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Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff-supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.

Background: Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people with intellectual disability. The aim of this study is to synthesise this existing knowledge from research published between 1999 and 2022., Methods: A structured systematic review using PRISMA guidelines was conducted, which searched three commonly used databases (Medline, PsycINFO and CINAHL) for research on the topic of bereavement and intellectual disability. The articles identified in this search were screened to identify those that addressed the issue of 'complicated grief', with all abstracts and subsequent full texts reviewed by two researchers., Results: In total, 179 abstracts were initially identified, with 34 articles eligible for full text screening and 18 papers reaching criteria for inclusion. Data relating to the studies' objectives were extracted under the headings of definition, defining principles, signs and symptoms, risk factors and treatments for complicated grief in intellectual disability. Thematic analysis of the extracted data was performed to identify key themes., Conclusions: This review highlights that people with intellectual disability are likely to experience complicated grief reactions and that complicated grief is both underestimated and a clinically significant condition for people with intellectual disability. Future research should work to clarify diagnostic criteria and identify appropriate interventions., (© 2022 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study., Method: A five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion., Results: A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence., Conclusion: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities., (© 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Health disparities for children with intellectual disabilities can be challenging to measure due to many other factors that can impact health and healthcare use. The aim of the current study was to use longitudinal cohort data to compare children with intellectual disability (ID) in Ireland between 2006 and 2014 on healthcare utilisation and unmet need, at ages 9 and 13, using a propensity score matching (PSM) approach., Methods: Using data from the Growing up in Ireland study, PSM was used to identify an appropriate control sample to compare with a sample of children with ID (n = 124). Participants were matched on variables that are known to influence healthcare utilisation to reduce the impact of confounding variables between groups so that differences between the groups can be estimated. Logistic regression was used to estimate effects at ages 9 and 13., Results: Children with ID were no more likely to have visited a general practitioner or emergency department in the past 12 months than children without ID. They did have a greater likelihood of visiting a doctor in a hospital in the past 12 months and of having an overnight stay in hospital by age 9. Primary caregivers of children with ID were more likely to report unmet health needs at ages 9 and 13., Conclusions: This approach is a novel means of comparing healthcare use in this population by balancing the impact of other factors that may result in inequities, to which children with ID may be more vulnerable., (© 2022 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Research indicates that adults with intellectual disabilities are living longer. However, there is limited research on how this affects health and care needs., Objective: The present study aimed to examine the health and social care needs of older adults with intellectual disabilities in Ireland using multiple informants., Methods: Data were gathered from a sample of 20 adults aged 50 years or older (Mean = 59.1, SD = 5.9, range = 50-72; 11 female). The sample included individuals with mild (n = 7), moderate (n = 10) and severe/profound (n = 3) intellectual disabilities. Additional data from keyworkers (n = 19) and family carers (n = 15) provided a more complete understanding of needs., Results: Results revealed some areas of agreement and difference between adults with intellectual disability and their carers regarding the social care, employment, retirement, physical and mental health needs of this population., Conclusions: