Dance is more than therapy: Qualitative analysis on therapeutic dancing classes for Parkinson’s

Complementary Therapies in Medicine 34 (2017) 1–9

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Dance is more than therapy: Qualitative analysis on therapeutic dancing classes for Parkinson’s

MARK

⁎

Priscila A. Rochaa,b, , Susan C. Sladea, Jodie McClellanda, Meg E. Morrisa,c a b c

La Trobe Centre for Sport and Exercise Medicine Research, School Allied Health, College Science, Health & Engineering, La Trobe University, 3086, Australia CAPES Foundation, Ministry of Education of Brazil, Brasília, DF 70040-020, Brazil Healthscope, Northpark Private Hospital, Plenty Road Bundoora, 3083, Australia

A R T I C L E I N F O

A B S T R A C T

Keywords: Parkinson’s disease Dance therapy Complementary therapies Qualitative research

Objectives: To understand the benefits and limitations of therapeutic dancing classes for people with Parkinson’s disease (PD) and how best to design and implement classes. Design: A stakeholder forum explored the opinions of 18 allied health clinicians, dance instructors, people with PD and caregivers. Data were thematically analysed and interpreted within a grounded theory framework. Results: Four main themes were identified: (1) the need to consider the stage of disease progression when designing classes; (2) recognition that dance is more than just therapy; (3) the benefits of carefully selecting music to move by; (4) ways to design classes that are both feasible and engaging. These themes give rise to the theory that dancing classes can provide more than just therapeutic benefits. Dance affords creative expression and enables people to immerse themselves in the art-form, rather than focussing on the disease. The results highlight the benefits of enabling individuals with PD to be able to express themselves in a supportive environment that does not see them solely through the lens of Parkinson’s. The feasibility of dance programs can be increased by educating dancing teachers about PD and the unique needs of people living with this condition. Conclusion: Well-structured dance classes can promote social-connectedness and joy, in addition to facilitating movement to music and physical activity. Consumers advised that careful planning of the classes and tailoring them to participant needs optimizes outcomes.

1. Introduction Exercise and physical therapy are part of comprehensive care for people living with idiopathic Parkinson’s disease (PD).1–5 Parkinson’s is a debilitating condition with variable presentation of motor and nonmotor signs.6–9 Gait disturbance, movement slowness and other movement disorders such as freezing of gait, rigidity and postural instability have been a key focus of conventional physical therapy.2,4,10,11 As the disease progresses, non-motor symptoms such as cognitive impairment, anxiety, depression, fatigue and social isolation can also occur.7,8,12 These symptoms can compromise health-related quality of life (HRQOL).7,12–15 In turn there can be a decline in physical performance,16–19 depression.13,20 and reduced social connectedness.21,22 Contemporary clinical practice aims to address the motor and nonmotor signs of PD, and encourages self-management within an interprofessional model.23–27 Clinical guidelines highlight the importance of an integrated approach.28 Therapeutic dancing has been advocated as an effective component of movement rehabilitation.24,29–33 Dancing

incorporates creative expression and long-term participation in vigorous physical activity.34,35 It is also considered to be enjoyable31,36–38 and can be associated with improved HRQOL.39–41 There is increasing interest in dance as a complementary therapy, with a range of studies investigating different dance genres, music rhythms, class structures, class durations and frequencies of dance programs.34–36,42–45 According to McGill et al.33 dance studies have reported positive changes in symptoms, although they do not always adequately explore how dance influences psychological, emotion and social factors. Individuals living with PD can have multidimensional needs37 and consideration of their preferences can assist with the development of a feasible dancing program.37,38 Although some studies have reported the experiences and beliefs of people with PD regarding dancing programs, they have been restricted to a small number of dance genres, such as Irish set dancing37 and mixed dance classes.38 There is a need to explore the beliefs of consumers and health professionals who have experienced PD dance programs to understand their views, needs and preferences about dance.

⁎ Corresponding author at: La Trobe Centre for Sport and Exercise Medicine Research, School Allied Health, College Science, Health & Engineering, La Trobe University, Melbourne, VIC, 3086, Australia. E-mail address: [email protected] (P.A. Rocha).

http://dx.doi.org/10.1016/j.ctim.2017.07.006 Received 14 February 2017; Received in revised form 17 July 2017; Accepted 18 July 2017 Available online 23 July 2017 0965-2299/ © 2017 Elsevier Ltd. All rights reserved.

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The aim of this research was to explore the experience of therapeutic dancing for people living with PD and summarise important class design elements.

