or not. Mean and 95% confidence intervals were 6.8 7.44% calculated using a binomial calculation, making no prior assumptions about the population distribution. None of the 5 were known to the ID epilepsy service. Conclusion: Cornwall’s specialist ID epilepsy service is a rarity in the UK. A recent study using the Leicestershire ID Register revealed 26 people with ID of the total deaths of 83 SUDEP. This contrasts greatly with Cornwall where only 6.25% of SUDEP deaths had ID compared to 23.4% in Leicestershire. It is possible that having an ID dedicated epilepsy service saves lives.

Aim: Currently in Sweden, school-aged children and adolescents with intellectual and developmental disability (IDD) are rarely included in mental health studies. The aim of the present study was to develop a questionnaire to enable self-reported assessment of well-being in adolescents with IDD. Method: Questions about well-being, peer relations, school environment and family relations were presented to a reference group of teachers and pupils in special education. Decisions about presentation format (visual and auditory) and wording of questions and response scales were made in close cooperation with the reference group. Results: The development process resulted in the WellSEQ (Well-being in Special Education Questionnaire) consisting of 43 questions on subjective well-being, peer relations and bullying, school environment and family relations. Questions were presented one at a time via the WellSEQ app on Ipads with audio-visual support (text read by a voice and with photographs). Most adolescents with IDD aged 12–16 years were able to complete the questionnaire independently. Conclusion: The WellSEQ appears promising as an assessment tool; we demonstrate how adjustments of wording and of presentation format and the use of audio-visual support may enable the inclusion of young persons with IDD in health surveys.

Children at risk of prenatal alcohol damage perform below average compared to their non prenatal alcohol exposed peers on a neurodevelopmental test battery S. Roozen ([email protected]), A. Toornstra, G.J. Kok & L.M.G. Curfs Governor Kremers Centre, Maastricht University, Maastricht, The Netherlands

Self-reported mental well-being in adolescents with intellectual and developmental disabilities: an initial psychometric evaluation of the WellSEQ € m & M. Broberg J. Asberg Johnels ([email protected]), P. Bostro Department of Psychology, University of Gothenburg, Sweden

Aim: Children in a rural area in South West Ukraine who are at risk for prenatal alcohol damage were assessed with a neurodevelopmental test battery. Method: 262 children from grade 1 to 9 were enrolled of which 195 completed the Trail Making Task A and B and 194 completed the Naglieri Nonverbal Ability Test (NNAT). A mathematics screening task was completed by 184 participants, and nine tasks selected from the Cambridge Neuropsychological Tests Automated Battery (CANTABâ) by 102 participants. Combined with the 4-digit diagnostic code the children were screened for possible Fetal alcohol syndrome. Results: Compared with age-matched controls, 6% of the participants who,according to the 4-digit diagnostic code, are at risk of prenatal alcohol damage show significant cognitive impairments. Participants with high possibility of prenatal alcohol damage exhibited longer reaction and decision making times suggesting severe problems with attention. Moreover, these participants also show significant impairments in spatial working memory, mathematics, non-verbal reasoning, and planning. Conclusion: The study demonstrates that a brief set of tests can show multiple executive functioning deficits within a group of children with possible prenatal alcohol damage compared to their peers. This provides useful information for early interventions for these affected children.

Fetal alcohol spectrum disorder in a rural area of the South West Ukraine A. Toornstra ([email protected]), S. Roozen, G.J. Kok & L.M.G. Curfs Governor Kremers Centre, Maastricht University, Maastricht, The Netherlands Aim: There is inadequate knowledge about fetal alcohol spectrum disorder (FASD) in a hard to reach rural area in South West Ukraine. Method: Diagnostic guidelines of the FASD 4-digit code with accompanying photographic software, a non-verbal neuro-cognitive assessment (CANTABâ), and qualitative measures (observation lists, self-reports and semi-structured interviews) were used for ascertainment of FASD. Results: Collected data in two schools in this area, grade 1–9 (N = 262) revealed over 21% of the school going children functioning in an intellectual deficient range. Assessing growth and facial dysmorphology characteristics, also according to the 4-digit code, reveals that 6% of the population meets criteria of FASD. Conclusion: Expanded screening and preventive interventions are needed in this rural area.


Aim: In an ongoing research project, we explore a new instrument (WellSEQ) for eliciting self-reports of mental well-being in adolscents with intellectual and developmental disabilities (IDD). The aim of the current paper is to describe preliminary psychometric properties (i.e., reliability and validity) of the WellSEQ. Method: The WellSEQ was administered to adolescents with mild to moderate IDD in Sweden. Data from approximately 40 adolescents with IDD will be presented. A subset of the sample also participated in individual semistructured interviews about well-being. Parents and teachers completed proxy ratings using the same items from the WellSEQ, and also the Strength and Difficulties Questionnaire (Goodman, 1997). Reliability for mental health items from the WellSEQ will be analyzed according to Chronbach’s alpha, test-retest reliability, and analyses of completion rates and answers to reverse-scored items. Validity will be evaluated by relating data from self-reports with information gained in the interviews, and by relating self-reports of mental health with proxy ratings from parents and teachers. Results: Data collection is ongoing. Conclusion: The results of this study will be discussed in terms of their methodological, clinical and public health implications.

The mental health of 11 year old children with and without intellectual and developmental disabilities E. Emerson ([email protected]), C. Hatton, J. Robertson, S. Baines, V. Totsika & R.P. Hastings Centre for Disability Research and Policy, University of Sydney, Lidcombe, NSW, Australia Aim: The aim of the study was to estimate the prevalence of and risk factors for mental health problems in a sample of 11 year old UK children with and without intellectual and/or developmental disabilities. Method: Secondary analysis of Wave 5 data from the UK’s Millennium Cohort Study (total n = 13 287) was conducted. Intellectual disability (ID) was identified from the results of cognitive testing at age 11. Autism spectrum disorder (ASD) was identified from parental (primarily maternal) report. Mental health problems were identified from parental, teacher and child-report using the Strengths and Difficulties Questionnaire. Prevalence rates (with 95% confidence intervals) were calculated. The association between child, family and contextual factors and the risk of mental health problems were estimated separately for children with ID, children with ASD and ‘typically developing’ children. Results: Analyses of Data from Wave 5 released in February 2014 will be presented. Conclusion: Implications of the findings will be discussed.

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Psychometric properties of the strengths and difficulties questionnaire among school-aged children with developmental disorders and intellectual disabilities M. Halvorsen ([email protected]), B. Mathiassen, E. Myrbakk, P.H. Brøndbo, J. Sundby, O. Steinsvik & M. Martinussen Department of Pediatric Rehabilitation, University Hospital of North Norway, Tromsø, Norway Aim: The Strengths and Difficulties Questionnaire is a widely used measure of mental health problems in the general child population. We will present preliminary findings from an on going study of its psychometric properties among children with developmental disorders and intellectual disabilities. Method: A clinical sample of about 100 school aged children with developmental and intellectual disabilities was administered the Strengths and Difficulties Questionnaire and the Aberrant Behavior Checklist. They underwent assessment of intellectual level (Wechsler Intelligence Scale for Children-IV) and adaptive level (Vineland Adaptive Behavior Scales-II). Results: We will report psychometric properties of the SDQ, including factor structure, internal consistency and inter-correlations with other measures such as ABC, WISC-IV and Vineland. Conclusion: The applicability of the Strengths and Difficulties Questionnaire in relation to IQ level will be discussed.

