Abstract:
This article evolves from a study undertaken by the author in 2004, which set out to explore ways of finding out from people with learning disabilities who have used art therapy services about their views and experience of art therapy provision. The article has drawn from a literature base that includes art therapy but is also informed by the broader sociological literature within learning disability research.
The paper considers the influence of ethical committees in shaping decisions within qualitative research design. Ethical, methodological and organisational issues are discussed as a consequence of emerging difficulties encountered in setting up the research study.
Introduction:
The impetus for this article came from my growing frustration in working as an art therapist with people with learning disabilities, due to limitations of not having a system to formalise a patient’s own evaluation of treatment and services received. In conducting a literature search I was hoping to find out how other therapists have addressed the issue of user involvement in evaluation with this client population, but became aware of the lack of published information.
This study aimed to evaluate whether art therapy provision met the needs of people with learning disabilities who have in the past used art therapy services and to recommend changes to improve services. In order to find out more about whether art therapy provision was meeting the needs of people with learning disabilities, I wanted to be able to gather information from former service users regarding their experience of art therapy service provision.
For this purpose, a focus group was chosen as the fundamental investigative tool. Additionally a series of ‘prompt’ questions were formulated which closely followed principles suggested for the audit and evaluation of service provision set out by the Department of Health in their strategic policy on Psychotherapy Services in England (1996:61). According to the document’s authors’, services can be successfully judged against a number of criteria: relevance; equity; accessibility; acceptability; efficiency; effectiveness; empowerment. These principles provided a structure for the formulation of nine prompt questions, which were divided into those that asked questions about participants’ understanding of art therapy processes and those that had a focus on the quality of, and satisfaction with, art therapy service provision. Other questions looked at important areas of the therapy process itself and had a focus on participants’ perceptions of effectiveness of treatment. All of the questions were designed to prompt group members to consider particular aspects of their experience of art therapy and to invite reflection on the factors highlighted in the psychotherapy strategic review document.
However the nature and substance of the enquiry changed following application to the Local Research Ethics Committee (LREC). Whilst the original application for ethical approval was granted, this was subject to changes being made within the research application. In order to proceed a research protocol was required that delegated responsibility for ensuring that prior to recruitment, a participant’s psychiatrist was consulted regarding whether, in their opinion, a participant was able to give informed consent. This was recommended by LREC since the research study was to be undertaken outside the NHS Health Board area in which the researcher was employed.
This current paper draws upon and extrapolates from protracted difficulties in setting up the study, and subsequent unsuccessful attempts of recruiting potential subjects' to the focus group. Since I was not sure whether the reasons for recruitment difficulties was a consequence of limitations imposed by the research protocol, or, whether the failure was more a reflection of people exercising a choice not to become involved in the study, I thought this question merited fuller enquiry. This led me to further investigate the way in which initial contact was made as I thought that there was a correlation between the research protocol and the difficulties encountered in recruitment.
Service Evaluation:
‘It is only relatively recently that it has become widely accepted that an essential part of service evaluation is the inclusion of the opinions of consumers regarding the quality of the service they receive’. (Lowe 1992)
Art therapy is one of the few psychotherapeutic professions offering access to people with learning difficulties (Rees, 1998:15). However, and despite a long history of service provision, there have been few studies, until recently, that have attempted to assess the impact of such treatment with this population. A notable recent exception has been the study by Pounsett et al (2006) which sets out to examine whether change can be measured in art therapy with adults with moderate/severe learning disabilities. In their summarising, the authors acknowledge that future consideration in their research would benefit from seeking a more active involvement from service users as researchers. In the literature, there is little published research studies in which service users have been consulted to give their views of services or treatment, and a lack of published accounts of attempts at including such views in the shaping of decisions pertaining to how future services are delivered.
According to Parry consideration of client/user perspectives is an ethical issue and ‘meeting users’ requirements is a fundamental definition of service quality’ (1996:435). Although there may be difficulties with obtaining service users’ views regarding satisfaction and dissatisfaction with the services they receive Parry suggests that ‘anonymity, independent data collectors, triangulation, and persistence’ are important, and ‘actively involving users or ex-users in assessing services’ acceptability’ is a key component in determining service quality.
