H. M. J. van Schrojenstein Lantman-de Valk

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.

People with mild to moderate intellectual disability talking about their diabetes and how they manage.

BACKGROUND The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition. METHOD Seventeen people with mild to moderate ID who have diabetes were interviewed. A framework on illness perceptions having an influence on diabetes self-management was used as a basis for the interviews and for the qualitative analysis. RESULTS Diabetes is associated with feelings of loss with regard to food intake and choices, and with being controlled. Most respondents did not feel ill. Information about diabetes for people with ID is lacking, but they do have questions. Family members with diabetes often serve as a role model. Diabetes self-management is impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation. Communication between health professionals and people with ID about diabetes rarely takes place. CONCLUSIONS Developing diabetes information together with the people concerned is an important step towards engagement in self-management activities. At the same time, the professional staff in living arrangements should stimulate and support the development of self-management skills in people with diabetes, by providing opportunities to learn and develop. Therefore, the professional staff also need skills and information to be able to support people with ID in building the skills and confidence they need to lead active and fulfilling lives, despite having diabetes.

Falls in older persons with intellectual disabilities: fall rate, circumstances and consequences

BACKGROUND Falling is a common cause of injuries and reduced quality of life. Persons with intellectual disabilities (ID) are at increased risk for falls and related injuries. As the number of elderly persons with ID is growing rapidly, it is imperative to gain insight into the quantity of the problem of falling, the circumstances that precipitate falls and to better understand their aetiology in persons with ID. This is the first study to prospectively investigate fall rate, circumstances and fall consequences in older adults with mild to moderate ID. METHOD Eighty-two individuals with mild to moderate ID, 50 years and over [mean age 62.3 (SD = 7.6), 34 male], participated in this study, which was conducted at three service providers for persons with ID in the Netherlands. Falls were registered for 1 year with monthly fall registration calendars to determine the fall rate (mean number of falls per person per year). Information on fall circumstances and consequences was obtained from questionnaires completed by caregivers and study participants after each fall. RESULTS We determined that the fall rate in this sample was 1.00 fall per person per year. Thirty-seven participants reported at least one fall (range 1-6). Sex and age were not related to falls. Most falls occurred while walking (63.3%), outside (61.7%) and in familiar environments (88.9%). Importantly, 11.5% of falls resulted in severe injuries, approximately half of which were fractures. CONCLUSION The circumstances and consequences of falls in persons with ID are comparable to those of the general elderly population, but the rate is substantially higher. As such, appropriate fall prevention strategies must be developed for individuals with ID.

The use of contraception by women with intellectual disabilities

BACKGROUND Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals and relations with level of ID and age of the women concerned. METHODS The study group consisted of 234 women aged between 15 and 59 years and residing at a Dutch service provider for persons with ID. Data were obtained via the pharmacy database, attending physicians and individual medical files. RESULTS Nearly one half (48%, n = 112) of the 234 residential women used some method of contraception: 87 (78%) took pharmacological contraceptive methods, 23 (20%) underwent surgical contraception and 2 (2%) both. Main reasons for contraception were problems with menstruation, behaviour and/or prevention of pregnancy. Requests for contraception were initiated mainly by physicians and parents. Differences between users of different contraceptives with regard to age and level of ID were not statistically significant. CONCLUSIONS Further studies should focus on the development and implementation of adequate health promotion materials on this subject.

Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives

BACKGROUND A healthy lifestyle can prevent several health problems experienced by adults with intellectual disabilities (ID). For the development of effective and usable health promoting interventions for people with ID, the perspective of the intended audience should be taken into account. The aim of this qualitative study was to gain insight into the perspectives of people with mild to moderate ID on healthy living. METHOD Qualitative study. Five semi-structured focus groups were conducted with a total of 21 adults with mild to moderate ID in the Netherlands. Discussions focused on three main themes: (1) perceptions of own health, (2) what participants consider as healthy living and (3) factors experienced to be related to the ability to live healthily. Interviews were analysed thematically resulting in two main domains: (1) perceptions of what is healthy and unhealthy and (2) factors that participants experience to be related to their ability to live healthily. RESULTS For participants, healthy living entails more than healthy food and exercising: feeling healthy, happiness and level of independence are perceived as important as well. Factors experienced to relate to their ability to live healthily were (a lack of) motivation, support from others and environmental factors such as available health education, (a lack of) facilities and a(n) (dis)advantageous location of work or residence. CONCLUSIONS This qualitative study shows that adults with mild to moderate ID have a good understanding of what being healthy and living healthily constitute. As they face several difficulties in their attempts to live healthily, existing health promotion programmes for people with ID must be tailored to individual preferences and motivations and adapted for individual physical disabilities. Moreover, because of their dependency on others, tailoring should also be focused on the resources and hindering factors in their physical and social environment.

Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: a cross-sectional study of medical records and care plans

BACKGROUND People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. METHOD We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. RESULTS The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. CONCLUSIONS The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.

