The Effects of Original Songwriting in Music Therapy Sessions On

Te Florida State University
DigiNole Commons
Electronic Teses, Treatises and Dissertations Te Graduate School
7-9-2012
Te Efects Of Original Songwriting In Music
Terapy Sessions On Te Hospice Experience And
Bereavement Process Of Patients And Teir
Families
Jill Christine Anderson
Te Florida State University
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Recommended Citation
Anderson, Jill Christine, "Te Efects Of Original Songwriting In Music Terapy Sessions On Te Hospice Experience And
Bereavement Process Of Patients And Teir Families" (2012). Electronic Teses, Treatises and Dissertations. Paper 4692.
THE FLORIDA STATE UNIVERSITY
COLLEGE OF MUSIC
THE EFFECTS OF ORIGINAL SONGWRITING IN MUSIC THERAPY
SESSIONS ON THE HOSPICE EXPERIENCE AND BEREAVEMENT
PROCESS OF PATIENTS AND THEIR FAMILIES
By
JILL C. ANDERSON
A Thesis submitted to the
College of Music
in partial fulfillment of the
requirements for the degree of
Master of Music
Degree Awarded:
Summer Semester, 2012
Jill C. Anderson defended this thesis on June 08, 2012.
The members of the supervisory committee were:
Jayne Standley
Professor Directing Thesis
Alice-Ann Darrow
Committee Member
Dianne Gregory
Committee Member

The Graduate School has verified and approved the above-names committee members, and
certifies that the thesis has been approved in accordance with university requirements.
ii
ACKNOWLEDGEMENTS
Many thanks are due to all the professors, family, and friends who have helped and supported me
throughout this undertaking. I truly appreciate the knowledge, time, advice, caring, and patience
I have received from everyone along the way. Thank you.
To the hospice that helped me with this study, and the family members who contributed their
insights and shared their experiences with me, I am very grateful. Your stories were touching
and heartfelt, and your giving natures a blessing.
Jen, without you none of this would have been possible. You’re “the bell ringer,” “an angel sent
from God,” “a generous spirit,” “a beautiful person,” and a rock star! Thank you so very much
for all that you do.
iii
TABLE OF CONTENTS


................................................................................................................................ List of Tables v

........................................................................................................................................ Abstract vi

...................................................................................... I. Introduction and Review of Literature 1
............................................................ Music Therapy Outcomes in the Hospice Setting 1
........................................................................................ Songwriting in Music Therapy 3
........................................................................................... Caregivers and Bereavement 10
..................................................................................................................................... II. Method 15
....................................................................................................................... Participants 15
.............................................................................................................................. Design 16
.......................................................................................................................... Procedure 16
............................................................................................................................ Measure 17

.................................................................................................................................... III. Results 18
................................................................................................................. Participant One 18
................................................................................................................ Participant Two 19
.............................................................................................................. Participant Three 21
................................................................................................................ Participant Four 23
................................................................................................................ Participant Five 24
.................................................................................................................. Participant Six 26
.............................................................................................................. Participant Seven 27
.............................................................................................................. Participant Eight 29
......................................................................................................... Summary of Results 31
.............................................................................................................................. IV. Discussion 39
............................................ Limitations of Study and Implications for Future Research 40
....................................................................................................................... Conclusion 42
.............................................................................................................................. APPENDICES 43
A. .................................................................................................... .. Interview Questions 43
B. ............................................................. .. Human Subjects Committee Approval Letter 45
C. .............................................................................................. Participant Consent Form 47
............................................................................................................................. REFERENCES 50
....................................................................................................... BIOGRAPHICAL SKETCH 55
iv
LIST OF TABLES
......................................................................................... Table One: Participant Demographics 15
.................... Table Two: Session Attendance, Use of Song at Funerals, and Recommendations 31
................................................................................ Table Three: First Mention of Songwriting 32
............................................. Table Four: Time of Death Compared to Ability to Listen to Song 33
................................................................ Table Five: Themes in Perceptions of Music Therapy 34
.................................................................. Table Six: Themes in Perceptions about Songwriting 35
......................................................................... Table Seven: Themes in Perceptions of Hospice 36
.......................................................................................... Table Eight: Themes in Bereavement 37
v
ABSTRACT
The purpose of this study was to examine the effects that music therapy, and songwriting
in particular, have on the family members of hospice patients. Participants (N=8) were chosen
from an available group of families who experienced songwriting in hospice care, whether the
patient wrote all or part of a song, or the family wrote a song about the patient. Individual
interviews were conducted with each participant, and each participant answered a series of
questions regarding their hospice experience, their perception of their loved one’s experience,
their bereavement, and their experience with music therapy. Results showed that families found
hospice overall to be a very positive experience, and that music therapy played a large role in all
their perceptions of hospice care. All participants initiated discussion of music therapy and their
family’s song early in the interview, and all had many positive things to say about the music
therapist, the song, and the meaning the song had for them and their family. In the majority of
cases, the song written in music therapy was played at the memorial or funeral service. Other
common themes noted were that for many, the song sent a message, embodied their loved one, or
gave their loved one a sense of purpose. Many of the participants knew nothing or little of music
therapy prior to their experience in hospice, and they all found it to be rewarding, and much
more involved than they expected. Many of the participants still listen to the song, although a
few indicated that it was difficult for them or that they could not listen to it yet. However, they
all said that the song has a special meaning for them.
vi
CHAPTER ONE
INTRODUCTION AND REVIEW OF LITERATURE
Music Therapy Outcomes in the Hospice Setting
Music therapy as an element of hospice care is a growing phenomenon because so many
studies have found benefits for both patients and families. Krout reviewed a large number of
hospice-related studies and found many possible positive outcomes for patients, including
expression of feelings, relaxation, decreased anxiety and pain, improved communication,
spiritual support, decreased nausea, and life-review facilitation, among others (Krout, 2000).
Clements-Cortés (2004) cited several case examples of patients who were able to find ways to
express their thoughts, fears, and emotions through music therapy in a palliative care setting.
Some of the goals for these patients included decreasing isolation and depression, increasing
communication and self expression, and increasing reminiscence and relaxation, all of which
appeared to be met during their sessions. In another series of vignettes, Sheridan and McFerran
(2004) found that in pediatric palliative care, using music therapy sessions to give children
choices and control during their care increased their quality of life. Methods used varied from
child to child, but included stories accompanying music, songwriting, and the child controlling
the therapist’s movements through musical motifs. Other treatment goals were reported by
Hilliard (2003), such as decreasing worry, loneliness, anger, pain, nausea, and shortness of
breath. In Hilliard’s study, the Hospice Quality of Life Index- Revised was implemented to have
patients self-report their quality of life at the end of music therapy visits. With 80 participants
divided into experimental and control groups, Hilliard found that those who received music
therapy reported significantly higher quality of life, and that their quality of life continued to
increase with more music therapy sessions. Conversely, those in the control group reported
lower quality of life, and their scores decreased over time. In another study by Hilliard in 2004,
it was found that nursing home patients in hospice care who received music therapy services
lived significantly longer on hospice than those who did not experience music therapy, and that
music therapists provided support for physiological, cognitive, emotional, social, case
management, and spiritual needs. Additionally, participants received significantly more visits
1
from music therapists than they did social workers, and the visits were also longer. Hilliard
hypothesized that it was “possible that music therapy for terminally ill nursing home residents
enhances quality of life such that people are able to sustain longer durations of life on the
hospice program with music therapy” (Hilliard, 2004, p. 276). Hilliard touched on the aspect of
spirituality, but in a 2007 article, Wlodarczyk examined the link between music therapy sessions
and feelings of spirituality in ten hospice patients. By using her participants as their own control
in an ABAB design, Wlodarczyk determined that on days that patients received music therapy,
their spiritual well-being scores increased significantly. Even in a pilot study of ten Japanese
hospice patients with cancer, quality of life was increased through music therapy sessions, which
were performed in small groups according to Japanese customs and cultural preferences. Study
results showed decreased anxiety and depression, increased excitement, and decreased stress as
measured by salivary cortisol levels and a self-report Mood Inventory (Nakayama, Kikuta, &
Takeda, 2009).
Quality of life was also increased for patients in a single session through improved pain
control, physical comfort, and relaxation in a study by Krout (2001). His study used patient self-
report measures and observer measures to calculate participants’ state before and after a single
music therapy session and found significant improvements for all three variables using both
measures. As in Hilliard’s 2004 study, the interventions used by the music therapists varied from
patient to patient, but Krout reported similar goals of increasing interactions and control,
providing support and comfort, improving relaxation and life review, and providing opportunities
for spiritual discussion and expression of feelings. In a 1999 article by Starr, three case studies
are presented as anecdotal evidence of music therapy’s power to effect those on hospice care. In
one case, an older patient with dementia was able to communicate emotions to her family
through song, and in another, a young boy in a coma responded to a question at the end of a
music therapy session, to the delight and surprise of his family and doctors. In the third case, a
patient with end stage cancer found some relief from her pain through singing. Despite all these
findings, however, there is little mention in these studies of families’ reactions to this increased
quality and length of life. Hospice and palliative care music therapists have many tools at their
disposal in the treatment of their patients, but one of particular interest is that of songwriting.
2
Songwriting in Music Therapy
The use of songwriting in music therapy has been well documented. Research studies
have been completed in a variety of music therapy settings, including psychiatric, medical,
rehabilitation, substance abuse, and hospice and palliative care. Researchers have found
songwriting interventions can help clients to express emotion, vent frustrations, tell their story,
decrease anxiety, exercise choice and control, improve mood, cope with grief and trauma, and
reflect upon themselves, among others (Baker, Kennelly, & Tamplin, 2005a, 2005b; Baker,
Wigram, Stott, & McFerran, 2008; Cordobés,1997; Dalton & Krout, 2005; Jones, 2005; Kooij,
2009; Mayers, 1995; O’Callaghan, 1996; Robb & Ebberts, 2003a, 2003b; Silverman, 2003,
2011; Wlodarczyk, 2009). Schmidt described several techniques for facilitating songwriting
interventions, including word substitution, song collages, rewriting existing lyrics, improvising
songs, or using 12-bar blues form as a structure (Schmidt, 1983). In a 1990 article, O’Callaghan
presented another overview of songwriting, accompanied by techniques she had found helpful
for facilitating it. One of her most important tenets was that of offering clients as much control
in the process as they wanted or was possible. This included lyrics, melody, style, genre, tempo,
dynamics, and the title. Other researchers have built on her ideas and philosophies, resulting in
the much wider array of songwriting studies present in the literature today. Studies of
songwriting interventions span all ages, but children have benefitted significantly, especially in
the area of oncology.