Taylor (1998:207-208) points to health reports issued by the Welsh Office which highlight the need for clinicians to carry out clinical effectiveness research providing that such research can demonstrate ‘objective evidence of effectiveness’ in ways which include consultation with service users. According to the Welsh Office reports, clients’ views need to be taken more seriously by practitioners as they can provide an important source of corroboration about the effectiveness of treatment and as such their opinions ought to be ‘incorporated into any system of change or modification’ (1998:217).
Engagement in Service evaluation is more often a routine feature of clinical practice in areas such as Mental Health. In these circumstances patients are sent a follow-up evaluation questionnaire post-therapy to assess the effectiveness of the treatment intervention. This is not standard procedure with people with learning disabilities, perhaps because of a range of difficulties associated in working with this group. However as a consequence, this places barriers to effective participation in peoples’ care and treatment and leads to further disempowerment of this client group.
In seeking to work with clients from the outset of contact with the Service, to try and engage with them in the evaluation of the Service, not only is one trying to make them partners in their own treatment, but also partners in evaluating that treatment. In addition one is also looking at educational processes and structures that might help people to be more empowered in that way.
Any such post-therapy evaluation with this client group could become a time consuming and long-term process since it would be necessary to start this work when clients were first referred to the Service. Such a process would involve clients getting used to the idea that at some point someone would be coming back to ask them what they thought about the process, and that this might also potentially have an impact on therapy outcomes.
Research/evaluation initiatives that were built in to therapy at the outset of treatment, where clients were given the opportunity to decline such follow-up would be thought more likely to succeed if seen as an integral part of treatment rather than something separate and external. Uncertainty remains however as to how follow-up evaluation could be built-in as part of routine clinical procedure. Concern as to how follow-up could be done with this group and who should carry out this procedure; the therapist involved in the person’s care, non-art therapist research support workers or external auditors, is open to question.
Moreover, if evaluation was to be carried out by the art therapist, additional concerns might be raised about his/her ability to contain and manage such a procedure as part of routine clinical practice because of the complexity of issues with this client group. Taylor (1998:218) argues against therapists themselves evaluating client feedback in clinical outcome studies, noting the difficulties that would arise for the therapist in being objective about their own work and performance and suggests such involvement defeats the object of having a non-subjective study.
Added to these are concerns that follow-up evaluation carried out by the therapist might aggravate and complicate already difficult issues concerning separation and ending. Given the nature of attachment with the therapist in therapy for this client group and, in the absence of familial and social networks, participant resistance to re-connecting with thoughts about therapy, is quite an understandable concern.
No discussion of evaluation and research can be made in the field of learning disabilities without considering the relation of power, and the dislocating of power in traditional research methodologies with this population.
Power and learning disabled research projects:
In her own research in addressing participatory strategies for including people in the research process, Rodgers (1999: 425) refers to the time-consuming nature of gaining permission to approach people with learning difficulties from the many different agencies involved in providing care. She points to how, in this environment, ethical considerations may only represent one of a number of considerations. Rodgers is critical of how the concerns of disabled people are often given scant attention in a market environment where multiple service providers (in the public sector) have their own concerns and agendas regarding what constitutes appropriate research methodology.
The lack of published Art Therapy research in the area of learning disabilities user involvement might suggest a reluctance and concern by Art Therapists about research adversely impacting on therapy outcomes. In this light, it might be reflective of a wish by the therapist to protect ethical boundaries around the therapeutic relationship. However, whilst acknowledging these concerns, the loss in this seems to perpetuate further the exclusion of people with learning disabilities in having their voices heard.
Alternatively, I wonder whether the lack of research in this area, in working with people with learning disabilities, might be saying something else. Whether it might be inferring our 'unworthiness', our 'second rate' capacity as researchers, and as such be reflecting aspects of counter-transference phenomena. Rees (1998:240) in discussing the importance of supervision in being able to address counter-transference in therapy, describes how in working with a learning disabled client population, the therapist may ‘experience powerful doubts about her competence and a nagging feeling that she is just not good enough’. Just as the art therapist may experience feelings of being deskilled in clinical work with this client group, so too might the art therapist/researcher find himself disempowered by the same forces of inadequacy and self-doubt.
The art therapy literature does point to the need to underpin clinical work by addressing issues of context, organisation and theoretical approach, as it is argued these broader issues have bearing on whether clinical work with clients who have learning difficulties is ultimately supported or undermined. Rees (1998: 14-28).
