Melanie Chapman

The misdiagnosis of epilepsy in people with intellectual disabilities: A systematic review

PURPOSE Epilepsy is common in people with intellectual disabilities. Epilepsy can be difficult to diagnose and may be misdiagnosed in around 25% of cases. A systematic review was conducted to explore: (i) How common the misdiagnosis of epilepsy is amongst people with intellectual disabilities. (ii) Reasons for misdiagnosis of epilepsy. (iii) Implications of misdiagnosis. (iv) Improving diagnosis. METHODS Primary studies and systematic reviews published in the English language between 1998 and 2008 were identified from electronic databases, experts, the Internet, grey literature, and citation tracking. Included studies were critically appraised by team members using the appraisal tools produced by the Critical Appraisal Skills Programme (CASP) at the Public Health Resource Unit, Oxford. RESULTS Eight studies were included in the review and critically appraised: six cohort studies and two case studies. Where data was provided in the cohort studies between 32% and 38% of people with intellectual disabilities were diagnosed as not having epilepsy or as having nonepileptic events. The main reason for misdiagnosis was the misinterpretation of behavioural, physiological, syndrome related, medication related or psychological events by parents, paid carers and health professionals. CONCLUSIONS Those working in epilepsy and intellectual disability services and families must be made more aware of the possibility of misdiagnosis. Future research is needed about the misdiagnosis of epilepsy amongst people with intellectual disabilities and carer knowledge.

Fighting fit? An evaluation of health practitioner input to improve healthy living and reduce obesity for adults with learning disabilities

People with learning disabilities are at high risk of obesity and consequent health risks. This study aimed to (1) describe levels of obesity for adults supported by learning disability services, and to (2) evaluate the effectiveness of health practitioner input with individuals with learning disabilities. Body mass index (BMI) was measured at 6 month intervals and change in BMI over time was compared between a non-input group and a group receiving practitioner input to improve healthy living. Initially 35 percent of the non-input sample was classified as clinically obese. Mean BMI increased over time for the non-input group at first, but decreased for the group that received practitioner input. The differences in weight change between the two groups reached statistical significance with a greater weight reduction in the input group. Implications for service provision are discussed.

Healthy lifestyles for adults with intellectual disability: Knowledge, barriers, and facilitators

Abstract Background People with intellectual disability (ID) are more likely to have health problems than people without disability. Little previous research has investigated health from the perspective of the people with ID themselves. We aimed to focus on what people with ID understand being healthy to mean and what their experiences are of healthy lifestyles. Method Semistructured interviews were conducted with 13 adults with ID to ask them about their health and healthy lifestyles. Data were analysed thematically. Results Participants demonstrated understanding of what it means to be healthy, have a healthy diet, the dangers of substance misuse, and the benefits of exercise. Participants demonstrated some knowledge about rationales for engaging in healthy behaviours. The idea of moderation was raised, along with barriers and facilitators to engaging in a healthy lifestyle. Conclusions Findings suggest that people with ID demonstrate some understanding of what constitutes being healthy and are aware of healthy lifestyles, the consequences of unhealthy behaviours, and of the need for moderation.

Problems of Evidence Based Practice in Community Based Services

An emerging orthodoxy regarding the definition and role of evidence based practice is identified and subjected to a constructive critique with particular reference to social and community health services for people who are intellectually (learning) disabled. It is argued that the orthodox approach to evidence based practice falters at every step, from the production of evidence to its use by practitioners. An alternative approach is suggested which distinguishes between macro, meso and micro types of evidence, and integrates information from these sources through the construction of practical realist theories that inform service provision through which the theories are also tested. A practical example based on current work on self-injury is provided.

The use of social media and people with intellectual disability: A systematic review and thematic analysis

ABSTRACT Background In this paper we present a systematic review of the evidence on the use of social media by people with intellectual disability. Method Ten primary studies published in the English language between January 2000 and June 2014 were identified from electronic database searches (CINAHL, PsychInfo, PubMed, Web of Knowledge, and Scopus), correspondence with experts, and citation tracking. Results Nine themes were identified through thematic analysis of the texts: “safety and safeguarding,” “social identity,” “level of usage,” “support,” “relationships,” “happiness and enjoyment,” “communication and literacy skills,” “cyber-language and cyber-etiquette,” and “accessibility/design”. Conclusion Examination of these themes revealed that some people with intellectual disability are having positive experiences using social media in terms of friendships, development of social identity and self-esteem, and enjoyment. However, barriers that stop people with intellectual disability from successfully accessing social media were identified as being safeguarding concerns, difficulties caused by literacy and communication skills, cyber-language, cyber-etiquette, and accessibility (including lack of appropriate equipment).

Following up fighting fit: the long-term impact of health practitioner input on obesity and BMI amongst adults with intellectual disabilities.

This article presents findings on the long-term impact of health practitioner input to reduce obesity amongst adults with intellectual disabilities. Body mass index (BMI) was measured for an input group (N = 33) and a comparison group (N = 40) 6 years after the input group first received input. Data on BMI were collected at baseline, 6 months, 1 year and 6 years. Mean BMI for the input group reduced steadily over 6 years. Mean BMI in the non-input group rose initially, stabilized and then decreased (although remaining higher than at baseline). The input group demonstrated improvements in obesity levels and lost more weight than the non-input group. However, the differences between groups did not reach statistical significance. This and the improvements in BMI within the non-input group may be due to the relatively small sample size, effect size and the impact of other local initiatives.

The prevalence of autistic spectrum disorders in people using a community learning disabilities service

The prevalence of autistic spectrum disorders in people using a large urban learning disabilities service was examined using a questionnaire-based method. Both statutory and independent service providers were surveyed and a total of 174 people with either a confirmed or a suspected autistic spectrum disorder were identified. Current and historical factors are discussed which suggest that the resulting estimation that 10 percent of service users have an autistic spectrum disorder represents the lowest estimate of prevalence in this population. The implications for service provision and development are discussed.

The Leopard Has Changed Its Spots: Experiences of Different Ways in Which Staff Support People with Learning Disabilities

This paper contrasts the personal experiences of a man with learning disabilities and autism with staff in two different settings: a long-stay institution for people with learning disabilities, and the community. These experiences highlight some of the potential personal, professional and ethical conflicts facing staff working in learning disability services.