Children in an isolated oncology setting receiving bone marrow transplants may benefit
from songwriting music therapy interventions (Hadley, 1996). Hadley found that through
songwriting methods of fill in the blank, parody, blues style, and original songs, children were
able to increase communication, improve coping skills, express their feelings, and gain a sense of
control. In other studies of children undergoing bone marrow transplantation, Robb and Ebberts
(2003a) used the State-Trait Anxiety Inventory for Children (STAIC) and the Children’s
Depression Inventory (CDI) to examine the effects of songwriting and video production.
Anxiety and depression varied depending upon what treatment phase the participants were in, but
overall, the intervention decreased anxiety. In their follow-up study, Robb and Ebberts (2003b)
concluded that lyrical themes of the children’s songs included independent coping, hope, family
3
support, positive and negative physical status, positive mental status, staff support, family
support, and appreciation. While not coded exactly as other researchers’ themes from palliative
care or traumatic brain injury studies (O’Callaghan, 1996; Baker et. al, 2005b), the lyrics in this
study seem to express some similar ideas, suggesting that even children may have similar needs
met through their songs.
Ledger performed a case study with an adolescent with cancer and found that through
song parody, a girl who previously seemed somewhat withdrawn and expressed some denial
about her illness was able to take control, make choices about her song, acknowledge her fears
and strengths, and gain a sense of accomplishment and pride (Ledger, 2001). In another case
study with children, Mayers demonstrated that children who had experienced trauma (physical
and sexual abuse or family breakdown) were able to cope better when they wrote their own
songs to describe their feelings. They performed their songs for parents or in some cases sang
them to themselves when dealing with problems, but in all cases the songs gave them a sense of
self-expression, control over their situation, and helped to ease their anxieties (Mayers, 1995).
Robb describes similar outcomes in a series of case examples of adolescents who have been
traumatically injured. Some of the outcomes noted through songwriting were increased self-
expression and self-esteem, helping patients adjust to the hospital environment, increased
communication, and expression of repressed emotions (Robb, 1996).
Mental health patients are another prominent area in the songwriting literature. As early
as 1976, Ficken used songwriting in a psychiatric setting to benefit patients with depression,
anxieties, and substance abuse problems. He explained through case examples that using group
and individual songwriting, clients were able to express themselves and begin to work on their
various needs in therapy (Ficken, 1976). In another study, Kooij engaged three patients with
schizophrenia, major depression, bipolar disorder and anxiety, and analyzed 17 songs they had
written in addition to interviewing them. She found that all three participants saw their illness as
something like a journey on a continuum between sickness and health, encapsulating aspects of
their destinations, their identity and sense of control, their level of social engagement, and hope.
Her conclusions were similar to Ficken’s, in that songwriting helped patients to express
4
themselves, increase social communication, and develop insight and awareness of their emotions
(Kooij, 2009).
In other studies with psychiatric clients, Silverman found similar positive outcomes. In a
case study of a combative patient with schizophrenia, adding an intervention desired by the client
as a contingency for good behavior, combined with other therapies and medication, seemed to
result in a lessening of combativeness and difficult behavior, and an increase in appropriate
prosocial behavior. It was posited by the author that due to the music therapist’s ability to build a
rapport with the client, and therefore encourage good behavior and trust, the music therapist was
able to help the client transfer his behavior to other areas of the hospital, eventually resulting in
his release (Silverman, 2003). In a 2011 study, Silverman used an experimental group (n=48)
and a control group (n=41) to study coping skills and working alliance in psychiatric patients.
The music group and control group were both single-session interventions, but the music group
used songwriting to discuss coping skills. While there were not significant differences between
the groups on measures of knowledge of coping skills, consumer working alliance, or perception
of enjoyment, the music group did score slightly higher in all three areas. There was a
significant difference between groups for therapist working alliance, where the music therapy
group scored higher, indicating a higher level of involvement in the session. While Silverman
focuses on acute psychiatric inpatient settings, Cordobés did a study on adults who were
diagnosed with clinical depression and who were also HIV positive.
Cordobés’ investigation used a three group design incorporating songwriting, game play,
and a no contact control group at an adult day center. Each group completed a group cohesion
questionnaire at the end of their group time. It was found that there was no significant difference
among groups for scores of cohesion; however, the songwriting group appeared to more adeptly
address treatment issues and support coping strategies. The music therapist also noted there was
more emotional expression witnessed during the songwriting group and that their song expressed
their feelings as well. Addressing another aspect of mental health, some authors have explored
songwriting with chemically dependent clients.
Freed described interventions with individuals who were chemically dependent and
identified potential goals and methods for songwriting with this population. Some goals the
5
author suggested for this population are expression and validation of feelings, increasing self-
awareness, and finding productive solutions to problems. These are often facilitated through
certain songwriting techniques such as fill in the blank (Cloze) and setting new words to existing
tunes, then using lyric analysis and discussion to explore the finished songs (Freed, 1987).
In a study of clients who were chemically dependent, Jones (2005) compared the music
therapy techniques of songwriting versus lyric analysis to determine which, if either, was more
effective or desirable when working with people with addictions. Using two equally sized
groups, Jones supplied the interventions in a single session and had clients complete Visual
Analogue Mood Scales as measures. Music therapy as a whole significantly increased joy,
acceptance, happiness, and enjoyment, while decreasing guilt, regret, blame, and distrust.
Although the study did not find significant differences between the groups, it did indicate that
songwriting resulted in somewhat larger emotional changes, and that clients showed a greater
preference for songwriting interventions than for lyric analysis. Jones suggested that some
changes were due to the fact that with songwriting, “The active process of identifying past,
present, and future ideas, feelings, and plans served to reduce frustration and guilt, where no
such changes were present for the lyric analysis group” (Jones, 2005, p.105).
In another study relating to mental health, a group of mothers in parenting classes
participated in songwriting. These mothers had experienced abuse as children, and were having
difficulty as parents. The researchers interviewed five women three years after they had gone
through the program to ascertain the effects it had on them. It was found that the intervention
helped the women to affirm their feelings, increase their awareness of the effects the abuse had
had on them, and brought a sense of achievement that they had each written their own song. All
the women had compact disc recordings of their songs, and several of them still listened to it,
and used it at times to explain to others about their experiences since words were too difficult
(Day, Baker, & Darlington, 2009). Emotionally impaired adolescents have also benefitted from
songwriting interventions.
Edgerton (1990) presented some case examples of group songwriting interventions with
adolescents with emotional problems. The various groups had differing goals that emerged
during treatment, and therefore various outcomes, ranging from increased self-concept and group
6
cohesion, to increased respect and self-expression. The interventions allowed the participants to
openly discuss emotions, issues of racism and compromise, and discover how to work
cooperatively within a group setting. Dementia is another aspect of mental illness caused by
identifiable organic changes in the brain, and Hong and Choi investigated songwriting as an
intervention with this population as well.
During a 16-week study, fifteen residents in a nursing home served as a control group,
and fifteen participated in music therapy sessions involving songwriting-oriented activities. The
Korean version of the Mini Mental State Examination (MMSE-K) was administered to all
participants two weeks prior to the beginning of the experiment, and one week after termination
of the sessions. It was found that the music therapy group showed an overall significant
improvement in their total MMSE-K scores, and in the subsets of language functioning,
orientation, and memory their scores also proved significantly higher than the control group,
indicating that the cognitive activity of songwriting may be helpful in improving function of the
elderly with dementias (Hong & Choi, 2011).
Baker et al. (2005a) analyzed the lyrics of songs that were written using three primary
songwriting methods by patients with traumatic brain injuries. These methods were word
substitution, adding verses to existing songs, and original song compositions. Despite the
varying methodologies of composition and the fact that some songs were completed in one
session and others over the course of as many as eight, the researchers found several common
themes. These themes were: messages, memories, reflections of others, expressions of adversity,
concern for the future, and imagery or spiritual themes. Songs with messages were the most
common, and often contained messages about the patient meant for others. Memories and self-
reflection were another common subject for these patients. The authors point out, however, that
in the case of those with traumatic brain injuries, memories are not to bring closure at end of life,
as in hospice, but rather to “contemplate their future life with a disability” (Baker, Kennelly, &
Tamplin, 2005b, p. 34). In terms of gender differences, Baker et. al (2005a) found that men were
more concerned about the future and adversity, whereas women’s songs tended to reflect
relationships. An analysis of song content based on age led Baker et. al (2005b) to the
conclusion that self reflection is common for all ages, but it is the most common for early and
7
older adolescents. Adults were likely to send messages through their songs, often describing
their life’s experiences in lieu of relational memories (Baker et. al, 2005b).
In another songwriting exploration, Baker et al. (2008) surveyed music therapists to find
out how often and why songwriting was used with their clients. They found that songwriting
was used most with patients in psychiatric settings, and that clients with developmental
disabilities and autism spectrum disorders were also frequently exposed to this intervention.
Intervention goals included increasing self-esteem, increasing opportunities for decision making,
improving the sense of self, expressing emotions, and telling personal stories. The surprising
finding was that songwriting was not used as frequently in palliative care and oncology settings.
However, it was stated that in palliative care settings, “clinicians utilize songwriting to promote
the externalization/exploration of feelings, thoughts and fantasies, and promoting coping through
the validation of experiences” (Baker, Wigram, Stott, and McFerran, 2008, p. 117-118). Other
goals that were used in palliative music therapy songwriting were communicating messages and
increasing quality of life (Baker et al. 2008).
In a continuation of their studies, Baker, Wigram, Stott, and McFerran completed an
investigation in 2009 examining further characteristics of the usage of songwriting across client
populations. It was found that in palliative care and oncology settings, songs were more likely to
be composed in a single session, patients were usually most responsible for the lyrics, and that
often they also had a significant impact on the music as well through decisions regarding genre,
style, or opinions about therapist-improvised harmonic progressions. Shared stories and songs
were often inspiration for their lyrics, and their songs were more likely to be recorded and given
to significant others.