Symposium 2.11 Injuries, Safety and Accidents in IDD Dysphagia-related safety for adults with developmental disabilities: restrictions, risk and complacency B. Hemsley ([email protected]), S. Balandin & J.J. Sheppard The University of Newcastle, Australia Aim: The aims of this study were to gather evidence relating to ‘risk’ and ‘protection’ in relation to swallowing safety for people with developmental disabilities and dysphagia, and to inform safety frameworks and reduce risk of respiratory illness, emergency hospital visits and death associated with choking while eating. Method: In-depth interviews on mealtime experiences were conducted in Australia, India and the United States with 20 adults with developmental disabilities and dysphagia. Results: Interviews reflected coughing or choking not being symptomatic of a disorder but becoming so common as to be ‘usual’ or not alarming; gradual adoption of a very restricted range of foods as a protection but describing this as ‘being able to eat whatever I want’; swallowing skills changed and declined with age, more coughing and choking and increased restrictions, and emotional responses to coughing and choking. Conclusion: Results suggest that the increased frequency of coughing and choking may gradually be accepted as normal, in ways that increase risk-taking during meals or that mask problems with food restrictions. Future research should examine ‘alarm’ and ‘complacency’ in both people with lifelong dysphagia and direct support workers and the potential impacts of this on mealtime safety.

Two-year incidence of injuries amongst adults with intellectual disabilities who live with paid support in Scotland, UK E. Petropoulou ([email protected]), J. Finlayson & D.A. Skelton School of Health and Life Sciences, Glasgow Caledonian University, Glasgow, Lanarkshire, UK Aim: Adults with intellectual disabilities (ID) experience higher rates of injury compared to adults in the wider population. Providers of supported living services to adults with ID in the UK have procedures in place to monitor injuries; this provides opportunity for learning more about the incidence and causes of injuries experienced, to then inform the development of strategies and interventions to prevent or reduce injuries. Method: Three service providers in Scotland implemented a similar, thus more standard electronic injury reporting and recording system. Anonymous 2-year (2012 and 2013) injury data was analyzed retrospectively to report on incidence and causes of injury. Results: Of the interim data available from two of the three service providers, 2775 injury incidents were reported for 80% of 356 adults with ID over the 2-year period. The most common causes of injuries reported were falls. Conclusion: Closeworking with supported living service providers who support adults with ID will help develop more standard, thus reliable injury monitoring procedures within community care/support, as well as opportunities for service providers to develop injury prevention strategies/interventions within their services e.g. support staff training/awareness.


An approach to minimizing restrictive practices resulting in sustainable organizational gains and individual outcomes J.S. Zeiter ([email protected]) & L.A. Marshall Grafton Integrated Health Network, Winchester, VA, USA Aim: The use of physical restraint not only increases organizational risk related to client and staff safety but also related to human resource factors such as staff satisfaction, turnover, productivity, workers compensation costs, and so forth. Grafton will share their experience in shifting their culture from a culture that utilized physical restraint to one of ‘comfort versus control’ resulting in significant gains at the client, staff, and organizational levels. Method: Grafton adopted the belief that the use of physical restraint was a ‘treatment failure’ that occurred when preventative and non-restrictive strategies were not implemented effectively. A seven-gear model was implemented to provide the oversight, training, support, and resources needed to make an organization-wide reduction in physical restraint. The seven gears utilized in Grafton’s model are: Leadership, Communication, Training, Alternative Solutions, Therapeutic Treatment Planning, Debriefing, and Measurement. Results: As a result of this effort, Grafton saw significant improvement in client treatment planning and outcome, reduced employee and client injuries, and significant financial gains. Conclusion: A focused organizational effort to reduce the use of physical restraint creates a win-win situation by not only protecting personal safety but also by yielding significant human resource and fiscal gains.

Symposium 2.12 Mental Health Needs and Challenging Behaviour Systemic therapy for adults with intellectual disability and psychiatric disorders: a pilot study on prevention of physical aggression, restraints and staff burnout in a crossinstitutional setting F. Gaese ([email protected]), E. Nicolai, E. Nagy & J. Schweitzer-Rothers Isar Amper Klinikum M€ unchen Ost, Abteilung Psychiatrische Therapie f€ ur Menschen mit geistiger Behinderung, Haar, Germany Aim: To reduce physical aggression as the most common cause for hospitalisation of persons with intellectual disabilities (ID) in a specialised psychiatric department consisting of a ward and an outpatient unit, from where the doctors are visiting approximately 900 patients who live in an institutional setting around Munich. And to ameliorate staff burnout, risk and satisfaction by collective cross-institutional staff-training in systemic therapy. Method: Using the experience from a systemic education and research project in an general psychiatric environment (SYMPA) we are going to adapt the systemic approach to work with this target group and its environment through a 2-year training and a concomitant pilot study followed by a 2-year sustainability evaluation. Data will be collected every 3 months including events of aggression and restraints and ratings of 5 instruments performed by the staff. Implementation of the training will be analysed in a quantitative and qualitative way. The data will be analysed on a group-level following a process of development and potential change. Results: Training started in February 2014 with 7 institutions. Preworkshops explored and showed adequacy in the work with the target group. Conclusion: Feasibility and design will be discussed.

Secure inpatient services for people with intellectual disability: do we need them? I. Hall ([email protected]), E. Yacoub, M. Beadman, S. Holder, R. Stamps, R. Bates & N. Boast East London NHS Foundation Trust, London, UK Aim: Our goal was to complete a comprehensive needs assessment to enable the development of a robust pathway of care for adults with intellectual disability (ID) requiring secure hospital care, and to assist Commissioners to make informed planning decisions. Method: We identified people with ID originating from London who were in secure hospital care, and collected data about them. We used reference groups to inform the analysis. Results: We identified 249 people in secure services. We were able to include 136 patients in the analysis. Over half were in independent sector (private) provision. Most had a mild ID and a history of violence. They were mostly men, and were place on average 61.5 miles away from their homes, thereby disrupting community links and hampering discharge. 1 in 6 patients could not progress along the care pathway due to a lack of an appropriate ward, facility, resource and/or intervention. Conclusions: Secure care for this population is a major public health issue. Many are placed a long way from home. Local inpatient services should be developed that are closely linked with community services, and there should be sufficiently robust community placements for people to be discharged to.



Complex behaviour service: enhanced model for challenging behaviour A. Hassiotis ([email protected]), S. Inchley-Mort, C. Wahlich & K. Rantell Division of Psychiatry, University College London, UK Aim: The aim of the study was to explore clinical outcomes and care costs associated with a complex behaviour service set up within a community service for adults with intellectual disability (ID). Method: A prospective case control study involved 24 participants treated by the new team who were compared with 22 matched controls who received usual care. The primary outcome was informant-reported reduction in challenging behaviour measured by the Aberrant Behaviour Checklist. Other outcomes included health (and mental health) needs and service use. Results: Irritability and total Aberrant Behaviour Checklist scores significantly improved at 6-month follow-up but dissipated by 12 months. Stereotypy was improved both at 6 and 12 months. No other differences were found. Conclusion: The pilot study suggests that an enhanced dedicated team for challenging behaviour may have beneficial impact in reducing challenging behaviour. Further evaluation is required before a wider adoption by community specialist ID services.

Exclusive treatment or inclusive expertise? P. van Belle-Kusse ([email protected]) Arduin Foundation, Middelburg, The Netherlands Aim: Historically, persons with intellectual disabilities (ID) were moved out of psychiatric hospitals into institutions where the treatment of mental health problems was not possible. Today, several forms of care are available to treat people with ID and mental health problems. Experiences from the Netherlands about the organization of psychiatric services related to the mental health needs of people with ID were examined. Method: Case studies of 20 individuals with ID and severe mental health problems with challenging behaviours were conducted in different institutions in the Netherlands. The cases were followed for 4 years. A second study is being conducted to fade out polypharmacy in 10 individuals. Results: Focusing on quality of life instead of the mental health issues corresponded to a major decrease in behavioural problems and an increase of adaptive behaviour. There is a need to periodically assess psychopharmacological treatments in the context of diagnosis and environmental circumstances. Conclusion: More effective treatment of mental health problems in persons with ID requires a focus on quality of life. The results show that only a few special treatment units are needed in the Netherlands. Treating individuals in their own environment with a multidisciplinary team is more effective and sustainable.

