EVIVO +
Taking control of one’s health with a chronic illness and an intellectual disability
Phase 1
Type of project: Exploratory research
Disability concerned: Mental disability
Topics: Self-care and health, Chronic illness self-management skills
Status: Completed
The aim of this study is to adapt and evaluate a reduced version of a Chronic Disease Self-Management Programme for Adults with Intellectual Disability.
Adults with intellectual disabilities have inadequate access to self-management programmes, despite being in poorer health than the general population.
Our objectives are:
1. To assess the accessibility of intervention content and methods
2. Identify specific needs and levers/barriers
3. Assess the perceived impact of the intervention on participants’ self-management behaviour and satisfaction.
The main results are :
Accessibility :
- The duration of the workshops is adequate More breaks are needed
- The optimal group size is 6 to 8 participants
- The participative aspect of the workshops is much appreciated by the participants
- Modelling is useful to promote understanding by the target audience
- For exercises that are done with the eyes closed, a demonstration is necessary beforehand
- The participants need help in drawing up the action plan
- Support for the action plan is adequate and helpful
- Too much information displayed destabilises the participants
- The symptom loop diagram poses a problem of understanding
- The book is difficult to understand, too bulky and written too small
- The content of the workshops was greatly appreciated
- The stress management exercises were much appreciated, but more are needed.
- Participants expressed needs related to the following themes: balanced diet, physical activity, managing emotions, fatigue and pain.
- Participants noted that practical exercises would be helpful
- Speaking slowly, using simple words and examples, is helpful in understanding the target audience
- Participants and facilitators felt at ease in the group
- Participants listened to each other and showed respect and non-judgement.
Specific needs, levers and barriers :
- The information session on the project was helpful.
- Participants need more information beforehand
- The concept of chronic illness was not clear to all participants at the recruitment stage
- A room that guarantees confidentiality is needed so that participants feel free to express themselves.
- The room should not be too noisy and should be close to the outside.
- The institutional bus timetable should be taken into account
- Additional rest periods should be provided if participants attend on a day off
- Participants noted the importance of not having been financially penalised for missing work to attend the workshops.
- Institutional protocols should be taken into account
- Educators are an essential day-to-day support for participants but their role in supporting self-management of the disease is not clear.
Perceived impact and satisfaction:
- The participants said they were very satisfied with the two workshops
- The group discussions and the enhancement of their resources and skills were appreciated
- The participants (except one) were very satisfied with the completion of their action plan
- The application of the tools proposed in the workshops, through the action plan, was helpful for the participants
- Several participants discovered new resources
- The facilitators were very satisfied with this first experience with the target audience.
