WHAT AFFECTS DO MUSICIANS PLAYING MUSIC IN CANCER HOSPITAL WARDS BRING?
LESS CONCERT MORE CARESS
A MULTI-METHOD QUALITATIVE STUDY OF HEALTH AND WELL-BEING OUTCOMES FROM PROFESSIONAL LIVE MUSIC PERFORMANCE IN RBWH CANCER CARE SERVICES
Kristy Apps
s2777122
Supervisor
Naomi Sunderland
Submitted in [partial] fulfilment of the requirements for the degree of Social Work with (Honours)
School of Human Services and Social Work School of Health Griffith University
Abstract
Purpose: This study investigates health and well-being impacts of live music performance within a hospital oncology setting for patients, families, staff and musicians. Oncology wards can compound cancer-related distress for patients and caregivers and are stressful work environments for staff. This can be due to various factors including implementing painful treatments, busy environments and realities of illness. Public health-care systems are under pressure with limited resources for complementary interventions. Place-based collaboration between community arts, hospital staff and governments may offer a way forward to promote health and well-being in oncology environments. This study offers an exploration of health and well-being outcomes of live music performance in one urban hospital along a continuum from individual benefits to macro-fundamental benefits.
Method: A qualitative multi-method research design was implemented using participant observations (n = 8), in-depth interviews with musicians and hospital staff (n = 8) and researcher field notes (n = 1). Observations included all participants in the vicinity of live music performances in one urban hospital over twelve weeks. A total of 216 references across 17 sources were collected. Outcomes where mapped using a Social-Environmental Determinants of Health framework which includes determinants that range from individual to macro social and environmental factors.
Results: Findings of this study highlight a multifaceted interconnectedness between individual, social and environmental determinants of health across participant groups. Participants either self-reported or were observed to receive benefits across the SDOH continuum. Live music impacted individual health and well-being outcomes most significantly at the micro–interpersonal level of social integration and support. At this level music was an icebreaker to deepen connections between patient caregivers in social spaces; used as a conversation starter and strengthened community connections through in-depth conversations. Individual impacts included calming and soothing participants; enhancing gratitude and appreciation for participants and creating feelings of excitement and hope. Meso–community level outcomes suggest that music transformed aspects of the built environment. Decreasing sound stressors within the environment, transformed spaces from stressful and fearful to relaxing and calm. Macro-fundamental outcomes suggest that by decreasing fear and anxiety of oncology environments, live music has potential to decrease social stigma associated with cancer settings.
Conclusion: A scoping literature review found limited research relating to the potential of regular live music performance as an adjunct complimentary intervention in oncology settings. Results of this study indicate that live music interventions impacted individual, interpersonal, social and environmental factors that led to a variety of health and well-being outcomes for participants.
Dedication
For Olivia and Oliver, with all my love.
Acknowledgments
Firstly, I would like to acknowledge and thank my academic supervisor Naomi Sunderland for her support and guidance through this research endeavour. In addition, I extend that thanks to my Course Convenor Pat Dorsett. Secondly, I would like to acknowledge and thank my research partners, Peter Breen, the Director of the Stairwell Project and Dr Glen Kennedy, Executive Director of Cancer Care Services. Finally, I would like to acknowledge Kylee McDonagh, who has provided copyediting and proofreading services according to the guidelines laid out in the university-endorsed Guidelines for Editing Research Thesesi
Table of Contents
Summary ........................................................................................................................9
Introduction ....................................................................................................................9
Background of the Study..............................................................................................10
Policy Context ..............................................................................................................13
Problem Statement .......................................................................................................14
Research Significance ..................................................................................................16
Conceptual Frameworks ..............................................................................................17
Summary of Aims, Research Questions, and Approach ..............................................19
Abstract .............................................................................................................................. iii
Dedication ............................................................................................................................v
Acknowledgments.............................................................................................................. vi
Table of Contents ................................................................................................................. i
List of Tables ..................................................................................................................... vi
List of Figures ................................................................................................................... vii
Key Terms and Concepts .....................................................................................................8
Chapter 1: Introduction ........................................................................................................9 ii
Thesis Structure............................................................................................................20
Conclusion ...................................................................................................................21
Summary ......................................................................................................................22
Introduction ..................................................................................................................22
Scoping Review Method ..............................................................................................23
Findings ........................................................................................................................25
Theoretical Frameworks ..............................................................................................25
Traditional Music Interventions ...................................................................................28
Community Music Interventions .................................................................................30
Challenges of Music Interventions ..............................................................................32
Limitations of Research ...............................................................................................32
Gaps in Research ..........................................................................................................33
Conclusion ...................................................................................................................34
Summary ......................................................................................................................35
Introduction ..................................................................................................................35
Chapter 2: Literature Review .............................................................................................22
Chapter 3: Research Method ..............................................................................................35 iii
Conceptual Framework ................................................................................................35
Methodology ................................................................................................................41
Research sites ...............................................................................................................41
Research participants ...................................................................................................43
Data Collection Procedures ..........................................................................................44
Data Analysis ...............................................................................................................46
Ethical Considerations .................................................................................................47
Conclusion ...................................................................................................................48
Summary ......................................................................................................................50
Introduction ..................................................................................................................50
Results ..........................................................................................................................50
Discussion ....................................................................................................................62
Conclusion ...................................................................................................................67
Summary ......................................................................................................................68
Introduction ..................................................................................................................68
Chapter 4: Results ..............................................................................................................50
Chapter 5: Results ..............................................................................................................68 iv
Micro–Interpersonal .....................................................................................................69
Meso–Community ........................................................................................................72
Macro–Fundamental ....................................................................................................76
Discussion ....................................................................................................................76
Conclusion ...................................................................................................................81
Summary ......................................................................................................................82
Introduction ..................................................................................................................82
Interpretation of Findings.............................................................................................82
Ethical Considerations .................................................................................................84
Significance of the Study, and Recommendations.......................................................85
Limitations of the Study ...............................................................................................86
Conclusion ...................................................................................................................87
Appendix A: HREC Ethics Approval ..........................................................................99
Appendix B: In-Depth Interview and Consent Form .................................................106
Appendix C: Observation Information Form .............................................................120
Chapter 6: Conclusion........................................................................................................82
References ..........................................................................................................................88 v
Appendix D: Structured Observation Data Collection Tool ......................................127
Appendix E: In depth interview questions – Hospital Staff ......................................129 vi
List of Tables
NVIVO Table of Results Individual Health and Well-Being ........................................... 53
NVIVO Micro-Interpersonal Results .............................................................................. 699
NVIVO Meso-Community Results................................................................................... 73 vii
List of Figures
Figure 1. Literature review strategy ...................................................................................26
Figure 2. Social and environmental determinants of health framework ............................40
Figure 3. SDOH framework for live performance in oncology setting .............................52 8
Key Terms and Concepts
Music therapy is characterised by a therapeutic relationship between therapist and patient incorporating individual assessment and ongoing evaluation of client need (Bradt et al., 2015; Burrai et al., 2014; Holt, 2016; O’Callaghan et al., 2013)
Music Medicine (MM) is a passive intervention involving listening to pre-recorded music offered by hospital staff (Holt, 2016).
Hospital Musicians are professional or community musicians working in healthcare settings (O’Grady & McFerran, 2007; Ruud, 2013; Stige, 2012).
Community Music Intervention: addresses community needs through music by fostering cultural engagement. Objectives may be to increase civic pride, community well-being, or social cohesion. They can offer learning and participation opportunities to marginalised groups, address issues of disadvantage or disengagement (Howell et al., 2016).
Musicing, Musicking, Hospital Music, Medical Musicians and Community Music Therapy are often used interchangeably in research with community music.
Community: While there is no one agreed definition of community, it has been explained in research as a group of people with shared narratives and daily experiences that provides dimension to social representations (Murray & Lammont, 2012).
Place-based Health Care: relates to collaborative partnerships in healthcare aim to strengthen communities to build supportive environments for the improvement of health outcomes of the community (Ehrlich & Kendall, 2015). 9
Chapter 1: Introduction
Summary
Chapter 1 provides a background to the study, an overview of current policy contexts, and a summary of the research problem. The significance of the research will be discussed, and a summary of the study aims, research questions and approach will be outlined. A brief description of the conceptual framework will be offered and will be expanded on in Chapter 3. Finally, I will define relevant key terms and definitions, provide a chapter summary and outline the structure of this thesis.
