Kirsten Stalker

Some Ethical and Methodological Issues in Research with People with Learning Difficulties

ABSTRACT This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in peoples own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for futu...

Children’s experiences of disability: pointers to a social model of childhood disability

The social model of disability has paid little attention to disabled children, with few attempts to explore how far it provides an adequate explanatory framework for their experiences. This paper reports findings from a two‐year study exploring the lived experiences of 26 disabled children aged 7–15. They experienced disability in four ways—in terms of impairment, difference, other people’s behaviour towards them, and material barriers. Most young people presented themselves as similar to non‐disabled children: it is suggested they may have lacked a positive language with which to discuss difference. It is further argued that Thomas’s (1999) social relational model of disability can help inform understandings of children’s experiences, with ‘barriers to being’ having particular significance.

Managing risk and uncertainty in social work : a literature review

* Summary: This review, which draws mainly but not exclusively on UK material, explores the social work literature on managing risk and uncertainty, with emphasis on community care. Risk has become a major, if not over-arching, preoccupation in social work, reflected in a huge upsurge of written material. * Findings: The article briefly traces the historical development of the concepts of risk and uncertainty and identifies a number of theoretical frameworks, noting that the risk society is marked by change, uncertainty, and a reduced faith in experts. Some commentators have drawn out the implications of these ideas for social work. At present, however, we lack a social model of risk. The article describes a continuum of risk management, marked by controlling attitudes at one end and more empowering approaches at the other. The former is evident in risk avoidance strategies, the latter in positive risk-taking; the literature on each is reviewed. * Applications: The views of service users are largely absent from the literature but their role in taking and managing risks on an everyday basis should not be overlooked, nor their potential to play a more significant role in the process. Pointers for future research are identified.

Psychological change from the inside looking out: A qualitative investigation

Abstract Regardless of the type of psychotherapy considered, change is the predominant goal. Psychotherapies differ in their explanations of how change occurs and what it is that needs to change, but pursuing change of something in some way is common. Psychotherapeutic methods, therefore, should be enhanced as knowledge of the change process improves. Furthermore, improving our knowledge about general principles of change may be of greater benefit to psychotherapy than increased knowledge about any particular change technique. This study addresses the questions ‘What is psychological change?’ and ‘How does it occur?’ from patients’ viewpoints. Answers to these questions were sought using qualitative methodology. At the end of treatment, 27 people were interviewed about their experience of change. Interviews were taped and transcripts analysed using the Framework approach. Change occurred across three domains: feelings, thoughts and actions. Participants described change as both a gradual process and an id...

It's a horrible term for someone: Service user and provider perspectives on personality disorder

This paper presents findings from a study exploring the views of people with personality disorder diagnoses and various professionals working with them. After outlining the policy context and the study’s conceptual framework, the aims and methods are described. Interviews were conducted with 12 service providers and 10 users. The main findings are then discussed, including user and provider perspectives on the meaning of ‘personality disorder’ and the strategies and support people use to address their difficulties. Finally, the theoretical implications of the findings are discussed.

Communicating with Disabled Children

Kirsten Stalker and Clare Connors discuss the methods used in a study seeking disabled childrens accounts of their everyday lives. The research is set in the context of policy and practice initiatives promoting communication with disabled children and other recent research, which suggests that not all practitioners and policy makers are meeting their responsibilities in this area. In this study of 26 disabled childrens lives, different interview schedules were used with younger and older children, along with a number of visual aids and activities. The design and effectiveness of these is discussed in detail. Various methods were used to obtain the views of children with communication impairments. The authors conclude that communicating with most disabled children is little different from communicating with any child. Some basic skills are not hard to learn, and attitudes are all important. The methods described here could well be adapted and expanded for use in the field of adoption and fostering.

Eliciting user perspectives on what works

Social care research has moved gradually in recent years to include the subjective perspective. Dementia care, which in many ways is still in its infancy, has lagged behind in this development, and much research has been informed by the carer rather than the person with dementia. As a young subject area, it is right that dementia care should look around for lessons that can be learned from other disciplines. This paper will consider how research with people with learning difficulties has developed a culture for hearing the views of service users. It will outline various methodologies, with considerations of their strengths and weaknesses. The paper will then review research in dementia care which features the subjective experience, and will finally draw out lessons and identify possible ways forward. Copyright

The concept of the learning society for adults with learning difficulties: human and social capital perspectives

In this paper, it is argued that adults with learning difficulties represent a significant marginalized group within society whose experiences may shed light on a range of political and social values affecting those in the mainstream, as well as on the periphery. We begin by considering some possible meanings of the learning society and some features of the social and economic context which have promoted interest in the concept. An economistic reading of the learning society may prove problematic for adults with learning difficulties, since it may be argued that this group is unlikely to be highly productive and therefore will not provide a good return on money invested in education and training. Although an emphasis on social capital may lead to the inclusion of people with learning difficulties, this outcome is by no means automatic since high levels of social cohesion may be based on the ruthless exclusion of those regarded as deviant. Finally, we suggest some ways in which promoting the concept of lif...

Models of disability: the relationship between theory and practice in non-statutory organizations

Drawing on a study exploring the meaning of the ‘learning society’ for adults with learning difficulties, this article examines the relationship between theory and practice in a number of voluntary and user organizations active in the learning disability field. It begins by outlining the ethos of normalization and the social model of disability. Nine out of 10 organizations taking part in the study explicitly or implicitly identified the social model as the main framework for their activities. However, significant inconsistencies in agencies’ accounts are identified at theoretical, policy and practice levels. A number of possible explanations for these findings are examined.

To close or not to close? The future of learning disability hospitals in Scotland

This article deals with the resettlement of people with learning difficulties from Scottish hospitals. First it outlines the policy background, tracing the rise and demise of the long-stay institution. It then reports on a study examining current resettlement policies in Scotland, where there is no national closure programme. The research found that resettlement is largely in disarray, with particular difficulties in planning, financial arrangements and inter-agency collaboration. There is a great risk of hospitals being perpetuated or reconstructed, particularly through the activities of NHS Trusts, and of people with dual labels remaining resident in them for years to come.