Patients nearing the end of life are certainly in a different situation than those who are
recovering from brain injury, but O’Callaghan (1996) found similar themes to those of Baker et
al. (2005) in her study of palliative patients’ songs. She studied those ranging in age from
twenty-six to their eighties and suffering from end stage neurological diseases and cancer.
Among the patients with neurological disease, there were varying degrees of cognitive
impairment witnessed, ranging from mild to severe. Songs were written in differing session
formats and over varying lengths of time. O’Callaghan’s analysis of 64 songs by 39 different
8
patients found eight themes: messages, self-reflections, compliments, memories, reflections upon
significant others, expressions of adversity, imagery, and prayers. From this, there were seven
recurring categories in the lyrics of the songs, some of which were compliments to others,
thoughts about experiences and people, memories, thoughts of the future, and thanks for family
members. It was noted by O’Callaghan that compliments to others were very important in lyrics,
stating that “such lyrics would be important for patients’ relatives to hear to aid in their
bereavement” (O’Callaghan, 1996, p. 87). Hogan (2003) specifically names songwriting as a
useful music therapy intervention for patients who are dying, especially “if patients are
struggling to come to terms with their prognoses” (Hogan, 2003, p. 277).
In a summary of her thoughts on the benefits of songwriting in palliative care,
O’Callaghan (1997) argued that there are ten benefits to patients who participate in songwriting.
Among these were the chance to express themselves in a creative way, find ways to talk about
feelings, improve physical and social well being, gain opportunities for decision making,
increase comfort, and offer opportunities for counseling. As a final thought, she stated that
songwriting should be “available to all palliative care patients, offering them a chance of
continuing to creatively live a quality life” (O’Callaghan, 1997, p. 37).
Since songwriting may help the patient, it could in turn help the family; Hogan states that
it “alleviates the suffering of their significant others” (Hogan, 2003, p. 278). O’Callaghan (1996)
cites other researchers (Rezenbrink, 1993; Weiss & Parks, 1983) who argue that the positive
communications that can occur through songwriting can help family members and loved ones
cope in bereavement. Wlodarczyk (2009) states poetry therapy techniques can be combined with
music therapy and may result in patient songs which “provide an opportunity for personal
growth, a tangible connection to future generations, and serve as a healing tool in bereavement
for the family after the patient has died” (Wlodarczyk, 2009, p.135). In another application,
Krout states that songwriting may be used by music therapists to aid in the bereavement of
others. He argues for the use of therapist-composed songs to accompany bereavement rituals,
which help families to deal with their loss and find comfort and solace in the fact that others may
be experiencing similar feelings. He states that “By writing our own songs for such purposes, we
can craft them to best support and facilitate the goals of the programs, and to enable the
9
participants to work and move through their grief journeys in meaningful and healthy
ways” (Krout, 2005, p. 123). Being a caregiver is a difficult role, which is well documented in
the literature.
Caregivers and Bereavement
Often times in hospice settings, patients who are close to death are minimally responsive
and unable to communicate with family members who may be present. In a 2003 study, Krout
cited five case examples of music therapy’s ability to support family members holding vigil at a
bedside. He described how the patient’s symptoms or appearance may make it difficult for
families to feel comfortable and express their own emotions; music therapy sessions helped all
the families to reminisce, express themselves, and say goodbye to their loved ones. One woman
had even written a song for her husband, which the music therapist helped her to sing at the
bedside shortly before he passed. The inclusion of family members in sessions was a key factor
in another study, which found positive benefits for families of children in palliative care.
Fourteen families participated in five music therapy sessions each, and the parents provided
interviews following the interventions. The researchers found that three prominent themes which
emerged were the feelings that music therapy improved the child’s physical state, fostered
positive experiences, and gave the family opportunities for communication (Lindenfelser, Hense,
& McFerran, 2011).
In another study of caregivers, Choi (2010) found that the use of music and music
combined with progressive muscle relaxation decreased anxiety and fatigue in caregivers,
however to some extent these were lessened even in the control group. It was theorized in the
study that this was because those in the control group were free to do as they pleased for the
alloted time, and some chose relaxation exercises or even slept. The author pointed out that
“caring for a dying patient creates much stress for the caregivers” and can have detrimental
effects on their well-being (Choi, 2010, p. 54). This remark further elucidates the importance of
discovering what music therapy interventions have the most effect on family members, and
which techniques might help them to cope in bereavement, either because of positive experiences
they see happening for their loved ones, moments with their loved ones, or legacies left through
10
music therapy projects in hospice. This is especially important given that Masson (2002) found
that at times, patient perceptions of a “good death” differ from those of their relatives.
In a survey of ten hospice patients and ten relatives of patients who died in hospice care,
Masson found that some items, such as the nature of the dying act, the level of physical comfort,
and perceptions of normality and sense of control were perceived as important by both parties.
However, caregivers and relatives tended to place more importance on whether their loved one
was peaceful, as well as the concept of preparation and legacies of living. Rhodes, Mitchell,
Miller, Connor, and Teno (2008) found that families were more likely to feel satisfied with
hospice care services if they are kept informed about their loved one’s condition, feel
emotionally and spiritually supported before and after the death, get accurate information from
their hospice, and feel they know which nurse is in charge of care. In another study, it was found
that families who felt out of control, stressed, and like they were not communicated with about
their loved one’s condition rated the death of their loved one as “not good” (Workman & Mann,
2007). Obviously, in hospice care it is important to meet the needs of both the patient and the
family. Being a caregiver or family member of a dying person is difficult enough, but the
bereavement that follows can be still another challenge, one that may last through years of
adjustment to the loss of a loved one.
Magill (2009a) performed two studies on the effects of music therapy on caregivers. The
first involved interviews of seven bereaved caregivers of cancer patients. During interviews with
these bereaved caregivers, several trends emerged. The first was music as a conduit for
communication, the second illustrated how music causes physical changes in comfort, the third
emphasized that live music made a difference, and the last was simply that music is love. These
caregivers felt that music therapy was a blessing, and the author concluded that music therapy
served as “an aesthetic channel, inspiring patients and family members toward cherished
moments of love and renewed communication, memories that managed to help sustain caregivers
through the difficult days and weeks following the death of their loved one” (Magill, 2009, p.
37). In the second study, Magill (2009b) examined the spiritual meaning of music therapy for
bereaved caregivers, again using an interview format. Again, a number of themes emerged
which support the positive effects of music therapy on caregivers. Caregivers reported feelings
11
of joy, both in experiencing music for themselves and in seeing its effects on their loved one, as
well as feelings of empowerment that they were able to participate in an intervention that
benefitted their loved one. These feelings helped these caregivers to come to terms with their
impending loss because of their ability to see their loved one more peaceful and happy, as well as
knowing they too were somehow involved in that change. Another common feeling among the
respondents was that of connectedness brought about through the music, both internally and with
the patient or other family members. It was also thought that the music helped the patient to
connect with whatever was coming after this life for them. Other music therapy studies in
bereavement settings have shown positive outcomes for participants as well.
Hilliard (2001) provided an eight session bereavement music therapy program for school-
aged children using an experimental and control group. He examined the students’ scores on the
Behavior Rating Index for Children in school environments (BRIC) as well as results from
depression inventories and a Bereavement Questionnaire for Parents and Guardians (BP), and
found that the children in the experimental group who received music therapy-based
bereavement interventions significantly improved their scores on the BP measurement. They
also showed some improvement on the BRIC and in self-report depression levels, although these
were not significant. Register and Hilliard (2008) also posit that Orff-based music therapy
bereavement interventions can help children work through their feelings toward positive
outcomes. McFerran (2011) reviewed numerous studies involving children and adolescents and
concluded that music therapy interventions are valuable tools in bereavement, because they help
participants to express their emotions in controlled, safe environments and learn how to cope
positively with their losses amid a group of their peers. Another article concerning children and
teens presented several songwriting strategies and accompanying case examples. Among the
techniques used were word substitution, computer technology, original songs, and improvised
songs. The author felt that in the various cases, the participants were able to accept their loss,
memorialize loved ones, express emotions, develop coping mechanisms, and increase their self-
esteem (Roberts, 2006).
Songwriting has been used with youth in coping with the loss of a loved one. Dalton and
Krout (2005) analyzed 123 songs written by bereaved adolescents, and found that songwriting
12
was capable of addressing the topics of understanding the death, addressing feelings,
remembering their loved one, integrating loss into their lives, and growing through the loss.
They then developed the Grief Processing Scale to assess adolescent coping and tested it with a
pilot study using further songwriting with bereaved adolescents. They found that songwriting
benefitted the participants and that the scale seemed to be helpful in assessing progress.
Furthering their work in songwriting with youth, Dalton and Krout (2006) developed a Grief
Song-Writing Process protocol based on the five themes mentioned above and used it with study
participants. They concluded that these group songwriting experiences were helpful
environments in which to process grief. In another study involving teenagers, McFerran,
Roberts, and O’Grady (2010) provided a music therapy- based bereavement program which
featured songwriting, and asked students to participate in focus groups after the intervention was
completed. They found that the students felt like they were given permission to grieve, and that
it helped them to move on, release their emotions, increase relaxation and communication, and
feel comfortable sharing. In another series of vignettes regarding the effectiveness of
songwriting in palliative and bereavement care, Heath and Ling (2012) elucidate how
songwriting can be used by those on hospice to clarify feelings, leave gifts for loved ones, and
communicate thoughts. They also briefly address the ways that some bereaved children and
adult clients used songwriting to express their feelings about their loss in order to find comfort
and solace.
Hospice music therapy is now a well-established profession, and as shown above many
investigations have found proof of its efficacy. Likewise, music therapy has proven useful in
bereavement, particularly in children due to their developmental needs for specialized care.
