23
Sep
2019

The theme-room

Last modified by Gerritjan Koekkoek on 2019/09/23 15:19
23
Sep
2019

The theme-room

Last modified by Gerritjan Koekkoek on 2019/09/23 15:19
  • A Theme-room is a place or 'method' for family, informal carers and professional carers to talk to each other about the care and support of people with intellectual disabilities.
  • A Theme-room has been developed as a digital version of the Dementia Table. This is a method for organising 'live' meetings in the region about mental disabilities, ageing and dementia. The Dementia Table was developed in the project 'Dementia Table - sharing and improving'. KansPlus, network of interests for the mentally handicapped, initiator and leader of this project. 
  • As a partner in the Waihona project, KansPlus helped to set up a digital version of the Dementia Table for rare diseases. This under the name Theme-room.

About the Theme-room

A Theme-Room is a digital meeting for family, friends and professional carers of people with a (rare) disorder and a (mental) disability. In an open and familiar atmosphere they share experiences and knowledge about the support or health of these people.
Family, friends and professional carers can tell their story (contact with fellow sufferers), share their experiences and knowledge and learn from each other's questions. 

"In the theme room, the conversation, the exchange, is the most valuable. By organizing this in a good way, it provides understanding for each other and meets the enormous appetite for information that clearly exists among all parties. The signal-possibility of a theme room is also important: questions that remain unanswered during the discussion can be linked to further research. Both facets increase the chance of improving care and support."

Who is the Theme-room for?

The Theme-room is for family members, friends and professional helpers of people with intellectual disabilities.

  • Family members (or relatives): parents, brothers and sisters, grandparents and grandmothers, uncles and aunts, nieces and cousins.
  • Friends: volunteers, neighbours, acquaintances, otherwise involved.
  • Professional counsellors: counsellors, teachers, behavioural experts, (para)doctors, researchers.

Employees of municipalities or municipal authorities  can also be involved in the Theme-room.
Because they provide outpatient support for people with intellectual disabilities.

  • People who make policy around support for people with intellectual disabilities that live (independently) at home or with supervision, and for their family and friends.
  • Employees of social district teams, consultants.

Subsequently, also / / people with (mental) disabilities / / themselves can talk in the Theme-room.
NB: Family members (and also social workers) may find it pleasant to talk to each other without their family member or client. People with intellectual disabilities themselves are often not able to follow it very well. We can, however, choose a theme that also appeals to participants with a mental disability. For example, the theme 'life stories/lifebooks'.

What do we want to achieve with a Theme-room?

  • Meet each other (networking), share experiences and knowledge.
  • Learn from each other's questions.
  • Identifying which questions remain unanswered and linking this to research. 

Formal objectives of the Theme-room are:

  • A better quality of support (advice given in the topic room must be evaluated, deepened and improved for this purpose). 
  • the awareness of professionals and relatives with regard to the specific questions
  • A better quality of care provided by professionals.

Social Support Act
This does not only apply to people with intellectual disabilities who live in a housing facility. More and more people are living (accompanied) independently with their families at home. Within the framework of the Social Support Act it is also important that good support is available for these people. Municipalities have a duty to organise this within the framework of the Social Support Act. Not only for people with (mental) disabilities, but also for friends, family and professional counsellors.

SUPPORT PLAN
In the current developments, it is permanently and increasingly important to involve clients in support. What matters to them is what they think is important and that the care and support they receive ensures a good quality of life. The conversation between clients, representatives and social workers is therefore very important. Just like the joint drawing up of a care support plan. The Theme-room provides the meeting between (clients), representatives and social workers.

The Theme-room as a digital meeting

  • A Theme-room-meeting follows a fixed structure (for example in five blocks). 
  • Involved professional counsellors, family members and friends take part in the meeting.
  • The discussion leader ensures that the meeting runs smoothly and that people feel safe and have their say.