The findings of this study have potential implications for the provision of high-quality services for older adults with intellectual disabilities., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Complicated grief involves the experience of grief-related symptoms at a time, and severity, beyond which could be considered adaptive, while persistent complex bereavement disorder (PCBD) has been identified as a condition that requires further study in the typical population. The aims of this study are to (1) explore the symptoms of complicated grief associated with parental bereavement as self-reported by adults with intellectual disabilities (IDs) who have experienced a parental bereavement and (2) conduct an initial examination of how the existing criteria for PCBD apply to this group., Methods: This study uses a comparative group design, assessing self and staff (proxy) reports for a group of parentally bereaved individuals and a matched group of non-bereaved individuals using the Complicated Grief Questionnaire - ID Self-Report. Participants were 46 individuals with ID, 30 (65%) of whom who had experienced a parental bereavement within the previous 2 years. The age range was 23-67 years (mean = 43.8; SD = 10.3)., Results: The results highlight the presence of a range of symptoms of complicated grief in individuals' self-reports, although there was some evidence that separation distress-related symptoms were more apparent. An analysis of individual symptoms showed patterns of higher reports among the bereaved group as would be expected. Comparing staff and self-reports, key criteria showed higher levels in self-reports among the bereaved group., Conclusions: This study has demonstrated the capacity of people with ID to self-report personal experience of symptoms of complicated grief, when appropriate and accessible assessment tools are used. Some symptoms were more evident among bereaved individuals (compared with non-bereaved participants), and they tended to be from separation distress criteria. This may indicate the relevance of these symptoms for people with ID and question the existing criteria for PCBD in this population, which may have clinical implications for supporting people with ID experiencing a more complicated bereavement response., (© 2021 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Periodontal (gum) disease and dental caries (tooth decay) are the most common causes of tooth loss; dental plaque plays a major role in the development of these diseases. Effective oral hygiene involves removing dental plaque, for example, by regular toothbrushing. People with intellectual disabilities (ID) can have poor oral hygiene and oral health outcomes., Objectives: To assess the effects (benefits and harms) of oral hygiene interventions, specifically the mechanical removal of plaque, for people with intellectual disabilities (ID)., Search Methods: Cochrane Oral Health's Information Specialist searched the following databases to 4 February 2019: Cochrane Oral Health's Trials Register, the Cochrane Central Register of Controlled Trials (CENTRAL; Cochrane Register of Studies), MEDLINE Ovid, Embase Ovid and PsycINFO Ovid. ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform were searched for ongoing trials. The Embase search was restricted by date due to the Cochrane Centralised Search Project, which makes available clinical trials indexed in Embase through CENTRAL. We handsearched specialist conference abstracts from the International Association of Disability and Oral Health (2006 to 2016)., Selection Criteria: We included randomised controlled trials (RCTs) and some types of non-randomised studies (NRS) (non-RCTs, controlled before-after studies, interrupted time series studies and repeated measures studies) that evaluated oral hygiene interventions targeted at people with ID or their carers, or both. We used the definition of ID in the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10). We defined oral hygiene as the mechanical removal of plaque. We excluded studies that evaluated chemical removal of plaque, or mechanical and chemical removal of plaque combined., Data Collection and Analysis: At least two review authors independently screened search records, identified relevant studies, extracted data, assessed risk of bias and judged the certainty of the evidence according to GRADE criteria. We contacted study authors for additional