Tina Cook, Reader in Inclusive Methodologies, School of Health, Community and Education Studies, Northumbria University, Newcastle upon Tyne, UK
Pamela Inglis, Academic Head of Pre-registration Health, School of Health, Community and Education Studies, Northumbria University, Newcastle upon Tyne, UK
Thanks go to the men and nursing staff in the forensic division, who worked on this project with such energy, enthusiasm and dedication, plus the managerial staff at the hospital who enabled the study to take place and who continue to support its development in practice.
Purpose – The purpose of this paper is: to add to current understandings of how people with learning disability make informed choices in relation to participation in research; and to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research.
Design/methodology/approach – A participatory/collaborative approach, designed to engage participants in both developing processes for data generation and participating in the analysis of that data, was employed.
Findings – The complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. Participation in the research approach by people with learning disabilities enabled the generation of new understandings.
Research limitations/implications – The small sample size means the collaborative, recursive approach, whilst researched in depth, has not been widely generalised. Whilst there have been some difficulties in taking this forward at the study site, a second phase with another 6 men with learning disability has been carried out. Four of the men from the original study acted as co-facilitators. Although it was not formally evaluated it was considered to be a helpful way of raising issues in relation to participation in research.
Practical implications – There needs to be more careful consideration of the broader issues behind informed consent. A recursive approach to developing informed choice (rather than a single engagement) needs to be embedded in practice. Peer to peer collaboration should be recognised as an approach to developing informed choice about participation.
Originality/value – This paper will be of value to people researching with people with learning disability. It demonstrates that, given appropriate opportunities, people with learning disability can understand some of the more complex concepts in relation to participation in research and so should be involved. It offers clear insights about how this may be achieved and raises the importance of including people with learning disability as active research participants in matters that affect their own lives.
Participatory research; Informed consent; Collaboration; Learning disabilities; Data analysis.
Tizard Learning Disability Review
Emerald Group Publishing Limited
[…] for many years research was done by people who had lots of power to say what life experiences they were researching about […]. And their researchers were called “experts” and they made their careers by researching people who were called “subjects” Keith.
In recent years a more participatory approach to research has been championed both from the human rights perspective, that people should not be excluded from research that describes and affects their lives, and from a methodological perspective in terms of rigorous research:
[…] knowledge constructed without the active participation of practitioners can only be partial knowledge (Somekh, 2002, p. 90).
INVOLVE, an organisation that promotes public involvement in NHS, public health and social care research, defines user involvement as:
[…] an active partnership between consumers and researchers in research […] We do not mean the use of consumers as the “subjects” of research (INVOLVE, 2004, p. 2).
People with learning disability are increasingly being involved in, and taking control of, research. They have a valuable contribution to make (DoH, 2006; Kiernan, 1999; Chappell, 2000; March et al., 1997; Knox et al., 2000; Tuffrey-Wijne and Butler, 2010; Walmsley, 2004). It is incumbent upon us, therefore, to develop processes that enable people with learning disability to engage meaningfully in research about their own lives. To do this, however, people have to:
- know what they are about to participate in;
- know what the implications of such participation might be;
- know about the implications of saying no to participation; and
- understand how any insights or personal details might be used more widely once participation has ended.
Dunn and Veste (2001, p. 599), reviewing the literature in relation to patients with psychiatric illnesses or cognitive impairments, noted that:
[…] alleged deficits in patients' understanding of informed consent may, in fact, be related, at least partly, to poorly conceived, written, designed or organized informed consent documents or processes.
It is the researchers' duty to educate prospective participants about the content and purpose of a study and what to expect if they agree to take part (Arscott et al., 1998).
“Understanding research, consent and ethics: a participatory research methodology in a medium secure unit (MSU) for men with a learning disability” (Cook and Inglis, 2008) was a study funded through the NHS National Forensic Mental Health R&D Programme. The aims of the study included:
- to find out if a participatory approach could help people with learning disability understand more about research in practice; and
- to identify effective ways of enabling people with learning disability to understand notions of research.
The study was facilitated by academic researchers with a background of working with people with a learning disability, one as a teacher and the other as a nurse. It was designed so that participants would have active agency in the processes of the research.
