This paper was originally published in Irish Association of Creative Arts Therapists Journal, Vol. 2, No. 1., 2014, pp. 1-39.
This paper reflects the experiences of a group of researchers from the Music & Health Research Group, Sue, Triona, and Jason, who are undertaking PhD research studies supervised by Jane that are oriented around service user [1] experiences. An overview of the inclusion of service user perspectives is presented with reference to the deeper reflection on a client-centred approach to research developing in health and social care research that is evident in recent music therapy research. Descriptions of service user inclusion within the three projects is provided. As can be seen from each project description, each researcher uses a theoretical base to frame and shape the research study.
Keywords: qualitative research; anti-oppressive; recovery model; music technology; mental health; disability
In spite of evidence that shows involving service user perspectives in planning and evaluation improves health service delivery (Crawford et al, 2011) there is still minimal service user involvement in research studies about healthcare. This might be partly attributed to the lack of involvement of service users in health education, as noted by Higgins et al. (2011).
Service users are sometimes brought in to teach students through sharing aspects of their experience but they are not traditionally given any role in shaping what students in health and social care courses learn, such as giving their perspective within curriculum planning processes to ensure the training programme is relevant to service user needs, capacities and circumstances.
Accreditation procedures for social care and health courses in social work, nursing and medicine, and across all of allied health, do not yet require perspectives from service users to inform the development of curriculum. Therefore it is not surprising that graduates acculturated into an environment where service user voices are rarely heard may not consider including such perspectives when undertaking research or developing new services. This somewhat hidden culture of exclusion of service user perspectives, and equally those in non-professional caring roles, locates privilege and authority in the expertise of the educator or researcher, who arguably cannot effectively either investigate or teach about the needs of people receiving services if they only use their own practitioner experiences as a point of reference. At the same time there are increasing examples from healthcare practice in which service users have been effectively and meaningfully included in developments of new programmes, and in service reviews (e.g. Walker, Emmens, & Simpson, 2012). However, such reports are often described as innovative and include advice and tips about implementation. This suggests that the territory of service user inclusion in service planning and delivery remains new and unchartered for many health professionals.
The limited availability of research that provides information about service user experiences has been described as frustrating for those tasked with developing and implementing inclusive policy in mental health services. In a study of service users experiences of psychotic disorders, Byrne, Davies, & Morrison (2010) lamented that “The lack of qualitative research specifically concerned with users’ priorities and preferences, and the general dearth of other relevant literature from which to extrapolate such concerns, fundamentally limits our understanding of key elements of mental health service provision” (p. 212). Therefore research that brings service user perspectives, and accounts for their inclusion in research about them is currently welcomed.
Turner and Beresford (2005) have identified four key aims of what they have termed service user-controlled research:
1) The empowerment of service users and the improvement of their lives (through both the process and the purpose of research).
2) Being part of a broader process of making social and political change.
3) More equal relations of research production (where the people who carry out the research and are the subject of the research relate to each other on much more equal terms).
4) Being based on social models of understanding and interpretation (like the social model of disability).
(p. vi)
This approach to research differs from a more traditional hierarchical model of research where the researcher is positioned as expert, and the participant or subject participates in the research study under the direction of the researcher or the research assistant, often having no idea what other participants experienced, and having no access to the outcomes of the research.
A service user oriented perspective values the contribution of the research participant not as a person from whom data is extracted but rather someone who contributed information and feedback at each step of the research process.
The inclusion of service user perspectives is positioned as having an “ethics-based and evidence-based” approach to service development and delivery across many health and social care contexts (Thornicroft & Tansella, 2005, p. 1). Tait and Lester (2005) have posited that service user involvement should be better promoted and more frequently facilitated in mental health services because:
Users are experts about their own illness and need for care.
Users may have different but equally important perspectives about their illness and care.
User involvement may increase the existing limited understanding of mental distress.
Users are able to develop alternative approaches to mental health and illness.
User involvement may be therapeutic in itself.
User involvement may encourage greater social inclusion.
(p. 173)
Additionally, it is important to account for service user perspectives as they may be quite different to those of service providers. This difference must be reconciled in order to offer appropriate, meaningful, relevant, and sustainable services. An example is a study of the needs of people in the disability services in the East Coast region of Ireland, which included services users with physical disability, services users with intellectual disability, and carers, service providers, and managers.
