Support Care Cancer (2012) 20:687697 DOI 10.

1007/s00520-011-1104-1

ORIGINAL ARTICLE

Musics relevance for adolescents and young adults with cancer: a constructivist research approach
Clare OCallaghan & Philippa Barry & Kate Thompson

Received: 17 May 2010 / Accepted: 24 January 2011 / Published online: 11 February 2011 # Springer-Verlag 2011

Abstract Purpose Music is one of the most widely used activities amongst young people, significant in personal and group identity, motivation, physical release, and emotional support. Adolescents and young adults with cancer (AYA) require specialized care because of intensified challenges related to developmental vulnerability, treatment toxicity effects, and slower improvements in survival rates compared to other age groups. To advance effective supportive care for AYA, understanding their thoughts about music is necessary. This study examines AYAs perspectives about musics role in their lives. Methods A constructivist research approach with grounded theory design was applied. Twelve people, 15 to 25 years old, known to onTrac@PeterMac Victorian Adolescent &
C. OCallaghan Caritas Christi Hospice, St. Vincents Hospital, Melbourne, Australia C. OCallaghan Department of Medicine and Faculty of VCA & Music, The University of Melbourne, Melbourne, Australia C. OCallaghan (*) : P. Barry Social Work Department, Peter MacCallum Cancer Centre, Locked Bag 1, ABeckett St, Victoria, Australia 8006 e-mail: clare.ocallaghan@petermac.org P. Barry e-mail: pipbarry@yahoo.com.au K. Thompson onTrac@PeterMac Victorian Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer Centre, Locked Bag 1, ABeckett St, Victoria, Australia 8006 e-mail: Kate.Thompson@petermac.org

Young Adult Cancer Service, participated. Respondents completed a brief music demographic questionnaire and participated in a semi-structured interview. Qualitative inter-rater reliability was integrated. Results Participants mostly reported musics calming, supportive, and relaxing effects, which alleviated hardship associated with their cancer diagnoses. Themes encompassed: music backgrounds, changed musicking, endurance and adjustment, time with music therapists, and wisdom. Music provided supportive messages, enabled personal and shared understandings about cancers effects, and elicited helpful physical, emotional, and imagery states. Music therapy could also promote normalized and supportive connections with others. A musician, however, struggled to get music back post-treatment. Supportive musicbased strategies were recommended for other AYA and their health care providers. Conclusions Music can signify and creatively enable AYAs hope, endurance, identity development, and adjustment through cancer treatment and post-treatment phases. Health professionals are encouraged to support AYAs music-based self-care and normalized activities. Keywords Adolescents . Young adults . Oncology . Music . Music therapy . Self-care

Introduction Adolescence encompasses individuals in their teens and early 20s engaged in pubertal change and developmental tasks, including identity formation, establishing independence, and initiating occupational and philosophical choices [1]. Adolescents and young adults with cancer (AYA) are a distinct group requiring specialized care [2, 3] because of intensified