Table 1 Questions used in the forum. Considering dance programs for people with Parkinson’s disease:

2. Methods

1) 2) 3) 4) 5) 6) 7) 8) 9)

We used qualitative research methodology to inform the study design, data collection and data analysis. The study was conducted and reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ)46 and the Standards for Reporting Qualitative Research (SRQR).47

What should be the focus of dance for PD? How should class structure be designed and implemented? What dance styles should be included? How repetitive should the content of the classes be? What should be the duration and frequency of classes? Should participants be separated into different groups? On what criteria? How does music assist dancing? What should dance instructors and assistants learn about Parkinson’s disease? Who should partner people with Parkinson’s during the classes?

2.1. Eligibility, recruitment and selection of participants Two researchers (PR, SS) independently reviewed the transcripts multiple times to achieve familiarity with the data and to identify the main codes, categories and emergent themes. Each researcher independently extracted potentially relevant quotations, grouped the codes into categories and collapsed these into preliminary themes. The analytic process was iterative and the two researchers (PR, SS) repeated the code, category and theme development independently and conducted three documented skype meetings, followed by confirmation emails, until consensus was reached for the final set of themes and subthemes. Representative quotes for each theme were selected by each researcher and these were pooled together to support the identified themes. Two other researchers (MM, JM) were available for consultation throughout the analysis process. After consensus was reached between PR and SS, the third and fourth researchers (MM, JM) independently reviewed the themes and sub-themes for context and accurate representation of the data. Data analysis was complete when all of the researchers agreed on the final themes, supporting quotes and emergent theory. The rigor of the research was enhanced by testing credibility, transferability, dependability and confirmability.53 Credibility was enhanced by two researchers independently reviewing the data coding, category development and discussing emergent themes. Transferability was enhanced by recruiting a variety of participants from diverse professional, health backgrounds and duration of PD. Dependability was enhanced by audio-recording the forum, note-taking throughout the forum, independent verbatim transcription of audio-recordings, comparison of the audio-recording against the transcripts and documentation of findings from data analysis. Confidence in confirmability was achieved when the same codes and themes emerged from participants of different backgrounds.

Participants were invited by email from a list of stakeholders who were known to the researchers and who met the inclusion criteria. The sampling strategy ensured that participants had experience of dance therapy and could contribute in English. To be included, individuals with PD needed to have previously participated in therapeutic dancing classes, be stages I–III of the modified Hoehn and Yahr scale (HY)48 and not have cognitive impairment assessed by the Mini Mental State Examination.49 Dance instructors needed to be skilled in teaching different dance genres and have experience of dance for PD. Allied health clinicians such as physical therapists, music therapists and occupational therapists, were included if experienced in treating people with PD. People who were not able to give informed consent or not available to travel to the venue were excluded. 2.2. Ethics consideration The research was approved by the La Trobe University, Australia, Human Ethics Committee (S16/119). Witten informed consent was provided by all participants prior to the commencement of the forum. Participants were assured of confidentiality and anonymity and were de-identified by pseudonyms in the transcription documents. The participants were given equal opportunity to speak freely and openly during the forum. 2.3. Data collection Data were collected in a three-hour stakeholder forum. A forum was selected to enable a large sample of a diverse group of people to contribute to the discussion on one occasion.50,51 In preparation for the forum, a briefing document summarising the published literature on dance for PD was sent to the participants. The meeting was held in 2016 at La Trobe University, Australia and facilitated by an independent postdoctoral physical therapist (SS), with extensive experience in qualitative research. Two allied health clinicians (PR, LF) took briefing notes regarding behaviours, body language and opinions of participants. The meeting was audio-recorded and independently transcribed verbatim. The stakeholder forum utilised a pre-prepared ethics-approved briefing document based on the literature and focus group methods50 and a set of open-ended questions to guide the forum discussion (Table 1).

3. Results Twenty people were invited to the forum and 18 agreed to participate. The stakeholder forum included six allied health clinicians (four physical therapists, one occupational therapist and one music therapist), five dance instructors, five people diagnosed with PD and two caregivers (Table 2). The mean disease duration of people with PD was 8.8 years (range 2–20). An overarching theme that emerged from this research was that therapeutic dance links exercise, management of movement disorders and the artistic experience. People’s experiences in dance therapy programs were influenced by the overall artistic experience, the selection of music, the expertise of the dance instructor, disease stage and the infrastructure of the dance venue. Emergent themes from the forum are detailed below, along with discrete subthemes and supporting participant quotations. The quotations are linked to the data by participant codes, followed by their qualifications (people with PD [PD], caregivers [C], dance instructors [DI], physical therapists [PT], occupational therapists [OT], music therapists [MT]), transcript page and line number(s) [eg. S: PD. T1, P8: 340–350].