"The main findings of this study were that clients wished to receive more creative therapy services, physical activity sessions and relaxation therapy. A third wished to partake in social and recreational services more often. Service providers put more emphasis on physiotherapy, speech and language therapy, occupational therapy and counselling [...] During focus group meetings, carers not only acknowledged the need for therapeutic and rehabilitation services but also stressed the benefit of creative therapy, leisure activities and socializing for clients".
(Boland, Daly, and Staines, 2008, p. 207)
It is interesting that these findings reveal that the service users’ perspectives were different to those of service providers. The service provider perspective seemed to promote what is already on offer rather than considering a wider scope of provision.
This suggests that if we only seek provider perspectives and ignore the consumers of the service we can only gain a partial and incomplete view of the needs and possibilities of the service. We run the risk of continuing with service structures and offerings that perpetuate obsolete delivery models, at best uninteresting, and at worst unresponsive, lacking flexibility or interest in the experiences and wishes of the participants.
Within music therapy, some research has focussed exclusively on service user perspectives. This indicates that music therapy research inquiry is open to a wider scope of knowledge creation than continuing to perpetuate the view of the researcher as sole expert, where the role of research participant is relegated to the role of grateful contributor whose responses to tests and questions will explain the effects and benefits of music therapy. Two recent studies that include service user perspectives are described below.
In a study of the uses and functions of music for adolescents and young adults receiving cancer treatment, interviews with 12 participants revealed that music was used in self-care and as part of managing treatments in a range of ways (O’Callaghan, Barry, & Thompson, 2012). Additionally, for those who received music therapy, not all described it as helpful, and one person described how he preferred one music therapist over another as the first had provided a friendly and flexible service whereas the other had made an appointment time with him, which made him feel like a patient. These reflections about services can be helpful for current and future practitioners and are important points of discussion for training cohorts to consider.
In order to understand the experiences of services users receiving music therapy, Ansdell and Meehan (2010) conducted interviews with 19 service users who were experiencing chronic mental health problems. Each of the people interviewed had attended at least 10 music therapy sessions. The interviews were transcribed and analysed using interpretative phenomenological analysis, and nine themes emerged. Of the most important in the view of the researchers was the emergent theme of hope in the music. As they mused:
"Of all these benefits, “music’s hope” is the profoundest help for people living with acute or chronic mental health problems. Many comments by interviewees can be interpreted as communicating how music and music-making give them both an image and an enactment of a “hopeful” relationship to their chronic illness and its existential impact on their lives."
(Ansdell & Meehan, p. 34)
This revelation that service users described music making as a vehicle for hope can bring courage and revitalisation to the music therapy community.
Practitioners with busy session schedules can find it difficult to reflect with participants on the processes of music therapy; that is whether, how, and why it helps. It is therefore highly useful to be able to lean into such detailed research findings to restore our own hope and invigoration about the meaningful contribution our facilitation can make for music therapy participants.
The following account of the research process for three PhD researchers in the Music & Health Research Group at the University of Limerick offers a perspective on the inclusion of service users in research which may be useful for people about to embark on research, or who are considering such a step in future.
I titled my PhD Giving voice to client choice: An anti-oppressive analysis of music therapy practice and research. At its core, Anti-Oppressive Analysis seeks to address power inequities, promote inclusivity and autonomy, and ultimately cultivate service-user self-determination. The focus of this researcher is to study, locate, and elaborate the philosophy of Anti-Oppressive Analysis within the field of music therapy practice and research, both enriching and challenging the field of music therapy.
“Anti-Oppressive Practice is a heterodox, umbrella term [that] borrows bits and pieces from various theories…. Marxist, Feminist, Anti-Imperialism, Anti-Racist, critical post-modernism, post-structuralism …” (Baines, D., 2011, p. 13). Anti-Oppressive Analysis was first fostered through the educational philosophy, Anti-Oppressive Pedagogy (Jones, 2011; De Lissovoy, 2010; Stern, 2009; Taylor, 1993; Elias, 1994; Facund0, 1984; Friere, 1970; Friere, 1994) and social work model of Anti-Oppressive Practice (Baines, D., 2007, 2008, 2011; Cemlyn, 1999; Collins & Wilkie, 2010: Heenan, 2005; MacDonald, 2008; Mullaly, 2001; Parrot, 2009).
