Reliability and Validity of the Supports Intensity Scale (SIS) Measured in Adults with Physical Disabilities

The objective of this study was to investigate the internal consistency and the construct validity of the Dutch version of the Supports Intensity Scale (SIS-NL1.0; Buntinx 2006) in individuals with physical disabilities (N = 65). To investigate the construct validity, the relationship between SIS subscales and practical skills (Barthel Index; BI) was calculated. Support was provided for the internal consistency. The SIS subscales (except Behavior) had moderate to high intercorrelations and the SIS was able to discriminate between groups with different number of disabilities. However, weak relationships were found between the BI and four out of eight SIS subscales. For people with physical disabilities, future revisions of the SIS should also take into consideration limitations in practical skills in other support domains

Intellectual disability : definition, classification and system of supports

xvi, 259 hlm.: 27 c

The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

Item does not contain fulltextBackground 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

Co-designing with young adults with intellectual disability to develop social life skills

Participation in social media has become mainstream and accessible, especially among young people. Social media offer opportunities for social connectedness as well as content sharing and skills development. Developing social skills is an essential goal for young adults with Intellectual Disability (ID) as they are interested in greater social participation. This PhD research grounds itself in social participation, and in exploring how existing competencies with technology and interests mediated through technology can be leveraged to support social skills development and participation. Through this approach, we aim to understand how technologies are appropriated, abandoned, and how they might be reconfigured and redesigned while focusing on supporting social participation for young adults with ID. This PhD research will employ a Participatory Action Research Approach that involves qualitative methods and co-design workshops. As outcomes, the PhD would contribute an empirical understanding of social media use; a social skills training framework that leverages social media, and design guidelines and prototypes for social media platforms to better support social participation through social skills development of young adults with ID