A report on the factors, which influenced the development of a life story, of an individual with learning disabilities.
In compilation of this essay the author has taken every measure to preserve the confidentiality and identity of all service users that have been referenced to.
With the ongoing process of deinstitutionalisation the importance of a resource such as life story work, becomes increasingly apparent to the lives of people with learning disabilities (Hewitt 2000, Hussain & Raczka 1997). Throughout its compilation, whichever method is chosen, the fact that it empowers and recognises the uniqueness of an individual and provides a sense of continuity is unquestionable (Hewitt et al 1997). With this evidence as a foundation the author will attempt to discuss the origins of life story work, the rationalism for his choice of client, the content of the life story work, any techniques utilised in gathering material accompanying advantages and disadvantages of such techniques, furthermore offering essential supporting evidence throughout its entirety.
In the United States during the late 1960’s life story work was originally used with adopted or fostered children with the aim to reduce a child’s fantasies about their past thus enabling them to come to terms with their history and reality (Hewitt et al 1997). They have also been employed with children who have life-threatening illnesses (Hitcham 1993), parents suffering from AIDS have utilised life story work (THT 2002), along with the exploration of reminiscence work and bereavement issues (Read 1999). In the early ‘nineties’ life story work was introduced to the field of learning disabilities (Hewitt 2000) identifying a need, in the light of deinstitutionalisation, whereby life-story books tackled the problem of information being misplaced as people move from one care setting to another (Hewitt 1998). More recently Hewitt (2000) has completed research with the more severe learning disabled consequently identifying a group largely previously ignored.
Hewitt (1998) defines a life-story book as, "... a document of a person’s life that incorporates personal stories and experiences" and goes on to add, "These are supported with photographs and any other relevant memorabilia". Hussain and Raczka (1997) support this definition and enhance it by adding that more factual information could be included. Preceding methods of presentation have also incorporated letters, drawings, family trees, birth certificates, newspaper headlines of the birth date, audio cassette and video (Hewitt 1997, Hussain & Raczka 1997, Hewitt 1998). The writer manipulated a number of these processes during his work although the use of video was dismissed instantly due to ethical and consent issues. Whilst seeking for originality of work the author also recognised that some direction was needed therefore he ‘loosely’ based his work on the Hussain and Rackza (1997) life story pack, but generating a newsletter not a heading to commence each particular section of the life-story book.
Serious deliberation was required when considering a suitable client to approach for participation in a life story work. The element of consent became the initial issue to achieve with the client the author had supplicated due to his fluctuating capacity. Colin, not his real name as to protect his identity, has a learning disability and suffers with schizophrenia therefore his delusions have extensive consequences on his ability to consent (James et al 1996). The author followed the recommendations of Arscott (2001) and Dimond (2001) who agreed that in such circumstances the capacity to consent should be sought in relation to the particular decision at the specific time that the decision is to be made. Arscott (2001) proposes that this ‘functional approach method’ proves to be time consuming and a practice that is not often pursued; nevertheless it is an approach the author perceived as significant if Colin was to engage in a life story.
Negative symptoms of schizophrenia include reduced eye contact, the desire to communicate diminishes and little attempt is made to initiate conversation (James et al 1996). Bradshaw (2001) argues, that staff conversational interactions are infrequent and then typically functional instead of social, detecting very few positive exchanges with the majority of utterances being directive. Therefore the determining factor in selection of client was the authors understanding that a life-story book could be developed into a communication tool as we need to make connections in an attempt to re-establish some measure of reality (Crowe & Alavi 1999, Hewitt et al 1997).
Prior to considering methods to be utilised during the gathering of material we must initially explore ethical issues concerning the work we are about to commence. Colin’s consultant psychiatrist voiced his concerns with regard to the exposure of certain aspects of his life that he had previously found difficult to cope with, the result being a possible deterioration of his mental health. McCarthy (1998) offers support for this approach signifying that some areas of our lives are to sensitive and private to be disclosed. In contrast Bornat (1993) cautions against the slant to celebrate the past suggesting that we should acknowledge that memories could also bring pain. Hussain & Raczka (1997) state that, "Perhaps one of the greatest benefits of Life Story Work is the fact that it adopts a person-centred approach where the client decides on what to include/exclude", however ethically challenging if we were to follow the advice of his consultant then Colin was going to have ‘limited access’ to his own information, nevertheless, the disadvantages of a deterioration in his condition far outweighed the advantages of a life story work. After personally observing the progress Colin has achieved the author took positive steps throughout the process to respect the advice of the consultant.