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challenges when confronting life-threatening diagnoses and required treatments [4]. They can feel loss of normalcy [5] and control, body image concerns, and increased dependency [1]. When group acceptance is essential, time with peers decreases, and treatment effects may damage self-esteem and developing identity [1]. Recently, survival rates for cancer patients aged 15 to 29 years have not improved compared to other age groups [6]. AYA also generally find treatment toxicities more difficult [7]. Fortunately, specialized care programmes for AYA are developing internationally [8]. Amidst the scant research examining psychosocial support for AYA [4], interventions which include socialization opportunities are advocated [8, 9]. Adolescents experienced support, fun, reduced isolation, comfort, and connectedness when sharing normal activities in groups with peers [10]. Music is recommended in all adolescent and young adult cancer services [1], however, there is scant examination of its potential role. Two people aged 30 and 24 years who had cancer reported that hard and heavy metal music purged their anger and enabled ideal self expression [11]. Music therapy1 methods improved adolescent cancer patients selfesteem [13] and stress management [14], and therapeutic music video (TMV) interventions during stem cell transplant produced favourable effects in AYAs spirituality, confidence/ mastery, hope, and self-transcendence [15]. AYA parents were also grateful for TMVs perceived benefits [16]. Music has a pivotal role in young peoples development and coping [1721]. To advance appropriate provision of supportive care for AYA, and strengthen their capacity for self-care, it is important to examine their thoughts about music. Music in adolescent and young adult lives2 Music listening is often the most pleasurable and popular activity amongst adolescents [21]. American teenagers listen and watch up to 56.6 h of music a week [22]. It eases stressors and supports in their search for individual and group identity [18]. Lyrical messages provide promise of relief from difficulties and meaning when one is unable to identify with parental values [19]. When struggling with adult beliefs, young people may seek role models in musicians lives [22]. Music preferences can become a mark of personal identity [23] or badge [24]. When searching for group identity, bonds are formed with admired people: listening to the same music externalizes that bond [23]. Even when adolescents share little common ground, talking about music can enable communicaMusic therapy is the planned and creative use of music to attain and maintain health and well-being. It is an allied health profession provided in Australia and over 40 countries [12]. 2 This section is informed by literature discussing adolescents and youths music usage but is regarded as applicable to the adolescent and young adult group discussed in this paper
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tion [25]. Music making also provides opportunities for young people to distance themselves from unappealing aspects of life, envisage new ways of being, and explore new avenues for education and personal development [26]. Adolescents seek music to fulfil needs including passing time, reducing tension, and controlling mood [18]. Music alters mood through activating neural regions and connections involving arousal, pleasure, opioid transmission, and dopamine production, more extensive than those elicited by language [23]. Consumerism and the media also provide youth with resources to reject traditional class base identities and reflexively construct new collective subcultural identities [26]. Rather than passively consume someone elses assumption of musics textual meaning, adolescents may actively construct their own meaning through an ongoing process of interpretation and accommodation [18]. Research on musics impact on young people mostly comprises correlational studies between behavioural health and music exposure. Music choices are likely influenced by personal predispositions and lifestyle preferences and may play a supportive but not necessarily causal role in pathogenesis [27]. Twelve interviews with 1523-year-old people from Buffalo, New York revealed respondents varied music preferences and involvement. Music provided respondents with idols and a focus for emotions, elicited altered mood and empowerment, supported depressed mood, or motivated movement [28]. Adults with cancer may use music for self-care, including for sleep difficulties [29], coping [30], and spiritual needs [31]. Music experienced by children with cancer can facilitate resilience and normality [32]. The authors often observed music used by AYA at Peter MacCallum Cancer Centre and decided to examine musics relevance for this group. Relevance means: how is music used and what does it offer? This hospital includes onTrac@PeterMac, which is a specialized programme for patients aged 15 to 25 years living in Victoria, Australia, because behaviours and thought patterns related to this developmental stage can seriously affect their care [4]. Increased understanding about what AYA use for personal support is important for health professionals endeavouring to improve their lives.

Participants and methods Research approach, design, setting, recruitment, and sampling The research design was inspired by grounded theory [33] which is a constructivist research tool [34]. Approval was received from Human Research and Peter MacCallum Cancer Centres Ethics Committee. People with life-

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threatening cancer diagnoses aged 15 to 25 years and known to onTrac@PeterMac were eligible. Exclusion criteria included psychiatric problems, marked cognitive impairment, clinically deaf, marked physical discomfort or distress, and poor English language skills. Theoretical sampling proceeded; invitations were extended to those thought able to share varied stories about musics relevance, including positive and negative effects. Interviews were conducted from October 2008 to August 2009. Participants characteristics Twenty-two people were invited to participate and 12 gave consent. Reasons for refusal included other priorities, lack of time, and felt uncomfortable. Three agreed but did not follow up, changed their mind, or had an acute medical episode. Interviews were held in a cancer hospital (eight), participants homes (two), or cafs (two). Background data was obtained during the interviews through a brief structured, author-created music demographic questionnaire (see Table 1 for description of participants). Mean interview times were 57 min (range, 15 to 135 min). Procedure The AYAs participated in an audio-recorded semi-structured interview which included questions about music preferences, music usage and effects before and since diagnosis, hospital sounds, whether music has a spiritual connection, music therapy experiences, and other questions to extend and clarify novel descriptions about music. Paraphrasing was included to corroborate the interviewers interpretations.
Table 1 AYA participants demographic and music background data AYA participants (n =12) Mean age Male:female Citya:country dwellers Diagnoses

