Autonomy in relation to health among people with intellectual disability: a literature review

Background Since the 1990s, individualisation, participation, normalisation and inclusion have been the main principles of care for people with intellectual disability (ID). Autonomy has become an important issue for these people. This review of the literature tried to answer the question: how do people with ID exercise autonomy in relation to health? Method Searches in Cochrane, Medline and PsycINFO were based on the following aspects of autonomy: self‐determination, independence, self‐regulation and self‐realisation. Results Thirty‐nine of 791 articles met our criteria, including 14 on self‐determination, seven on independence, 15 on self‐regulation and three on self‐realisation. Conclusions In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature.     

Prevalence and incidence of health problems in people with intellectual disability

The objective of this study was to determine the prevalence and incidence of the most frequent chronic health problems in relation to age in people with intellectual disabilities living in residential facilities in the Netherlands. A prospective cohort study was done with four data collections, each with an interval of one year. Data were collected by means of questionnaires which were completed by each person's physician. Striking results included the reported high prevalence and incidence of visual and hearing impairment, which was even more pronounced in people with Down's syndrome than in people with intellectual disability resulting from other causes. Gastrointestinal problems also appeared to have high incidence rates. Dementia was frequently reported in people with Down's syndrome aged 40 years and older. The results reflect the need for a more predictive policy which can anticipate health problems in people with intellectual disability.     

People with intellectual disability and their health problems: a review of comparative studies

Background The transition of people with intellectual disability (ID) from care institutions to the community – according to Western policy – results in a shift of responsibility towards primary health care services. In order to provide optimal care to people with ID living in the community, general practitioners need to be aware of the specific health problems of this patient category. The aim of this paper is to present an overview of recent studies on the specific health problems of people with ID, in particular on health problems of people with ID in the community, compared to those of the general population. Method To reliably compare health problems of individuals with and without ID, this review is limited to comparative research using a control group of individuals without ID. The focus of the review concentrates on international literature, published between 1995 and 2002. Results Most comparative research among people with ID presents higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures. These health problems are specific for people with ID, both in general and living in the community in particular. Conclusions there are only few studies focusing on health problems in people with ID in which a control group of individuals without ID is included. Most comparative studies on health problems in people with ID are based on comparison with reported prevalence rates of general health surveys.     

Systematic review and meta-analysis of primary healthcare interventions on health actions in people with intellectual disability

Background People with intellectual disability have substantially more unidentified health needs than the general population. We systematically reviewed the effectiveness of primary healthcare interventions intended to increase health actions for people with intellectual disability.

Methods Electronic databases were searched on 16 September 2014. Randomised and non-randomised studies with a concurrent control group were identified. Study quality was assessed and, where possible, meta-analysis was undertaken.

Results Five studies (3 randomised controlled trials, 1 matched cohort study, and 1 cohort study) with a total of 1,570 participants were included. General practitioner-led health checks were the most effective intervention and resulted in significantly more clinical activities, such as vision testing (risk ratio [RR]?=?3.3, 95% CI [2.3, 4.7]) and hepatitis B vaccinations (RR?=?2.4, 95% CI [1.7, 3.4]).

Conclusions Health checks were the only intervention to significantly increase short-term health promotion and disease prevention activity. The long-term effect of any intervention remains unknown.     

Ethnic factors in mental health service utilisation among people with intellectual disability in high-income countries: systematic review

Background An emerging literature suggests that ethnic and cultural factors influence service utilisation among people with intellectual disability (ID), but this has not previously been reviewed. Aims To investigate possible ethnic variation in uptake of mental health services in children, adolescents and adults with ID in high‐income countries. Method A systematic review using main databases of studies that consider ethnic influences on mental health utilisation of people with ID. Methodological quality of studies was assessed. Results Nine studies that reached selection criteria were identified. Six studies that compared two or more ethnic groups found a variation in levels of mental health service utilisation. The most consistent finding was that South Asian children, adolescents and adults with ID in the UK had lower use of mental health services than White British comparison groups. Conclusion Ethnic influences on mental health service utilisation were identified. Understanding their significance and potential negative consequences requires further investigation.     

