The meaning and impact on well-being of bespoke dancing sessions for those living with Parkinson’s

ABSTRACT

Purpose

This paper presents qualitative research findings from the evaluation of a Parkinson’s Dance well-being venture in the UK.

Methods

Qualitative data was gathered to see how bespoke dancing sessions helped people with Parkinson’s (PwP) to manage their conditions and improve their lives and prospects. Principles of a participatory approach were incorporated and methods included semi-structured interviewing, researchers participant observation and an elicitation-based activity. Nineteen PwP, six carers, four dance artists and seven helpers participated in the study.

Results

Participating in Parkinson’s Dance sessions meant that PwP could experience the possibilities to dance, develop a “can do” attitude, experience fun, enjoyment, social connection, exercise, movement to music, improvement and/or maintenance of their balance, suppleness, coordination and confidence with movement, symptoms being pushed back and ability to learn new things.

Conclusions

Our findings add to the evidence-base about the benefits of dance for people experiencing Parkinson’s and through novel application of the Life-world based well-being framework of K. T. Galvin and Todres (2011) we propose a theoretical basis for Parkinson’s Dance as a resource for well-being. There is scope to consider application of the well-being framework to other arts activities and as the basis of an arts and well-being evaluation tool.

KEYWORDS:

• Parkinson's dance
• participant observation
• lifeworld
• wellbeing
• qualitative research

Introduction

In this paper we present qualitative research findings from the evaluation of a Parkinson’s Dance project, and we add to the evidence-base about the benefits of dance for people experiencing Parkinson’s. Furthermore, we propose new theoretical insights into Parkinson’s Dancing as a resource for well-being. By applying the Lifeworld-based, Kinds of Well-being Framework of K. T. Galvin and Todres (2011) to the context of dance we offer insights into how Parkinson’s dance activities translate into experiences of well-being.

The notion of well-being and the diversity of scholarship related to it is complex (Robeyns, 2017) and our choice of theoretical framework for the purposes of this paper is K. T. Galvin and Todres (2011) conceptual framework about kinds of well-being. Historically Galvin, Todres and Dahlberg established a need for an existential theory of well-being to guide health care (Todres et al., 2007) and subsequently K. T. Galvin and Todres (2011) developed their “Kinds of well-being” framework to inform Caring Science and health care provision. In this paper we apply that framework in a novel way to the context of dance.

Galvin and Todres’ “kinds of well-being framework” was based on The Lifeworld perspective as conceived by Husserl (K. T. Galvin & Todres, 2011). Detailed explanation of the derivation of Lifeworld theory is beyond the scope of this paper (more can be found in K. Dahlberg et al. (2008)) but in the words of Todres et al. (2007, p. 55) the Lifeworld “is understood as an experienced world of meaning”. The Lifeworld is characterized by its emphasis on a holistic view of what it means to be alive and its recognition of the subjectivity and interrelatedness of experience in our worlds. These characteristics of subjectivity, interrelatedness, and the experience of being human resonate with dance scholarship and practice. For example, the academic, dancer and poet Celeste Snowber (2012) has offered critique of the type of knowledge that is dominated by thinking about our outer bodies rather than what she calls “The Lived Body” or the body that we feel (Snowber 2012). As Snowber (2012, p. 55) has explained “We do not have bodies; we are bodies” and in a Lifeworld approach this is “embodied knowing” (K. Dahlberg et al., 2008). Furthermore, dance researchers have advocated that the effects of dancing should be studied relative to the dancer as a whole person rather than as a fragmented entity (Houston, 2011; Hulbert et al., 2020). From a Lifeworld perspective seeing the whole person, living in and feeling their body draws on “embodiment” theory (K. Dahlberg et al., 2008).

Hence the rationale for applying the well-being framework in this context is that it resonates with the world of dance (being rooted in The Lifeworld) and has the scope to capture the multifaceted nature of human well-being potentially experienced by dancers because Lifeworld theory is based on knowledge about human experience rather than disciplinary knowledge (K. T. Galvin, 2021). Disciplinary knowledge can confine conceptions of well-being to being of social, physical, or psychological sorts but the kinds of well-being framework is not limited by disciplinary thinking and so it can potentially capture and elucidate more facets of human well-being (K. T. Galvin & Todres, 2011). Furthermore, the kinds of well-being framework includes the possibility for people to experience well-being despite illness (K. T. Galvin & Todres, 2011) and so it is directly relevant to a context where dancers have lived experience of Parkinson’s.

Worldwide, approximately 6 million people have been diagnosed with Parkinson’s Disease (Andrejack et al., 2020). Parkinson’s is described as a chronic neurodegenerative disorder (Belvisi et al., 2020) which is incurable and progressive in nature (Andrejack et al., 2020). It is a complex condition that manifests in different ways (Mou et al., 2020) with variations in age of onset, progression, response to treatment and symptoms experienced (Andrejack et al., 2020).

Parkinson’s is characterized by motor and non-motor symptoms (Belvisi et al., 2020). Non-motor symptoms include anxiety and depression (Cerri et al., 2019), sleep disturbance, gastrointestinal problems, reduced sense of smell, incontinence (Mou et al., 2020) and voice dysfunction (Ma et al., 2020). Motor symptoms include tremor, rigidity (or stiffness) and bradykinesia (or slow movement) (Belvisi et al., 2020).

In 2017 a UK charity specializing in The Arts, set up a Parkinson’s Dance well-being venture to help those experiencing Parkinson’s to manage their conditions and improve their lives and prospects. Parkinson’s Dancing sessions were designed to offer People with Parkinson’s (PwP) and their carers regular movement sessions to support the PwP in improving their balance, coordination, suppleness and confidence. The sessions were also designed to offer attendees the opportunity to socialize, creating a support framework.

The dance project took place in a rural community in the South of England, it was funded by the National Lottery Reaching Communities Fund in the UK and the Arts charity commissioned our evaluation. We were required to evaluate elements of the project determined by the commissioning bodies and in the process, we gathered qualitative data to gain detailed insights into participants’ experiences of the Parkinson’s Dance sessions, this paper presents these qualitative findings.

The Parkinson’s dance activity and the setting

Weekly Parkinson’s Dance sessions were organized by the Arts charity throughout the year except for holiday periods. The sessions were cost-free for those with Parkinson’s and their carers (from now on referred to as “dancers” and their “dance partners” respectively). The gatherings took place in a community hall environment with kitchen facilities, they were 90 minutes long and comprised 75 minutes of dancing activity followed by 15 minutes of socializing with refreshments provided in a café-type area of the hall.

The Parkinson’s Dance sessions were based on the evidence-informed Parkinson’s Dance Science (PDS) approach which brings together physiotherapeutic intervention and the experience of creative dance (Hulbert, 2021). The approach (devised by Dr Sophia Hulbert (Neurophysiotherapist) and Aimee Hobbs (Dance Artist) with support from Pavilion Dance South West) provides “a fun, stimulating and supportive environment through which people with Parkinson’s can explore and develop movement and expression. Emphasis is placed on the joy of movement in the moment, but also aspires to rehabilitate and develop better functional outcomes for the dancers in their everyday lives” (Hulbert, 2021, p. 3). Furthermore, The Parkinson’s Dance Science approach to teaching dance to PwP “aims to provide a “Personal, social, artistic, and creative dance experience with a theoretical, evidenced and therapeutic underpinning” (Hulbert et al., 2020, p. 2). The Parkinson’s dance sessions focused on posture, strength, coordination, balance, creativity, suppleness and voice work and they were facilitated by dance artists who had been especially trained using the PDS approach.

