1. What influences background knowledge?

How much background knowledge someone has is affected by intellectual capacity, life experience and someone’s view of the world.

Intellectual capacity

Someone with severe and profound intellectual disabilities may have such limited background knowledge that certain new chunks of information make no sense to her. There is no framework of knowledge to support it.

Someone may not have a clear understanding of death, so the news that Grandma has died has little initial effect: it isn’t supported by her existing knowledge or current experience. She may experience Grandma’s absence, but does not (yet) understand that the absence is permanent.

Life experience

Having been in similar situations before. This has a very powerful influence on people’s background knowledge.

Someone who has split up with a girlfriend in the past will more readily understand what is happening when his current girlfriend breaks up with him.

Someone whose mother has died after an illness will more readily understand that his ill father may die too. It is worth noting that people with intellectual disabilities often have far more experience with death than their non-disabled peers. As one mother said: ‘At my daughter’s special school there was so much loss around. I reckon she’s experienced the deaths of about ten young people.’

The person’s view of the world

This includes spiritual beliefs.

Someone who does not come from a faith background may not understand what it means that ‘Dad has gone to heaven’. Someone who believes that nurses always make people better may not understand that Dad is getting more ill, despite the visiting nurse. Someone who has lived in a stable family unit with all her siblings will find it harder to understand that her sister has moved away.

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2. When can we start building knowledge?

Building a framework of knowledge can take a long time. Sometimes, it can be a very painful process of learning through experience.

Building background knowledge

Background knowledge is built up throughout someone’s life. It is never too early to start building knowledge. You can start building a solid ‘framework of knowledge’ well before any bad news happens. For example, in order to help someone cope with future bereavement, you could consider the following:

  • Death education at home or college
  • Taking him to visit Grandma before she dies
  • Attending funerals of people that are not immediate family or close friends – so that when a close friend dies, he already has some
  • experience of funerals
  • Establishing rituals when pets die
  • Talking with friends and family who have experienced bereavement
  • Using events on television and in the news to discuss life events
  • Using a life story book

If you are anticipating future changes in someone’s life, you can start to build knowledge in a conscious and deliberate way. For example, a man with severe intellectual disabilities who attended a hospice day centre once a week was asked to assist staff by pushing the linen trolley when they replaced the bedding and towels in the hospice rooms. Two years later, when the time came for him to be admitted to the hospice ward, he had become so familiar with the ward and with the staff that he found the experience much easier to understand, and he settled quickly.

What is the best time for someone to understand the future?

Deciding when and how to help someone understand the future is a highly individual process. Some people need to learn through experience – although repeated verbal explanations can reinforce that learning.

For some people, it is best to wait until ‘the future’ becomes ‘now’. For others, it is important to understand the situation earlier, so that they can be prepared and fully involved.

Some people don’t want to know beforehand that a change will happen, because it would pre-occupy and worry them too much. Many, though, cope better if they are prepared.

Remember that ‘not revealing the truth’ does not make the truth disappear. Ask yourself whether you really have the option of protecting someone from the truth. How are you going to support her once the truth reveals itself?

If Karen Mackenzie is never told that her father is going to die, and she doesn’t expect him to die, then Karen will experience his death as sudden, which can be much harder to cope with. Consider the following two different scenarios, in which we imagine different levels of understanding for Karen.

Click on each alternative scenario to see how she is helped to cope with her father’s illness and impending death.

  • Karen’s family and the nurses explain the changes to Karen as they happen: ‘Dad is too ill to climb the stairs, and therefore his bed is now in the living room, because Dad will not get stronger.’ ‘Dad can’t get out of bed now. He will never get out of bed again.’
  • Karen is not told at this stage that the downstairs bed is only for a few weeks, or that Dad is going to die.
  • Karen is encouraged to help look after her father.
  • When Karen sees her mother cry, the nurse explains that Mum is sad because she is missing Dad being well.
  • When her father slips into semi-consciousness and is not expected to live more than a few days, Karen is told ‘Dad is going to die.’
  • Karen is encouraged to spend time with her father. When he dies, she is told immediately. She is encouraged to see his body, supported by staff from her college (because her family is too distressed to do this).
  • Karen is fully involved in the funeral.
  • During the following months, Karen and her family often talk about Dad together.
  • Well before her father became bedbound, Karen’s family often talked with her about what she liked doing with him. They explained to Karen that the week’s holiday at the seaside was very special, because it was going to be Dad’s last.
  • Karen’s father talked to her about his funeral. He asked her what hymns she liked, and what she would like to have to remember him by. They wrote it down together.
  • In her father’s final weeks, the nurses tell Karen (with her mother’s help) that Dad will not get better. They say: ‘We don’t know how much longer your Dad will live. We think he is going to die in the next few weeks.’
  • Karen decides that she doesn’t want to go to college, because she wants to be with her father now.
  • Karen and her mother are at her father’s bedside when he dies.
  • Karen finds much comfort in singing the chosen funeral hymns.
  • During the following months, Karen and her family often talk about Dad together.

