An international study of public contact with people who have an intellectual disability.

BACKGROUND: People with intellectual disability (ID) are often socially isolated, and many experience stigma and discrimination. Increased contact with the general public is thought to overcome prejudices. This large-scale international study had three main aims: to determine the type and frequency of contact that the general public has with people with ID; to identify the personal characteristics of those who have greater contact; and to examine the public's level of comfort at the prospect of having contact with people with ID. METHOD: Self-completed online questionnaires were administered to nationally representative panels of respondents in 17 countries; totally 24 504 persons. Multivariate analyses were used to identify respondents more likely to have had frequent personal contact with persons with ID from those with infrequent or no contact and those respondents who were most comfortable at meeting a person with ID. RESULTS: Internationally around one in four of the general population reports having frequent personal contact with people who have an ID although this varied from 7% in Japan to 46% in Panama. The principal forms of contact were through friendships, neighbours or extended family members. Over all countries, volunteering and engagement with Special Olympics were the two main predictors of frequent personal contact followed by employment in the education, health or social care field, being a parent of children under 18 years, playing sports and being employed. People who reported frequent personal contact were also more comfortable at meeting a person with ID. CONCLUSIONS: This international dataset provides a baseline against which public contact can be compared across countries and changes monitored over time. The findings suggest ways in which greater contact can be promoted and making the public more comfortable at meeting people with ID.

Prevalence and risk of Down syndrome in monozygotic and dizygotic multiple pregnancies in Europe: implications for prenatal screening.

OBJECTIVE: To determine risk of Down syndrome (DS) in multiple relative to singleton pregnancies, and compare prenatal diagnosis rates and pregnancy outcome. DESIGN: Population-based prevalence study based on EUROCAT congenital anomaly registries. SETTING: Eight European countries. POPULATION: 14.8 million births 1990-2009; 2.89% multiple births. METHODS: DS cases included livebirths, fetal deaths from 20 weeks, and terminations of pregnancy for fetal anomaly (TOPFA). Zygosity is inferred from like/unlike sex for birth denominators, and from concordance for DS cases. MAIN OUTCOME MEASURES: Relative risk (RR) of DS per fetus/baby from multiple versus singleton pregnancies and per pregnancy in monozygotic/dizygotic versus singleton pregnancies. Proportion of prenatally diagnosed and pregnancy outcome. STATISTICAL ANALYSIS: Poisson and logistic regression stratified for maternal age, country and time. RESULTS: Overall, the adjusted (adj) RR of DS for fetus/babies from multiple versus singleton pregnancies was 0.58 (95% CI 0.53-0.62), similar for all maternal ages except for mothers over 44, for whom it was considerably lower. In 8.7% of twin pairs affected by DS, both co-twins were diagnosed with the condition. The adjRR of DS for monozygotic versus singleton pregnancies was 0.34 (95% CI 0.25-0.44) and for dizygotic versus singleton pregnancies 1.34 (95% CI 1.23-1.46). DS fetuses from multiple births were less likely to be prenatally diagnosed than singletons (adjOR 0.62 [95% CI 0.50-0.78]) and following diagnosis less likely to be TOPFA (adjOR 0.40 [95% CI 0.27-0.59]). CONCLUSIONS: The risk of DS per fetus/baby is lower in multiple than singleton pregnancies. These estimates can be used for genetic counselling and prenatal screening.

The impact on Iranian mothers and fathers who have children with an autism spectrum disorder.

BACKGROUND: To date, most research with families who have a child with autism spectrum disorder (ASD) has been undertaken in English-speaking countries. Increased levels of stress allied with poorer health have been commonly reported for mothers, with less attention paid to fathers. This study aimed to document the personal impact on Iranian mothers and fathers and identify the correlates of increased stress and poorer emotional well-being. METHOD: In all, 103 parents (58 mothers and 45 fathers) from 74 families who had a child with ASD volunteered to take part in the study. Each participant completed through interview, standardised rating scales of parenting stress, emotional well-being and family functioning as well as rating their child's autistic symptoms, including stereotyped behaviours. RESULTS: Mothers had significantly higher scores than fathers on measures of stress and emotional well-being. Although these variables were highly correlated, binary logistic regression identified that the poorer health was also associated with lower educational levels of the parents, more behavioural problems with the child and fewer autistic symptoms overall. A similar regression analysis of stress scores identified no gender differences but found that lower stress was associated with mothers and fathers who were joint caregivers and when the family lived with relatives. CONCLUSIONS: Iranian parents experience broadly similar responses to parents in other countries, which suggests that the impact of ASD outweighs any cultural differences that might otherwise be present in parental responses to caring for children. In common with families internationally, these parents are likely to benefit from opportunities to become better informed about ASD and the management of their child at home allied with increased support from families and friends.