Anti-Oppressive Practice has appeared in several other human services professions including in the medical profession (Thesen, 2005), in nursing (Martin & Younger, 2000; Flood, et. al., 2006; Barnes & Brannelly, 2008; MacDonald, 2008), psychology (Campbell, 2011), sociology/anthropology (Scott, 1999; Gunaratnam, 2008), and in disability studies (Gilbert, et. al., 2007). Recently, anti-oppressive analysis has found a voice in research activities in social work (Potts and Brown, 2005) and education (Kumashiro, 2009). A review of the literature in early 2012 indicated that Anti-Oppressive Analysis had yet to be described in music therapy.
Further investigation has revealed a paucity of publications in critical post-modern models in music therapy with the exception of the following examples. Early roots in music therapy can be found in Kenny’s work in Indigenous Theory (1982; 1985; 1992) and Boxill’s work in peace studies (1988). Other like-minded approaches include Resource-Oriented Music Therapy (Rolvsjord, 2006, 2010), Music-Centered Music Therapy (Aigen, 2005; Brandalise, 2009), feminist perspectives in music therapy (Baines, S., 1992; Curtis, 1990; 1996; 2012; Hadley & Edwards, 2004; Hadley, 2006; Edwards & Hadley, 2007; Hahne, 2011), Culture-Centered Music Therapy (Stige, 2002a) and Community Music Therapy (Bunt, 1994; Ruud, 1998; Baines, S., 2000/03; Baines, S., & Danko 2010; Kenny & Stige, 2002; Ansdell, 2002; Pavlicevic & Ansdell, 2004; Stige, 2002b; Stige and Aaro, 2012). The first piece of writing in music therapy specifically referring to Anti-Oppressive Practice was by Baines, S., (2013).
My research is grounded in over twenty years of practical experience and publications incorporating the service user’s voice (Baines, S., 1992; 1994; 2000/03; 2010; 2013). In my Master’s thesis I critiqued prevalent models of music therapy using a sociocultural and political analysis to examine power structures. I asked music therapy practitioners to analyse their personal motivations for the manner in which they practiced music therapy as a matter of ethics. I also developed and published a Participatory Action Research (PAR) project with adults with chronic and persistent mental health conditions describing a consumer initiated and directed approach (Baines, S., 2000/03). This PAR project was repeated and expanded incorporating an interview process in Baines & Danko, 2010.
In my research I am seeking to study and elaborate the process of developing anti-oppressive conditions designed to prioritize service-user “voice” in music therapy research and practice. The location of the research is the Lower Mainland Area of British Columbia, Canada. Two populations of persons with decreased communication are invited to participate; 1. fragile older adults, and adults with complex care needs, including dementia who are living in long term residential care, and 2. adults and teens with dual diagnoses of developmental delay and mental health needs who are residing in a 90-day psychiatric residential centre for assessment and development of community treatment protocols.
The focus of the research is to amplify their collective voice in the development of ethical client-initiated meaningful, efficacious, and accountable music therapy services.
The elements of the research project are as follows: a literature review to locate Anti-Oppressive Analysis within the field of music therapy; an autoethnographic study where the researcher will reflect on and record her experiences of working with these clients in music therapy sessions as well as any relevant interactions with staff, family, and guardians, including reflection on the research process; and a series of interviews in which residents and the clinical team will be invited to share their views about music therapy. These interviews will be transcribed and processed using a Grounded Theory Analysis.
To date, the ethical review was completed relatively quickly at the long term care facility where research proposal reviews are commonplace. Eight participants readily volunteered and were interviewed including residents, staff, management, and administration. These interviews were transcribed and coded and the categorization process has been initiated. The second site serving adults and teens with DD/MH has required a lengthy ethical review process due to a number of reasons. From the outset, there was no research ethical review process within the organisation. The development of this process has been co-creative with the researcher, the administration on-site, the Unversity of Limerick Research Ethics Committee, and the Quality Assurance Director of the parent organization. It is felt that this intense degree of ethical review is appropriate due to the potential vulnerability of the population served and that the development of this process will serve the service-users in subsequent research projects. To this researcher, this is part and parcel of an anti-oppressive approach. To date, this proposal seems very close to receiving the green light to proceed with the research.
Anti-Oppressive Analysis offers a way of evaluating our work, “a way of addressing the “problems” that our clients present within the context of their socio-political reality and resourcing both ourselves, and persons we serve to address social-inequity toward the goal of creating a socially just future” (Baines, S., 2013, p. 4). Amplifying the service-user voice is the heart of this transformation.