A typical dance session would begin in a calming way to enable participants to settle. Everyone would be seated in a circle and welcomed. Initial activities enabled people to introduce themselves in ways which were fun, for example they could shout out their name whilst making a movement. All were involved in a warm-up activity whilst seated and the dance artists would guide group members’ movement through imaginary scenarios such as swimming with dolphins. Next, the pace would increase, with dancers standing if they wished or being offered alternative movements from their seated position. Irrespective, everyone (seated or otherwise) was involved in activities such as marching, with people greeting each other and connecting physically through “high fives” or as dance partners. Subsequent activities revolved around the development of a dance routine learned over several weeks and following a short break, all group members could choose to stand or sit for gentle ballet barre work (those standing would use the back of a chair as their barre). The ballet barre work incorporated graceful ballet positions and movements such as swaying. All activities were accompanied by music of different sorts and movements in the barre work could feel relaxing and gentle as the dancers became absorbed in the music and the movement. The closing stages of sessions served as a cool down and involved a creative, fun, ending with all group members in a circle either seated or standing. In turn, everyone would connect with the person next to them for example by passing on an imaginary present and in what felt like a communal farewell.

In addition to the 90-minute programme of activities, the dancers and their partners could arrive ahead of time to socialize and/or to settle themselves prior to the classes starting. All were greeted on arrival by volunteers and the dance teachers (from now on referred to in as dance supporters and dance artists respectively). Once the sessions started, group members would join in, to the extent they felt comfortable, either seated or standing and resting whenever they liked. The sessions were punctuated by breaks and drinks of water provided by the dance supporters who also joined in with the dancing themselves.

Materials and methods

Evaluation design

H. Dahlberg and Dahlberg (2019, p. 3) have highlighted that “To be a researcher … means to consciously dwell in the place of not knowing rather than knowing”.

In retrospect, our “not knowing” how a group of potentially vulnerable participants could be best included in the evaluation and “not knowing” about the nature of the dancing sessions meant that our approach to the evaluation began with a “method idea” explained by H. Dahlberg and Dahlberg (2019, p. 5): “ … an approach to the question of method where the researcher’s open and unbridled attitude is the most important feature. This ‘method idea’ is therefore actually more of a non-method than a method in the ordinary sense”. The “method idea” in this study led to an innovative, dynamic research process underpinned by consultation with the dancers themselves and recognition that dancing is an embodied endeavour.

From a methodological point of view, inclusion of a qualitative approach was in-keeping with evaluation of dance because reductionist approaches to evaluation have limitations as Carapellotti et al. (2020), p. 23 state:

Dance is a complex social experience involving music, learning, and opportunities for self-expression making it difficult to measure its value through quantitative methods alone.

Also, the need to focus on the whole person rather than their symptoms has been highlighted by Houston (2011): “It is not merely the body that experiences disability or dancing, but the person” (Houston, 2011, p. 343).

Use of a participatory approach

Our evaluation methods were informed by principles of a participatory approach. It was not fully participatory because the dancers did not determine the research aims, analyse data or write reports, however the principles applied (as identified by (Phillips et al., 2021)) were co-ownership, inclusivity, partners being fully engaged with academic researchers, equitable power relationships within the research process and shared decision making. The commissioning charity stipulated that our evaluation process should not impact participants’ enjoyment of the dancing sessions hence a key aspect was shared decision-making particularly in relation to data collection methods. In consultation with the dancers the researchers found that they disliked methods involving reading and writing, preferring discussion instead, hence discussion was incorporated through semi-structured interviewing and with people contributing to extents they wished.

Whilst designing the research a priority for the researchers was to understand the dancing activity to be evaluated. To achieve this, one of the three researchers undertaking the study joined the Parkinson’s dancing community as a participant observer, attending the weekly sessions between November 2017 and February 2020 (approximately 40 in all). The researcher was known to all as a participant observer and by being part of the group was able to gain embodied experience of the sessions and the dance for themselves. Marchant (2016, p. 2) has referred to this as

Studying movement by feeling it from the inside … .

In order to express felt, lived experience and understanding of the Parkinson’s dance activities, the researchers wrote a free form poem (Appendix 1) set it to imagery and music and then recorded the mix as a short video (less than three minutes in length). The video showed personal insights into the nature of the Parkinson’s Dance sessions and was shown to participants on a tablet computer to find out their opinions. Such feedback was gained by the researcher on a small group or one-to-one basis before sessions or after them at tea-time. On reflection this was an example of elicitation-based qualitative research whereby an artefact acts as a trigger for discussion (Barton, 2015). Such a process can aid inclusivity of participants (Barton, 2015) as was the case in this evaluation because all dancers and their partners involved in the evaluation were shown the video to ascertain their views. Although the research participants were not involved in the analysis of data, they all agreed that the video reflected their own experiences.

In terms of participatory research and the principles of co-ownership, partners being fully engaged with academic researchers and equitable power relationships, the commissioning charity was involved in agreeing to the nature of the evaluation process and the inclusion of a participatory approach. Furthermore, equitable power relationships in the research process were established through the researcher being an integral and accepted member of the group. Examples illustrating this included an occasion when a dance partner approached the researcher with evaluation information and another when a supporter perceived them to be a “sensitive researcher” (because plans for data collection were flexible depending on how individuals were on the day).

The process of recruitment

Following ethical approval (University ID number: (PD):17158) the charity’s dance project delivery team provided dancers and their partners with a letter (independent of the University evaluation team) explaining the role of the university evaluation and the researchers. (Three researchers were involved in this evaluation, one of these three researchers attended the sessions regularly the other two attended to undertake interviews with participants and join in the session on one occasion to better understand the experience. All three researchers were involved in the study design, and data analysis and preparation of this article). The letter had the participant information for the study attached and by regularly being in the group the researcher present was able to follow up in person by introducing themselves, explaining the role, discussing the nature of the evaluation project with the dancers and their partners on an ongoing basis and helping with completion of participation agreement documentation as appropriate. Others invited to be participants in the study were the dance supporters (who attended the classes to support other participants, prepare refreshments and take part) and dance teachers and after gaining informed consent, data was collected from 19 dancers who attended regularly, six of their dance partners (not all dancers were accompanied and for some, partners were employed carers who attended sporadically), all seven supporters and all four dance artists.

Data collection

The purpose of the data collection was to gain the perspectives of the dancing community about how the sessions helped PwP to manage their conditions and improve their lives and prospects. In particular, the data collection explored what brought participants back to sessions, possible improvements in balance, coordination, and suppleness as well as possible development of confidence with movement and the opportunity sessions offered for socializing.

The researcher enabled, valued, and encouraged any “level” of contribution by participants because they had learned that symptoms of Parkinson’s and their effects on PwP can vary within a day, on a day-to-day basis and, in the longer term according to the stage and nature of the Parkinson’s condition they experience (Chahine et al., 2020; Parkinson’s, 2022). As explained above data was collected through semi-structured interviewing (see Appendix 2 for interview guide) and when participants were able, in agreement and it was practical, discussion was recorded, otherwise notes were taken at the time. When discussion was recorded the data was transcribed prior to analysis. The dance artists/facilitators and volunteers were also interviewed.

As a participant observer the researcher joined in with the sessions’ activities and through the participant observation, was able to ascertain appropriate times to talk to participants, to see the impact of the sessions on the group as well as experience the activities and group membership for themselves. It was possible for the researcher to write notes during sessions, but they also wrote fuller reflective field notes immediately after them. Furthermore, they kept a “to do” list to keep track of the future arrangements needed to talk with participants as their circumstances allowed. Although data was collected mainly by one researcher who attended the sessions regularly the two co-authors were also involved in interviewing after being introduced to the group and joining in with the dance session on one occasion. All three researchers were involved in the data analysis.

Data analysis

The thematic analytic approach of K. Dahlberg et al. (2008) was used to analyse the data.

The data set included qualitative data from semi-structured interviews which had been transcribed (if recorded) and anonymized, researchers participant observation notes and views about the video. Descriptive coding was used to identify patterns or themes in the data and to summarize the perspectives of the dancing community.

A key outcome of qualitative research is meaning (H. Dahlberg & Dahlberg, 2019) and descriptive coding (or summarizing the data (Linneberg & Korsgaard, 2019)) gives insights into possible meanings from the data (Clarke & Braun, 2018).