2.4. Data analysis The data were thematically analysed, within a grounded theory framework, to link the findings to the participants and allow for the potential generation of new theory.50,51 This theoretical framework was based on recognition of codes, categories, themes and sub-themes in the data and identification of the associations between them.50 In order to conduct the research with rigor, credibility and relevance, the researchers were informed and guided by the Critical Appraisal Skills Programme (CASP) checklist for qualitative studies.52 2

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physical, emotional and social benefits. One dance instructor advised that specific therapy goals were not always necessary when designing dance classes for people with PD and stated that the essence of dance could be missed if therapy goals were too prominent. Some physical therapists volunteered that the needs of participants are of paramount importance for a successful dance program for people with PD. At the end of the discussion, all participants agreed that dance promotes more than just motor benefits. It can also assist in socialization and shortterm relief of feelings of depression and anxiety (Text box II ).

Table 2 Characteristics of participants. Participant (codes)

Description

Age (years)

Sex

G K KE R A D P MY JE W BE Z H S D J M JO

Dance Instructor Dance Instructor Dance Instructor Dance Instructor Dance Instructor Dance Instructor Physical Therapist Physical Therapist Physical Therapist Music Therapist Occupation Therapist Person with PD Person with PD Person with PD Person with PD Person with PS Caregiver Caregiver

52 50 25 41 28 55 NP 66 NP 48 25 73 71 69 67 80 75 83

F F F F F F M F F F F F F F F F M M

3.3. Theme 3. The benefits of carefully selecting music to move by According to the participants, carefully chosen music can help people with PD to move more easily, improve their emotional state and create an enjoyable environment. Some components of music, such as rhythm and melody, might trigger motor and emotional responses. This theme includes three discrete sub-themes: a) Moving with clear and strong beats; b) Music facilitates motor learning and emotional responses; c) The impact of lyrics and voice on movement. Most stakeholders volunteered that music with clear and strong beats helps participants to focus on movement and enables them to move more easily. Some of the people with PD reported that using music with a strong rhythmical beat helped them to manage “freezing of gait” episodes. Also, hearing the footsteps while dancing helped some to feel more confident and move more easily. According to some physical therapists, the key aspect was to use music to facilitate movement (Text box III ). Some participants suggested that music can produce different emotions, feelings, and attitudes. For example, several people with PD mentioned that listening to music enabled them to consolidate and memorise the steps which were taught during the classes. It also elicited a perceived physical response, helping them to feel better. According to dance instructors, choosing music according to participants’ preferences may evoke memories, enhancing the emotional, physical and social benefits of dance classes (Text box IV ). Some stakeholders indicated that music with lyrics could change the focus of activity and add complexity. They mentioned that same language lyrics could be distracting, bringing the attention to the lyrics and away from the movement. According to some allied health clinicians and dance instructors, music with vocals could be incorporated in different activities with different purposes, such as dual task training, creative dancing, relaxation and socialization (Text box V ).

Abbreviations: M male; F female.

3.1. Theme 1. The need to consider the stage of disease progression when designing classes Dance instructors and people with PD had a range of beliefs regarding how therapeutic dancing classes should be organised. Some of the participants with PD reported that having people in the classes who had severe movement disorders, cognitive impairment or marked disability could sometimes make them feel uncomfortable. They advised that it might be preferable to have dance groups stratified according to a person’s level of physical ability. Others disagreed and welcomed people with a range of disabilities and impairments. Moreover, some of the dance instructors viewed stratification of classes according to level of disability as potentially discriminatory. They thought that grouping people in this way might evoke a sense of rejection in individuals with more severe symptoms. According to some of the teachers, a dance instructor should be able to modify and adapt activities to accommodate every type of participant within a mixed group (Text box I ).