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aims to examine the prevalence and associations of dual sensory impairment among a population of people aged 50 years and older with an intellectual disability (ID) and to compare results with a matched cohort of people from the general population. Method: Data collected in Wave 1 of The Irish Longitudinal Study on Ageing (TILDA) and the Intellectual Disability Supplement to TILDA (IDS-TILDA) were matched on gender, age and geographical location using propensity scoring. Analyses were conducted to ascertain prevalence of dual sensory impairment and associations with measures of physical health. Results: The prevalence of dual sensory impairment among IDS-TILDA participants was 27.8% compared with 23.5% of TILDA participants. Visual impairment was significantly associated with hearing impairment among the ID population (OR 3.3; 95%CI 1.8 –5.9) but not among the general population (OR 1.8; 95%CI 0.9 –3.6) and was also associated with ≥2 Activities of Daily Living, endocrine disease and having a long term chronic condition. Conclusion: Dual sensory impairment prevalence and associations seem to be different among people with ID when compared with the general population.

Utility of a frailty index in older adults with an intellectual disability: preliminary findings from intellectual disability supplement to the Irish longitudinal study on ageing (IDS-TILDA) M. McCarron ([email protected]), R. Carroll, E. McGlinchey, E. Cleary & P. McCallion Trinity College Dublin, Ireland Aim: This study sought to construct a frailty index based on deficit accumulation from a large sample of older adults with an intellectual disability (ID) in Ireland and study the associations between frailty and level of ID. Method: Using data from Wave 1 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (IDS-TILDA), which included 753 persons with an ID aged 40 years and over, we categorised frailty into four main groups: social frailty, physical frailty, cognitive frailty and health frailty. A frailty index was developed based on these groups and a score calculated between 0 and 1 for each individual. Logistic regression was then used to assess the relative effects of age, gender, level of ID and residential status on frailty. Results: Difficulties carrying out day to day tasks, prevalence of health conditions and social exclusion were found to increase with age and therefore were confirmed as key constituents of our frailty index. Levels of ID were also positively associated with frailty. Conclusion: Frailty appears associated with increased risk of adverse health outcomes and care dependence.

Symposium 2.14 Health Services and People with IDD Symposium 2.13 Ageing and IDD Supporting older adults with ID to engage in health screening: lessons learned from the Irish longitudinal study on ageing (IDS-TILDA) E.A. Burke ([email protected]), P. McCallion, J.B. Walsh & M. McCarron Trinity College Dublin, Ireland Aim: To aid clinicians, carers and researchers to more effectively support persons with intellectual disabilities (ID) to engage in health assessments. Method: Following consultation and review by scientific advisory and self-advocacy working groups, health assessment procedures (termed Health Fair) and a Health Fair protocol were developed with associated easy-read material for each of the seven assessments. Ethics approval was granted by services involved and the University. Existing participants (N = 753) from Wave 1 of IDS-TILDA were invited to participate in the Health Fair. In addition to the completed assessments, data were gathered on ease of administration, usefulness of easy read materials, and success in administration. Results: A number of factors were identified which contributed to success: prior information, flexibility in assessment approach or affording time needed by each participant. Challenges identified included unsuitability of some standardised assessments for example grip strength when autism or challenging behaviour, immobility, and physical deformity were present. There were also findings regarding participant personal choice. Conclusion: Health screening is an imperative first step in improving the health of people with ID. However one size does not fit all and assessment delivery adaptations are needed to support optimum health for people with ID.

Dual sensory impairment among older people in Ireland: comparisons between a cohort of people with an intellectual disability and a cohort of the general population aged 50 years and older E. Cleary ([email protected]), M. McCarron & P. McCallion School of Nursing and Midwifery, Trinity College Dublin, Ireland Aim: Dual sensory impairment has been associated with depressive symptoms, an increase in functional limitations and a decrease in quality of life. This paper


Treatment of people with intellectual disability in the NHS: a report from England A. McClimens ([email protected]), J. Brewster & R. Lewis Sheffield Hallam University, UK Aim: The study explores and articulates the experiences of an older man with intellectual disability (ID) who was admitted to hospital for elective surgery so that lessons might be learned to inform future practice, and to inform other families in similar positions. Method: We were invited to contact the family to talk about the episode of hospital care. One in-depth interview was undertaken (1 hr 20 mins) with the family members. A visit to the care home was undertaken and shorter (15 minutes) interviews were conducted with care staff who supported him during his time in hospital. Results: Three main areas of concern could all be summarised under the umbrella heading of communication. These were inadequate pain relief, confusion over staffing roles/responsibilities, and lack of ID awareness from hospital staff. Any or all of these areas might have been alleviated had the ward staff made better use of the Hospital Passport. The Equality Act (2010) and the NHS Constitution (2013) may have been breached. Conclusion: Communication with and between hospital staff and families/carers needs to be improved and the role of the Learning Disability Liaison Nurse should be clarified to prevent any such future occurrences.

The barriers to providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a multi-methods study I. Tuffrey-Wijne ([email protected]) Kingston University and St George’s, University of London, UK Aim: There is clear evidence that a failure to provide reasonably adjusted healthcare services for patients with intellectual disabilities (ID) can lead to poorer outcomes, including premature death. This study aims to identify the barriers to providing reasonably adjusted healthcare services for patients with ID in acute hospitals. Method: A multi-methods study involving interviews, questionnaires and participant observation with 1251 participants (staff, carers and people with ID) in six hospitals in England was conducted. Data were

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collected on implementation and staff understanding of reasonable adjustments. Results: Hospital policies and strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice was often dependent on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Barriers included a lack of effective systems for identifying/ flagging patients with ID, and lack of staff understanding of reasonable adjustments. Conclusion: Ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to patients with intellectual disabilities. Flagging the need for specific reasonable adjustments needed by individual patients, rather than the vulnerable condition itself, may address some of the barriers.

A new model for understanding effective carer involvement for people with intellectual disabilities in acute hospitals I. Tuffrey-Wijne ([email protected]) Kingston University and St George’s, University of London, UK Aim: A range of studies and inquiries in the UK have found that involving carers as expert partners in healthcare provision for people with intellectual disabilities (ID) is crucial in ensuring patient safety. However, persistent evidence remains that effective carer involvement is lacking in hospital settings, This study sought to identify strategies for promoting effective carer involvement for people with ID in acute hospitals. Method: A multi-methods study involving interviews, questionnaires and participant observation with 1251 participants (staff, carers and people with ID) in six hospitals in England was conducted. Data were collected on experiences, barriers and enablers of carer involvement. Results: Despite overwhelming staff support for carer involvement, there were reports across all study sites of inadequate carer involvement leading to compromised patient care. Analysis showed that a major contributory factor was a lack of agreement on carer roles; in particular, the difference between carers as ‘workers’ who helped provide basic care, and carers as ‘experts’ who were involved in care planning and decision making. A model was developed to clarify carer expertise and involvement. Conclusion: If hospital patients with ID have carers, hospital staff should have a protocol for agreeing with carers the extent and nature of their involvement.

‘Invisible patients’: the barriers to identifying people with intellectual disabilities in acute hospitals in England I. Tuffrey-Wijne ([email protected]) Kingston University and St George’s, University of London, UK Aim: Following national inquiries into a failure to provide safe healthcare for people with intellectual disabilities (ID), national guidance stipulates that health care services should identify which of their patients have ID, so that reasonably adjusted healthcare services can be provided for them. The aim of the study was to describe the barriers to identifying people with ID in acute hospitals in England. Method: A multi-methods study involving documentary analysis, interviews, questionnaires and participant observation with 1251 participants (staff, carers and people with ID) in six hospitals in England was conducted. Results: To various degrees, the participating hospitals failed to identify patients with ID in their care. Hospital-based ID liaison nurses were best able to provide lists and numbers of patients with ID, but even these were not comprehensive. The failures were due to lack of integration of record systems with other healthcare services, including primary care; lack of effective flagging systems within hospitals; lack of staff knowledge and skill in identifying ID; and widespread staff reluctance to record the presence of ID. Conclusion: A nationally integrated system for sharing information about ID across healthcare services should be introduced, as well as effective flagging systems at the point of referral or entry into hospital care.

