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

Abstract

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+.

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

“…First, it is possible that CFP+ simply does not induce changes in DSPs' attitudes towards the participation of adults with VSPID. However, this finding would contradict the results of a previous study, which showed that after training, DSPs worked towards goals of improving self-management, involvement in existing activities, and developing new roles and activities for the target group (Hanzen et al, 2020). Nevertheless, our finding that DSPs were less focused on the disabilities of adults with VSPID could be understood as the first indication of a changing attitude, which is in line with a previous study (Hanzen et al, 2016).…”

“…The demonstrably effective BPRA approach (Korevaar & Dröes, 2016;Swildens et al, 2011), adjusted for adults with VSPID (Hanzen et al, 2016), prompted the development of CFP+. Moreover, drawing on recent work on the definition and operationalization of the concept of participation of adults with VSPID (Hanzen et al, 2017(Hanzen et al, , 2020, we tested CFP+ in a three-arm trial in which the PMM control group was considered a "low-dose" CFP+ intervention and the usual care control group served as a reference.…”

“…CFP+, which is aimed at improving the participation of adults with VSPID, is based on the demonstrably effective Boston Psychiatric Rehabilitation Approach (Anthony, Cohen, Farkas, & Gagne, 2002) and adjusted for adults with VSPID (Hanzen, Korevaar, Van der Putten, Zijlstra, & Waninge, 2016; Hanzen et al., 2020). Additionally, CFP+ includes the previously established definition and operationalization of the concept of participation for this target group (Hanzen et al, 2017) that has been included in the PMM brochure.…”

“…An awareness of the lack of consideration of some participation components and of the possible influence of DSPs’ attitudes on the participation of adults with VSPID led to the development of the “Care for Participation+” (CFP+) initiative (Hanzen et al., 2020) to address these issues. CFP+ includes a training for DSPs that focuses on their knowledge, consciousness, attitudes and skills relating to the participation of adults with VSPID.…”

The Impact of Cognitive Impairment in Children with Intellectual Disabilities

“…These difficulties seem to have a kind of resilience throughout the stages of individual development that make it difficult to improve the situation and overcome this limitation definitively [Hanzen, van Nispen, Vlaskamp, Korevaar & Waninge et al, 2020]. Early interventions, however, significantly improve functioning both socially and practically [Syed, Neelofur, Moran & O'Reilly, 2020;Brown, Brown & Dibiasio, 2013].…”