As a member of the Music & Health Research Group, my doctoral research aims to describe the experience of service user participation in music therapy in mental health care. It attempts to bear witness to the views of those who attend music therapy in Ireland and considers the life world of the individual therein. The rationale for this research is rooted in the recovery approach in mental health that emphasizes the need to develop meaningful and collaborative relationships between service users and providers so as to inform healthcare planning and delivery. Such research will not only deepen our understanding of service user experience in music therapy but also consider possible ways through which the mental health community may garner valuable perspectives.
Recovery in mental health is an approach or indeed movement that places listening to service user voices at the heart of its philosophy. It emerged during the 1980’s at a time when people began to voice their experiences of “using” or “surviving” mental health services (Faulkner, 2004). As interest in the service user perspective grew so too did recognition that such perspectives were acquired by virtue of personal experience and that this experience was a form of expertise to be valued and respected. Thus the recovery approach refers to those who are consumers of healthcare services as “experts by experience”, acknowledging that service users have a valuable contribution to make in determining and deciding upon their own care pathways in collaboration with mental health professionals who are experts by skill and/or training.
Anthony (1993) describes recovery as developing a new meaning and purpose in one’s life beyond the catastrophic effects of mental illness. Shepherd, Boardman and Slade (2007) emphasize the importance of finding and maintaining hope, re-establishing a positive identity, and taking responsibility and control as one journey’s towards wellness. It is important to distinguish mental health recovery from “clinical recovery”. As implied from the descriptions above, mental health recovery is a deeply personal and idiosyncratic journey that is embarked upon by the service user. This is different to clinical recovery that emerged from medical discourse of mental health professionals that involves being free of symptoms, restoring social function and “getting back to normal” (Solli, Bonde, Pedersen, Hannibal, & Lund, 2012).
Recovery promotes concepts such as hope, voice, meaning, confidence & control, personal resourcefulness, positive self-image and identity, self-determination, trust in self and spiritual connection (Mental Health Commission, 2007). These central tenets of recovery deeply resonate with a humanistic and empowering approach to healthcare that encourages a sense of personal agency among service users. This is in contrast to more paternalistic or traditional healthcare models that venerate the expertise of mental health professionals, sometimes overshadowing a service user perspective.
The need for mental health provision that values the inclusion of service user perspectives and feedback is highlighted by both statutory and voluntary mental health bodies in Ireland. The Mental Health Commission, Mental Health Reform, Irish Advocacy Network are examples of agencies that recognize and value a recovery model of care. These not only advocate the involvement of service users in designing their own treatment plans but also the inclusion of service users at each and every stage of health care planning and delivery as described in A Vision for Change, the policy document that defines the future of mental health provision in Ireland. Indeed, the service user literature encourages us to move away from the idea of involvement being a “good thing” to involvement as being a right in a democratic society (Stickley, 2006).
Acknowledging the lived experience of service users in quality mental health provision requires looking beyond symptomatic measurement, casting a wider net of inquiry that captures experiences and opinions of those the service is designed to serve.
Research into music therapy and mental health has largely focused on clinical symptom management and reduction of these symptoms (Edwards, 2006). This has been an essential key in justifying the inclusion of music therapy as a “treatment” within mental health services. However, service user perspectives have featured minimally but are an emergent theme of interest. An early example of such perspective includes that described by Heaney (1992), who found that service users significantly rate music therapy in terms of pleasure and viewed the intervention to be just as important as any other aspect of their care. Dye (1994) evaluated music therapy in a mental health setting by asking service users to complete a questionnaire [2]. The results not only provided insight into how music therapy impacted upon individuals but also illuminated the components of sessions that were highly regarded by clients.
In Ansdell and Meehan’s study (2010), it was found that service users did not necessarily experience, nor value, music therapy in the way therapists, referring clinicians, and researchers defining “outcomes” and “effectiveness” may perhaps anticipate. These findings are thought provoking and remind us that the understood intention for and outcomes of music therapy may be quite different when perspectives of service user and provider are considered.
The primary goal of my doctoral research is to successfully and meaningfully include the perspectives of people who have mental health difficulties about their experience of attending music therapy in public mental health services in Ireland. The project will highlight ways in which music therapy participation is described and the findings will be used to recommend processes for service user involvement in mental health care. These goals will be realised through verbal and non-verbal methods of data collection, namely verbal interviews and arts-based focus groups. The findings and views gained from each of these data streams will be used to describe the life-world of the individual in music therapy whilst also evaluating interview and art-based methods as a means of giving voice to the service user perspective.