Data analysis Thematic analysis was applied to transcribed interviews, assisted by data management software [35]. Three phases of analysis proceeded iteratively: predominantly inductive coding, comparable codes and their text were condensed into representative categories, and comparable categories were condensed into themes. The first author conducted interviews, transcriptions, and initial data analysis. Remaining authors provided qualitative inter-rater reliability [36] through reading the transcripts and analysis, and either supporting or extending the analysis.

Results Sampling ceased when the findings were regarded to provide substantial insight into musics relevance for AYA and valuable recommendations for improving their support through music. Given diverse roles music assumes in peoples lives, it was believed that further interviews could slightly alter the thematic findings, but eventually, grounded theory researchers acknowledge that findings are developed enough for the studys purpose and regard what is not included as a limitation [33]. Analysis yielded 752 codes, 13 categories, and five themes. Textual coding is illustrated in Table 2. Table 3 presents categories and text examples, that is, AYAs statements which informed the categories (Examples of codes that informed categories are also in Table 1). Comparable categories were placed into four groups,

a b

Population of >300,000

Shifted from few times a week to everyday

Completed treatment Cancer related hearing deficit Had played musical instrument Still played/sang/danced Always listened to music everyday Always listened to music few times a week Listened to more music since diagnosis Where listen to music

21 years (SD 2.7; range 1624) 5:7 8:4 Sarcomas (5), solid organ tumours (4), leukaemia (1), melanoma (1), pineal germinoma (1), metastatic disease (4) 4 (2 and 4 months, 2 and 3 years earlier) 3 6 4 11 1 1b Hospital (11), commuting (11), home (11), work (7), live music venues (6), other (2)

690 Table 2 Illustration of textual coding and category development (categories listed in Table 3) Text 24-year-old male (H): A lot of songs like I wrote I now wouldnt perform or sing because maybe I dont feel so strongly about it. Like when I was going through (treatment) I was so (soft roar) so Id put it down, you know, but definitely a lot of songs, you know I dont like to sing because it brings back all those memories and stuff so, some of them anyway. Interviewer (I): Yeh, and is it ok talking about them? H: Oh yeh. I: Ok, because Im fascinated in them. H: Yeh, that would be cool. I: Yeh, what kind of songs were you writing ? H: one of the songs was called Strangers Guarantee, things like that you know where I felt I put all my life in some stranger s guarantee. Some dude says, Well give you this and well give you that and we give you this and youll be alright, so it was kind of like just having no control, you know. So a lot of my songs were about having no control and how things have changed, and ones called Time has Changed from all of these sort of happy things I was not attacking people but, you know, let people know that, You all have control. Codes

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Wouldn't sing songs composed during worst of treatment now as brings back all/some memories and stuff (informed category C2)

Cool to talk about composed songs during illness but not sing them (informed category B3)

Composed song lyrics about losing control, telling others they have control, needing to listen to Strangers' Guarantee, and Time's Changed from being happy (informed category C1)

denoted by AD in Table 2, and another group, denoted by E. Group E included two categories pertaining to the AYAs music-based recommendations for cancer service providers and other AYA. These categories are respectively elaborated in Tables 4 and 5. The five category groups were condensed into five corresponding themes, as follows:

Theme B: AYAs normal development alongside cancers biopsychosocial impact changes their musicking [37] mildly to profoundly Cancers physical, emotional, financial, and environmental consequences could change where, how, when, with whom, and what AYA musicked. Musicking means to take part in music through performing, listening, rehearsing, practicing, composing, dancing [37], and (for this study) imagery. One 24-year-old male said that while he felt too unwell to write songs for 1.5 years after diagnosis, he still played covers (other peoples music) and took lessons through YouTube. An 18-year-old male, who had neural involvement, also enrolled in school music after realizing that mathematics was a challenge. Treatment sometimes had sensory effects, including increased tension when hearing metal music. Weakness, fatigue, treatment times, and reduced mobility curtailed attendance at music venues; however, when too tired and unable to concentrate, participants often still listened to music because it required less effort. Financial disadvantage through cancer, however, could adversely affect potentially supportive access to favourite music recordings and events. Some also said that family and friends remained connected through giving CDs or singing to them (see category C1, Table 2) Participants were often more particular about music choices. A 23.2-year-old participant listened to slow and calming music during treatment but used techno and bassey pulsating music to motivate regaining fitness post-treatment. A 21-year-old dancer was also attracted to