The life-story book itself was presented in an A4 ring binder with all the information placed in clear plastic pockets with each section clearly divided thus enabling easy addition whenever the need arose. Although not a very original concept it keeps costs to a minimum and is very effective form of presentation (Hewitt et al 1997) allowing him to reveal only the sections he chooses. A recent photograph adorned the opening page followed by a family tree going back to his great grandparents compiled by his mother. Each section began with a light-hearted biographical ‘newsletter’ created by the author and agreed with Colin beforehand. Other material included photographs from his childhood including his family home and schools; a newspaper type article with births, deaths and news from the day of his birth; a local road map with the homes of his family identified; art and literature work he had produced; written statements and photographs from people who he had worked alongside; covers from prominent magazines he read along with memorabilia from holidays, visits to places of interest and finally his passion of vintage commercial vehicles were all accredited.
Effective communication is an essential skill for all nurses (Flynn & Ricca 2000) and particularly for those undertaking a life story work. The principal method of information collection for a nurse is through interview (Holt 1995); however as the author discovered, regardless of how effective our communication skills are, without thoughtful preparation prior to interview our inexperience can be exposed. The writer had developed a good working relationship with Colin’s parents whilst on escort duties during home visits which led him to believe that an informal, relaxed interview in familiar surroundings would be more pertinent for preliminary dialogue. A brief discussion with regard to the background and validation of life story work along with possible material they may be in possession of, which could be incorporated, was the writers initiative for the first meeting; whereas, the parents had prepared themselves for a more ‘question and answer’ style encounter leaving him conspicuously ill-equipped. Astedt-Kurki et al (2001) says, "The researcher needs to plan carefully gaining access to the family and how to start the interview", while Holt (1995) accentuates that such skills, "...are learnt from experience", statements which the author commends to the reader. Astedt-Kurki et al (2001) submits that subjects are more likely to be willing to participate whilst in the comfort of their own home and this materialized in subsequent interviews with structured closed (for factual information) and open (allowing a fuller range of answers) questioning (Adams & Bromley 1998) resulting in a more productive outcome. This seemed to be the preferred approach of his parents and whilst advantageous in the amount of material made available the implications of travel costs, time spent participating in ‘general conversation’ and his parents viewing it as opportunity for an extended home visit, being the resulting negative aspects.
For his following interview, with fellow health care professionals at an assessment unit, the author’s preparation was more thoughtful and comprehensive, organising himself with a list of questions he desired answering but allowing for a more relaxed informal conversation if that’s what the situation necessitated. Colin had attended their service for over a year and the writer was keen, after gaining consent from Colin to approach them, to gather positive aspects of his time spent there. Comparable skills are needed whilst communicating with fellow professionals as with any other group, with the possible addition of gaining credibility by knowing the facts and accepting the validity of others (Flynn & Ricca 2000). To cover the points he had highlighted the interviewer allowed thirty minutes, however it was instantly apparent that this would be inadequate due to the warmth and respect shown from the staff and reciprocated by the interviewer in relation to Colin. Grensing-Popal (1997) possess concerns that, "Sometimes we’re so in tune with our thoughts and the need to express them that we don’t listen to what others are saying" and goes on to add, "Make a conscious effort to pay attention and respond to the speaker to verify your perceptions", nevertheless neither issue materialised. A mutual respect in combination with a common interest in the welfare of Colin resulted in an advantageous discussion for both parties, the author gaining valuable insight whilst his previous carers had the reassurance that his progression had been maintained and enhanced. The only shortcoming being that over ninety minutes had passed, far exceeding his original time allocation resulting in a rather abrupt termination of the meeting without the interviewer offering contact details. Astedt-Kurki et al (2001) suggests that we have an obligation to make contact details available consequently the author made an apologetic phone call later that day to rectify the situation.
