Doing participatory case study work with groups
Music in Mind: Understanding the ‘in the moment’ musical experiences of people living with dementia in a group setting
Music in Mind
Understanding the ‘in the moment’ musical experiences of people living with dementia in a group setting
Robyn Dowlen, Lucy Geddes, John Keady, Christine Milligan, Nick Ponsillo and Caroline Swarbrick
Introduction
This chapter presents a participatory case study which was used to understand ‘in the moment’ embodied and sensory experiences of a group of people living with dementia engaging with a creative music-making programme (Manchester Camerata’s Music in Mind - www.cameratacommunity.co.uk/dementia/). Presently, the dominative narrative within the music and dementia literature is biomedical in nature. Here, music is considered as an ‘intervention’ of which success, or failure, is measured against the reduction of a range of ‘behavioural and psychological symptoms of dementia’ (BPSDs), such as a lessening of the signs of agitation (de Medeiros and Basting, 2014), typically following a time-limited music-based intervention programme (van der Steen et al., 2018). The primary outcomes of music programmes - usually relating to BPSDs - are predetermined by researchers and/or clinicians, which leaves the subjective musical experiences during the period of engagement largely ignored (DeNora and Andsell, 2014). Qualitative research, however, points to the value of‘in the moment’ experiences, which family carers, professional carers and music therapists report as being significant and meaningful for people living with dementia (Dowlen et al., 2018). Although the term ‘in the moment’ has been used extensively in the context of music programmes for people living with dementia, there has been very little formal exploration of such experiences to date. Thus, the main aim of the research was to understand musical experiences using an ‘in the moment’ lens, placing focus on the embodied and sensory experiences in order to develop a new framework for understanding the benefits of music for people living with dementia.
Background
This research was conducted as part of an Economic and Social Research Council (ESRC) funded CASE PhD studentship which brought together academic partners (The University of Manchester and Lancaster University) and industry experts (Manchester Camerata and University of Chester) as supervisors for the doctoral research project under-taken (and facilitated) by the lead author of this chapter. A CASE studentship involves a student working in partnership with an organisation in order to undertake research that is designed to promote interdis- ciplinaiy conversation, bridging academic and professional research concerns. The partnership between The University of Manchester, Lancaster University and Manchester Camerata began in 2014 when members of the PhD supervision team (John, Christine and Nick) came together at an NHS Research and Development Forum and discussed the limitations associated with the way in which the impacts of music for people living with dementia are defined and measured.
The research methods used in existing studies tend to rely on understanding the benefits of music from the perspectives of family carers, paid carers and clinicians rather than valuing the insights of people living with dementia as experts by experience (Dowlen et al., 2018; Elliott and Gardner 2018). This was why the choice of a participatory case study design was seen as being most appropriate to the aims and objectives of the research, enabling the opportunity for the collective and shared voices of people living with dementia to be placed centrally within the research. The use of video methods in the context of the group music-making contributed significantly to the active involvement of people living with dementia in this research (Cook, 2003; Capstick and Ludwin, 2015; Capstick et al., 2016), enabling exploration of‘in the moment’ sensoiy and embodied experiences which could be interpreted by a researcher (through observation and analysis) as well as by people living with dementia (through the video-elicitation interviews). This created many layers within the analysis, enabling a collation of verbal accounts from people living with dementia as well as the interpretation of their embodied experiences within the context of Music in Mind (Kristensen, 2018). Video also provided an opportunity for those even in the more ‘severe’ stages of dementia to be active research participants, allowing for the exploration of emotional, sensorial and bodily experiences in the context of specific musical events (Campbell and Ward, 2017; Kindell and Wilkinson, 2017).
Building on these insights and observations from the current music and dementia literature, this chapter will seek to examine the role of video-observation and video-elicitation interviews in the context of a group participatory case study setting. Based on the process and findings from this research, we suggest that the use of video within the context of participatory case studies enables opportunities for the experiences of people living with dementia to be centralised and complemented by the views and perspectives of those who have been the central voices in the research literature to date, i.e. family carers, paid carers and clinicians.
Research context: Music in Mind
Manchester Carnerata’s Music in Mind is a music-therapy based programme for people living with dementia and their family carers or those supporting them itr a professional capacity. It is a time-limited 15-week programme in which the same group members attend each week to ensure space for musical development as well as an opportunity to develop connections with other group members. Music in Mind was first piloted in Greater Manchester in 2012 in a community setting (Habron, 2013) and, since its inception, has engaged with over 1500 people living with dementia in North West England. Music in Mind has been delivered in community settings, day-care centres, care homes, housing schemes and hospital wards. The programme is co-facilitated by a music therapist and a Manchester Camerata musician, combining the therapeutic skill of the music therapist and the high level of musical skill of a professional musician (Habron, 2013). This principle of co-facilitation enables a music-making space which is defined by creativity rather than specific therapeutic outcomes alone. Thus, the aims of Music in Mind for people living with dementia are to:
i. Improve the quality of life of people living with dementia
ii. Develop musical interaction
iii. Improve the ability to communicate (both verbally and non-verbally)
iv. Reconnect relationships between people living with dementia and their family carers and/or to develop relationships between other people living with dementia or those supporting them in a professional capacity
v. Develop the skills of family carers and/or those supporting people living with dementia in a professional capacity to use improvisational techniques outside of the Music in Mind sessions
The principles of Music in Mind afford a context where the person living with dementia is given choice and the opportunity to be creative within the sessions. Musical improvisations, using tuned and un-Uined percussive instruments as well as the person’s own vocalisations, are supported by the project practitioners, enabling the person living with dementia to situate themselves in a supportive musicmaking environment where their musical contributions are heard, responded to and valued.