Introduction
Arts in health care is not a new phenomenon. Musicians and artists have understood the benefits of art in hospitals for hundreds of years and have advocated for arts accessibility in healthcare (Baron, 1996). Victorians believed that including visual artworks, plants and decorations in hospitals enriched the lives of patients (Baron, 1996). Mid-20th century modernism elicited the demise of art in hospitals as a new wave of architecture led by Le Corbusier’s (1923), emulated notions of buildings themselves being art (Baron, 1996). This often left patients and families suffering in hospitals surrounded by depressing, colourless walls lacking any vibrancy or enjoyment (Clift, 2012).
An emergence of music in hospitals appeared in the 1940s in the United Kingdom (UK) with the formation of The Council of Music in Hospitals. The council carefully selected musicians and tailored each concert specifically to meet the needs of their audience (Music in Hospitals, 1993). Annually they delivered 3000 concerts throughout hospitals in the UK. Community arts and health practice emerged in the 1960s, drawing linkages to arts, music and health. With the emergence of new knowledge, participatory creative arts were linked to impacting social, individual health and well-being and health practices (Clift, 2012). 10
Oncology wards are often perceived as places of death, dying, danger, shame, stigma, and lower social value (Browall, Koinberg, Falk, & Wijk, 2013; Edvardsson, Sandman, & Rasmussen, 2006; Hoybye, 2013). Noisy machines, sterile smells, sparse walls and clinical practices are unfamiliar, fear-evoking symbols that can perpetuate these negative perceptions. These symbols can also elicit anxiety and worry for patients, families and hospital staff (Edvardsson et al., 2006; Hoybe, 2013). Positive symbols such some artworks depicting beautiful landscapes or positive emotions, pleasurable sounds and positive distractions reinforce messages of a caring environments and decrease social stigma (Edvardsson et al., 2006; Huisman, Morales, van Hoof, & Kort, 2012). Studies of music interventions have found that music can offer people a symbol of life through evoking memories, hope and a connection to a world outside of their illness (see Edvardsson et al., 2006: Batt-Rawden, 2011). Researcher Iyendo (2016, p. 82) describes music intervention in health care as having a “positive effect on patient’s emotions and recuperating processes.” He explains further that “in this way, hospital spaces have the potential to reduce anxiety and stress, and make patients feel comfortable and secure.”
Background of the Study
The link between music, health and well-being is a growing area of inquiry in health contexts worldwide. Researchers have moved away from viewing disease as a medical only phenomenon, to a broader understanding of holistic treatments of body and mind (Harrop-Allin, Hume, Fabian, Etheredge, & McCallum, 2017). Researchers are increasingly recognising the role that social, environmental and subjective interpretations of meaning play in health and well-being (Ansdell & DeNora, 2012; Clift, 2012; Sunderland, Bristed, Gudes, Boddy, & Da Silva, 2012). People’s experience of social and physical environments varies which influence health and thus health disparities. Inequitable access to education, economic opportunity, food and housing all play a major role in community health outcomes. However, 11
Clift (2012) argues that non-material forms of cultural capital such as health perceptions, values, knowledge and behavioural norms can be influenced through creative arts participation. Cultural capital relates to building people’s social abilities and competence for action (Clift, 2012). In a health context, cultural capital supports people on a continuum to improved health and well-being (Clift, 2012). Creative arts programs endeavour to bridge disparities by providing greater access to social opportunities and participatory activities (Clift, 2012). Research indicates that active engagement with music will deliver a greater impact on individuals, eliciting stronger health and well-being implications than music listening alone (Clift 2012).
Music has demonstrated health promoting benefits in oncology settings. However, relatively little research exists exploring health and well-being impacts of live music performance across participant groups including patients, families and hospital staff. Preliminary studies in other health care contexts suggest live music performance can offer unique benefits such as humanising hospital environments through personal connection and social interactions (Harrop-Allin et al., 2017; Toccafondi et al., 2017). Musicians ability to read audiences and adjust performances according to positive and negative affect are another example of ways musicians humanise environments (Harrop-Allin et al., 2017; Toccafondi et al., 2017). These reflexive practices are qualities highly valued in dynamic health care settings and highlight unique benefits of live music (Harrop-Allin et al., 2017; Morley & Macfarlane, 2014; Moss, Nolan & O’Neil, 2007).
Live music performance is often facilitated by community arts organisations that are equipped to provide arts activities in health (Arts Health Network Queensland, 2018). Collaborations between hospitals and community arts organisations can take the pressure off under-resourced health care systems by contributing financial and human resources including program management and facilitation (Swijghuisen Reigersberg, 2017). Community Music 12
Intervention describes music activities implemented by community musicians. Other terms used to describe this practice are medical musicians, community music therapy, hospital music, musicking and musicing. This study will use community music intervention when referring to live music performance in the oncology setting.
Community music intervention uses music to address community need and is generally more concerned with the cultivation of personal and social well-being than biomedical outcomes (Ansdell & DeNora, 2012; Howell, Higgins, & Bartleet, 2016; O’Grady & McFerran, 2007; Ruud, 2013; Stige, 2012). As a form of thoughtful disruption, interventions are designed to elicit new opportunities for participants. Community music pedagogy denotes bottom-up approaches that emphasise negotiation and collaboration between facilitators and participants. Community music is underpinned by social justice principles that confront issues of inequality through a wide range of music making practices. Design of community music interventions is sensitive to the context of music within community contexts and how it can be used to meet community need (Howell et al., 2016; Ruud, 2013; Stige, 2012).
This study focuses on The Stairwell Project, a community music program facilitated by Arts-Health organisation, Jugglers Arts Space. The project uses community music principles through bottom-up approaches with hospital staff and community members that guide choices of repertoire, instruments and locations. Musicians use many forms of engagements from solo or ensemble performances that evoked listening, singing along, dancing and tapping feet. On occasions spontaneous jam sessions or ‘having a go’ of instruments led to more active forms of participation.
The Stairwell Project is a collaboration between arts facilitators, professional/community musicians and hospital executives and staff. Musicians perform music for patients, families and hospital staff in multiple locations of the oncology departments at the Royal Brisbane Women’s Hospital (RBWH) in Brisbane. At the time of 13
this study, the Stairwell Project was run on one day a week in five locations consecutively. Primary instruments used in the project were harp, flute, guitar, piano accordion, keyboards and hand pan.
Policy Context
Researchers Parkinson and White (2013, p. 178) explain that:
The impetus for an international field of arts and health came in 1978 when, under the auspices of the World Health Organisation (WHO), leaders in public health from both developed and developing nations met at Alma-Ata in the former Soviet Union to frame a declaration that the improved well-being of citizens was to be the millennial goal of global public health. From Alma-Ata forward, public health specialists began to think in terms of developing new social norms for health, empowering people towards personal growth and responsibility for their health actions, making increased use of the media for health education and building alliances and support systems which would enable individuals to make healthy choices.
This decade has seen the growth of arts-health policy to include music and arts within multidisciplinary approaches to healthcare (MacDonald, Kreutz, & Mitchell, 2013). New areas of practice have emerged expanding the scope for professional identities and arts health practice initiatives in the arts-health sector (Ruud, 2013). This is reflected in the arts-health frameworks globally which recognise the benefits of implementing creative, participatory or passive arts practices in health care settings (ACSQHC, 2017). This comes with a growing recognition among policymakers of the complex social determinants of health that influence health and well-being outcomes (Sunderland et al., 2012). The Australian National Arts and Health Framework (2013), states that arts and health activities in hospitals can deliver better health outcomes for patients in addition to promoting higher staff retention and shorter patients stays.
Queensland’s Arts Health Network have developed a vision and action plan (2018-2020) to develop a sustainable and effective arts-health sector. They are acknowledging that creativity plays an influential role in the health and well-being of people throughout their life. 14
Priorities for the network include clarifying terminology, initiating long-term strategy and forming and expanding relationships. The increase of practice wisdom and theoretical discourse has increased our existing knowledge of music in health, highlighting the need for further research that supports effective policy changes (Ruud, 2013). While the potential of arts-health practice is increasingly recognised within policy; consistent commitments to funding and program support for arts-health programs is yet to transpire on a broad scale (ACSQHC, 2017).
Problem Statement
The World Health Organisation defines health as “a state of complete psychological, mental and social well-being and not merely absence of disease or infirmity” (World Health Organisation, 2006). Besides symptoms of disease and treatment, cancer patients’ risk of psychological distress is almost twice that of the general population, self-reporting fear, anxiety and worry as common features of diagnosis (Chatterton et al., 2016; Manana, Talwar, & Lone, 2015; Nightingale, Rodriguez, & Carnaby, 2013). Other impacts of cancer include reduced quality of life, premature deaths and social isolation (Edvardsson et al., 2006; Lyle, Hendrie, & Hendrie, 2017). Loss of productivity, employment and out of pocket medical costs often result in economic hardship and loss of identity and purpose (Edvardsson et al., 2006; Lyle et al., 2017).
