VOL: 98, ISSUE: 24, PAGE NO: 39
Katherine Owen, MA, BSc, is a research assistant, Department of Psychiatry of Disability, St George's Hospital Medical School, LondonFor almost 30 years it has been government policy to move people with learning disabilities out of long-stay hospitals and into community-based housing. Research in the last decade suggests that a move to the community is generally linked to an improved quality of life for people with learning disabilities (Emerson and Hatton, 1994). Similarly, personal accounts suggest that the move from institutions into the community has brought positive changes in people's lives (Deacon, 1982; Atkinson et al, 1997).
For almost 30 years it has been government policy to move people with learning disabilities out of long-stay hospitals and into community-based housing. Research in the last decade suggests that a move to the community is generally linked to an improved quality of life for people with learning disabilities (Emerson and Hatton, 1994). Similarly, personal accounts suggest that the move from institutions into the community has brought positive changes in people's lives (Deacon, 1982; Atkinson et al, 1997).
However, some 1,500 people still live in old long-stay hospitals (Department of Health, 2001). By definition, these people include those seen as the most difficult to place in the community, perhaps because they have more severe learning disabilities, complex needs, mental health problems, and/or challenging behaviour. The recent government white paper, Valuing People: A New Strategy for Learning Disability for the 21st Century, states that all these people will move into 'more appropriate accommodation' by April 2004 (Department of Health, 2001).
In this final push to move people from institutions to the community, what are the experiences and needs of the people with severe learning disabilities themselves? Preliminary findings of a study examining this question suggest that important information about people with learning disabilities is lost in the transition. This article describes the study and explores the consequences of such a loss of information. The article also provides practice suggestions for nurses and others who work with people with learning disabilities so that they may offer support to people who are going through such transitions.
In 1999, the Department of Psychiatry of Disability at St George's Hospital Medical School, funded by the Judith Trust, set up a qualitative research study that aimed to gain an insight into the way people with learning difficulties experience the move from an institution into the community. The study has followed the lives of 11 women over a period of three years as they have been transferred from a locked ward of an old long-stay institution into community housing. The main method of research was participant observation, spending long hours on the ward, being with the women, getting to know them and the nature of their daily lives and following them into the community homes to which they had been transferred.
Discussions with staff both in the hospital and community settings took place on an informal basis. It was through such conversations that questions would sometimes be asked by community staff, which then led to information about the women's lives emerging. The women are all labelled as having learning disabilities; some are diagnosed as having additional mental health problems. All are said to have 'challenging behaviour'. The women span the ages of 29 to 75 and most of them have lived in institutional care from early childhood.
Although the study is still continuing, preliminary findings suggest that much that is known about each of the women by the staff who work with them is not passed on to their new homes. One of the women, Christine, who has a severe learning disability and impaired vision, has moved to two different community homes since her departure from the long-stay hospital. At the second home they discovered her case files in the bottom of her wardrobe. The first home in the community obviously had no information about her past, and thus no possibility of understanding her behaviour in the context of her past experiences. Such a lack of information can have devastating consequences.
Why is this information important?
Knowledge about a person's past helps staff to get to know them. It is important for new staff to have a sense of the person who has just moved in and what they value. For example, it is useful to know the particular objects that are important to them, the music that they enjoy listening to, or favourite foods. It is similarly important to be familiar with their histories. This could include information about the family, for example, whether their parents are still alive, whether siblings will visit them, or whether they have children. It could also include information about their close relationships, friends they have spent time with since childhood or old boyfriends or girlfriends who perhaps remain in the hospital.
It can be useful to know where they have lived and worked in their lives, the holidays they have had and the places they have stayed. Such information helps to fill out the picture of a person, and allows staff to see that person in the broader context of their lives. Furthermore, it helps staff to understand unusual or difficult behaviour. There is a danger that without such knowledge a person's actions can be misunderstood, or too easily attributed to their learning disability.
How can information be transferred?
If people are unable to tell their stories themselves, perhaps because of limited verbal communication or no verbal communication at all, it falls on the people who know them best to communicate this essential information to the staff teams in the new homes. Family, advocates and ward staff all have a role in passing on this information.
In this study, the care staff on the ward made efforts to pass on each woman's history. Methods used included 'memory books' and verbal communication between present and future key workers. The memory books included photographs, such as a person's birthday party on the ward, and pictures of things that were important to them. They were made by the key worker of each woman on the ward.
However, the study revealed that although the memory books went with the women to the community accommodation, the new staff seldom looked through them. In one of the new homes a woman's book was unearthed in her underwear drawer six months after she had moved. Moreover, when they were looked through, new staff were unable to talk about the pictures they saw as there were inadequate written details about names of people and places, events and dates. As a result, new staff could not engage with and support the women in remembering their pasts.
In terms of verbal communication between present and future key workers, this occurred during trial visits to the new homes, and links after the move. However, in this study, it tended to happen in an ad-hoc fashion. There seemed to be a drive for a separation between the old and new service, perhaps due to staff in the new service wanting to give the women a fresh start. Unfortunately, such a stance can lead to a breakdown in communication. The staff's perceptions of a person's past life can be positive or negative, but this past remains the lived experience of that person, and as such makes them who they are.
Finally, the information shared was found to be typically descriptive, for example, relaying lists of problem behaviour. This should not necessarily be played down, but it needs to be complemented with what is understood about the context of such behaviour, the strategies that enable a person to feel safe and secure, and the staff's perceptions of what led a person to behave in that particular way in the first place.
- Take or acquire photographs of important people in the person's life. They might include staff and other residents, family members, favourite places, favourite times (for example mealtimes or going to the day centre), significant events (for example, birthday parties or holidays), and treasured objects (for example a tape recorder, a teddy bear, or a picture);
- Make a memory book to include photographs, pictures and text representing a person's life and describing important events and people. The text should explain clearly who is in the pictures, where they were, what they were doing and the date. This enables memories to be shared and past lives to be remembered;
- Current staff or key workers could write a short individual profile, covering information that it is immediately important for new staff to know. This could include a brief family history, a person's preferred method of communication and a thumbnail sketch of their history;
- Old and new staff should endeavour to build and maintain relationships with a focus on the sharing of relevant information and the smooth transition of the person.
Deinstitutionalisation is a life-changing step in the lives of many people with learning disabilities. However, for the women in this study and for other people with more severe learning difficulties and challenging behaviour it is imperative that their stories are shared by the people who know them. Although important issues of confidentiality can deflect this impulse, staff should be assisted to proceed in a thoughtful way, so that people with learning disabilities and complex needs can be understood.
Given the importance of the dissemination of research, we will be featuring a follow up to this article in which Katherine Owen will report on the overall conclusions of her research and how this was communicated to the clinicians and carers involved.
- For further information about this programme of work contact: Katherine Owen, Department of Psychiatry of Disability, St George's Medical School, Jenner Wing, Cranmer Terrace, London SW17 0RE. Tel: 0208 725 5501; e-mail: email@example.com