Communicating about bereavement
Since more than 50% of people with learning disabilities have some form of communication difficulty (Kerr et al 1996), carers need to be aware of the importance of using effective communication, allowing time for the person to digest the information and repeating information often. Alternative methods of communication such as drawings or photographs and pictures may well be very useful.

When breaking bad news, Buckman (1991) offers a six-step protocol or framework that has been usefully related to people with learning disability (Read, 1998). This protocol includes:

1. Getting started, involves finding an appropriate place or venue, this should be private, comfortable, and if possible, familiar, and ensuring sufficient time.

2. Finding out how much the person knows and understands about the situation. This might involve asking questions to explore understanding and using the leaflets to empower the individual to ask appropriate and meaningful questions. Whilst many individuals with learning disability have limited experience about death, McEvoy (1989) believes that they do have an understanding of the concepts of death (Read, 1998).

3. Finding out how much the person wants to know, although some people may not want to know the details surrounding the event, they do have a right to be told when someone has died.

4. Sharing the information, at the individual's own pace and communicating in a way that the individual is likely to understand. The person should be provided with the basic facts, using language that is truthful and cannot be misunderstood, e.g. the person should be told that a relative/friend has died, not that the relative has left. Otherwise, the person may be left searching for the loved one.

5. Responding to the individual's feelings, by recognising and evaluating responses, offering constructive and reflective feedback, and working at an appropriate pace.

6. Planning and following through, which involves informing appropriate others.(After Buckman, 1991, cited in Read, 1998)

Carers may be reluctant to inform individuals about bereavement if they have a history of challenging behaviours, for fear of inappropriate responses. Whilst recognising that such challenges may prove problematic, all individuals have the right to know about the death of their loved ones, and planning around staffing issues, immediate and ongoing support is crucial in these circumstances (Read, 1998).

There are many resources and environments, which enable communication to become effective, such as reminiscence work, life books, symbols, Makaton and a snoezelen setting. It may be relevant to refer to other professionals for advice, e.g. Speech & Language Therapy and professional counsellors. . Carers should also provide information about the bereavement to other agencies involved with the person (consent permitting), enabling those staff to contribute to the ongoing communication when appropriate, thus providing consistency for the person. Care staff need to be told exactly what words and symbols have been used to explain the death in order to avoid confusion.

Communications may be difficult for many reasons (e.g. limited cognition, minimal verbal language and incongruent non-verbal communication and carers need to be creative in using appropriate resources. These include reminiscence work (Stuart, 1999) and memory games to talk about the past. Although it is difficult, it is essential that the person be supported at this difficult time to prevent future problems occurring.

One element of communication is that of making choices and decision making. Some of the choices following a bereavement can be difficult, and people with a learning disability need to be given the appropriate information using language that they understand to help them make choices. We all find these choices difficult and often want to change our minds. People with a learning disability need to be reassured that it is all right to change their mind. Even though it is all right to change their mind, some events have a cut-off point when it is too late, e.g. being able to view the body or go to the funeral (once the funeral has taken place it is too late to say they will go after all). Such choices are reflected in the accompanying leaflets. People need to be reassured that whatever choices they make, it is all right with the staff, and they will be given help and support to carry out these decisions, wherever feasible and possible. One choice they may have to make is whether they wish to see the body (as mentioned above). For those individuals who wish to view the body, further preparation is important. Individuals need to know that the body will not look the same, it will feel cold, the body will not be breathing, and that the body will be in a box called a coffin.

Supporting people with learning disabilities may mean that carers need to be creative in order to access the bereavement world of the person in order to understand and appreciate their needs.

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