The approach chosen for this study was facilitated action research (FCAR). Action research is:
[…] the study of a social situation carried out by those involved in that situation in order to improve both their practice and the quality of their understanding (Winter and Munn-Giddings, 2001, p. 35).
A key facet of action research is collaborative learning (Reason, 2001; Cook, 2004). In FCAR the researcher/facilitator provides a supportive but questioning arena to enable all participants to contribute to the debate and allow diverse assumptions and opinions to be explored (Hogan, 2002, p. 10).
The participant researchers in this study were seven men with learning disability and staff from the MSU where they resided. The men had a range of diagnoses additional to their learning disability and were detained under the Mental Health Act (1983). They had a range of cognitive abilities but were all deemed able to consent for themselves in respect of joining the study. Men experiencing more acute mental health issues (a key ethical requirement “not to harm” was paramount) and men due to be discharged (the time frame for the study was 30 months) were excluded from the study. Two men withdrew from the study, one due to unexpected relocation, and another at his own request. Staff participants were either qualified registered nurses for people with a learning disability or unqualified nursing assistants. The particular focus of this paper is, however, the participation of the men.
Consenting to participation in the study
We needed to explain our study to the men prior to their decision about participation. Our dilemma was that fully educating them about research would compromise the study. We were careful, therefore, to follow current guidelines about informed consent but did not go beyond the basic requirements. All participants received information and consent forms in written and verbal form and could ask questions about the implications of participation until they were satisfied they could make their own decision. All signed/marked their own consent forms. All the men knew that they could withdraw if they wanted to, even after they had consented. For instance, one man, at the end of the pre-workshop interview, asked:
[…] did you say I didn't have to do this […] because I don't want to go on with this talking (John).
He subsequently changed his mind again and participated in the rest of the study.
Staff who escorted the men were also consented into the study. Given the hierarchical situation generally found in MSUs, working collaboratively with the men raised a number of power and control issues. Prior to the start of the study a full day workshop was held with staff to explain the study, explore their understandings of action research and to discuss issues relating to collaboration with the men in their charge.
Methods for generating data
Pre- and post-workshop interviews: these were used with staff and men to:
- provide a baseline of current knowledge about research;
- track how their knowledge changed over the lifetime of the study; and
- identify what had helped them develop their knowledge.
At their suggestion, the men also interviewed the academic researchers at the end of the study to find out what we had learnt by our participation.
Workshops: these were the main arena for data generation. They were designed to promote discussion on topics related to research, consent and ethics. As research can seem a rather abstract subject, it was necessary to find a way of initiating conversations about research that would engage the interest of the men without stifling their own investigations into what research might look like. A DVD consisting of a set of short scenarios about research was commissioned from a local theatre company. The company is run for and by people with a learning disability. It uses a technique called forum theatre (Boal, 1979), an innovative approach specifically designed to raise issues rather than suggest answers. This DVD gave the group a starting point for discussion. At the request of the men, it was regularly revisited during subsequent workshops. Information gleaned from each workshop was revisited in the following workshop as a way of checking out our understanding of the thinking and ideas being generated. It was a process most of the men delighted in.
At the end of each workshop participants were asked to evaluate what they had learnt, the way in which they had learnt it, and how effective that way of learning was for them. The evaluation sheets used words and pictures to represent learning approaches. These included listening to others, talking to each other, talking with staff and watching the DVD. The men rated each approach according to importance by applying dots to the appropriate boxes. The more dots the more important they considered that method to be. Whilst this was a rather rough and ready way of evaluating, it was supported by discussions and interview data and proved to be a surprisingly portentous and accurate account. For instance, one man who did not verbalise his thoughts at all during the first two workshops put a lot of dots in the box that said “listening” and “thinking” and none in the boxes that referred to talking. In subsequent weeks, as he began to communicate verbally, he put dots in the “talking” and “talking together” boxes. The sheets were kept as data but also copied and returned to participant researchers (the men and staff) as the workshops progressed.
Diaries/fieldnotes: these were used idiosyncratically. Some men carefully wrote down their thoughts in a linear fashion, some designed complex webs of thought with associated signs and symbols, others asked staff to write things into their diaries for them. The “ahha” moment, the time when they realised they had understood something in a new way, and could articulate the approach that had enabled them to understand it, was often captured in diaries/fieldnotes, including those of academic researchers. Data diaries/fieldnotes were important in capturing reflection that took place between workshops.