The following section will provide an overview of the Music in Mind group members who took part in the study, introducing each person living with dementia and then focusing on the application of the creative research methods in the context of the overarching participatory case study design.
Research group
The research group consisted of six people living with dementia, four family carers, two project practitioners and the lead author (Robyn) acting as the academic co-researcher. All group members’ names, other than the Robyn’s, have been changed and agreed pseudonyms used to protect the identities of participants in line with the ethical permissions and smdy protocol (for further information see Dowlen, 2019, and additional development later in this chapter). Four of the people living with dementia attended with then family carers (Scott, Henry, Phillip and Carol), and two attended by themselves (Mary and Sam). The following section will provide a brief overview of each group member, highlighting each person’s musical experience, life story and attendance across the 15-week programme. All participants were living at home in the community at the time of recruitment. This section will also introduce the music therapist and musician who co-facilitated the Music in Mind group.
Scott and Julie: Scott (living with dementia) and Julie (Scott’s wife) attended all 15 Music in Mind sessions across the duration of the programme. Scott and Julie had been married for more than 50 years, having met as teenagers during a camping trip. Scott was diagnosed with Alzheimer’s disease in 2010 after experiencing difficulties with his short- and long-term memory. Scott and Julie had a lifelong appreciation of music, but neither had received any formal musical training.
Henry and Jenny: Henry (living with dementia) and Jenny (Henry’s wife) attended 12 Music in Mind sessions across the duration of the programme. Henry and Jenny had been married for over 30 years and had met when studying at university. Henry was diagnosed with posterior cortical atrophy in 2013 after experiencing challenges associated with shoit- and long-term memory, as well as visual hallucinations. The journey to receiving a diagnosis was challenging for Henry' and Jenny, with initial diagnoses being relating to stress and depression. Henry' and Jenny had not received any formal musical training within their lives but had been active members of a number of choirs before Henry’s diagnosis.
Phillip and Esther: Phillip (living with dementia) and Esther (Phillip’s wife) attended 11 Music in Mind sessions across the duration of the programme. Phillip and Esther had been married since 2010, having met when Esther visited family in Ghana. After they were married, Phillip moved to the United Kingdom to live with Esther. In 2013, Phillip was diagnosed with dementia with Levy bodies after getting lost on his way home from work on a number of occasions. He found his diagnosis very distressing and became very withdrawn as a result. Neither Phillip nor Esther had any formal musical training but had both been active members of their church coimmmities where music was central to their worship practices.
Carol and Richard: Carol (living with dementia) and Richard (Carol’s husband) attended 11 Music in Mind sessions across the duration of the programme. Carol and Richard were a married couple and had met when Carol had attended an adult learning programme that was led by Richard. Carol was diagnosed with y'oimg onset Alzheimer’s disease in 2013 and her diagnosis has brought with it increased anxiety and a loss of confidence in her own abilities. Neither Carol nor Richard had received any formal musical training but had continued to be members of a number of choir s throughout their' fives. They had also been part of a ‘record collective’ in the 1980s, hosting music nights and showcasing their favourite records.
Mary: Mary (living with dementia) attended 12 Music in Mind sessions across the duration of the programme. She attended the sessions by herself as her husband was unable to join her. Mary' was born in Nigeria and had moved to Manchester more than a decade ago to pursue her career as a nurse. Mary had strong Christian beliefs, with spirituality, the church community and evangelism being key parts of her self-identity. Music, specifically religious music, was a key part of Mary’s life, with her being an active member of her church choir for many years. Mary was diagnosed with young onset dementia in 2014 after her husband noticed changes in her short-term memory. Mary struggled to come to terms with her diagnosis and felt as though many of her friends had deserted her as a result.
Sam: Sam (living with dementia) attended 12 Music in Mind sessions across the duration of the programme. Sam was accompanied to the venue by his paid carer but he was unable to stay as he supported another gentleman who was unable to take part in the sessions. Sam was the only member of the group who did not take part in a video-elicitation interview due to challenges associated with coordinating an appropriate time with his carer. Therefore, we were able to obtain very little information regarding Sam’s life history beyond his diagnosis of young onset Alzheimer’s disease in 2013 and what was learned about his musical interests within the context of the Music in Mind sessions.