However, not many music therapy studies have focused on adult bereavement. Additionally,
songwriting as a music therapy intervention has also shown numerous positive outcomes,
particularly with regard to hospice patients. Family members and caregivers have given positive
feedback regarding music therapy, both for themselves and their loved ones. Despite the myriad
studies relating to music therapy and songwriting, however, there is little work that has been
found by this researcher which explores the perceptions of family members as it relates to the
patient’s songwriting and hospice experience. This study proposes to examine the effects of
13
songwriting upon the family members and loved ones of hospice patients. Although leaving a
legacy in the form of song can speak somewhat for the patient’s feelings, those who survive them
have a voice and the ability to share their perspective on the experience, on music therapy, and
on the hospice itself. A plethora of studies were found indicating that music therapy can increase
quality of life for hospice patients, but this current study seeks to go a step further and investigate
whether this change is noticed by family members, and whether it effects their bereavement,
particularly when their loved one wrote an original song or had a song composed for them during
music therapy. The complex occurrences at end of life and the accompanying emotions affect
everyone differently. This study will examine different perceptions of the hospice experience
and find whether or not, despite each family’s unique situation, there are common themes in their
reflections of their experience of hospice music therapy and its impact upon their family.
14
CHAPTER TWO
METHOD
Participants
Participants (N=8) were chosen from a convenience sample of families whose loved one
was previously enrolled in a small midwestern hospice. All interviews were completed with one
family member who was close to the patient who passed away on hospice care (either a spouse
or child). In order to qualify for the study, the music therapist who visited the patient and their
family had to have written a song with the patient or for the patient. Family members were
contacted by the music therapist, with whom they were familiar and had a trusting relationship.
The music therapist introduced the study to the family member and asked if they were interested
in talking with the researcher and being a participant in the study. Participants were told that the
study related to music therapy, but were not told that the researcher was specifically interested in
their experience with songwriting. Upon their agreement to participate, they gave consent for
their contact information to be provided to the researcher. The researcher then contacted the
family members to arrange informed consent and interviews.
Table One: Participant Demographics
Participant Age Range Gender Ethnicity Education Religion Relationship
to Deceased
1 56-70 M Caucasian Bachelor’s Protestant Son
2 56-70 M Caucasian High School none
specified
Son
3 26-40 F Caucasian Bachelor’s Christian Daughter
4 56-70 F Caucasian Bachelor’s Catholic Spouse
5 41-55 F Caucasian Vocational/
Technical
Methodist Daughter
6 41-55 M Caucasian Master’s Catholic Son
7 56-70 F Caucasian Bachelor’s Lutheran Daughter
8 41-55 F Caucasian High School Spiritual,
none
specified
Spouse
15
Design
This study used interviews with family members to construct a case study format with
gathered data. Each case study consists of their perspectives on the hospice experience.
Although the researcher had a set of questions that was asked of each participant, the course of
the interview was guided by the family member’s responses and the researcher probed into areas
that the family member brought up voluntarily. All interviews were completed via telephone,
recorded, and played back for examination of content. Research questions this study sought to
explore were: 1) Does the experience of songwriting in a hospice setting influence the family’s
perception of the patient’s dying process? 2) Does having the loved one’s song or knowledge of
the song affect the family’s grief and bereavement process? 3) Did the songwriting change the
family’s perception of music therapy? 4) Did the songwriting significantly change the family’s
hospice experience? and 5) Are there any other notable trends in responses from the various
families?
Procedure
The researcher contacted participants to introduce herself and begin the process of
obtaining informed consent. After the initial conversation, either via email or phone (whichever
the participant’s preferred method of initial contact), the researcher sent out consent forms and a
short demographic questionnaire for participants to complete and send back. Participants were
encouraged to contact the researcher with any questions or concerns they had before signing the
form. Once the participant signed, the researcher contacted them to arrange a time for a
conversation. Interviews took place at the participants’ convenience via telephone calls. The
researcher reintroduced the study, again not mentioning songwriting, ensured that the
participants did not have any concerns and reminded them that the recordings would be
destroyed after the study was completed. When beginning the interview questions, the
researcher began recording the interview by placing the call on speakerphone and using
GarageBand 2008 software on Macintosh to record the conversation for review. After
completing the interview, the recording was played back and transcribed for analysis.
16
Measure
Descriptive and qualitative analysis measured trends in the responses of patients’ families
to a set series of interview questions about their hospice and bereavement experiences.
Prominent themes from each interview were identified and organized into categories, and the
number of participants indicating like-minded responses were tabulated. Based on the number of
participants who made like comments, descriptive analyses were applied to display percentage
rates of responses in each category. An independent music therapist examined 25% of interview
transcripts, and categories were compared to those established by the researcher. An overall
reliability of 83.7% was obtained by calculating agreements divided by agreements plus
disagreements for each interview.
17
CHAPTER THREE
RESULTS
Participant One
The first participant, Peter, was the bereaved son of a parent who had passed away less
than a year ago. When asked the initial interview question about his sense of his mother’s
hospice experience, he responded very positively, indicating that the personal attention was very
meaningful to her, and that hospice was frequently there to check on his loved one. He stated
that his mother was always respected and allowed to speak for herself whenever possible, and
that she would “light up” when someone from hospice came to visit. Peter felt that everyone
involved in his mother’s hospice care was able to provide her with comfort in some way. He also
felt very involved in her care through updates from hospice personnel and stated that hospice
was “proactive and not just reactive” with regard to her needs.
His experience with his mother was Peter’s first with hospice, and he found himself “very
impressed” with the level of care, which was “consistent, and so intimate and so caring” that they
felt almost like family. Peter felt that his mother was in good hands until the very end of her life.
When the interview began, Peter almost immediately brought up the use of music
therapy, stating that it had “a big impact” and that the music therapist was “the bell ringer.” He
stated that music therapy was something his mother looked forward to and that the therapist had
“tapped into” his mother’s musicality and that she “just loved it.” According to Peter, music was
an important part of his mother’s life because she was heavily involved in church music as an
adult, and as his mother’s illness progressed, “in the latter weeks and months of her life, that was
the brightest spot in her stay at [the nursing home], that was the one thing she looked forward
to.” Peter estimated that he attended at least eight to ten music therapy sessions, and whenever
he was not there his mother told him about sessions afterward. One time, another family
member witnessed the music therapy and also had many positive comments about it. Peter
commented that he had no idea music therapy existed prior to seeing a session with his mother,
and that he was “thrilled” she was receiving it. He also stated that he believed someone less
musically inclined might enjoy music therapy, but “wouldn’t have participated in it like Mom
did.” It is his belief that music therapy definitely affected his mother’s quality of life for the
18
good. While he did not want to discount the impact of all the other hospice personnel, he said
that the music therapist was “the key” and that “she really brought into Mom’s life something
that was so very special right up to the end.”
Peter said that when he found out his mother was helping to write a song, it was “way
beyond anything I could have imagined. Just the visits were wonderful and sharing the music…
but when she got down to that very personal level, and I know it was because she cared so much
for my mother that she wanted to do that…and I think of all that was done from the hospice, all
the good things that were accomplished for my mother, [the music therapist] was the brightest
light of all.” When asked about the song that resulted from his mother’s music therapy sessions,
Peter thought it was “really beyond anything I could have ever hoped for…it’s a real treasure as
far as memories.” He felt that writing the song gave his mother purpose and was very
meaningful because she was able to be a part of it. The song was played by the music therapist
at the funeral, and Peter said it was “the highlight of the funeral” and had a huge impact on
everyone present. Peter still listens to his mother’s song, which he has a framed copy of at home.
Peter commented that the greatest source of comfort for him since his mother’s passing is
knowing that she is no longer suffering and has gone to be with the Lord, because her suffering
was the hardest thing for him to witness since he felt helpless against it. Although he stated that
the hospice’s follow-up has been the biggest help during his bereavement, he said that his
mother’s song became “a visible memory, a treasure, something very meaningful to cherish
going forward, all of this happening at the close of her life…it’s very, very special.”
Participant Two
Several years ago, Matthew also lost his mother, whom he said he still misses each day.
Matthew had many positive things to say about hospice; he thought they were a blessing to his
mother and often it made her day when someone from hospice visited. He also felt that hospice
was respectful of his mother and allowed her to make her own decisions whenever possible.
When asked if anything specific came to mind with regard to decision making, he brought up the
music therapist coming to visit and making a recording with his mother singing a song. He
stated that his mother was “just elated over it” and that she was “tickled to death, you could see it
in her eyes and the tone of her voice.” Although that particular instance was not a recording of
19
an original song, but rather a familiar hymn that the patient knew, Matthew said it made his
mother very happy and definitely gave her a sense of control.
Matthew also felt that hospice was very effective in providing comfort to his mother.
One day, an off duty hospice employee brought lunch and came to see her; Matthew felt very
grateful that someone cared so much about his mother that she stopped by to spend time with her
on her day off. It embodied much of his experience with hospice, because everyone seemed to
truly care and want to help. He pointed out that the same girl who visited his mother with lunch
was the one who called him late one evening when she passed. He was touched at how upset she
was about it, and said that it was evident how much she cared, despite the fact she had not known
his mother for long. Matthew thought that the people who worked for hospice were the best
thing about it because of their compassion.
Since it has been several years, Matthew said he did not remember too vividly how he
felt after his mother passed away. It clearly still pained him to think about it, but he offered that
his family helped him to get through it, along with his knowledge of his mother’s faith. Matthew
knew his mother believed ardently in heaven and in God, and stated that “I know she’s there
now.” He also said he was comforted by the fact that he no longer had to watch his mother
suffer, because that was the most difficult part of the experience for him.
Matthew did not know about music therapy and did not recall knowing that his mother
was receiving it until he arrived one day to find the music therapist making a recording with her.
It was the only session he saw, but he said “if it works for anybody else the way it worked for my
mother, I think it’s wonderful.” He felt that part of the reason music therapy was so successful
with his mother was her musical background. Matthew’s opinion was “that did a lot more for her
maybe than it might have done for somebody that had no music sense or hadn’t been around it
very much.” He summed up his opinion of music therapy by saying that it affected his hospice
experience because families who are “going through those times and stuff, and they see
somebody in that situation, anything that makes their life better makes everybody’s life that
surrounds them better.” His mother would talk about her music therapy sessions with Matthew
when he came to visit her, and he could tell that she was happy on days the music therapist had
visited.