This mix of methods, designed to provide a number of different ways for the men to contribute in a way that teased out false understanding and meanings, also provided triangulatory rigour.
Two approaches were used to analyse the data. The first was woven into the data generation process. Data transcribed from the workshops was sorted by the academic researchers using a coding system that arose from the main talking points in the workshops. The resultant key themes were presented to the men at the next workshop to elicit their perspective on these themes. This became the basis for in-depth discussion at each workshop and meant the men contributed directly to the analysis process. In addition, a qualitative data package QSR NVivo was used to store, retrieve and search data. Coding was achieved through identifying and recording text relating to similar concepts and ideas (Gibbs, 2002; Bazeley and Richards, 2000). This was also fed back to the men in the workshop sessions.
Pre-workshop interviews revealed that most men had been the subjects of previous research and had some understanding of the notion of research. Most men also had some understanding of what was going to happen in this particular study and recognised that it might be different from their previous experiences:
Because what I understand from it is the fact that instead of somebody else doing research on us or anything else, we're actually doing it. So it's going to be quite fun to find out what information we can get and research sounds quite interesting (David).
Their predominant understanding of research was as a scientific test, like “when they take your blood to find out why you are ill” (Peter) or similar experimental designs:
On YTS I was a gardener […] had to study soil and stuff like […] I was doing, like, the tests and experiments with the soil to find out which plants has got to go in which soil […] Using some test tubes and liquids […] We would get the results and then we would sit down and discuss what soil to use to suit that kind of plant. That was research (Keith).
Discussions during the workshops revealed that huge variations in knowledge were hidden by a thin veneer of understanding. Common words used in research were often recognised, but their meaning was not understood in the research context. For instance, an “interview” was “done on the news on the telly”, “data” was understood as “what's inside a computer”, “text”, as “what you send on your phone”. They had not understood that “just talking” (being interviewed or participating in focus groups) could be research. This was despite the fact that many of them had participated in qualitative research projects during their time in the MSU and they had all been presented with information about such methods when choosing whether to take part in this current study (a study that relied heavily on “talking” as its data collection method). These words were familiar to them, they were not without meaning; they just held a different meaning. The absence (or lack of recognition) of relevant experience in relation to their meaning in research meant that the men were not able to understand them in the research context. This remained true when the information was augmented with pictures and photographs as they still did not have the experience of research to conceptualise possible different meanings. This illusion of understanding meant that the men did not know what issues they should consider and what questions they should ask relating to participating in research and keeping themselves safe. In reality, therefore, informed choice about participation was in doubt.
Constituents for learning
This study aimed not only to find out what the men had learnt during the process but to identify how they had learnt it. Throughout the workshops a variety of approaches were used and developed by both academic and participant researchers to support understanding. These included repeatedly watching the DVD about research issues, discussions, games, taking part in mock interviews, questionnaires, quizzes and presenting their work to each other. After each workshop the men were asked “What helped you learn the most?”. This information was then triangulated with the analysis of the workshop discussions and diary/fieldnote data. The following were identified as the most effective approaches to supporting understanding about participation in research.
Talking together: hearing the perspectives of others
This was considered to be most important for developing understandings about the notion of research. The discussions during the workshops were lively affairs. The first workshop had, however, been characterised by the boldest men making statements about what they knew. The academic researchers then began to facilitate more discursive approaches to support the exchange of ideas. The latter workshops saw men contributing ideas for consideration with the expectation that their ideas would be reshaped and reformed by the group until the essence of the idea was reached and agreed by all: “getting down to the bones of it” (Alf). Hearing other people's perspectives was repeatedly highlighted by the men as the most effective way to learn:
Being with everybody. Putting it together. Like, hearing it from what other people have to say on their points of views on it. Because there was different views from what everybody was saying. Not everybody was equally the same. So that was fun (Alf).
Supporting each other and taking control
As the weeks progressed the men developed ways of supporting each other to understand:
It was […] important that support was something we all gave. It wasn't just supporters helping out researchers with learning difficulties, we all helped each other. It was a two-way thing (Keith).