Symposium 2.15 Health, Health Services and People with IDD Behaviour and emotional problems in children with developmental disabilities: results of an Australian population level survey K. Gray ([email protected]), B. Tonge, J. Taffe, S. Einfeld, M. Sanders & K. Sofronoff Department of Psychiatry, Southern Clinical School, Early in Life Mental Health Service, Monash University Centre for Developmental Psychiatry & Psychology, Monash, Australia Aim: This paper will discuss an exciting new clinical research development in the delivery and evaluation of a population level intervention for behaviour and emotional problems in children with developmental and intellectual disabilities being undertaken across three states in Australia. Method: Data will be presented from a statewide survey of parents and caregivers of children with


disabilities aged 2–10 years in Victoria and Queensland, Australia. In addition to providing population level information on behaviour and emotional problems, this survey of more than 800 families provides information about the needs of families, the type of interventions they require, and how services and practitioners are best able to meet their requirements. Results: Information will be presented on the association between child behaviour and emotional problems and key factors such as socioeconomic hardship and the financial costs associated with raising and supporting a child with a disability. The relationship between child behaviour problems, family functioning and parental mental health and wellbeing will also be explored. Conclusion: The implications of the results in relation to the provision of family-focused interventions at a population level will be discussed.

Hospital staff experiences of caring for children and youth with ID and their families: it’s the little things that make the difference! K.Oulton ([email protected]), S. Kerry, L. May, D. Sell, C. DeSousa & F. Gibson Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital, UK Aim: The aim of the study was to elicit healthcare professionals’ perceptions of their capacity to meet the needs of children and youth with ID and their families. Method: An ethnographic approach was used to observe the everyday life of children and youth with ID and their families during hospitalisation, including their interactions with staff. Semi-structured interviews were conducted with 25 hospital staff from a wide range of professional backgrounds to explore their experience of caring for this population of patients and their families. Data were analysed using the Framework Approach. Results: Meeting the specific non-medical needs of children and youth with ID can present a challenge to staff working in a paediatric tertiary hospital where the focus is on providing highly specialist, complex medical care for all its patients. Key ‘barriers’ include a lack of clear understanding of which children and youth have ID, how much they can understand and how best to communicate with them. Conclusion: Staff report that taking an individualised approach to care that places greater emphasis on what it means for individual children and youth to have ID and the ‘little things’ that make a big difference to them will result a more improved hospital experience for all those involved.

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with intellectual disabilities M. Rivas-Velarde ([email protected]) Sydney Medical School, Sydney University, Australia Aim: This research explores how the expressed health needs of indigenous peoples with intellectual disabilities (ID) resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Method: A qualitative approach was used to study perceptions of indigenous peoples with ID about access and expectations regarding their health care. Their views were triangulated with those of healthworkers, senior bureaucrats and United Nations delegates. A exploratory case study methodology was implemented comparing the three jurisdictions of Australia, Mexico and New Zealand. Results: Poverty, discrimination and disenfranchisement emerged as major determinants of the ill-health experienced by indigenous peoples with ID. The reach of CRPD Article 25 on indigenous health was highly limited within the three case studies, primarily due to the lack of input of indigenous peoples on CRPD development, implementation and monitoring mechanisms both domestically and internationally. Conclusion: The outcomes of the study outline the need to build capacity and rights literacy across indigenous peoples with ID, while strengthening indigenous leadership and culturally driven approaches to health.

‘Unforeseen’ health issues as people with disability age: a wake-up call in rural and regional areas K.A. Willsher ([email protected]) University of South Australia, Whyalla, Australia Aim: Many children born with disability are now surviving to adulthood. There has been relatively little research on the social impacts of disability and co-morbidity in rural and regional areas. This research aimed to investigate parents’ views on access to health services in rural locations as their child ages. Method: The presenter conducted qualitative research using Feminist Standpoint theory to interpret the data from semi-structured, intensive interviews with 14 rural-dwelling parents/carers who had raised a child born with disability. Results: Themes that emerged were concerns for the future, access to services and transition to adult services. Nine adult children, who had not been expected to survive childhood, had developed co-morbidities such as cardiovascular disease or early dementia. This is coherent with a large literature indicating a high incidence of mental and physical comorbidities as people born with disability age. Difficulties in accessing



services, or poorly coordinated services in rural and regional areas, often led to late diagnosis and complications. Several parents had experienced difficulties in having their concerns about the child’s health appropriately addressed. Conclusion: Primary health care approaches addressing social determinants of health are required. At the very least, families should be involved in decision making.

Symposium 2.16 Health, Sleep and Obesity in People with IDD Comparison of sleep parameters and associated factors in a matched nationally representative population sample of persons with and without an intellectual disability N. Mulryan ([email protected]), E. Cleary, R. Carroll, B. Lawlor, P. McCallion & M. McCarron IDS-TILDA, Trinity College Dublin and Daughters of Charity Disability Support Services, Ireland Aim: The aim of this study was to report the prevalence and associated factors of sleep problems in a matched national sample of those aged over 50 and over with and without an intellectual disability (ID). Method: Data collected in the first wave of Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) included information on sleep parameters of 478 people with ID aged 50 and over, randomly selected from the National Intellectual Disability Database. These participants were matched for age, gender and geographical location with participants of a sister project reporting on the generic Irish population (TILDA). Results: Sleep dysfunction was highly prevalent in both cohorts however was significantly higher in those with ID. Conclusion: Sleep dysfunction is significantly more prevalent in those with an ID as compared to a matched national sample. The factors which influence sleep most in those with an ID also influence sleep in those in the generic population however the influence of those factors is greater in those with an ID. This is the first reported comparative study on sleep using matched, nationally representative cohorts.

Special needs for health care of people with intellectual or multiple disabilities J. Nicklas-Faust ([email protected]) Germany Aim: The aim of the study was to highlight the special health conditions and needs of people with intellectual or multiple disabilties in order to provide adequate care. Method: A systematic search of the relevant literature via medline (1988–2013) and a manual search on the topics of heath care for people with an intellectual or multiple disabilities were conducted. Relevant research was selected by screening the abstracts for results to special needs and special approaches in health care. Selected research was analyzed and summarized. Results: Certain conditions are correlated with disability and show at different times in life compared with people without a disability. Symptoms are often not typical and diagnoses often missed or delayed. Difficulties in communication and self-report add to the problems. Some conditions occur quite often; these include reflux oesophagitis, constipation, visual und hearing problems, orthopedic and neurological problems as well as psychiatric conditions. Checklists are presented which help to ameliorate the health care for people with intellectual or multiple disabilities. Conclusion: There are special health care needs, which can be met with knowlegde, experience and a systematic search for health problems.

Psychological treatment for sleep problems in adults with intellectual disabilities P. Triantafyllopoulou ([email protected]), P. McGill, P. Chiu & G. Murphy Tizard Centre, University of Kent, UK Aim: The aim of this randomised controlled trial was to assess the efficacy of psychological sleep treatment for severe sleep disorders in adults with intellectual disabilities (ID) and to assess changes in the adults’ daytime behaviour in relation to such treatment. Method: 64 adults with ID and their carers agreed to take part in the study and individuals were randomly allocated to the treatment (n = 30) or the control group (n = 34). Sleep was assessed using both objective (e.g. actigraphy) and subjective (e.g. sleep diaries) measures and the individuals’ behaviour and intellectual ability were assessed via the Aberrant Behaviour Checklist (Aman & Sing, 1986) and the Adaptive Behaviour Scale – Residential and Community (Nihira et al., 1993) respectively. The intervention included 4 group sessions where treatment techniques such as graduated extinction, sleep hygiene and relaxation exercises were discussed. Results: No differences were found between the experimental and control groups, however, an improvement in sleep problems of initiating and maintaining sleep was shown for the total sample. Also significant correlations between the participants’sleep, intellectual ability and challenging behaviour were obtained.


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Conclusion: The data gathered from staff members who took part in the study revealed a type III error and a failure of staff to implement the interventions.