20
When asked what he thought about his mother writing a song with the music therapist, he
began to laugh and said “I thought it was great!” He commented that his mother mentioned to
him that she “never thought once in her life that she’d ever record a song or write a song or do a
song, and she did!” He summed it up by saying that the experience was “unique” because not
many people get to do something like that. Matthew has a recording of his mother’s song, but
said that he has not listened to it for quite some time, because he has “to be in the right frame of
mind to do that” since it makes him very sad. He said that “things like that are depressing to me,
and I’m trying to move on past a lot of that,” but that he keeps her song as a “keepsake.”
Participant Three
Megan’s mother passed away 20 months prior to the interview. Megan was very open to
discussing her family’s experience while her mother was in hospice care and had nothing but
good things to say about the care they received. She summed up what she felt her mother’s
thoughts were and said “she absolutely loved hospice.” Her mother knew that her disease would
be terminal and initially involved herself in a transitional program, eventually enrolling in
hospice care and beginning to take advantage of the other services offered, including music
therapy, which Megan brought up early during the interview.
Megan said that her mother was “musically inclined” and had sung in choirs at church
over the years, so “she was immediately drawn to the music therapy because of course she
enjoyed it, it brought her joy, and she probably figured it would bring her peace and just help
her.” She also felt that the music therapist tapped into her mother’s faith and helped her accept
the situation, so she was comfortable with hospice, but with the music therapist in particular she
“had a wonderful connection, and she was so pleased, I mean it really made a difference for her.”
It was at that point that Megan brought up the song, saying that her mother had supplied the
lyrics and the music therapist did the music. Megan said that the song was then played at her
mother’s bedside throughout her illness up until her death. She also mentioned that the song was
played by the music therapist at her mother’s memorial, stating that “hospice is there for the
terminal ill, but it’s also support for the family, right? And so, it was [the music therapist]
definitely, and the music therapy that she provided touched my mom and our family alike...”
Megan remarked that she has not listened to the song for a while, but the song has influenced her
21
after her mother’s passing because it is like “her speaking to us again and again that ‘this is my
experience and I’m very much at peace with it,’” which the family finds comforting.
Megan made copies of the CD with her mother’s song on it and gave them to everyone at
the memorial service. She said that the song “was like her goodbye, the lyrics of the song have
to do with kind of her life and how she wanted people to remember her. So, it was like her
message also, it was almost like her parting message to everyone who she wouldn’t be able to
say goodbye to.” The song “defined who she was” for everyone who heard it.
Another significant experience for Megan came in the last days of her mother’s life when
she was on oxygen to help her breathe. With the help of hospice team members while she was
still able to communicate, Megan’s mother had completed a “Five Wishes” document, which
indicated that she did not want her life prolonged artificially. Megan said that while she was
grappling with the decision of what to do for her mother, hospice gently reminded her of the
document, which “gave peace” to her and comforted her in making the decision to remove the
oxygen support, which she said has helped her since her mom’s death. Overall, she felt that the
hospice provided much comfort to her mother and the family, stating they were “encouraging,
supportive, resourceful, and available” throughout the experience, which were the best things
about hospice in her mind.
With regard to her bereavement, Megan did not feel the need to attend any of the
hospice’s offerings, but appreciated the follow-up regardless. She felt that her mother was “very
much at peace with dying, and the whole experience was… I mean, dying can be beautiful, it
was as beautiful as we could have expected.” Like some other respondents, she felt that her
mother had gone on to a better place, and that a lifetime of good memories, along with the
support of hospice, family, and friends, was helpful in getting her through after the loss. In
addition to her mother’s song, Megan said she often reads bible verses her mother wrote out on
cards and talks to her children about their grandmother.
Megan knew a bit about music therapy before hospice, but she said she was not sure that
she would have associated it with hospice, and thought it was used more for rehabilitation
purposes. Her initial ideas were that someone would sit at the bedside and play music, and to
some extent that did happen, but with the songwriting she felt that so much more was
22
accomplished because the process evolved into something so personalized. Megan saw three or
four sessions and felt like music therapy “was so much more probably than I ever could have
imagined” and that “music can bring you to a time or a place or a feeling. In addition to that,
they could certainly continue to use it for people to communicate their final wishes or what they
want people to remember.” Megan felt it was “a beautiful thing because it lived beyond my
mom, you know? It wasn’t just for her but it’s for all of us, and it’s also for her to communicate
to all of us something that she can’t because she’s not here anymore.”
Participant Four
Elizabeth lost her husband to cancer three years prior to the interview. She said that he
had initially looked into hospice, decided he was not ready for it, and eventually signed up for
services five to six weeks prior to his death. She stated that it was a “good experience” for him
and that he was very alert until the very end and enjoyed interacting with hospice personnel,
whom she felt gave him control and allowed him to express himself. She expressed that the
availability of care at all times was the best thing about hospice. Elizabeth brought up music
therapy right away and said her husband really enjoyed it, and that the whole family were “music
lovers.” Her summation of their experience in music therapy was “Oh wow!” When asked why
she said that, she replied, “writing the song…she wrote a song for our family after coming
several times.” She followed this by saying that the song was “the best gift of the entire
experience with his illness. It’s just a wonderful, wonderful keepsake for us.” Elizabeth
emphasized, “I play that song so much, I can’t tell you…it’s just the best thing ever.”
When she described the songwriting experience of the family, Elizabeth said that they all
sat around and reminisced about family memories together, and the music therapist suggested
writing a song, which surprised the whole family. She worked with the family to turn their
thoughts into lyrics. The music therapist had completed a chorus for the family and was
planning to bring it to let Elizabeth’s husband hear it; however, he died suddenly before getting
to hear the song. When Elizabeth and her family heard the completed portion, they asked the
music therapist to complete the rest of the song, which was eventually put onto a CD recording.
The music therapist also sang at the funeral, although the family’s song was not performed.
23
Elizabeth had some previous contact with music therapy when her husband was in a
hospital for treatment earlier in his illness. Still, with hospice, she said that the music therapy
was “more than what I expected” because she thought it would be more like in the hospital, with
just some music at the bedside while the patient relaxed. She felt like the music “took a very
depressing, dark time and made it enjoyable” since her husband looked forward to visits. Her
husband’s quality of life was improved, and Elizabeth said that when she thinks about hospice,
music therapy is the first thing to come to her mind. She stated that their family song had many
memories incorporated into it. “Little did I realize how wonderful that gift is, when we were
doing it. I really had no idea what it would mean to me.” Elizabeth grew tearful and said she
listens to the song whenever she drives to the cemetery to visit her husband’s grave. As far as
memorializing her husband, the song is very important to her because “she really captures the
essence of him in the chorus, in what a giving person he was, and in the end…she’s done a
wonderful job of capturing who he was. So that’s why I think that besides all the memories,
that’s why the song is so special to me. Because it just makes me feel him.” Elizabeth said that
in addition to the song, a bereavement group, her faith, family, and friends helped her to work
through her grief. She now finds comfort in the word hospice because it brings to mind an
organization that was there for her in her time of need.
Participant Five
Alice’s mother passed almost two years ago, but she had many positive things to share
about the whole family’s experience in hospice. Her mother came from a medical background,
and knew that her neurological disease would progressively worsen, so she signed up for
hospice. Alice and her siblings originally thought that hospice only came in when someone was
about to die, so at first they were frightened that their mother was worse than they thought. They
soon came to understand that hospice helps “not just to die, but to live,” and saw their mother
forge bonds with all the hospice personnel over the next two years, during which time she wrote
numerous songs in music therapy.
Alice felt that hospice allowed her mother to “live with dignity and die the same way”
because they gave her mother control over her care, kept her informed, and allowed her to
express her feelings to counselors, pastoral care, the music therapist, and nursing staff. She said
24
that her mother was always kept comfortable, both physically and emotionally, because of the
services offered. Additionally, the family was allowed to express their emotions to the
counseling staff too, so that everyone felt as though they were heard and empathized with. Alice
felt that since her mother lived for two years on hospice care, she was able to really take
advantage of the services and build relationships with everyone, which made the whole
experience even more comforting and meaningful to them. Music therapy in particular helped
give Alice’s mother an outlet for her creativity as she began to lose her ability to do things she
loved.
During her two years on hospice, Alice’s mother wrote several songs. She was a writer,
and the music therapist suggested setting some of her words to music, after which songwriting
became a regular activity during their sessions. Her mother had a lot of input on the melodies,
style, and tempo. Alice saw about six or seven sessions, and said that her mother “just loved” it.
She even lived long enough to attend the debut of the CD on which several of her songs were
featured, which Alice said “was huge for her.” On days when her mother was tired or not feeling
well, Alice described relaxing sessions of bedside music, but overall the songwriting was her
“Mom’s whole life.” Alice felt as though music therapy affected her mom’s whole experience,
because it was “a time when we saw Mom wanting to be so engaged.” She did not realize how
comprehensive and involved music therapy could be; she knew it was used with other
populations, but imagined it mostly for older people in nursing homes. She said that her mother
had no idea she would actually be writing music.
Since her mother passed, Alice has not gone to any bereavement groups. Instead, she
relied on her church, her family, and her friends, where she felt she had ample support. She said
the use of the hospice counselors while her mother was alive helped to keep their relationship
good, and therefore helped her after her mother’s death. Alice was not able to listen to her
mother’s music for some time after she died because it was too emotional for her. However, now
she says she listens to the songs occasionally, and feels like “none of them are really about dying,
it’s about their lives or situations,” which changed the songs from something sad to helping her
remember positive things. Alice finds comfort in thinking about how much her mother loved
writing songs.
25
Participant Six
Bruce and his family have suffered two great losses in recent years. Bruce lost his son,
and then two years ago, his mother passed away as well. Her illness was difficult for Bruce, in
part because he did not live nearby and was unable to visit his mother in the nursing home very
often. He did not have much involvement with hospice, but said having them to look after her
made him feel better, because at least he knew there was someone there to spend time with her.
For Bruce, the care and personal attention he felt his mother was given were the best things about
involving hospice, and he said he would recommend them to others.
When asked what he thought his mother’s perception of hospice was, Bruce immediately
brought up that his mother had been a singer for many years and that she also enjoyed writing
poems and had even written for a newspaper for some time. Therefore, “it was a high point in
her life working with [the music therapist].” He thought since his mother had lost the ability to
participate in music as she got older and could no longer perform, working on a song with the
music therapist was a great comfort to her because it allowed her “to be immortalized in some
small way” and “gave her purpose” because she was writing something other people would hear.