Barbara and Nicola: Barbara (music therapist) and Nicola (Manchester Camerata musician) were the project practitioners who co-facilitated the Music in Mind programme. Both Barbara and Nicola had experience in delivering this programme in community settings and had also undertaken it in the care home environment. Their motivations for being involved with the Music in Mind programme were driven by their own personal experiences of caring for a relative living with dementia. Barbara and Nicola had co-facilitated Music in Mind programmes for three years at the time of the study.
Methods
The following section will provide an overview of the visual research methods which were used under the umbrella of the participatory case study design, namely video-observation and video-elicitation interviews. The following section will give an overview of each of the three participatory methods that were used within the participatory case study design.
Video-observation
Video-observation contributes to a multisensory account of a given context as it enables a researcher to capture more detail surrounding behaviours, processes and interactions, particularly when there is more than one individual to observe (Asan and Mantague, 2014). In the context of dementia studies, some researchers seek to use video as an objective measure of behaviours, however, this research used video as a tool for knowledge construction surrounding embodied and sensory experiences of people living with dementia (Campbell and Ward, 2018). Furthermore, the use of video afforded the opportunity to engage with group members in a more participatory manner (Cook, 2003; Capstick el al, 2015, 2016), a process that enabled the voices and bodies of people living with dementia to be more centralised within the research design and reporting (Cook, 2003; Campbell and Ward, 2018).
Figure 9.1 Recording frame of the two fixed-position video cameras.
In the context of this participatory case study, Robyn situated herself with three video cameras across the duration of one Music in Mind programme (15 sessions). Two of the cameras were fixed point and stood on tripods in order to capture the two hemispheres of the music-making circle which was created around the instruments available to participants (see Figure 9.1). These fixed cameras, therefore, allowed for the video recording of the two hemispheres of the circle, as well as capturing interactions that occurred in the centre of the circle. The third camera was operated by hand by Robyn and was used to provide more detail relating to facial expression and embodied gestures. Robyn actively took part in the Music in Mind sessions through playing instruments and singing with the group, which enabled the development of a stronger rapport with group members instead of sitting on the extremities of the circle as an ‘outside’ observer.
The value of recording the musical atmosphere created and experienced by people living with dementia within the context of Music in Mind was twofold. First, it provided an opportunity for Robyn, and the wider research team, to return to ‘a moment’ as often as was required outside of the context of the sessions and to interpret the ‘in the moment’ embodied and sensory experiences of people living with dementia. Second, it provided elicitation material which was used in the context of the video-elicitation interviews, and where an additional layer of interpretation was provided by people living with dementia, their family carers and project practitioners in order to obtain greater depth and validation for the emerging findings.
Video-elicitation interviews
Video-elicitation interviews can be defined as the process of using video of a given context of interaction to draw out deeper discussion about an experience than would be granted by a traditional research interview (Henry and Fetters,
2012). In between the Music in Mind sessions, participants were invited to take part in video-elicitation interviews within their own homes as individuals or as a couple. The primary purpose of the video-elicitation interviews was to enable participants to return to ‘a moment’ through the use of the video as a prompt and basis for reflective discussion. Robyn pre-selected exceipts of video to explore within the context of the interviews. The decision making which informed the selection of the video was guided by Robyn deciding on exceipts of the video which were interpreted as having an ‘in the moment’ benefit for the person living with dementia, or when there were moments of ambiguity which required further clarification or reflection surrounding the experience.
The first video clip that was shown in the interviews was of the ‘Hello Song’ that began each Music in Mind session, and it was used to orient the group members to the focus of the interview. In the majority of interviews, the couple/indi- vidual and Robyn sang the ‘Hello Song’ together and this provided a way of ‘warming up’ to the interview method. The singing of the familiar melody signalled recognition of the song outside of the context of the music-making space and highlighted the need to consider the data generated in the interview beyond spoken words, e.g. pointing, foot tapping, smiling and laughing. As there was a wide range of communication abilities and styles represented within the group, video provided a platform for discussion which elicited a greater response from people living with dementia than a traditional semi-structured interview may have afforded. This is something that has been observed within the wider literature which uses video-elicitation interviews and strengthens the use of the approach as a method that can elicit alternative forms of communication in populations who may have challenges engaging with more traditional qualitative methods (e.g. Morris et al„ 2015; Kaley et al., 2019).
Overall, the combination of methods enabled the exploration of multiple perspectives, whilst keeping the voices of people living with dementia central to the research. The application of these methods, and how the data generated were analysed within the context of a participatory case study design, will be discussed further in the following sections.
Analysis
The data analysis was iterative and occurred over several stages. Embedded across all stages of the analysis was the use of embodied and sensory lenses (Kontos, 2004, 2005; Pink, 2013). This enabled an examination of not only what was said by people living with dementia, but how they interacted with music through then bodies and how they presented elements of then experience through then embodied selfhood (Kontos, 2004, 2005). This was an important part of examining ‘in the moment’ experience and was influenced by Pink’s (2015) approach to analysis which privileges sensory and embodied experiences through the analysis of visual data.
