Processes and effects of solution-focused brief therapy in people with intellectual disabilities: a controlled study.

BACKGROUND: Solution-Focused Brief Therapy (SFBT) is a form of behaviour therapy that focuses on evoking desired behaviour rather than on diminishing existing problem behaviour. SFBT has a number of advantages that makes it attractive for use with people who have intellectual disabilities (ID). These advantages include: focus on empowerment for the person, unique intervention strategies for each person based on their particular skills, and recognition of the expert status of the individual identified as the patient resulting in a sense of self-efficacy. METHODS: To investigate the effects of SFBT, we conducted a controlled pre- and post-test and follow-up study with 20 people with mild ID (MID) receiving SFBT and 18 people with MID receiving care as usual (CAU). We expected that SFBT could help people with MID with (1) reaching treatment goals; (2) improving quality of life (i.e. psychological and social functioning); (3) reducing maladaptive behaviour; and (4) increasing resilience (autonomy and social optimism). RESULTS: Two of the 20 clients terminated SFBT prematurely. Most clients receiving SFBT (13 of 18 clients) showed clinically relevant progressions (more than two points on a 1 to 10 scale) towards their treatment goals after SFBT and at follow-up, an additional client showed clinically relevant progress (total of 14 of 18 clients). Directly after therapy, the SFBT group performed statistically significantly better than the CAU group on psychological functioning, social functioning, maladaptive behaviour, autonomy and social optimism. The effect sizes of these improvements were medium to large. At 6-week follow-up, the improvements in psychological functioning, social functioning and maladaptive behaviour in the treatment group were still statistically significant compared with CAU, with medium to large effect sizes. CONCLUSIONS: Although the study had limitations because of the short follow-up period and the non-random selection of participants, the statistically significant differences between the SFBT and CAU groups and the medium to large effect sizes, indicate the potential effectiveness of SFBT for people with MID.

Aging in Rett syndrome: a longitudinal study.

Little is known about the aging process of people with specific syndromes, like Rett syndrome (RTT). Recognition of the clinical and behavioral characteristics of the adult RTT is needed in order to improve future management of the RTT girl and counseling of parents. In association with the Dutch RTT parent association, a 5-year longitudinal study was carried out. The study population consisted of 53 adult women with a clinical diagnosis of RTT. Postal questionnaires were sent, including demographic features, skills, physical and psychiatric morbidity. At the time of the second measurement seven women had died. In 2012, 80% of the questionnaires (37/46) were returned. Mean age of the women was 31.4 years. Molecular confirmation was possible for 83% of the women for whom analyses were carried out. The adult RTT woman has a more or less stable condition. The general disorder profile is that of a slow on-going deterioration of gross motor functioning in contrast to a better preserved cognitive functioning, less autonomic and epileptic features and good general health. This is the first longitudinal cohort study about aging in RTT. Continuing longitudinal studies are needed to gain more insight into the aging process in RTT.

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.

Sleep disturbances and behavioural problems in adults with Prader-Willi syndrome.

BACKGROUND: Individuals with Prader-Willi syndrome (PWS) are at risk of sleep disturbances, such as excessive daytime sleepiness (EDS) and sleep apnoea, and behavioural problems. Sleep disturbances and their relationship with other variables had not been researched extensively in adults with PWS. METHOD: Sleep disturbances and behavioural problems were investigated in adults with genetically confirmed PWS using standardised questionnaires. Results of adults with paternal deletion (n=45) were compared with those of adults with maternal uniparental disomy (n=33). RESULTS: Eleven adults with PWS (i.e. 15%) had a current sleep problem, mostly night waking problems. Twenty-six adults with PWS (i.e. 33%) suffered from severe EDS. No differences in prevalence of sleep disturbances between genetic subtypes were found. Seventeen adults with deletion (i.e. 38%) and 17 adults with maternal uniparental disomy (i.e. 52%) had behavioural problems. No significant relationships were found between sleep disturbances and behavioural problems. CONCLUSIONS: In adults with PWS, EDS is the most common type of sleep disturbance. Men and individuals with relative high body mass index are at increased risk for EDS. More research, aimed at developing a suitable screening instrument for sleep apnoea in adults with PWS, is necessary. Clinical implications of the findings are discussed.

Cardiac diseases in people with intellectual disability.