Theme A: AYAs music backgrounds affect their musical experiences and reflections about their lived lives

Music was an important part of the AYA participants lives before their diagnoses. Their diverse preferences included classical, meditation, ballady rock, and death metal, and apparently arose through chance exposure. Participants tended to listen for one or two of: singers sounds, instrumental sounds, rhythms, and lyrics. While some preferred new music, others preferred longstanding favourites. Most brought personal or borrowed iPods into hospital and one brought his laptop recording studio. They acquired music through the radio, CDs, the internet, and paid TV channels. Musics general effects were described as fun, loved, possibly like ecstasy (the drug), and contradictory: even though you're not sad, theres that kind of sadness feeling. Five also said that music had a spiritual association, including one 18-year-old male who stated that musics power supported his faith that he would get through his illness.

Support Care Cancer (2012) 20:687697 Table 3 Textual examples (italics) informing categories depicting musics relevance for AYA Categoriesa Text

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A1. Reflections about one's context

A2. One's music background, including exposure during upbringing, available music technology, relationships involving music, and lessons, can be the foundation for music usage and associated support during treatment and recovery

A3. Spiritual issues may or may not be considered in relation to music and reflecting about music can be hard

B1. Cancer changes where, how, when, and what music adolescents and young adults listen to, share with others, compose, play, and dance to, because of its physical, emotional, social, financial, and environmental consequences, yet the changes are often adaptive

B2. While patient musicians and dancers often compose, dance, or play instruments less when symptomatic and during treatment, they may also creatively adapt their expressions

B3. Upon diagnosis and recovery, music preferences may or may not alter, but one may experience or listen to music differently, or change stylistic and performer preferences and composition styles, possibly due to the cancer and/or "normal" development

C1. Listening to, singing and/or writing (appropriate) songs can convey or elicit supportive messages to oneself and personal experiences to others

Male, 24 years old Ive lost everything. The mental battle was harder . Female, 23.2 years old What Ive experienced glad I dont think Id be the person I am. Male, 16 years old Music for me, it just makes me calmer more suited to life . Male, 18 years old Before I was just trying to impress people (when performing music) but now (since cancer) its different when you know youve touched people thats the most amazing feeling you can get from somebody. Male, 23 years old I just bought an iPod specifically for hospital stays . Back home I was listening to the radio and through my computer mainly and at one point music really did calm me down they gave me the diagnosis and at first they didnt know what it was. Male, 23 years old Feeling of moving to a higher plane or being in a different kind of situation to where you are only when I hear particularly good music. Female, 24 years old No, no. (when asked if music had a spiritual association) Male, 18 years old Another song I wrote was called, In the long run about like looking into the future what will happen in the long run. Male, 24 years old I just jump on the guitar and write a song about feeling down and it just goes away kind of thing. I would always have my guitar in hospital. Female, 24 years old I was listening to one guy vomiting next door and I was, yeh, Put it (ipod) on and try not to think about it much. Male, 24 years old I wasnt playing music because I was too tired. I started having guitar lessons because I wanted to get back in it but I had to stop in the end because I would be on the couch and couldnt get there. Female, 21 years old Im doing dancing at the moment, more slower kind of songs that have a little bit more meaning the long stretched out kind of movement, kind of feels empowering. Female, 23.8 years old When I was feeling sick or just really depressed there were times when in my head I would just pretend that Im singing it all the emotion. I would have the energy to sing get the message out. Female, 23.2 years old I havent changed much of what I listen to but Ive started to listen more to the meanings of the songs. Female, 19 years old I find that I cry a lot to that song (now) which is really odd, because its a really fast pace I really love it. He sings about like the waves crashing down, the tears going down the face, and I find thats really, I dont know. Its a good song to cry to. Female, 23.2 years old (Musics) one of my friends because I spend a lot of time alone and