The first stage of the analysis was to build individual narrative case studies for each person living with dementia. These case studies focused on embodied and sensory experiences that were derived by reviewing the video data using a microlevel analysis of the data and understanding these experiences hi the context of the transcripts of the video-elicitation interviews and participant diaxy entries. The second stage was underpimied by Braun and Clarke’s (2006) thematic analysis approach to data analysis. This process included a more structured examination of the data through line-by-line coding of the transcripts of interviews, diaries and individual case studies. Additional information about the analysis process is in Dowlen (2019).
Ethical considerations
This research was approved by the Social Care Research Ethics Committee (Ref: 16/IEC08/0049). It did not exclude participants if they were lacking capacity and, instead, sought to be as inclusive as possible for people living with dementia. Thus, ethical approval was sought from the Social Care Research Ethics committee who specialise in reviewing social care research study proposals in accordance with the Mental Capacity Act (Department of Health, 2005), including the review of studies involving individuals who may not have capacity to consent for themselves, which was the case for this study.
Conducting paxticipatoiy case study work in a group setting presented a significant number of ethical challenges which had to be addressed within the research protocol and supporting documentation. The most significant ethical challenge was the use of video data collection methods within the group context of Music in Mind. For those who were assessed as not having capacity, a persoxxal consultee had to be ixonxinated who would receive an information sheet detailing the ainxs of the research and a personal consultee agreement form. Detailed distress and abuse protocols were developed to ensure that people living with dementia included in the research were protected.
A process consent nxethod (Dewing, 2008) was used in order to assess the capacity of people living with dementia across the duration of the research prograimne. This method acknowledges the fluctuatiixg nature of capacity aixd ensures that capacity is measured over the course of the research process. The nxethod also acknowledges ‘that ethical decisions and actions are context specific and centred on interdependence within a eating relationship and ackixowledges that capacity is situational’ (Dewing, 2008, p.10). This meant that coixsent was assessed across the different situational contexts in the research (Music in Mind vs interview visit at honxe) and the role of the family carer in the consenting procedure was acknowledged thr oughout. Robyn assessed capacity across the duration of the programme, from the first contact between herself and each group member and within the different research contexts.
We developed detailed information sheets, coixseixt forms and a research protocol in order to ensure the ethical delivery of the research programme. However, embedded in this protocol was a degree of flexibility which recognised the ethical challenges that needed to be navigated and negotiated within the field context, and which were unanticipated when developing the protocol. For example, although all those who were in the room had consented to be included within the study, there were times when members of the public, possibly intrigued by the music being played within the ‘private space’ of the community centre, looked into the space through the windows at the back of the room. This resulted in their images being captured by the video cameras. After observing this when reviewing the video in successive weeks, Robyn decided to close the blinds in order to prevent this happening at future recordings. However, this may have created an artificial barrier to the outside world for the group, with their creativity and ownership of the music being confined only to the room in which it occurred.
Another challenge relating to visual ethics came when beginning to anonymise the data for presentation within published work. In editing the images, Robyn tried a number of image manipulations in order to find the best possible way to ensure anonymity whilst also presenting the people living with dementia, and other group members as individuals with identities. By blurring the images, or placing shapes to obscure faces, it felt as if we had stripped the group members of their individuality (Wiles el a!., 2012). It also made it very difficult to present the images as illustrations of sensory and embodied experiences which was one of the primary objectives of the research study. The images were, therefore, inverted and edited to be in black and white, which allowed some facial expression to be maintained and for the individual personalities and experiences of the group members to remain at the forefront of the presentation of the findings (see Figure 9.2).
To make sure that these actions met with the participants’ approval, Robyn returned the anonymised images back to the group members in order to gain their authorisation to use the images within the study as well as any subsequent publications (a condition of the approved ethical application). Although group members had consented to the use of their images and pseudonyms at the outset of the research study, as a team we wanted to ensure that they were satisfied with the way in which Robyn had anonymised their images. All participants were happy
Figure 9.2 Examples of the anonymised images taken from video stills.
for their images to be used and shared in Robyn’s PhD thesis (Dowlen, 2019) and any subsequent publications.
Although there were inevitable challenges associated with visual ethics, there were strengths which were observable within the context of the research. For example, the video cameras acted as a visual cue for participants when in the context of Music in Mind, something that had also been noted by Cook (2002). Although Robyn asked each participant for their agreement before turning on the cameras, the presence of them throughout the session was a reminder of the presence of research equipment within the environment. Whilst there were no instances where the cameras were asked to be firmed off at the request of a participant, or any instances of distress which warr anted the cameras to be stopped, the presence of the cameras within the musical circle enabled the research to be more overt than traditional participant observation may have been. This is something that has also been observed in the wider literature that situates video within everyday contexts (Cook, 2002; Kaley et al., 2019).
