This methodological paper reviews the research literature and discusses the issues that arise in conducting qualitative research with people for whom traditional methods of qualitative research might present challenges for researchers. The focus is on children and adults with learning difficulties, communication difficulties or other disabilities such as autism with associated complex challenges in communicating, understanding and taking part in qualitative research. The paper’s structure follows the stages of conducting research and includes design, ethics, data collection, analysis and reporting. Both methodological challenges in common with researching other groups (including other so-called vulnerable groups, minority groups and hard to reach groups as well as mainstream participants) and those unique to research with this disabled group are addressed, culminating in guidance for researchers on methods, approaches and key issues. Recurrent themes include: techniques for communicating abstract ideas to participants, enabling participants to express their views and tell of their experiences, ways of acting responsibly and ways of acting inclusively. The review illuminates some of developments in what can be achieved in research with people with learning and communication difficulties and some of limitations in what has been managed to date. The review was commissioned by NCRM in 2008.

/pdf/conducting-qualitative-research-with-people-withlearning-5cujind0jn.pdf

Conducting qualitative research with people withlearning, communication and other disabilities:Methodological challenges

Summary 
We argue that it is important for researchers and service providers to not only recognize the rights of children and young people with learning disabilities to have a ‘voice’, but also to work actively towards eliciting views from all. A set of guidelines for critical self-evaluation by those engaged in systematically collecting the views of children and young people with learning disabilities is proposed. The guidelines are based on a series of questions concerning: research aims and ethics (encompassing access/gatekeepers; consent/assent; confidentiality/anonymity/secrecy, recognition, feedback and ownership; and social responsibility) sampling, design and communication.

Interviewing Children and Young People with Learning Disabilities

We argue that it is important for researchers and service providers to not only recognize the rights of children and young people with learning disabilities to have a ‘voice’, but also to work actively towards eliciting views from all. A set of guidelines for critical self-evaluation by those engaged in systematically collecting the views of children and young people with learning disabilities is proposed. The guidelines are based on a series of questions concerning: research aims and ethics (encompassing access/gatekeepers; consent/assent; confidentiality/anonymity/secrecy, recognition, feedback and ownership; and social responsibility) sampling, design and communication

Interviewing children and young people with learning disabilities*: guidelines for researchers and multi‐professional practice

Summary
There has been a welcome recent shift towards taking account of the views of those who have traditionally been seen as lacking competence, including those with learning disabilities. Innovative methods have been devised to help people express their views and research demonstrates that people with learning disabilities can be taught this skill. However, none of this work has involved people with profound and multiple learning disabilities and serious doubts have been raised about the extent to which it is possible to ascertain the views of this group. Those operating at a preintentional level may not express, or have, views in the usually understood sense. Methods which attempt to ascertain the views of this group are highly inferential and it is often only possible to infer immediate preferences. It is important that the limitations of such methods are acknowledged. A case study is used to demonstrate that, in relation to major life decisions, taking account of a wide range of assessment information may give a clearer picture of the preferences of someone with profound and multiple learning disabilities than subjective interpretations of their behaviour or proxies. This should be combined with a focus on teaching the person so that they acquire as much control over their own lives as possible.

Ascertaining the views of people with profound and multiple learning disabilities

Choice, a concept included in the quality of life approach, is frequently referred to in quality of life and related literature, but its components have not been described clearly Drawing on conceptual considerations and research reports, the authors review and extend what is known about choice, and set out a conceptualization of its two main components: available opportunities and choice-making The most important characteristics of opportunities are breadth and familiarity, and the most important characteristics of choice making are freedom, initiative, and skill The authors consider the application of choice to supports and services by discussing numerous practical issues and providing suggestions for application These are summarized as an overall four-step strategy for moving forward that sets the scene for more specific strategies to be developed and evaluated

Choice as an Aspect of Quality of Life for People With Intellectual Disabilities

In a social and political climate which encourages active participation in decision-making by people who have severe and profound intellectual disabilities, the onus is often on practitioners, care ...

Cecilia Olsson

Papers

See What I Mean: Interpreting the Meaning of Communication by People with Severe and Profound Intellectual Disabilities