Obesity and hypertension in adolescents and adults with intellectual disability H. Yıldırım Sarı ([email protected]), M. Yilmaz, € Yesiltepe, Y. Tokem & H. Rowley E. Serin, S. Secgin Kısa, O. _ Nursing Department, Faculty of Health Science, Izmir Katip Celebi University, Turkey Aim: The aim of this study is to determine the rate of obesity and hypertension in individuals with intellectual disability (ID). Method: Obesity and hypertension rates were determined by measuring height, weight, waist and hip circumference and blood pressure of individuals with ID in three centres in _ Izmir, Turkey. The mean age of subjects participating in the study was 24 years (SD: 7.6, Min: 14-Max: 49) of which 234 (67.4%) were male and 113 (32.6%) female. Results: 37.3% of adults were of normal weight, 28% were overweight, 15.9% had 1st degree obesity, 5.9% had 2nd degree obesity, and 2.2% had 3rd degree obesity. Analysis of body mass index (BMI) of adolescents demonstrates that 46.1% are between the 5th and 85th percentiles, 9.2% between the 85th and 95th percentiles, 26.3% appear above the 95th percentile and 18.4% are below the 5th percentile. Sixty percent of subjects had an optimal systolic pressure, where 10.7% had measures indicative of stage 1 hypertension and 2.6% stage 2 hypertension. About 80% of adults had an optimal diastolic pressure, 7.4% had measures indicative of stage 1 hypertension, 1.8% stage 2, and 2.2% stage 3. Conclusion: The results of this study demonstrate that the rate of obesity and hypertension is high in adolescents and adults with ID.

Symposium 3.1 Health and Specific Syndromes Amino acids and cognitive deterioration in 22q11 deletion syndrome L. Evers ([email protected]), T. van Amelsvoort, J. Bakker & L. Curfs Koraalgroep, MFCG, Heel, and Governor Kremers Centre, Maastricht, The Netherlands Aim: One of the deleted genes in the 22q11 deletion syndrome is the PRODH gene, responsible for the formation of glutamate out of proline. Therefore we investigated the relation of psychopathology, IQ with levels of the amino acids proline, glutamate and glutamine. Method: We included 67 adult patients with the 22q11 deletion syndrome. These included patients with lower levels of intelligence and a history of deterioration. Psychopathology and IQ were determined. Levels of proline, glutamate and glutamine in urine were determined. With statistical analysis the relation between psychopathology and IQ, with proline, glutamate and glutamine were investigated. Results: Glutamate was significantly negatively related to IQ, with higher levels of glutamate in patients with lower IQ. Age was also related with glutamate, with higher glutamate levels in patients with increasing age, which is remarkable, because glutamate is most of the time neutral or negatively related with age. Conclusion: Because clinical deterioration comes with increasing age, we hypothesize that higher glutamate levels should be taken into account as a modulating factor of cognitive deterioration. As a possible explanation we think that in some patients excessive levels of glutamate can act as a neurotoxin, causing cognitive deterioration.

Health and social care resource use by individuals with fragile X in Canada and the UK A. Hassiotis ([email protected]), P. London, T. Bostock, K. Lakhdari, N. Adlard, G. Aubertin, P. Burge, F. Corbin, S. Gagnon & S. Barry Division of Psychiatry, University College London, UK Aim: Fragile X is a common genetic condition but there is lack of information on use of resources by those affected and their families. Method: A Delphi panel approach was adopted to gather and refine estimates based on expert opinion and consensus. Seven experts from Canada and six from the UK were recruited representing a variety of specialties. The questionnaire included a range of domains relating to health and social care services. All panelists were also asked to rate level of confidence in their estimation of resource use. Results: 900 data points were collected. Special education far exceeds service use for other services in young males. Aggression was also associated with higher estimation of service use. Females were deemed to require fewer services. Canadian panelists appeared more confident in their estimates than UK-based panelists. Conclusion: A credible estimation of use of services was produced by the Delphi process. This is the first study to generate a model of anticipated Fragile X resource use which can be used for an economic analysis of potential treatments for the disorder.

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Twenty-four hour response curve of melatonin in SmithMagenis syndrome K. Spruyt ([email protected]), W. Braam, M.G. Smits & L.M.G. Curfs Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands Aim: The aim of the study was to evaluate the 24-hour level of melatonin in individuals with Smith-Magenis syndrome with and without melatonin use at intake. Method: 32 children and 5 adults with Smith-Magenis syndrome underwent a clinical assessment of their melatonin level in saliva, from 12PM till next day 12PM. Levels were categorized into ≤0.5 lg/mL, between 0.5 and 50 lg/mL and >50 lg. Results: At intake melatonin was used by 13 children (35.1% of sample; 61.5% male) with mean age 6.8 3.0 years old. Whereas 19 children (51.4%; 7.7 4.9 years old; 63.2% male) and 5 adults (13.5%; 39.6 17 years old; 40% male) were not taking melatonin at intake. The levels of melatonin were only proportionally different between the 3 groups at the beginning and the end assessment. More specifically, at the first assessment more children on melatonin have a level above 50 lg/mL, while without prior melatonin use more adults have a level between 0.5 and 50 lg/mL and fewer children have a level above 50 lg/mL. At the last assessment, more adults without prior use of melatonin have a level between 0.5 and 50 lg/mL. Conclusion: Overall low daytime levels of melatonin were found in children with Smith-Magenis syndrome. Graphically, all individuals with Smith-Magenis syndrome showed an inverted endogenous melatonin pattern. Careful administration and titration of melatonin is advocated.

Caregiver reported sleep onset latency, night-waking and early waking in Smith-Magenis Syndrome K. Spruyt ([email protected]), W. Braam, M.G. Smits & L.M.G. Curfs Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands Aim: The study compares sleep onset latency, number of night-wakings and early waking complaints of individuals with Smith-Magenis syndrome with and without melatonin use. Method: At intake, caregivers of 32 children (50 regarding their ageing process. At baseline 594 persons were included (ID, N = 201; chronic schizophrenia, N = 135; substance abuse, N = 67; multiple disabilities, N = 63; control group without disabilities, N = 128). Instruments used are NOSGER, PAS, NAB and WHO ‘well-being 5’. Sociodemographic data and healthassociated data were also collected. Baseline and 1-year follow-up will be presented. Results: At t0 mean age of the control-control group was about 10 years younger, married status was more common (68% versus 3.7%) and gender proportions were nearly opposite (m/w 41, 4/58, 6% versus 51, 5/43, 3%). The use of medication is significantly lower (47% versus 87%). Pain is more common in the control group (36.7% versus 18.3%). The rating of well-being was similar (14.7 versus 13.25). Conclusion: Given the longitudinal design of the study, at this time only preliminary conclusions can be made based on baseline data.

Prevalence and factors associated with high anticholinergic burden in ageing people with intellectual disabilities in Ireland M. O’Dwyer ([email protected]), J. Peklar, I. Maidment, M. McCarron, P. McCallion & M. Henman Trinity College Dublin, Ireland Aim: Medications with anticholinergic effects may adversely affect cognitive function and clinical outcomes in the elderly. We sought to examine prevalence and factors associated with high anticholinergic burden in ageing people with intellectual disability. Method: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), nationally representative study on the ageing of 753 people with an ID ≥40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale(ACB) amended by a multi-disciplinary group with independent advice to account for the range of medications used in this population. Results: Of the population, 515 (68.5%) reported taking medications with possible or definite anticholinergic properties (ACB ≥1), of whom 368 (71.5%) reported taking medications with definite anticholinergic properties (ACB score of ≥2). 216 (28.7%) participants reported an ACB score of ≥5. There was a significant association between higher anticholinergic exposure and multimorbidity, particularly mental health morbidity, increasing age, living in a residential setting. Conclusion: Anticholinergic exposure was high. Cumulative measures of capturing the total burden in an individual may provide a useful measure of potential risk.



