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Quality of Life

The Quality of Life (QoL) indicators are a framework used by the World Health Organisation as a universal measure of how good someone’s life is. They have been adapted by Tracey Campbell ACT as a way people with communication access needs can give feedback on and have more control over their lives. 

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The resources below give AAC users the opportunity to think and talk about their life in a safe and predictable way. This gives those supporting AAC users the opportunity to listen to what is important to and for them. It gives AAC users the opportunity to live better lives. â€‹

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Terminology

There are many words that are used to describe people who do not use spoken words to communicate. Some of these terms including non-verbal and complex communication needs are considered old fashioned. Here is a resource explaining more about it The Words We Use | CommunicationFIRST. I am going to use the terminology AAC user. However the resources are designed so that there are a range of options giving people choice and the opportunity to participate regardless of people’s current communication abilities or access. â€‹

 

Here is a video explaining more about the purpose of using QoL. (INSERT VIDEO)

To use the resources there are four steps: thinking, talking, recording and acting on. Each of these steps are explained below.

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Thinking​

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Some people may need visual and audio prompts to help them think about things that have happened and remember them. For some these audio and visual reminders need to be exact and happen in the moment for others a visual or audio reminder after the event is enough. Perhaps you don’t yet know what is helpful. As people begin to use the resources they can think about the best ways to think about what is happening and important.

 

(INSERT PICTURE)

 

Talking

 

People will access QoL in a number of different ways. The methods included are just some suggestions, remember to think about the person and what suits them best. Communication partners should be fully supportive of people accessing QoL in the way that suits them. It is hoped that people can access the resources no matter how they communicate. 

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The focus person should direct the areas they want to discuss whilst at the same time be supported to discuss all of the topics regularly. If the person does not want to choose the topic, cover all areas in turn. If the focus person prefers to only concentrate on one area of QoL, offer them the opportunity to repeat the preferred area of discussion as well as one of the other topics. If the focus person never wants to discuss any of the topics you should be curious about why. Is this an area of life that is very difficult for them? 

The resources contain a questionnaire, symbols to use with talking mats and Aided Language Displays (ALD). It is expected that people may also use their communication devices and bodies to express their opinion on QoL. However, both are so personalised that there are guidelines and suggestions but no specific resources. 

 

There are a few different ways you can access QoL

  • Answer the questionnaire

  • Use a Talking Mat

  • Use the words in their communication device

  • Use the ALD’s provided

  • Use their body, face and gestures

For a more detailed description of each see below.

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Questionnaire  

 

For those who are able to sit for a dedicated amount of time (around 15 minutes for an experienced AAC user using partner assisted scanning) the easiest of the resources to use is likely to be the Questionnaire. The advantage of this is that you can easily record the answers and you are ensuring that you are covering all of the areas in one session. Ideally the AAC user can then expand on any of the questions as they choose. This can be achieved by writing a sentence or two on an area of their choosing after finishing the questionnaire.

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If you like the idea of the questionnaire to record the answers but think answering all the questions in one sitting would be too much you could create multiple questionnaires.

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Here is a link to a video of someone completing the questionnaire
 

(INSERT LINK)

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Talking Mats™

 

These resources should be printed and cut into individual symbols. For longevity you could laminate them. If the person prefers things to stay in one place you can use Velcro backs and a carpet mat. 

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If you are not familiar with Talking Mats there is training available both online and in person. Here is a link to the website for more details Talking Mats | Improving communication, improving lives

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Talking Mats use symbols to help a person discuss their views on a particular topic. 

Top Scale ↓

 

(INSERT PHOTO)

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↑ Topic

 

Figure 1. A digital talking mat the topic is shown by the symbol on the bottom of the diagram and the top scale is the three symbols at the top of the scale. Top scales differ according to the subject area. There are recommended top scales for each set. The options (the symbols in the middle) about the specific topic are then placed under the specific heading on the top scale according to the person’s opinions.

 

When all the symbols have been placed, starting from the right to left, ask the person if there are any changes they want to make to their answers. Offer opportunities for the person to say more about any of the topics both during and after the Talking Mat. Giving opportunities for discussion regularly allows people to discuss what they want whenever they are ready. It is always recommended that the words to discuss QoL are added to a robust communication system and the AAC user knows how to access them. 

 

Here is a video example of doing a Talking Mat (INSERT VIDEO)

 

People who are Talking Mats trained and have access to either digital or paper resources may want to use their resources. Over time you may want to add in additional symbols that are particularly relevant to the person you are supporting. Please consider if the subject is covered by one of the other areas and ensure that you are adding choices for the person to communicate more about what they want to discuss. 

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Vocabulary

 

Rating scales 

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For those using the questionnaire to discuss everything at once it is recommended that you use the same rating scale for each question. This makes it easier and quicker to answer the questions. 

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When you are having further discussions these rating scales may be useful 

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Aided Language Displays

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An Aided Language Display (ALD) is a single page that contains symbols relevant to a particular topic or activity. The vocabulary is limited which can provide focus but it does make it hard for a subject as broad as QoL. There is one ALD that is for the AAC user to give feedback perhaps whilst watching the video, looking at the PDFs or during a discussion. The other ALDs have vocabulary that is related to each topic.

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To use an ALD you point to the symbols whilst you are speaking the words aloud. 

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If you decide to create your own ALD to use language that is more suited to the person discussing their QoL please remember to include …. (MORE TO GO HERE?)