BACKGROUND: In people with ID there is more morbidity than in the general population, including cardiac diseases. Dutch figures on this subject are scarce. METHODS: Descriptive study of the prevalence of cardiac diseases in 436 residential clients in Echt, the Netherlands, and comparisons between men and women, age groups, and level and aetiology of ID, were carried out. RESULTS: It was found that the total prevalence of cardiac diseases was 14%, with a higher prevalence among women, the elderly, and people with mild/moderate ID. CONCLUSIONS: The prevalence of cardiac diseases in residential clients is substantial. With the increasing number of ageing people with ID and people with ID living more independently in community-integrated residences, it is expected that the morbidity and mortality from cardiac diseases will increase further.

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.

Care dependence and activities of daily living in relation to ageing: results of a longitudinal study.

From 1990 to 1993, the University of Limburg and the Pepijn Centre, the Netherlands, have performed a prospective cohort study on ageing and intellectual disability. The key questions of the study were: "To what degree do the level of care dependence and activities of daily living (ADL) differ between age groups, and to what degree do these skills change during the study period (3 years)? Are the changes age related?'. Looking at the changes in time, the results show that the level of care dependence did not change substantially in the sample of 1602 residents of Dutch facilities for people with intellectual disability. Only the oldest residents (70+ years) showed a significant decline in independence. The results also show that the skills of young people with Down's syndrome (< 40 years) did not change substantially, whereas older people with Down's syndrome (40+ years) showed a substantial decrease in ADL-skills. The ADL-skills of the residents with other aetiological diagnoses younger than 60 years of age did not change substantially, while the older residents (60-69 and 70+ years) showed a significant decrease in ADL-functions. The trend between changes in ADL and age in both aetiological groups was statistically significant. Attention is paid to the implications of these findings in the discussion.

Care dependence and individual care provision.

For policy purposes as well as for the provision of individual care, it is relevant to known which individual characteristics have impact upon the level of care dependence. For purposes of individual care provision, characteristics which can be influenced and which also have an important impact upon the care dependence are of interest. This study showed that the profoundly mentally handicapped are almost all totally dependent upon care, and therefore additional information about individual characteristics is superfluous. The results of logistic regression analyses showed a statistically significant and important impact of ADL-functions. Exactly which other characteristics are relevant to consider depends upon the level of care dependence and the level of mental handicap.

[Drug use by mentally handicapped persons in institutions and family-replacing residential facilities]. / Medicijngebruik door verstandelijk gehandicapten in instituten en gezinsvervangende tehuizen.

OBJECTIVE: Description of use of medication by people with mental handicaps in relation to age, level of mental handicap and living facility. DESIGN: Cross-sectional study. SETTING: Institutions and group homes for people with mental handicaps in North Brabant and Limburg, the Netherlands. METHODS: Of a patient sample (n = 1265), stratified according to age and living facility (i.e. institution or group home) data were collected by means of questionnaires to be completed by the general practitioners. For 101 persons data about level of mental handicap were lacking. RESULTS: 57% of the patients used one or more drugs. The numbers of drugs used were significantly related to (increased) age and level of mental handicap. Older patients more often used antipsychotics, laxatives and cardiovascular medication, younger ones more often used anticonvulsants. More severely handicapped persons used antipsychotics, anticonvulsants, laxatives, antacids, psychoactive medication and gastrointestinal medication more often. There was no relationship between amount of medication and living facility. CONCLUSION: Many mentally handicapped use medication. Since epilepsy, psychiatric and behavioural diseases and gastrointestinal problems are frequent, and because the patients offer little spontaneous information, alertness with respect to drug interaction and side effects is indicated.

The need for assessment of sensory functioning in ageing people with mental handicap.

Within the framework of a study on the ageing process of people with mental handicap in the Netherlands, information about visual and hearing impairments in 1583 people with mental handicap living in group homes or institutions was obtained from their physicians by means of a written questionnaire. Of the people with Down's syndrome (DS) who were older than 50 years of age, 46% had a visual impairment, whereas approximately 13% of subjects with other causes of mental handicap at the same age experienced similar visual impairment. Hearing loss in this age group was reported in 28% of people with DS, but only in 8% of subjects with other causes of mental handicap. The most common eye condition was cataracts, and the most frequent cause of hearing impairment was infection. In people with severe and profound mental handicap of all ages, sensory impairments were more frequent than in persons with mild or moderate mental handicap. Glasses or hearing aids were rarely used by people with severe or profound mental handicap. Assessment of visual and hearing impairments in people with mental handicap seemed clearly indicated, especially in those aged 50 years and older, in those with DS, and in those with severe or profound mental handicap.