692 Table 3 (continued) Categoriesa Text Ive needed support. Female, 23.8 years old

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Its like as if Id talked to the cancer (music) just makes you that strong. Theres a song, Mistaken Identity, and shes like, And leave this sick girl behind, and in my head, even when I was sick, I was listening and I was thinking, One day I am going to leave this sick girl behind and I am going to be strong again. Female, 17 years old I did write a song just after I was diagnosed (about) being able to see the light at the end of the tunnel . It does finish. C2. Upon diagnosis, treatment, and scans, music usually helps through eliciting emotional, physical, and imagery responses, and reexperiencing music used in treatment post-treatment maybe disturbing or not bad Male, 19 years old I generally get (radio station) when Im in the scanners just relaxes makes it go quicker Female, 23.8 years old When I had nothing else, I had my iPod because when I was in hospital and everyone went home, and it was just quiet, and it was my, like, escape. Id picture me when I go to the beach dancing. When Im listening to those songs (from around diagnosis) sometimes I cope with it better than others. Male, 24 years old (During chemotherapy) Id pen it and Id sing it, you know, it was kind of my way of speaking it out its like a weight off your shoulders (and) when I used to play, my book would be covered with tears . Male, 23 years old It might be the end but you know theres still a lot of good stuff going on. , its definitely comforting with the treatment knowing that youve got music there if I die this is still good now. You realize that you can enjoy stuff and at that moment its good. Female, 17 years old I felt so disgusting and sick I just wanted to like, I didnt want to die, but I just wanted to escape and um Id listen to classical music and visualize being in another place and that kind of helped for a bit. Male, 18 years old I found it really hard with my friends explaining like how I felt so um I asked the teachers if I could play in (school) Assembly and I wrote a song about how I felt and played it to everyone and its basically since that day everything went upwards for me so yeh I was sick but people saw the person who I was. Female, 17 years old I was really sick (during treatment) and I didnt have the energy to kind of get up and play, and I felt like my voice changed, and once you kind of stopped playing the piano you kind of lose your ability to play as well as you did Its just kind of really hard to get going now I still want music in my life I just, I dont know how to get it back. Male, 24 years old The music brought us together we decided to write a song but our first 15, 20 min was all of us just talking, and then wed go, OK, now we should do our bit (music) now, because it kind of took the whole therapy stigma away from it it was wicked it was so much fun. 23.8-year-old female I explained the song (written in music therapy group) to everyone, it was like about 23, every single word is how I feel Ive thanked them like giving (them) this song I feel closure.

C3. Musics role in identity development and adjustment when adolescents and young adults are in the limbo of cancer treatment and recovery.

D1. A music therapy group connected people without therapy stigma and felt normal and fun, and song writing enabled closure.

Support Care Cancer (2012) 20:687697 Table 3 (continued) Categoriesa D2. Individual music therapy, while not desired by everyone, can be fun, loved, and promote normality when offered by a flexible, conversational, and friendly music therapist. Text

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Male, 19 years old (Music therapy) was mucking around with instruments . writing a song and back playing the song and having a bit of a sing along , that was really good brighten your day up it was relaxing. Male, 18 years old (Time with music therapist was) amazing it wasnt just the music, it was like the talking and just the whole being normal with someone.

The four category groups informed four themes, A, B, C, D as listed in the text

slower and more meaningful songs during treatment because it was easier for expressing movements and feelings. She also listened to more music which inspired mimicked dancing in her head, making her feel calm and happy. A 23.8-year-old participant speculated whether her changed musicking reflected both her cancer response and normal development. While preferring pop and boy bands before diagnosis, during her 12 months of treatment, she mainly listened and danced to ex-cancer patient female singers, including Olivia Newton-John. While inspired by their healthy recovery, she was too scared to listen to them post-treatment. Rather, she listened to Britney Spears and more radio, saying, It's back to fun, happy, not so emotional draining. While most participants said that their music preferences hadnt altered, many became more lyrically focused. One described how a song that made her cry (see category B3, Table 2) was the only thing that helped her feel better when sad.