Obesity and overweight in intellectual and non-intellectually disabled children.

BACKGROUND: Few studies have compared overweight and obesity in intellectually disabled (ID) and non-intellectually disabled (N-ID) children. This research compared the prevalence of overweight and obesity between a sample of 218 ID and 229 N-ID school pupils in Northern Ireland (NI). Comparison of the physical activity and dietary behaviour of the two groups of school pupils were also undertaken. METHODS: Each pupil completed (assisted if required) a food intake and physical activity questionnaire. Following this body mass index (BMI) and waist circumference were measured and recorded. RESULTS: Significantly more ID pupils (72, 33%) were overweight/obese compared with 55 (24%) of the N-ID pupils in accordance with their BMI. ID pupils also had significantly higher waist circumferences. Over a quarter of foods consumed by the pupils were fatty and sugary foods and close to 30% of these foods were eaten by the ID children. Pupils spent most of their time engaging in low levels of activity such as reading, watching TV, on games consoles and listening to music. Pupils with an ID spent fewer hours on moderate and high levels of activities compared with those children with N-ID. CONCLUSIONS: Results of this study found higher levels of overweight and obesity in this sample than in international published research. Additionally significantly higher numbers of ID pupils were overweight and obese indicating the need for future research and public health to focus on this issue.

Health conditions and support needs of persons living in residential facilities for adults with intellectual disability in Western Cape Province.

BACKGROUND: Intellectual disability (ID) is a relatively high-incidence disability, with an increased risk of poor physical and mental health. Persons with ID also have lifelong support needs that must be met if they are to achieve an acceptable quality of life. Little is known about these health conditions and support needs in the African context. This study examines persons over the age of 18 years with ID in residential facilities in Western Cape Province. OBJECTIVE: To analyse the health conditions and support needs of persons with ID in Western Cape Province. METHOD: A survey of residents' health conditions and support needs was conducted in face-to-face interviews with the managers of 37 out of 41 identified facilities. RESULTS AND CONCLUSION: The survey comprised 2 098 residents (54% of them female), representing less than 2% of the estimated population of persons with ID in the province. The survey suggests that such persons experience a wide range of health conditions (notably mental health and behavioural issues) but have limited access to general health care and rehabilitation services. Furthermore, the daily living supports required for an acceptable quality of life are limited. The findings highlight the need for better health and support provision to persons with ID.

Trends in the prevalence, risk and pregnancy outcome of multiple births with congenital anomaly: a registry-based study in 14 European countries 1984-2007.

OBJECTIVE: To assess the public health consequences of the rise in multiple births with respect to congenital anomalies. DESIGN: Descriptive epidemiological analysis of data from population-based congenital anomaly registries. SETTING: Fourteen European countries. POPULATION: A total of 5.4 million births 1984-2007, of which 3% were multiple births. METHODS: Cases of congenital anomaly included live births, fetal deaths from 20 weeks of gestation and terminations of pregnancy for fetal anomaly. MAIN OUTCOME MEASURES: Prevalence rates per 10,000 births and relative risk of congenital anomaly in multiple versus singleton births (1984-2007); proportion prenatally diagnosed, proportion by pregnancy outcome (2000-07). Proportion of pairs where both co-twins were cases. RESULTS: Prevalence of congenital anomalies from multiple births increased from 5.9 (1984-87) to 10.7 per 10,000 births (2004-07). Relative risk of nonchromosomal anomaly in multiple births was 1.35 (95% CI 1.31-1.39), increasing over time, and of chromosomal anomalies was 0.72 (95% CI 0.65-0.80), decreasing over time. In 11.4% of affected twin pairs both babies had congenital anomalies (2000-07). The prenatal diagnosis rate was similar for multiple and singleton pregnancies. Cases from multiple pregnancies were less likely to be terminations of pregnancy for fetal anomaly, odds ratio 0.41 (95% CI 0.35-0.48) and more likely to be stillbirths and neonatal deaths. CONCLUSIONS: The increase in babies who are both from a multiple pregnancy and affected by a congenital anomaly has implications for prenatal and postnatal service provision. The contribution of assisted reproductive technologies to the increase in risk needs further research. The deficit of chromosomal anomalies among multiple births has relevance for prenatal risk counselling.