Rees refers to the difficulties in developing practical ways of helping people with learning disabilities to access art therapy services, and of empowering participation in such treatment. However, she goes on to note how people with learning disabilities are often not encouraged to become more independent, pointing to how choice in deciding about treatment options is very often not in their control.
For many individuals, the voicing of their opinion might involve adopting an entirely new role out with their normal life experience. This is consistent with findings from the learning disabilities literature. Kroese, Gillott & Atkinson (1998). The authors suggest that reluctance to make demands upon services or to criticise when services are not delivering to appropriate standards, may be due to this population being unaccustomed to their opinions being sought, and listened to. It was also thought that for people to be more fully engaged in processes where decision-making was expected (e.g. about the quality and provision of services), that this might require adaptation to methodological procedures, in respect of building-in opportunities to learn and practice new sets of skills.
However, it is also clear from the literature that qualitative research involving user participation frequently encounters difficulties once submitted for approval by institutions that control research (Rodgers, 1999:423). In part these difficulties have arisen because of ideological differences that exist within healthcare research politics. Health related research has traditionally favoured approaches couched in positivist thinking, and can often struggle to accommodate philosophies that eschew empirical based research methodologies. Qualitative research that incorporates methods drawn from interpretive approaches aimed at understanding disability as a personal or social phenomenon are often overlooked.
Rioux (1997:108) is critical of the pressure that a ‘culture of objectivity and positivism’ exert within health research agendas. In the field of disability research, she points to how such pressures significantly favour information that presumes bio-medical solutions, in which deficit is viewed as stemming from an individual pathology. However, as Rioux notes this perspective often fails to consider the broader systemic conditions that disable people, including barriers encountered by this population, such as being able to access mainstream services and provision.
She helpfully notes how cultural bias within research is reflective of wider societal values, where ‘rationality and objectivity are prized as necessary conditions for the social and economic functioning of society’. Such biases, according to her, bring pressure on the research community to rely on strictly positivist criteria to judge the validity of research, and to be suspicious of more inductive and qualitative research approaches. Thus, in order to address the reductionism common to disability research, Rioux suggests that there is a need for researchers to ‘recognise the forces that shape the questions we ask and the criteria of validity we adopt’.
As noted, qualitative research involving user participation frequently encounters difficulties once submitted for approval by institutions that control research and this is what I would now like to consider in relation to my own study.
Ethics committees and their influence upon the form and content of learning disabilities research:
Whereas in art therapy there is an ethical duty of care to support and protect the patient, in research by contrast, the researchers only direct involvement in the lives of participants is one of collecting data.
(Swain et al 1998: 32) refer to a ‘labyrinth of dilemmas’ encountered in research studies with vulnerable and powerless groups in society, where the focus for investigation is seen as a process of intervening in the lives of others, particularly in relation to private concerns. The authors suggest that whilst such research may be justifiable in terms of empowerment and the potential for illumination for the interviewee, it can at the same time ‘invoke ethical questions that can raise multiple issues involving conflicting principles’. According to the authors the risk of intrusion in conducting research into the lives of people with learning difficulties raises questions about the rights of participants to control the data being gathered. Where the focus of the investigation has the potential to arouse strong feelings, stir memories, or invite perceptions which would otherwise not have occurred, this raises an assortment of ethical questions that require attention in the setting up of the research design.
To what extent is the researcher responsible for the mental wellbeing of participants in the study? And, given the possibility that the researcher’s responses might be unhelpful or even exacerbate problems, and that the provision of adequate follow up may not be provided, to what extent does ethical responsibility, therefore, rely upon the researchers’ capacity and competencies in making the research environment safe?
According to the Department of Health document Governance arrangements for NHS Research Ethics Committees, ethical review is necessary in order to ‘protect the dignity, rights, safety and well-being of all actual or potential research participants’.
Obtaining ethical approval is necessary in order to undertake research that involves the gathering and analysis of patient data for purposes of publication. Ethical approval involves meeting criteria set by research ethics committees, and is a lengthy process requiring a formal written application outlining the range and scope of the research project.