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Communication devices

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Due to the diverse nature of QoL discussions and AAC language systems no specific pages have been created. It is recommended that the following is added to the device 

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  • Rating scales

  • Language from the Talking Mats and ALD

  • Specific words that work for your situation 

 

Body language

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People who have not yet had exposure to use AAC can access the QoL resources. People often develop ways to communicate through their natural body language, which is recognisable by familiar communication partners. When looking at the resources together observe everything the person is saying using their bodies, facial expressions and vocalisations. If you would like to understand more about recognising and shaping natural body language here is a quick bitesize video explaining it (ADD LINK TO RETT UK VIDEO)

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Of course when people are only using their bodies it can take longer to know exactly what they are reacting to. You may need to break the topics down further. Here is an example of how to do that. (ADD LINK)

 

Everyday conversations 

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As the QoL resources are a way to ensure people are leading a good life the concepts and ideas should not be restricted to formal sessions. This not only runs the risk of being forgotten about but also may leave people with the impression that they should only be commenting on the things that are happening in their life within those sessions. Ideally communication partners can be using the resources of the person's AAC to discuss things that are happening in their lives and referring back to the concepts in QoL as they arise. Communication, physical and mental health, relationships and lifestyle choices happen everyday so there will be plenty of opportunity.

 

Here is an example of having a conversation and linking it back to the person’s QoL. 

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(INSERT LINK)

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Recording

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It is important to record things that are discussed during the QoL discussions, even if they are part of a routine discussion. Recording can allow people to see patterns and help them remember what things require action. 

 

Many people already have ways of recording what is happening in their lives and things that require actions. If you already have a good system, use it. If possible AAC users should have access to resources and/or vocabulary to discuss their QoL. This means they can remind the people who can help them action anything that needs to change or happen. 

 

(INSERT PHOTO)
 

Here is an example of what a page in AAC might look like for storing records of what was discussed.  

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(INSERT PHOTO)

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Here is a paper based resource used to remember discussions. 

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(INSERT LINK)

 

Acting on QoL

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When discussing QoL some actions may be very easy to put in place. However some may require a little more thought. Sometimes just holding the thought and keeping it as a point of discussion can be enough. Saying out loud that you hear what they are saying and are going to act on it is important for people to know they are heard, even if the action cannot happen soon. A more formal planning session may be required and/or you might need other people or extra resources and vocabulary available for the AAC user. When you do take action you should review if the things have worked. Using the QoL resources should mean that this is done naturally. 

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(INSERT PHOTO)

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What is included in QoL resources? 

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As referred to above there is a video and accompanying PDF explaining the purpose of QoL. 

 

https://www.canva.com/design/DAGk5b6dxag/wnz-zOG0nX_z4_V51W0Qdw/edit?utm_content=DAGk5b6dxag&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

The QoL questionnaire â€‹- https://forms.office.com/r/2uJYu9eNb9 

 

Talking Mat to match questionnaire - QoL Talking Mat.pdf

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Here is a generic ALD that can be used to give opinions whilst watching the video or reading over the PDFs - QoL ALD for opinions.pdf

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It is advisable to stick to one rating scale for the questionnaire. This is the one that matches

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QoL opinions rating scale - QoL rating scale.pdf

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However you may need more rating scales when having further discussions. Here are some examples of potentially useful rating scales. 

 

Time rating scale - Time rating scale.pdf

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Amount rating scale - Amount rating scale.pdf

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The WHO QoL covers relationships, physical and mental health and community. These resources have renamed community as lifestyle and added in a fifth area, communication. 

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Each of the areas comes with a video explaining what each of the areas is about and a PDF of the different pages of the video for those who prefer to interact with them that way. There is also a Talking Mat and ALD for each of the areas. 

 

Communication 

 

Canva Video 

https://www.canva.com/design/DAGk-IGYSPA/My2MmHkyU1zNu3sVBrKRoA/edit?utm_content=DAGk-IGYSPA&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

Talking Mat - QoL Communication TM.pdf 

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ALD - QoL Communication ALD.pdf

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Physical health

 

Canva video 

https://www.canva.com/design/DAGk-kXII4o/FhdN4UJLQUoENMKDVgtP9w/edit?utm_content=DAGk-kXII4o&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

Talking Mat - QoL Health TM.pdf'

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Information about this mat medicine, balance, eating and drinking are not part of the original WHO QoL Bref or the questionnaire but you may find them useful if they are applicable. These words may not be in health in some communication devices. 

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ALD - QoL Health ALD.pdf

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Lifestyle

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Canva video 

https://www.canva.com/design/DAGk_NVvVlY/5wltpal92cCMbvP7e--tug/edit?utm_content=DAGk_NVvVlY&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

Talking Mat - QoL Lifestyle TM.pdf

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ALD - QoL Lifestyle ALD.pdf

 

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Mental health

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Canva video

https://www.canva.com/design/DAGk-_JIxMo/ywBCt-lOsJnxroKWq1hRTg/edit?utm_content=DAGk-_JIxMo&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

Talking Mat - QoL Mental Health TM.pdf

 

Information about this Talking Mat - the last three columns are to break down what “think” means. They are not necessary for completing the questionnaire. Some of the words may not be in traditional AAC systems. 

 

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ALD - QoL Mental Health ALD.pdf

 

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Relationships

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Canva video

https://www.canva.com/design/DAGk-ZN6GeY/gdnul1aO2J6hJkPXHAqe6A/edit?utm_content=DAGk-ZN6GeY&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton

 

Talking Mat - QoL Relationships TM.pdf

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ALD - QoL Relationships ALD.pdf

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