Bruce went to music school and was acquainted with some music therapy students,
however, he still did not realize exactly what it was used for until now. He felt that the music
therapist “may have gone above and beyond what somebody else would do, but you know,
obviously it did change my perception” of the field. He also thought that his mother got more
out of music therapy than most people would because of her musical background. It was his
opinion that music therapy did increase his mother’s quality of life because it allowed her to be
productive, and that helped him to feel a bit better about her being in the nursing home.
The song that Bruce’s mother wrote began with a poem that she penned about her
grandson who had passed away. She asked the music therapist to set it to music. Having not
seen any music therapy sessions, Bruce was not aware of exactly what his mother’s role in
writing the melody was, but he felt that she probably had some input, and that it made her feel in
control of something. He said that his mother often talked of the time she spent in music therapy
and he could tell it made her happy. After his mother passed, her song was played for the family
for the first time at her funeral. Bruce said “we kind of knew it was coming but we didn’t know
26
to what extent” and that it was “important for us for our son to not be forgotten, and it’s
important for us for our mother to not be forgotten.”
After Bruce’s son died, he said his mother was never quite the same, and he still feels
some anger toward her because she did not take care of herself and died too young. Despite this
though, Bruce commented that he still keeps the CD with his mother’s song on it in his car, and
listens to it occasionally when thinking about them both. The song helps him to remember his
mother in a good way, without feeling anger, because it was something nice that she did, and “to
have that one piece that was written for him by her is a nice remembrance.”
Participant Seven
Stephanie’s father passed approximately nine months prior to the interview, and was only
on hospice for a short period of time. In that amount of time, though, much was accomplished
for her dad and her family because of the caring people of hospice. Stephanie felt her father had
a good experience with hospice, because he was kept comfortable and the pastoral care, nurses,
and other people they interacted with seemed truly concerned and thoughtful. When asked if her
dad was able to express himself while on hospice, Stephanie brought up music therapy and said
that her dad was able to sing along with the family and the music therapist during the first visit,
which she said was “very meaningful to him” because of his strong faith background and the fact
that his wife and family surrounded him for the experience. Additionally, she said the use of live
music really enhanced the experience. Next to the music, it seemed as though the spiritual care
was the other important aspect of her father’s experience.
Music therapy was brought up again when Stephanie talked about her own experience
with hospice. She is a musician, and said that “music really touches my soul because it’s so
important to me, so when she came it really fed that part of me, you know…it ministered to my
soul.” However, Stephanie did not know too much about music therapy before experiencing it in
hospice and explained that she associated it with children with special needs and older adults and
was unaware that it was used in hospice. She also expressed surprise that the therapist was
willing to provide spiritual music, as she thought it might be limited to secular songs only.
Despite not knowing these things though, her family still accepted music therapy services when
the hospice offered them.
27
Stephanie said that her father and the family had picked out some verses for the funeral
that they planned to set to music, but when the music therapist came back later in the week, her
father was no longer able to interact or respond. Instead, the music therapist engaged the family
in reminiscing about and describing their loved one, and in a single session, the family had
helped to write lyrics and a melody about their father. The whole family was surprised and
somewhat taken aback at what they were able to accomplish. Stephanie and the music therapist
then sang the completed song at the end of the session, after which she said everyone was crying
and told them they wanted the song to be sung at the funeral as well.
Stephanie had already planned to sing one song for the funeral at her father’s request, but
“when this other song happened, you know, it just felt like the right thing to add to his service
and to share with the people that were there, and I think it meant a lot to our family to go through
that experience as well.” She found the experience comforting and not as difficult as she
anticipated. Her faith helped carry her through the experience, and she felt that other families
might not be able to write a song like hers did since they were musically inclined. She felt that
God wanted them to have the experience that they did, and that for other families who might not
have a musical background, it “would be a good experience if they would give it a try.” Unlike
some other bereaved family members that participated in this study, Stephanie said she listened
to the song immediately after her father’s passing and found it comforting. She still listens to it
on occasion when she thinks of him.
After her father died, Stephanie found several ways to memorialize him and work through
her grief. She said that talking with friends and loved ones and telling them about their family’s
experience with songwriting was very helpful, and that they had commissioned a memorial for
him in their church as well. She summed it up by saying “the music added so much for us that it
really helped, I think, that grieving process, to be able to think back on that week, that I wasn’t
sad. I was glad that we could do this song for my dad to honor him, and so it just kind of
changed the perspective on how you look at the last week. You know, it wasn’t a dreadful week,
it was a peaceful week.”
28
Participant Eight
Sandra lost her husband eleven months prior to the interview, and it was still difficult for
her to talk about it at times. She felt that he had a good experience, in part because he had
volunteered for hospice and knew the people within the organization, so he had a pre-established
relationship with them. She also said that he felt “wonderful” about it because for the first time
in ten years, he was able to live without pain. The fact that he was physically comfortable at last
was something in which they both took solace.
Sandra also knew that the music therapy was another prominent feature which made her
husband’s experience a good one. While talking with the music therapist one day, he showed her
some letters he had received from his children which detailed how important he was to them, and
they decided to write a song using the letters for lyrics. Sandra said “it was just amazing to see,
because [he] was able to be a part of it, a part of how he wanted it,” and he got to have input
about how it should sound. When the music therapist brought the song back completed for her
husband to hear, he “was here but not really here,” but Sandra knew that he could hear it,
because when another person sang to him later on he squeezed her hand. Sandra’s husband was
able to plan his funeral while on hospice, which she thought “was beautiful,” and he had
requested that the music therapist play his song at the service. Sandra felt that writing his song
increased her husband’s quality of life because “it gave him something to think about. I don’t
want to say a mission, but, it gave him joy in knowing that she was going to bring it all together
for him.”
Music therapy was something that neither Sandra nor her husband had heard of prior to
hospice, but being music lovers, they decided to give it a try when it was offered to them.
Sandra said that she “didn’t know there was anything like that as part of hospice, I thought it was
awesome.” It gave them both a time where they could just relax and enjoy being together along
with the music. Another reason they chose to engage in music therapy was that it was another
level of support from hospice they could utilize. At first, Sandra thought that music therapy
might just be something like a “singalong,” but after hearing it explained to her and seeing it
firsthand in three or four sessions during the final weeks of her husband’s life, she now sees it as
something that can help her go to a peaceful place.
29
Sandra thought that during her husband’s time on hospice, he was certainly allowed to
make his own decisions, but he often deferred to her, except when it came to his songwriting.
She loved that the hospice involved the whole family and not just the patient, because she felt
that the staff took care of her as much as they took care of her husband. Sandra’s husband was
very expressive during his final days, and one instance that still brings Sandra comfort is
something he told her late one night. He described to her that he could see multiple family
members who had already passed, including Sandra’s mother, his daughter, a friend, and his own
parents. He told Sandra that they wanted him to come meet some other people and that they
were all standing behind a curtain of sorts, waiting for him to be with them. Sandra said “you
hear all the time that there is something out there after we leave…but for someone to experience
it and be able to tell you what they’re seeing, it was very powerful for me.” It was also
something that she felt brought peace to her husband.
Sandra said that she has had a very difficult time since losing her husband because of
changes in her own health and shifts within the family structure. She created a memorial for her
husband in her living room which displays his ashes, photos, and other mementos of his life. She
has read the lyrics to his song, but has not been able to listen to it yet. Sandra tries to “look at all
the good and think of all the good times we had,” such as vacations together and other good
memories. She feels as though she has been holding back her grief and is just now beginning to
work through it, but she said “I can’t speak higher of hospice. The whole experience was
absolutely wonderful, and I think the way that they pull in the whole family, not just the patient,
is wonderful.”
30
Summary of Results
Table Two: Session Attendance, Use of Song at Funerals, and Recommendations
Participant Number of Sessions Witnessed Song Played at
Memorial or Funeral
Would Recommend
This Hospice to
Others
1 8 - 10 Yes Yes
2 1 No Yes
3 3 - 4 Yes Yes
4 5 - 6 No Yes
5 6 - 7 Yes Yes
6 0 Yes Yes
7 2 Yes Yes
8 3 - 4 Yes Yes

There was a fairly wide variety in the number of sessions witnessed by the family
member who was interviewed, ranging from none up to ten. Also, the amount of time that their
loved one was on hospice varied greatly, ranging from one week to two years. Therefore, one
participant saw all the sessions that occurred with their family in one week, whereas another saw
only six or seven sessions over the course of two years. Despite these differences, every person
interviewed had positive comments about the hospice, the music therapy, the songwriting
experience, and the music therapist. In 75% of the cases, the song that was written by or for the
patient was performed as part of the funeral or a memorial service. Of the remaining two cases,
the music therapist played at the funeral (but did not perform the song) in one, leaving only one
instance in which neither the music therapist nor the song was involved in memorial services.
Every participant indicated that their experience was positive enough they would recommend
this hospice to others.
31
Table Three: First Mention of Songwriting
Time in the Interview at which Songwriting was Mentioned Number of
Participants
Percentage
of
Participants
First spoke about songwriting during initial question of interview:
“Do you have any sense of your loved one’s perception of their
hospice experience?”
5 62.50%
First spoke about songwriting during second question of
interview:
“Do you feel like your loved one was given opportunities to make
their own decisions while on hospice care if that was possible?”
1 12.50%
First spoke about songwriting during third question of interview:
“Do you think your loved one was able to express him/herself
while on hospice?”
1 12.50%
First spoke about songwriting during fifth question of interview:
“Tell me about your experience with hospice.”
1 12.50%

The data in the above table show that 62.5% of participants initially mentioned
songwriting when asked the first interview question regarding what they thought of their loved
one’s hospice experience. One person mentioned it during the second question, one during the
third question, and one brought up music therapy during the first question, but did not speak
about songwriting until she was asked the fifth question regarding her experience. Combined,
these results indicate that for seven out of the eight respondents (87.5%), songwriting played a
big enough role in the hospice experience that it was mentioned while the participant was still
describing what they perceived their loved one thought about hospice. Most often, the
participant would bring up the music therapist coming to see their loved one and how they
looked forward to it; then they would add that she helped their loved one to write a song.