McEvoy et al (1990) and the FPLD’s (2002) research found that leisure pursuits amongst people with learning disabilities are usually passive and solitary, often consisting of segregated activities and catering for groups rather than individuals. All of which contests the directives of the DoH (2001) ‘Valuing People’ white paper whose objectives are for a more community integrated range of pursuits. Many of Colin’s interests do not fall into these research findings; his rather individual and active interests require a little more imagination with regard to organisation and participation. It is here where difficulties arise whilst gathering material during the pursuit of his interests for inclusion in his life-story book. His duel diagnosis prevents him from initiating the pursuit of his leisure activities more willingly relying on staff to facilitate suitable venues, this being a common occurrence amongst this client group (James et al 1996, Beart et al 2001). Colin needs to be offered as much choice and control as possible (DoH 2001) therefore Arscott (2001) and Dimond’s (2001) proposal with regards to consent was further exploited whilst seeking his approval of suggested activities. As before the only other disadvantage to the pursuit of an activity such as this are the cost implications. With the principal obstacles discussed we can begin to examine the advantages of such a social integrated activity (vintage commercial vehicle rally) from a client/carer prospective.
Social integration enhances the relationship between family members (Peniston 2002) thus promoting opportunities for better-quality communication and we can suggest that in the framework of a residential setting ‘the family’ could incorporate fellow service users and staff. Whilst pursuing his chosen leisure activity and amongst a socially integrated setting we have the potential to move through his mental distress and make significant connections. Photographs, souvenirs and entrance tickets gathered at such an event and incorporated into his life-story book can help to recreate these connections. Colin’s knowledge of vintage commercial vehicles is exceptional and once engaged in conversation about this subject we have the opportunity to re-establish him within the community of others (Crowe & Alavi 1999). With so much of the information we have about people being of a functional and clinical nature data such as this gives us an insight to their personality, reveals their uniqueness (Hewitt 1998) and not their condition, allows for validation of their of their experiences (Hussain & Raczka 1997) and emphasis’s the positive aspects of their life (Hewitt et al 1997).
It is well documented that people with learning disabilities are a valid source of information about their lives (McCarthy 1998) however because of Colin’s communication difficulties and mental health problems this would be a resource principally unexploited. Another concern for the author was the possibilities of creating a state of acquiescence whilst in discussion with a susceptible client an issue raised and recognised by Billiet and McClendon (2000). The author was keen to match his communication skills with the needs of Colin whilst explaining the principles of life-story work while acknowledging James et al (1996) observations that conversation can remain obscure despite all attempts at clarification. Nevertheless during one meeting the conversation lasted for over thirty minutes with Colin expressing his wishes vehemently with regard to material he wanted incorporated. His enthusiasm failed to materialize in subsequent interviews and many were terminated by his sudden exit from the room however the author perceived this as an expression of his autonomy and respected him for that. Much of the information came from intermediary sources all of which was made available to Colin for him to scrutinise for inclusion consequently highlighting ownership.
Hewitt et al (1997) along with Hussain and Raczka (1997) share the belief that life-story work gives people a chance to highlight their achievements and individuality, it can be, "...instrumental in getting to know someone" (Hewitt 1999), it gives carers the opportunity to see the person beyond the care plans and can be an aid in communication (Hussain and Raczka 1997) details hopefully not lost in Colin’s book. Earlier the author detailed his rationalism for choice of client and as yet the temptation to introduce a care plan to answer his hypothesis has been resisted due to the contradiction to the principles of life-story work (Hewitt 1999) however some indication of achievement/failure would be interesting.
Hussain and Raczka (1997) warn against the possibility of revealing unresolved issues a concern of the consultant at the commencement of the life-story work and one noted by the author throughout his involvement that failed to materialise. They also add that life-story work, "...encourages people with learning disabilities to build relationships..." and in the authors opinion this was the overriding success of the exercise. Colin rarely addressed anyone by his or her Christian name preferring to gain their attention by the use of pseudonym usually "Reg" for the author however by the end of their work together he was always address by his Christian name. Making such positive contact with Colin was perceived as a major breakthrough by the author and one that was recognised by his staff team. This evidence along with the process being an educating and liberating experience for all involved (Hussain and Raczka 1997) is offered to the reader as validation of life-story work.
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