information if required. We reported RCTs and NRSs separately., Main Results: We included 19 RCTs and 15 NRSs involving 1795 adults and children with ID and 354 carers. Interventions evaluated were: special manual toothbrushes, electric toothbrushes, oral hygiene training, scheduled dental visits plus supervised toothbrushing, discussion of clinical photographs showing plaque, varied frequency of toothbrushing, plaque-disclosing agents and individualised care plans. We categorised results as short (six weeks or less), medium (between six weeks and 12 months) and long term (more than 12 months).Most studies were small; all were at overall high or unclear risk of bias. None of the studies reported quality of life or dental caries. We present below the evidence available from RCTs (or NRS if the comparison had no RCTs) for gingival health (inflammation and plaque) and adverse effects, as well as knowledge and behaviour outcomes for the training studies.Very low-certainty evidence suggested a special manual toothbrush (the Superbrush) reduced gingival inflammation (GI), and possibly plaque, more than a conventional toothbrush in the medium term (GI: mean difference (MD) -12.40, 95% CI -24.31 to -0.49; plaque: MD -0.44, 95% CI -0.93 to 0.05; 1 RCT, 18 participants); brushing was carried out by the carers. In the short term, neither toothbrush showed superiority (GI: MD -0.10, 95% CI -0.77 to 0.57; plaque: MD 0.20, 95% CI -0.45 to 0.85; 1 RCT, 25 participants; low- to very low-certainty evidence).Moderate- and low-certainty evidence found no difference between electric and manual toothbrushes for reducing GI or plaque, respectively, in the medium term (GI: MD 0.02, 95% CI -0.06 to 0.09; plaque: standardised mean difference 0.29, 95% CI -0.07 to 0.65; 2 RCTs, 120 participants). Short-term findings were inconsistent (4 RCTs; low- to very low-certainty evidence).Low-certainty evidence suggested training carers in oral hygiene care had no detectable effect on levels of GI or plaque in the medium term (GI: MD -0.09, 95% CI -0.63 to 0.45; plaque: MD -0.07, 95% CI -0.26 to 0.13; 2 RCTs, 99 participants). Low-certainty evidence suggested oral hygiene knowledge of carers was better in the medium term after training (MD 0.69, 95% CI 0.31 to 1.06; 2 RCTs, 189 participants); this was not found in the short term, and results for changes in behaviour, attitude and self-efficacy were mixed.One RCT (10 participants) found that training people with ID in oral hygiene care reduced plaque but not GI in the short term (GI: MD -0.28, 95% CI -0.90 to 0.34; plaque: MD -0.47, 95% CI -0.92 to -0.02; very low-certainty evidence).One RCT (304 participants) found that scheduled dental recall visits (at 1-, 3- or 6-month intervals) plus supervised daily toothbrushing were more likely than usual care to reduce GI (pocketing but not bleeding) and plaque in the long term (low-certainty evidence).One RCT (29 participants) found that motivating people with ID about oral hygiene by discussing photographs of their teeth with plaque highlighted by a plaque-disclosing agent, did not reduce plaque in the medium term (very low-certainty evidence).One RCT (80 participants) found daily toothbrushing by dental students was more effective for reducing plaque in people with ID than once- or twice-weekly toothbrushing in the short term (low-certainty evidence).A benefit to gingival health was found by one NRS that evaluated toothpaste with a plaque-disclosing agent and one that evaluated individualised oral care plans (very low-certainty evidence).Most studies did not report adverse effects; of those that did, only one study considered them as a formal outcome. Some studies reported participant difficulties using the electric or special manual toothbrushes., Authors' Conclusions: Although some oral hygiene interventions for people with ID show benefits, the clinical importance of these benefits is unclear. The evidence is mainly low or very low certainty. Moderate-certainty evidence was available for only one finding: electric and manual toothbrushes were similarly effective for reducing gingival inflammation in people with ID in the medium term. Larger, higher-quality RCTs are recommended to endorse or refute the findings of this review. In the meantime, oral hygiene care and advice should be based on professional expertise and the needs and preferences of the individual with ID and their carers.