Theme C: musicking signifies and promotes AYAs' endurance and identity adjustment through treatment and recovery, expressed in cognitive, emotional, physical, and imagery responses Many changes in the AYAs musicking helped them to endure cancer treatment and post-treatment phases through conveying messages to themselves, conveying messages to others, dealing with emotional reactions, and eliciting helpful imagined and physical states. Identifying with former cancer patient singers gave the 23.8-year-old participant a fighting spirit. She felt in good company, understood, and empowered by a shared strength. While feeling that friends did not understand, these performers did. Identification with song lyrics also offered hope through imagining that she would be well again (see category C1, Table 2).

Lyrics also helped participants to express and understand their worlds. A 23.2-year-old female said that songs articulated words that were hard to express and that she listened to her partners preferred music to try and understand his sustained support. One 19-year-old female said that she loved the band, Fakers, chaotic singing and recited some lyrics, Im in a state of wonder where all of the terrors breaking. Give me a happy ending [38]. She added, I do feel I need a happy ending. Lyrics could also challenge. The Faker fan said that her favourite song, Kids, please try harder [39] could be too emotional and make her cry when she felt she could not be strong enough. Music also enabled three songwriters to create messages for self-support (see Table 3). Extremely varied emotions were elicited by different music genres. Participants reported that music brought them hope, joy, relaxation, comfort, courage, tension, inspiration, reduced aloneness, centeredness, regret, sadness, weakness, and/or courage. People repeatedly said that preferred music calmed and relaxed. It also supported when frustrated. Music experienced during cancer treatment acquired either distressing or not bad associations post-treatment. There was no relationship between types of music used and accompanying emotional states: both classical and death metal music calmed and what calmed one person could stress another. A 23-year-old male, who liked electronic and alternative music, described how music offered comfort and joy even if death was an imminent possibility (see category C2, Table 2). Dancing was also important, releasing energy and bringing happiness and empowerment to one 21-year-old participant. She created and performed movements for the song, In My Dreams [40], for her dance class and, for the first time, felt understood by them, as they asked questions about her illness afterwards. Two participants also coped with diagnostic scans through slightly moving body parts away from scan beams to their preferred background music. Music was also used to support sleep in hospital and at home, relieve symptoms, including nausea and pain, or to

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motivate getting out of bed. Music helped through distraction, reminiscence, escapism, eliciting images, enabling blankness and zoning out, and quickening or monitoring time during scans. Imagining music could have similar effects to hearing and singing it, even when music was not playing (see category B2, Table 2). A participant tried to cope with the chemotherapy infusion pump beeps through imagining improvised music on top of the static rhythms. A musician also said that when too ill to play his guitar, he imagined playing and singing. Music usage could also reflect AYAs integration of cancers effects into their identity adjustment and development. One 18-year-old participant described how his musical band members formed another group without him after his diagnosis. While music signified this loss, it also reconnected him with his friends and band member identity when he invited them to play music together following treatment. Three respondents reported that after treatment, music listening, playing, composing, and dancing were motivating and pivotal for self-expression, communication, or the return of normalcy. One 17-yearold woman, however, reflected on the difficulty of maintaining her musicianship. She felt that the cancer diagnosis affected her selection for a desired part in a musical and, months after treatment had finished, was finding it hard to return to her musical self (see category C3, Table 2).

stigma because of its music focus (see category D1, Table 2). Two said that while they had not received music therapy, a music therapist had given them relaxation and symptom reduction strategies. Another participant, who had spent time with two music therapists, also said that one therapist was more helpful than the other because she allowed him to feel normal through friendly conversations and spontaneous and flexible sessions, rather than predetermined times which made him feel more like a cancer patient. Song writing was also welcomed by three participants (see categories D1 and D2, Table 2).

Theme E: wisdom: sound and music-based support strategies are recommended for health care providers and other AYA which include flexibility and choice Music-based supports recommended by the AYA participants for health care providers and other AYA are listed in Tables 4 and 5.