Care dependence and services planning.

For policy purposes as well as for the provision of individual care, it is relevant to know which individual characteristics have an impact upon the level of care dependence. For policy purposes, it is preferable to predict the level of care dependence as efficiently as possible. This study of residents of institutions and group homes for people with mental handicap showed that profoundly mentally handicapped residents are almost all totally dependent upon care: additional information about the individual characteristics of this group is superfluous. The results of logistic regression analyses for residents with severe or mild mental handicap showed that age, gender and aetiological diagnosis (Down's syndrome or other) do not have significant predictive power. For the level of care dependence, adding the score on Activities of Daily Life (ADL) to the various models improved the predictive power. It depends on the level of mental handicap and on the level of care dependence which one wants to predict which other individual characteristics have to be included in order to improve predictive power.

Mental health problems in elderly people with and without Down's syndrome.

This article reports on age-specific findings of mental health problems among residents with Down's syndrome (DS) (n = 307) and without (non-DS) (n = 1274 in dutch group homes and institutes for people with mental retardation. Whereas a proportional increase of psychological problems was found for elderly DS persons with severe mental retardation, non-DS residents did not show such age-specific differences. High ratings of psychological problems for the elderly DS residents corresponded very well with the diagnosis of 'dementia' made by the physicians. Only for non-DS persons with severe mental retardation was a proportional decrease of challenging behaviour found with advanced age. Whereas psychological problems in elderly DS persons could be explained for the greater part of the diagnosis 'dementia', challenging behaviour--although also common in elderly DS--was shown to be a more independent phenomenon. With regard to psychiatric diagnosis, non-DS residents with mild retardation had six times as much a mental disorder, and non-DS residents with severe or profound mental retardation had up to 15 times as much, compared with their DS peers.

Elderly residents in Dutch mental deficiency institutions.

In the period 1986-1988, a cross-sectional study was carried out in 21 mental deficiency institutions in two provinces of the Netherlands. One of the key-questions of this study was whether there are differences between the younger and older adult mentally handicapped in Dutch mental deficiency institutions, in prevalences of diseases and sensory handicaps, mobility, motor skills and social functioning. In this article, some results of the study are presented.

Psychiatric foster care for adult patients: results of a study in The Netherlands.

Since the 1920s psychiatric foster care has been considered as an important alternative to psychiatric hospitalization in the Netherlands. About one percent of the mental hospital patients are actually living with contracted families. These patients have their meals with their foster families, and stay there at night and at the weekends. Foster families can obtain support from hospital staff. Day-programmes, treatment and work rehabilitation, however, are usually undertaken in the grounds of the mental hospital. Some data will be presented on the characteristics, skills, social integration and consumer satisfaction of all 188 patients staying with 162 foster families. A comparison is made with a random-sample of hospital inpatients (N = 381), patients in sheltered homes (N = 179) and in day-centres (N = 86).

Defining fragility of the elderly severely mentally handicapped according to mortality risk, morbidity, motor handicaps and social functioning.

The main aim of this study was to find a cut-off point in the age-distribution at which the physical fragility of the severe mentally handicapped residents increases. The following criteria for age-related fragility were used: mortality risk, morbidity rates of chronic diseases, motor problems and social functioning. The age-specific mortality risks were computed by means of data of the National Case register in the period 1978-1983. The morbidity-rates, rates of motor handicaps and handicaps of social functioning were calculated from a random sample of 550 severe mentally handicapped in 100 institutions and sheltered homes. The results of this cross-sectional study showed a high prevalence of diseases and handicaps, and a high mortality-rate until the age of 30, mainly determined by pre- and perinatal birth defects. The most healthy residents were found according to our criteria in the 30-50 year age group. A significant increase in health problems of 'the elderly' were observed only after the age of about 50 years, as indicated by a high prevalence of diseases and sensory handicaps, mortality risk, motor problems and problems with basis personal skills. The linguistic skills of elderly persons were significantly better in comparison with the younger residents.