Some recognised that others in the group needed more help and spontaneously changed the material to help them. This was interesting given that for most of the men, understanding the perspectives of others in their daily lives was identified as a particular difficulty. Helping others to understand was identified as a way of developing your own understanding:
Today David said how when he tried to explain something to the other men it helped him understand what he was thinking himself, and sometimes he realised that there were other things he had not thought of. So telling others helped him. He was very excited by this revelation (Academic Researcher: diary/fieldnotes).
The men began to realise that they could help each other in a way that sometimes the academic facilitators could not:
If you don't mind me saying, I'm not being rude, but we can explain it better than you. You're good at telling us something but we are better at talking about it. We know how to talk to each other you know. We are better at getting it simple – well not simple you know – right for ourselves (Keith).
Today he [Keith] said that although he appreciated my contribution he thought the way they all learnt best was when they discussed it amongst themselves. The reason he gave for this, that he said quite proudly, was that they had learning disabilities and I hadn't (Academic Researcher: diary/fieldnotes).
For instance, the men did not appear to have an awareness of possible consequences of declining an invitation to participate, especially when power dynamics were involved. Working on a scenario of how your boss might feel if they asked you to agree to be part of a research project and you said “no”, our aim was to try and help them see that there could be hidden consequences. Despite our best efforts to explain, the somewhat formulaic responses meant we were, however, unsure whether the men had really understood. Finally, Peter, recognising the concept behind the scenario, retold it in a way that both demonstrated that he had understood and enabled other men to do so too:
If your friend wants you to go for a drink and they've asked you to go to the pub and […] they ask you and you say “No, I don't want to go”, […] you've upset them […] [but they have] just misunderstood […] really you just wanted to stay in […] [It] makes people feel sad, angry that you don't go and they might not ask me next time “cos they think I don't like them now. Answers are important, how we say it. Let someone know you have thought about it. Give them an explanation (Peter).
Being actively involved in shaping their learning environment enabled the men to understand significantly more about the conceptual complexity of participation in research, and the implications of participation, than when this was delivered to them by “others”.
To promote more appropriate approaches to learning the men began to redesign the workshops. At the start of the first workshop, a scene from the DVD was played to the group. The plan had been to show one scene per workshop. At the start of the second workshop, the men asked if they could see the first scene again so that they could think more carefully about it. The following week they asked to see scenes 1 and 2 before seeing the third. This cumulative revisiting was highlighted by the men as key to their understanding. It was also noticed by the facilitators:
In week three I noticed that there was a ripple of laughter about the joke in scene one [of the DVD]. They did not laugh when they saw it on week one. It has taken seeing it three times before they got the joke – before they understood […] If we had done it our way [each week only showing the scene relevant to the workshop materials] they would not have got it (Academic Researcher: diary/fieldnotes).
By week four, one man arrived at the workshop with a plan of what needed to be discussed based on his thoughts from previous weeks. He had considered what had not been understood very well and identified strategies for addressing that. He had also noted the particular difficulties another man was having in taking part in discussions and recommended some actions to help him be more involved. From then onwards the workshops were driven as much by the concerns of the men as by the academic researchers. Indeed, the original plan for six workshops had to be extended to eight as the men wanted to address areas where we had not yet managed to come to an agreed understanding.
A recursive approach
The amendment to the original research plans described above led directly to our understanding of the importance of a “recursive” approach to enabling informed participation. The use of the word recursive stemmed from a discussion about “re”. One man, Alf, asked about the difference between the words “search” and “research”. A number of words had been used during the study that had “re” at the front, e.g. research, revisit and résumé, (the check-up that we did at the end of each workshop to confirm that we all agreed what had been important that week). Alf wondered whether re was at the heart of the meaning of the word research. The consensus of opinion was that if re meant coming back to something, then it was certainly key to research:
One search is not research, that's just what you find first and you don't know if it's good enough (Alf).
The question the men then asked was whether there was a word that used re to describe the process of coming back to ideas and asking the same questions again once they had greater understanding. They dismissed “circular approach” as they felt that meant you came back to where you started, and “we always move on” (David). They also did not like “spiral” as for them that seemed to “go down and we are going up” (David). A dictionary search for words beginning with re led to the word “recursive”, defined as “repeating itself, either indefinitely or until a specific point is reached – involving the repeated application of a function to its own values”. Whilst this was fundamentally intended to apply to statistics it was agreed that it could be re-interpreted in a way that described what we were doing. It was not repetition that helped consolidate learning, but the opportunity to engage in focussed dialectical discussions that led to in-depth understanding. This recursive approach, driven by the men's need to get “to the heart of the matter” (Alf), was necessary for understanding:
Research is like finding pieces of the jigsaw […] It's looking over and over again. Because sometimes if you look at something once you don't get to see the full picture but when you come back and look at it again you'll see something different. And the more times you go backward and forward to it, the more you see. So that's good (Alf).