In the field of learning disabilities research, particularly where the research is qualitative in design, a range of issues can present themselves even at this early stage in the application process. Conflicts of interest can emerge in obtaining ethical approval to undertake the research, where data being requested is couched in the language of empirical scientific enquiry set within a positivist framework. Such is the disproportionate weight placed within the ethical application format on questions framed in terms of numbers of subjects and controls, and about which drugs would be involved in the research.
Following submission to the ethics committee, further recommendations for changes to the research protocol can be requested by the committee prior to ethical approval being given, and such recommendations can have significant bearing on the final nature and substance of the inquiry.
In order to undertake this research, I had to present my research proposal for ethical committee scrutiny. This involved two stages. Firstly I had to secure formal ethical approval from Local Research Ethics Committee (LREC), and then my proposal needed management approval from the Primary and Community Division Research and Development Committee, located in the NHS Health Board area where the research was to be carried out. This involved a lengthy process of submitting a formal application form outlining my research proposal, followed by a subsequent application for approval at a Trust management committee level involving the drafting of a research protocol. The process of seeking ethical approval from the Local Research Ethics Committee required care and circumspection, as any subsequent changes to the research would mean that I would have to re-submit a new application.
My application to the Local Research Ethics Committee was approved, pending changes to the research design recommended by the Primary and Community Division Research and Development Committee. These regarded the issue of consent, namely that I should reassure LREC, and NHS Trust research committee that a protocol was in place minimising the risk attached to a person’s ability to provide informed consent.
The Primary and Community Division Research and Development Committee suggested that I seek the opinion of a potential participant’s Responsible Medical Officer (RMO) as to whether the research participant was able to give informed consent.
In response to these concerns a research protocol was produced which outlined the procedures which I would adopt to help safe guard research participants from potential risk associated with the study (see appendix 1). In order for the research to proceed, recommendations were therefore incorporated within the protocol concerning people’s capacity to give consent and requiring confirmation from the Responsible Medical Officer caring for any potential participant.
Another recommendation was that the Art Therapy Department involved in hosting the research was delegated responsibility for ensuring that prior to recruitment, a participant’s psychiatrist was consulted regarding whether, in their opinion, a participant was able to give informed consent. This was recommended since the research study was to be undertaken outside the NHS Health Board area in which the researcher was employed. The Art Therapy department from which participants were drawn for this study is an established NHS facility serving a large, mainly urban population in east central Scotland. Clients are referred to the art therapy service for many reasons including poor socialisation, communication difficulties, mental health or behavioural difficulties. Potential research participants were identified who had previously been in art therapy but had finished treatment between four and twelve months prior to the commencing of the study. It was thought that such a timeframe would allow participants’ enough time away from art therapy treatment in order to minimise potential boundary confusions with the research study, whilst providing a sufficient timeframe in which the therapy experience remained vivid enough in peoples’ minds for recollection and reflection. Since the aim of the study was to examine as broadly as possible people’s experience of art therapy, I had decided not to restrict recruitment to any one particular form of treatment (group art therapy/one-to-one individual therapy), nor to restrict access based on the person’s duration within treatment/assessment.
Having identified a list of individuals who would fit the criteria for participation in the study, a member of the Art Therapy department contacted the RMO’s prior to participants’ being approached. This was done using a pro-forma letter and questionnaire in which the RMO was asked whether, in his or her estimation, a participant was able to consent to take part in the research project (see appendix 2).
The problem of informed consent:
Rodgers (1999:428) notes with consternation the dilemma in conducting ethical research in this field, where the involvement of disabled people in providing consent to take part in research not associated with clinical treatment is often at odds with ethical committees’ concerns about protecting this group against invasive or unscrupulous research. Rodgers poses interesting questions about where the balance lies between guarding vulnerable groups from unscrupulous research on the one hand, and in the over-zealous protection by Research Ethics Committees and others, which can stultify research with this population.
Conducting research with individuals who may very well be struggling in their lives with issues of lack of control and autonomy, and of identity, raises important and complex ethical concerns about power, choice and the capacity for decision-making.
How does the researcher know if someone really understands what is being consented to in a decision to become involved in a research project? And what opportunities are there for refusing consent, particularly where research involves people who do not necessarily have good communication skills?
Informed consent requires that a research participant understands what the research entails, and it requires the capacity to consent. It is a safeguard which protects the rights of participants and fulfils the responsibilities of researchers.