Family and caregivers of cancer patients also suffer from higher rates of anxiety and depression (Lai, Li, & Lee, 2012). Studies have shown that family members experience levels of psychological distress that exceed that of their loved one living with the disease (Chatterton et al., 2016). Caregiver stress can lead to an array of adverse physical health outcomes for family members and loved ones, often putting their own medical needs last (Lai et al., 2012). In recent years, the role of family members has shifted from bystanders to fully fledged members of the health care team. Family members take on responsibilities of 15
appointment scheduling, sourcing accommodation, symptom management, treatment monitoring and emotional support (Rha, Park, Song, Lee, & Lee, 2015). Interventions that benefit both patients and families/caregivers promote inclusive, accessible and holistic interventions that benefit all. This aligns with social justice principles of community music that everyone has the right to access the highest level of health care possible (Higgins, 2012; Rha et al., 2015).
Oncology wards are typically environments that compound cancer-related distress (Partlak Günüşen, Üstün, Serçekuş Ak, & Büyükkaya Besen, 2019). A multitude of factors such as high busy environments, life-threatening illness, stressful noises, witnessing trauma and painful treatments, all contribute to making this environment more stressful than other health care settings (Partlak Günüşen et al., 2019). As such, oncology hospital staff report higher stress levels, chronic compounded grief, secondary trauma, burnout and compassion fatigue (Hayes et al., 2012; Ko & Kiser-Larsen, 2016; Naholi, Nosek, & Somayaji, 2015; O’Callaghan & Magill, 2009; Partlak Günüşen et al., 2019; Ploukou & Panagopoulou, 2018). Stressful environments and work pressures have led to increasing numbers of burnout of hospital staff. Oncology nursing is a highly skilled and complex speciality that requires a breadth of medical knowledge and emotional resilience. Patients safety and care depends on retaining experienced oncology nurses. Valuing nurses by providing interventions that nurture and support them have the potential to improve retention and well-being (Ko & Kiser-Larsen, 2016).
Community music interventions are one potential avenue for alleviating stress and distress and promoting health and well-being for these diverse groups within oncology environments. Given the level of stressors that patients, families and staff tolerate, promoting supportive healing environments should be a priority within health-care contexts (Ansdell & DeNora, 2012; Swijghuisen Reigersberg, 2017). 16
Research Significance
With rates of cancer growing exponentially the likelihood of the average Australian being affected by cancer before the age of 85, is one in two (Cancer Council Australia, 2017). Cancer is the number one cause of disease in Australia with over one million cancer-related hospitalisations in 2017 (Cancer Council Australia, 2017). The prevalence of cancer in today’s society compels researchers to explore interventions that could reduce pain and suffering for this population. This research is significant in three key areas.
Firstly, by developing a robust body of knowledge through research, public health contexts can incorporate evidence-based practice in music and health care (Clift, 2012). Further research in this area will see increased arts-for-health initiatives implemented, which research suggests are both practical and cost-effective (Ansdell & DeNora, 2012; Clift, 2012; Harrop-Allin, 2017; Preti & Welch, 2011). As an exploratory qualitative research project, this study will inform future research in the area of arts-health.
Secondly, by linking live music performance to health and well-being outcomes for patients, families and staff, this study will alert health-care professionals and policymakers to the potential and limitation of community music intervention as a health initiative. It is hoped that disseminating this information will transpire into actual funding and practical program support outlined in policy frameworks (ACSQHC, 2017).
Thirdly, music interventions are predominately understood in current literature as medical music and music therapy, little discussion of community music intervention exists. Music therapy –is characterised by a therapeutic relationship between therapist and patient incorporating individual assessment and ongoing evaluation of client need (Bradt et al., 2015; Burrai, Micheluzzi & Bugani, 2014; Holt, 2016; O’Callaghan et al., 2013). Music medicine (MM), is described as passive intervention involving listening to pre-recorded music offered by hospital staff (Bradt et al., 2015; Holt, 2016). Studies of music, health and well-being 17
using these two interventions in oncology settings can be found. However, we do not know what role live performance as a form of community music intervention can play in contributing to health and wellness in oncology settings.
Research suggests that music has healing qualities and is often associated with words like soothing and healing. People from all backgrounds and walks of life can access the healing power of music and benefit physically, emotionally, aesthetically and spiritually. In this sense, music is a language that speaks to all. In public hospital settings where populations are diverse in ages, ethnicities, genders, sexualities and abilities, this is valuable characteristic. A multitude of studies have indicated benefits derived from music listening include, emotional regulation, lowering blood pressure, positive distractions, memory arousal and enhanced social interactions (Holt, 2016). Community music interventions have been studied in many other contexts but rarely as live music performance in a hospital setting. This research will deepen our understanding of how live music performance can impact physical environments, social connections and individual health and well-being for diverse oncology populations.
Conceptual Frameworks
Global researchers and policymakers acknowledge that multiple social, environmental, individual, political and economic determinants of health impact individual health and well-being (Lenette & Sunderland, 2016; Stewart & Irons, 2017; Sunderland, Istvandity, Lakhani & Lenette, 2015). As such, frameworks that explore the interplay between social and environmental process play a significant role in progressing future understandings of health and well-being. For this reason, I selected Schulz and Northridge’s (2004) Social and Environmental Determinants of Health framework (SDOH) to expand on existing knowledge of music in oncology. 18
This framework pays attention to how the interplay between social processes and features of the built environment impact multiple levels of individual and population health. Individual and population factors include relaxation and mood regulation. Micro–interpersonal factors are categorised into environmental stressors, health behaviours and social integration and support. At the meso–community level, factors relate to built environments, such as the impact of space and practices within it, and social contexts, such as approaches to care, policy and capacity building. Finally, macro–fundamental level factors focus on macrosocial (human rights and social justice), changing social norms, social and cultural institutions.
This model allows for the exploration and mapping of complex processes between music and health well-being. Many previous studies have perceived music only as a tool to decrease symptoms like anxiety, depression and pain (Harrop-Allin et al., 2017). These studies focused on medical and biopsychosocial models but failed to recognise environmental factors and social processes that are pertinent to oncology environments and the people within them.
Environmental and social factors are both influenced and influencers of “place”. Therefore, I have used placed-based theory alongside SDOH (2004) to further conceptualise the oncology hospital setting as “place”. Further to SDOH framework, placed-based theory highlights the role of governments within the community. The “place” of this study is within a government system and structure; therefore, this relationship is pertinent in this study context. Place-based initiatives are collaborations between governments, healthcare professionals and communities to meet community need within the community (Ehrlich & Kendall, 2015; Howell et al., 2016; Rushton, 2014; Sunderland et al., 2012). To further develop knowledge of the oncology ward and its population, I conceptualise it as a community. In this context, the community is a group of people with shared narratives and 19
daily experiences that provides dimension to social representations (Murray & Lammont, 2012).
The Stairwell Project is a place-based intervention that brings music intervention to people in their cancer-care community. Hospital-based interventions that use place-based collaborative approaches are shown to provide benefits to diverse populations through live music participation (Ehrlich & Kendall, 2015; Howell et al., 2016; Sunderland et al., 2012). Collaborations with patients and families also occur in moments of spontaneous sing-alongs, requests for songs or community participation. I employed a broad definition of the term live music participation to include music listening, music engagement, participation and performing.
Summary of Aims, Research Questions, and Approach
This research explored the impact of The Stairwell Project, a live music project across a range of oncology locations in the Royal Brisbane and Women’s Hospital (RBWH), Brisbane, Australia.
The aims and objectives of this research were to:
1. Develop an understanding of the range of potential health and well-being outcomes of music performance in hospital inpatient and outpatient setting;
2. Compare the health and well-being outcomes of music performance for diverse participant groups including staff, patients, family members and musicians who experience the music; and
3. Begin to understand the impact of music performance on environmental and social determinants of health and well-being in a hospital setting.
The following research questions were designed to address the aims of the study: 20
a. What are the self-reported and observed individual health and well-being outcomes?
b. What are the self-reported and observed collective health and well-being outcomes?
c. How do these outcomes align with social and environmental determinants of health model as applied to hospital settings?
What are the health and well-being outcomes of a regular hospital-based music performance program on oncology staff, inpatients, outpatients, family members and musicians?
I used an exploratory qualitative multi-method design comprised of participant observations and interviews from key informants to answer these questions. I offer a detailed description of the research approach in Chapter 3.
