Public Attitudes towards People with Intellectual Disabilities: A Qualitative Comparison of White British & South Asian People

Background National and international polices promote the acceptance, integration and inclusion of people with intellectual disabilities into mainstream society. However, there is little systematic research into general population attitudes towards people with intellectual disabilities, and even less research, which considers the impact of culture on attitudes. The aim of this study was to explore how young people from White British and South Asian backgrounds differ in their attitudes towards people with intellectual disabilities and above all, how they arrive at their beliefs. Materials and Method A qualitative design utilizing focus groups and individual interviews with White British and South Asian adolescents aged 16–19 years (N = 61) was employed. Questionnaire data were collected to compare this sample to findings from a larger study run concurrently (Attitudes to people with intellectual disabilities: a cross cultural study. Thesis, University College London). Interview and focus group data were analysed using thematic analysis. Results Thematic analysis yielded five themes and pointed to widespread confusion about the concept of ‘intellectual disability’, not helped by the continuing invisibility of people with intellectual disabilities in the media. Participants expressed many positive beliefs, yet closer analysis revealed that underlying these may be more ambivalent or even hostile attitudes. Key differences between the two cultural groups are discussed. Conclusions The findings highlight the need for raising public awareness and the importance of culturally sensitive support.     

Attribution Theory Applied to Helping Behaviour Towards People with Intellectual Disabilities Who Challenge

Introduction Attribution theory posits that helping behaviour is determined in part by the potential helper’s attributions and emotions regarding the behaviour that requires help. Specifically, helping is considered to be more likely if stability is perceived as low, generating optimism for change, and if controllability is perceived as low, engendering high levels of sympathy and low levels of anger. Method We conducted a systematic literature search to identify studies that have tested these predictions in relation to carers’ propensity to help people with intellectual disabilities who display challenging behaviour. Results The literature is inconsistent and provides at best partial support for the theory. This situation differs from that seen in the general population, where the predictions of attribution theory are broadly supported. Discussion We consider three potential explanations for this discrepancy: the reliability of the largely vignette‐based methodology, the fact that most studies fail to define ‘helping’ explicitly and the possibility that attribution theory might apply only to low‐frequency behaviours.     

Health in People with Intellectual Disabilities: Current Knowledge and Gaps in Knowledge

Background The health needs of people with intellectual disabilities have recently received increasing attention. Method Based on a review of the 2003 literature, this paper presents an overview of our knowledge on physical, mental and social well‐being in this group. Results Physical well‐being is threatened by handicap‐related conditions, syndrome‐related health problems and lifestyle characteristics. Conclusion Gaps in knowledge include insufficient evidence on health disparities, the lack of comparability of data on the prevalence of ill heath, lack of expertise in relation to communication problems and the fact that all knowledge is based on research in developed countries, while people with intellectual disabilities in developing countries face the same or even greater health problems. Recommendations concerning evidence, education and empowerment are formulated.     

Capacity of People with Intellectual Disabilities to Consent to Take Part in a Research Study

Background Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated. Materials and methods A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used:

• • Control (n = 34) – consent information was presented followed by the questionnaire.
• • Section (n = 34) – consent information was broken into sections and the appropriate questions were asked following each section.
• • Photograph (n = 34) – consent information was accompanied by six colour photographs, followed by the questionnaire.

Participants also completed measures of memory ability, verbal ability and non‐verbal problem‐solving ability. Results Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent. Conclusions The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.     

智力残疾人康复需求与康复服务发展状况Logistic回归分析研究

目的探讨智力残疾人的康复需求特点与康复服务发展状况及其影响因素。方法以250654名智力残疾人省级康复需求与康复服务实名制数据为样本数据,统计分析智力残疾人的康复需求特点和康复服务发展状况,Logistic回归分析其相关因素。结果在智力残疾人的康复需求报告中,报告率从高到低依次为护理47.8%、药物37.2%、功能训练26.1%、辅助器具19.8%和手术1.3%。智力残疾人报告获得的康复服务从高到低依次为护理43.5%、药物29.3%、功能训练27.2%、辅助器具19.6%和手术0.8%。根据Logistic回归模型发现,年龄和残疾等级对智力残疾人康复需求的报告与获得康复服务的概率存在显著影响(P<0.001)。结论智力残疾人康复需求主要表现为护理、药物和康复训练。接受的康复服务与康复需求具有相同的结构。由于智力残疾人功能的复杂性,重度或极重度残疾人更强调护理照料服务,轻度残疾人则需要功能训练。发展针对智力残疾人的康复服务,应该根据其智力功能和社会适应行为特点,开发康复服务项目,提供个别化的精准康复服务。     

Issues of Informed Consent in Conducting Medical Research Involving People with Intellectual Disability

Background People with severe intellectual disability are considered vulnerable to exploitation in research. Discovery of exploitative practices in recent history has motivated the development of guidelines for informed consent and proxy decision‐making procedures when involving these individuals in research. Methods Issues for determining capability to provide informed consent and the proxy decision process are reviewed according to the literature, current ethics guidelines and recent legislature in Victoria, Australia. Results The complex process of involving in research people with severe intellectual disability who are particularly vulnerable by virtue of their institutionalized residential status is discussed within the context of a recent project into examining potential nutritional determinants of Pica behaviour (i.e. the eating of inedible items). Conclusions This example serves to highlight the role of legislation, various government bodies and researchers in balancing principles of protection of vulnerable groups and rights to self‐determination.     

Representation of People with Intellectual Disabilities in a British Newspaper in 1983 and 2001

Background Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. Materials and Methods Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983. Results There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More ‘people‐first’ terminology was now used except in respect of people with autism. Articles systematically under‐represented complexity and severity of need. Conclusions Policy and service changes may have contributed to the decline of medically‐ and child‐related representations within non‐specific intellectual disabilities. The continued over‐representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.     

Readiness for Cognitive Therapy in People with Intellectual Disabilities

Aims Cognitive therapies are increasingly being offered by clinical psychologists to people with intellectual disabilities. This paper reviews some of the factors that influence people's readiness to engage in cognitive therapy. Literature review Limited verbal ability, psychological‐mindedness (particularly in relation to the understanding of emotions and the mediating role of cognitions), and self‐efficacy, are all likely to present significant barriers. There may also be motivational barriers to treatment, including the functionality of some psychological presentations, maladaptive beliefs promoting resistance to change, the intellectually challenging nature of cognitive therapy, and external factors such as inappropriate settings. Engagement with therapy can be promoted by involving carers to support the therapy, but carers may themselves display a range of limitations of ability and motivation similar to those displayed by clients, which need to be recognized, and where possible addressed, in order for their involvement to be effective. Recommendations If barriers to treatment are recognized, significant steps can be taken to increase accessibility. In addition to simplifying the delivery of therapy, there is also scope to simplify the model; this point is illustrated by case examples, and some principles for formalizing modifications to standard procedures are suggested. As barriers to treatment can often be surmounted, a decision whether or not to offer cognitive therapy should be derived from a comprehensive formulation, and should never be based solely on a client's performance on tests of cognitive ability.