However, Swain, Heyman and Gillman (1998:29) perceive as too simplistic the notion of informed consent being something that is provided freely and voluntarily, when the process is quite often open to subtle and often unintended forms of manipulation and pressures being placed upon participants by researchers and others. Moreover, the notion that informed consent is something that can be contracted at the outset of the research with this population is viewed as being deeply problematic. Knox, Mok, Parmenter (2000) suggest that informed consent should rather be viewed as a consequence of a continual process of negotiation between the inquirer and the informant, not being determined before the commencement of the study but rather evolving over its course.
Being able to take time to get to know individuals' prior to the collecting of data is highlighted as a significant and necessary process in the learning disability research literature (Flynn, 1986), and was thought a contributory factor in subsequent recruitment difficulties in my own study. The lengthy process of responding to recommendations from LREC, NHS Trust research committees, and with professionals associated with the care of potential research subjects in order to gain permission to approach potential participants’, had a marked influence in dictating the pace of the research study. This placed considerable pressure on the project, and resulted in research deadlines having to be continually revised.
Focus groups:
Health related research has traditionally favoured approaches based on positivist philosophies and can often struggle to accommodate philosophies that eschew empirical based research methodologies. I now wish to turn attention to a research methodology used in qualitative research to elicit data from subjects concerning subjective views and opinion. In order to find out more about whether art therapy provision was meeting the needs of people with learning disabilities, I wanted to be able to gather information from service users regarding their experience of art therapy service provision. I chose a focus group as the fundamental investigative tool for data gathering.
Kitzinger (1995) cites advantages of using focus groups in exploring peoples’ knowledge and experiences. She points to how focus groups can be an effective methodology for examining how and why people think in particular ways, and how it is particularly suited to encouraging research participants to pursue their own issues and priorities, and in using their own vocabulary to do so.
Focus group methods can also encourage open conversation about embarrassing subjects and permit the expression of criticism and the exploration of different types of solutions; this is invaluable if, according to Kitzinger, the aim of research is to improve services. Such a method, she notes, is especially appropriate when working with particular disempowered patient populations who are often reluctant to give negative feedback.
Barr, McConkey, and McConaghie (2003: 579) note that for people who have learning difficulties, the dynamics within focus groups can help people gain confidence. In addition, focus groups provide a safe, non-threatening and non-intimidating environment in which peer support and validation of views and experiences can emerge. Gibbs (2001) however, notes that traditional interview and focus group approaches may need substantial adaptation and revision in order to allow opinions to be heard when working with people with learning disabilities, particularly when communication difficulties are present.
Where the focus of the investigation has the potential to arouse strong feelings, stir memories, or invite unwanted or forgotten about thoughts, this raises a number of difficulties with this client group, because of issues surrounding informed consent and understanding, confidentiality and the capacity to maintain personal boundaries. Difficult emotional issues for participants can arise, especially with people not accustomed to being asked their views, and with those who lack the capacity to retain the boundaries of confidentiality, and for others where asserting emotional needs in a research group can be a frightening experience. Having to discuss things in a focus group might be difficult for some participants, particularly those who had worked in therapy on a one-to-one basis. Such concerns might be exacerbated in a group situation, where there was a further risk that confusion might emerge associated with blurring of boundaries between the research study and therapy. Furthermore the impact of disability in allowing people to make an intellectual/cognitive separation between doing research in order to improve art therapy and therapy itself is problematic for this client group, much more so than for people of a greater cognitive ability.
Such research would have to consider ways of helping people to make this separation possible in order to ensure participants were emotionally able to handle the difference between therapy itself and a discussion about it. In addition potential participants would need to be able to retain the boundaries of confidentiality in order to ensure safety in a group discussion format.
Communication with participants is at the heart of qualitative research, but as this can be problematic with people with learning disabilities, there is a "need for creativity in designing methodologies that allow people’s true opinions to be heard" (Gibbs, 2003).
Communication difficulties with people with learning disabilities can sometimes make knowing what the issues might be regarding their participating in research problematic. Problems may arise for individuals in connection with understanding how one would contribute to such a group, especially where assertiveness issues or communication problems existed. This is rendered particularly difficult when working with people who use the medium of art therapy because they have problems in verbally being assertive. Participation in this kind of research would be extremely problematic for this group, since it envisaged individuals being able to express critical opinion and adopt the role of discerning service user.