Being given one off written information, even when augmented by pictures, was identified as the least successful way of being informed.
Support of significant others
Staff spent time between workshops working with the men to discuss, explain, remind and clarify issues. When requested they revisited what had happened during workshops, engaged in further discussion and enabled the men to have access to extra information (particularly through the internet). This was clearly valued by the men and played a vital role in consolidating understandings:
After the session [the staff] were, like, amazing […] Because they gave you little clues and little things that you didn't think of before […]. So in the actual discussion [in the workshops] they [the staff] didn't really play much of a part, but afterwards they were just phenomenal (David).
Having fun and the intellectual challenge
As the weeks went on, when filling in their evaluation sheets, all the men put more dots in the “having fun” box, identifying it as a key way of learning. The message was that you learn best when you are having fun in a relaxed and friendly environment. “I've just had a laugh with it. I've learnt new things” (David). Part of that fun was identified as the sheer intellectual challenge of what they were doing:
I just love information. I just love having information and coming up with new things for it. Just love it. And doing this meant that […] I've got my little drug going where I've had all the discussion and everything going. And information going and flying all over the place. And it's just like, Yessss! Aye. I just love learning (David).
Using real examples
The men enjoyed the process of theoretical discussions but linking that to actual examples was necessary to ground them in the reality of the issues. To help them think about whether you might put yourself in danger if you participate in research we considered a study in the news at that time, where six men had become seriously ill due to participation in research. It was not just the danger that interested the men but why the participants had chosen to take part. There was a particularly lively discussion about payment for participation in research (something they had originally thought entirely a good thing) and whether payment might cloud your judgement.
To develop their critical eye, the men were given information sheets from other studies. Their critique of such sheets, and the articulation of what would have improved them, helped them understand what important questions they needed to know for themselves if considering participation in research.
Some principles for informed participation in research
In recent times suggestions for improving the understanding of information about participation in research have included simplifying language; using multiple modalities; repeating information; using concrete visual aids; role play scenarios and case vignettes (Arscott et al., 1998; Freedman, 2001; DoH, 2001; Fisher, 2003; Wiles et al., 2004). This study highlighted that whilst such processes are important they are not sufficient. More complex approaches to supporting understandings prior to participation in research may be needed that include the active participation of prospective participants.
From our findings, we drew up a set of principles to support informed decision making (Table I). These principles are not a panacea for lack of understanding. One man deemed able to consent to participation in this study still had little understanding of research, and the implications of participation in research, by the end of the study. Nor are they meant as a blueprint. There has to be a balance between level of risk, feasibility and complexity of a study. They do, however, highlight the need to go beyond technical adjustments to ensure that people with learning disability are participating in research in an informed manner.
This study revisited the complexities of informed decision making in relation to participating in research. It demonstrated how a carefully considered and flexible approach that engages peers, “significant others” and external researchers offers a way to improve opportunities for people with learning disability to make informed decisions. The design of the study was, in effect, a model for the practice that is being proposed, that of co-labouring, i.e. working together to achieve understanding. Co-labouring, facilitated by outsiders but taken forward by the men, provided important evidence about effective approaches for enabling informed decision making and made a vital contribution to the study. This study adds to the body of knowledge in relation to the impact of doing research “with” rather than “to” people, on the quality of the findings from that research. The participant researchers added trustworthiness and rigour to both the research process and its outcomes. This furnished them with immense pride in their own ability, not just as men, but as men with learning disability.
Table IPrinciples for informed participation in research
Keith, David, Alf, Peter and John are pseudonyms for the men engaged in this research.
We have used the term “learning disability” in this paper as it is the term used at the hospital and by the men when referring to themselves.
Using simplified language and pictures.
A CD that read out the information sheet and consent form.