Background: The dearth of literature regarding how or when to intervene when an adult with intellectual disability is bereaved may impede clinical practice; this study therefore aimed to explore the current clinical psychology response, so as to enhance understanding of the role of the profession in supporting grief within this population., Method: A collective case study design was used. Data for six persons with intellectual disability, including interviews with parentally bereaved persons and involved staff members, were integrated into individual case stories for cross-case synthesis., Results: Data were analysed using thematic analysis. Five overarching themes illustrated that the clinical psychology role is broadly distributed and identified potentially complicating factors such as "gatekeeping" and "staff uncertainty.", Conclusions: A model of bereavement supports reflecting that by Read (Learning Disability Practice, 8, 2005, 31) is being approximated in clinical practice; further research is required to determine how best to implement this, and whether this meets the true needs of the population., (© 2017 John Wiley & Sons Ltd.)

Background: The importance of the therapeutic relationship in the delivery of palliative care is well recognised. Little has been published on the nature or quality of relationships formed between staff and patients with intellectual disabilities despite case reports suggesting that difficulties exist in providing palliative care to this group., Aims: This study was part of a project that aimed to describe the delivery of palliative care to people with intellectual disabilities in a region of Ireland and to conduct a corporate assessment of palliative care need. We detail findings that explore the nature and importance of the quality of relationship in the delivery of care., Methods: 91 staff from palliative care and intellectual disability services participated in 16 focus groups., Findings: Staff valued their relationships with service users, and felt that the quality of their relationship affected its therapeutic potential. Participants described factors fundamental to the development of quality relationships. Palliative care and intellectual disability staff commented on the importance of trust, of continuity of relationship and of knowing the individual. However, palliative care staff admitted to difficulties in these areas when providing care to people with intellectual disabilities. It appeared that quality of care was affected in situations where staff failed to form authentic relationships., Conclusions: This study adds to our knowledge of the processes of delivery of care to people with intellectual disabilities. The description of difficulties experienced by palliative care staff gives us an opportunity to develop strategies to improve the quality of services provided., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Background: Suicidality in people with intellectual disability has not been extensively researched., Aim: To identify the nature of the research that has actually been conducted on this topic., Method: A search of research databases was conducted according to predefined criteria. Key information was extracted and rated for methodological merit., Results: Twenty-four studies met the inclusion criteria for this systematic review. The aspects of suicidality investigated, which varied among studies, included suicidal attempts, behavior, ideation, and completed suicide. Thirteen studies highlighted risk factors for suicidality in this population. The most frequently noted risk factors were a concurrent mental health difficulty and the level of intellectual disability. Eight studies referred to people with intellectual disabilities' understanding of the concept of death or suicide. Various methodological issues were identified in the studies included., Conclusions: In what we believe to be first systematic review of suicidality in people with intellectual disabilities, it was apparent that well-designed, standardized research studies on the topic are scarce. There is consequently limited evidence to guide prevention and intervention strategies for suicidality in this population.

Oral health training is often introduced into community-based residential settings to improve the oral health of people with intellectual disabilities (ID). There is a lack of appropriate evaluation of such programs, leading to difficulty in deciding how best to allocate scarce resources to achieve maximum effect. This article reports an economic analysis of one such oral health program, undertaken as part of a cluster randomized controlled trial. Firstly, we report a cost-effectiveness analysis of training care-staff compared to no training, using incremental cost-effectiveness ratios (ICERs). Effectiveness was measured as change in knowledge, reported behaviors, attitude and self-efficacy, using validated scales (K&BAS). Secondly, we costed training as it was scaled up to include all staff within the service provider in question. Data were collected in Dublin, Ireland in 2009. It cost between €7000 and €10,000 more to achieve modest improvement in K&BAS scores among a subsample of 162 care-staff, in comparison to doing nothing. Considering scaled up first round training, it cost between €58,000 and €64,000 to train the whole population of staff, from a combined dental and disability service perspective. Less than €15,000-€20,000 of this was additional to the cost of doing nothing (incremental cost). From a dental perspective, a further, second training cycle including all staff would cost between €561 and €3484 (capital costs) and €5815 (operating costs) on a two yearly basis. This study indicates that the program was a cost-effective means of improving self-reported measures and possibly oral health, relative to doing nothing. This was mainly due to low cost, rather than the large effect. In this instance, the use of cost effectiveness analysis has produced evidence, which may be more useful to decision makers than that arising from traditional methods of evaluation. There is a need for CEAs of effective interventions to allow comparison between programs. Suggestions to reduce cost are presented., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