Furthermore, asserting emotional needs in a group could be a potentially frightening experience for these clients, particularly when not accustomed to being asked for their views and being listened to.
A principle difficulty in conducting a research study in which people are being asked to think about a period associated when things were not going well might be that clients do not want to return to a period in their lives that was perhaps associated with difficult and painful memories. It is quite conceivable and understandable that individuals who were former clients might prefer to present an image of themselves as having moved on with their lives, rather than looking back on a period in their lives associated with potential illness, loss, confusion and dependency.
Other factors can often fall outside the control of the researcher, but can further compound difficulties. I will now consider some organisational difficulties that I experienced whilst conducting my study.
Organisational difficulties:
In terms of viability, such research suffers in terms of being able to recruit sufficient numbers of participants on to a study. In my own study nine people were consulted and out of these nine, three people consented to take part, resulting in a 33% response rate. Accordingly it might be surmised that if a sample group of thirty people could be found this might have resulted in ten subjects consenting to take part. However the Art Therapy Department is a comparatively small service constrained by low turnover rates, mostly due to the slow process of building relationships with the client population. Recruiting a higher ratio of participants to such a study is therefore largely dependent upon access to a large enough pool of potential clients and the speed of patient turnover by the service. On this basis it seems unlikely that a larger sample group would be found.
Since low turnover is a relatively common feature of Art Therapy departments that provide services for this client group, a question arises about the feasibility of carrying out similar future research studies within a single site. This may point to the need for future research projects with this population to be sited as part of multi-centred studies, where there would be greater access to a critical mass of potential subjects.
As a condition of gaining ethical approval, participants’ keyworkers were asked to provide information about the research study. At the time it was suggested that it would make sense for the Art Therapy Service to make contact with participants keyworkers in the first instance, since the Service was the known factor in this project, and that keyworkers would probably be more open to an approach by the Service. It was also a way of ensuring that the client was informed by somebody they knew about the project so that they were getting the information from a familiar face and would be able to judge whether or not they understood it. However the procedure made gaining access to participants slower because the researcher was dependent on members of the Art Therapy Service to chase-up the keyworkers. The procedure also relied on the goodwill of keyworkers in helping gain access to participants. Things might have been speeded up if this had been under the control of the researcher, and the Art Therapy Service had instead simply written an introductory letter to each keyworker stating that the researcher would be getting in touch with them, and that he was supported in this by the Art Therapy department.
Whilst some of the Responsible Medical Officers returned the consent forms within 24 hours, others needed the art therapist to chase them-up over several weeks.
Further, in some cases the Responsible Medical Officer had changed and the person believed to be the RMO turned out not to know that client, resulting in a further delay while the art therapist tracked down the responsible person.
Difficulties in recruiting potential subjects’ had meant that a significant gap in time had occurred for two of the participants, from the time they had originally consented to take part in the study. In both instances participants’ had given their consent in July, but as the viability of the group depended upon recruiting at least one other participant, both these individuals were left waiting until November until a third participant was eventually found. The gap between the initial letter being sent out to participants by the Art Therapy Department, and the eventual invitation to take part in the focus group was therefore a potential source of weakness in the study, impacting directly upon recruitment.
The learning disabilities literature highlights that people with learning disabilities have poor concepts of time, have difficulties remembering information, and have difficulties with processing information (Flynn, 1986, Booth and Booth, 1996).
In retrospect, therefore, it was unreasonable to leave people waiting around, in some cases for several months, as it could be surmised participants would either have forgotten about the project or life would have changed for them. Instead of participants being expected to wait until a viable group was gathered, this situation might be alleviated if an individual interview was arranged as soon as a person had consented to become involved, and whilst things were still fresh in the person’s mind.
The interviewer would have been able to gather some basic data and, importantly, allowed opportunities for direct contact to be made between participant and researcher. At a later point when a group became viable, participants could again be contacted, having by this point already been acquainted with the researcher. It was speculated that such early engagement would increase the possibility of participant willingness to take part in the focus group.
Building collaborative partnerships in ways in which people with learning disabilities are enabled to be part of the research agenda decision-making process is extremely difficult, given the general lack of opportunities this group have in exercising control over research decisions. As I draw to a conclusion I wish finally to consider some of the issues surrounding research collaboration in relation to my study.
