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Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders (FASD). FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the literature on stigmatization related to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping., Author(s): Sylvia Roozen [sup.1], Sarah E. Stutterheim [sup.2], Arjan E. R. Bos [sup.3], Gerjo Kok [sup.1] [sup.2], Leopold M. G. Curfs [sup.1] Author Affiliations: (1) grid.5012.6, 0000 0001 0481 6099, [...]

Background: Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method: The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual disability teach sex education or not. An online questionnaire was therefore constructed to assess the important factors associated with teaching sex education. Results: Of the 163 staff members who completed the questionnaire, 39% provided sex education. Results show that it was mainly provided reactively. The main factor was the perceived social norm towards teaching sex education. Conclusions: If we want paid care staff to teach sex education reactively, then we need to focus on changing the perceived social norm. However, if we want them to teach sex education proactively, a new needs assessment should be conducted in order to identify the important factors to motivate and enable them to provide sex education.

Background: People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes. Methods: Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers. Results: All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation. Conclusions: Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory- and evidence-based approach. (Contains 6 tables.)

Background: Solution-focused coaching (SFC) helps individuals or groups to achieve their preferred outcomes by evoking and co-constructing solutions. SFC has been shown to be helpful for persons with ID as well as for teams coaching people with ID. Nominal Group Technique (NGT) helps to organize people's thoughts with regard to a single question. This study examines the perceived strengths of and recommendations for SFC for teams coaching people with ID via NGT, as well as the extent to which the NGT results reflect the results of an SFC questionnaire. Methods: In total, 54 staff members participated in SFC. Of these, 18 participated in NGT, while 36 completed the SFC questionnaire. The strengths of and recommendations for SFC were obtained via NGT. Interrater agreement was calculated via Cohen's kappa. Results: The strengths of SFC include "exploring hidden successes" and "focusing on solutions". It was recommended that "the results be consolidated in follow-up meetings". The participants agreed on the content of the strengths and recommendations, but differed in terms of priorities ([kappa] less than or equal to 0.1). Conclusions: NGT is a valuable tool in exploring people's opinions and priorities, but further research is needed to elucidate the perceived priorities of SFC for teams coaching persons with ID. (Contains 1 table.)

Organizations providing services to persons with intellectual disabilities (ID) are complex because of many interacting stakeholders with often different and competing interests. The combination of increased consumer demand and diminished resources makes organizational planning a challenge for the managers of such organizations. Such challenges are confounded by significant demands for the optimization of resources and the goal to reduce expenses and to more effectively and efficiently use existing resources while at the same time providing high quality services. The authors explore the possibilities of using "system dynamics modelling" in organizational decision-making processes related to resource allocations. System dynamics suggests the application of generic systems archetypes as a first step in interpreting complex situations in an organization. The authors illustrate the application of this method via a case study in one provider organization in the Netherlands. The authors contend that such a modeling approach can be used by the management of similar organizations serving people with ID as a tool to support decision making that can result in optimal resource allocation.

Improvements in client-caregiver relationships may lead to improvements in the quality of life of clients with intellectual disabilities (ID). For this reason, interventions aimed at influencing these relationships are important. To gain insight into the nature and intention of these relationships in the ID population, suitable measurement instruments are needed. This study examines the applicability of an existing relationship questionnaire designed for primary education, called the Student-Teacher Relationship Scale (STRS) on the basis of the following research questions: (1) What is the factor structure of the STRS? (2) Are there associations between STRS scales and other conceptually comparable instruments? (3) Is the STRS reliable? The participants in this study were 46 caregivers, who assessed 350 client-caregiver relationships. Psychometric research was conducted into the factor structure (n = 350), construct validity (n = 146), internal consistency (n = 350) and test-retest reliability (n = 177) of the STRS and the reliability of the individual scores (n = 350) among a study population of people with moderate and severe ID. The three-factor model of the STRS as used in primary education (1. closeness, 2. conflict, 3. dependency) was, despite minor deviations, also found in the ID population. Research into the construct validity of the STRS showed statistically significant correlations with other scales with which similarities could be expected. The internal consistency and test-retest reliability of the STRS in the population studied were very good. The 95% confidence intervals of the means were small, and these measurements can be regarded as reliable. (Contains 3 tables.)

Background: Research studies into the effect of therapies have shown that a good relationship between the client and his caregiver is a key factor in a positive treatment outcome. Methods: The nominal group technique (NGT) has been used in this study to discover what clients with intellectual disabilities feel contributes to a successful working relationship with caregivers. Results: The research reveals that from the clients' perspective the way in which caregivers deliver their support (a reliable, empathic and non-patronising attitude) is important. The particular types of support seem to be less influential in terms of treatment success. Furthermore, the results show that the clients' preferred ways of receiving help correspond with the basic assumptions in solution focused brief therapy. Conclusions: This research project demonstrates that the NGT is a valuable instrument in bringing to the fore of the opinions and priorities of clients with intellectual disabilities. Comparisons with studies into the client-professional working relationships among children and adults without intellectual disabilities reveal similarities to the outcomes of this research project.

