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Ethics case study: Participation in participatory health research

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Description of the project

The ethical challenges described below are drawn from the experience of undertaking the following three research projects: 

All three projects involved working with people who have experience of the topic that is the focus of the study, to develop a participatory approach to researching that topic. 

  1. Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability. Funder: Department of Health National Programme on Forensic Mental Health Research and Development. The aim was to work with men with learning disability to ascertain what they understood about research and participation in research, to work collaboratively to develop understandings of how their knowledge could be enhanced, and to design a set of principles for informed participation in research for people with learning disability. It was a facilitated action research project, initiated by the academic researcher but as the men developed their understandings they gradually began to take control of and design the approach to the learning opportunities. The seven men who took part did so on a voluntary basis but the invites for participation were guided by the staff of the unit. (For more information see: Cook, T. and Inglis, P. (2012) Participatory research with men with learning disability: informed consent, Tizard Learning Disability Review, 17 (2): 92 – 101)
  2. Towards Inclusive Living: A case study of the impact of inclusive practice in Neuro Rehabilitation/Neuro Psychiatry Services. Funder: Department of Health Policy Research Programme: Long Term Conditions. This project identified current perceptions of services for people with long term neurological conditions, investigated understandings of inclusive practice, articulated the impact of current forms of inclusive practice on the lives of service users and identified enablers and barriers to inclusive practice. The project started from a question asked by service users. It took a participatory approach where people with experience were involved in designing the shape of the research, generating and analysing the data and disseminating the learning from the outset. This was facilitated through academic researchers. The core group of researchers were service users, carers and family members, workers from the voluntary sector (paid and unpaid) NHS staff and academic researchers. 105 people took part in the research in a variety of ways, often participating in more than one event which included both generating and analysing data. (For more informationclick here)
  3. Is there a pathway to recovery through care-co-ordination? Funder: National Institute Health Research, Research for Patient Benefit. This study is currently exploring whether there is a pathway to mental health recovery through care coordination. Through capturing the experiences of service users, carers and staff, this study aims to explore how care coordination is delivered and gain a consensus of best practice. Ultimately it will produce an archive of narratives of both recovery and care coordination and present a best practice care coordination toolkit. This project took a similar approach to development as Towards Inclusive Living, with the question being initiated from people with experience who are now designing and carrying out the research. 

Ethical issues anticipated in the project

  • Needing to both demonstrate and argue competence issues, particularly with the ethics committees where there has been a tendency to see certain types of people as ‘vulnerable’ rather than recognise them ‘capable’.
  • Mental Capacity Act compliance issues – capacity to participate, capacity to consent and who makes those decisions remains a delicate balance that does not always fall on the side of competence due to competing challenges in relation to safety and care.
  • Gatekeeping issues - with members of staff and/or relatives and carers who, with a duty of care in mind, might have differing views about whether the person could/should take part.
  • Confidentiality and anonymity issues. Engaging in participatory research necessary means there have to be different, but clear understandings of what levels of confidentially and anonymity can be achieved.
  • Researcher safety issues – both in terms of researchers going out into the community, and researchers working with people with known challenging behaviours.

Ethical issues emerging and developing

A key issue that ran through all three projects was how people with experience gained access to the project, both as researchers and participants. The process of gaining ethical approval through the NHS REC and academic system did throw up some interesting issues but they were neither complex nor, in many ways, the core ethical issues: they were more details. The real issues occurred when the projects went live and people wished to participate either as a participatory researcher, or as participant. Barriers to participation came from a number of sources (often unexpected) and raised issues about how the right to participate is enabled in practice. When people wish to participate but are discouraged, dissuaded or actively told it is not possible by those upon whom they rely to support their participation; when access to whole groups of people is comprehensively denied by those in institutional managerial positions; when access systems are so complex that people decide that to become participatory researchers is too complicated or uncomfortable (for instance some researchers were asked to have vaccinations to meet with people they ordinarily met as part of their daily activities raises questions about what makes a process). Denying people access to being researchers, or part of the research process, for reasons other than their own decision making, raises issues about power, relationships, legislation and bureaucracy and its impact on the ability of those who might be more marginalised to have their voices heard. 

Learning from the experience of working with these ethical issues

  • To continue working with ethics committees about the notion of competence and voice to ensure that those who might be perceived as ‘vulnerable’ do not have their right to participate subsumed by a perception of care.
  • To develop work with institutions in relation to participation and voice, so as to avoid gatekeeping behaviours that affect the right of people with experience to consider, for themselves, participation in research, either as researchers, or as participants in research. 
  • To revisit application of inappropriate institutional bureaucratic systems, designed for one purpose, but used for another, that become a barrier to wider participation in research.
  • To raise the awareness, with carers/family members, of the opportunities, possibilities and rights of people they support, to make their own decisions but also to consider more fully, when designing the research project, the time and cost needs of carers/family members, when they are necessary to enable a person to take part.
  • To continue to discuss the issue of capability and capacity based on the particular needs of participation rather than as an overall concept.

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These projects have demonstrated that, whilst there are key ethical principles and guidelines, it is often the more subtle, unexpected and difficult to anticipate issues that act as barriers to participation. Ongoing discussions about the impact of activities and behaviours on enabling access to and within research are a necessary part of the ethical process.

Contacts

Tina Cook, Northumbria University: tina.cook@northumbria.ac.uk

Helen Atkin, Northumbria University: helen.atkin@northumbria.ac.uk

Nicola Armstrong, Northumberland Tyne and Wear NHS Foundation Trust: nicola.armstrong@ntw.nhs.uk

Andrew Stafford, Lawnmowers Independent Theatre Company: thelawnmowers@msn.com 

Further Details

For more articles about studies that have used a participatory approach click here.