32
Table Four: Time of Death Compared to Ability to Listen to Song
Participant Relationship
to Deceased
Time of Loved One’s
Death Prior to Interview
Able to Listen to Song at Time of
Interview
1 Son 11 months Yes
2 Son 3 years Yes, but has not for some time/prefers
not to because it evokes sadness
3 Daughter 20 months Yes, but has not for some time due to
family obligations/time constraints
4 Spouse 3 years Yes, and does so frequently
5 Daughter 23 months Yes, occasionally
6 Son 2 years Yes, occasionally
7 Daughter 9 months Yes, and was able to listen
immediately after loss
8 Spouse 11 months No, but has read the lyrics
There does not appear to be any clear correlation between when each participant lost their
loved one and their ability or desire to listen to the song that was written during hospice. The
two participants who indicated that they could not or did not like to listen to the song lost their
loved ones at very different times, one three years ago and one just 11 months ago. Others said
they could listen to the song right away after the death of their loved one and that it brought
comfort to them because of the good memories. Of the two participants who lost their spouse,
one has always found the song very comforting because it brings back good memories, while the
other has been unable to listen to it yet. Interestingly, the participant who listened to the song
immediately after losing her husband was the only one who was sure that multiple other family
members also listened to the song a lot after the funeral, and continue to listen to it. All
participants indicated that they do have a recording of the song.
33
Table Five: Themes in Perceptions of Music Therapy
Theme Number of
Participants
Percentage of
Participants
Had never heard of music therapy before 3 37.50%
Limited knowledge of music therapy, thought music therapy
was used in nursing homes, or as entertainment
3 37.50%
Knew a bit about or had experienced music therapy before 2 25%
Did not realize how involved they could be in the music
therapy process/ expressions of “it was more than I thought”
6 75%
Feelings that because they were trained in music or were
“music lovers,” they got more out of the experience than
someone without
5 62.50%
Expressions that the music therapist did something extra or
something special for their family
5 62.50%
Compliments directly about the music therapist 5 62.50%
Music therapy had a positive effect on the overall hospice
experience
8 100%

Three of the participants said that they had never even heard of music therapy or had no
idea it existed. Of those that said they knew a little about it or had heard of it, several
commented that they thought of it being used with “old people in nursing homes” or similar
settings. One person had seen music therapy prior to hospice when her husband was in a
hospital, and the other person who felt they knew a little bit about it said that they felt they could
have defined it to some extent, but that they thought it was used more for rehabilitation purposes
and not in hospice. Many of the participants indicated surprise at how involved they or their
family member’s experience became, because it was often perceived that music therapy would
be something passive, where they might just sit and listen as music was played at the bedside.
Another common theme that was noted was the thought that because they or their family
member were trained musically, had sung in choirs or performed in some way, or were otherwise
“music lovers,” they were able to get more out of the experience and the songs had more
34
meaning for them. It was also frequently perceived that the music therapist had done something
beyond what was required for her job. Two people made direct remarks of her “going above and
beyond” or “going to great lengths,” while the others made more general comments indicating
that the music therapist established a great bond, truly cared, and did something special by
helping them write a song. There were also numerous compliments directly about the music
therapist describing her as “generous,” “caring,” “a beautiful person,” or “the key” to their
hospice experience. Every family member spoken to said that music therapy affected their
overall experience of hospice in a positive way. One person said that whenever hospice is
mentioned, music therapy is the first thing that comes to mind because her family’s experience
with it was so meaningful for all of them.
Table Six: Themes in Perceptions about Songwriting
Theme Number of
Participants
Percentage of
Participants
Song as a message 4 50%
Song embodied who the patient was 4 50%
Felt songwriting gave the patient purpose 5 62.50%
Felt intimidated or surprised at initial introduction to
songwriting
2 25%
Perceived that music therapy/songwriting increased quality of
life for the patient
8 100%
Indicated that the song continues to be meaningful for the
family
8 100%

There were numerous indications that the songs composed by or for the patients in this
study carried significant meaning for the family. Several family members made remarks
indicating that the music therapist had “captured” who the person was, or that songs
“communicated” a message or a valued memory within their lyrics. In some cases, the
participants seemed to suggest that it did both. In two cases, the family members were involved
35
in writing a song for the patient. In both, the participant said something indicating that they were
surprised, shocked, or a bit intimidated about writing a song, because it was perceived as
something they had never done before or did not know how to do. However, in both cases, the
songs became valuable memories and are thought of as good compositions by the family. Every
participant indicated that music therapy or songwriting definitely increased their loved one’s
quality of life, which in turn brought them comfort. All the family members made comments
that showed the song was and still is meaningful for them. Even those that do not listen to it
often, or are still unable to listen to it, said things indicating it is a “keepsake” or “remembrance”
for them, or that it otherwise brings them comfort knowing how much their loved one put into
writing it. Comments such as “it makes me think how much she enjoyed doing that,” “it was the
highlight of her week,” “a high point in her life,” “it helps me to see the positives,” and “it was
her whole life” display the reassurance the experience provided the family.
Table Seven: Themes in Perceptions of Hospice
Theme Number of
Participants
Percentage of
Participants
Family member thought hospice was for right before
death or didn’t understand services well at beginning of
experience
6 75%
Family member had previous knowledge or familiarity
with hospice through prior involvement with another
patient or volunteering
2 25%
Hospice cared for whole family, not just patient 5 62.50%
Hospice helped people to live, not just die 5 62.50%
Felt personalized, caring attention 8 100%
A majority of the family members interviewed said they were not aware of the extent of
services provided by hospice, or had no knowledge of hospice prior to their loved one enrolling.
Some said they thought it was just nursing care and did not realize there would be counseling,
pastoral care, or music therapy. Others had some idea of what was included but did not realize
36
how involved all members of the hospice team would be throughout the process. Only two
people had either volunteered for hospice before or had a loved one enrolled and knew what was
provided. However, even those two respondents were unaware that music therapy was available.
Many indicated that even after being offered music therapy, they did not really understand what
it was until the music therapist visited and explained it. One family member specifically said
that had her family not been musically inclined, they might not have taken the offer of music
therapy because it was not explained to them at all, just offered. The same person also indicated
that she felt the hospice sign-up process was too lengthy and tiring for the whole family. Another
frequent theme was that of hospice helping people to live. It was noted specifically by five
people that the care in hospice helped patients to live their lives to the fullest extent possible and
enjoy their final days with their families. All those interviewed made some comment regarding
how personal, caring, or otherwise attentive hospice was to everyone’s needs during the entire
process.
Table Eight: Themes in Bereavement
Theme Number of
Participants
Percentage
of
Participants
Had not dealt with their loss 2 25%
Cited faith as a valuable tool in bereavement 6 75%
Cited friends as a resource in bereavement 4 50%
Cited family as a resource in bereavement 5 62.50%
Cited follow-up (letters, cards, bereavement groups) as helpful in
bereavement
3 37.50%
Cited song as something special to remember or that has helped
coping
4 50%
When it came to their grief, there was a wide range of supports identified by the various
participants. The song did seem to provide comfort to the majority of the family members, as
37
evidenced by comments about it being a keepsake, evoking positive thoughts, or something that
contained a message which brought comfort. However, although many of them had indicated that
the song was special to them, only four specifically mentioned it when asked what has helped
them deal with their loss or if they use anything special as a remembrance. Religious faith was a
factor for six respondents, making it the most commonly cited comfort. A number of those
interviewed listed multiple things as being helpful with their grief. Often family and friends
were grouped together, or faith and family. While only three people specifically mentioned the
hospice’s follow-up or use of bereavement groups as helpful, several others mentioned that it
was nice to see that they still sent things in the mail and “still cared” about what the family was
going through. Two respondents specifically said they have not fully dealt with their loss yet,
because they stop themselves from thinking about it. Both said they knew it was not the best
way to cope with their feelings, but only one said she was seeking further assistance to process
her grief.
38
CHAPTER FOUR
DISCUSSION
Research questions this study sought to explore were: 1) Does the experience of
songwriting in a hospice setting influence the family’s perception of the patient’s dying process?
2) Does having the loved one’s song or knowledge of the song affect the family’s grief and
bereavement process? 3) Did the songwriting change the family’s perception of music therapy?
4) Did the songwriting significantly change the family’s hospice experience? and 5) Are there
any other notable trends in responses from the various families? Results indicate that
songwriting had a significant influence on each patient’s family, as evidenced by comments
about their increased quality of life or the music therapy helping them to focus on living rather
than dying. With regard to grief, the song seemed to have meaning for many, but often a
combination of factors was given as helpful during grieving. Songwriting and music therapy
combined changed all the families’ perceptions of music therapy, as well as their hospice
experience. Other trends were noted across all lines of questioning and are further elucidated
below.
All of the family members interviewed for this study had very positive things to say about
hospice care in general, and all of them said they would recommend the hospice they used to
others in need. Overall, the round-the-clock availability of care and support, the caring, personal
attention, the wonderful and giving people, the music therapy, and the positive relationships were
some of the most beneficial things noted by the various families. Another thing frequently
commented on was the physical and emotional comfort provided to the patient and the family. In
particular, they seemed to emphasize the availability of the people who provided the care and the
genuine compassion and caring they witnessed in them. The families involved in this study all
indicated that hospice was a valuable resource for them.
The music therapist was complimented numerous times, especially for the perception that
she went above and beyond and did something extra special for their family member.
Interestingly, many of the participants did not know much about music therapy prior to
experiencing it in hospice, but a number of them said they thought it was used for older
populations in nursing homes, where it was perceived as more entertainment than therapy. All of
39
their opinions about this changed when they saw the impact that this therapy had on their loved
one or their family. Additionally, a large number of those interviewed expressed surprise at how
involved the music therapy process was, and also felt that because of they or their loved one’s
musicality or musical interest, they benefitted even more from the experience. All the
participants affirmed that experiencing music therapy had a positive effect on their overall
experience.