3.2. Theme 2. The recognition that dance is more than just therapy Many participants with PD identified the treatment of motor symptoms to be the most important therapy goal for the dance classes. According to these participants walking, balance and falls prevention could be the major focus. In contrast, some of the dance instructors placed higher priority on the art of dance. They argued that the complete artistic dance experience affords creative expression and brings

3.4. Theme 4. Ways to design classes that are both feasible and engaging Stakeholders agreed that a feasible and engaging therapeutic dance program for people with PD should consider the following: the structure of the dance classes, the role of partners, the knowledge and

Box 1 Theme 1: The need to consider the stage of disease progression when designing exercise classes. “I did ballet PD in London with the English national ballet. It was a huge class, must have been about 60 people and varying stages, people in wheelchairs and people ambulant, completely across the board. Had a very high level of staffing and that worked because everybody together. It didn’t work for me particularly because I found it too confronting”. D: PD. T2, P2: 12–17 “If you see people who are more advanced then you are it is scary. You know, at the end of the day, you know that that’s where you’re headed”. Z: PD, T2, P4: 84–87 “Personally if I were to go to a dance class for PD specifically I would prefer it to be what we used to call streamed. I prefer to be in roughly the same level because I feel I would make – I’d get more out of it and I would personally make more progress”. H: PD. T2, P2: 49–52 “In some ways it’s terrific (group with mixed level of abilities), because it provides support for people across all the stages of Parkinson’s. So people can support each other, give advice that sort of thing after the class”. K: DI. T2, P3: 42–47 “I can’t imagine what that (separating participants according to stage of disease) would feel like and the consequences of that weighed up with the benefits of all being together and actually having it validated the whole time”. G: DI/PT. T2, P5: 131–134

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Box 2 Theme 2: Recognition that dance is more than just therapy. “I just think dancing is wonderful anyway […] it seems to me that I’m keeping my symptoms in check […] and so for me my thought would be that the goal of a class should be controlling physical symptoms, looking at the physical things because it seems to me, for me, if my motor skills are sort of under control, everything else might hopefully follow”. H: PD. T1, Page 2: lines 21–28 “I think that the motor things are the most relevant ones […] I don’t think that the socialisation and mood elevation should be the point of it, but sometimes it happens, and it’s great”.S: PD. T1, P3: 44–47 “So you go and you dance and you’ve got the exercise and everybody knows that exercise, which it is, it’s a form of exercise, elevates your mood. So one follows the other (benefits of a dance class)”. D: PD. T1, P3: 52–54 “Dance with Parkinson’s, this is not a therapy, this is an artistic pursuit”. K: DI. T1, P5: 113–114 “I think we would miss out on the very essence of what dance is by trying to reduce it to one of those three (motor, non-motor, socialization/quality of life). […] So if you try and separate it, you’re breaking down what dance is, and dance is, in its essence, going to address all those three”. G: DI/PT. T1, P4: 75–83 “It’s what they come looking for, there might be some participants coming motor symptoms, some come for the socialisation, some come for anxiety. I think we need to be flexible to address the person’s needs”. P: PT. T1, P3: 59–63 “In my work, socialisation goals and quality of life goals are equally as important as motor skills. People come to see me to address often clinical goals, socialisation, quality of life, the dealing with or managing depression, anxiety are what they are to do, but what they actually do that addresses those goals, is the dance and music”. W: MT. T1, P6: 152–157

activities and repetition of movement sequences was highlighted. Participants volunteered that in order to learn and enhance their confidence in performing sequences of movements, a lot of repetition was required. Including a variety of movements and dance genres was argued to enhance engagement and participation over the longer term. The classes could include different rhythms such as Argentine tango, tap dancing, mixed genre dancing, creative dancing and free-form classes. Many participants mentioned that dance programs should be personalised according to the preference of participants (Text box VII ). The inclusion of dance partners was seen by many as beneficial. Partners could provide additional balance and support, increasing confidence in performing more challenging steps, whilst dancing by themselves was mentioned by some participants to be helpful in promoting creative freedom. Caregivers, family members, friends, therapists and students, could be helpful as dance partners. Some dance teachers commented that the greatest logistical difficulty was to find people willing to commit to as dance partners during the whole program. Some participants with PD reported that it was not always comfortable to have different assistants in each class and that inconsistency could be confusing. For some of them the consistency of partners was helpful for boosting confidence (Text box VIII ). The lack of a PD-specific qualification for dance instructors and the cost of dance programs was considered to be a barrier to the

qualifications of the dance instructors, and the cost and logistics of the program. A series of sub-themes is included below with supporting participant quotes regarding: a) Class structure and benefits; b) The mix of activities to enhance confidence and engagement; c) Dancing with partners; d) Teaching skills and the importance of instructor qualifications; e) Cost and infrastructure considerations. Most stakeholders agreed that dance classes should last a minimum of one hour per class, at least twice a week, for two months or more. Some argued that it would be ideal to have more frequent or ongoing classes. Extra time for socialization was also mentioned as an important part of the program. People with PD stated that this extra time helped them to gain self-confidence and to understand and cope with some of the non-motor symptoms, such as depression, anxiety and fatigue (Text box VI ). The majority of consumers stated that therapeutic dance classes should include safe and inclusive activities, with repetition and variety of sequences. A mixture of sitting, standing and travelling movements and exercises may be included. Seated exercises could be delivered for participants in all stages of the disease, allowing everyone to participate and increasing inclusiveness. Seated dancing also enables participants to focus on their breathing, motor performance, and to accomplish challenging movement and balance-related activities. Throughout the forum, the importance of including a combination of challenging