Prevalence and predictors of multiple medication use in an ageing population with intellectual disability in Ireland M. O’Dwyer ([email protected]), J. Peklar, M. McCarron, P. McCallion & M. Henman Trinity College Dublin, Ireland Aim: We sought to evaluate the prevalence of multiple medication use and to determine associated demographic and clinical characteristics in an ageing population with intellectual disabilities (ID). Method: Medication data (selfreport/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study on the ageing of 753 people with an ID ≥40 years randomly selected from the National Intellectual Disability Database. Medication use patterns were analysed according to demographic variables and reported chronic conditions. A multinomial logistic regression model identified factors associated with polypharmacy (5–9 medicines) and excessive polypharmacy (≥10 medicines). Results: Overall, 90% of participants reported use of medication. Polypharmacy was observed in 31.5% of participants and excessive polypharmacy in 20.1%. Severe/profound ID, age ≥65 years, living in a residential setting were associated with polypharmacy and excessive polypharmacy. There was no association between gender and multiple medication use. Reporting mental health or neurological disease were strongly associated with polypharmacy and excessive polypharmacy. Conclusion: Polypharmacy may be partly explained by the high prevalence of multimorbidity reported. Review of appropriateness of medication use is essential, as polypharmacy places ageing people with ID at risk of adverse effects.

Symposium 3.14 Interventions to Ameliorate Emotional Difficulties Group cognitive behavioural therapy for people with Asperger syndrome who have problems with anxiety: the initial results of the PAsSA pilot treatment trial P.E. Langdon ([email protected]), G.H. Murphy, E. Wilson, L. Shepstone, D. Fowler, D. Heavens, A. Malovic, A. Rose & L. Mullineaux Tizard Centre, University of Kent, UK Aim: Cognitive behavioural therapy is an effective treatment for anxiety in a variety of clinical populations, and there is a growing interest in exploring its effectiveness for people with Asperger syndrome who have mental health problems. The current study aims to examine whether modified group cognitive behavioural therapy for clinically significant anxiety in an Asperger syndrome population is likely to be efficacious. Method: This study is a randomised single-blind cross-over trial. Fifty-four participants were randomised into a treatment arm or a waiting-list control arm. During treatment, individuals received 3 sessions of individual cognitive behavioural therapy, followed by 21 sessions of group cognitive behavioural therapy. Primary outcome measures focused on anxiety. Secondary outcome measures focused on everyday social and psychiatric functioning, additional measures of anxiety and fear, depression, health-related quality of life and treatment cost. Results: The initial findings from this pilot trial suggest that group cognitive behavioural therapy could be helpful for people with Asperger syndrome, and a further definitive trial is warranted. The effects on anxiety, depression and social functioning will be presented, along with acceptability and feasibilty data. Conclusion: Group cognitive behavioural therapy is feasible with this population, but further work is needed to demonstrate effectiveness.

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Conclusions: This relatively small trial suggests that aspects of the treatment were helpful for people with Asperger syndrome and anxiety, but that further adaptations to the cognitive behaviroural therapy would be advisable. A larger trial is now required with an adapted programme to properly test its efficacy.

Emotion-based social skills training for children with autism spectrum disorder and mild intellectual disability: a controlled intervention study of 75 children in Australian primary schools B. Ratcliffe ([email protected]) Children’s Hospital at Westmead, University of Sydney, Australia Aim: Children with autism spectrum disorder (ASD) and mild intellectual disability (ID) have significant difficulties with social-emotional skills. This treatment versus control group trial aimed to evaluate the effectiveness of Emotion Based Social Skills Training for children with ASD and mild ID – an intervention designed to enhance mental health by teaching social-emotional skills. Method: Participants were 75 children (43 treatment; 32 controls) aged 8–12 years with ASD and mild ID. Fifteen school counsellors delivered the 16 session manualised intervention to students, parents and teachers in three modules over three school terms with a booster session at 6-month follow-up. Parent and teacher outcome measures of emotional competence, social skills and mental health were completed pre and post-treatment and at 6-month follow-up. Results: Emotion Based Social Skills Training significantly improved teacherreported emotional competence and the effect size was large. This improvement was sustained at 6-month follow-up. There was no significant change on parentreported outcome measures. Conclusion: Results suggest Emotion Based Social Skills Training improves emotional competence at school and that treatment gains are maintained over time. This study provides a valuable basis for future research into a novel intervention.

Symposium 3.15 ASD: Diagnosis and Behaviour Inclusion in diagnostics/health care: a multiprofessional approach for diagnosing autism in adults with intellectual disabilities T. Bergmann ([email protected]), M. Heinrich, A. Diefenbacher & T. Sappok Department of Psychiatry, Evangelisches Krankenhaus K€onigin Elisabeth Herzberge gGmbH, Berlin, Germany Aim: The high prevalence of undetected and thus untreated autism spectrum disorder (ASD) in adults with intellectual disabilities (ID) requires the development of diagnostic standards. To support the right for individual healthcare and education, a structured diagnostic procedure including a multiprofessional consensus conference has been established in a clinical setting. The quality of this approach which resulted in the diagnosis of approximately 250 individuals between 2008 and 2013 was evaluated. Method: Qualitative aspects of the case conference and the diagnostic process were assessed by staff members (N = 22) offering relevant diagnostic contributions using a questionnaire. Results: Behavioral observations from close caregivers in everyday environment were most important for the final diagnostic classification. The quality of the individual contributions did not correlate with affiliation to a specific profession, but with the frequency of participation in the consensus conference. All team members benefitted from attending the conference. Conclusion: A multiprofessional approach in ASD diagnostics was effective with particular importance of everyday-life observations by close caregivers and relatives. The development of standardized diagnostic ASD measures for these important informants is desirable.

Group cognitive behavioural therapy for people with Asperger syndrome who have problems with anxiety: views of the people with Asperger syndrome A. Malovic ([email protected]), P.E. Langdon, G.H. Murphy, E. Wilson, L. Shepstone, D. Fowler, D. Heavens, A. Rose & L. Mullineaux The Tizard Centre, University of Kent, UK

Diagnosing autism in people with multiple disabilities: introducing a new instrument G. de Vaan ([email protected]), M.P.J. Vervloed, H. Knoors & L. Verhoeven Radboud University of Nijmegen, Nijmegen, The Netherlands

Aim: A number of studies have established that people with Asperger syndrome have significant problems with anxiety. This paper is the second report of the PAsSA trial of adapted cognitive behavioural therapy for people with Asperger syndrome and anxiety, this time focusing on the individuals’ experiences. Method: This study is a randomised single-blind cross-over trial with 54 participants. During treatment, individuals received 3 sessions of individual cognitive behavioural therapy, followed by 21 sessions of group congitive behavioural therapy. We asked participants about their expectations of taking part in the trial, noting their group experiences, any perceived difficulties and their subjective insights on the overall treatment experience. Results: The views of the people with Asperger syndrome themselves were very variable: some found the group extremely helpful but some did not. A number said they would have preferred individual treatment. Participants also had strong views on the parts of the programme that were helpful and the parts that were not.

Aim: Currently, there are no instruments that can validly diagnose autism spectrum disorder (ASD) in people that have an intellectual disability (ID) with additional sensory disabilities. People with these disabilities show ASD typical behaviour regardless of the presence of ASD. This makes diagnosing ASD in this group difficult. The aim of the current study was to design a new diagnostic instrument that can accurately diagnose ASD in people with intellectual and sensory disabilities. Method: Observation of Autism in people with Sensory and Intellectual Shortcomings (OASIS) is a semi-standardised observational instrument that assesses the presence of ASD by evoking ASD typical behaviours in a playful setting. Behaviours are scored afterwards through video recordings. A total of 60 participants with multiple impairments were tested. Results: Using expert consensus as a gold standard for presence of ASD, a pilot study showed that OASIS can successfully differentiate people with and without ASD when they have multiple disabilities and inter-rater reliability, internal


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consistency and several measures of validity were good to excellent. These results and results and preliminary results of a larger sample will be discussed. Conclusion: OASIS is a new tool to diagnose ASD in people with sensory and ID reliably and validly.

