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Ethics case study: Fulfilling lives?

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Ethical Issues in participatory research exploring the use of leisure time by people with learning disabilities

Description of the project

Fulfilling Lives is a collaborative research project involving Gateshead People, a self advocacy group run by people with learning disabilities for people with learning disabilities, and researchers from Durham and Northumbria Universities. The project was commissioned by Gateshead Learning Disability Partnership Board that aims to improve the lives of people with learning disabilities by ensuring that they have rights, choice, independence and inclusion. The research was funded by Beacon Northeast, a partnership between Durham and Newcastle Universities committed to supporting and promoting public engagement by undertaking research together with experts by experience from outside the academic world.  

The 'research problem' concerned the use of leisure time (in the evenings and at weekends) by adults with learning disabilities who were faced with a limited range of opportunities and little choice about how they spent their leisure time. A steering group of people with learning disabilities and their supporters, practitioners and managers of learning disability services, academic researchers and representatives of Beacon Northeast was formed to guide the research process. The following research questions were developed: i) what do people with learning disabilities do in the evenings and at weekends? ii) what would they like to do? iii) what stops them from doing the things they want to do? We addressed these questions in two ways.

First we organised an activity day that was attended by 115 adults with learning disabilities. A wide range of participatory methods and person centred techniques was used to work with small groups and individuals to understand their preferences for the use of leisure time as well as the day to day reality of how their leisure time was used. The second stage involved in depth work with a sample of ten men and women with learning disabilities. Two people with learning disabilities were supported to develop research skills and we followed a model of co-research with learning disabled and academic researchers working together. The ten participants, aged between 26 and 63 had a range of physical and communication support needs and lived in a range of different circumstances: independently, in supported housing, with family and in residential care. Participants took photographs to make a record of their use of leisure time and then talked to the researchers about their photographs. The same ten people then looked at pictures of different leisure activities and grouped them into i) ‘activities I enjoy doing now’, ii) ‘activities I used to do but no longer do them’, and iii) ‘activities I would like to try, or try again’.

Ethical issues anticipated in the project

Ethical issues related to the participatory methodology of this project were discussed at length in the steering group and focussed on the interests of all the parties involved. These included: i) the balance of power between people with learning disabilities, practitioners, managers, academic researchers and funders; ii) the danger that people with learning disabilities might be marginalised because of time pressures and iii) ownership of the project and its outputs. We also faced the challenge of trying to include as wide a range of people with learning disabilities in the research as possible to make sure we included people with more complex conditions including physical impairments and communication difficulties. This made us think carefully about how we could be confident that research participants would have sufficient understanding of what they were being asked and that researchers would have sufficient understanding of what participants were communicating. Here we were particularly concerned about the credibility of the research both in terms of participants giving informed consent and generating data that would serve as the basis for analysis and reaching our conclusions.

Ethical issues emerging and developing

At the start of the project there was a lack of clarity about questions of leadership and accountability within the wider participatory process. This made us continually revisit the aims of the research and continually remind ourselves of whose interests the research was intended to serve. This also meant it was important that the research should have a lasting impact beyond the life of the project so we had to think in terms of how best to present the study to the Partnership Board and to wider audiences.

Learning from the experience of working with these ethical issues:

  • It took time to work out how, and at what pace, to carry out the research. We argue that any participatory research based on principles of co-inquiry must allow an initial period to develop a clear set of shared values and priorities from the start
  • The benefits of co-researching in the field of learning disability are many:
    • It helps academic researchers and professionals to work at an appropriate pace
    • It focuses attention on the use of appropriate and accessible research methods
    • It helps to build and develop confidence of disabled researchers and disabled research participants
    • People with learning disabilities become more clearly recognized as generators of knowledge
  • The use of visual research methods facilitates the involvement of disabled people and allows people with complex disabilities to participate in research.  Participants were particularly excited to take their own photographs, or ask carers to take photographs of their chosen images if they were unable to manipulate the camera themselves
  • The role of supporters (for example person centred planners and speech and language therapists) is very important, enabling disabled participants, disabled and non-disabled researchers to communicate with each other more effectively
  • While concerns about the validity of research with people with learning disabilities are easily raised, they are essentially no different from those in research with non-disabled people
  • Outputs of the research should reflect the contributions of all researchers by following a principal of co-authorship and including all researchers in dissemination through presentations, reports and articles  

Contacts

Helen Charnley h.m.charnley@durham.ac.uk; Se Kwang Hwang sekwang.hwang@northumbria.ac.uk; Christine Atkinson and Phillip Walton via John Soulsby john.soulsby@yvc.org.uk