Discussion In this qualitative research, interpretive rigour requirements [36] were addressed through inter-rater reliability, use of verification in interviews, and inclusion of negative cases, that is, descriptions of when specific music was not helpful. One could therefore conceptually generalize [36] from the findings that for many AYA, music is an important mode of self-care, akin to its importance for healthy young people [20, 23, 28]. Music therapy may also be helpful, especially when it promotes AYAs normality or expression through song writing, as found

Theme D: some AYA find that time with flexible music therapists promotes normality, fun, and/or support Music therapy was an important activity for some but not all participants. A participant said that a loved and friendly music therapy group did not have the therapy

Table 4 Category E1: AYAs recommendations for music-based supports that health carers may flexibly offer other AYA* Offer choice of music (or radio) and relaxation and meditation CDs for use in wards and during scans, including iPods, iTune libraries, music DVDs, and paid music TV channels. Music libraries could be available for use in the hospital and home, by both patients and those supporting them. iPods need to be available for loan as some people cannot afford them. Offer a music computer programme which can recommend music after listeners give their preferences. Offer varying types of meditation and relaxation (including breathing) skills education. Offer loans of instruments, e.g., drum kits and guitars (enabling patients to play music on the wards and homes), amplified headphones, and drumming earmuffs. Provide single (bed)rooms where musicians can play. Be thoughtful about what amusements are located in AYA space (e.g., no inappropriate childrens performers). Remove or alter annoying infusion pump beeps and frightening emergency code sounds in hospitals. Offer individual and group music therapy. Consider strategies to financially support patients music usage, e.g., purchasing music equipment, song downloads, concert tickets, music lessons, and transport costs to see favourite bands (which, one participant said, would be preferable to a free wig). Play music for 2 h a day on a ward public announcement system, including live music in a place where patients can go to listen if they feel like it. Suggestions included Chuck Berry (because the wards were sombre and horrible), live solo classical violin, or relaxing guitar music. *Strategies that some people think are helpful may not be viewed as helpful by others

Support Care Cancer (2012) 20:687697 Table 5 Category E2: AYAs music-based suggestions for other AYAs self-care

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Think about trying out different music to listen to, and take time to listen to it, to see what you find helpful, as it will be different for different people. Perhaps music with good memories that one hasnt listened to in a while could help with distraction. When your eyes are closed, you may find that you absorb the music more, increasing its power. To prevent unwelcome intrusions (e.g., older people who question and comment about someone so young having cancer), make the earphones on your head obvious, even if only pretending to listen. Consider using your own music while having massages. Musics rhythms do not have to match the massage movements to have a relaxing effect. Consider watching music with film clips. Always have your iPod with you and use it for zoning out, blocking out hospital sounds, and sleep. Try creating your own imagery for coping, with or without music, and perhaps try to visualize being in a different place (One persons nausea was helped through imaging that she was shooting floating purple spiky balls with spaceship rings, which would explode. She heard the imaginary explosions. When listening to Vivaldi she was also able to soar across green pastures). Have fun with hospital equipment when able and appropriate (For example, while one participant was hooked up to a heart rate monitor and waiting stem cell collection, she imagined singing music and her friend guessed the music she was imagining by looking at her heart rate changes). When needing music for scans like MRIs, which normally make you move and you are not allowed to, you may get the same physiological sensation by gently grinding your teeth back to front (and) side to side, just a little. Even if not a dancer, listen to music and move to how the music makes you feel, if it makes you want to roll on the floor or jump or anything like it might release a bit of energy, make you feel a bit happy or something like that. Consider music therapy.

