Central to the guidelines is a gradual building of someone’s foundation of knowledge

At all times, you must consider:

(1) someone’s understanding and capacity

(2) all the people involved in the situation

(3) the support needs of everyone involved

Find out more about each component by clicking on the graphic below.

Building a foundation of knowledge

Understanding

    • Assess the person’s mental capacity. Capacity depends on understanding, taking on board and retaining relevant information for long enough to make the particular decision.
    • Local/national legislation must be followed. Practitioners must understand how this applies to the person’s situation. (For example, the Mental Capacity Act in England and Wales)
    • There is an assumption of capacity.
    • How much someone is able to understand at a particular point influences decisions around when and how to impart what aspects of the bad news.
    • People with capacity will still need to be given information in chunks, suited to their way of processing information.

Because:

It is essential to consider someone’s capacity to understand, and the way different people understand and make sense of the same information.

With each new chunk of information, you must decide whether the person will be able to understand it. Some people may not be able to understand certain aspects of the information at this specific point in time. If this is the case, it does not make sense to give it; rather, you should stick to the information he can understand. Of course, this is sometimes hard to assess – people may be able to understand more than we think.

In order to give people the best chance of understanding, we must consider what and who they need to help ensure the best possible communication, and how information can be given.

Support

Establish the support needs, and the person(s) best placed to provide that support, of:

  • The person with intellectual disabilities
  • Everyone else involved, including family, friends, carers and professionals.

Because:

Many people will be affected personally by the bad news, particularly family and carers. They are needed to help someone with intellectual disabilities to understand and cope with the news, but in order to do so, they themselves may need help and support. This could be information, emotional support, social support, practical support and/or spiritual support. Very often, paid care staff and professionals also have specific support needs.

The people involved

  • Establish who is involved in, or affected by, the bad news situation (‘stakeholders’). This can include family, partners, friends, paid care staff, health and social care professionals.
  • Establish what each stakeholder knows about the person’s current knowledge framework.
  • Establish what knowledge chunks each stakeholder holds. This may include knowledge about the illness and prognosis, or the person’s life history, understanding and communication. For example, a doctor may know how someone’s illness is likely to progress; a family carer may know how the person has coped with bad news in the past; an intellectual disability nurse may know how to break complex information down to suit an individual person’s needs.
  • Establish who is best placed to impart and help the person process new chunks of knowledge.

Because:

Everyone with a significant involvement in the life of the person with intellectual disabilities should be included in the bad news situation: families, partners, friends, circles of support, paid care staff, health and social care professionals. They may all have a different but important role to play in helping someone understand and cope with the news that is going to affect and change her life.

Building a foundation of knowledge

  • Break complex information down into singular, discrete chunks (or pieces) of information. A seemingly simple statement (eg ‘Mum has cancer’) usually encapsulates a vast range of background knowledge, as well as knowledge about immediate and future changes and implications.
  • The size of the chunk depends on the person. Some people can cope with larger ones; others need them broken down further.
  • Give the person these chunks of information one by one, in order to build a solid foundation of knowledge. Additional information can be given as the person’s foundation of knowledge grows.
  • Consider what ‘background knowledge’ the person possesses already. This will depend on the person’s life experience and world view as well as intellectual capacity.
  • New information needs to make sense to the person. To someone whose primary way of understanding is through experience or objects of reference, verbal explanations will not make sense. People with severe cognitive limitations may never be able to understand the future. Decide whether it is important that the person understands this information now. This could be the case if he needs to be involved in treatment decisions, or if the information is related to immediate changes (such as a sudden death in the family).

 

Because:

Gradually and over time, someone with intellectual disabilities builds his understanding of the bad news which is changing his life. The people around him can help by giving small, singular chunks of information that make sense to him. There is little point in giving someone information that he cannot understand. Perhaps the information itself is too complex or too abstract, or perhaps he cannot make sense of the way the information is given. You may need to wait until later, when the information might make more sense (for example, because an illness is now more advanced and there are more symptoms); or you may need to find a different way of conveying the information. Building someone’s foundation of knowledge does not have to be done simply by talking. Much of the information will be understood through experience, or in non-verbal ways, such as looking at pictures. Many people also benefit from repetition.

Some questions to ask yourself

Bad news situations are usually complex. They are made up of lots of different chunks of knowledge and information. Here are some ‘background questions’ you need to ask:

  • What is this person’s capacity to understand?
  • What parts of the bad news does he understand already?
  • How much more can he be helped to understand?
  • Is he able to understand this specific chunk of information at this specific point in time?
  • What is the best way, place and time to give him the best chance of understanding the information?
  • Who can best help him to understand?
  • What does he need in order to communicate in the best way?
  • What does everyone else need in order to be able to support him?