Participatory case study in a group setting: Two examples
This section provides two examples of how the video methods used within the participatory' case study enabled a greater degr ee of involvement by people living with dementia. These examples are drawn from two of the six case studies: Scott and Mary. The section (and the subsequent section on reflexivity) adopts a first- person account from the researcher and lead author of the chapter, Robyn, in order to contextualise the experiences held both by both people living with dementia and the researcher.
Scott
Scott was a member of the Music in Mind group who was assessed as not having capacity to consent at the outset of the study. I worked closely with his wife Julie in order to give Scott information about the study and she provided a personal consultee agreement on his behalf in order to take part in the study. Scott and Julie were the first couple that were interviewed outside of the context of Music in Mind. When I arrived for the first interview, I was warmly welcomed into their home by Julie who showed me through to their living room. Scott was sitting on a sofa, looking out of the window, and appearing disconnected from his environment. This was something that took me by siuprise as the moment he entered the Music in Mind space every week, Scott was energetic and eager to take his seat in the music circle.
I sat next to Scott on their sofa and said good morning to him. He returned the comment but continued to look out of the window. Julie reminded Scott who I was and then began to speak about how magical she believed the Music in Mind programme was. At this point, Scott became more engaged with the conversation and began to look over at Julie and me. I asked Scott if he was happy to watch some videos that I had filmed during the Music in Mind group, and he agreed. We positioned ourselves around my laptop at their dining room table and I started the interview with a video of the Hello Song. On hearing the Hello Song, Scott began to tap his feet and sway in time with the music, as I had so often observed within the context of the Music in Mind sessions. He sang along with the video, looking towards Julie which resulted in her linking her arm through his and putting her head on his shoulder. Whilst not a publicly affectionate couple, the opportunity to experience this music together within their own home perhaps gave them an opportunity to be more affectionate with each other than I had observed them to be in the more public setting of Music in Mind.
After we had watched the Hello Song together, I asked Scott some questions about why he enjoyed the song so much:
Scott: Yeah I do, I do like that song actually.
Robyn: What makes you like it so much?
Scott: Err it’s ... it’s hard to judge though int it? In the sense of I’ve been with groups of people before or you know.
Julie: I don’t think he can put it into words.
Scott: No, no, no, no.
Robyn: That’s ok, that’s ok.
Julie: But you like joining in don’t you?
Scott: I like doing that yeah.
As this exceipt highlights, Julie had a tendency to try and speak on Scott’s behalf. Although I was able to convey meaning from what he was disclosing, she was often quick to assume what he was saying was ‘empty’ in meaning. This was something which recurred across the interview, with Julie quite often interrupting Scott or speaking for him. This was a challenge to navigate in the context of the interview and I used a number of strategies in order to ensure Scott’s voice, as well as Julie’s, was heard within the interview. The techniques that I used were an amalgamation of recommendations presented within the literature (e.g. Wilkinson, 2002; Murphy et al., 2015) and enabled a platform for both the person living with dementia and their family carer to have voice within the research interviews. I directed questions towards Scott and enabled him the space to elaborate on what he had been saying. Scott quite often mumbled his answers, but I took detailed notes in order to contextualise what he had said when reflecting on the audio at the point of transcription. This is something which is quite often observed within the wider dementia studies literature, with it being challenging at times to access the personal thoughts and feelings of the person living with dementia.
On reviewing the audio of the interview during the transcription process, it became evident that Scott’s voice was a little muffled. This, combined with Julie’s eagerness to share her own thoughts, meant that parts of Scott’s speech were, at times, inaudible. I reflected on this with one of my supervisors, who suggested that it might be helpful to have a conversation with Julie to enable her to understand the importance of hearing Scott’s ‘voice’ within the interview, as well as using an additional radio-microphone for Scott in order for him to be heard more clearly in the subsequent interview. The second interview, therefore, gave Scott more of an opportunity to express himself verbally through adapting the situation in order to facilitate his increased involvement. These interviews also highlighted the importance of valuing and documenting embodied reactions to the video, as although Scott did not always elaborate on his comments, he portrayed a ‘re-living of the musical moment’ through his swaying, laughter and comedic retelling of stories.
Mary
Before recruitment into the study, Mary was assessed to have the capacity to consent to take part in the research. I sat with her before one of the Music in Mind sessions and went through the information booklet with her, and she then signed the accessible consent form. Mary always became more formal when I talked to her about the research. It was as if she saw me as an authority figure when I had my ‘researcher hat’ on but was a lot friendlier and open with me when we were able to make music together. Although we had developed a friendship through the music-making, when I visited her in her home for the first time, she took time to warm-up to the video-elicitation interview method.
On arriving at Maiy’s home, she was not in and her husband told me she had been expecting me a little later in the afternoon. He telephoned Maiy and she said she would be five minutes. On arriving home, Maiy presented a large carrier bag to me that was filled with oranges and bananas. She exclaimed, seeming out of breath, that she had been at her local shop buying me fruit as she was very' pleased that I had come to visit her at home. She made me a drink and we sat and ate the oranges together before the interview began. Maiy introduced me to her grandchildren and expressed how she had begun to sing with them every morning before they went to school. This created a flexible and friendly atmosphere in which to conduct the interview.