Promoting social inclusion through Unified Sports for youth with intellectual disabilities: a five-nation study.

BACKGROUND: Although the promotion of social inclusion through sports has received increased attention with other disadvantaged groups, this is not the case for children and adults with intellectual disability who experience marked social isolation. The study evaluated the outcomes from one sports programme with particular reference to the processes that were perceived to enhance social inclusion. METHOD: The Youth Unified Sports programme of Special Olympics combines players with intellectual disabilities (called athletes) and those without intellectual disabilities (called partners) of similar skill level in the same sports teams for training and competition. Alongside the development of sporting skills, the programme offers athletes a platform to socialise with peers and to take part in the life of their community. Unified football and basketball teams from five countries--Germany, Hungary, Poland, Serbia and Ukraine--participated. Individual and group interviews were held with athletes, partners, coaches, parents and community leaders: totalling around 40 informants per country. RESULTS: Qualitative data analysis identified four thematic processes that were perceived by informants across all countries and the two sports to facilitate social inclusion of athletes. These were: (1) the personal development of athletes and partners; (2) the creation of inclusive and equal bonds; (3) the promotion of positive perceptions of athletes; and (4) building alliances within local communities. CONCLUSIONS: Unified Sports does provide a vehicle for promoting the social inclusion of people with intellectual disabilities that is theoretically credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identified that require further consideration to enhance athletes' social inclusion in the wider community.

A longitudinal study of the intra-country variations in the provision of residential care for adult persons with an intellectual disability.

BACKGROUND: Small-scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched. METHOD: The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10-year period and the extent of the intra-country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community-based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation. RESULTS: Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10-year period and the number of new admissions to this form of provision remained high in certain areas. CONCLUSIONS: The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.

The role of support staff in promoting the social inclusion of persons with an intellectual disability.

BACKGROUND: Past studies have found that people supported in more individualised housing options tend to have levels of community participation and wider social networks than those in other accommodation options. Yet, the contribution of support staff in facilitating social inclusion has received relatively scant attention. METHODS: In all 245 staff working in either supported living schemes, or shared residential and group homes, or in day centres completed a written questionnaire in which they rated in terms of priority to their job, 16 tasks that were supportive of social inclusion and a further 16 tasks that related to the care of the person they supported. In addition staff identified those tasks that they considered were not appropriate to their job. RESULTS: Across all three service settings, staff rated more care tasks as having higher priority than they did the social inclusion tasks. However, staff in supported living schemes rated more social inclusion tasks as having high priority than did staff in the other two service settings. Equally the staff who were most inclined to rate social inclusion tasks as not being applicable to their job were those working day centres; female rather than male staff, those in front-line staff rather than senior staff, and those in part-time or relief positions rather than full-time posts. However, within each service settings, there were wide variations in how staff rated the social inclusion tasks. CONCLUSIONS: Staff working in more individualised support arrangements tend to give greater priority to promoting social inclusion although this can vary widely both across and within staff teams. Nonetheless, staff gave greater priority to care tasks especially in congregated service settings. Service managers may need to give more emphasis to social inclusion tasks and provide the leadership, training and resources to facilitate support staff to re-assess their priorities.

Using personal goal setting to promote the social inclusion of people with intellectual disability living in supported accommodation.

The social exclusion of persons with intellectual disability is more marked in congregated than in individualised supported accommodation. Goal setting was used as a means of increasing individuals' choices and engaging support staff in personalised planning. Method People living in four different housing and support options were invited to identify up to three 'social inclusion' goals they wanted to achieve in the coming months. Nine months later, a review was undertaken to see if their goals had been attained and also to identify what had helped or hindered individuals in doing this. The goal selection was then repeated and reviewed again after a further 9 months. Results The most commonly chosen goals were around social activities with other people and over half the participants were reported to have attained at least one of their goals within 9 months, particularly those in supported living arrangements that had greater hours of individual staff support. In the second 9-month period, fewer people chose goals, although the same proportion as before were successful. The main reason given for goal attainment was the information and support provided by staff. Conclusions Goal setting seems a suitable way of promoting social inclusion as it can be tailored to the needs and aspirations of individuals, although extra efforts may be needed to implement and sustain it with staff across all accommodation options.