Initially the approach to the development of themes was deductive analysis (meaning that themes were researcher (or analyst)—driven (Braun and Clark 2006)) based on the charity’s aim for the research to find out how sessions helped PwP to manage their conditions and improve their lives and prospects. Deductive analysis was followed by inductive analysis (data or theme driven see Figure 1).

Figure 1. Parkinson`s dance as a resource for well-being.

Findings

The overall themes resonated with well-being theory and are now considered in relation to this (See Figures (2-4), below). As shown in the following figures the possibilities were grouped into three key, interrelated themes named “The experience of moving to music”, “The experience of freedom, learning and change of attitude” and “the experience of social connection and joy”.

Figure 2. The three main themes and their relationship – Enjoyment.

Figure 3. The three main themes and their relationship—the role of connection.

Figure 4. The three main themes and their relationship—the role of moving to music.

Findings showed that attending the dancing sessions meant that people living with Parkinson’s could experience the possibilities summarized in Figure 2 and their relationships to well-being.

Figure 3. shows the theme of connections and shows the findings and their relationships to well-being.

Figure 4. shows the theme of moving to the music and shows the findings and their relationships to well-being.

The findings are presented and discussed in more detail next, in the discussion section in relation to the `Kinds of Well-being´ framework of K. T. Galvin and Todres (2011).

Discussion and findings

The Parkinson’s Dancing evaluated in this study was set up as a well-being project to help those experiencing Parkinson’s to manage their conditions and to improve their lives and prospects. The findings from the study suggest that the bespoke dancing sessions improved dancers’ well-being through the experiences and possibilities they created as discussed next.

A body of literature related to the positive effect of arts interventions for public health has been building internationally (Fancourt & Finn, 2019; Soukup et al., 2022) and in relation to Parkinson’s Dance specifically, the evidence that it “works” is there. For example, Soukup et al. (2022) have summarized how evaluations of dance activities for PwP to-date have shown benefits from social, emotional, artistic, quality of life, motivation, and symptomatic perspectives. Furthermore, within their work exploring the complete mind and body experience of dance for people experiencing Parkinson’s, Hulbert et al. (2020) have provided a synthesis of the current research literature showing that the evidence has consistently demonstrated the physical and quality-of-life benefits of dance for PwP. Our findings concur with the existing evidence base about the benefits of Dance for PwP and a question for this discussion section is what it is best for us to discuss in this context where evidence to support practice exists, our findings concur and as Soukup et al. (2022) have observed, the issue for public health practice is about the need for arts activities to be scaled up and for mainstream funding? Our thinking has been that a theoretical perspective offering insights into how Parkinson’s dance activities translate into experiences of well-being is needed, hence we propose a theoretical explanation of how our findings about the experiences of moving to music, of freedom, learning and change of attitude and social connection and joy relate to well-being. We propose that, by being rooted in the Lifeworld, the “kinds of well-being framework” has the scope to capture the multifaceted nature of human well-being as well as how our findings apply.

Todres and Galvin (2010) incorporated specific constituents (or experiential domains) from Lifeworld Theory into their well-being framework. These experiential domains (sometimes called emphases) include spatiality, temporality, inter-subjectivity, mood, identity, and embodiment (K. T. Galvin & Todres, 2011). Each of these experiential domains is explained relative to the kinds of well-being framework and our findings in due course but first we give detail of three other elements of the framework that K. T. Galvin and Todres (2011) identified as possibilities for well-being and relate these to our findings. The possibilities for well-being are named “existential mobility” “existential dwelling” and “existential dwelling-mobility” (K. T. Galvin and Todres (2011).

Existential mobility

The first possibility of existential mobility is related to a person feeling that they are moving forwards (figuratively and/or literally) feeling alive and involved in life in meaningful ways (Todres & Galvin, 2010). Findings from this study and the theme of “The experience of moving to music” indicate this type of well-being experience, for example Dancer 11 expressed how she and her partner had been enabled to dance again:

I feel I can (dance) now. In my mind we’d given up dancing but now I’ve come back into it. The company and music and everything is there. I go round the kitchen a bit now with the radio full on! (laughing) … I can’t praise it (the Parkinson’s Dance) enough!

The sessions appear to have supported dancers moving forwards quite literally as they were seen as “a chance to exercise” (Dancer 14) and as a way for PwP to “keep active” (Dance Partner 1). As Dancer 9’s partner (Dance Partner 5) offered, without the sessions Dancer 9 would be “staying at home and not moving”. The sessions were described as “quite a workout” (Dancer 7) and they were found to be tiring as Dancer 11 suggested shared after a session: “Ah! Tired!—You know you’ve done it!”

As Dancer 8 explained:

You do exercises you don’t normally do at home and it’s about what you can do to help yourself.

It emerged that for some, improvement with movement not only occurred within sessions but could extend for longer periods for example Dancer 10 found that now he could get up from a chair confidently and he could participate in the Parkinson’s dancing standing rather than seated.

The notion of existential mobility had been observable for example EN had noted on one occasion:

The theme was Indian music. There was a visible difference in peoples’ confidence with movement at the end, with all but those seated, on their toes with their hands in the air. People seemed steady in the ballet to the extent they were twirling around with their arms out horizontally, not holding on to the chairs.

Existential dwelling as a possibility for well-being is related to a person feeling that they are at peace with how things are presently, irrespective of whether everything is perfect (Todres & Galvin, 2010). Todres and Galvin applied Heidegger’s idea of “homecoming” in this part of their theory, proposing that we feel “at home” when we are feeling well and that we feel “homeless” when vulnerable or ill. Feelings of “homelessness” make us want to return home (metaphorically speaking) and so the experience of Dwelling well-being involves a journey or process whereby the person will have come to terms with their circumstances and feel “at home” regardless (Todres & Galvin, 2010). In our study there was evidence of such feeling at home, for example when Dancer 5 and Dance Partner 7 fed back that:

This group does more than bring people together, it gives us all a feeling of being alive, laughter and caring.

The theme of “The experience of moving to music” indicated a dwelling type of well-being experience as it offered dancers a safe environment to be in:

I’m impressed with the way they (the teachers) monitor and keep an eye on people - the less able - they (the teachers) are very good. (Dancer 4)

And as the researcher observed: “People were on tiptoe at the end (of the session)” suggesting that they felt safe and balanced.

Dwelling-mobility

Existential dwelling-mobility as a possibility for well-being is related to a person feeling a combination of the qualities of mobility and dwelling. Such “dwelling-mobility” refers to “a sense where there is both the freedom and openness of mobility (or being called into the novelty of open horizons) as well as the ‘coming back home to itself’ of dwelling” (Todres & Galvin, 2010, p. 5). Hence Dwelling mobility has an overarching, inclusive quality because it accounts for people having feelings of well-being in spite of limitations or ill health (Todres & Galvin, 2010).

The notion of dwelling-mobility was illustrated by Dancer 6 for example, when he told the researcher about how:

It (Parkinson’s) doesn’t need to constrain you. There are things I can’t do, and one accepts it, but I am much more open to the possibility of doing something.

Furthermore, for Dancer 6, a consequence of being in the group had been that he had become more socially confident and at ease meeting people in places other than the dance sessions suggesting that he felt at home in a context of new horizons.

Kinds of well-being framework and the findings

Table I is an adaptation of K. T. Galvin and Todres (2011) “Lattice” of Dwelling Mobility or kinds of well-being framework. The adaptation not only shows the well-being possibilities of Mobility, Dwelling and Dwelling Mobility just described but also the “experiential domains” (or “emphases”) of spatiality, temporality, inter-subjectivity, mood, identity and embodiment referred to earlier. The well-being possibilities and domains interact to produce 18 different qualities of well-being named in the lattice. It should be noted that not all of the 18 variations necessarily apply equally on all occasions as some are complex, rare or overlap (K. Galvin & Todres, 2013) but next, we give examples of our findings that relate to each of the 18 variations of well-being experience to illustrate what the Parkinson’s Dance sessions offered. We explain the well-being possibilities associated with each of the experiential domains of spatiality, temporality, inter-subjectivity, mood, identity and embodiment, beginning with the experiential domain of spatiality.

