132 . British Journal of Learning Disabilities Vol. 26 (1 998)

Doing Research with Lonely People

Wendy Booth, Research Fellow, Department of Sociological Studies, University of Sheffield. -

Eleven years ago Wendy Booth was involved in a research study that looked at the effects of relocating people with learning difficulties from long-stay institu- tions into less restrictive accommodation. She became friends with one of the women who was moving from hospital and they still see each other often. Two subse- quent research studies have also left a legacy of people who phone or write to her on a regular basis. This paper addresses the ethical implications of including lonely people as partners in research.

Introduction Becoming friends with Sophie was not something that

happened overnight. We met one Saturday afternoon, in 1987, in a hospital tearoom when I, as a researcher, accompanied her mother on one of her weekly visits. Sophie had been named in a community care plan which aimed to move her from hospital to a hostel in her home town. My job was to find out what her mother felt about this plan. As we talked I realised I would also like to know more about Sophie, a spirited survivor of 22 years of institutional life.

After Sophie settled into her new home we began going out now and then for a drink or a meal. We fell into a routine of ringing on certain days and slowly our friendship grew closer as we got to know each other better. Later on she started coming to my house for tea and occasionally sleeping over. We have chosen to remain friends to this day.

Our continuing relationship no longer has anything to do with my work but it did forewarn me of what people like Sophie might expect of me as a researcher and how I must be prepared to give as well as take.

Over the past few years researchers have been encour- aged to rethink their approach in order to include their informants as active participants in the research process. People are no longer invited just to answer questions. They are given the opportunity to become partners, con- sultants, advisers and even interviewers. Ward (1997) says that including people in research has proved to be empowering and emancipatory for them, while actively promoting their interests and enhancing the quality of the projects.

A few researchers have written about the way par- ticipatory methods might be applied when involving children, older people, and people with learning dif- ficulties (Atkinson, 1993; Ward, 1997; Whittaker et al.,

1990). While work done this way is recognised as being potentially beneficial to both researcher and researched, the implications for what happens to participants when the fieldwork comes to an end have not been so openly acknowledged, especially in the case of people whose experiences have left them lonely and sensitive to rejec- tion.

Every researcher brings to their work a set of moral values based on their own beliefs about right and wrong. For me, participatory research with people who have learning difficulties is not simply about enabling their inclusion but also about living up to the longer-term commitment that such a stance might bring.

My Experience Since meeting with Sophie, I have been involved in

two projects which required me to develop an alliance with parents who have learning difficulties.

The first project, which commenced in 1991, provided a parents’ view of parenting using the life story approach. The study design involved depth interviews and occa- sional trips out with parents over an 18-month period (Booth & Booth, 1994).

The second project, ’Parents Together’, was an active research project aimed at developing advocacy support for parents with learning difficulties (Booth & Booth, 1998). As part of this project I became an advocate for nine parents. Participation by the parents again con- tinued for 18 months and throughout this time I was in contact with them three or four times a week.

In both projects, withdrawal was very carefully man- aged, especially in the second project, where an exit strategy was worked out with the parents during the last four months of the fieldwork to make sure that support systems were in place once the advocate withdrew.

By the end of these two projects, four people had decided to stay in touch with me - Anne, Betty, Carol and Emily. We have been in contact with each other now for seven years.

These four women’s experiences are not unusual. Their lives run parallel with those of other lonely women living in poor neighbourhoods who likewise endure abuse by men and fragile friendships with people who often exploit them. However, it is usually the strength or absence of an individual’s personal support network that deter- mines whether or not they seek continuing contact with a researcher.

British Journal of Learning Disabilities Vol. 26 (1998) . 133

Having learnt how others had demeaned these women or had used them for their own purposes before casting them aside, I soon realised that if I wanted to avoid simi- larly exploiting them in the name of research then I would need to demonstrate that we had equal access to each other.

The Four Women Anne

Ln 1991 Anne lived with her husband and adult daugli- ter. She had overdosed on a couple of occasions and later moved into a hostel for people with learning difficulties. She eventually secured her own flat where she now lives alone with paid support. From our first introduction, Anne used to ring me at home every other day over a two-year period. I knew all her immediate family and had been invited to numerous celebrations and other events. By the third year she was still phoning and send- ing cards but not so regularly. I rarely initiated a call after the project ended but I would always ring her back if she had phoned and left a message. This contact had grad- ually diminished until now, seven years on, she rings me only when something special has happened to her.

Betty Betty is Anne’s daughter. Sexually abused and raped

by male members of her family and a number of other men, she was a lonely and deeply unhappy young woman who still sought emotional fulfilment with a man. After overdosing four or five times, she moved out from her parents’ house to live in a hostel for people with mental health problems. I have known Betty as long as her mum and she has phoned me at home on a great number of occasions. Like her mother she also sends cards and sometimes letters which I always answer. The phone calls increased after she married and had a baby when she found herself under surveillance from Social Services. Now she has found contentment with her hus- band and child and she will just have a chat when her mother phones me.