This study assessed the impact of a multitiered oral health educational program on the oral health and oral hygiene of people with intellectual disabilities (ID). In a controlled pretest, posttest trial, with cluster randomization, a pyramidal training program was delivered to residential staff who cared for a randomly allocated, purposively stratified intervention group of people with ID living in community care homes. A control group lived in centers where staff received no training. Clinical measures were carried out pre- and posttest. Difference in Modified Gingival Index (MGI) and Plaque Index (PI) was measured posttest using ANCOVA. Seventy-six participants took part, representing 49.0% of the invited sample (n = 155). Fourteen did not receive clinical examination. There was one dropout 6-9 months later. A 10.5% and 8.5% reduction in mean MGI and PI was evident at posttest but did not show statistically significant difference, when controlling for baseline covariates (p > 0.05, ANCOVA). Mean MGI and PI scores were not significantly different among people with ID whose care staff had and had not received oral health training. Limitations are discussed. The results indicate that this program failed to significantly improve oral health or oral hygiene, despite the intervention being "educationally" successful. More research is needed., (© 2015 Special Care Dentistry Association and Wiley Periodicals, Inc.)

Background: This study aimed to generate prioritised goals for oral health services for people with disabilities as a first step in meeting the need for evidence based oral health services for people with disabilities in Ireland., Methods: The study used a three round modified e-Delphi method, involving dental service professionals and people with disabilities or their representatives, in Ireland. Three rounds were completed online using SurveyMonkey. Round 1 asked: "List what you think dental services for people with disabilities in Ireland should be like." Items for subsequent rounds were generated from responses to Round 1. Round 2 and Round 3 used 5 point Likert scales to rank these items by priority: from No Priority (1) to Top Priority (5). Consensus was achieved on each item where at least 80% of respondents considered an item either High or Top Priority. A consensus meeting concluded the process., Results: Sixty-one panelists started and 48 completed the survey. The Delphi panel agreed on level of priority for 69 items and generated 16 consensus statements. These statements covered a range of topics such as access to care, availability of information and training, quality of care, dental treatment and cost. A recurrent theme relating to the appropriateness of care to individual need arose across topics suggesting a need to match service delivery according to the individual's needs, wants and expectations rather than the disability type/diagnosis based service which predominates today., Conclusions: This process produced a list of prioritised goals for dental services for people with disabilities. This creates a foundation for building evidence-based service models for people with disabilities in Ireland.

Objectives: To assess the impact of a multi-tiered oral health education programme on care staff caring for people with intellectual disability (ID)., Methods: Postal questionnaires were sent to all care staff of a community-based residential care service for adults, randomly assigned to control and intervention groups. A specifically developed training programme was delivered to residential staff nominees, who then trained all staff within the intervention group. The control group received no training. Post-test questionnaires were sent to both groups. Paired-samples t-test was used to compare oral health-related knowledge (K) and behaviour, attitude and self-efficacy (BAS) scores., Results: Of the initial 219 respondents, 154 (response rate between 40% and 35.8%, with attrition rate of 29.7% from baseline to repeat) returned completed questionnaires at post-test (M=8.5 months, range=6.5-11 months). Control and intervention groups were comparable for general training, employment and demographic variables. In the intervention group, mean Knowledge Index score rose from K=7.2 to K=7.9 (P<0.001) and mean BAS scale score rose from BAS=4.7 to BAS=5.4 (P<0.001). There was no statistically significant increase in mean scores from test (K=7.0, BAS=4.7) to post-test (K=7.2, BAS=4.9) for the control group., Conclusions: Mean scores regarding knowledge, attitude, self-efficacy and reported behaviour increased significantly at 8.5 months in staff where training was provided. The results indicate that a multi-tiered training programme improved knowledge, attitude, self-efficacy and reported behaviour amongst staff caring for people with ID., (© 2012 John Wiley & Sons A/S.)

Objective: The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland., Method: Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis., Results: Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was "wrong." Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities., Significance of Results: Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

Background: Few empirical studies have compared quality and outcomes for residents with intellectual disability across intentional communities such as those organised by the Camphill communities in Ireland., Method: Using a multi-element research protocol developed for an earlier large study, data were gathered about the characteristics of N = 29 participants living in life-sharing residences organised by Camphill, management procedures, and outcomes for residents. Comparable data were available for N = 125 adults in group homes or campus residences., Results: Camphill residents reported a smaller size of household, higher staffing ratios, homely living areas, low levels of institutionalised practices such as social distance, reciprocal relationships with houseparents, and well-developed management procedures, as well as less choice, but were not found to be better on a range of other objective measures., Conclusion: Although modest in scale, present findings suggest that the value of applying distinctive benefits of life-sharing communities in more typical residential settings for people with intellectual disability should be investigated further to inform current policy debates.

