Intervention effects on professionals' attitudes towards the participation of adults with visual and severe or profound intellectual disabilities.

BACKGROUND: We investigated the effects of the "Care for Participation+" (CFP+) intervention on direct support professionals' (DSPs') attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID). METHODS: We implemented a pilot non-randomized controlled trial with two control groups to compare DSPs' attitudes towards CFP+ using the Attitudes towards Participation Questionnaire (APQ) and DSPs' written profiles of adults with VSPID. RESULTS: CPP+ and the Participation Mind Map control group showed a positive trend for the "leisure/recreation," "social relations," and "ability to act" APQ domains compared to the usual care control group. The CFP+ group described significantly fewer disabilities at 6 months, reflecting a more positive attitude than controls. CONCLUSION: CFP+ had positive effects on DSPs' attitudes towards the participation of adults with VSPID. The small sample size, ceiling effects, measurement instruments used, and implementation difficulties may have hampered understanding the full potential of CFP+.

Improving the participation of adults with visual and severe or profound intellectual disabilities: a process evaluation of a new intervention.

BACKGROUND: While the participation of adults with visual and severe or profound intellectual disabilities (VSPID) in society and community life is important, evidence-based interventions to improve their participation are lacking. We conducted a process evaluation of the implementation of 'Care for Participation+' (CFP+), a new intervention targeting the attitudes of direct support professionals (DSPs) toward the participation of adults with VSPID, within a residential facility in the Netherlands. METHODS: CFP+ was inspired by the Boston Psychiatric Rehabilitation Approach and adapted by adopting a new definition and operationalization of the concept of participation for adults with VSPID. Following systematic training, 16 DSPs of adults with VSPID were able to apply key elements of CFP+ to explore diverse roles and activities for this population, facilitating their self-management, teaching them necessary skills for participation, and organizing support. Our process evaluation entailed an investigation of the delivered dose, reach, fidelity, and adaptation of CFP+ during and after the CFP+ intervention. We also evaluated the mechanisms of impact and context using questionnaires, assignments, documentation, interviews, and a logbook. RESULTS: The intended dose, reach, and fidelity relating to the implementation of CFP+ were not achieved. Despite this fact, an assessment of the mechanisms of impact indicated that assignments of CFP+ were well (75%) or reasonably well (17%) understood by DSPs. CFP+ was applied by DSPs to stimulate self-management (83% of DSPs), new activities (100%), enhanced involvement in existing activities (67%) and to explore new roles (50%) for adults with VSPID. A negative contextual factor mentioned by the trainer and manager was the DSPs' lack of commitment to the training program. Another negative contextual factor mentioned by DSPs was the lack of time for implementing CFP+. CONCLUSIONS: CFP+ provides new opportunities to improve the participation of adults with VSPID. Despite the non-optimal conditions for implementing CFP+ and the DSPs' general reluctance to apply the new intervention, some have actively used CFP+ within the residential facility. Future studies should focus on the outcomes of CFP+ regarding attitudinal changes among DSPs relating to the participation of adults with VSPID and their quality of life.

Participation of adults with visual and severe or profound intellectual disabilities: Analysis of individual support plans.

BACKGROUND: The extent of participation of adults with visual and severe or profound intellectual disabilities (VSPID) is unclear. AIMS: To explore participation of adults with VSPID and the association between occurrence and importance of aspects of participation. METHODS: Individual support plans (ISPs) of 40 adults with VSPID were analyzed: selected text fragments were categorized according to 125 previously operationalized statements that had different levels of importance and were divided into seven participation clusters. RESULTS: The ISPs contained 2791 text fragments that related to a statement. All clusters were covered: the clusters 'Experience and discover' (91.7%), 'Involvement' (90%), and 'Social relations' (87.5%) were well covered. 'Inclusion' (53.6%) and 'Leisure and recreation' (57.1%) were mentioned less often. Among the 36 high-importance statements, two related to 'Inclusion', 'Involvement' and 'Social Relations' each, three to 'Communication and being understood', and five to 'Self-management and autonomy' had at least 30 text fragments. CONCLUSIONS: The participation domains 'Experience and discover', 'Involvement', and 'Social relations' are well-documented, suggesting that adults with VSPID participate in those areas. However, domains such as 'inclusion in society' and 'leisure in society' were not documented. This overview of participation offers residential facilities the opportunity to determine in which areas participation can be improved.

Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization.

BACKGROUND: The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. AIMS: The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. METHODS: Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. RESULTS: A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. CONCLUSIONS: The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.