Carol Carol had been taken advantage of by a number of

men and raped twice. Her only child was placed in the care of her sister. She lives alone and has overdosed periodically over a long number of years. Even during the second project Carol never phoned my workplace, always choosing to ring me at home in the early evening from a call box. I am unable to ring Carol at home but I have occasionally invited her out for a meal so that we can catch up on our news. This contact will probably stay constant in the years to come.

Emily Emily has been victimised for most of her life. In 1991,

she lived with her husband, two sons and a daughter on a large, low-income estate. Social Services later moved the family onto another hostile estate and then closed their file. Emily used to phone me frequently at home from the beginning of the first project until her phone was removed and then once ,a fortnight from a call box right up until the second project started five years later. Emily always asked for help and, when things became

unbearable for her and her family, I used to call on them to try and ease the situation. Nine months into the advo- cacy project, in 1996, her husband killed himself. From that point I knew that the responsibilities I now faced had become much more than I had committed myself to at the beginning. As the project drew to a conclusion, Emily and I agreed to write to each other. But when Emily continued to ring me, I began to examine my moral stance as a researcher and my moral dilemma as someone who had begun to feel pressured by her daily phone calls asking me to visit. When she finally had her own phone installed, seven months after the project ended, and rang up to three times a day, I wrote her a long letter and talked about what we had agreed. I said I would not be phoning or calling on her but I liked writing to her and hearing her news when she wrote back. I knew she was still lonely but I also knew she had recently moved close to her family who gave her a great deal of help along with a support worker, a disability social worker and a community nurse. The time had come for me to set the limits on my involvement.

All four women live over 20 miles from my home and still ring and write to me. Anne and Betty’s phone calls had once felt equally as difficult to manage as Emily’s but slowly, over the years, they had become less one- sided and more reciprocal in content. Carol has been the exception as she rarely asks me for anything and would much rather tell me about happy events.

The Ethical Role of the Researcher Researchers needing to get close to people taking part

in their study find themselves in a predicament. They have to look for ways of getting to know and include people while keeping them at arm’s length to avoid rais- ing their expectations of a continuing relationship. There is an essential difference between friendship, which is based on mutual choice, and being friendly: a difference that is sometimes too subtle for lonely people to recog- nise.

Being honest about the nature of the project will not prevent people from seeing it differently. As researchers, we choose our research topics, the people we wish to include in them and our time limits. The above examples show that we need to consider what we are prepared to do when people in turn choose us.

Knowing how to respond is a quandary for all social researchers unable to push aside people who are living desperate lives. Even when agreement is reached over contact it can have little effect. Phone calls can come at all times and often inconvenient times. Some people’s hold on life is so tenuous that they need to talk about all the nasty things that keep happening to them, and they know the researcher will listen. Participatory research will always be about more than just including people as, by its very nature, the process of involvement compels the researcher to become part of their lives too.

Lonely people‘s expectations are raised when new possibilities are introduced which offer them a way out of their loneliness. Research is time limited but explain- ing this reality will make little difference if people want to stay in touch. It is easy to talk about participatory research but the fact is the relationship often does not end with the research. Researchers who elect to do this

134 . British Journal of Learning Disabilities Vol. 26 (1 998)

kind of work from a principled stance must also accept the lengthy commitment i t might entail. By creating opportunities for empowerment, a researcher must be prepared to accept that some people will, as a result, choose to use those opportunities in ways that may not always be convenient or welcome.

Over a period of time some people might relax their hold, but complete severance may never happen. The more that people with learning difficulties assume responsibility in the research process, the harder it is for both sides to say goodbye. This might be seen as a favourable development in human terms but the ensur- ing obligations need serious consideration by anybody thinking of setting off down the path of participatory research. The reality is that 11 years on from the first project, I am still contacted by, and in contact with, five women who chose to attach their own ’terms and condi- tions’ (Stalker, 1998) to their participation in my research.

References

Atkinson, D. (ed.) (1993) Past Times: Older People with Learning Difficidties Look Back on Their Lives. Private publication, Milton Keynes.

Mothers and Fathers zuith Learning D#iciilties. Buckingham: Open University Press.

Learning Difliciiclllties. Brighton: Pavilion Publishers/Joseph Rowntree Foundation.

research with people with learning difficulties. Disability and Society 13 (l), 5-19.

Yoring People in Research and Developnzent Projects. York: Joseph Rowntree Foundation.

Evaliiation by People with Learning Difficiilties. London: The King’s Fund Centre.

Booth, T. and Booth, W. (1994) Parenting Under Pressure:

Booth, W. and Booth, T. (1998) Adz)ocan/for Parents with

Stalker, K. (1998) Some ethical and methodological issues in

Ward, L. (1997) Seen and Heard: hvo lv ing Disabled Children and

Whittaker, A., Gardner, S. and Kershaw, J . (1990) Service

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