Last Autumn/Winter 2012 the National Centre for Arts & Health, Tallaght Hospital, facilitated me to carry out a series of research interviews with music therapy service users of the psychiatric-inpatient unit. Six participants agreed to be interviewed and were asked to reflect upon their experiences of attending music therapy at the unit. These interviews provided in-depth, rich descriptions of people’s life-world in music therapy. Analysis of this data is now nearing completion using interpretative phenomenological analysis as a means of honouring and getting as close as possible to subjective experience. The findings from this phase of the research will make a marked contribution to the existing service user descriptions of music therapy in the literature. However, no study to date has examined participant’s experiences of music therapy using non-verbal methods. This is surprising, given that music therapy is frequently offered to mental health service users because of its capacity to offer a non-verbal means of communicating with others. Therefore, in further developing this research it is proposed to employ arts-based methods to illuminate individual and group perspectives about people’s experiences of music therapy. Such methods are increasingly used in qualitative healthcare research to include the views of marginalized service user voices by utilizing the expressive properties of art genres to contribute to human understanding (Barone & Eisner, 2011; Ledger & Edwards, 2011).
Realising recovery through listening to and witnessing the views of experts by experience is paramount to this research. Findings from these multiple perspectives will be relevant to the profession of music therapy and to other allied health care professions who wish to encourage meaningful service user involvement in health care delivery. They will not only describe the life-world of people’s experience in music therapy but also explore some of the ways in which such life-worlds may be elicited.
I am currently engaged in a participatory action research (PAR) project with adults with physical and intellectual disabilities. This collaborative research has arisen out of seven years of clinical work based on person-centred principles and focuses on our use of mainstream music technology in our work together. The service users are co-researchers on this project and we work as a team to design the research around shared concerns towards immediate and tangible benefits. PAR is a collaborative method of inquiry offering practitioner-researchers an ethical way of exploring and developing insight into practice (McLeod, 1999) by placing the client/service-user/consumer voice at the centre of the inquiry. This is an empowering and emancipatory approach to research which has been especially embraced by those in the field of disability studies (Goodley and Lawthom, 2005; Elefant, 2010).
I have been facilitating a music therapy programme in two facilities for adults with physical and intellectual disabilities run by a national service provider for over seven years. The services are provided according to the person-centred planning model (PCP) (Noone, 2008). The principles underlying this model are highly congruent with the humanistic, resource-based approach that is the basis of my work.
The common focus on individual capacities, collaboration, and community engagement to promote positive change means that a collaborative person-centred approach to providing therapy has not just been personally satisfying (Ledger & Noone, 2011), it is supported by the organisational ethos of the service provider.
This offers opportunities for a coordinated approach to maximise the voice of the service users in defining, planning for and reaching their goals.
As the programme has developed, the use of music technology within sessions for improvisation, composition and song recreation has become commonplace. From simple beginnings, with a basic interface that included a microphone, sound card and audio software, a bank of equipment is now part of our programme. The ubiquity of music technology seemed to be due to the appeal, accessibility and adaptability of the available hardware and software, which includes audio devices such as microphones and electric guitars, mainstream MIDI devices and audio production software, as well as integrating assistive technology devices such as switch interfaces. Video game controllers and iPad/iPhone apps are more recent additions. The digital audio software we favour – Ableton Live – has a range of instrument sounds and effects and can be used to create various genres and moods. It also offers user-friendly and intuitive options for transducing MIDI messages to multiple parameters within the software as well as allowing the triggering of audio and MIDI loops.
Working together, we have developed individualised interfaces for service users intended to optimise purposeful motion and aesthetic preferences. There has been a high degree of collaboration in the sense that I am by no means an expert with these resources, and we often create applications of the available technology in our meeting times. A high degree of control and creativity has been possible for service users through the flexibility and intuitiveness offered by the hardware and software at their disposal. It became more and more commonplace for service users to choose the configuration their own interfaces (input/processing/output) with less and less help from me. Given that many acoustic or traditional instruments can be difficult for people with physical disabilities to manipulate, the accessibility and control offered by music technology can, based on my observations and feedback from service users, enhance access to musical expression, thereby facilitating the music therapy process.