Thesis Structure
Chapter 2 provides a scoping literature review which includes a synthesis of research relating to live music in oncology settings. I review literature about the impact of music and arts-health approaches to health and well-being in a range of cancer-care environments. Chapter 3 discusses the methodology used for the study, including research question and design, participant selection and recruitment, data collection and analysis and ethical considerations. Chapters 4 and 5 present study results concerning the SDOH framework (Schulz & Northridge, 2004). Finally, Chapter 6 concludes the dissertation with a summary and interpretation of findings, significance and recommendations of the research, ethical considerations, and limitations of the study. 21
Conclusion
This introduction chapter has outlined that the purpose of this study is to explore live music performance as a community music intervention that can potentially offer relief, hope, social support to patients, family members and staff. The impact of cancer can be devastating for patients, from painful treatments to loss of income. Family members also suffer a higher risk of psychological and physical illness from caregiver stress. Likewise, hospital staff experience compassion fatigue, burnout and low retention. High stake treatments, busy wards and noisy machines make oncology environments one of the most stressful in health care. As such, interventions that can potentially transform them into caring, supportive and healing spaces could offer potential benefit to oncology communities. I gave a brief introduction to Schulz and Northridge (2004) Social and Environmental Determinants of Health model with placed-based theory as the conceptual framework underpinning the study. I have provided an empirical rationale and background to the study with a brief review of literature outlining the current policy context. Following this, a summary of the studies aims, research questions and approach are presented. 22
Chapter 2: Literature Review
Summary
Chapter 1 outlined the key terms and definitions, a background to the study, research problem and significance and overview of the theoretical frameworks used. This chapter identifies and synthesises current research relevant to the topic. Firstly, I will provide a comprehensive description of the methodology and literature review approach used. Next, I identify and discuss theoretical frameworks used in literature, identifying biological and psychological theories as dominant. I then synthesise literature relating to traditional music interventions and community music interventions. I will discuss the challenges of music interventions and limitations of current research. Finally, gaps in research will be identified and discussed.
Introduction
The therapeutic benefits of traditional music interventions have been widely researched within oncology settings in recent years (e.g., Bradt et al., 2015; Bro et al., 2018; Elwafi & Wheeler, 2016; Ploukou & Panagopoulou, 2018). The two predominant approaches found in research are music medicine and music therapy. Researchers have contrasting views regarding how music in oncology is most effective (Bradt et al., 2015; O’Grady & McFerran, 2007; Wieland & Santesso, 2017). Some researchers suggest that patients preferred listening to pre-recorded music (music medicine) over engaging with music therapists (Bradt et al., 2015; O’Grady & McFerran, 2007; Wieland & Santesso, 2017). Others found live music delivered by music therapists to have unique benefits including enhancing social interactions (Bradt et al., 2014).
This literature review will synthesise research that features live music or music listening as the primary component within oncology settings. I included music therapy that used live music performance in oncology. This literature review found a consensus among 23
researchers that listening to music in all forms can provide positive cognitive and emotional benefits for patients receiving cancer treatment (Burrai et al., 2014; Nightingale et al., 2013). Unique impacts of community music intervention included enjoyment of live music, humanising the environment and providing opportunities for social support (Harrop-Allin, et al., 2017; Toccafondi et al., 2017).
Scoping Review Method
I conducted a two-phase scoping review, consistent with Arksey and O’Malley (2005). A scoping review “rationale” was developed using key features including 1) identifying gaps in the literature whereby a conceptual understanding of the topic is unclear; 2) summarising current literature to inform policymakers, practitioners and consumers; and 3) mapping what is known in this area (Arksey & O’Malley, 2005). Drawing on Arksey and O’Malley (2005), I developed a systematic research strategy which I outline below. Next, I identified relevant studies that related to my research questions and charted data. Finally, I collated and summarised the literature findings (Arksey & O’Malley, 2005). Relevant studies included a broad range of methodologies warranting the use of a scoping review that allowed for an overview of a variety of research and conceptual mapping (Pham et al., 2014).
In consultation with health reference librarians, I identified search terms as “live music” and “oncology”. I then conducted a comprehensive metasearch of the following databases: SCOPUS, PubMed, CINAHL and PsychINFO and Griffith University. Specific search terms included: live music, live musical, music intervention, live concerts, music listening, live music performance, community music AND cancer or oncology. I also reviewed reference lists for additional relevant studies meeting the inclusion criteria. Inclusion criteria were identified as:
1. Studies of people over the age of 18 in oncology and cancer settings;
24
2. Articles published in English;
3. The presence of live music;
4. Published from 2012 to 2018;
5. Review articles; and
6. Journal articles, book chapters, reviews and policy documents
Exclusion criteria included:
1. Music therapy;
2. Music making;
3. Children;
4. Illness other than cancer; and
5. Websites, newspaper articles, journal articles pre-2012.
I then implemented phase two of the search strategy to safeguard the inclusion of all relevant studies of live music or community music across diverse participant groups. In this phase I expanded inclusion criteria to include:
1. studies pre-2012 (n = 3),
2. music therapy if the intervention was live music in oncology (n = 4), and
3. studies sourced from reference lists if directly relevant to the topic (n = 3).
These studies appear as “other sources” in Figure 1. Combining phase one and two, a total of 226 plus ten other sources were retrieved of which 110 were duplicates. Of these, 45 were published before 2011 and 50 were excluded after review. A total of 30 articles were included in the scoping review. 25
Selected studies were conducted in: U.S.A (n = 7); Australia (n = 3); Italy (n = 4); China (n = 3); Greece (n = 2); Denmark (n = 1); The Netherlands (n = 1); Norway (n = 1); Taiwan (n = 1); England (n = 1); Germany (n = 1); and New Zealand (n = 1); UK (n = 1); Canada (n = 1;) Ireland (n = 1), South Africa (n = 1).
Findings
Throughout literature a multitude of theoretical frameworks were used and will be briefly discussed below. I reviewed literature in two sections. In the Traditional Music Intervention section I included music therapy approaches delivered through live music; or music medicine in oncology. Live music delivered by professional or community musicians is reviewed in the Community Music Intervention section. I found one study using community music intervention in a general hospital setting and another study that included community music in an oncology setting. I will identify and discuss these in detail in the review of community music intervention section (Harrop-Allin, et al., 2017; Toccafondi et al., 2017). Iyendo (2017), suggests that live music has an ethical role in supporting hospital environments to become a healing space that assist recuperation.
Theoretical Frameworks
Researchers used a multitude of theoretical frameworks. Many studies used self-report measures of anxiety or stress in combination with other physical or psychological variables such as depression, pain, mood and fatigue (Bradt et al., 2015; Cepeda, Carr, Lau, & Alverez, 2006; Flowers, MacDonald, & Pothoulaki, 2012). Biological and psychological models were used as a broader approach to understanding how music impacts biological, psychological factors. Few studies used biopsychosocial theories. (Bradt et al., 2015; Cepeda et al., 2006). Biopsychosocial model (BPS) developed by George L. Engel in 1977 is a holistic approach to health; however, it does not consider environmental influences (Colvin & Bullock, 2016). 26
Records identified through database searching—according to search terms listed
(n = 226)
Additional records identified through reference lists (n = 10)
Identification
Records after duplicates removed (n = 116)
Screening
Records reviewed for relevance (n = 116)
Eligibility
Full-text articles excluded, for lack of relevance e.g., music therapy (n = 50)
Full-text articles assessed for eligibility (n = 71)
Studies included in the review (n = 30)
Included
Figure 1. Literature review strategy used to ensure inclusion of articles about live music performance interventions in oncology settings
Biological perspectives included how music influences biological changes in the body. For example, music listening can reduce anxiety by suppressing the sympathetic nervous system, and amygdala mediation reduces pain and enhances mood (Bradt et al., 2015). 27
Cognitively, music provides a distraction from the reality of illness and can elicit a calming, soothing effect (Bradt et al., 2015; Chen, Chou, Chang, & Lin, 2018). Psychologically, music affects a sense of control, increases positive thinking patterns, emotional regulation and connection (Colvin & Bullock, 2016). Psychosocially, the relationship between music therapist and patient was an opportunity for reflection and meaning-making (Bradt et al., 2015); between musician and participant, the relationship is created through a human connection (Harrop-Allin et al., 2017).
A biological model used was gate control theory, which explores how musical instruments influence pain (Burrai et al., 2014: van der Wal-Huisman et al., 2018). It suggests that type 2 sensory fibres are activated triggering the inhibitory interneurons that block pain signals to the brain (Burrai et al., 2014; van der Wal-Huisman et al., 2018). Cognitive–behavioural models stipulated that music listening involves a level of cognitive capacity that can modify pain transmission impulses and distract patients from their illness and the hospital environment (Burrai et al., 2014; Chen, 2018; van der Wal-Huisman, et al., 2018; Zhang et al., 2012). Biological and cognitive approaches that focus on individual process and outcomes fail to explore collective impacts and less measurable responses to music, highlighting the hierarchy of western approaches in this arena (Harrop-Allin, 2017).
