1. Does the person have capacity?

  • Yes: Check his preference on receiving the news. Give him the diagnosis and related chunks of bad news. Follow the guidelines to support understanding of the implications, including treatment and prognosis.
  • No: Discuss with carers and professionals how best to build understanding. Follow the guidelines to build understanding. Carers may be told first, but check with intellectual disability professionals before doing so.
  • Not sure: Ask intellectual disability professionals to help assess capacity.

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2. What knowledge does he possess already?

  • Gather this information from the person himself, carers and colleagues.
  • Someone’s existing ‘foundation of knowledge’ is affected by:
    • intellectual capacity
    • life experience
    • world view

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3. What size are the knowledge chunks he can cope with?

  • Many people with intellectual disabilities can only cope with one new idea at a time.
  • Never give more than one idea per sentence. Allow time for the information to be processed.
  • The size of knowledge chunks people can process depends mostly on their intellectual capacity.
  • Ask family carers, paid carers and intellectual disability professionals how large the chunks of information can be for this person.

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4. How many more chunks of knowledge can he be helped to understand?

  • Ask the opinion of family carers, paid carers and intellectual disability professionals
  • Be guided by carers’ knowledge of the person, rather than their wishes. Some carers may be protective: assess whether protection from disclosure is in the person’s best interest.
  • Knowledge can be built over time; some knowledge chunks take months to understand and need continuous reinforcement.

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5. Is he able to understand this specific chunk of information at this point in time?

  • Any new information or knowledge only makes sense to him if it is supported by an existing ‘foundation of knowledge’.
  • If he is unable to understand something now, he may be able to understand it in the future.
  • It is usually best to start with the facts of what is happening now, and build understanding of the implications.

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6. Is it important that he understands this specific information NOW?

  • People with capacity should be involved in treatment and care decisions. They need to understand.
  • Refer to the laws on Mental Capacity.
  • Ask for help from intellectual disability experts if urgent understanding is needed.
  • In case of sudden changes in someone’s situation, he needs to be helped to understand what is happening as quickly as possible.

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7. What is the best way/place/time to give the person the best chance of understanding?

  • The consultation room may be where someone first hears the news, but it may not be where he begins to understand it.
  • Many people with intellectual disabilities understand new information through experience, in their own social context.
  • Carers must have good information if they are to help someone understand.

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8. Who can best help him to understand?

  • People that he trusts.
  • People who are able to communicate well with him.
  • Consider both health professionals in your clinical setting (eg specialist nurses; speech and language therapists) and family or care staff in the home setting. All should have a mandate to add or reinforce chunks of knowledge at the appropriate times.

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9. What and who does he need in order to communicate in the best way?

  • Are there family or other carers who can help him to communicate? Some people with intellectual disabilities rely heavily on a specific carer for this.
  • Consider the use of accessible materials (pictures, easy-read information and other audio-visual materials) and story-telling.

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10. Can he be harmed by receiving this chunk of information at this point in time?

  • Most people cope best if they understand what is happening.
  • Can he retain and balance the information? If not, he MAY be harmed by receiving it: discuss this with intellectual disability professionals and carers.
  • Consider his concept of time and capacity for abstract thinking.

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