Box 3 Theme 3: The benefits of carefully selecting music to move by Sub-theme a) Moving with clear and strong beats. “To make the rhythmic part of the music easier to hear you need to have a very clear beat and it needs to be played in a way that isn’t muddied by other instruments”. W: MT. T2, P6: 190–192 “The instrumentation can have quite a large effect on how easily you perceive the music and how easily you respond to it”. W: MT. T2, P6: 185–186 “(Argentine Tango) the fact that you count, you know, you’re counting in your head, I think is also very helpful with freezing. If you freeze, you freeze. And I think the very act of counting takes your mind off what you’re trying to achieve, move your foot forward”. Z: PD. T1, P19: 600–603 “I think that might be one of the reasons why we think tango really works well, because the variety of music is very wide and rich […] complex […] at the same time, it’s structured in a way that it’s dance music, it’s walking, it’s a marching music to walk to […] you’ve got the freedom within the music within the structure […] So we’ve got both the structure and also the beat”. R: DI. T1, P15: 450–451 / 453–455 / 457–458 / 461–462 “One of our participants up there said she loves the tap dancing because she can actually hear herself moving in the right way, so when she’s putting her foot down she can hear that sound being made”. A: DI. T1, P16: 490–493 “If you’re going to think of it in terms of Parkinson’s one of the key things is to train the person to attend to their movement, and I think music with a strong beat, strong rhythm makes it far easier […] what we’re trying to achieve with Parkinson’s is attention, and beat and rhythm really can help you tremendously to move. You’ve only got one thing to focus on”. MY: PT. T2, P8: 257–259 / 264–266

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Box 4 Theme 3: The benefits of carefully selecting music to move by Sub-theme b) Music facilitates motor learning and emotional responses. “I often put a CD on, that’s has tango music and in my mind, I’m dancing […] it makes you feel as if you’re stronger than you actually are”. D: PD. T1, P10: 271–272 / 279 “(listening to Argentine tango music) keeping alive I think the steps that I’ve learnt, and because there’s a very strong rhythm there, it just helps to consolidate […] You get the rhythm in your head and you then repeat in your mind what you’ve learnt, and I think that’s of benefit”. Z: PD. T1, P10: 274–275 / 284–286 “I took part in (a mixed dance) group, which was moving forward, and both the music in that and the tango music I found were really lovely, and made a big difference to me just enjoying the class because of doing the exercises to the nice music”. S: PD. T1, P18: 543–547 “You can see how people enjoy and how they engage when it’s a piece of music that they’ve brought in. In terms of memory and music, so it’s really beautiful to see what happens when people bring in music and you can see because of a general age group what that’s facilitating in them. You can see some people just go in and become teenagers”. G: DI/PT. T1, P11: 321–326 “The memories that it invokes and psychological states that takes you to. So it’s a very complex thing to say which is the right music”, P: PT. T1, P13: 402–404

data in this research give rise to the theory that participation in dancing classes, for people with PD, can provide more than just therapeutic benefits in motor performance, social interaction and wellbeing. It also affords creative expression and enables people to immerse themselves in the art-form of dance, rather than being defined by the disease. This theory highlights the needs of individuals living with this progressive disease to be able to express themselves in a positive and supportive environment that does not see them solely through the lens of Parkinson’s or their stage of disease progression. The theory also underscores the importance of well-structured and planned group classes that promote social-connectedness and joy, in addition to facilitating movement to music and physical activity. Feasibility was also perceived to be enhanced by increasing the knowledge of dancing teachers about Parkinson’s and the unique needs of people and families living with this condition. This preliminary theory, grounded in the participant data, can be tested in subsequent focus group research.