Other theories found in the literature were psychophysiological theory and psychoanalytic theory. Psychophysiological theory is a scientific study of the interaction between body and mind. It is used in nursing studies to explore the relationship between mental (psyche) and physical (physiological) processes (Huang et al., 2018). Nursing researchers have confirmed that psychophysiological theory explains, in part, how soothing music affects the autonomous nervous system. The autonomous nervous system increases activity during stress, resulting in changes in the neuroendocrine system and the sympathetic nervous system (Huang et al., 2018; Lai, Li, & Lee, 2012. This lowers stress, decreasing 28
cortisol levels, and promotes psychological well-being (Huang et al., 2018; Lai et al., 2012). A study of music interventions for caregivers measured changes in the neuroendocrine system and heart rate of participants (Lai et al., 2012). Findings concluded that a positive effect on physiologic and psychological indices occurred, indicating that listening to recorded music elicited significant relaxation responses in under five minutes (Lai et al., 2011).
As researchers moved outside of the idea of mechanical or biological outcomes, the idea of spirituality emerged. Few studies unpacked the meaning or theory behind this phenomenon in clinical research. Spirituality was explained as a feature of psychoanalytic theory, referring to the way music can tap into our unconscious experiences and “weaken the senses” (O’Callaghan et al., 2013). The dynamic of music can transport and lift people from one emotional state to another, transforming a built environment into a spiritual one where patients find tools to cope (Elwafi & Wheeler, 2016; O’Callaghan et al., 2013).
Traditional Music Interventions
Existing research indicates that medical music and music therapy interventions are both effective interventions in working within illness and generally improved physiological and psychological outcomes (Bradt et al., 2015; Clements-Cortes, & Pearson, 2014). Commonly reported positive effects of music for oncology patients included decreased anxiety and depression, pain and distress as well as increased heart rate, mood and sense of well-being (Bradt et al., 2015; Burrai et al., 2014; Cepeda et al., 2006; Nightingale et al., 2013; van der Wal-Huisman et al., 2018). The Cochrane Review (2016) conducted a review of 52 studies with 3731 randomly selected participants across nine countries (Holt, 2016). It reviewed studies that used music therapy and medical music models with oncology patients (Holt, 2016). The study concluded that evidence relating to the relationship between music and improvement of emotional well-being and health outcomes were likely (Holt, 2016). A systematic review of the effect of music on postoperative recovery in older patients with 29
cancer explored literature of music listening. The author highlights how music intervention is favourable for older patients who are at risk for adverse effects and drug interactions (van der Wal-Huisman et al., 2018). While most studies found a correlation between music and reduced pain others found physical effects to be too minor for routine use (Zhang et al., 2012). A common finding across literature was that when implemented sensitively, music caused no adverse events for patients (Burrai et al., 2014; Wieland & Santesso, 2017).
Preliminary evidence suggests music can have significant benefits for patient’s families, carers and hospital staff (Lai et al., 2012; O’Callaghan & Magill, 2009; Ploukou & Panagopoulou, 2018). Caregivers are exposed to chronic psychosocial stressors known as caregiver stress (Lai et al., 2012). Music medicine interventions have had positive results in alleviating anxiety and stress for caregivers with higher levels of effectiveness reported when nurses were present. Thus, highlighting the importance of relationships between staff and families (Lai et al., 2012). The lack of research about the impact of arts in health on families, carers and hospital staff suggests it is an essential area for future research.
Hospital staff report that by observing patients receiving music interventions they gain positive emotional, cognitive and team effect which subsequently led to improved patients care. (O’Callaghan & Magill, 2009). Hospital staff perceived rapport building and strengthening interactions as consequences of arts activities leading to enhanced communication between patients and staff (Wilson, Bungay, Munn-Giddings, & Boyce 2015). An Australian study using a constructionist approach, with grounded theory informed design, evaluated patients’ personal relationship with music including live music performed by music therapists and how it impacted their experience of cancer (O’Callaghan, McDermott, Daveson, Hudson, & Zalcberg, 2013). Additional thematic responses included accessibility, mood improvement, enhanced perception of being cared for and reconnecting with pre-cancer self (O’Callaghan et al., 2013). Patients perceived live music performance as 30
being cared for. Musicians performed special pieces upon request which patients described as beautiful, affirming and comforting (O’Callaghan et al., 2013).
Community Music Interventions
I found two studies involving community music approaches, one took place in a general hospital setting, and the other in an oncology department. I will first review the community music study in a general hospital setting. Harrop-Allin, Hume, Fabian, Etheredge, and McCallum (2017) conducted a study in South Africa focusing on live music performance by university music students in a general hospital setting, with some participatory elements. Study participants included patients, families, hospital staff and musicians. Results of this study showed that out of 105 completed questions, 93% reacted positively, 7% said it was unwelcome, and 0% said it was irritating. Constructive comments referred to wanting the music in a different location where more people could hear and providing instruments for children to join in.
Student musicians who participated in the study discussed that limitations to participation included physical illness, mobility issues and invisible barriers between the musicians and the participants. Barriers resulted in musicians having to depend on nurses to interpret the mood of sick children. Other students emphasised the emotional challenges of working in a space where “the division between performance and personal interaction is very blurred ... there is no fourth wall between the audience and the performers” (Harrop-Allin et al., 2017).
The authors stress three critical areas that underpin their Conceptual Framework for the Wits Music in Hospital Project (Harrop-Allin et al., 2017). Firstly, a coordinator with considerable experience in facilitating multidisciplinary arts project, with longstanding networks in the arts-health to assume responsibility for the project (Harrop-Allin et al., 2017). Secondly, the full support of key hospital staff would be involved in the orientation and 31
induction of musicians including a daily debriefing. Thirdly, the involvement of student/musicians themselves. This framework featured mutual goals of patients and carer well-being, student development, a commitment to research and enriching collaboration (Harrop-Allin et al., 2017).
The second study was an Italian study of The Music Givers program (Toccafondi et al., 2017), which involved professional musicians performing live concerts in oncology wards. The study used the State-Trait Anxiety Inventory (STAI-Y) (see Spielberger, 1983) and found that participants reported significant improvement in levels of anxiety pre and post-concert (Toccafondi et al., 2017). While not all participants reported an improvement in positive thinking, all reported a decrease in negative thinking (Toccafondi et al., 2017). Researchers thought that changes to patient routine and the hospital environment resulted in a more positive perception of oncology wards. This was seen as a contributor to decreasing negative thought (Toccafondi et al., 2017). Researchers also concluded that social interactions over a catered lunch further developed relationships between patients, hospital staff and families (Toccafondi et al., 2017). Features of the Music Givers include continuity and regularity of performances with high-quality musicians individually selected by the programs’ arts curator (Toccafondi et al., 2017).
Similarly, a Danish study that compared passive listening to the active participation of cancer patients found the connection between patient and musician enhanced a sense of community (Bro et al., 2016). Other additional benefits of live music participation included active engagement such as tapping feet, clapping hands and improvisations in creative processes, compared to internal reflection prominent in recorded music interventions (Bro et al., 2016). 32
Challenges of Music Interventions
Music is not for everyone, and some patients described music as challenging to listen to due to the chaotic nature of cancer and feeling of nausea and headaches, highlighting the need for agency for patients within music programs (Flowers et al., 2012; O’Callaghan et al., 2013; Ruud, 2013). Some patients described their emotional reactions to music as discerning and intense due to a heightened sense of threatened mortality (Flowers et al., 2012; O’Callaghan et al., 2013; Ruud, 2013). These results highlight that while music can enrich the lives of people living with cancer, it may cause intense emotional reactions for some (O’Callaghan et al., 2013). Some studies reported that patients preferred listening to pre-recorded music that was familiar to them. Other patients found the expectation to interact with a music therapist stressful and preferred listening to music alone (Bradt et al., 2015). This highlights the importance of risk management plans between music facilitators and participants to ensure no harm is done (Harrop-Allin et al., 2017).