Prader-Willi syndrome (PWS) is characterized by temper tantrums, impulsivity, mood fluctuations, difficulty with change in routine, skinpicking, stubbornness and aggression. Many studies on behavior in PWS are limited by sample size, age range, a lack of genetically confirmed diagnosis of PWS and inconsistent assessment of behavior. The aim of this study was to explore systematically the relation between behavioral problems and age groups, genetic subtypes and BMI categories in an adult PWS population. Participants were contacted via the Dutch Prader-Willi Parent Association and through physicians specialized in persons with ID. Behaviors were studied using the Developmental Behavior Checklist for Adults (DBC-A). The forms were completed by the main caregivers of 98 adults with a genetically confirmed diagnosis of PWS. Differences between age groups were statistically significant (ANOVA, p = 0.03). DBC-A total scores were higher in the consecutive age groups, with the most behavioral problems in the oldest age groups. Differences between genetic subtypes were also statistically significant (ANOVA, p less than 0.01). Persons with mUPD had higher total scores on the DBC-A than persons with a deletion. Those with a Type I deletion showed higher total DBC-A scores than persons with a Type II deletion. There were no statistically significant differences in DBC-A total scores between the different BMI categories. Individuals with a BMI less than 25 had higher scores on the self-absorbed subscale compared to persons with a BMI between 25 and 30. Unlike previous descriptions of the behavioral phenotype in adults with PWS, we did not find a reduction in behavioral problems in older adults. Therefore, special attention should be paid to behavioral problems as part of general management of adults with PWS. Longitudinal studies are warranted to gain more insight into the natural history and course of behavioral problems in adults and older people with PWS over the long term and possible risk and preventive factors. (Contains 4 tables.)

Previous studies have suggested an association between PWS and comorbid psychiatric illness. Data on prevalence rates of psychopathology is still scarce. This paper describes a large-scale, systematic study investigating the prevalence of psychiatric illness in a Dutch adult PWS cohort. One hundred and two individuals were screened for psychiatric illness. Case vignettes were written by the first author on 63 individuals with a positive screening on psychopathology according to the interviews, medical history, medication use and behavioural questionnaires. These case vignettes were rated by two psychiatrists specializing in intellectual disability (ID). Psychopathology was divided into four diagnostic categories: bipolar disorder with psychotic symptoms, psychotic illness, depressive illness with psychotic symptoms and depressive illness without psychotic symptoms. Nine out of 53 persons (17%) with a 15q11-13 deletion and 28 out of 44 (64%) persons with maternal uniparental disomy (mUPD) were diagnosed with a current or previous psychiatric illness. Depressive illness with psychotic symptoms was the cause of psychiatric problems in the majority of persons with PWS due to deletion (56%). In the case of mUPD, almost all individuals with histories of psychopathology suffered from psychotic symptoms (85%) with or without affective component. Psychiatric examination should be part of general management of adults with PWS, especially when caused by mUPD. More attention should be paid to the presence of precursor symptoms, indicating a developing psychiatric episode. Longitudinal studies are needed to gain more insight into the natural history of psychiatric illness in adults with PWS. (Contains 5 tables.)

Background: Individuals with Prader-Willi syndrome (PWS) are at increased risk for mental health and behaviour problems, such as skin-picking and compulsive behaviours. Prevalence and functional assessment of skin-picking, and its association with compulsive behaviour and self-injury, were investigated in a large group of individuals with PWS (n = 119). Materials and Methods: Data on demographic characteristics, skin-picking and compulsive and self-injurious behaviours were collected by questionnaires. Behavioural function of skin-picking was assessed by administering the "Questions About Behavioral Function" scale. Results: Skin-picking was found in 86% of the sample, and correlated positively with compulsive behaviours. No associations were found between skin-picking and other variables. Functional assessment suggest that in most cases (i.e. 70%) skin-picking primarily had non-social functions. Conclusions: Skin-picking and compulsive behaviours are common in PWS. In most cases, skin-picking may be maintained by contingent arousal reduction. Controlled studies on behavioural treatment are lacking. Implications for treatment selection are discussed.

This study examined articulation in 13 Dutch individuals (ages 7-29, IQs 38-83) with Prader-Willi syndrome using a picture naming test with transcribed samples subjected to analyses for articulation errors. Results suggest that the impaired articulation found is a function of IQ and that with increasing age, phonological problems gradually resolve while phonetic difficulties become more evident. (Contains references.) (Author/DB)