Turning disabilities into abilities. Promoting self-management in people with intellectual disabilities

This dissertation highlights that people with intellectual disabilities (ID) generally have the ability and the desire to manage their affairs more independently, which can positively influence their lives. Promoting self-management in people with ID therefore deserves more attention. Whereas previous self-management interventions for people with ID mostly focused on teaching singular practical skills, we aimed to target the promotion of overall self-management. Several barriers are experienced when trying to promote this, such as a lack of time for support staff to guide people with ID, and staff and relatives taking over. What seems necessary is more time and support, next to a clear, tailored, and step-by-step approach. Fostering the transfer of learnt skills to daily life also needs to be considered in interventions, as well as involving the support network of relatives and support staff. Staff need to ensure good communication and coordination between all people involved, adopt a tailored approach, positively encourage people with ID during the learning process, and let them handle things as much as possible themselves. In our evaluations of self-management interventions for people with ID, we concluded that these are generally found to be effective.Raamwerk, Universiteit LeidenHealth and self-regulatio

Self-management interventions for people with intellectual disabillities: a systematic review

Health and self-regulatio

Het bevorderen van zelfmanagement bij mensen met een verstandelijke beperking

Health and self-regulatio

Turning disabilities into abilities. Promoting self-management in people with intellectual disabilities

This dissertation highlights that people with intellectual disabilities (ID) generally have the ability and the desire to manage their affairs more independently, which can positively influence their lives. Promoting self-management in people with ID therefore deserves more attention. Whereas previous self-management interventions for people with ID mostly focused on teaching singular practical skills, we aimed to target the promotion of overall self-management. Several barriers are experienced when trying to promote this, such as a lack of time for support staff to guide people with ID, and staff and relatives taking over. What seems necessary is more time and support, next to a clear, tailored, and step-by-step approach. Fostering the transfer of learnt skills to daily life also needs to be considered in interventions, as well as involving the support network of relatives and support staff. Staff need to ensure good communication and coordination between all people involved, adopt a tailored approach, positively encourage people with ID during the learning process, and let them handle things as much as possible themselves. In our evaluations of self-management interventions for people with ID, we concluded that these are generally found to be effective.</p

Development of the Leiden Independence Questionnaire for Support Staff: a measure of staff behaviour regarding promoting independence of people with intellectual disabilities.

Dataset for 'Development of the Leiden Independence Questionnaire for Support Staff: a measure of staff behaviour regarding promoting independence of people with intellectual disabilities'

Promoting independence of people with intellectual disabilities: A focus group study. Perspectives from people with intellectual disabilities, legal representatives, and support staff.

Dataset from 'Promoting independence of people with intellectual disabilities: A focus group study. Perspectives from people with intellectual disabilities, legal representatives, and support staff'

Effects of a self-management training for people with intellectual disabilities

Contains fulltext : 203007.pdf (publisher's version ) (Open Access)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

Development of the Leiden Independence Questionnaire for Support Staff: a measure of staff behaviour regarding promoting independence of people with intellectual disabilities

Contains fulltext : 203005.pdf (publisher's version ) (Open Access)BACKGROUND: Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. METHOD: The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three-component extraction, and three sub-scales were computed. To assess internal consistency, Cronbach's alpha was calculated for each of the sub-scales. RESULTS: The LIQSS was found to consist of three internally consistent (Cronbach's alpha was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. CONCLUSIONS: The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS

Promoting independence of people with intellectual disabilities: A focus group study. Perspectives from people with intellectual disabilities, legal representatives, and support staff

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

Training staff to promote self-management in people with intellectual disabilities

Item does not contain fulltextBACKGROUND: 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