Participatory research:
Future art therapy research studies with this population needs to take account of the growing body of literature about participatory research involving people with learning disabilities. This kind of research would involve participants collaborating in the actual research process as co-researchers and authors of research, and would invariably require the researcher in much preparatory development and educational work in order for research participants to feel sufficiently confident, empowered and skilled to be able to participate.
The literature highlights the enormous amount of educational work that has been done to make such an approach accessible for people with limited knowledge or understanding about research and research techniques (Burke et al, 2003; March et al, 1997; Minkes, 1995; Ward, 1998; Richardson, 1997; Cocks and Cockram, 1995).
What could art therapy research contribute to this growing literature? Is it possible that preparatory individual work with this group might go someway towards starting that educational process for people who are not familiar with being interviewed, or not familiar in taking part in research driven focus groups? Can such preparatory work help in enhancing understanding of the research process, in order to enable people to be more effective participants, and be in a better position to assess, contribute to, and influence research methodology and findings?
Building collaborative partnerships in which people with learning disabilities are enabled to be part of the research agenda decision-making process is extremely difficult however, given the general lack of opportunities this group have in exercising control over research decisions. Certainly in my own study, external factors had been a driving force in determining the extent to which any such collaborative partnership could emerge. Permission to conduct the study was determined by the Local Research Ethics Committee, and this permission was given subject to the adopting of a research protocol that distanced potential informants from the researcher in the initial stages of recruitment. There was nobody with a learning disability that was a member of these committees and there was no opportunity afforded potential informants to have input into decisions regarding the research agenda.
Whilst acknowledging the potential benefits of collaborative research, I am also aware that this is a complicated subject, hiding many potential uncertainties for the clinician/researcher. What for example are the competencies and skills required by clinicians as researchers to manage the complexity of demands necessary to engage in participatory research with this client group?
What are the potential implications of intellectual impairment for involvement in such research? Future methodology would have to ensure participants were intellectually and emotionally able to differentiate between therapy and research. There would need to be some cognitive and emotional capacity to distinguish between involvement in research linked to the ascertaining of views about art therapy provision, and in discussing of participant’s experience of therapy, from actual therapy itself. Stalker (1998:15) echoes this line of thinking. She is critical of the amount of emphasis given within participatory paradigm research to the highlighting of disabling social, cultural and economic barriers (perceived as obstacles preventing people’s participation in the research process). According to her, the comparative lack of attention given within this literature to the consequence of disability and impairment, for involvement in the research process, is a serious omission. She suggests there is a need for attention to be paid to the implications of impairment if we are to take seriously the participation of people with learning difficulties in the research process.
Conclusion:
Communication with participants is at the heart of qualitative research, but as this can be problematic with People with Learning Disabilities, there is a ‘need for creativity in designing methodologies that allow people’s true opinions to be heard’ (Gibbs, 2003). Quite by chance around this time I attended a learning disability conference in Edinburgh. One of the speakers at the conference, Gibbs, a junior doctor, presented a paper derived from her research that was concerned with the experiences of adults with learning difficulties and their carers in general hospitals. In reflecting upon her research methodology, she noted that traditional interview and focus-group approaches might need ‘substantial adaptation and revision’ with people with learning disabilities, particularly when communication difficulties are present. The observation resonated for me at a time when my own study was experiencing considerable difficulty due, at least in part, to methodological shortcomings. Gibbs gave some examples of the difficulties encountered in focus group work with people where communication was hampered due to the severity of the learning disability, or from specifically altered communication patterns, for example when autism coexists with learning disability. However it is easy to extrapolate to include other circumstances in which adaptation to methodology may be needed, for example in those circumstances identified in subsequent interviews in my own study, where identified communication needs co-existed alongside difficulties in asserting emotional needs.
The ways suggested by Gibbs to improve communication such as taking time to get to know individuals before collecting data, draw heavily upon disability research and the literature surrounding user collaboration. However, as I have already mentioned, building collaborative partnerships in ways in which people with learning disabilities are enabled to be part of the research agenda decision-making process is extremely difficult given the general lack of opportunities this group have in exercising control over research decisions. Certainly in my own study external factors had been a driving force in determining the extent to which any such collaborative partnership could emerge, with Research Ethics Committees being influential in defining crucial decisions concerning initial contact and recruitment on to the study.
