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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.

Background: Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method: Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants' perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings: Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion: The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Background: This paper considers the challenges regarding the development and use of self-report tools for sensitive, personal topics, in this case experiences of death and bereavement for individuals with intellectual disabilities (ID). These challenges are represented through the experience of the development of a self-report measure of complicated grief for use with individuals with intellectual disabilities. Materials and method: Focusing on the topic of bereavement, and using a case study format, this paper describes the development of a self-report measure for complicated grief. Results: Following three phases of questionnaire development, the Complicated Grief Questionnaire for People with Intellectual Disabilities (CGQ-ID) was adapted for use as a self-report measure with individuals with intellectual disabilities. The development process, informed by recommendations in the research literature, provides evidence that self-report is possible with individuals with intellectual disabilities even when the topic is as sensitive as bereavement and when abstract concepts such as emotions are involved. Conclusions: The adaptation process described here might provide a useful template for the development of other scales on sensitive topics.

Background: Respite care is an essential support for people with intellectual disabilities and their families; however, there is limited evidence examining different models of respite care. The present research examined quality of life among adults with intellectual disabilities using three different models of respite services in Ireland. Method: A quasi-experimental research method was adopted, which sought to determine differences in quality of life across the three respite care groups using two measures, (1) a self-reported quality of life scale and (2) a quality of life questionnaire filled out by a keyworker. Participants were people with mild/moderate intellectual disabilities (n = 82) and their keyworkers (n = 81). Results: Three distinct models of respite services were assessed: (a) Traditional- Residential respite; (b) Personalised Residential respite, and (c) Personalised Non-Residential respite. No differences emerged between the groups on self-reported quality of life; however, the groups differed on a proxy measure of quality of life with respect to Rights, emotional well-being, personal development and interpersonal relationships. Conclusion: The current data offer an initial exploration of self- and proxy-reported quality of life among persons with intellectual disabilities in receipt of novel models of respite care in Ireland.

Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.

Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging, when staff felt "pushed out" by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions: The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.

Background: Care staff are a major source of information and support for people with intellectual disabilities (ID) following a bereavement. How staff perceive the loss experience has implications for the quality and level of support provided to individuals with ID at times of personal loss. Method: Twenty-four staff members participated in the three focus groups aimed at examining staff knowledge and attitudes to bereavement, experiences of supporting people with ID during times of loss, the degree of service agency support and staff training needs. Results: Staff described service users' reactions to loss as for the most part similar to those observed in the typical population. Staff reported a lack of confidence and uncertainty, particularly around operational procedures following bereavement. Conflicting attitudes between themselves and the service agency around bereavement support procedures and a lack of awareness of the emotional impact of grief on service users and staff were highlighted by participants along with the need for quality information, skill development and further training. Conclusions: Service agencies need to be more proactive in supporting staff and in developing policy and guidelines in conjunction with practical training initiatives. There is a general need for greater awareness of the emotional impact of loss on staff and service users within specialist services.

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. (Contains 1 figure and 3 tables.)

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. (Contains 1 figure and 1 table.)

Background: Individuals with intellectual disabilities (I.D.) who are not accessing any specialist services are a vulnerable group, especially with advancing age. In Ireland, the National Intellectual Disability Database (N.I.D.D.) records the current and future service needs of people with intellectual disabilities, as well as those individuals who are not in receipt of services. Methods: This two-part study firstly used the N.I.D.D. to look at the number and characteristics of those older individuals outside services. Following this, a questionnaire was developed to examine the contact and assessment procedures practised with people who are listed on the N.I.D.D. as not requiring any specialist service. Results: Analysis of the database showed that 7.5% of people on the N.I.D.D. with moderate, severe or profound I.D., over the age of thirty and living at home with family were awaiting, or were not in receipt of specialist services. For these people not accessing any services, the questionnaire responses highlighted poor assessment practices including significant periods of time passing between contacts with the individual and limited contact regarding service planning. Conclusions: Specialist services need to be more pro-active in engaging vulnerable older individuals in services. A standardised approach needs to be developed in the assessment and monitoring of individuals and families refusing services.

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 Conner' 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. (Contains 5 tables.)

Given the research evidence that people with intellectual disability (ID) do grieve following bereavement, the present study aimed to describe and gather preliminary psychometric data for a version of the Inventory of Complicated Grief [Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., Bierhals, A. J., Newsom, J. T., Fasiczka, A., et al. (1995). Inventory of Complicated Grief: A scale to measure maladaptive symptoms of loss. "Psychiatry Research", 59, 65-79] adapted for use with this population. Carers completed the Complicated Grief Questionnaire for People with ID (CGQ-ID) for 76 individuals with ID, half of whom had experienced a parental bereavement within the last 2 years. The final scale and subscales (Separation Distress and Traumatic Grief) showed very good internal and inter-rater reliability and distinguished between the two groups. While the findings suggest that the CGQ-ID is suitable for identifying complicated grief-type symptoms among adults with ID, further research must be conducted to ascertain whether the findings can be replicated. (Contains 1 figure and 5 tables.)

The impact of a staff-training program on knowledge and confidence in supporting people with intellectual disabilities (ID) at the time of bereavement was examined. Thirty-three staff members from a Dublin, Ireland-based ID support service participated in the study. Both the training (n = 17) and control (n = 16) groups completed measures of confidence at the beginning and end of a 4-week period around supporting service users through a bereavement survey designed for the study, as well as the Staff Support and Satisfaction Questionnaire. During this interval, the training group completed a two-day training focusing on exploring existing strategies for supporting service users and providing staff with additional skills. Staff members also completed a survey of knowledge at the outset of the study. Over the 4 weeks, there was a significant increase in confidence among the training group, with no comparable changes in the control group. However, as predicted, neither group showed significant changes in general support or job satisfaction. The findings suggest that the training significantly increased staff members' confidence in their ability to respond to the challenges of support service users during bereavement. The study's findings also have a number of practical implications, including the need to provide appropriate support for staff.

Background: The influence of grief and bereavement on the lives of people with intellectual disabilities is currently receiving much interest. Many of the long-standing rituals associated with bereavement are still practised in Ireland, probably more than in many other Western countries. The present authors were interested in studying the experience of bereavement for people with intellectual disabilities in Ireland, and in making international comparisons. Method: This mixed method study was carried out using two questionnaires. The first was used to study national service and organisational approaches to bereavement. The second questionnaire (based on Murray et al. 2000 ) was used to study a staff group working in Ireland, assessing staff knowledge and understanding of the grieving process. The results were compared with a UK staff group who were assessed using the same questionnaire (Murray et al. 2000 ). Results: Staff and service attitudes were found to be very positive in supporting people with intellectual disabilities who have been bereaved. There is considerable understanding of the needs of bereaved individuals, and there is a high level of support in the participation in grief rituals. When compared with a UK staff group, Irish staffs were more inclined to encourage individuals to take part in bereavement rituals, though they had less actual experience in supporting bereaved people. Only one service had written bereavement guidelines. Conclusions: There appears to be cultural differences in the experience of bereavement for people with intellectual disabilities. This is important in the context of staff training and policy development in grief and bereavement.