We cannot say that one scenario is better than the other. In both scenarios, Karen is helped to cope with the changes in her life. How she is helped, and to what extent her ‘framework of knowledge’ is built upon, depends on her needs and those of her family. What makes things work well in both scenarios is that:

  • Karen’s current framework of knowledge was taken into account.
  • Karen’s ability to understand was taken into account; it determined both the sizes and the amounts of the new chunks of knowledge.
  • Karen was helped to gain new knowledge in a variety of ways – through explanations, through practical experience, and through conformation of her feelings.
  • Everyone helped and was involved in building Karen’s framework of knowledge, including the family and the nurses.
  • Karen was well supported, but so was her mother.

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3. Which chunks of knowledge should we give?

The new chunk of knowledge should make some sense to the person. For example, you cannot assume that someone with intellectual disabilities will understand the connection between illness and something that will happen in the future, or with something that has happened in the past. Therefore, for some people, giving the chunk of knowledge ‘Dad has cancer’ might not make sense (because she doesn’t understand what cancer is, and Dad doesn’t look ill). ‘Dad is going to die’ might only make sense during the final days, when Dad has slipped into semi-consciousness.

Is it important that someone understands the information now?

There may be good reasons why it is important for someone to understand information that is currently not supported by their framework of knowledge. Examples include:

  • Sudden bad news
  • The need to make decisions about treatment and care. The person should be involved as much as possible in making decisions that affect their lives. If the decision needs to be taken urgently, it will be necessary to speed up the process of building knowledge, helping him to understand as quickly as possible.
  • It becomes clear that the person would be helped by understanding things earlier than you thought, for example, because she is asking questions. There is no harm in trying to explain things earlier, if that seems the right thing to do.

Don’t give too many chunks of knowledge at once

  • Give the people as many chunks of knowledge as they can handle, at a pace they are comfortable with.
  • It is unkind to give information that someone cannot cope with and does not (yet) want to hear. Remember, though, that you cannot (and should not) prevent appropriate sadness. If people get upset, it doesn’t necessarily mean that they are not coping.
  • Do not give too many chunks of new information at once. If someone asks for a lot of things at once, do give the information, but make sure you repeat it in small chunks as time goes by.

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4. Who can give information?

There can be no rules about who gives what chunks of information. Everyone involved should have a mandate to give new information as and when it seems appropriate, and to help reinforce the information that is already given. This includes not only professionals, but also paid and unpaid carers.

This means that even junior care staff need to have permission to add new chunks of knowledge. They are much more likely than a doctor be asked questions! Family, carers and paid care staff are also in a unique position to assess how someone is processing and coping with the information, and what reinforcements or simplifications are needed.

Sharing information is essential

They can only do this, of course, if everyone shares information with each other. Everyone needs to know what someone has been told, what further knowledge might need to be added, and how the information can be reinforced.

Specific bad news is best imparted by someone with the authority to do so

For example, information about a diagnosis or prognosis may be best given by a doctor in the presence of someone the person knows well and trusts; news about parents divorcing should ideally come from both parents.

Regardless of who imparts the initial bad news, remember that most chunks of information will be best understood in a social context, not in a clinical setting. So even though the doctor may tell someone that he will not get better, the knowledge to support understanding of this will need to be added at home, over time.

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5. Who should be the first to be told bad news?

People with intellectual disabilities are not always the first to know about bad news that affects them – often, they are the last to know. Sometimes this is justified, but sometimes it is not. What if the news concerns the health of someone with intellectual disabilities? Who gets told what, when? A decision to tell someone other than himself first must be justified. It can only be justified if he lacks capacity or if he would be harmed by receiving the news. You have to consider the Human Rights Act and the laws on mental capacity.

This is a difficult area and there are no easy answers. Capacity can be difficult to assess, particularly if you don’t know the person or have little experience of supporting people with intellectual disabilities. If in doubt, you may need help from intellectual disability professionals to assess capacity and to assess the risk that disclosure may be harmful.

Respect for someone’s right to information and privacy means considering their interests first, but it doesn’t mean leaving him without the support of those close to him. It is unkind, perhaps even cruel, to give people bad news when they have no-one around them who can give them on-going support.

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6. How much can someone with intellectual disabilities understand?