The infographics used below are after the example of the Dementia Table as a meeting.
These infographics show which organisational elements are important for the success of the meeting.

infogr_voorbereidingdt_handreiking.jpg

Organisation team Theme-room
These are the people who shape the Theme-room:
  • a 'host': this is the organisation that makes the space available and connects it to the communication channels of the participants
  • a discussion leader/coordinator: someone who opens and supervises the meeting
  • a guest speaker: someone who introduces the theme, tells more about the theme or about their own experiences
  • helpers: (experienced) who welcome people, provide information and answer individual questions.
Programme sequence
The programme is based on a fixed structure of three blocks.
  • Day 1 - kick-off: welcome, presentation theme (supported by film/webinar1, chat) 
  • Period 2 - discussion: sharing experiences
  • Period 3 - evaluation: through informal discussion, and conceptual summarizing
  • Closing - publication: summary of the discussion for the participating group and for other audiences. We also make sure experience stories , questions asked will stay available to the 'owners'. Where needed shared stories and questions are generalized and anonymized by the helpers.
day 1 - Kick-off
Walk-in. The participants of the Theme-room will be welcomed by the people of the organization team. They refer to the possibilities of the Theme-room and the tools (via an instructional video).

Tip!

It is important that people feel comfortable and welcome. The atmosphere of the page where the Theme-room takes place, is also a determining factor. Provide a cozy atmosphere by using the right language and right sort of images!.

Welcome and presentation thema
The discussion leader/coordinator opens the meeting. He/she describes what will happen on the page and announces the theme and the guest speaker/host presentation.

A guest speaker introduces the theme of the meeting. 

Possibilities to introduce a theme:

  • Presentation by a professional counsellor (e.g. a psychologist, remedial educationalist, behaviouralist, counsellor, any...) or an expert by experience, supported by clearly legible text and images.
  • The film will be used to talk to those present. What do they recognise, what does it evoke?
  • webinar with an interview with an experienced expert, family member, counsellor, external expert. They give examples, personal stories. Do people recognize themselves in this?
Dementia table Veldhoven - September 2014

Inge's brother Jurgen has a mental handicap and dementia. In a conversation with the behaviourist of the healthcare organization where Jurgen lives, she talks about her brother.
"I am used to living with a brother who has a disability. But I'm not used to living with someone who has dementia. This is new for all of us and also very difficult. When Jurgen turned 50, we made him a photo book. As a family, this book is also very useful to us. It shows how Jurgen was."
"It is good to talk to each other about dementia in people with intellectual disabilities. As a family we have done the same with the care workers. It has brought us closer together."
"(Source: SAGs, December 2014)"
Introduce theme
Introduce theme by interview with experience expert
Marga van der Horst is involved in experiential theatre

At the Dementia Table in Angerlo she plays a woman with dementia. She lets people in the room react to her.
In this way Marga plays a scene in which she is waiting for her grandmother, who has died a long time ago. "When someone is told that her grandmother has been dead for a long time, she gets a tremendous shock time and time again. Because she doesn't know anymore that her grandmother is dead. In people with dementia, it is important that you give them certainties and not that you keep contradicting them or telling them that what someone says is not true.
Introduce theme
Introduce theme through theatre

Tips! 

Make the presentation on the theme not too formal and especially recognizable. Involve the attendees in the presentation (interactively), so that it immediately comes to life.
The moderator and the guest speaker agree on the content of the presentation. In this way, the moderator (possibly together with the guest speaker) can continue the conversation with the attendees in a well-founded manner.

Pause, in the digital world this could mean a break of a number of days
A break can be taken during the presentation. There will then be 'live' opportunities for mutual contact and room for chat and photos. The organisation team can chat to the participants and encourage them to share their experiences and ask questions.

The moderator can also use the break to make an inventory of questions or comments from those present (via the chat). The discussion leader can focus on the questions and thus prepare the discussion.

During the break there is also an opportunity for the participants to look at the  'information table' (information sources that are given, reactions from others). It is desirable that someone from the organisation team can be reached at the information table. This is for answering questions and referring people.
In the comments area below at the Theme-room visitors can indicate which information they want to receive. They can also put in tips and comments, although it is advised that the tips are shared as much as possible via the experience stories. 

Period 2 - Discussion
The moderator invites people to share their reactions and experiences. 
Period 3 - Evaluation
The results of the theme-room are presented and consent is gathered. 
  1. ^ recording of the kick-off is a good idea, since one of the key advantages of the theme-room is that it helps people that can not attend on a certain moment. Recording it will will ensure these people are best equipped to participate to the full potential
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