Table I. An Adaptation of the “Dwelling-mobility” Lattice of Galvin and Todres (2011, p.3).

	Possibilities for Well-being
	Mobility	Dwelling	Dwelling-mobility
Experiential Domains
Spatiality	Adventurous horizons	At homeness	Abiding expanse
Temporality	Future Orientation	Present-centredness	Renewal
Inter-subjectivity	Mysterious inter-personal attraction	Kinship and belonging	Mutual complementarity
Mood	Excitement or desire	Peacefulness	Mirror-like multi-dimensional fullness
Identity	I can	I am	Layered continuity
Embodiment	Vitality	Comfort	Grounded vibrancy

Spatiality

Spatiality refers to our experiences of the qualities of the environment around us and our interactions within it (Todres et al., 2007).

The spatial mobility well-being experience (“Adventurous horizons”)

The notion of “Adventurous horizons” is characterized by a person experiencing a sense of adventure as well as the potential to explore new places and things (K. T. Galvin & Todres, 2011). The sense of adventure can be achieved in real or imaginary ways (K. Galvin & Todres, 2013) and the findings from our study indicated that the dance sessions offered PwP an experience of adventurous horizons because of the sense of adventure they created through imaginary experiences and journeys.

To get 20 or so adults in the middle (of the room) being monkeys there’s got to be something in it! (Dancer)

The sense of adventure could also be through the experience of the dance as something to re-visit or as something new for PwP to explore and to learn, for example Dancer 1 told the researcher that a few years previously he would not have thought that dancing was something he would be doing but now he was a regular member of the group. Others too, found themselves with a sense of renewed adventure and more of a “can do” attitude, being open to doing things (other than dancing) irrespective of their diagnosis of Parkinson’s suggesting more engagement. Dancer 3 for example had been motivated to return to a sewing hobby which she had enjoyed in the past. The findings also suggested that the dance could enable PwP to experience physical, psychological and social freedoms that potentially enabled “Adventurous horizons”. As Dance Artist 2 explained to EN, the intentions of the Parkinson’s dancing sessions were to offer freedom both physically and mentally, to encourage creativity and to make people smile and laugh. She explained that the dance artists “create the weird and wonderful to facilitate and allow you not to be you … ”

It is noteworthy that alongside their existential theory of well-being, K. Galvin and Todres (2013) created another framework (based on the same possibilities for well-being and experiential domains) to elaborate the nature of a lack of well-being (or suffering). There, they name a lack of spatial mobility well-being as “Imprisoned” to reflect the experience of feeling trapped or contained. In relation to our findings, rather than feel hemmed in or imprisoned, PwP could be less inhibited through creativity and fun for example Dancer 8 found that sessions meant that he could “let himself go”. “Not that I’m any good (at the dancing)! I just enjoy it, yeah let yourself go a little bit.”

The spatial dwelling well-being experience (At homeness)

K. T. Galvin and Todres (2011) term the spatial dwelling-related well-being experience “At homeness” whereby a person feels welcome and at ease in their environment. By contrast K. Galvin and Todres (2013) term the suffering experience related to spatial dwelling as “Exiled”, characterized by feelings of being away from home and unwelcome. The findings from our study indicated that the dance sessions offered PwP a well-being experience of “At homeness” as they made it possible for them to feel at home and welcomed through the experience of social connection and joy for example:

“Enjoyment! letting yourself go a little bit, meeting other people.” (Dancer 8).

There was a sense of social connection and joy within an inclusive and non-judgemental environment with familiar people. As Dancer 2 had commented: “It’s nice to be in a group with people having a nice time”.

The spatial dwelling-mobility well-being experience (Abiding expanse)

In the Dwelling mobility lattice K. T. Galvin and Todres (2011) term the spatial dwelling-mobility related well-being experience “Abiding expanse” reflecting

a well-being experience of feeling at home whilst feeling the possibility for adventure at the same time. By contrast K. Galvin and Todres (2013) call the suffering experience related to spatial dwelling-mobility “Roomless” as characterized by feelings of entrapment in an unwelcoming place and having nowhere else to go. The findings from our study indicated that the dance sessions offered PwP a well-being experience of Abiding expanse because they were in a familiar place, accepted by others and they had the chance of adventure literally or figuratively. Rather than feeling “Roomless” and trapped with nowhere to go, the sessions offered PwP something welcoming to look forward to. As Dancer 7 said: “it’s something to get you out”.

Not only did people have the chance to create friendships, their “at homeness” with each other could extend beyond the weekly group:

“ … quite a few … they travel together and I know they see each other outside of class as well which is nice so they’ve got that connection there. (Dance Artist 3)

Temporality

Temporality is about time, which can be experienced in different ways, for example as clock time or as the timing of the seasons (K. Galvin & Todres, 2013). Temporality is about the experience of time in relation to our personal stories, our present, pasts and futures.

The temporal mobility well-being experience future orientation)

In the Dwelling mobility lattice K. T. Galvin and Todres (2011) term the temporal mobility related well-being experience “Future orientation” whereby there is a well-being experience of going forwards (Todres & Galvin, 2010) with welcoming future possibilities (K. T. Galvin & Todres, 2011). There is a sense of purpose and “One can imagine possibilities for achieving change … ‘anything that can provide a sense of new things happening and that constitute “a breath of fresh air”” K. Galvin and Todres (2013, p. 83).

The category of findings “experience of freedom, learning and change of attitude” relates to this type of well-being experience for example the sessions helped people to see that they could achieve change as Dancer 6 illustrated:

in a way part of the confidence came from dance - that I can do that - it actually allowed you to think about the possibilities of doing that.

Dance Partner 2 (to the researcher): … before that he wouldn’t have entertained the idea but he did it and that was great … he said I’m going to do it … and other things like putting up shelves … and getting involved a bit more in the garden … (rather than “what’s the point I can’t do it”)—and I think it probably all stems from here—it’s great .”

By contrast K. Galvin and Todres (2013) name the suffering experience related to temporal mobility “Blocked future”, a sense of there being no future or purpose to life. The findings from our study indicated that the dance sessions gave PwP a well-being experience of Future orientation because they made it possible for them to have something to look forward to and to structure their lives. For example Dancer 12 identified that the scheduled sessions helped him to “keep busy” and highlighted things that they could do for themselves. The dance helped PwP to maintain and/or improve their movement going forwards and to develop a “can do” attitude. As one of the dance artists (Dance Artist 1) had observed:

The change you see most is attitudes. It is not always about the physical ability.

The possibilities that the dancing led to for PwP did not appear to be limited to dancing for example Dancer 10’s Parkinson’s had made him feel “useless” at first and whilst sessions reminded him that his dancing abilities were not what they used to be, the sessions had helped him to recognize the things that he could do and with daily activities like driving.

The temporal dwelling well-being experience (Present-centredness)

In the Dwelling mobility lattice “Present-centredness” refers to a well-being experience of being in the now and deeply absorbed in the moment (K. T. Galvin & Todres, 2011). By contrast K. Galvin and Todres (2013) term the suffering experience related to temporal dwelling “Elusive present” and this is characterized by the experience of feeling unsettled and unable to focus. The findings from our study indicated that the dance sessions gave PwP a well-being experience of Present-Centredness because they captivated PwP in the present as the creative activities were absorbing. The music and its rhythm for example appeared to facilitate people being absorbed and being in the now:

Um I think it (the music) makes you step out more. Um I mean, I know that at home sometimes I shuffle … but once you’ve got music and you’ve got to walk, step out to it you don’t do this (demonstrates shuffling) … you take longer strides and things … if it’s got a really good rhythm to it y’know. (Dancer 13)

Present-centredness also resonates with the findings from this study related to the “experience of social connection and joy” theme since connection and togetherness could be felt within the group when they were singing together during voice work as the following excerpt from the researcher notes illustrated:

“We sang a song about a ship … it was very good, and everyone was in harmony. Afterwards, during movements people started to spontaneously hum the song together and it felt like a beautiful, very special moment of togetherness. It made the hairs on the back of my neck stand up. Apparently in the kitchen outside we sounded like a choir. When I commented about it at teatime a dancer said it had been ‘hymn-like’”. An in the moment feeling of intense well-being.