implementation of safe long-term dance programs. Most dance instructors agreed that they would welcome formal qualifications and certification for consistency and safety. They considered that basic and advanced first-aid certification, baseline qualifications in dance, experience in teaching dance for healthy people, and informative training about the pathophysiology of PD were essential pre-requisites to teaching classes for people with disabilities. For some physical therapists, education regarding PD may include falls risk management, controlling/avoiding accidents, and understanding the disease and motor fluctuations. The formal training could have mechanisms to foster consistency across institutions and organisations. Participants with PD advised that they felt safer and more confident when they knew that the dance instructors had some knowledge of their disease (Text box IX ). People with PD argued that although research has shown the benefits of therapeutic dance, it is still not always covered by health insurances or government funding. Some dance instructors claimed that the cost to implement and deliver dance classes for people with PD is high, and there can be out of pocket expenses. They advised that dance classes often need modification according to the type of facilities available, which sometimes are not ideal to dance classes for people with PD. The following venue features are important to be considered: type of floor, availability of chairs and bars, and the height of chairs (Text box X ).

4. Discussion Results from the stakeholder forum supported recent literature in demonstrating that therapeutic dance classes designed specifically for people with PD can be beneficial for movement disorders, as well as fun and enjoyable.37,38,54 Participants in the current study emphasised the need to target improvement of motor skills as one of the main goals. Recent research have shown that incorporating movement strategies into dance classes for PD can help to alleviate movement disorders and improve the performance of activities of daily living.37,38 These strategies can include the use of music as an external cue.43,55–58 Music with predictable and sharp beats may prepare the motor cortex for upcoming movements, enabling alternative ways to regulate timing and rhythm.59,60 Music beats can be used as a reference to mark each

3.5. Theoretical model The participant data collected in this study have provided a preliminary, and new conceptual understanding of the therapeutic options and benefits provided by dance therapy for people with Parkinson’s disease. We propose that the themes identified from the participant

Box 5 Theme 3: The benefits of carefully selecting music to move by Sub-theme c) The impact of lyrics and voice on movement. “For me it’s probably better without the vocals because if I love them I’d be focussing on the words and if I hated it I’d probably be thinking I don’t like this song and then I’d forget to move properly”. J: PD. T2, P8: 236–238 “Being able to understand the words and the impact of the words may actually stop people dancing. If the words are particularly beautiful and resonate with the person and it has some significance for the person, they might start singing it. If that causes them and the partner dancer suddenly stops and topple over, then that’s not a good thing”. W: MT. T2, P7: 200–206 “If you start to put in music with complex vocals coming through often the focus will then go onto the actual vocal and away from what’s actually helping the person move which is the beat". MY: PT. T2, P8-9: 234–237 “Using different language (is good). The vocal’s there but you’re not being distracted by the content because you don’t understand the language. […] I’m not sure what the language is; we danced to that song but it’s not detracting”. G: DI/PT. T2, P8: 245–251 “But as people get used to it, having the vocals can be of assistance and can be helpful. And if the vocals support the dancing and movement, and support the emotion of the dance then they’re really terrific in having people singing all together at the same time. It’s very powerful. It’s very empowering”. W: MT. T2, P7: 211–215

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Box 6 Theme 4: Ways to design classes that are both feasible and engaging Sub-theme a) Class structure and benefits. “I’m quite tired at the end of an hour, and so I think are most of the other participants. So I would say an hour”. S: PD. T1, P26: 809–811 “One hour is probably as long as you’re going to do that, it gives you time for your warm-up, cooling down at the end, and perhaps breaks in between”. MY: PT. T1, P25: 789–791 “I think once a week is probably not enough. I think twice a week would be a minimum”. D: PD. T1, P22: 705–706 “I think you got to be looking longer term […] I would say the longer the better, that anything less than two months is probably not – it’s not going to get there at all”. P: PT. T2, P18: 576 / 565–567 “She’s (dance instructor) organised now that we have half an hour after the class anyway to socialise. So we get our physical in to gear, and then we stand around a talk to each other […] and that, to me, also helps fight depression or anxiety”. H: PD. T1, P2: 30–32 “Facilitate that half hour coffee afterwards, and the complimentary things that have happened in those half hours after the hour long class that’s run, are inextricably connected”. G: DI/PT. T1, P4: 86–87