Limitations of Research
The ambiguity of language, intervention type and variation of practitioner skills and discipline (e.g., hospital staff versus board-certified music therapist) made it challenging to decipher effectiveness of interventions (Bradt et al., 2015). Researcher use terms such as medical music, community music therapy, community music, hospital music, musicking and musicing interchangeably (Bradt et al., 2015; Wieland & Santesso, 2017). It is not always clear if researchers are referring to live music, recorded music or if music therapists deliver it, hospital staff or community musicians (Bradt et al., 2015; Wieland & Santesso, 2017). Some researchers have stated that the numerous delivery methods, conceptual frameworks and a general lack of consensus of efficiency weakened study results (Bradt et al., 2015; Wieland & Santesso, 2017). 33
Randomised and quasi-randomised trials were at a high risk of bias due to patients knowing whether they were receiving a music intervention (Holt, 2016). While authors have cautioned for results to be interpreted, the results clearly show that for many people with a cancer diagnosis music can decrease anxiety and improve mood, pain, fatigue and quality of life (Holt, 2016). Some researchers highlight how further randomised control trials (RCT) would strengthen study results while others acknowledge limitations of RCT due to the need for participants narratives (Bradt et al., 2015; Wieland & Santesso, 2017).
Gaps in Research
People experiencing cancer treatments such as chemotherapy can be left bed bound for days after treatment with nausea and vomiting (Foster, 2014). This can perpetuate depression and anger for patients and can cause further disparities in accessibility to activities that used to bring enjoyment including arts and music (Foster, 2014). Discourse referring to inequity accessing arts and music for people suffering illness is absent in clinical research (Flowers et al., 2012). Providing music in hospitals promotes arts equity and allows new experiences that promote empowerment and agency and a greater sense of community (Batt-Rawden, DeNora, & Ruud, 2005; Colvin & Bullock, 2016; Harrop-Allin et al., 2017; Huisman et al., 2012; Iyendo, 2016; Moss et al., 2007; Sunderland, Lewandowski, Bendrups & Bartleet, 2018).
Gaps in community music research in oncology settings means that little is known about its potential health and well-being impacts for the population. Further research would support the application of evidence-based practice of community music interventions in Australian hospital settings. The concepts of community musicians in hospital settings are common in Europe, UK and Canada where research has led to formalised contracted positions for music performers and a shift from charity or volunteer roles (Preti & Welch, 2011). Many programs in the UK, Canada and Europe implement training courses for professional musicians coming into healthcare environments (Moss et al., 2007). 34
Conclusion
This scoping literature review has provided a summary of current research of music interventions in oncology settings. It identified a variety of conceptual frameworks used in literature to understand how music impacts participants. These included bio-psychosocial frameworks, biological and cognitive frameworks. Further, psychophysiological theory and psychoanalytic theory were discussed. Biological and psychological frameworks were identified as the dominant approach to understanding the link between music and health and well-being outcomes. This chapter has discussed the two primary types of music interventions, music therapy and medical music, and the impact of these on patients, families and hospital staff. Recent studies exploring live music in adult oncology settings were identified and discussed, and the gap in the literature regarding community music interventions in Australia was highlighted. 35
Chapter 3: Research Method
Summary
The previous chapter reviewed scholarly literature on music in oncology settings and identified gaps in current literature. This chapter presents the study methodology including the conceptual framework. It outlines the data collection techniques, data analysis approach, and research ethics arrangements and considerations for the study. Following recent scholarship in the field of music and health, I combined social and environmental determinants of health with place-based theory as my conceptual framework. In this chapter, I provide a comprehensive explanation of the conceptual frameworks and its significance to the study.
Introduction
The literature review identified an absence of research relating to community music intervention and live music performance in oncology hospital settings. While there is an understanding that music generally increases well-being among patients, little research has mapped the outcomes of live music interventions. This research aims to contribute to further research of live music performances by community musicians in oncology settings for diverse populations. This study has provided an opportunity to investigate health and well-being outcomes of the Stairwell Project for the RBWH oncology community.
Conceptual Framework
This study explores a continuum of observable and reported individual, interpersonal, community, and environmental level health and well-being effects of live music intervention in hospital-based oncology care. I used Schulz and Northridge’s (2004) social and environmental determinants of health framework as a way of understanding a wide range of factors that can shape health and well-being. In doing so, I position health and well-being not 36
only as an individual biological or psychological experience but also as an interpersonal, social, environmental and political one.
The framework specifies a continuum of SDOH, including individual factors such as hope and mental health. The next level is micro–interpersonal factors which include environmental stressors, health behaviours and social integration and support (Schulz & Northridge, 2004). The meso–community level factors relate to built environments such as the impact of space and practices within it and social contexts such as what programs are delivered, what approaches to care are used and what policy and capacity building is in place. Finally, macro–fundamental level factors include macrosocial (human rights and social justice, changing social norms, social and cultural institutions) and inequalities (access to arts and activities, distribution of funds and health inequalities).
Community music principles such as the importance of community, social justice and bottom-up approaches align with this SDOH framework. This enabled me to use the breadth of this model to investigate the full range of potential outcomes resulting from the Stairwell Project community music intervention. Key assumptions of the model that guided my study include: (a) Social processes influence and are influenced by aspects of the physical environment, which impacts social and physical environments for health; (b) Unequal social relationships shape health disparities through differences in environmental exposures and access to resources, including access to protective resources; and (c) Collaborative approaches that actively engage those outside of the health sector may be effective in devising sustainable built environment and policy interventions that improve population health.
I chose this framework because it allows me to draw on and develop recent scholarship in the field. Further, it permitted exploration of music participation not merely as an internal individual process but as one that can shape interpersonal, social, and physical factors. 37
Recently, music and health researchers have been using this framework to explore the relationship between music activities, health and well-being with refugee and asylum seekers, low socio-economic communities and First Peoples of Australia and Canada (Harrison, 2013; Sunderland et al., 2018). A study of low socio-economic communities in Canada explored the impact of music participation on determinants of health through addressing issues of poverty, identity, cultural engagement and cultural capital (Harrison, 2013). Cultural capital here refers to building people’s social abilities and competence for action (Clift, 2012). The findings of these studies indicate that music participation can address issues of inequality through increasing skills, education and employment opportunities. Participants experienced increased social rank and socio-economic status, a social determinant of health, which led to improved health outcomes (Harrison, 2013).
This study of a public hospital links cultural capital to the accessibility of public resources, a macro–fundamental level issue within the SDOH framework. In a health context, cultural capital promotes health-relevant activities that support people on a continuum to improved health and well-being (Clift, 2012). Previous studies indicate that patients and families accept public health systems to be under-resourced and as such expect exacerbated environmental stressors (Ward et al., 2015). I argue that increased cultural capital would unite patients, families and hospital staff to challenge decision makers and potentially influence the acceptability and prevalence of community music intervention and other complementary programs offered in hospitals to reduce stressors. Decision makers can decide if hospitals incorporate music and other alternative interventions, in this sense, enhancing participants ability to advocate for live music interventions is an important concept in this study. Previous research indicates that cultural capital is a determinant of health that promotes empowerment (Parkinson & White, 2013; Sunderland et al., 2018). 38
Cultural and spiritual engagement demand recognition in this space but are outside of the scope of SDOH framework (Sunderland et al., 2015; Sunderland et al., 2018). In research of music participation with refugee and asylum seekers, Sunderland et al. (2015), found that outside of SDOH frameworks, music deepened concepts of personal and social identity and cultural expression. Personal and social identity related to people’s pride and excitement to sing songs in their language, also enabling cultural expression. Singing songs together with others who had similar lived experience elicited new shared social identity (Sunderland et al., 2018). Researchers suggest an adaptation to Schulz and Northridge (2004) SDOH framework to include the inclusion of cultural expression, personal and social identity and music making. All results of this study fitted neatly into Schulz and Northridge (2004) SDOH framework as reflected in Figure 2.