Barriers to sexual health provision for people with intellectual disability: A disability service provider and clinician perspective

Abstract

Background Sexual health remains one of the most overlooked areas of life for people with intellectual disability. In recent years there has been an increasing expectation that this issue will be addressed by disability service providers. In this paper we examine the barriers to sexual health provision of people with intellectual disability as experienced by disability service providers and clinicians.

Method This research uses a constructionist grounded theory approach. It was conducted in 2 phases using semistructured qualitative interviews to collect data from disability service managers and clinicians working with people with intellectual disability in New South Wales, Australia.

Findings and Discussion Key themes within the interviews – including funding shortages and a lack of policy guidelines – were identified as significant administrative barriers to sexual health provision. Myths about the sexual health of people with intellectual disability, family attitudes, and lack of staff training were also identified as barriers.     

Lifestyle and health behaviours of adults with an intellectual disability

Background There is currently no published research in Ireland on the health behaviours of adults with an intellectual disability (ID). With an increasing age profile and similar patterns of morbidity to the general population, the ID population would benefit from baseline data from which to establish risk factors. Methods A questionnaire survey was carried out with 157 carers of people with an ID in the west of Ireland. Results The results of this survey were compared with results of a health survey for the general population in the same region. The present survey found that 68% of the ID sample was overweight or obese. Levels of smoking (2.6%) and regular alcohol consumption (10.3%) were relatively low in comparison with the general population. However, participation in exercise and adherence to a healthy diet were poor. The level of resident choice and decision‐making did not have any relationship to health behaviours nor did residential setting. Finally, there were no gender differences in health and lifestyle profiles. Conclusion The results of this study have important implications for health promotion interventions for people with an ID.     

Community participation of people with an intellectual disability: a review of empirical findings

Study design A systematic review of the literature. Objectives To investigate community participation of persons with an intellectual disability (ID) as reported in empirical research studies. Method A systematic literature search was conducted for the period of 1996–2006 on PubMed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the initially identified studies using predefined content and methodological selection criteria. Included domains of community participation were: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, civic and social life. Results Of 2936 initial hits, 23 quantitative studies eventually met the selection criteria and were included in the study. Only two studies are based on a theoretical framework. Research instruments were various and were most often ad hoc and not validated. The average number of persons in the social network of people with ID appears to be 3.1, one of them usually being a professional service staff member. People with ID are 3–4 times less employed than non‐disabled peers; they are less likely to be employed competitively and are more likely to work in sheltered workshops or in segregated settings than those with other disabilities. People with ID are less likely to be involved in community groups, and leisure activities are mostly solitary and passive in nature. Most of the people with ID had been accompanied in an activity by training/therapeutic staff. Conclusion It can be concluded that on the basis of empirical evidence, within the time frame of this literature search, little is known about community participation of people with ID. Many researchers did not clearly define community participation and were concerned with limited areas of community participation; research is seldom based on a theoretical framework. Most studies focus on people with mild ID, and there are few reports of the subjects' sample. However, one conclusion can consistently be drawn from the review: people with ID living in community settings participate more than people living in a segregated setting, but their participation level is still much lower than non‐disabled and other disability groups.     

The oral health of people with intellectual disability participating in the UK Special Olympics

