EVIVO+
Taking control of your health with a chronic illness and an intellectual disability
Phase 2
Type of project: Exploratory research
Disability concerned: Mental disability
Topics: Health
Status: Completed
This project is the second exploratory study in the EVIVO + project, the aim of which is to assess the adaptations that need to be made to a reduced version of the EVIVO+ chronic illness self-management programme for adults with an intellectual disability, by examining the accessibility of more abridged content and exploring the role of the educators involved in monitoring these people.
Adults with intellectual disabilities (ID) have insufficient access to chronic illness self-management programmes.
Educators play a major role in supporting these people to self-manage their illness. They do not feel sufficiently prepared to fulfil this role.
The aims of the project are to :
- Assess the accessibility of abstract content (pain management, fatigue and negative emotions) and intervention methods
- Identify the specific needs and levers/barriers to implementing workshops with more abstract content
- Assess the perceived impact of the intervention and the satisfaction of participants when abstract content is addressed.
- Identify the perceived skills, attitude, knowledge and training needs of educators regarding their role in accompanying and supporting self-management behaviours in adults with ID.
This exploratory study highlighted :
Objectives 1 to 3:
- Adults with ID need support and time to develop an action plan.
- Needs related to self-confidence and acceptance of illness were expressed.
- Participants rely more on external resources when their problem is related to an abstract topic.
- Humour seems to facilitate discussion.
- A room that is open to the outside world and bright encourages participation.
- To allay concerns, the information needs to be passed on to all the professionals involved.
- The more adults with ID are exposed to stress management exercises, the more receptive they are to them.
Objective 4
- Educators play multiple roles in supporting self-management of the disease and ask themselves questions about the balance between the role of protector and respect for residents’ need for autonomy.
Applying the principles (recognise, include, support and communicate) proposed by the Centre of Excellence for Partnerships with Patients and the Public’s model for learning together has helped us to improve our partnership with expert patients.
The creation of an interdisciplinary team with a wide range of expertise (carers (experts in ID or in the EVIVO programme), an educator and expert patients) was a strength in terms of reflecting on the adaptation of this programme, taking into account experiential, clinical and scientific knowledge.
The Innovation Booster process was very helpful in reflecting on the project, the involvement of expert patients and the follow-up to be given to the project.
This second exploratory study will enable us to
- Gain a better understanding of the needs of adults with ID taking part in the reduced version of the EVIVO programme, covering abstract content.
- Identify the levers and barriers to full participation for these people.
- Identify strategies for developing a full version of the EVIVO programme.
- To gain a better understanding of the role, perceptions and needs of educators in supporting these people in the self-management of their chronic illness on a daily basis.
The perspectives are :
- The development and evaluation of a complete version of the EVIVO programme adapted to the target audience (EVIVO+) and adapted support to promote understanding of these people.
- Identification of strategies to support the role of educators.