Using Life Story Books to Support People with Intellectual Disabilities Who Have Been Bereaved

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Linda McEnhill explains that a good LSB will offer the essential elements of communication, information giving, identity building and attention giving to those with an intellectual disability.

Background: Described by Fahlberg as ‘…an account of a child’s [person’s] life in words, pictures, photographs and documents, made by the child [person] with the help of a trusted friend [helper]’ (Fahlberg 2012), life story books (LSBs) originated in adoption and fostering services as a tool to build the child’s sense of personal identity, and thereby to support their ability to deal with crisis and change. LSBs have more recently been used in elderly care services with the aim of helping a person to retrieve and maintain memories and thus retain (rather than build) their sense of personal identity.

In intellectual disability services LSBs have been in use for more than a decade where their primary focus is to communicate the ‘story’ of a service user in the context of their family and friends and in this way to enable staff to have a better understanding of the individual with whom they work. In some settings this aim has been undermined by scant attention to detail, such that it seems that all individuals within a service share the same ‘life-story’ with just different photographs. However a good LSB will offer the essential elements identified by Ryan and Walker of communication, information giving, identity building and attention giving.

Whilst the compilation of an LSB in an intellectual disability setting might have a therapeutic outcome this has not been their primary focus. By comparison in pre and post bereavement care a number of ‘therapeutic’ narrative approaches have developed, including structured life reviews, but the use of LSBs is relatively rare. In the case of a bereaved person who has an intellectual disability, however, LSBs can be a tool which can enable staff to support people to deal with their loss on a number of levels. Perhaps this is because, as Ainsworth & Speck (1982) suggest,

‘At every point of life that involves growth there seems to be a need to look and feel backwards, as well as forwards, as an essential ingredient in managing the change successfully.’

Bereavement theory: To be able to utilise LSBs to respond to the bereavement experience of a person with intellectual disability, the supporter needs to have a basic understanding of both ordinary and complicated grief. A straightforward model is found in Worden’s Grief counseling and grief therapy (2009), where the author suggests that there are four tasks of ‘grief-work’, to:
1. accept the reality of the loss,
2. feel (or process) the pain of the loss,
3. adjust to an environment in which the deceased is missing, and
4. find an enduring connection with the deceased in the midst of embarking on a new life.

Whilst LSBs can be a useful way for care-workers or family members to support a person who is experiencing a normal (albeit painful) loss, such work is not recommended with individuals who are experiencing a complicated bereavement; in this circumstance helpers will require a primary training in counselling or psychotherapy to support the person effectively. For anyone who is undertaking the bereavement support of a person who has an intellectual disability, it is useful to have an identified person who can provide support and supervision to the helper which protects both them and the bereaved person (either of whom may find their previous losses reactivated by the LSB process).

Specific issues for people with an intellectual disability: There are a range of issues specific to many people with an intellectual disability which may impact on their bereavement experience and which, therefore, require attention:
■ The socialisation and cognitive ability of the bereaved person may inhibit their full understanding of death such that the person may not understand that death is permanent, inevitable and universal. This is more likely if the person has lived most of their life in an institution or have been ‘over-protected’ from death and dying.
■ Despite this, people with intellectual disabilities have been found to continue to think about, mourn for and dream about people who have died over long periods of time. One longitudinal study showed that people continued to dream of deceased people for 10 years or more (Turner & Graffam 1987).
■ Sadly still too many people with intellectual disabilities are prevented from involvement in the rites of passage of those that they love. This may complicate their grief, make it harder for them to understand the dying process or to understand anything of what is happening.

It is perhaps for these reasons that Kitching (1987) would suggest that there are three essential elements to the bereavement support of a person with an intellectual disability:
1. Explanation,
2. Facilitation, and
3. individual plans to meet the individual needs of the mourner.
If nothing else, the process of developing an LSB over a period of time should offer individualised attention and the ability to address each of these elements of bereavement support.

Benefits of LSBs in bereavement work with people with an intellectual disability: There are a number of potential benefits of this work which include the opportunity to:
■ Overcome the paucity of stories which the person has to communicate about their life and which might impact on their own self-understanding or on how people respond to them, their life experiences and losses,
■ Gain insight into the person’s previous experience of loss (not just deaths), their ‘stage’ of grief and whether such losses have been fully understood and/or resolved,
■ Educate/explain about death and dying,
■ Give a sense of structure and focus for bereavement conversations ( which might otherwise seem daunting)
■ Use the material of the LSB to give a non-threatening, concrete prompt into abstract thought which is especially useful for people who have impaired concentration,
■ Ensure that the deceased is actually remembered as part of person’s unique story after present carers have moved on,
■ Process difficult issues with the aim of reframing them for incorporation in the client’s self- understanding, life-story,
■ Record the bereaved person’s life so they can revisit this in new situations/environments,
■ Give a future focus – which is highly important in bereavement work,
■ Develop a concrete ‘record of achievement’ of the bereavement work undertaken.