Factors predicting social dysfunction in people with autism: a multiple mediation model approach L.O. Lundqvist ([email protected]) € Centre for Rehabilitation Research, Orebro University, Sweden Aim: The study’s aim was to examine whether sensitivity to touch can predict social dysfunction in individuals with autism spectrum disorder (ASD). € Method: All adults (n = 915) with intellectual disabilities (ID) in Orebro County, Sweden, were assessed in regard to autism, degree of social dysfunctions, communication deficits, hypersensitivity (light, sound, touch, smell, taste, and movement), and behavior problems (self-injurious, stereotyped and aggressive/ destructive behaviors). Data were analyzed in a multiple mediation model using LISREL. Results: Autism was related to social dysfunctions via three mediating factors: hypersensitivity to touch, communication deficits, and aggressive/ destructive behaviors. It should be noted that there was no support for a direct path from autism to social dysfunction variables, which means that the multiple mediation model fully explained the relationship between autism and social dysfunction. Conclusion: Social dysfunction in individuals with ASD is primarily mediated by hypersensitivity to touch. The skin’s sense of touch is thus an important channel for social information in individuals with ASD, which provides support for the initiative to reintroduce sensitivity to sensory stimuli in the diagnostic criteria for ASD in DSM-5.

Predictors of challenging behaviour among specialist mental health service users with intellectual disability and autism L. Underwood ([email protected]), J. McCarthy, E. Tsakanikos, T. Craig, P. Howlin & N. Bouras Forensic and Neurodevelopmental Science, Institute of Psychiatry at King’s College London, London, UK Aim: The study aimed to identify predictors of challenging behaviour among adults with intellectual disability (ID). Method: A cross-sectional study of 92 participants from a specialist mental health service for adults with ID in the UK was conducted. The presence/absence of ASD was confirmed using the Autism Diagnostic Observation Schedule. ASD symptomatology was measured using the Social Communication Questionnaire and challenging behaviour was assessed using the Developmental Behaviour Checklist. Results: Participants with ASD (N = 48) had significantly higher total Developmental Behaviour Checklist scores than those without ASD (N = 44; mean = 54.2 versus 29.2). Social Communication Questionnaire and Developmental Behaviour Checklist scores were significantly, positively correlated (r = 0.65, P < 0.001). ASD, severity of ID, age and presence of psychiatric disorder were entered as independent variables into a linear regression. Presence of ASD was the only significant predictor of Developmental Behaviour Checklist score with a standardised coefficient (b) of 0.68. Conclusion: Understanding which service users with ID have higher levels of challenging behaviour than others despite receiving psychiatric treatment, and the extent to which having ASD is a contributing factor, should inform the development of more effective services and lead to improved outcomes.

Symposium 3.16 Health Interventions for People with IDD Developing guided self-help packages for people with intellectual disability E. Chaplin ([email protected]), J. McCarthy, L. Underwood, S. Hardy, P. Cronin & L. Peyton Forensic and Neurodevelopmental Science, Institute of Psychiatry at King’s College London, London, UK Aim: Our programme aimed to develop a new evidence-based guided self-help package and a manual on how to deliver it to adults with intellectual disability (ID). Method: The Self-Assessment and INTervention pack (SAINT) was developed using service user and clinical opinion. The psychometric properties of SAINT were tested and it was evaluated in a pilot study. The authors developed a manual that will enable adults with ID to access guided self-help interventions. Results: SAINT has good reliability and validity. A single case experimental design study found promising evidence on its effectiveness. Conclusion: Guided self-help often requires a level of functioning that can unintentionally exclude people with ID. This programme has produced evidence-based materials that will facilitate the implementation of guided selfhelp for adults with ID.


Functional walking capacity following participation in a physical activity and exercise intervention K. Lante ([email protected]), R.J. Stancliffe, G.M. Davis, A. Bauman, S. Jan & H. Van Der Ploeg The University of Sydney, Australia Aim: Exercise and physical activity are associated with numerous beneficial physical and psychosocial outcomes. A lack of participation in exercise and physical activity among adults with intellectual disabilities (ID) may impede their quality of life. We assessed the effects of exercise and physical activity on the walking capacity of adults with ID. Method: Participants were randomly assigned to one of three treatments: a small, structured exercise group, individualised lifestyle physical activity, or a control group. Exercise specialists delivered a 3-month post-baseline intervention. Walking capacity was assessed using the 6-minute walk test at baseline, 3-months and 9-months. Results: Participants showed a significant improvement in walking distance over 6 minutes at 3-months, with improvement sustained up to 9-months follow-up. Compared to the lifestyle physical activity group, walking capacity of the structured exercise group improved significantly and approached significance compared to controls. Analysis by gender revealed an increased distance walked by males, while participants with Down syndrome consistently walked significantly fewer metres. Conclusion: Small-group, structured based exercise and physical activity delivered by exercise specialists improves functional walking capacity in adults with ID.

Psychosocial outcomes following participation in a physical activity and exercise intervention R.J. Stancliffe ([email protected]), K. Lante, G.M. Davis, A. Bauman, S. Jan & H. Van Der Ploeg Centre for Disability Research and Policy, The University of Sydney, Lidcombe, NSW, Australia Aim: Many adults with intellectual disabilities (ID) are very sedentary. In the general population, exercise participation is associated with more positive attitudes toward exercise and with reduced depression. We examined the effects of physical activity and exercise interventions for adults with ID on self-efficacy, attitudes towards exercise and psychosocial outcomes. Method: Participants were randomly assigned to one of three treatments: small group exercise, individualised lifestyle physical activity, or control group. Using self-report and/or proxy interview data we assessed attitudes (Exercise self-efficacy, Social support for physical activity, Exercise outcome expectations) and psychosocial outcomes (Depression, Health-related quality of life) at baseline, 3-months and 9months. Results: Relative to controls, participants in the lifestyle physical activity intervention group experienced significantly better outcomes on exercise self-efficacy at 3-months post-test. There was no significant between-group difference on depression, but improvement was limited due to floor effects. Conclusion: Participation in exercise was associated with improvements in exercise self-efficacy.

The feasibility and reliability of physical fitness tests in children with a moderate to severe intellectual disability M. Wouters ([email protected]), T.I.M. Hilgenkamp & H.M. Evenhuis Department of General Practice, Intellectual Disability Medicine, Erasmus Medical Centre, Rotterdam, The Netherlands Aim: Physical fitness is an important marker for health and can be measured using field tests. However, little information is available on suitable and reliable tests for children with moderate to severe intellectual disability (ID). In this study we investigate the feasibility and reliability of physical fitness measurements in these children. Method: A sample of 42 children with a moderate to severe ID, aged 4 to 18 years, were tested in March 2014. Tests include four strength tests of the Functional Strength Measurement (upperhand and underhand throwing, chest pass, standing long-jump) and the 6 minute walk test. Body composition was assessed with the body mass index and waist circumference. The children performed the fitness tests four times and the interrater and test-retest reliability of the above mentioned fitness tests were determined. Results: Results will include the feasibility (expressed in percentage withdrawal and reason of withdrawal) and reliability (Intraclass Correlation Coefficients, ICC) of the physical fitness tests. Conclusion: Conclusion will be drawn based on the results.