However, on turning on the Dictaphone and opening my laptop to share the videos of the session with Mary, she became a lot quieter and more formal. It was as if the remembrance that a researcher, rather than a friend, was in her home had made her feel the need to act more formally than she had before. I reminded Maiy of the format of the video-elicitation interview and asked her to tell me to stop the video if she had anything to say. Mary would watch the video clips in fiill and when they had ended would say, for example, ‘Yeah that was nice too, mmm. Good’. However, when I asked her more open questions, she seemed much more at ease as the exceipt below indicates:
Robyn: Did you enjoy being able to teach it to other people in the group?
Mary: Yes.
Robyn: You’re a very good teacher.
Mary: I was when I was ... I used to be. I used to go out to teach community women. I teach them a lot. I work with them, Unicef, British Council, mobilising them to do something useful for themselves. So I’ve got that skill of accepting everybody and coming down to everybody’s level. Takes them short thing, not long thing that they can take something from. But this [Mtisic in Mind] group are teachable ’cos everybody’s looking forward to being happy at the end of the day. So you have to participate to teach people. You don’t give them instruction, participate. So all of them are willing to participate so it was a good thing. They learn it quick, maybe some of them are Christian and most are not... but they still join!
This passage of conversation enabled me to learn more about Mary’s life story and how this embodied itself within the context of the Music in Mind sessions. Mary saw herself as a teacher and as a Cluistian, and these two integral elements of her self-identity were projected through how she interacted with the other group members. The flexibility I adopted when in the field was integral to enabling Maiy the space to open up about her experiences of the Music in Mind programme. During the second interview, we did not reflect on the video of the sessions, but, instead, Maiy was able to lead the research interview through discussing what she believed were the most important elements of her experience. This unstructured interview approach was similar to the video-elicitation method, with a few prompts from myself in order to clarify her statements or learn more about what she disclosed.
Overall, these two examples highlight the need for flexibility when using a participatory case study approach with people living with dementia. By adapting my approach to facilitating participation through visual methods, I was able to learn more about the subjective experiences of each group member who was living with dementia. This enabled me to centralise their experience within the presentation of case studies and cross-case analysis of the data.
The importance of reflexivity
My own reflexivity was a vital part of the research process, enabling me to examine how my own life experiences and biases may have impacted on the data collection, analysis and write-up of the research (Rrefting, 1991; Tracy, 2010). Reflexivity was deemed as particularly important within this research context as I was a participant-observer taking part in the Music in Mind session as well as making observations about the impacts of the programme on the group members with dementia. I used reflexivity as a means of understanding my role in the collection of the data, as well as in acknowledging how my own biases, beliefs and personal experiences may have influenced my interactions with participants, the knowledge generated and the interpretation of the data (Berger, 2015). This was particularly important as I was selecting the video which was shown to participants within the context of the video-elicitation interviews, as well as analysing the data to form a new framework for understanding ‘in the moment’ musical experiences.
Before entering the field, I engaged in a reflexive practice exercise recommended by Simons (2009) in which I thought about how my own personal background and life experience may influence the collection and analysis of the data. I thought about the factors relating to myself and how this might influence the research process and my interaction with the group participants. One particular factor that I reflected on extensively was how my own musical training, and experience, influenced the data collection and analysis processes. Although I had anticipated that my own ‘musical ear’ would influence my interpretation of the data, it was clear that I was only able to pick up on specific musical skills held by people living with dementia because I had an understanding of musical theory and practice. For example, I was able to hear and understand the role of musical phrasing in conveying emotion and meaning through music because I had awareness of how I had used musical phrasing in my own past musical performances. Thus, my own musical background and training may have allowed me to centralise the musical processes and creativity observed within sessions, rather than focusing on outcomes relating to the more traditional measurements of BPSDs which are often used within this area. This, combined with a multidisciplinary supervision team made of both academic supervisors and industry supervisors (with their own musical training and experience), resulted in findings that were grounded in both psychology and music. I, therefore, had to be aware of how I presented the findings to allow them to be shared in a language that highlighted the musical nuances within the data without alienating those who do not have a musical vocabulary. Thus, where possible, the language I used was guided by the vocabulary used by people living with dementia in order to ensure that then experiences were not overlooked in favour of more technical language.
Insights gained
A participatory' case study approach in the context of this group setting afforded a participant-centred approach to understanding the ‘in the moment’ benefits of music for people living with dementia. The methodology enabled the gathering of multiple perspectives in order to understand complex phenomena, whilst still affording flexibility and creativity within the application of each individual research method.
Affording flexibility
Flexibility was a key component within this study, allowing for enhanced involvement by people living with dementia though the use of visual methods. Robyn had to actively adapt the method when in the field to enable people living with dementia to have their voices heard in the reported research process. As has been discussed within the two case examples within this chapter, employing simple adaptations, based on suggestions in the literature and discussions during supervision meetings, within the interview setting (i.e. the use of a radio-microphone) enhanced the contributions that people living with dementia were able to make to the research.
