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Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures. Results: Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) "Involving relatives in decision-making." As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) "Delegating quality of life assessments to relatives." Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) "Good working relationships." Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) "Knowledge of the patient's vulnerabilities." Physicians used their intimate, long-standing knowledge of the patient's fragile health. Conclusions: In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process. (Contains 1 figure and 1 table.)

Background: Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: "What are the lived experiences of a specific cohort of homosexual people with an intellectual disability living in the Netherlands?" Method: To answer this question, a qualitative study was performed in which 21 people with a mild ID were interviewed via semi-structured interviews. In this study, 19 participants were men and two were women (average age = 40.5 years). Results: Participants reported positive and negative experiences, and talked about their gay or lesbian identity. Almost half of the participants ("n" = 10) reported that they had experienced sexual abuse including partner violence ("n" = 6). Additionally, they indicated that there was a lack of support for homosexual people with an ID. Conclusion: Specific problems impact the lives of homosexual people with ID, namely the high prevalence of negative sexual experiences, the lack of support, training and sex education, and their search for a suitable partner.

Background: Community participation has been defined as performing daytime activities by people while interacting with others. Previous studies on community participation among people with intellectual disability (ID) have mainly focused on the domestic life aspect. This study investigates the variation in community participation in the domains work, social contacts and leisure activities among people with ID in the Netherlands. A number of categories of people with ID were distinguished by: (1) gender; (2) age; (3) type of education; (4) severity of ID; and (5) accommodation type. Methods: Data were gathered on 653 people with mild or moderate ID, of whom 513 by oral interviews and 140 by structured questionnaires filled in by representatives of those who could not be interviewed. Pearson chi-square tests were used to test differences between categories of people with ID in the distributions of the participation variables. Additional logistic regression analyses were conducted to correct for differences between the categories in other variables. Results: Most people with mild or moderate ID in the Netherlands have work or other daytime activities, have social contacts and have leisure activities. However, people aged 50 years and over and people with moderate ID participate less in these domains than those under 50 years and people with mild ID. Moreover, people with ID hardly participate in activities with people without ID. Conclusion: High participation among people with a mild or moderate ID within the domains of work, social contact and leisure activities does not necessarily indicate a high level of interaction with the community, because the majority hardly interact with people without ID. Furthermore, older people with ID and people with a more severe level of ID seem to be more at risk for social exclusion. (Contains 7 tables, 1 figure and 1 footnote.)

Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A retrospective study of medical files of people who died between January 2002 and July 2007. Results: One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision. Conclusion: This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

Background: Prader-Willi Syndrome (PWS) is a rare genetically determined neurodevelopmental disorder with a complex phenotype that changes with age. The rarity of the syndrome and the need to control for different variables such as genetic sub-type, age and gender limits clinical studies of sufficient size in any one country. A clinical research database has been established to structure data collection and to enable multinational investigations into the development of children and adults with PWS. Methods: As part of a joint basic science and clinical study of PWS funded through Framework 6 of the European Union (EU), an expert multidisciplinary group was established that included clinicians involved in PWS research and clinical practice, expert database software developers, and representatives from two national PWS Associations. This group identified the key issues that required resolution and the data fields necessary for a comprehensive database to support PWS research. Results: The database consists of six "index" entry points and branching panels and sub-panels and over 1200 data "fields". It is Internet-based and designed to support multi-site clinical research in PWS. An algorithm ensures that participant data are anonymous. Access to data is controlled in a manner that is compatible with EU and national laws. The database determines the assessments to be used to collect data thereby enabling the combining of data from different groups under specifically agreed conditions. The data collected at any one time will be determined by individual research groups, who retain control of the data. Over time the database will accumulate data on participants with PWS that will support future research by avoiding the need for repeat data collection of fixed data and it will also enable longitudinal studies and treatment trials. Conclusion: The development of the database has proved to be complex with various administrative a issues to be addressed. At an early stage, it was important to clarify the exact function of the database. It was agreed that it was primarily to support grant-funded research rather than clinical practice. The most complex issues that had to be addressed were concerned with data ownership and establishing the rules for data entry, retrieval and sharing that are compatible with data protection laws, and which are likely to be acceptable to participants and their families and to individual research groups

Background: Individuals with Angelman syndrome (AS) seem to have a strong preference for water-related items. Until present, preference assessment in AS has not been reported. Methods: An adapted Dutch version of the Choice Assessment Scale (CAS) was administered by parents and other caregivers to 105 individuals with AS. The CAS was adapted by adding several items related to water and by adding a sub-scale describing activities and materials that individuals may avoid or escape. Results: The five sub-scales and total scale of the modified CAS had good internal consistency. Water-related items were more often scored as preferred than non-water-related items. No associations were found between sub-scale and total scale scores and demographic characteristics (e.g. genetic subtype, age). Conclusions: This study shows that people with AS often have strong preferences for water-related items. The modified CAS is a reliable and sensitive instrument to assess client preferences.