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Symposium 3.17 Health, Ill-Health and Diagnostic Systems

Symposium 3.18 Death and Bereavement in IDD

From ICD-10 to ICD-11 and people with disorders of intellectual development (PWDID) S. Cooray ([email protected]), R. Alexander, A. Roy, K. Purandre, J. Devapriam, A. Wijeratne, H. Kwok & J. Mendis Royal College of Psychiatrists, UK

Fit for purpose? Examining the occurrence of persistent complex-bereavement related disorder in intellectual disability S. Guerin ([email protected]), K. Lockhart, J. McEvoy & P. Dodd Centre for Disability Studies, School of Psychology, University College Dublin, Ireland

Aim: We wished to develop research-informed, pragmatic recommendations aimed at improving the clinical utility of the World Health Organisation (WHO) ICD-11 diagnostic criteria for mental disorders in persons with disorders of intellectual development (PWDID), to facilitate inclusion and equitable access. Method: In consultation with international experts and stakeholders including lower and middle income countries, we evaluated the evidence base underpinning ICD-10 and clinical utility in PWDID (also known as intellectual/ developmental disabilities). This included a systematic literature review and an exploratory national survey of problem behaviour. Results: The literature review revealed a dearth of evidence regarding the applicability of ICD-10 criteria for mental and behavioural disorders in PWDID and that existing criteria are heavily reliant on average cognitive function and linguistic skills; which are compromised to varying degrees in PWDID due to their limitations in both domains. The survey identified that PWDID referred to healthcare services present with a variety of problem behaviours with or without co-morbid mental disorders. Conclusion: In recognition of the limitations of the ICD-10 diagnostic criteria as applied to adult PWDID, including the option of utilizing behavioural equivalents, could enhance diagnostic accuracy and clinical utility for this population, thereby improving their access to resources, treatment and quality of life.

The ICD-11 and people with disorders of intellectual development (intellectual/developmental disability) (PWDID): a question of clinical utility S. Cooray ([email protected]) & K. Purandare The ICD-11/DID Working Group, Faculty of Intellectual Disability, Royal College of Psychiatrists, UK Aim: To critically explore the viability of introducing pragmatic modifications to the ICD-11 diagnostic criteria for mental disorders that would improve clinical utility in people with disorders of intellectual development (PWDID). Method: Systematic review and critical appraisal of the literature regarding the applicability of ICD/DSM IV diagnostic criteria for PWDID using Medline, PsychInfo, grey literature and expert opinion. Results: The applicability and clinical utility of diagnostic criteria for mental disorders in PWDID is poor. Conclusion: The use of internationally recognised diagnoses, despite imperfections, is fundamental to psychiatrists’ professional responsibility to provide high-quality, evidence-based care for patients. Recognising the limitations of the diagnostic criteria for mental disorders, the WHO aims to focus primarily on clinical utility in the upcoming ICD-11. It is also posited that it should be perceived within the context of ‘cumulative epistemic iteration’; that is, each successive revision improving on the previous version. Following critical analysis of the key issues in PWDID we propose pragmatic and effective strategies to improve clinical utility, research informed evidence and equity of access in this vulnerable population.

Abnormality versus normality in a perspective of inclusion: a clinical anthropological approach J. De Groef ([email protected]) Catholic University of Leuven, Belgium Aim: Persons with intellectual disabilities (ID) are very vulnerable to all kinds of exclusion due to their ID and secondly due to frequent mental health problems. In order to give further foundation and practical perspective for inclusion for people with ID and mental health problems, a theoretical framework about the distinction between normality and abnormality based on a psychodynamic anthropology concerning the mental health issue was developed. Method: A review of the psychodynamic literature in the context of the theory of Canguilhem was conducted and a hermeneutic scheme used to inform the framework development. Results: The resulting framework contains an overview of the 4 main different fields of meaning of (ab)normality used daily in work and research. This framework prevents institutional and professional splitting between mental health and ID issues and also between mental health services and services for people with ID. It promotes an inclusive approach among service providers. Conclusion: Professionals needs a framework that contains the 4 different fields of meaning of (ab)normality, in order to think and work with people with ID and mental health problems in an inclusive way.


Aim: Persistent Complex Bereavement-Related Disorder has been included in DSM-5. The aim of this study is to consider the relevance of the diagnostic criteria for this condition for adults with intellectual disabilities (ID). Method: Self and proxy reports of previously identified symptoms of complicated grief (including the DSM-5 criteria) are examined among a sample of adults with mild/moderate ID. Participants were required to have had a parental bereavement in the 2 years prior to their participation in the research. To date information has been gathered from 25 participants; data collection is ongoing. Results: Preliminary analysis explored the grief reactions evident among participants and found evidence of significant symptoms of complicated grief. When the data were examined using the criteria included in DSM-5 no participants met the required criteria. However it was interesting to note that more of the diagnostic criteria are met using self-report data compared to the proxy (paid carer) data. Conclusion: This study further supports the need to consider aspects of complicated grief in the ID population. However, the DSM-5 criteria for Complex Bereavement-Related Disorder specifically may not be fit for purpose and needs further consideration in this population.

The lack of reasonable adjustments as a contributory factor to premature death A. Marriott ([email protected]), P. Heslop, M. Hoghton, P. Fleming, P. Blair & L. Russ Norah Fry Research Centre, University of Bristol, UK Aim: In England, a Confidential Inquiry was held from 2010 to 2013 into premature deaths of people with intellectual disabilities (ID). This paper presents data about one of the direct contributory factors to premature death. Method: The Critical Inquiry investigated the deaths of 247 people with ID (aged 4 years and older) who had been living in an area of South West England. Results: The Critical Inquiry identified issues that directly contributed to premature deaths of people with ID. One of these was a lack of reasonable adjustments to help people to access health services. Reasonable adjustments are the modifications that services should make in terms of their approach or provision, to ensure persons with disabilities can access the service in the same way as the general population. In England there is a legal obligation under the Equality Act (2010) for services to proactively make reasonable adjustments. The Critical Inquiry found little evidence that reasonable adjustments were being made for people with ID on a day-to-day basis. Conclusion: When reasonable adjustments were made they made a significant difference to the individuals concerned but there was a lack of systemic embedding of this.

Disseminating research findings to ensure an impact in practice and policy A. Marriott ([email protected]), P. Heslop, M. Hoghton, P. Fleming, P. Blair & L. Russ Norah Fry Research Centre, University of Bristol, UK Aim: In England, a Confidential Inquiry was held from 2010 to 2013 into premature deaths of people with intellectual disabilities (ID). This paper presents information about dissemination of the findings. Method: The Critical Inquiry investigated the deaths of 247 people with ID who had been living in an area of South West England. It made key recommendations aimed at lessening the risk of premature death in people with ID. The Department of Health funded dissemination work following the launch of the Critical Inquiry report. Results: The dissemination programme has included: publication of articles in academic and practitioner journals; presentations locally, nationally and internationally in various settings; making presentation videos and a DVD using case studies. There have been regular meetings to discuss with Department of Health and National Health Services England taking the recommendations forward. An on-line forum, facebook and twitter have all been used to share information. Conclusion: In order to target key messages to a wide range of audiences it has been necessary to produce information about the findings in a variety of formats. It is important to ensure that policy-makers sign up to an action plan. Social media has been an effective mechanism for sharing information about events and resources.

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A survey of psychodynamic psychotherapy outcomes for a specialist learning disability loss and bereavement service G. Parkes ([email protected]) & R. Akther Specialist Learning Disability Service, Hertfordshire Partnership University NHS Foundation Trust, Ware, UK Aim: The Loss and Bereavement Service offers individual or group therapy to patients dealing with any kind of loss. This survey looked at changes in functioning, risk, distress, wellbeing and self-esteem. Method: The Rosenberg self-esteem scale, House Tree Person (HTP) and Clinical Outcomes in Routine Evaluation (CORE) were administered via a semi-structured interview before and after therapy. CORE has 4 domains: Wellbeing, Psychological symptoms, Functioning and Risk. A drop in scores of 5 or more is considered significant


improvement. When the HTP is used, the patient is asked to draw a house, a tree and a person. It illustrates patients’ view of themselves, world, ego and developmental level. A higher score on the Rosenberg scale indicates higher selfesteem. Results: 3 patients received individual therapy, 5 received group therapy, 1 dropped out and 2 didn’t complete measures. On the CORE, 4 improved in wellbeing, 5 improved in functioning, all improved in distress, and 5 had reduced risks. Five showed improvement on the HTP. Four improved in self-esteem. Conclusion: These measures show that psychodynamic psychotherapy benefits individuals’ wellbeing, self-esteem, functioning, distress, risk, identity, security and resilience. This adds to practise based evidence on good outcomes from psychodynamic psychotherapy in learning disability. One year follow-up is planned.