Many people with intellectual disabilities, and in particular people on the autistic spectrum, are able to use quite sophisticated words and responses, but may not necessarily understand them. Others may understand much more than you think, but are unable to express their understanding in words. Don’t assume that someone can’t understand, simply because she can’t tell you.

It is not unusual for people with intellectual disabilities to say that they have understood, when in fact they haven’t. Many people will answer ‘yes’ to a question, even if the true answer is ‘no’.

It can be particularly difficult for professionals in a clinical setting (such as a doctor’s consulting room) to assess how much someone can truly understand and cope with. You may not have the time and skill to find out what someone’s level of understanding really is. Help is needed from those who know him well.

Understanding can go beyond words

Someone may not understand that her mother has died, but she will certainly experience her mother’s absence and miss her. Just because she can’t understand or explain something doesn’t mean she can’t know that it is happening. People still need help in coping with the changes.

Some people may not be able to understand factual information, but they may understand the feelings in the room, the atmosphere, the body language. You do not need to hide these feelings from people, but you do have to support them in coping with it.

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7. Can someone be harmed by receiving too much information?

Many people with intellectual disabilities will cope well with being helped to understand as much as possible about their situation. However, some people do not want to know everything, maybe because it would make them feel too upset, worried, frightened or disheartened.

The prospect of someone being upset at bad news is not in itself a good reason for withholding it. Most of us would be upset if we were told that we had a life-changing or life-limiting illness; yet many of us would wish to know this news, and it would be given to us. When, then, is it right and proper to withhold some or all of the bad news from someone? How do we know how much someone should be told?

It is easiest if someone can clearly indicate how much they want (or don’t want) to know. However, even this is not straightforward: when asked a question (‘Shall I tell you more about it?’), many people with intellectual disabilities will respond affirmatively. It is worth testing that response.

If someone is unable to indicate how much they want to know, it is useful to think about the test for capacity: can this person understand, retain and balance this information? If the answer is ‘no’, it may not mean that it is wrong to give the information, but it does mean that it should be given careful consideration.

Understanding the information

If someone is truly unable to understand what is being said, she probably won’t be harmed if you try and explain. It is usually worth trying to explain as much as possible. It is almost inevitable that some of your explanations will not be understood by someone with intellectual disabilities. The important thing is to try and find out how she has interpreted your explanations, if at all possible; and to try and simplify the information, breaking it down in the smallest possible chunks.

However, half-understanding, or consistently mis-understanding, can be very difficult for the person to cope with. Sometimes, the information is simply too difficult to understand, and it may be better not to give it at all. As always, it is best to assess carefully in each situation what is truly in the person’s best interest.

Retaining the information

Giving information that someone won’t remember is not necessarily harmful. It may be important to give it, for example, if it is needed to understand what is going on in the immediate future. However, if the information causes distress and he forgets it afterwards, there is little point (and it could be considered harmful) if it is repeated. You will need to make a decision about the importance of repeating the information. This may be the case, if someone needs a lot of repetition before he understands it.

Balancing the information

This is the ability to understand the implications of the information. It includes the ability to put information into the perspective of ‘time’ and the ability to see ‘the bigger picture’. If someone lacks capacity, in particular the ability to balance the information, only a limited number of information chunks will make sense (‘We are going to hospital now’) but others won’t (‘We are going to hospital tomorrow’; ‘You will die of this illness’; ‘We need to make decisions about where you are going to live’). This is because the person lacks certain chunks of knowledge that would support the understanding, such as:

  • lack of a concept of time
  • lack of understanding that some things are uncertain
  • inability to understand abstract concepts, such as ‘this unpleasant treatment will help me’

An inability to balance the information means that the person may well be harmed by receiving it.

The decisions around disclosure become ‘best interest’ decisions. The person needs to be supported to understand and cope with the immediate effects of the bad news. As time goes on, new information chunks need to be added to help him cope with the changing situation.

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8. Sudden bad news

In the case of sudden bad news, someone will need to make a big jump from one reality to another. This includes sudden bereavement or other sudden changes in circumstance.

There is no gradual way to break sudden bad news. The crucial information chunk (‘Dad has died’) needs to be given immediately, because it is needed to understand an immediate change in circumstance. There is no space and time to build gradual understanding, assess someone’s concept of death or even consider her coping skills. The bad news cannot be ignored; the building of understanding and help with coping will have to come afterwards.

Sudden bad news should be given as a single and simple chunk of information:

  • Simple language
  • No jargon
  • No ‘warning shots’

For example:

It is likely that the full extent and consequences of the bad news will only be understood over time, as the changed reality itself becomes part of a new ‘framework of knowledge’.

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