Current research indicates that older persons with intellectual disabilities (ID) are a growing population with very specific needs. There are few existing studies that identify and characterise these needs. This study aimed to assess the health and social care needs of a group of older persons with ID in a community-based service in Ireland. The Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short form (CANDID-S) was used to identify the health and social needs of 75 older persons with ID in a community-based service who were over the age of 50. The mean age of the sample was 57.6 years (SD=5.4, range 50-72) and 37.3% had mild ID, 46.7% had moderate ID and 16% had severe or profound ID. The most common 'unmet needs' reported were basic education and money budgeting (the ability to independently manage one's own finances). The top-rated 'met needs' were food and daytime activities. Participants with severe or profound ID reported significantly more 'unmet needs' than those with mild or moderate ID. The current study identified education and financial skills as unmet needs for older persons with ID, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options. Further research should be carried out to inform a comprehensive evidence base of the health and social care needs of this group., (Copyright 2009 Elsevier Ltd. All rights reserved.)

This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the improvement in the quality of data contained on the NIDD. A nationally representative sample was generated from the NIDD. Twenty-five auditors were recruited from senior staff within statutory and voluntary intellectual disability services and trained by the authors. They carried out 250 clinical interviews with individuals with ID, their families and/or paid carers, using structured questionnaires. The data collected were analysed using frequency analyses and compared with the existing NIDD data set to assess accuracy. Qualitative information was also collected. Overall, the results from the audit indicate that almost three quarters (72.2%) of all the data recorded on the NIDD are accurate, with 19.3% inaccurate, and 8.5% of the sought audit data not returned. The audit found that the NIDD significantly overestimated the need for enhanced residential care services. The study highlights the need for clinician and service user involvement in specialist service data collection, in order to both conduct valid research and to best plan for ID service development., (Copyright 2009 Elsevier Ltd. All rights reserved.)

It is posited within the literature that the sexualised challenging behaviour of adults with intellectual disability may be influenced by low levels of sexual knowledge, lack of sexual experience and unmet sexual needs. In this study, individuals with sexualised challenging behaviour were identified and matched for gender, age and ability level with individuals recruited to the non-sexualised and no challenging behaviour groups. All (n=24) were interviewed using the Socio-Sexual Knowledge and Attitudes Tool - Revised (SSKAAT-R) and the Sexual Knowledge, Experience and Needs Scale for Intellectual Disability (Sex-Ken-ID) to assess their sexual knowledge, experience and needs. Adaptive behaviour was measured as a covariate. In the current study, contrary to expectations in the wider literature, the sexualised challenging behaviour group showed significantly higher levels of sexual knowledge in several areas when adaptive behaviour was controlled. Their needs in relation to Dating and Intimacy were also significantly higher but no differences were found between groups in relation to sexual experience. The implications of these findings for service provision are outlined along with the considerations of directions for future research.

Purpose of Review: The aim of this article is to present and synthesize recent research on grief and bereavement in people with intellectual disabilities, incorporating relevant studies with the general population., Recent Findings: Work in the general population is currently focusing on achieving greater clarity in our understanding of typical and atypical reactions to grief. Although much of this research is relevant to people with intellectual disabilities, this group also presents unique challenges. These include variation in understanding of death, a continuum of grief reactions including pathological or complicated grief, and additional demands faced by professional carers and staff working in this area. However, the research activity is somewhat limited in that it has relied on small-scale studies., Summary: The possible recognition of prolonged grief disorder as a distinct clinical entity will have a significant impact on research and intervention of people with pathological or complicated grief. To date, no prospective study of grief and bereavement has been conducted among people with intellectual disabilities. This is essential to best understand the course of grief and complicated grief in people with intellectual disabilities and minimize the levels of functional impairment.