Cognitive shifting and externalising problem behaviour in intellectual disability and autism spectrum disorder

BACKGROUND Behavioural problems are frequently reported in residential care for people with an intellectual disability (ID) in particular when they are additionally diagnosed with autism spectrum disorder (ASD). There are indications that impairment in cognitive shifting may be associated with problem behaviour. The objectives of this study were (1) to examine the relationship of cognitive shifting and severity of ASD symptoms with externalising problem behaviour in individuals with ID, with and without ASD, and (2) to examine whether a diagnosis based on shifting impairment is more predictive of externalising problem behaviour than an ASD diagnosis. METHOD Participants consisted of adolescents and young adults with mild ID, with and without ASD (n = 41). Pearson intercorrelations were computed to explore the relationship between shifting impairment and severity of ASD symptoms on the one hand and ratings of externalising problem behaviour on the other hand. t-Tests were performed to analyse differences in externalising problem behaviour. RESULTS Unlike ASD symptom severity, shifting scores were found to be associated with externalising problem behaviour, but only if shifting was measured using rating scales and not when using neuropsychological tasks. Externalising problem behaviour scores significantly differed when groups were classified according to shifting impairment (impaired vs. non-impaired) but not when they were classified according to ID and ASD diagnoses. CONCLUSIONS It is proposed to use a cognition-based approach when analysing problem behaviour, thus concentrating not so much on ID and ASD diagnosis and their corresponding symptoms, but rather placing the focus on cognitive symptoms.

Shifting impairment and aggression in intellectual disability and Autism Spectrum Disorder

Aggressive behaviour is a major problem in individuals with an intellectual disability (ID) as well as in individuals with an Autism Spectrum Disorder (ASD). There are indications that suggest a link between cognitive shifting and aggression. In this study, reports of aggressive incidents of adolescents and young adults with different clinical diagnoses (ID, ID+ASD, ASD) were collected during 1 year, using the Staff Observation Aggression Scale-Revised. Whether they were diagnosed with ID, ASD or both; individuals who displayed aggression were found to face more cognitive shifting difficulties than non-aggressive individuals, while no significant differences were found on severity of ASD symptoms. Study results support the assumption that a cognition-based model for aggression may be more adequate than a diagnose-based model.

Executive functioning in individuals with intellectual disabilities and autism spectrum disorders

BACKGROUND Executive functioning (EF) is important for adequate behavioural functioning and crucial for explaining symptoms of autism spectrum disorders (ASD) in individuals with normal intelligence, but is scarcely studied in individuals with ASD and intellectual disabilities (ID). We therefore study EF in an ID population by comparing performances on three frequently studied executive functions (shifting, inhibition and updating) between individuals with ASD and individuals without ASD. When studying ID populations, one should be aware of Spearmans Law of Diminishing Returns (SLODR), as it questions the possibility of measuring separate cognitive functions in ID populations. METHODS Six EF tasks were administered to 50 individuals with mild to borderline ID, of which half was diagnosed with ASD. In order to investigate the distinctness of the three executive functions in this ID sample, the results on the six EF tasks were subjected to principal components analysis (PCA). Subsequently, a multivariate analysis of variance (MANOVA) was performed to assess differences between the ASD and non-ASD group on shifting, inhibition and updating. RESULTS The PCA revealed the hypothesised EF trichotomy. MANOVA analysis showed no significant group differences on EF-performance. CONCLUSIONS Three separate executive functions were measured in this ID population, but despite much evidence that individuals with ASD display more behavioural problems and the proven relevance of EF in behavioural functioning, no significant group difference was found on shifting, inhibition or updating. After this first effort to achieve more insight into EF of individuals with ASD and ID the relation between behavioural problems and EF will require further study.

Speech difficulties and poor speech intelligibility in adults with Down syndrome: a review of the literature

Background: This review gives an overview of studies on speech difficulties in adults with Down syndrome to identify causes and major determinants of poor speech intelligibility for this group and to suggest areas requiring further research. Material and Methods: Exactly 39 published articles were selected by using the following MEsH search terms: speech disorders, articulatory apraxia, phonological impairment, articulation disorders, short-term memory, speech articulation disorders, and speech intelligibility. Articles were grouped for analysis based on themes related to underlying causes of speech difficul ties and the diagnosis and treatment of speech difficulties. Future research needs are also presented. Results: Speech problems in adults with Down syndrome are not clearly defined. There is no specific data on underlying mech anisms that negatively impact on speech and there is no systematic assessment procedure available for evaluating the speech of adults with Down syndrome. Few studies have investigated treatment possibilities for speech disorders in adults and future research is needed into speech difficulties in adults with Down syndrome. Conclusions: Research is required into therapeutic programs to improve the speech of adults with Down syndrome. One clinical consideration as to why this research is lacking might be that the speech problem is seen as a characteristic of the Down syndrome itself rather than being seen as the result of distinct underlying deficits that may be sensitive to speech therapy. To aid therapeutic program development, longitudinal studies of adolescents and adults with Down syndrome are required. Special attention could be given to investigating oral-motor characteristics and apraxia of speech.