The study gained ethical approval from the appropriate bodies, including NHS REC.
Four of the men acted as advisors on the development of information sheets and consent forms for other studies about to be conducted in the hospital.
Arscott, K., Dagnan, D., Kroese, B.S. (1998), "Consent to psychological research by people with an intellectual disability", Journal of Applied Research in Intellectual Disabilities, Vol. 11 No.1, pp.77-83.
Bazeley, P., Richards, L. (2000), The NVivo Qualitative Project Book, Sage, London, .
Boal, A. (1979), Theatre of the Oppressed, Pluto Press, London, .
Chappell, A.L. (2000), "Emergence of participatory research in learning difficulty research: understanding the context", British Journal of Learning Disabilities, Vol. 28 No.1, pp.38-43.
Cook, T. (2004), "Reflecting and learning together: action research as a vital element of developing understanding and practice", Educational Action Research, Vol. 12 No.1, pp.77-97.
Cook, T., Inglis, P. (2008), "Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability", Final Report: NHS National R&D Programme on Forensic Mental Health Research Funding Scheme, available at: http://northumbria.openrepository.com/northumbria/browse?type=author&order=ASC&value=Cook%2C+Tina, .
Department of Health (2001), Seeking Consent: Working with People with Learning Disabilities, Department of Health, London, Doc. 25754, .
Department of Health (2006), Let Me in I'm a Researcher! Getting Involved in Research, Department of Health, London, .
Dunn, L.B., Veste, D.V. (2001), "Enhancing informed consent for research and treatment", Neuropsychopharmacology, Vol. 24 No.6, pp.595-607.
Fisher, C.B. (2003), "Goodness-of-fit ethic for informed consent to research involving adults with mental retardation and developmental disabilities", Mental Retardation and Developmental Disabilities Research Review, Vol. 9 No.1, pp.27-31.
Freedman, R.I. (2001), "Ethical challenges in the conduct of research involving persons with mental retardation", Mental Retardation, Vol. 39 No.2, pp.130-41.
Gibbs, G.R. (2002), Qualitative Data Analysis. Explorations with NVivo, Open University Press, Buckingham, .
Hogan, C. (2002), Understanding Facialitation, Kogan Page, London, .
INVOLVE (2004), Involving Marginalised and Vulnerable People in Research: A Consultation Document, INVOLVE, Eastleigh, .
Kiernan, C. (1999), "Participation in research by people with learning disability: origins and issues", British Journal of Learning Disabilities, Vol. 7 No.2, pp.43-7.
Knox, M., Mok, M., Parmenter, T.R. (2000), "Working with the experts: collaborative research with people with an intellectual disability", Disability and Society, Vol. 15 No.1, pp.49-61.
March, J., Stiengold, B., Justice, S., Mitch, P. (1997), "Follow the yellow brick road! People with learning difficulties as co-researchers", British Journal of Learning Disabilities, Vol. 25 No.2, pp.77-80.
Northway, R. (2000), "Finding out together: lessons in participatory research for the learning disability nurse", Mental Health Care, Vol. 3 No.7, pp.229-32.
Reason, P. (2001), "Learning and change through action research", in Henry, J. (Eds),Creative Management, Sage, London, .
Somekh, B. (2002), "Inhabiting each other's castles: towards knowledge and mutual growth through collaboration", in Day, C., Elliott, J., Somekh, B., Winter, R. (Eds),Theory and Practice in Action Research: Some International Perspectives, Symposium Books, Oxford, pp.79-104.
Tuffrey-Wijne, I., Butler, G. (2010), "Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis", Health Expectations, Vol. 13 No.2, pp.174-84.
Walmsley, J. (2001), "Normalisation, emancipatory research and inclusive research in learning disability", Disability and Society, Vol. 16 No.2, pp.187-205.
Walmsley, J. (2004), "Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research", Nursing Inquiry, Vol. 11 No.1, pp.54-64.
Wiles, R., Charles, V., Crow, G., Heath, S. (2004), "Informed consent and the research process", paper presented at the ESRC Research Methods Festival at the University of Oxford, Oxford, 2 July, .
Winter, R., Munn-Giddings, C. (2001), A Handbook for Action Research in Health and Social Care, Routledge, London, .
Tina Cook can be contacted at: firstname.lastname@example.org