The temporal dwelling-mobility well-being experience (Renewal)

The well-being experience of “Renewal” is when a person feels settled in the present but at the same time, they have a sense of future possibilities (K. T. Galvin & Todres, 2011). By contrast the suffering experience related to temporal dwelling-mobility (“No respite”) is characterized by feelings of having no future and no way out (K. Galvin & Todres, 2013). The findings from our study indicated that the dance sessions offered PwP a well-being experience of Renewal not only by offering something engrossing in the “now” but also facilitating future opportunities. The findings from the “experience of freedom, learning and change of attitude” theme illustrate renewal given that PwP could develop “can do” attitudes and learned how to improve or maintain their movement. For example, the Dance Artists taught how particular movements could help dancers with their daily activities:

They (the Dance Artists), they give you the reason for doing it (the movement) … quite often telling you how, walking backwards, toe—heel, the reason for doing things in a certain way … and um and I can try and use that in other areas. (Dancer 13)

and at other times it helps me with certain other movements like going upstairs. If I think about what, how we walk here, lifting our knees up, it’s much easier. (Dancer 13)

In another example, Dancer 3 felt that their balance had improved meaning that they could pick up their stick if they had dropped it and they could get into and out of a car more easily.

Inter-subjectivity

Inter-subjectivity is about how we live in the social world with its shared meanings and different cultures (Todres et al., 2007).

The Inter-subjectivity mobility well-being experience (Mysterious inter-personal attraction)

In the Dwelling-Mobility lattice K. T. Galvin and Todres (2011) term Inter-subjectivity mobility “Mysterious inter-personal attraction” whereby a person is curious about another’s unseen depths. The well-being experience related to Mysterious inter-personal attraction involves a sense of attraction and invitation into the mystery of others and their worlds like a gravitational pull (K. T. Galvin & Todres, 2011). By contrast K. Galvin and Todres (2013) name the suffering experience related to Inter-subjective mobility “Aversion” because this is characterized by inter-personal life being unattractive, leading a person to want to move away from others and/or feeling that they are invisible. K. Galvin and Todres (2013) explain Aversion as happening when a person loses their “interpersonal spark” for example if they lose their social connections when illness forces them to give up an activity like dance.

The findings from our study indicated that the dance was accessible to all irrespective of ability and that, in itself, facilitated the opportunity for PwP to have a well-being experience of mysterious inter-personal attraction. Furthermore, sessions apparently ignited mysterious inter-personal attraction through the element of surprise and mystery that dancers could bring to the group. People could be spontaneous in their movement and they could surprise each other with their achievements in the moment, such as a person who unexpectedly stood for the first time. Group members appeared to bond irrespective of how well they knew each other, and the dance fostered curiosity and mysterious inter-personal attraction as it brought out individuals’ creative and previously unseen selves. It seems that the dance artists contributed to this through the use of “props” and bringing people out of themselves for example by enticing members to imagine themselves in the glamour of the dance world. At the end of sessions group members used unique and artistic ways to pass imaginary objects to each other. All of these factors appear to have contributed to their mysterious inter-personal attraction.

As Dancer 4 had commented:

I don’t know who people are—I don’t need to know to make enjoyment out of it—I don’t need to know a lot about people—it’s how we relate together.

The Inter-subjective dwelling well-being experience (Kinship and belonging)

The well-being experience of Kinship and belonging is about having a sense of belonging and togetherness (Todres & Galvin, 2010). It emphasizes “we” rather than “I” and as K. Galvin and Todres (2013) explain, this is about people being together in an effortless way such that they feel that they have shared history and are kindred spirits.

As Dance Partner 2 had noted:

Everybody’s pleased to see each other and the fact that you’ve got Parkinson’s Disease in different degrees doesn’t make any difference - it’s the person.

“it is such a lovely group.” (Dancer 9)

By contrast K. Galvin and Todres (2013) term the suffering experience related to Inter-subjective dwelling “Alienated isolation” and this is characterized by the experience of feeling uninvited, feeling an outsider and lacking a sense of belonging. The findings from our study indicated that the dance sessions facilitated kinship and belonging through the group being made up of “regulars” “it’s a group of regulars.” (Dancer 1).

Dance Artist 2 explained how socializing was integral to sessions and not confined to teatime. The social connection within the Parkinson’s Dance included group members having physical contact with each other and this was important because as Dance Artist 1 described, some attendees may live alone with limited human physical contact. Dance Artist 1 explained to the researcher how “dance is a social form of exercise” that enables people to physically share space and connect.

There was good humour in the sessions and people felt included and accepted for example Dancer 3 had found that her Parkinsonian symptoms had limited her ability to mix in other contexts but the Parkinson’s Dance had enabled her to socialize as part of an inclusive group.

Furthermore, the group appeared to interact effortlessly for example when they sang together spontaneously.

The Inter-subjective dwelling-mobility well-being experience (Mutual complementarity)

The well-being experience of “Mutual Complementarity” is characterized by a person feeling at home with others but being curious about them at the same time.

“ … a paradoxical quality of both familiarity and strangeness” (K. T. Galvin & Todres, 2011, p. 6). The mutual element can be about togetherness stemming from similarity in circumstance or place and the complementarity element about people being different but benefitting from being together. Individuals are more when they are together than when apart (K. T. Galvin & Todres, 2011, p. 6) meaning that the well-being experience comes from any way one finds “‘the attractive unknown’ in the ones that are close, and with whom we belong” (K. Galvin & Todres, 2013, p. 87). By contrast the suffering experience related to inter-subjective dwelling-mobility (“Persecution”) is characterized by intertwined feelings of not belonging, feeling threatened and being in harm’s way (K. Galvin & Todres, 2013). The findings from our study indicated that the dance sessions offered PwP a well-being experience of mutual complementarity (togetherness in conjunction with curiosity about others) through the creative and social opportunities they created. The context was the familiar homely dancing group made up of individuals with hidden depths who were more together than when they were apart.

Dance Artist 4 offered insight into how dance offers something special: “It’s, its, as much about the energy and the, the atmosphere, the space that’s created with everybody working together for doing the dance, making whatever happens in the class.

This notion was illustrated when the group members were in synchrony as they worked together to produce creative dance and song.

As the researcher had noted:

The rustling sounds of the pom poms had contributed to the feelings of rhythm and the pom poms waved by the group members had given a visual display of their synchronised movement

We were waving with scarves at the end and the coordination in the room was clear.

Feedback included that they were helped along by others too as the following findings from the “experience of social connection and joy” theme suggest:

… (At the gym) y’know there’s one of you on a treadmill, one of you is doing something else, whereas here, everyone’s doing the same thing together so it’s more, it’s more fun in a way, y’know, you’re sort of helped on by everybody else doing it. (Dancer 13)

As Dancer 8 said:

You like to be one of the crowd – (movement is) nice in a group rather than being individuals”. He felt that “It reflects on you” and when the researcher asked what he meant by that he said that it (movement) “rubs off on you.

In one instance discussion between the researcher and Dancers 1 and 7 indicated that the choreography of the dance and having pom-poms to wave in time to the music helped everyone move together as a coordinated group. As the researcher had also noted on one occasion: It was as though the group was as one.

Mood

Mood refers to how we feel about our circumstances and how we are, for example feeling worried or anxious, happy, or sad (K. Galvin & Todres, 2013).