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems.

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.

Variations in the social inclusion of people with intellectual disabilities in supported living schemes and residential settings.

BACKGROUND: The social inclusion of tenants living in two forms of supported living schemes - those clustered on one site and those dispersed in neighbourhoods - is contrasted with more traditional provision found on the island of Ireland, namely, small group homes, residential homes and campus-style settings. METHODS: A standard pro forma based on measures used in past research was completed by the key-worker for each tenant or resident. In all, data were obtained on 620 persons, representing nearly all tenants in clustered schemes in Northern Ireland and over 40% of those in dispersed schemes. RESULTS: People in either form of supported living tended to have greater levels of social inclusion as measured by their use of community amenities and social contacts than did those in small group homes or residential homes, with participants from campus-style settings having the lowest levels of social inclusion. Moreover, multivariate analyses confirmed that the accommodation variable was a significant influence in addition to the social competence of the person. CONCLUSIONS: Although there were few differences between the two models of supported living, further research could usefully focus on decisions to place persons in either form of accommodation and their impact on wider indicators of social inclusion.

Adult persons with intellectual disabilities on the island of Ireland.

BACKGROUND: Information on the numbers of adult persons (aged 20 years and over) with intellectual disability (ID) is rarely collated at a national level. This is an impediment to service planning especially for a changing population. METHODS: A database of all persons in receipt of ID services has been operating in the Republic of Ireland since 1995. In Northern Ireland, regional databases can be used to provide similar information. RESULTS: A total of 25,134 persons were known to services in 2002; an overall prevalence for the island of 6.34 per 1,000. However this rate varied for different age groupings and across the two parts of the island. General population characteristics, as well as service factors, appear to account for this. Significantly more people lived with family carers in Northern Ireland. By 2021, it was estimated that the population would increase by over 20% with around one-third of persons aged over 50 years. CONCLUSIONS: These data illustrate the variations that exist in the numbers of adult persons with ID known to services across and within regions of a country. Hence caution must be exercised in extrapolating prevalence rates derived in one area to another. The availability of comparative national data highlights issues around the equitable funding and delivery of services.

Fair shares? Supporting families caring for adult persons with intellectual disabilities.

BACKGROUND: Although the majority of adult persons with intellectual disabilities are cared for by their families, remarkably little is known of the characteristics of their carers, the support services they receive and their unmet needs. A particular concern is whether or not carers have equitable access to services. METHOD: Information was gathered from service staff who knew best the person with the disability. A standard pro forma was used with a representative sample of over 1500 family carers in Northern Ireland (26% of the estimated population). RESULTS: Nearly half of the people were being cared for by both parents, but around one third lived with lone carers and 20% with another relative. These subgroups of carers varied significantly in their personal characteristics and in terms of the person for whom they cared. However, Regression Analyses identified that their relative's higher dependency in person care was the only common variable that was predictive of carers' access to support services. A possible measure of unmet need for various support services was derived. CONCLUSIONS: Services need to pay greater attention to the characteristics of family carers so as to overcome some of the present inequities in supports offered to them. Further areas for future research are identified.

Nursing inputs to special schools in N. Ireland.

Children attending special schools often have healthcare needs that require ongoing medical and nursing care. Two postal surveys were undertaken of 47 special schools in N. Ireland to determine the type of contact they had with nurses and the functions they fulfilled. Responses were received from 42 school principals and from the 11 Health and Social Service Trusts responsible for nursing services. It was found that nurses were based in nine of 42 schools while the remaining schools depended on a range of different visiting nurses. The nurses were involved in 'hands-on' tasks as well as giving advice and training to school personnel. Further research needs to define more closely the nursing needs of these pupils as well as evaluating the differential benefits of various nursing services to schools and how their inputs can be coordinated with those of other health professionals.

Experiences of staff in dealing with client sexuality in services for teenagers and adults with intellectual disability.