Fundamental to this flexible approach was the multidisciplinary (and large) supervision team that was accessible to Robyn across the duration of the three years of the ESRC CASE PhD studentship (2015-2018). Having the support of both academic and industiy partners enabled Robyn to troubleshoot imexpected methodological questions that had arisen during her fieldwork, whilst being guided by supervisors who had experience in navigating these matters within their own research or practice.
Acknowledging and valuing creativity
At the heaxt of this research was the creativity of people living with dementia. This is something that has been neglected within the music and dementia literature to date, with the experiences of people living with dementia reduced to the measurement of symptoms before and after a music ‘intervention’. A participatory case study approach undertaken with an identified group over a time-limited period, and which focused on the group’s (and individuals’) ‘in the moment’ experiences, allowed for a shift away from previous research in this area and was guided by what people living with dementia deemed as important to them within the context of a music-making programme. For example, group members described how music made them feel cormected to others in the group and how they enjoyed the wide array of instruments that they could choose from. These elements of experience were brought to the forefront through the use of the participatory case study methodology and creative visual research methods, as well as Robyn’s own musical training and the multidisciplinary namre of the research. The video-elicitation interviews not only allowed both the space to ‘re-live’ the moment outside of the context of Music in Mind, but also enabled people living with dementia to analyse their own experiences, which added an additional layer to the analysis of the overall data set (Kristensen, 2018).
Discussion and conclusions
Overall, this chapter has presented the strengths of using video methods in the context of a group participatory case study. The use of video was particularly valuable within the context of this research as it enabled a ‘re-living of the moment’ with people living with dementia, which enabled their voices to be centralised within the research findings. This is particularly important within this research area which has, to date, relied on understanding the benefits of music from the perspectives of family carers, paid carers and clinicians/researchers. By extending the focus of our understanding of the benefits of music for people living with dementia to include embodied and sensory experiences, it is possible to build a more holistic picture of why music is so beneficial for people living with dementia. This also provides Manchester Camerata with the justification to continue actively involving the voices of people living with dementia in any future research conducted by the organisation. The examination of these embodied and sensory' experiences in the context of participatory case study design has afforded a critical examination of the ‘in the moment’ musical experiences which celebrates the creativity and individual musical journeys of each person living with dementia.
It is important to note that although the use of video methods were valuable tools in recording and re-living ‘in the moment’ experiences, the researcher had an active role throughout the research which facilitated and enhanced the active engagement of people living with dementia. This required flexibility within the field, relinquishing necessary control in order for people living with dementia to be empowered through the research process rather than feeling ‘researched’. The role of the researcher within the Music in Mind group as both observer and participant strengthened the sense of equality between group members and the researcher as they were able to make music together in a setting that afforded creative parity. In the context of participatory case study work more generally, it is important to engage reflexively with the method itself to examine opportunities for enhanced participation across the research process, analysis and dissemination to ensure participation moves beyond mere ‘tokenism’. Engaging with participatory case study work as a method, therefore, requires appropriate training and experience, as well as the necessary support and supervision from those experienced in the method.
Key learning points from the method used
- • The use of video within participatory' case studies provides opportunities for the exploration of embodied and sensory experiences which can be interpreted with people living with dementia in the context of video-elicitation interviews.
- • Flexibility within the field is necessary to enable people living with dementia to feel empowered through the research process.
- • Appropriate training and support are necessary within participatory case study designs due to the complex decision making necessary' to navigate ethics (specifically visual ethics) in the field.
Three key references
Campbell, S. and Ward, R. (2017). Videography in care-based hairdressing in dementia care: Practices and processes. In Keady, J., Hyden. L.-C., Johnson, A. and Swarbrick, C. (eds.), Social research methods in dementia studies: Inclusion and innovation, (pp. 96-117). Oxford: Routledge.
Cook, A. (2003). Using video to include the experiences of people with dementia in research. Research, Policy and Planning, 21: 23-33.
Dowlen, R. (2019). The ‘In the Moment’ musical experiences of people with dementia: A multiple-case study approach. PhD Thesis. University of Manchester, Manchester.
A recommended future reading list
Capstick, A. and Ludwin, K. (2015). Place memory and dementia: Findings from participatory film-making in long-term social care. Health <£ Place, 34: 157-163.
Henry, S. and Fetters, M. (2012). Video elicitation interviews: A qualitative research method for investigating physician-patient interactions. Annals of Family Medicine, 10(2): 118-125.
Wilkinson, H. (2002). The perspectives of people with dementia: Research methods and motivations. London: Jessica Kingsley Publishers.
References
Asan, O. and Mantague, E. (2014). Using video-based observation research methods in primary care health encounters to evaluate complex interactions. Informatics in Primaiy Care, 21(4): 161-170.
Berger, R. (2015). Now I see it, now I don't: Researcher's position and reflexivity in qualitative research. Qualitative Research, 15(2): 219-234.