In conjunction with the SDOH framework, I used place-based principles to understand the phenomena. A breadth of literature demonstrates that achieving widespread and sustainable health improvement for disadvantaged communities, the focus must be placed on underlying social conditions, health care system, and built environment that has an impact on health. Place-based initiatives are designed to incite changes of fundamental determinants of health in local communities (Dupre et al., 2016). Place-based theory defines “place” as a location where multiple and interdependent issues relate to a specific area. In this context the “place” is in a government facility whereby the government system is responsible for health care of the community, making it a unique and complex environment for place-based initiatives. Place-based initiatives are designed to facilitate the improvement of fundamental determinants of health in local communities (Dupre et al., 2016). While approaches to place-based health initiative differ, theoretical underpinnings incorporate strategic investments in social, economic, and human capital within local settings (Dupre et al., 2016). 39
By using place-based principles alongside SDOH framework I will sharpen the focus of oncology wards as a community and gain further insight into complex issues that implicate it (Murray & Lammont, 2012). Music researcher Brynjuif Stige (2016), echoes the importance of place and space for music activities, arguing that a “more radical approach to understanding human interaction through music is required”. He reiterates the importance of ecological and sociocultural factors when researching music’s benefits. Place-based collaborative partnerships in healthcare aim to strengthen communities to build supportive environments for the improvement of health outcomes of the community (as per Dupre, 2016; Ehrlich & Kendall, 2015; Howell et al., 2016; Sunderland et al., 2018). 40
Figure 2. The SDOH framework, adapted by Schulz and Northridge (2004) from “a conceptual model for understanding racial disparities in health” The model “examine[s] relationships between social inequalities, the built environment and social context, and environmental health” (Schulz & Northridge, 2004, p. 437). 41
Methodology
Qualitative multi-method research design is a form of social inquiry that seeks to find meaning through rigorous research methods often exploring interrelated aspects of a social problem or phenomenon (Creswell, 2014; Roller & Lavrakos, 2017). It uses flexible, inductive approaches that enable researchers to develop insight and understanding about what is being studied. Qualitative design can contribute to theory development, especially when little is known about a phenomenon (Carey, 2009). In hospital settings, qualitative research is a valuable way to explore how health care can be improved for patients, staff and families (Malagon-Maldonado, 2016).
Qualitative researchers often immerse themselves within the context of the phenomenon they are studying to share experiences with participants (Malagon-Maldonado, 2016). A qualitative multi-method research design is a complex holistic approach to research, that retains meaning (Roller and Lavrakos, 2017). Researchers explore phenomenon through multiple research methods, enabling researchers to be immersed in the subject matter from multiple perspectives rather than a series of focus group or observation (Roller and Lavrakos, 2017).
Research sites
I researched at the Royal Brisbane Women’s Hospital (RBWH) located in Herston, a central inner-city suburb of Brisbane, Australia. The hospital provides care to diverse communities within Queensland. Observations took place in five areas in the hospital where musicians played, four areas were specific to oncology, and the other was the hospital entrance. Although not an oncology setting, the foyer was viewed as significant in transitioning people’s experience from outside to inside the hospital. I was not permitted to take photos for data collection purposes. I will, however, offer a brief description of each area of the hospital included in the research to orient the reader to the setting. 42
6A South is an oncology ward where patients are receiving treatment of disease symptoms. Rooms generally house two or three patients, and, in some cases, individual rooms are offered. Musicians perform at the end of the ward in a small nook designed for reading or sitting. The area is small with only space for one or two musicians. It is opposite the nurses’ station. The ward is a bustling environment especially for staff caring for patients and families on the ward. There are multiple stressors built into the environment including noises from machines, hallway obstacles including beds and mobile computer stations and drips. Patients in this ward can be very ill and undergoing intensive treatment.
5C Patient Lounge is a space that has multiple lounges and dining tables. It is designed as a social space where patients and families can relax. It has a kitchen area, television and three recliner chairs. Recliner chairs are often used for patients receiving chemotherapy. Music is performed once a week in this space and is promoted with flyers throughout the hospital. The musician sits opposite the kitchenette and doorway to the lounge, away from the primary social area. People walking past can view the musician. The walls are dark blue with vinyl floors.
5C Outpatient is an area 20 metres from the main waiting area where outpatients wait to see specialists. Musicians were positioned to the left of the stairwell. There are lounges in front of the musician and seats to the left for audience members. It is a very busy thoroughfare for hospital staff. Patients often wait long periods of time here for appointments. Often it is used for informal staff/patient meetings to discuss their healthcare. Staff sometimes eat lunch on the couch near the musicians.
Walkway to Oncology Units is a connection between the main foyer and the oncology areas of the hospital. It is lit with fluorescent lights and is approximately four metres wide and 30 metres long. It is stark besides the artwork on the walls and a few doorways for volunteer rooms and storage. The musician is situated is in a small nook that showcases a 43
large Aboriginal art sculpture behind a glass wall. The lights in this area are dim to allow the light from the sculpture that represents fire to glow. This makes the area warmer and more inviting then the rest of the walkway. The area has a couch in front of the musician and one to the side which are rarely used when the music is not playing. A space designed intentionally for sitting and admiring the Aboriginal sculpture.
Hospital Foyer is the front foyer, or the main entrance to the hospital. People enter from outside into a large foyer with many levels looking down. The musician that plays in this space plays the harp. It is a large instrument and is one of the first things you see as you enter the hospital. It is usually 10 meters from the front sliding glass doors.
Research participants
The aim of the research was to explore the health and well-being impacts of live music across diverse participant groups within an oncology hospital community including hospital staff, patients, families, and musicians. It included people that were in the vicinity of the live music performances within the Oncology Department at the RBWH. Inclusion and exclusion criteria will be discussed in the next section.
Participant recruitment and selection. Participant observations were of all persons who entered the spaces where musicians played unless instructed not to do so by the participant (further information can be found in the ethical considerations section of this chapter). In addition, I recruited staff and musicians for in-depth interviews by collaborating with the Nurse Unit Manager (NUM) and Stairwell Project (SP) Director. The NUM organised staff invites and scheduling to ensure limited disruption for the ward roster. Criteria for hospital staff was that they had exposure to music performances and agreed to be interviewed. Similarly, the Director of the SP invited and scheduled musician interviews. Inclusion criteria were that they had over six months of experience in the project. After consolation with the NUM and SP Director, eight key informants were identified and 44
available for interview. Saturation had occurred by the final interviews of both staff and musicians as multiple common themes emerged. Information and consent forms were given to participants to peruse before each interview (see Appendix E).
Data Collection Procedures
Data collection procedures included participant observation and in-depth interviews. Qualitative observations are often used to complement interviews in research (Malagon-Maldonado, 2016). Researchers use field notes and unstructured or semi-structured templates to observe activities, emotions and behaviours of participants relevant to the research question (Malagon-Maldonado, 2016).
Participant observations. This study used qualitative participant observations to gain an insider perspective. By immersing myself into the environment, I gained an understanding of language and culture within it (Jorgensen, 2011). The weekly experience of live music performance for the oncology community was the standpoint for observations (Jorgensen, 2011). The methodology of participant observation is to reveal meaning and make sense of the realities of peoples experience in daily life (Jorgensen, 2011).
The purpose of the participant observations was to gain an insider perspective on how participants reacted to live music performance. I was primarily looking for changes in participant behaviour and changes to built and social environments. I attended eight musical performances over 12 weeks and completed a structured observation template, recording notes in a field diary (Appendix D). I was positioned in public areas with target populations when musicians were playing. To promote trustworthiness of observations, I discussed my observations with performing musicians and any other project team members present to receive feedback on my initial interpretations of observed phenomena. Any team responses were recorded and used as research data. I was identifiable wearing a red Griffith University T-shirt to ensure I could be recognised if any participants had questions regarding the 45
research. Observations lasted between one and two hours. Questions on the structured template included: Who is in the area? Do people stop, walk slower or sit down when they hear the music? Are people expressing any emotion?
In depth interviews. The purpose of the in-depth interviews was to gain insight into the participant’s ideas, thoughts and feelings about the phenomenon (Malagon-Maldonado, 2016). In-depth interviews provided study participants with an opportunity to self-report their lived experiences of the community music intervention. Interviewees were also asked to share their impressions of the impact of the music performances for other staff, musicians, patients, and family members. As such, the interviews added a layer of reflection to the data and enabled a more cohesive view of diverse participants’ experiences. I ensured the validity of the research by using triangulation, two or more data collection methods that involve different types of samples (Carey, 2009).
I conducted in-depth interviews with key informants that included four hospital staff including the Nurse Unit Manager (NUM) and four musicians including the Musical Director of the Stairwell Project. Participants were invited to interview by the NUM and the Director of the Stairwell Project. I conducted interviews in a narrative inquiry format inviting participants to narrate their experiences of the music performances. This allowed freedom to self-report in ways and on topics important to them (Carey, 2009). Narrative inquiry aided the exploratory nature of this study by allowing researchers to develop and change depending on the narrator’s experience (Carey, 2009). For example, interview participants were not bound by closed questions, they could report on any aspect of the music that was important to them. Open-ended questions prompted responses that related to the research aims and questions (See Appendix E). I transcribed the digital audio recording for each interview immediately following completion of the face to face interview to ensure accuracy. The interviews were immediately deleted to maintain confidentiality and data was transcribed into 46
individual documents in the Microsoft Word software program. The interviews were then saved the interviews on a secure password protected the hard drive and an external hard drive.