The Attention-Distraction, Inhibition-Excitation Classroom Assessment Scale (ADIECAS) [Evans, P. L. C. (1975). Inhibition and stimulus generalization in the discrimination learning of ESN(S) and ESN(M) children. Unpublished Ph.D. thesis. Manchester, UK: University of Manchester] assesses attention-related difficulties in children with intellectual disabilities (ID). The present study explored the psychometric properties of the ADIECAS with a sample of 84 children with moderate and severe ID whose teachers completed the ADIECAS and the Conners' Teachers Rating Scale [Goyette, C. H, Conners, C. K., & Ulrich, R. F. (1978). Normative data on revised Conners' parent and teachers rating scales. Journal of Abnormal Child Psychology, 6, 221-236]. Following factor analysis the Evans and Hogg [Evans, P. L. C., & Hogg, J. (1984). A classroom rating scale for use with mentally retarded children. British Journal of Clinical Psychology, 23, 187-194] structure was the most appropriate for use with this sample. Moderate to strong positive relationships were found between the ADIECAS and the Conners', and the ADIECAS factors were significant predictors of the Conners' subscales. This study provides further support for the ADIECAS as a reliable and valid measure of ADHD-related symptoms among children with moderate and severe ID.

This is the first study to compare the social competence of children with moderate intellectual disability in inclusive versus segregated school settings in the Republic of Ireland. A convenience sample was recruited through two large ID services. The sample comprised 45 children across two groups: Group 1 (n=20; inclusive school) and Group 2 (n=25; segregated school). Parents and teachers completed the Strengths and Difficulties Questionnaire and the Adaptive Behaviour Scale-School: 2nd edition. A series of 2 x 2 ANOVAs were carried out on social competence scores using educational placement type (inclusive vs segregated school) and proxy rater (parent vs teacher) as the independent variables. Key findings indicated that children in inclusive schools did not differ significantly from children in segregated schools on the majority of proxy ratings of social competence. This supports the belief that children with intellectual disabilities can function well in different educational settings. Present findings highlight the importance of utilising the functional model of ID when selecting and designing school placements for children with moderate ID.

Introduction: Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population., Aims: To examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience., Method: A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The questionnaires were also administered to a matched comparison group, who had not been bereaved., Results/conclusions: This carer-based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.

Background The prevalence of features of attention deficit hyperactivity disorder (ADHD) in children with intellectual disabilities (ID) in Irish schools is unknown. The aim of this study was to examine the prevalence of features of ADHD in a special school, in order to ascertain the number of children who may need further assessment for ADHD. The study also explores the reliability of the Conners Teachers Rating Scale in this population. Method All teachers in a special school for children with ID were asked to complete the Conners Teachers Rating Scale and the Attention-Distractibility, Inhibition–Excitation Classroom Assessment Rating Scale, for those children whose parents had consented for them to take part in this study. Consent was obtained for 84 children a response rate of 71%, between the ages of 5 and 18 (mean = 10.5 years; SD = 3.7). Results The Conners Teachers Rating Scale was found to be internally reliable and had a normal distribution with our results. Overall, 55.9% of participants (47/84) had markedly elevated scores ( T > 69) for at least one of the target subscales, which were the ‘Hyperactivity’, ‘Inattention’ and the ‘ADHD Index’ subscales of the Conners Teachers Rating Scales. In addition, the findings would suggest that the Conners Teachers Rating Scale can be a useful screening tool in the population of school children with ID. Conclusions The study suggests that ADHD may be under diagnosed in children with ID. This has practical implications for the mental health needs of these children. It is recommended that further studies are carried out to determine the prevalence of ADHD in this population. [ABSTRACT FROM AUTHOR]