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Background People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self‐management in people with intellectual disabilities. Method Effectiveness was assessed with questionnaires addressing clients’ (n = 26) independence and self‐reliance, support needs and challenging behaviour, using a pre–posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. Results In the long term, the intervention group showed a significant increase in independence and self‐reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Conclusions Further self‐management research is required to investigate how independence and self‐reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation.

People with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to be independent. This study aimed to gain insight into the perspectives of people with ID, legal representatives, and support staff on promoting independence in this population. Two focus groups were conducted with people with ID (n = 7), two with legal representatives (n = 13), and three with support staff (n = 17). Topics included the meaning of independence, the current level and needs of people with ID regarding their independence, and what they perceived as barriers and requirements when wanting to promote independence in this group. Possible outcomes of a greater independence of people with ID were also discussed. Verbatim transcripts were analyzed qualitatively with a general inductive approach. According to the respondents, people with ID require support from others, but most want to be more independent. Various barriers are experienced when trying to promote independence. These concern barriers at the level of support staff (e.g., lack of time), family (e.g., taking over tasks), and of the persons with ID themselves (e.g., emotional difficulties). When promoting independence in this population, more support and time seem necessary, as well as a clear, step‐by‐step tailored approach and good communication between all parties involved. Last, several advantages (e.g., greater self‐worth) and risks (e.g., overestimation by others, greater exposure to hazards) were proposed that could result from a greater independence of people with ID. As this study showed that people with ID generally want to become more independent. This stresses the need for the development of interventions, which could benefit from the findings from this study.

ObjectiveAssess quality of life in patients with systemic lupus erythematosus (SLE) presenting with neuropsychiatric symptoms (neuropsychiatric SLE, NPSLE).MethodsQuality of life was assessed using the Short-Form 36 item Health Survey (SF-36) in patients visiting the Leiden NPSLE clinic at baseline and at follow-up. SF-36 subscales and summary scores were calculated and compared with quality of life of the general Dutch population and patients with other chronic diseases.ResultsAt baseline, quality of life was assessed in 248 SLE patients, of whom 98 had NPSLE (39.7%). Follow-up data were available for 104 patients (42%), of whom 64 had NPSLE (61.5%). SLE patients presenting neuropsychiatric symptoms showed a significantly reduced quality of life in all subscales of the SF-36. Quality of life at follow-up showed a significant improvement in physical functioning role (p = 0.001), social functioning (p = 0.007), vitality (p = 0.023), mental health (p = 0.014) and mental component score (p = 0.042) in patients with neuropsychiatric symptoms not attributed to SLE, but no significant improvement was seen in patients with NPSLE.ConclusionQuality of life is significantly reduced in patients with SLE presenting neuropsychiatric symptoms compared with the general population and patients with other chronic diseases. Quality of life remains considerably impaired at follow-up. Our results illustrate the need for biopsychosocial care in patients with SLE and neuropsychiatric symptoms.

Background To help people with intellectual disabilities lead a more independent life, it is important to promote their self‐management. This study evaluated the effectiveness of a self‐management training for people with intellectual disabilities directed at independent functioning in daily life. Method In the training, 17 people with intellectual disabilities worked on personal self‐management goals covering a wide range of everyday affairs. Primary outcome measures focused on goal attainment, independence and support needs. Moreover, outcomes regarding psychopathological behaviour and quality of life were explored. Data were collected before and at the start of the training, and 3, 6, 9 and 12 months later. Results The training contributed to the attainment of self‐management goals and to the reduction in support needs (p < 0.01). There were no changes in independence, psychopathological behaviour and quality of life. Conclusions Results indicate that the training supports people with intellectual disabilities to self‐manage their daily affairs.