Data Analysis
Data analysis included inductive and deductive thematic coding using NVIVO 12. The analysis was conducted in two waves to ensure an accurate and respectful interpretation of participant data and experience. The first was an inductive “bottom-up” thematic coding and the second was a theory-driven deductive thematic coding using Schulz and Northridge’s SDOH framework. The inductive analysis was used to identify, summarize and make meaning of emerging themes in the data (Clark & Braun, 2016). Thematic techniques included identifying the frequency of themes and significance of what was said (Clark & Braun, 2016). Important themes that emerged during this wave of analysis included: calming, soothing and relaxing; gratitude and appreciation; emotion; distraction; accessibility/ agency/choice/autonomy; value of self; physical activity; social integration and support; built environment; social contexts and macro perspectives. I provide a detailed description of how I grouped themes in Chapter 4.
The theory-driven deductive analysis used Schulz and Northridge’s (2004) SDOH framework. Following Sunderland et al. (2015), I themed data according to the existing levels of Schulz and Northridge’s SDOH continuum including individual health and well-being; micro–interpersonal, including stressors, health behaviours and social integration and support; meso–community, including built environment and social context; and macro social factors, including rights and inequalities. 47
Ethical Considerations
The study protocol was approved by the Royal Brisbane Women’s Hospital (RBWH) Human Research Ethics Committee (HREC) (Appendix A,1) and Griffith University Human Research Ethics (Appendix A,1.2). Observation areas were signed, and information regarding the research displayed. Due to the public nature of the observations, it was not feasible to gain consent from every participant; therefore, consent was waived for the observation by the HREC Ethics Committee and Griffith University Human Ethics Committee. Further, I argue that a true reflection of how people react to the music would be altered if the observations were known.
Information sheets were available for any participant who wanted further information regarding observations (Appendix C). If after receiving information participants requested personal observation to be withdrawn, I would have discounted observations regarding that person. I collected no identifiable data in observations. Limited disclosure was unlikely to have any adverse effects on participants as they will be anonymous and unobtrusive. I took precautions to ensure observations were unobtrusive including only taking notes in between songs and at break times.
Patients and family members voices were limited in this study design and were an ethical consideration throughout the study. In-depth interviews with patients and families were not included due to multiple factors. Firstly, in-depth interviews with staff and musicians provided a birds-eye view of the phenomenon. Secondly, I used unobtrusive casual conversations during observations to provide an opportunity for patient and family narratives. Further to this, considering time limitations associated with honours projects, ethics approval for this level of inquiry exceeded deadlines. Finally, due to the exploratory nature of this study, interviewing patients was determined to be outside of the scope of this study. 48
The identity of all interview respondents will remain confidential and de-identified in all reporting. No names were recorded on interview templates or audio recordings. Participants were given information and consent forms before participating in in-depth interviews (Appendix B). Electronic data were file protected using Griffith University electronic security software. Only members of the Griffith University research team had access to the data. Electronic data was archived at a secure storage facility and retained for ten years. Information was disposed of by deleting electronic files and disposing of paper-based forms.
Minimal risks were associated with this study. One potential risk was if participants felt emotional or experience adverse effects from listening to the music performed by the Stairwell Project and needed support. This risk was minimised from being in a health care environment. Further mitigation were my skills in debrief and referral as a final year social work student. A list of appropriate referral supports was available if required by family or patients. No ethical concerns emerged while conducting this study.
Conclusion
I have offered a comprehensive explanation of the theoretical frameworks used, identifying them as Schulz and Northridge (2004), Social and Environmental Determinants of Health model and place-based theory. Both theories delineate environment, place and community as pertinent features of health and well-being. This chapter has introduced the study methodology and data collection and analysis techniques used. Additionally, I have outlined the participant groups and recruitment and selection processes. Participant groups included patients, families, staff and musicians within the oncology community at RBWH who were exposed to music performances in varying locations in the hospital. A description of these locations has been given and identified as 6A South (6AS), 5C Outpatients, 5C Patient Lounge, Oncology Walkway and the RBWH Main Entrance Hospital Foyer. I 49
identified how a narrative approach to in-depth interviews would give rich information from multiple perspectives. Data analysis included inductive and deductive techniques using the Social Determinants of Health (Schulz & Northridge, 2004). In conclusion, I outlined ethics approvals and considerations; the next chapter outlines the results of the study. 50
Chapter 4: Results
Summary
The previous chapter outlined the conceptual framework and methodology for this study. This chapter presents the study results that fitted into the individual and population health and well-being level of the SDOH model. Following this, Chapter 5 presents results mapped against micro–interpersonal, meso–community and macro–fundamental levels. There were nine themes emerged from the data grouping. Each theme section begins with an introduction, which includes a rationale for the thematic grouping, and then gives a breakdown of results. I then present a summary of the results with key examples from data. The second half of the chapter offers a comprehensive discussion of results.
Introduction
According to Schulz and Northridge (2004), individual and population health and well-being are influenced by the dynamic and interrelated nature of social processes and aspects of built environments. In total, 121 references were mapped against nine themes that emerged during analysis of individual health and well-being outcomes. Results of this study fitted neatly into the SDOH model. I refer to references as a piece of data, a sentence, statement or observation that specifically relates to an SDOH level. A source refers to where the data was gathered.
Results
The individual and population level of the SDOH framework is categorised into health and well-being outcomes. In the health outcomes sits mental health, physical health and cancer. In the well-being level are concepts of hope, despair, life satisfaction, psychological distress, happiness and disability. I merged health and well-being themes in data and they appear as: appreciation/gratitude, calming/relaxing soothing, emotion/mood, distraction, agency/autonomy, benefit from others’ happiness, connection to self/ self-reflection, value of 51
self, and participant movement. Figure 3 shows how all results of this study were mapped in Schulz and Northridge’s (2004) SDOH model. Table 1 immediately follows Figure 3, and explains the nine themes that emerged in data as well as giving a total for the number of sources and references made to each theme.52
IV. HEALTH & WELLBEING (Individual or Population Level) II. INTERMEDIATE (Meso/Community Level) III. PROXIMATE (Micro/Interpersonal Level) I. FUNDAMENTAL (Macro Level) Macrosocial Factors • New social norms—decrease stigma -greater value of people with illness • Human rights and social justice Inequalities • equal access to arts • Distribution of funds for music programs • Health equality Built Environment • less focus on T.V • sound and noise • Flow, fluidity of sound • Services – beyond therapeutic approaches? Hospitals for healing rather not only treatment • Public resources – access to art • changing atmosphere • open doors to hear music • Transforming environment Social Context • Building networks of arts-health workers • Policies—place-based arts-health programs • Holistic care • Wellbeing of staff • Community capacity—building connections and networks across diverse participant groups • New roles in arts-health • Civic participation Health and Wellbeing Outcomes • calming/soothing/relaxing effect • Distraction from pain and psychological distress, allowed for a momentary break from oncology environment • Emotion/mood—allowed for emotional experience, lightened the mood • Improved movement—circulation • Appreciation/gratitude • Generates happiness & excitement • Promoting autonomy-agency & choice • Self-reflection • “Music heals the soul” • Gratitude appreciation • Generating positive feelings watching others benefit • Enhanced value of self – Stressors • High pressure stressful work environment • Emotional context of oncology • noise pollution—of healthcare machines and environment Social Integration and Social Support • Conversation starter • Playing games with colleagues • Participating in playing or watching music • Impromptu music sessions • Provides a space for social support • Connectedness with musicians • Connectedness with others • Opportunity to offer thanks • Musicians feel they are giving back Health Behaviors • Physical activity—motivated to get out of bed to listen to music • People move to close proximity of the music for their enjoyment (health & wellbeing) Natural Environment N/A – environment is built
Figure 3. SDOH framework for live performance in an oncology setting. Adapted from “Social Determinants of Health: Implications for Environmental Health Promotion,” by A. Schulz and M. E. Northridge, 2004, Health Education & Behavior, 31, p. 45. Copyright 2004 by SAGE. 53
Table 1
NVIVO Table of Results Individual Health and Well-Being Theme
Description
Sources
References
Appreciation/Gratitude
Acts/comments of appreciation about music
12
29
Calming/Relaxing/Soothing
Individual physical and psychological outcome
12
28
Emotion/Mood
Relating to the gamut of emotions and mood typically related to live music
8
22
Distraction
When live music provided a distraction from oncology
12
21
Agency/Autonomy
Having a choice of music as an activity, and whether to participate or not
6
6
Benefit from Others’ Happiness
Positive affect associated with watching other participant groups benefit from music performances
5
6
How live music helps people connect more deeply with their inner self
4
5
Value of Self or Perceived Value
How live musicians made participants feel valued—How participants made musicians feel valued
2
3
Participant Movement
Assisting the physical health of patients
1
1