movement component within a sequence.59 By incorporating movement strategies as one of the elements of dancing classes, the benefits of this complementary therapy can be enhanced.55,58,61,62 Participants also emphasised the importance of feeling safe and included in the dance classes. Consistent with recent literature,37,63 the stakeholders discussed that therapeutic dance classes may include three different phases: warm-up, selected dance routines and cool-down. The warm-up can include gentle exercises performed comparatively slowly,63,64 activities to increase the awareness of each body part, posture and breathing.37,63 Dance routines can be partnered or solo,29,65–67 incorporating movement strategies training and different motor sequences.37 The cool-down can include activities to bring closure to the session while recognising the accomplishments of each participant.37,38,63 Incorporating activities performed while sitting during these phases was mentioned as an essential part of a dance program. Recent studies37,38,63 and our consumer forum agreed that the overall aim of therapeutic dance classes is to generate feelings of achievement, in addition to memorizing and successfully performing the steps. The scheduling and dosage of dancing classes were noted to be important features. Several authors have suggested that dance programs should be held twice a week, for around one hour, lasting at least two months.29,31,63 Similar dosage was recommended by the participants of this forum as ideal. Besides the one hour of dance class, participants argued that socialization time could also be included. Previous publications suggested that addressing participants needs can increase adherence and compliance to dance programs.37,38 It can be achieved

with participant contribution to music selection and some dance steps, as well as giving ideas and feedback regarding the dance program.54 Rest breaks, toileting and hydration can also be determined in association between participants and dance instructors, increasing the feeling of purpose and self-efficacy of people with PD.37,38 Participants also highlighted the importance of dance instructors having good theoretical knowledge about PD. The training needs of instructors were noted, and their certification was recommended as an enabler of consistency across sites and organizations. Shanahan et al.37 reported that involving consumers, dance instructors and allied health clinicians during the development of PD dance programs enhances relevance, value and usability of the program. In order to promote adherence and compliance with therapeutic dance programs, the needs and preferences of people with PD and the significant others in their lives can be considered.37,38

4.1. Strengths and limitations This qualitative research was conducted in a manner that enhanced the trustworthiness of the results. We have gained an understanding of the important features of dance for PD through personal experiences and opinions of consumers and experts. The limitations of this study included an Australian context and dance instructors with training only in tango, contemporary and tap dancing. Further research may include discipline-specific focus groups with larger sample sizes.

Box 7 Theme 4: Ways to design classes that are both feasible and engaging Sub-theme b) The mix of activities to enhance confidence and engagement. “There should be a bit of each of them, a bit of chair work, a bit of bar work, and a bit of standing up. So people who can stand up have got the chance to really move, but people who don't’ have the confidence have got a good beginning to the class sitting down, where they can feel very secure and safe and wave their arms around and not push themselves over”. S: PD. T1, P8: 205–210 “The complexity of the movements that we can do, and the sequencing and the choreography that we can do with a hand upper body piece can be quite long, quite sophisticated and quite lengthy, because they are so supported (in sitting)”. G: DI/PT. T1, P11: 307–310 “I think that you need a bit of a challenge and you need a bit of repetition […] I think you don’t want to be doing the same thing day in, day out”. D: PD. T1, P22: 696–701 “Repetition is wonderful, because it just allows that confidence to be built up, because anyone whether you’re a professional dancer or if you’re someone coming to a dance PD class, you need to learn it, and people learn at different rates”.K: DI. T1, P20: 631–634 “Introducing new things for variety, stimulation and excitement so that it never gets boring. So you’ve got this wonderful combination of repetition, confidence, and skill development, but new things to maintain interest and also facilitate people being able to enter the class, if it’s an open class at any point”. G: DI/PT. T1, P20: 631–640 “I think it’s wonderful that we can offer such a wide range of different dance genres, because each person has to find what appeals to them and what resonates to them, because at the end of the day, what you really want is for the participants to continue in exercise. We don't want it just to be a one-off session or two-off; you really want to encourage people to participate and continue”. R: DI. T1, P18: 550–556 “I think you will find nearly any style will be really beneficial, and it depends on the expertise of the people who are leading the class”. K: DI. T1, P17: 510–512

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Box 8 Theme 4: Ways to design classes that are both feasible and engaging Sub-theme c) Dancing with partners. “There’s a lot of reasons why you might want to do partner, like you were saying, safety, gives you an opportunity to do movements that you wouldn’t be able to do singly. And, I guess, dancing on your own gives you the opportunity to be doing movements that you want to create yourself. So there’s pluses to every form of dancing - basic value I think”. MY: PT. T1, P20: 612–617 “(dance with partner) it gives you confidence, because there are two of you, and if even if you’re both a little unsure on your feet, you help each other. D: PD. T1, P18: 571–573 “(dance with a partner) I think it’s very helpful, both psychologically and physically […] But it works equally well on your own”. J: PD. T1, P19: 577 “In terms of promoting the class to get people (partners) to come along, as many people as you can is great but I think to promote to caregivers, all paid caregivers, family members, friends, other therapist, volunteers, students, each one of them gets something unique and different out of it. It’s a way of promoting it”. G: DI/PT. T2, P16, 503–507 “It is tricky to have anyone consistently. Consistence is probably the better and most important part of it because those people get used to it and you can learn to share and understand what the purpose of the class is”. K: DI. T2, P16: 526–527 “(during a dance program for PD) I found a little bit confusing that there were a lot of people (partners) that came not for the whole thing, like you said consistency […] I wasn’t really sure who was who and what their role was”. S: PD. T2, P17: 550–554