Braun, Y. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2): 77-101.
Campbell, S. and Ward, R. (2018). Videography in care-based hairdressing in dementia care: Practices and processes. In Keady, J., Hyden. L-C., Johnson, A. and Swarbrick C. (eds.), Social research methods in dementia studies: Inclusion and innovation, (pp. 96-117). Oxford: Routledge.
Capstick, A. and Ludwin, K. (2015). Place memory and dementia: Findings from participatory film-making in long-term social care. Health <£ Place, 34: 157-163.
Capstick, A., Ludwin, K., Chatwin, J. and Walters, E.R. (2016). Participatory video and well-being in long-term care. Journal of Dementia Care, 24(1): 26-29.
Cook, A. (2002). Using video observation to include the experiences of people with dementia in research. In Wilkinson, H. (ed.), The perspectives of people with dementia: Research methods and motivations. London: Jessica Kingsley Publishers.
Cook, A. (2003). Using video to include the experiences of people with dementia in research. Research, Policy and Planning, 21: 23-33.
de Medeiros, K., & Basting, A. (2014). ‘Shall I compare thee to a dose of donepezil?’: Cultural arts interventions in dementia care research. The Gerontologist, 54(3): 344-353.
DeNora, T. and Ansdell, G. (2014). What can’t music do?. Psychology of Well-Being, 4(1): 23.
Department of Health (2005). Mental capacity act. London: HMSO.
Dewing, J. (2008). Process consent and research with older persons living with dementia. Research Ethics Review, 4(2): 59-64.
Dowlen, R. (2019). The 'In the moment’ musical experiences of people with Dementia: A multiple-case study approach. PhD Thesis. University of Manchester, Manchester.
Dowlen, R., Keady, J., Milligan, C., Swarbrick, C., Ponsillo, N., Geddes, L. and Riley, B. (2018). The personal benefits of musicking for people living with dementia: A thematic synthesis of the qualitative literature. Arts & Health, 10(3): 197-212.
Elliott, M. and Gardner, P. (2018). The role of music in the lives of older adults with dementia ageing in place: A scoping review. Dementia: The International Journal of Social Research and Practice, 17(2): 199-213.
Habron, J. (2013). A conversation without words—reflections on music therapy and dementia. Dementia: The International Journal of Social Research and Practice, 12(1): 3-6.
Henry, S. and Fetters, M. (2012). Video elicitation interviews: A qualitative research method for investigating physician-patient interactions. Annals of Family Medicine, 10(2): 118-125.
ICaley, A., Hatton, C. and Milligan, C. (2019). More than words: The use of video in ethnographic research with people with intellectual disabilities. Qualitative Health Research, 29(7): 931-943.
Kindell, J. and Wilkinson, R. (2017). Video data and biographical music as a method to record and explore interaction in semantic dementia. In Ready, J., Hyden, L-C, Johnson, A. and Swarbrick, C. (eds.), Social research methods in dementia studies: Inclusion and innovation (pp. 77-95). Oxford: Routledge.
Kontos, P. (2004). Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing & Society, 24(6): 829-849.
IContos, P. (2005). Embodied selfhood in Alzheimer's disease: Rethinking person-centered care. Dementia: The International Journal of Social Research and Practice, 4(4): 553-570.
Rrefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American Journal of Occupational Therapy, 45(3): 214-222.
ICristensen, L.IC. (2018). ‘Peeling an onion’: Layering as a methodology to promote embodied perspectives in video analysis. Video Journal of Education and Pedagogy, 3,
3. https://doi.Org/10.l 186/S40990-018-0015-1
Morris, M., dayman, M„ Peters, K., Leppim, A. and LeBlanc, A. (2015). Patient-centered communication strategies for patients with aphasia: Discrepancies between what patients want and what physicians do. Disability and Health Journal, 8(2): 208-215.
Murphy, K., Jordan, F., Hunter, A., Cooney, A. and Casey, D. (2015). Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia: The International Journal of Social Research and Practice, 14(6): 800-824.
Pink, S. (2013). Doing visual ethnography. London: Sage.
Pink, S. (2015). Doing sensoiy ethnography. London: Sage.
Simons, H. (2009). Case study research in practice. London: Sage.
Tracy, S.J. (2010). Qualitative quality: Eight ‘big-tent’ criteria for excellent qualitative research. Qualitative Inquiiy, 16(10): 837-851.
van der Steen, J.T., Smaling, H.J., van der Wouden, J.C., Bruinsma, M.S., Scholten, R.J. and Vink, A.C. (2018). Music-based therapeutic interventions for people with dementia. Cochrane Database of Systematic Reviews, 7.
Wiles, R., Coffey, A., Robinson, J. and Heath, S. (2012). Anonymisation and visual images: Issues of respect, ‘voice’ and protection. International Journal of Social Research Methodology’, 15(1): 41-53.
Wilkinson, H. (2002). The perspectives of people with dementia: Research methods and motivations. London: Jessica Kingsley Publishers.