Background Research on the dental health of people with intellectual disability has consistently reported more untreated dental disease, more extractions and fewer fillings than in the general population. This paper describes the oral health of participants at the 2005 Glasgow Special Olympics (SO), relating this to the general population studied in the 1998 UK Adult Dental Health Survey (ADHS) and to participants' age and region of residence. Methods Consenting SO participants were offered oral examinations which followed the standardized SO protocol plus an innovative soft tissue examination. Urgency of any treatment required was noted and reported to participants and carers. Three measures of good dental health – having 21 or more natural teeth, absence of fillings and having no obvious untreated decay – were compared across age groups, regions and with the general population. Logistic regression was used to control for age differences between regions. Results In total, 1021 oral examinations were completed. Older SO participants were more likely to have fewer than 21 teeth and to have fillings, untreated decay, gum inflammation and heavy plaque levels. In all, 28% of SO participants had 21 or more teeth, no fillings and no obvious decay. Those from the north, midlands and south regions of England had significantly more chance of good dental health so defined compared with participants from Scotland [ORs 1.67 (1.09, 2.67), 1.69 (1.12, 2.54), 1.99 (1.26, 3.16), respectively]. Compared with the general population surveyed in the 1998 ADHS study, SO participants were more likely to be free from fillings and obvious untreated decay, but fewer had 21 or more natural teeth among older age groups. Nine per cent were found to have soft tissue problems, and one in four of these required follow‐up. Gum inflammation was common. Overall, 5% of participants were judged to require urgent treatment for dental or soft tissue problems and 40% to require non‐urgent treatment. This rose to 9% and 66% respectively among those aged 35 years and over. Discussion The low prevalence of untreated decay and fillings among SO participants compared with the general population may be due to their being well supported by family and carers. The study identifies the vulnerability of the older participants to dental problems, and this may indicate greater difficulty maintaining surveillance as individuals age or informal carers become less able or available. Regional variations are similar to those found in the general population. The implications for the organization of care for this group are discussed.     

Intravenous sedation for dental patients with intellectual disability

Background The poor quality of oral health care for people with intellectual disability (ID) has been recognized, and the strong fears about dental treatment suggested as a major reason for disturbances of visits to dentists by such patients. Intravenous sedation is a useful method for relieving the anxiety and fear of such patients about dental treatment, and is frequently essential for ID patients undergoing dental treatment. However, decision regarding the dose of sedative required to be administered for an adequate level of sedation is difficult because the effect of sedation cannot be adequately assessed in patients with severe ID. As an appropriate sedative dose for dental patients with ID has not been fully established, we investigated sedative doses required and the effect of sedation in patients with ID, compared with other dental patients. Methods We reviewed the anaesthetic records of dental patients with ID (73 cases) and other dental patients (19 cases) aged between 20 and 29 years who had undergone intravenous sedation with midazolam and propofol in Okayama University Dental Hospital, from January 2000 to December 2000. Intravenous sedation was induced with a bolus intravenous administration of midazolam (2–3 mg) and maintained with a continuous infusion of propofol. The dose of propofol was titrated to achieve an adequate level of sedation: asleep but responding to painful stimulation. The efficacy of sedation, the required doses of propofol, and the wake‐up times were investigated for all subjects. The efficacy of sedation was evaluated by judging whether the patient became cooperative and allowed the dental treatment to be carried out or not. The complications induced by intravenous sedation were also evaluated in each subject. Differences in variables between subjects with ID and other subjects were analysed using the Mann–Whitney U‐test. Results Intravenous sedation was effective for dental treatment in all subjects with or without ID. The required dose of propofol in subjects with ID was 4.74 mg/kg/h (2.63–10.33 mg/kg/h), significantly higher than that required for other subjects (3.31, 1.72–4.80 mg/kg/h). Wake‐up times of subjects with ID were similar to those of the other subjects. Severe complications were not seen during or after intravenous sedation. Conclusion The results of this study show that intravenous sedation is a useful method for dental patients with ID as well as for other dental patients, but indicate that dental patients with ID need higher doses of sedative to obtain an adequate level of sedation.     

Mental health problems in children with intellectual disability: use of the Strengths and Difficulties Questionnaire

Background The assessment of mental health problems in children with intellectual disability (ID) mostly occurs by filling out long questionnaires that are not always validated for children without ID. The aim of this study is to assess the differences in mental health problems between children with ID and without ID, using a short questionnaire, the Strengths and Difficulties Questionnaire (SDQ). Methods We studied 260 children (6–12 years) selected from special education schools for trainable children (response: 57%). Parents completed the extended Dutch version of the SDQ, questions on background characteristics and on the care provided. A non‐ID control group of 707 children (response: 87%) was included to compare mental health problems. Results In total, 60.9% of children with ID had an elevated score on the SDQ, compared with 9.8% of children without ID. Only 45% of the children with ID and an elevated SDQ score had visited a healthcare professional for these problems in the last 6 months. Discussion The SDQ or an adapted version could contribute to the early identification of mental health problems in children with ID. Further research is needed to confirm the validity of the SDQ when used in a sample of children with ID.     

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

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).