Structuring the LSB sessions: Consideration needs to be given to a range of issues prior to beginning the LSB work, these include:
■ Negotiation of confidentiality as well as what feedback will be expected from the helper,
■ The helper knowing what they want to ‘know’/explore – whilst simultaneously keeping an open mind to hear something never expressed (or never heard) before,
■ Remembering that chronology takes time! (So information needs to be kept in a manner which can be given order nearer to the completion of the LSB. This will aid the winding down or review of the work undertaken.)
■ Working at the person’s pace—being willing to go slow, to keep it light or deep as the person direct; Being willing to take as long as the person needs,
■ The use of lots of different methods to get the same information according to where the client is, e.g. family trees, life graphs, feelings cards, photographs, visits to places and people,
■ Taking copies of documents and photos and keeping them safe until the completion of the LSB,
■ Being directed by the person as to what is written down and what is not, as well as considering how important is ‘factual accuracy’? Is it more important than the person’s ‘believed story’? When there is a choice, how will the helper and person decide?
■ Helping the person to think about what they want to say about the sessions to anyone who asks. (Sometimes the person will need to be helped to develop a ‘cover story’ that they can use when people ask for more information than the person is willing to give.)
■ Helping the person to be assertive about ownership of and access to the LSB.

When should a LSB not be made?: Inevitably there are times when an LSB should not be embarked upon, these include:
■ When a ‘therapeutic alliance’ (trusting relationship) has not yet been established between the bereaved person and the helper,
■ When the helper is not able to see the process through to completion,
■ When the helper is not able to guarantee client ownership and confidentiality of the LSB,
■ When the bereaved person feels more vulnerable at the prospect of the compilation of the LSB. In this situation the process might still be very helpful for the person, but for whatever reason they may not wish to complete the product part of the intervention, this needs to be respected.
■ When the bereaved person does not want to participate.

Limitations of LSBs: No tool is without its limitations including LSBs. It can be hard to assess the level of complexity that is likely to be involved at the outset of the process and it may be a challenge to manage this in a way that is helpful (and understandable) for the bereaved person. However, the complexity is probably inherent to the situation, rather than the tool, and the attempt to clarify elements of this is likely to be helpful (for both helper and bereaved).

For those bereaved people who do not read, a constant challenge to helpers is not to be dependent on the written word. They may need to seek support from other colleagues such as speech and language therapists or art therapists who are able to communicate more creatively. In these situations we need to remember that memory involves all our senses and therefore music, fabrics and perfumes may stimulate important elements of the story, more than words either spoken or written.

The tool is only as effective as the person who uses it and therefore it requires a high commitment on the part of the helper to utilise all support and learning to ensure greatest effectiveness. The temptation always is to concentrate on ‘product’ rather than ‘process’, not least because this is the part that colleagues and family carers are able to interrogate so it requires.

Can it hurt?: So long as the helper is guided by the bereaved person, works at their speed and is tentative about projecting their own interpretations of the bereaved person’s story whilst being ferocious in protecting the privacy, confidentiality and primacy of the bereaved person’s construction of acceptable meanings then the LSB should only benefit. It is worthwhile remembering that in seeking to aid the healthy resolution of the bereavement process the helper will seek to:
■ Acknowledge the loss and grief and empathise with the experience,
■ Facilitate the healthy expression of this grief (through inclusion and giving understanding),
■ Help with individual meanings, looking at the early strengths and previous losses of the bereaved person and exploring their personal story line,
■ Help the bereaved person to say complete goodbyes to the deceased,
■ Overcome specific barriers to resolution of grief be they inadequate death concept, fear, communication difficulties or exclusions,
■ Help to give concrete conceptualisation and expression,
■ Help to reinvest in life and new relationships.

Final thoughts: We began with Fahlberg’s definition of an LSB and perhaps in justification of the enterprise of making LSBs, the final word also belongs to her:

‘Every individual is entitled to his or her own history’ and ‘It is never too late or too early to make a Lifebook’.

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