Box 9 Theme 4: Ways to design classes that are both feasible and engaging Sub-theme d) Teaching skills and the importance of instructors qualifications. “I can go to any other class and keep fit but knowing that someone, that the instructor there understands at least partially what my problems are, I found very comforting”. D: PD. T2, P11: 353–355 “Well you feel that you’re not going to be asked to do something which is too difficult”. J: PD. T2, P12: 362–363 “I would truly welcome some sort of formal certification”. DH: DI. T2, P13: 426–427 “First aid […] teaching practice […] So I think all that needs to be actually preliminary and then teaching to people with other conditions is additional to that”. K: DI. T2, P13: 402–407 “I think safety being the first thing is that I think it’s essential to understand what the pre-disposing potential safety problems are and so I think that’s an absolute pre-requisite. […] If you’ve – wherever you are as a teacher if you’ve got your genre and you’ve got the PD needs, then you’re going to be able to devise a class with whatever genre to accommodate those specific needs with safety”. G: DI/PT. T2, P12, 368–370 / 376–379 “People need to realise that risk of fall with people who have Parkinson’s is actually real and it’s high […] that’s important to understand that person may have an off day or a good day and there’s a whole lot of things as to why that might happen […] they just need to know obviously why the person may fluctuate. […] Stages of the disease: I mean you could use some broad understanding. The fact that people do differ. I think that’s really important that everyone is quite different and quite unique, their Parkinson’s, I think that’s really key”. MY: PT. T2, P11: 335–337 / 343–351

5. Conclusion

many rehabilitation goals whilst still highlighting the artistic experience and enjoyment of dance.

This consumer forum showed dance to be a well-accepted complementary therapy for people living with PD. Participants agreed that dancing can be helpful for improving quality of life and motor symptoms of PD. The majority believed that dance classes can help achieve

Source of support Priscila A. Rocha received scholarship from CAPES – Proc. n° BEX

Box 10 Theme 4: Ways to design classes that are both feasible and engaging Sub-theme e) Cost and infrastructure considerations. “There are studies about the beneficial effects of dance for Parkinson’s. Is there not any way of Medibank covers it or health insurance covers it or the Department of Health covers it? […] Well the research has been done, then what are they doing with that? […] Why not turn it into something practical?” D: PD. T2, P19: 595–598 “I personally think movement (dance) has been wonderful for me and that’s probably more valuable than me going to a physiotherapist or a masseur or something, and yet I can get money back on that because of the medical rebate. And yet I can’t get support for dancing classes that I think are more useful”. H: PD. T2, P21: 673–677 “There are many barriers. I think we’re starting to raise some of the barriers now and cost is huge”. MY: PT. T2, P20: 636–638 “Looking at the costings it’s just I’m paid to teach”. K: DI. T2, P21: 657–658 “You’ve got to work with the conditions, and what the space is […] depends on what you’ve got, the spaces that you’ve got, so if the chair height is really low, that’s really unsuitable for some people”. G: DI/PT. T1, P8: 227–230 “We changed spaces quite recently to a floor we could hear our footsteps, and it does make a big difference”. K: DI. T1, P17: 514–515 “We changed spaces quite recently to a floor we could hear our footsteps, and it does make a big difference, the audio component, being able to hear your footsteps of if you’re letting the heel drop. And you establish a group rhythm as well, and that makes people feel more confident really, they’re doing it at the right time and that sort of thing”. K: DI. T1, P17: 514–519

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9407/13-8. CAPES Foundation, Ministry of Education of Brazil, Brasília – DF 70040-020, Brazil..

24.

25.

Conflict of interest

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None. 27.

Acknowledgements The authors thank the Johnson sisters and Tapfit, the dance instructors Katrina Rank, Rina Sawaya and Dianne Heywood, and the assistants Lisa Furlong, Mary Serutto and Yasmin Sabre for helping us during the preparation of the study and data collection.

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