According to Gibbs (2003), finding creative ways to include people with learning disabilities in healthcare research and evaluation is necessary. This is particularly important for individuals whose needs are complicated by communication difficulties as well as for individuals whose profundity of learning disability would normally present significant challenges to their inclusion in traditional interview or focus group research. Adapting research methodology to improve understanding of research processes is recommended by Gibbs, and is supported by the research literature attached to user collaboration.
Involving users of services at an early stage as collaborators in their own treatment is a key finding arising from the interviews. Education in participative research methodologies is considered as being important in allowing people with learning disabilities the necessary skills and opportunities for enhancing their involvement in decision-making processes in art therapy evaluation and treatment.
However, it is clear from the literature that qualitative research involving user participation frequently encounters difficulties once submitted for approval by institutions that control research (Rodgers, 1999:423). In part these difficulties have arisen because of ideological differences that exist within healthcare research politics. Health related research has traditionally favoured approaches couched in positivist thinking, and can often struggle to accommodate philosophies that eschew empirical based research methodologies. Qualitative research that incorporates methods drawn from interpretive approaches aimed at understanding disability as a personal or social phenomenon are often overlooked.
In their own conclusion Knox, Mok, and Parmenter (2000:58) consider that there is a need to examine some of the entrenched practices and beliefs held by institutions that control research, that have traditionally excluded people with disabilities from participation in the research-making processes.
Acknowledgements:
I wish to acknowledge the amount of help I have had in writing this, particularly from Dr A. Gilroy, Mr S. Willoughby-Booth, Ms J. Pearce and Mr B. Damarell.
References:
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Biographical Details
John McCulloch completed his postgraduate training in Edinburgh in 1997. Since then he has worked with people with learning disabilities in NHS settings in the North East of Scotland. In 2005 he completed his Masters in Research in Art Psychotherapy at Goldsmiths College, London.
APPENDIX 1
RESEARCH PROTOCOL OUTLINING PROCEDURES FOR OBTAINING INFORMED CONSENT
- The ability of potential participants to give informed consent to take part in the project will be established before they are approached.
- The Consultant for each potential participant will be contacted to establish if the person is able to give informed consent.
- The invitation to take part in the project will be sent to potential participants via keyworkers in the first instance.
- Keyworkers will be asked to go through the information sheet and consent form with each potential participant to ensure they understand it.
- In addition to the participant’s signature on the consent form, keyworkers will be asked to countersign the consent form to show that it has been explained to the participant and understood and the consent is freely given.
APPENDIX 2
LETTER TO RESPONSIBLE MEDICAL OFFICER
Date
Art Therapy Department
Dr X
Dear Dr X
What Factors Help People with Learning Disabilities Participate in Evaluation of Treatment and the Therapeutic Relationship in Art Therapy?
Our department is a partner in the above research project which is led by John McCulloch, Senior Art Therapist, XXXX. We are identifying clients who have between 4 and 12 months ago and inviting them to take part in the project.
Keyworkers and carers will be involved in explaining the project to clients. Clients’ involvement would be taking part in a focus group with John McCulloch and discussing their experience of art therapy. The transcripts of the discussions would then form the basis for further qualitative analysis. The project has ethical approval from Lothian Research Ethics Committee and management approval from the Primary and Community Division R & D Committee. I enclose the Patient Information Sheet and Consent Form for your information.
We would be grateful for your help, in order to ensure that clients we have identified are able to give informed consent to take part. We wish to invite the following people, who are your patients, to be part of the project:
Xxxxxxxxxx,
Xxxxxxxx
On the basis of your knowledge of them, do you think that they are capable of giving informed consent to take part in this project? Would you please complete the attached form, stating your opinion. If you wish more information about the research project, please contact me.
Many thanks for your help.
Yours sincerely
XXXX
Lead Art Therapist
What Factors Help People with Learning Disabilities Participate in Evaluation of Treatment and the Therapeutic Relationship in Art Therapy?
On the basis of my knowledge of them, I consider that
Xxxxxxxxxx
Is / is not* able to give informed consent to take part in the above research project.
(*please delete as appropriate)
Signed:
Position:
Date:
Please return the completed form to XXXXX in the envelope provided.