The mood mobility well-being experience (Excitement or desire)

“Excitement or desire” reflects a well-being experience of feeling well, feeling uplifted, feeling excited about something, or feeling the possibility of life as worthwhile. Hence, the experience relates to anything that “motivates a felt connection to a person’s meaningful life desires” (K. Galvin & Todres, 2013, p. 88). By contrast K. Galvin and Todres (2013) term the suffering experience related to mood mobility “Depression” because it is characterized by the experience of feeling listless, gloomy, and encumbered. The findings from our study indicated that the dance sessions gave PwP a well-being experience of “Excitement or desire” as illustrated by findings in the “experience of social connection and joy” theme. Sessions were found to be uplifting, the music was inspiring, there was a sense of play, fun and celebration and sessions were events to look forward to.

As Dancer 8 explained to EN: Well it (the dancing) makes you feel good definitely and … all movement is good … .

The music also added to the enjoyment of the Parkinson’s Dance sessions overall as Dancer 11 expressed:

I love the music—it makes you feel happy, especially if you recognize it.

Supporter 2 saw the Dance Artists as particularly important to the success of the sessions along with the music that they chose:

… the tutor is key to this … and the music of course.

The Dance Artists were also seen as key in making sessions fun:

Dance Partner 1: All the instructors are very good.

Researcher: What sort of qualities d’you think that they show that help?

Dancer 13:

Enthusiasm, helpful.

Dance Partner 1:

Yeah and they make it fun.

Everyone has a sense of humour, and the teachers have a rapport with everyone, they bring out the best in people in every way.

(Dancer 11)

Enjoyment in general was seen as a key aspect of the Parkinson’s Dance and people other than those with Parkinson’s spoke of this, for example Supporter 3 explained the feeling she had experienced at the end of sessions to be one of:

JOY in capital letters! … like when it’s been raining, and the sun comes out and you think Ahhh—that sort of feeling.

“It’s like a party!” (Dance Partner 2).

People (dancers, teachers, friends, family and volunteers) had gone a long way to enter into the party spirit, they wore costumes, hats, Xmas jumpers, baubles. The feeling today was fun, and the costumes/hats/jumpers contributed to that.

(Researcher notes)

“It makes you feel happy” (Dancer 6).

The play and laughter created in sessions meant that they were fun, and the researcher experienced this dynamic herself, on one occasion noting that there had been

lots of fun and clapping and smiling” in the group. This is an example of what ‘social connection and joy “looked like” and as Dancer 10 had commented: “It’s a bit of a laugh. I enjoy making people laugh.

The mood dwelling well-being experience (Peacefulness)

The well-being experience of “Peacefulness” is about feeling settled and accepting of how things are (K. T. Galvin & Todres, 2011). By contrast K. Galvin and Todres (2013) term the suffering experience related to mood dwelling “Agitation” and this is characterized by feelings of something being wrong. The findings from our study indicated that the dance sessions gave PwP a well-being experience of peacefulness as they created a relaxing environment and a type of “peace-in-spite of everything” for example PwP could become more accepting of themselves and not care about what others thought of them as illustrated by findings within the “experience of freedom, learning and change of attitude” themes from this study.

Dancer 6 had also found that attending the sessions had helped him to feel freer and less inhibited when he was out in public:

I think it’s my ability to feel freer, less concerned, it’s reduced, if people you meet think, you’re a bit funny don’t worry about it.

And the experience of moving to music for example as Dancer 18 found:

The music loosens my mind and body.

The mood dwelling-mobility well-being experience (Mirror-like multidimensional fullness)

K. T. Galvin and Todres (2011) term the Mood dwelling-mobility well-being experience “Mirror-like multidimensional fullness” and they recognize that this is a complex notion. Mirror-like multidimensional fullness reflects feelings of being upbeat and in the thick of things going forwards but also feeling complete through being in the moment and letting things be (K. T. Galvin & Todres, 2011, p. 8). By contrast the suffering experience related to mood dwelling-mobility (Restless gloom) is characterized by concurrent feelings of depression and being unable to settle (K. Galvin & Todres, 2013). The findings from our study suggested that the dance sessions offered PwP a well-being experience of mirror-like multidimensional fullness by enabling people to feel positive in the moment despite their complex circumstances. Supporter 1 summed up the benefits of the group she had observed overall:

I think the, the dance movements are good because if you watch people come in very often they come in very sort of, they’re stiff and almost sometimes a little bit withdrawn and then you watch them laughing and enjoying and … then they, they obviously do as much movement as they can and I would say it’s very beneficial in all ways and the fact that they’re joining in a group.

Personal identity

Personal identity is about being able to ‘do’ and to ‘be’ (K. Galvin & Todres, 2013)

The personal identity mobility well-being experience (I can)

“I can” reflects a well-being experience of feeling able to do what one would like to in the future and having the personal resource or agency to do it (K. Galvin & Todres, 2013). By contrast K. Galvin and Todres (2013) name the suffering experience related to Personal Identity “I am unable” characterized by a sense of lack of agency, feeling useless and being doubtful of achieving any success now or in the future because something is lacking. The findings from our study indicated that the dance sessions offered PwP a well-being experience of “I can” for example they were inclusive of all irrespective of physical ability and they gave PwP the opportunity to revisit dance as a past activity or to explore it as something new. The sessions enabled PwP to do more than they thought through guided imagery activities:

Dance Artist 3 provided insight into how dancers were helped to achieve their potential:

… often people with Parkinson’s don’t know how far they can go—they don’t know where their extremities go, so they’ll just reach there and they think that’s as far as they can go but we try to encourage them to reach even further and if they see us really reaching out then that’ll then hopefully encourage them t’ reach just that little bit further and really dance (artist’s emphasis) reach their maximum that they can go to.

The sessions inspired them to do more outside of sessions, helped them to maintain and/or improve their movement and offered the means for people to help themselves.

The personal identity dwelling well-being experience (I am)

K. T. Galvin and Todres (2011) term personal identity dwelling “I am” which refers to a well-being experience of “‘being at one’ with the world” (Todres & Galvin, 2010, p. 6), being at peace with who one is, not in terms of identity as determined by role and personal history (K. T. Galvin & Todres, 2011) but more deeply, relative to Being in a cultural or anthropological sense (K. Galvin & Todres, 2013) in a finding—myself -sort—of way. K. Galvin and Todres (2013) term the suffering experience related to personal identity dwelling “I am an object or “thing”’ and this is characterized by the experience of feeling judged and perceived as something one is not. The findings from our study indicated that the dance sessions offered a well-being experience of “I am” because they created an opportunity for PwP to see that they were still themselves.

On another occasion Dance Partner 2 exclaimed to the researcher that “It (The Parkinson’s Dance) works!” She explained that recently during an appointment with a health practitioner the practitioner had asked Dancer 6 to demonstrate particular movements. Because Dancer 6 had been unable to do so the practitioner concluded that Dancer 6 was unable to do two things at once. However, during the Parkinson’s Dance that day, Dance Partner 2 had realized that Dancer 6 had been doing at least two things concurrently and that his movement had been coordinated. She reported that the same thing had happened at a subsequent appointment. This may indicate that in the appointment context Dancer 6’s movement had been inhibited by his thinking about it but in the Parkinson’s Dance, it had not.

The dance enabled people to let themselves go, not to care and to be their authentic selves. Others, such as Supporter 6 had had noted how: “ … people come out, away (supporter’s emphasis) from the illness and kind’ve go on to another level”

The personal identity dwelling-mobility related well-being experience (Layered continuity)

“Layered continuity” reflects a well-being experience involving both “I can” and “I am” (K. T. Galvin & Todres, 2011). The well-being experience of “Layered continuity” reflects that we have many layers of self and identity, historic and otherwise, that we are confident about who we are in this layered context and that we feel self-efficacious come-what-may. By contrast the suffering experience related to Personal Identity dwelling-mobility (“I am fragmented”) is characterized by feelings of having become an object and having no control or resource to change things (K. Galvin & Todres, 2013). K. Galvin and Todres (2013, p. 93) explain the notion of well-being related to layered continuity to be “any experience where one’s personal identity is felt to be already achieved in its essence, as well as a felt sense of self that is ‘able to’ in a general sense”.