elsewhere [13, 14]. As with other young people, AYAs diverse preferences apparently arose through chance exposure [23]. Musics capacity to alleviate young peoples isolation [1] helped these AYAs to develop resilience, used for personally connecting with family and friends, and symbolically connecting with resonating lyrics and musical elements. Pop stars affected by cancer could help AYA feel understood. When singers make themselves vulnerable to their audience, listeners can be vulnerable to them, connected to a larger truth about the meaning of being alive and human [23]. The varied moods elicited by music could support the AYAs endurance through treatment and recovery. Music calmed, inspired hope for a healthy post-treatment life, or purged, as found in other interviews with cancer patients [11]. While preferred music is associated with relaxation [41], it could also support these AYAs when frustrated. Music, like the psychotherapeutic process, provides a flexible and creative container; able to hold, express and console, to carry one to breathless heights and darkest depths, and to offer possibilities of increased integration and freedom [42]. Musics therapeutic qualities can be especially profound when touching apparently paradoxical feelings, for example, the participant who felt better when listening to a song which elicited tears. Music has a remarkable capacity to both elicit grief and provide solace, even doing so simultaneously. Tears may flow during the music, there is a sensation

of coming apart, and then re-grouping, regaining a sense of calm and organization as the music ends. (Such) mourning and re-grouping are essential to growth. [42] Movement and dance were also used to deal with arduous scans and difficult emotions. Through such physical responses, one can express feelings and attitudes, and feel held, contained, nurtured, and discover oneself [43]. Similarly, some participants reported that when too unwell to move, they imagined dancing, playing guitar, or singing. Movement imagery activates motor neurons in the same cortical location as those activated when performing the movement [44], thereby substantiating these therapeutic modes of self-care. Musics important role in supporting young peoples identity development [18] through their cancer experience was also evident. Music often helped participants to integrate the rare, intrusive, and harsh effects of cancer into their adjusting identity, including as a reformed band member, or to accompany exercise when trying to regain a fit and normal life. AYAs quest for a normal life [10] was also evident in the finding that a flexible and friendly music therapist can provide non-stigmatizing support for AYA which promotes AYAs creativity, abilities, normality, and fun. Limitations and recommendations This research illuminates musics significance for AYAs who had received or were having cancer treatment with a curative intent in south-eastern Australia. Stories from AYA

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Support Care Cancer (2012) 20:687697 Acknowledgements The authors thank the 12 people who participated in this study and Annette Baron for the helpful feedback. Dr. Clare OCallaghans contribution was enabled through a National Health and Medical Research Council of Australia Post Doctoral Fellowship (Palliative Care, 20082009). Conflict of interest and statement about data The authors had no conflict of interest in this study. They all had full control, that is, access to all primary data, and agree to allow the Journal to review the data if requested.

receiving end-of-life care and/or living in different regions would broaden understanding of musics potentially supportive role when affected by cancer. The finding that AYA sometimes described involvement with music therapists while not receiving music therapy warrants further examination to clarify local music therapy practices. Perhaps some therapists are not engaging AYA through formal treatment times and assessments but, rather, developing approaches to establish therapeutic relationships perceived as normalizing and less stigmatizing. Adolescents with cancer are supported when carers focus on what is important to them [45]. Professionals could inquire about AYAs musical lives when assessing their resilience and vulnerability to assist its usage when regarded as a source of strength and to invite psychotherapeutic work, including music therapy, when musicking is a source of disappointment. Cancer service providers may also further consider how normalized music-based individual and social activities, including those in Table 4, could be offered to AYA.

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Conclusion In this study, many AYA indicated their lived limbo characterized by uncertainties: treatment and illness effects, peer responses, job and education prospects, etc. Even when the illness was not active, participants carried physical, emotional, mental, and social effects which needed to be integrated into an adjusted identity encompassing their cancer experience. Music was a supportive modality which enabled their dreaming, thoughts to focus elsewhere, and expressions of feelings and individuality. These descriptors also signify what gives adolescents with cancer hope [45]. Music remained a reliable but occasionally confronting friend: always there to reach out to, hear, imagine, play, or turn off. Music supported, validated, inspired, and empowered, and accompanied joy, cruising, calmness, and sadness. It altered mood, uplifted, and occasionally altered symptoms. Music was used to help others understand, for personal understanding, to enable ones feeling of being heard, and when elusive, music was there for the challenge of getting back. Music also signified identity development and adjustment, as the young people endured, and creatively and inspiringly dealt with their illnesses. For some, music therapy was also a normalized form of expression, support, and companionship. It is imperative that health carers are aware of and support musics accompaniment in AYAs lives. I dont think that I could have gotten through this and, you know, be fit and healthy without music. (female, 23.2 years old)

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