Previous studies have focused on staff attitudes to sexuality rather than their experience of dealing with sexual incidents. A self-completion questionnaire was devised in which seven scenarios were proposed relating to client sexuality (e.g. public masturbation and accusation of sexual abuse). Staff noted whether or not they had encountered this type of incident, and if so, how confident they felt (or would feel) in dealing with it, and whether or not they would enlist the help of colleagues. Questionnaires were sent to all statutory, voluntary and private service providers (including schools) within one community health and social services trust area in Northern Ireland, and 150 staff responded. Around two-thirds of staff reported having dealt with at least one of the seven incidents listed. Staff with previous experience of the incident listed, felt that they could deal with it more confidently in future, as did staff working in residential services rather than day services. The latter group of staff were more likely to enlist the help of colleagues than were residential staff. Nearly 50% of staff identified more training and clear policy guidelines as the two means of increasing their confidence in dealing with issues of client sexuality. These results highlight the need for staff training that spans agencies and results in common approaches to client sexuality. Suggestions for further research are noted.

Matching short break services for children with learning disabilities to family needs and preferences.

Short breaks or respite care is a much-valued service by families and the demand for it is likely to exceed supply. It is all the more imperative that the services provided are matched to the needs and preferences of families. A census was undertaken within one Health and Social Services Board in Northern Ireland of families who received short break services for their child with disabilities during a 12-month period. Information was also collected on pertinent child and family characteristics. This enabled profiles to be drawn up of the recipients of six types of short-term breaks: (1) hospital-based overnight care; (2) overnight stays in a residential home; (3) domiciliary service in the family home; (4) breaks provided in another family home; (5) residential holidays; and (6) breaks provided through leisure schemes organized after-school or during holidays. A second study entailed interviews with families who were resident in one area served by a Health and Social Service Trust regarding their usage and preferences for each type of service noted above. This too identified variations in parental preferences and usage. This information gathered should assist commissioners in developing cost-beneficial short break services although further research is needed to validate the possible predictors for each service.

Reactions of nurses and therapists in mainstream health services to contact with people who have learning disabilities.

Government policy in the United Kingdom is to make the National Health Service accessible to all citizens, including those who hitherto may have relied on specialist services. It is recognized that the attitudes of health professionals can be a major influence in making this happen. To date there has been a paucity of research studies involving nurses and therapists, two of the largest groupings of health care workers. The present study contrasted the reactions of nurses and therapists to their contact with people who have learning disabilities, with those of staff working in specialist services for this client group, and with students who are not involved in health services. Over 1000 respondents - mainly university students on undergraduate or post-graduate courses - completed a written questionnaire. Although nurses and therapists had significantly less contact with people who had learning disabilities during their work than did staff in specialist services, there were no differences in terms of contact in personal life. In both instances their contacts were higher than those reported for non-healthcare students. However both nurses and therapists were significantly less confident in working with a patient who had learning disabilities as opposed to one with physical disabilities. By contrast, willingness for social contacts did not vary across the four groups although respondents with previous personal contact were significantly more willing for this than those with no prior contact. The results confirm that the form of contact is a more salient variable on staff attitudes than contact per se. Hence, changed reactions are more likely to come about from successful contacts in a work rather than social environment. The implications are discussed for initial and post-qualifying training courses, especially for suitable placement experiences. Suggestions are made for future research that focuses on increasing the expertise and confidence of nurses and therapists in working with patients who have learning disabilities.

Staff communication with people with intellectual disabilities: the impact of a work-based training programme.

Previous studies have identified changes that front-line service staff could usefully make to enhance their communications and those of their clients who have intellectual disabilities. These were incorporated into a training programme delivered in the workplace that involved a self-selected group of 24 experienced staff working either in small-scale residential settings and day centres. Analysis of video-recordings made before and after training showed that although most clients had become more active communicators (particularly when they were engaged in shared activities with staff), significant changes in staff behaviours as a whole were not observed. However increased responsiveness from staff did correlate significantly with increases in the client's communication acts. In addition, qualitative reports from staff and tutors pinpointed specific changes that staff had made. The difficulties of evaluating changes in staff-client communications are discussed and four features for training staff in communication are identified as essential; namely, it should be work-based, client focused, mentor-guided, and effective strategies documented and shared.