The findings from our study indicated that the dance sessions offered PwP a well-being experience of layered continuity by facilitating a scenario of “this is me and this is what I can do” rather than one of “I am here as a PwP, a labelled object, trapped and not able to change things”.

The dance sessions were a resource that offered PwP the opportunity and freedom to Be as illustrated by the theme “the experience of freedom, learning and change of attitude”, to let go of any narrow definitions of self, to see that deep down they were still themselves and “able to”. It seems that the dance also offered the chance for people to reconnect with their layers of self and identity as illustrated by the couple who danced for fun spontaneously in a public building, the facilitated imaginary journeys within sessions and the significance the music had for people. For some, the fun continued outside of sessions, for example Dancer 6 and his partner (Dance Partner 2) told of a time they had been in the corridor of a public building and, finding themselves alone, had spontaneously danced in the space “for fun”.

Embodiment

Embodiment is about the experience of our bodies as lived and felt rather than our bodies being conceived as objects (K. Galvin & Todres, 2013).

The embodiment mobility well-being experience (Vitality)

In the Dwelling-Mobility lattice K. T. Galvin and Todres (2011) term the Embodiment mobility related well-being experience “Vitality” to reflect a well-being experience of embodied energy and bodily feelings of movement which can be literal in nature or metaphorical and facilitated through imagination (K. T. Galvin & Todres, 2011). Vitality reflects the notion of “bodying forth” or moving forwards in a taken-for-granted way (K. Galvin & Todres, 2013, p. 93). Hence, the notion of vitality reflects the feeling of being energized and wanting to move. K. Galvin and Todres (2013) name the suffering experience related to embodiment “Stasis and exhaustion” because it is characterized by a lack of movement and energy, a lack of motivation to move and preoccupation with feelings of restriction of an incapable body). The findings from our study indicated that the dance sessions offered PwP a well-being experience of Vitality because they enabled movement in a taken-for-granted way of which K. Galvin and Todres (2013) speak.

The notion of embodiment was captured by renowned 20^th century dancer, choreographer and teacher Martha Graham, when she wrote that:

Movement never lies. The body is a very strange business. The chakras awake the centres of energy in the body, as in Kundali yoga. The awakening starts in the feet and goes up. Through the torso, the neck, up, up, through the head, all the while releasing energy.

(Graham, 1991, p. 122)

Findings in the theme “the experience of moving to music”, imaginary journeys, creative activity and the exercise to music enabled and motivated PwP to move. Music played an important a role in helping people to move, as dance artist two explained to the researcher: “music kicks it (movement) to another level” and Dancer 8 explained the effect the music had on him:

I wanna go (move) … It gets me going

Sometimes PwP moved to extents they did not realize or expect for example a powerful account of the role of music played was given by Dancer 4 who perceived that on one occasion it had helped him to stand unexpectedly:

They played slow gentle music which I could follow, and I stood up and did it (wow!) and then almost every session I found … I could join in and that made me start and it’s gone on from there … it’s somewhat of a success.

The presence of the dance sessions alone and the chance they offered PwP to exercise made well- being feelings of vitality a possibility. This possibility was further facilitated through the sessions being so inclusive of all-comers’ abilities meaning that all could potentially experience feelings of being energized and wanting to move. Furthermore, there was a perception that the dance could hold symptoms back, suggesting that it could stave off suffering experiences of stasis and exhaustion.

The embodiment dwelling-related well-being experience (Comfort)

K. T. Galvin and Todres (2011) term embodiment dwelling-related well-being “Comfort”. We are not necessarily conscious of this feeling of comfort because of the sense of ease it brings in contrast to the suffering experience that K. Galvin and Todres (2013) term “Bodily discomfort and pain”. The suffering experience of Bodily discomfort and pain makes dwelling in the body uncomfortable and difficult (K. Galvin & Todres, 2013) and may resonate with PwP because their bodies can be unpredictable and uncomfortable to be in. The well-being experience of comfort means that a person feels at home, relaxed and settled in their body rather than pre-occupied with it as something that does not work (K. T. Galvin & Todres, 2011). The findings from our study indicated that the dance sessions offered PwP a well-being experience of comfort because sessions were relaxing, and people were encouraged to do what they were comfortable doing on the day and/or according to their capabilities.

You can put in as much as you like. (Dancer 11)

Furthermore, the different movement options the dance artists created meant that all could feel at home in their bodies.

Well people are not made to feel bad if they can’t do one kind of exercise it’s not a problem. They (the Dance Artists) can give them an alternative one.

(Supporter 5)

It’s done so you can cope. There is the most essential movement and then maybe you can do a bit more - you progress.

(Dancer 8)

Dancers feeling at home in their bodies was observed by others too, as Dance Partner 4 indicated: “It is the first time I have seen him (Dancer 2) stood up straight”.

The embodiment dwelling-mobility well-being experience (Grounded vibrancy)

“Grounded vibrancy” conjoins “Vitality” and “Comfort” and enables a feeling of moving forwards hence: “Well-being as a sense of grounded vibrancy is any bodily experience where variations of rest and comfort are intertwined with alertness and vibrancy” (K. Galvin & Todres, 2013, p. 96). K. T. Galvin and Todres (2011, p. 11) refer to grounded vibrancy as energized flow or mobility with deep feelings of at-homeness in the body, “ … ‘a humming vibrancy that is attracted to unfinished horizons’”. By contrast the suffering experience related to embodiment dwelling-mobility (Painful closing down) is characterized by the body not enabling mobility or allowing the peace to dwell in it because of symptoms such as pain; the body feels overwhelmed with discomfort, that it is failing and becoming diminished. For PwP in this study it did not appear that this was the case. Indeed, the exercise helped to relieve symptoms and helped to improve or maintain movement as well as posture. Dancer 17 had also found that his suppleness was improved through dancing as the researcher noted in a discussion with him:

(He) started to tell me how his body had become less stiff during the session. As he did so he demonstrated by stretching his arms out to the side like wings. He told me that sessions help him generally meaning that he is ‘less achey’. He qualified this to me as having fewer aches and pains in his back and arms.

(Researcher notes)

The dance enabled bodily experiences of rest and comfort intertwined with alertness and vibrancy because PwP could do as much as they wished and take breaks as required. Individuals could be unaware of the movement they had achieved suggesting that they were comfortable and deeply at home in their bodies at those times.

Dance Artist 3 explained the use of imagery in sessions and that it was possible that dancers could achieve movements without realizing:

… All of the imaginary things at the beginning especially, helps people overcome what, they don’t realize they’re doing it basically … imagery will really help them to move in a different way. Rather than saying ‘stretch your arm’ … we’re going to reach (dance artist’s emphasis) for like a box of chocolates or something like that, so using that imagery helps in a way they don’t realize they are moving, they don’t realize they’re doing it as well.

The whole of the dance context appeared to be one of grounded vibrancy as rebellion against potential painful closing down.

Supporter 7 had also noticed how PwP could be unaware of their gains:

Sometimes they don’t realize they have achieved something new until it’s mentioned to them.

And the researcher had noted how PwP responded to the repetitive movements in marching activity. The repetitive movements appeared to enable increased and coordinated movement as time went on. The researcher was not alone in her observations for example during discussion Dance Partner 2 told Dancer 6 how she had noticed the effects repetitive movement had on him:

you’re (referring to Dancer 6) looser, not so stiff and you are better with your feet.

As she explained to the researcher:

’cos repetitive feet movements (says the Dancer’s name) couldn’t do them before and I’m finding because of this environment he’s doing them without thinking.

Dance Artist 2 explained how repetition gives confidence with movement. She told the researcher that she sees that people feel why it helps them and that “Dance is embodiment and movement memory”. The Dance Artist had noticed the effect of embodied memory (which she explained as “Memory of how to … and engrained in bodies”) in those returning regularly and in PwP who had been there from the very start of the project.