My initial research interest focus was how to optimise or formalise the use of mainstream music technology, particularly MIDI-based devices and software to improve accessibility to music for people with disabilities. When the opportunity came to develop a PhD proposal, it seemed that since the development of the initial research question arose from collaboration and active learning, then the investigation of this question should be collaborative also. For this reason, participatory action research was chosen as the most appropriate form of investigation. Participatory action research, having a particular congruence with Community Music Therapy (Stige, 2005), has been used by music therapists, in schools (Hunt, 2005), community choirs/disability groups (Elefant, 2010) and in prisons (Tuastad, ongoing).
Participatory action research is a collaborative research method used in diverse contexts such as industry, health promotion, community development, education, disability studies, human geography and music therapy. As a form of applied research conducted “with people rather than on people” (McTaggart, 1997), PAR seeks immediate socially relevant effects for participants. Although there is no single way to implement PAR as a methodology, White, Suchowierska and Cambell (2004) have identified core features common to most PAR projects:
1. Meaningful consumer involvement in all phases of research.
2. Power-sharing between researchers and consumers.
3. Mutual respect for different provinces of knowledge.
4. Bidirectional education of researchers and consumers.
5. Conversion of results into new policy, programmes or social initiatives.
PAR projects involve a spiral of steps of planning, acting, observing and evaluating around a general idea of improvement or change known as the “thematic concern” (McTaggart, 1997). As a “meta-methodology” (Dick, 2002; cited in Altrichter, Kemmis, McTaggart & Zuber-Skerritt, 2002), PAR can incorporate quantitative or qualitative methods as long as the participants are in control of how design, implementation, data analysis and dissemination occurs. Data collection methods are flexible and attuned with local, cultural, economic, and political conditions (i.e. they are context specific), and refined in light of insights gained from previous cycles (Altrichter et al, 2002). The research is necessarily iterative and unfolds as new understandings and insights are gained (Stevenson, 2010).
Disability research has advocated using participative methods, as a way of giving a stronger voice to people with disabilities in matters that concern them (Stevenson, 2010), especially when more traditional research approaches to disability may not prioritise immediate benefits, interventions or insights (Whyte, 2002). Participatory action research sits well alongside the research philosophies of community psychology and disability studies due to its contextual sensitivity, emancipatory nature and focus on tangible benefits for participants as well as a common reference to the social model of disability (Goodley and Lawthom, 2010; Priestley, 1997).
Much in the theory and philosophy of Participatory Action Research resonated with my own values, corresponds with the organisational ethos of the proposed research site, and mapped quite naturally and non-intrusively onto our way of working in sessions. Reason and Heron’s Participatory Inquiry Paradigm offered important concepts to consider as the research unfolded, in particular, the epistemological notion of a participative world view encompassing multiple ways of knowing:
Experiential knowing – through meeting and encounter.
Presentational knowing – through the use of aesthetic, expressive forms.
Propositional knowing – through words and concepts.
Practical knowing – the exercise of diverse skills whether intrapsychic, interpersonal, political or transpersonal.
(Reason and Heron, 2001)
An epistemological position that acknowledges multiple forms of knowing felt appropriate to our research context, particularly in light of the diversity among the proposed research groups and our tendency to use free music making as the basis of our relating within sessions.
The option of using non-propositional methods, performance, video-analysis, multi-media and other arts-based methods corresponded with established ways of working. While these were not guaranteed to be the methods the group would choose, they provided promising options. Arts-based research methodologies have been employed in collaborative research projects as a way of acknowledging multiple forms of knowing (Liamputtong & Rumbold,2008; Daykin, 2008; Conrad & Campbell. 2008). To date, they have not been used in music therapy in any elaborated or developed way though some recent publications have pointed to their potential (Ledger & Edwards, 2011).
In the case of our PAR project, there was a high degree of enthusiasm to explore what we had been learning (explicitly or tacitly) over the previous years with a view not just to improve our practice, but to share knowledge and demonstrate skills to the broader community. This enthusiasm has translated into ownership and agency within the research process as the two research teams evolve from communities of practice to communities of inquiry (Reason and Heron, 2001).
From the very beginning, service users have been active in each part of the research process. Consent is treated as a process involving repeated checking in with participants (Etherington, 2007). This is consistent with PAR as participant input is essential in refining the research to ensure tangible benefits are achieved. In initial consent meetings personal goals such as developing confidence or teamwork skills, or practical goals such as learning more about the software or just “playing more music”, as well as emancipatory goals such as showing music skills to the broader community were all considered valid benefits to aim for with PAR.