Study limitations

A specific limitation of this study was the scope of the sample because the study was necessarily limited to one geographical area and one Parkinson’s dancing group. Furthermore, the sample included people who regularly attended but it did not account for those who did not return. The nature of the sample was out of our control but the reasons for individuals choosing not to return could be considered in future evaluation studies.

Conclusion

The purpose of the exploration and novel application of K. T. Galvin and Todres (2011) Kinds of Well-being Framework to our findings above has been to offer theoretical insights into how Parkinson’s dance activities may translate into experiences of well-being. We have shown how our findings link with the 18 qualities of well-being that feature in the framework and based on this, we propose the Parkinson’s Dance venture we evaluated was an effective resource for well-being.

This paper has presented the evaluation of a Parkinson’s Dance well-being venture set up to help those experiencing Parkinson’s to manage their conditions and improve their lives and prospects. The purpose of our study was to gain the perspectives of the dancing community about how the sessions may have helped them. Our findings contribute to the evidence base about the benefits of dance for PwP. Participating in the Parkinson’s Dance sessions meant that PwP could experience the possibilities to dance, to develop a “can do” attitude, experience fun, enjoyment, social connection, exercise, movement to music, improve and/or maintain their balance, suppleness, coordination and confidence with movement, to push symptoms back and learn new things. PwP benefitted from the experiences of “The experience of moving to music”, “The experience of freedom, learning and change of attitude”, “the experience of social connection and joy”. Through the exploration and novel application of K. T. Galvin and Todres (2011) Kinds of Well-being Framework to our findings we have begun to offer theoretical insights into how Parkinson’s dance activities translate into experiences of well-being and the interconnected nature of embodied well-being. We used the kinds of well-being framework of K. T. Galvin and Todres (2011) to help in this venture because it illuminates the multi-faceted nature of human well-being and because it resonates with dance scholarship and practice. This is a first attempt at applying the well-being framework to the context of dance and in the future, it would be interesting to explore whether it also relates to well-being consequences of other art activities. Furthermore, the use of the well-being framework as the basis of an evaluation tool in qualitative evaluations may be a consideration going forwards.

Acknowledgments

We would like to thank all those involved with the Parkinson’s Dance project and the research participants for their contributions to the evaluation study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the Big Lottery Fund.

Notes on contributors

Elizabeth Norton

Elizabeth Norton I am a Senior Academic in the Faculty of Health and Social Sciences, Department of Medical Science and Public Health. I am also a member of the Bournemouth University iWell Research theme. I am Postgraduate Lead for the Medical Science and Public Health Department and a PhD supervisor. I am a member of the MSc Public Health programme teaching Team and a Unit Leader. My teaching/learning facilitating responsibilities mainly relate to Public Health, Health and Research units. My research activity is in the field of public health particularly in relation to the role of The Arts and nature in health and wellbeing. In terms of research methodology my interests are in qualitative methods and specifically Grounded theory.

Ann Hemingway

Ann Hemingway My work is international and national research focused on reducing inequalities in health outcomes for different groups. I work on social innovation (co-production) and non-medicalised approaches to health & wellbeing with a particular focus on arts, nature and animals. I regularly receive research funding from international and UK funders and publish in peer reviewed international publications.

Caroline Ellis Hill

Caroline Ellis Hill My interest lies in health and social care research, education and practice which supports being fully human, through taking a lifeworld-led approach. In this approach, consideration is given to what life feels like from the inside out, not only as seen from the outside in. Understandings are relational, ongoing and embodied. This approach is based on existential understandings from philosophical lifeworld approaches and focuses on what make us feel human. Humanising practices are those that incorporate this human knowing and support a sense of connection and wellbeing for both staff and service users. I am interested in the wellbeing of staff and service users in health and social care in general, building on my experience in occupational therapy and psychology within acquired physical disability.

Appendix 1.

Findings as a poem

A Poem: ‘What goes on’ (reflections of a participant observer of Parkinson’s Dance)

What goes on feels and looks like joy.

What goes on feels and looks like fun.

What goes on feels and looks playful.

What goes on feels and looks like it lightens the heart.

What goes on feels and looks graceful.

What goes on feels and looks creative.

What goes on feels and looks like effort.

What goes on feels and looks like ‘I can do it’.

What goes on feels and looks like we’re all the same.

What goes on feels and looks uplifting.

What goes on feels and looks like being free.

What goes on feels and looks like acceptance as a human being.

What goes on feels and looks welcoming.

What goes on feels and looks inclusive.

What goes on feels and looks encouraging.

What goes on feels and looks like support.

What goes on looks and feels motivating.

What goes on feels and looks like we’re ‘in it together’.

What goes on feels and looks like being daring.

What goes on feels and looks like rebellion.

What goes on feels and looks like embodied music memories.

What goes on feels and looks like embodied movement memories.

What goes on brings recollections of the past.

What goes on feels and looks like it helps.

What goes on feels and looks like it builds confidence with movement.

What goes on feels and looks like it helps with movement.

What goes on feels and looks like space is needed.

What goes on feels and looks like a challenge.

What goes on can feel and look like moving apace.

What goes on is dancing, singing and connection.

That is what goes on!

Appendix 2.

Indicative Semi-Structured Interview Guide Parkinson’s Dance Sessions

To Participants with Parkinson’s: Do you feel that coming to the dance sessions has affected your life in any way? Researcher can explore if so, how?

How do you feel when you are dancing in the sessions?

Has dancing in the sessions affected your balance at all?

Has dancing in the sessions has affected your co-ordination at all?

Has dancing in the sessions affected how supple you feel at all?

Has being a dancer in the sessions affected your confidence at all?

Researcher can explore issues based on responses.

Is coming to the sessions a chance for you to socialise? Researcher can explore if so, how?

Looking back, have the dance sessions affected how you move in any way?

Researcher can explore responses.

Have the dance sessions affected how confident you feel about moving?

Researcher can explore responses.

How does dancing in the sessions make you feel?

Have you gained anything by joining in these dancing events?

Researcher can explore responses.

What is it that has brought you back to sessions? Researcher can explore responses.

Does anything you have learned in the dancing sessions help with your movement?

What has it helped you to do?

Researcher can explore responses

To Dance Partners: Are there any ways you think the dance sessions have affected your “partner’s” life at all? Researcher can explore if so, how?

Have the sessions affected your “partner’s” balance at all?

Have the sessions affected your “partner’s” co-ordination at all?

Have the sessions affected your “partner’s” suppleness at all?

Have the sessions affected your “partner’s” confidence at all?

Researcher can explore issues based on responses

Is coming to the sessions a chance for you to socialise? Researcher can explore if so, how?

Is the experience of coming to the dance sessions supportive (e.g. Friendly, helpful, an opportunity to ask questions, positive)? Researcher can explore if so, how?

Looking back, have the dance sessions affected the way your “partner” moves?

Researcher can explore if so, how?

Has their confidence about moving been affected at all? Researcher can explore responses.

To Dance Artists:

Have the sessions affected dancers with Parkinson’s balance at all?

Have the sessions affected dancers with Parkinson’s co-ordination at all?

Have the sessions dancers with Parkinson’s suppleness at all?

Have the sessions affected dancers with Parkinson’s confidence at all?

Researcher can explore issues based on responses.

Do participants socialize in sessions? Researcher can explore if so, how?

Is the experience of coming to the dance sessions supportive (e.g. Friendly, helpful, an opportunity to ask questions, positive)?

Researcher can explore if so, how?

Have the dance sessions affected how the dancers with Parkinson’s move? Researcher can explore if so, how?

Are there instances when you have seen the dancers with Parkinson’s grow in confidence in relation to their movement?

Researcher can explore if so, how?

To Supporters: Is the experience of the dance sessions supportive (e.g. Friendly, helpful, an opportunity to ask questions, positive)?

Researcher can explore if so, how?

Is coming to the sessions a chance for you to socialise? Researcher can explore if so, how?