In orientation meetings, service users expressed diverse interests and perspectives regarding our use of technology, but ultimately the group came to a consensus that a public performance showcasing individual skills would acknowledge and incorporate everyone’s goals. Sessions closely resemble PAR cycles as follows:
Planning: setting up equipment, recapping insights and ideas from past sessions, generating new ideas.
Action: improvisation or song recreation, adapting and refining choices along the way.
Reflection: discussing what worked or didn’t work, reflections on the music or issues relating to the thematic concern – the public concert.
Interesting themes and patterns began to emerge which we discussed as the cycle evolved. These were:
“Less talk – more action” – the tension between propositional and presentational/experiential knowing was often present, as some participants preferred to talk and discuss while others preferred to get on with it, that is, with making music. The group worked hard to acknowledge and balance these perspectives.
“Chaos” – we encountered frequent technical issues as well as having to negotiate the musical chaos of up to nine people playing at once. The importance of listening was reiterated by participants in terms of working towards a coherent public performance.
Humour and Support – this was very noticeable when difficulties were encountered with the technology. As a facilitator, I found the atmosphere of the group to be very conducive to reflecting on problems and developing creative solutions.
Pride, ownership and agency – whether through developing individualised applications or by trying out different interfaces on a regular basis, there has been a strong sense of pride in the agency offered by music technology and a strong desire to demonstrate this agency to friends, loved ones and the community at large.
Sessions were recorded on video to document verbal, paraverbal/physical and musical interactions. While a general thematic concern has been identified and worked on within the group, data analysis procedures were not really developed until the last few weeks. As such, I would characterise the three months of work as a proto-cycle or extended development phase. The notion of an arts-based response to the videos and recordings was initiated by a participant and developed by the group. The goal is to tell the story of our first phase of work towards the public concert using our musical recordings and voice samples from the videos. We are currently transitioning into our second PAR cycle in which we will evaluate cycle one and use any insights arising from the evaluation to plan what we will do next.
As can be noted from the three projects, the Music & Health Research Group is highly committed to the inclusion of service user voices in the research process. As a group, we value what service users bring to shape and direct the research process. These research studies introduce a critical awareness to music therapy research and allow the development of a new paradigm of research within health and disability services.
If we understand the role of the service provider as responding to the needs of those who access services in healthcare, education, and disability care provision then we must account for the voices of the users of these services, listening carefully to their wishes, and hopes and dreams.
Without this perspective we risk becoming fossilised into a way of working in which the only reference points for evaluation are self-generated, and self-perpetuating.
Jane Edwards,
PhD RMT,
University of Limerick, Ireland,
Deakin University, Victoria, Australia
Jane Edwards is a qualified music therapist with an international reputation as an expert in parent-infant attachment. She is President of the International Association for Music and Medicine www.iammonline.com
Email: jane.edwards@ul.ie
Tríona McCaffrey, MA MT, BA, Psych Dip
University of Limerick, Ireland
Tríona McCaffrey is a lecturer on the MA Music Therapy programme, Irish World Academy of Music & Dance. Her research interests focus on the area of music therapy and recovery in mental health.
Email: triona.mccaffrey@ul.ie
Jason Noone
University of Limerick, Ireland
Enable Ireland
Jason Noone is active in clinical work, training/supervision and research and is a member of the Music and Health Research Group at the University of Limerick. His work is mainly in the area of developmental disability and his research interests include sensory integration, music technology in therapy and participatory action research.
Email: jasonnoone.mt@gmail.com
Susan Baines
University of Limerick, Ireland
Susan Baines is a PhD Candidate at the University of Limerick. She has extensive eclectic music therapy experience working with persons with a broad spectrum of physical, emotional, social, and spiritual concerns in a variety of clinical and community settings across Canada as well as in the United States and South Africa and has published in professional journals. She has practiced music therapy in Vancouver since 1994 and teaches piano in the Bachelor of Music Therapy program at Capilano University in North Vancouver.
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[1] The term service user is employed here with the recognition that although it is increasingly in regular usage in a range of health and social care contexts, it has attracted criticism of its relevance and applicability (McLaughlin, 2009).
[2] Jane: as the supervisor of this project for a final year project for a music therapy student in Australia it is lovely to see that after all these years it is included in Tríona’s literature review.