The experience of songwriting did seem to influence all the families’ perceptions of
hospice and the dying process. They all indicated that music therapy increased the quality of life
for their loved one, and it was often said that this also helped the family immensely to see that
their loved one was able to enjoy music therapy. Six of the eight families had a loved one who
worked on a song with the music therapist, while two had a loved one that experienced music
therapy, then became non-responsive and had a song written about them by the family and the
music therapist. Despite these differences, they all responded positively, and the families who
wrote songs about their loved one seemed to indicate that it was especially meaningful to them to
be able to do so. Songs that were written by the patients were perceived as giving the patient
purpose, containing a message, or representing who the patient was in life.
Eight participants provided interviews for this study, and all of them said that the song
affected them in some way, however only four specifically mentioned it when asked about
dealing with their grief or how they remember their loved one. It seems that various
combinations of supports appeared and no single thing was identified as being the most helpful
in bereavement, which is not remarkable given the individualized nature of grief.
Limitations of Study and Implications for Future Research
Due to the small sample size in this study, any generalizations or conclusions should be
drawn cautiously. Additionally, this sample was drawn from families enrolled in a small
midwestern hospice, and all respondents were Caucasian and spoke English as their primary
language. Further studies are needed involving a larger, more diversified participant compilation
to determine any possible differences in perception among various cultural or ethnic groups
across a wider geographical area.
40
For all the families involved in this study, music therapy was an important aspect of their
loved one’s hospice care. These findings are consistent with the research literature, which shows
many positive outcomes are possible for patients in hospice music therapy. Songwriting in
particular seems to be a powerful intervention when it results in a finished product that can be
kept as a remembrance of someone’s life. Although all the families experienced songwriting in
some aspect, additional research is indicated on differences between interventions done solely
with the hospice patient and solely with the family to determine if there is any significant
difference in impact upon the family when the patient writes the song compared with when the
family writes the song. Also, since there were varying levels of involvement by the patients and
families in the actual finished songs, further research is needed to examine whether a difference
in family perceptions is noted if the patient or family has input and helps to shape the entire piece
versus when they only supply the lyrics or only contribute to basic ideas of the melody and
music. In this particular study, families often spoke about the lyrics having significant meaning
or their loved one contributing lyrics to the process; more research is needed to determine
whether the lyrics or the music are more important to families and their experiences.
Additionally, many of the songs referenced in this study were included on a CD which was
released to the general public by the hospice. The possibility for differences in perception
between those whose songs are more widely disseminated in the community versus those whose
are kept private may provide researchers with other areas of inquiry. Further research is needed
in this area of study to develop more sophisticated measures of grief and coping specifically as it
relates to the use of songwriting.
Since many families indicated that a variety of music therapy interventions were used
with their loved one, it also becomes difficult to create distinctions between outcomes from
songwriting versus other hospice music therapy techniques. It is likely that the combination of
music therapy techniques tailored to each patient was a part of the reason the patients and their
families found it to be so effective; it changed as their needs did. Patients’ needs may vary
widely and rapidly through the course of their stay on hospice, so analyzing the effects of one
specific intervention presents challenges to the researcher, because interventions cannot be
excluded for research purposes when they are indicated for the patient.
41
Conclusion
It is concluded that further studies are warranted in the area of songwriting and
bereavement in music therapy. This study showed promising results that the creation of a song
by or for a hospice patient can have a significant positive impact upon the family, their
experience of hospice, and their perception of the end of their loved one’s life. Many family
members made comments regarding hospice helping people to live life to the fullest with dignity,
emphasizing that hospice is just as much about life as it is death. Songwriting remains a versatile
tool in any music therapist’s skill set, but may prove particularly meaningful when utilized with
hospice patients and their families since it can produce a tangible memorial of someone’s life
which enshrines their thoughts within a musical framework.
42
APPENDIX A
Interview Questions
Family perceptions of the patient during the dying process:
Do you have any sense of your loved one’s perception of their hospice experience?
Do you feel like your loved one was given opportunities to make their own decisions while on
hospice care if that was possible?
Do you think your loved one was able to express him/herself while on hospice? Why do you
think that?
Do you think your loved one found comfort?
What are some indications that made you say that?
Family perceptions of hospice:
Tell me about your experience with hospice.
Did your opinions of hospice care change at all during the whole experience?
What caused those changes?
Would you recommend this hospice to someone you know?
In your opinion, what were the best things about hospice care?
Facilitation of grieving and bereavement:
Tell me about your experience since your loved one has passed. What has helped you get
through?
Has anything in particular helped you to deal with ________’s death? Why?
Do you do anything special to remember your loved one?
Did any particular experiences within hospice change how you’ve grieved?
Do you feel as though you’ve found some comfort?
What makes you say that?
Perceptions of music therapy:
Can you tell me what you knew about music therapy prior to your experience with hospice?
How about after?
Why did you choose music therapy as one of the services you wanted as part of you and your
loved one’s hospice experience?
Was it what you expected?
Did music therapy affect your hospice experience?
Do you think it had any effect on your loved one’s quality of life?
43
Why do you think it did?
Did your loved one write a song with the music therapist while on hospice?
What do you think about ______ writing an original song?
How did your loved one’s song affect them, you, and/or your family?
Do you or other family members listen to the song?
If yes, why?
Were you ever present for music therapy sessions?
If so, approximately how many?
Did your loved one describe music therapy sessions to you if you were not there?
If so, what did they say?
Did other family members attend music therapy sessions and tell you about them afterward?
If so, what did they say?
44
APPENDIX B
Human Subjects Committee Approval Letter
Office of the Vice President For Research
Human Subjects Committee
Tallahassee, Florida 32306-2742
(850) 644-8673 · FAX (850) 644-4392
APPROVAL MEMORANDUM
Date: 3/30/2012
To: Jill Anderson
Dept.: MUSIC SCHOOL
From: Thomas L. Jacobson, Chair
Re: Use of Human Subjects in Research
The Effects of Original Songwriting in Music Therapy Sessions on the Hospice Experience and
Bereavement Process of Patients and their Families
The application that you submitted to this office in regard to the use of human subjects in the
proposal referenced above have been reviewed by the Secretary, the Chair, and one member of
the Human Subjects Committee. Your project is determined to be Expedited per per 45 CFR §
46.110(7) and has been approved by an expedited review process.
The Human Subjects Committee has not evaluated your proposal for scientific merit, except to
weigh the risk to the human participants and the aspects of the proposal related to potential risk
and benefit. This approval does not replace any departmental or other approvals, which may be
required.
If you submitted a proposed consent form with your application, the approved stamped consent
form is attached to this approval notice. Only the stamped version of the consent form may be
used in recruiting research subjects.
If the project has not been completed by 3/26/2013 you must request a renewal of approval for
continuation of the project. As a courtesy, a renewal notice will be sent to you prior to your
expiration date; however, it is your responsibility as the Principal Investigator to timely request
renewal of your approval from the Committee.
45
You are advised that any change in protocol for this project must be reviewed and approved by
the Committee prior to implementation of the proposed change in the protocol. A protocol
change/amendment form is required to be submitted for approval by the Committee. In addition,
federal regulations require that the Principal Investigator promptly report, in writing any
unanticipated problems or adverse events involving risks to research subjects or others.
By copy of this memorandum, the Chair of your department and/or your major professor is
reminded that he/she is responsible for being informed concerning research projects involving
human subjects in the department, and should review protocols as often as needed to insure that
the project is being conducted in compliance with our institution and with DHHS regulations.
This institution has an Assurance on file with the Office for Human Research Protection. The
Assurance Number is FWA00000168/IRB number IRB00000446.
Cc: Jayne Standley, Advisor
HSC No. 2012.7593
46
APPENDIX C
Consent Form
FSU Behavioral Consent Form
The Effects of Music Therapy Sessions on the Hospice Experience and Bereavement Process of
Patients and their Families
You are invited to be in a research study of the effects of music therapy sessions upon patients
and their families, both while the patient is on hospice and during the bereavement process. You
were selected as a possible participant because your loved one was enrolled in hospice care and
may have experienced music therapy. We ask that you read this form and ask any questions you
may have before agreeing to be in the study.
This study is being conducted by Jill C. Anderson, Music Therapy graduate student (Florida
State University).
Background Information:
The purpose of this study is: To examine the effects that music therapy sessions have on patients
and their families.
The study will ask questions about:
- The family member and the patient’s experience during hospice music therapy
- The family’s understanding of music therapy
Procedures:
If you agree to be in this study, we would ask you to do the following things:
An in-person interview with the researcher, in which you would answer several questions
regarding you and your loved one’s experience during hospice and music therapy. This interview
would be audio taped so the researcher can accurately record your thoughts for the study without
distractions during the interview. The tapes would be destroyed upon completion of the
researcher’s study. The interview process would take approximately thirty minutes, but may
depend upon how much you wish to share with the researcher. If an in-person meeting is
inconvenient, then the interview may be done by telephone.
If you would like a copy of the final results of this study, you may request them from the
researcher using the contact information below.
Risks and benefits of being in the Study:
47
The study has few risks associated with it. There may be some emotional discomfort in
discussing memories. These risks may vary dependent upon your own personal grief experience
and comfort discussing it. If there is anything you are too uncomfortable to talk about, the
researcher will move on to the next question.
The benefits to participation are sharing your experiences and furthering music therapy research.
Compensation:
There is no compensation for participation in this study.
Confidentiality:
The records of this study will be kept private and confidential to the extent permitted by law. In
any written materials, we will not include any information that will make it possible to identify a
subject. Research records will be stored securely and only researchers will have access to the
records. Audio recordings will be destroyed when the researcher has completed the study.
Voluntary Nature of the Study:
Participation in this study is voluntary. Your decision whether or not to participate will not affect
your current or future relations with the University or with your hospice. If you decide to
participate, you are free to withdraw at any time without affecting those relationships. You may
also choose to not answer any questions you are uncomfortable with.
Contacts and Questions:
The researchers conducting this study are: Jill C. Anderson, MT-BC, and Jayne Standley, Ph.D,
MT-BC, NICU-MT. You may ask any question you have now. If you have a question later, you
are encouraged to contact them at:
Jill C. Anderson
Tallahassee, FL
Dr. Jayne Standley:
phone: 850-644-4565
email: [email protected]
If you have any questions or concerns regarding this study and would like to talk to someone
other than the researcher(s), you are encouraged to contact the Florida State University
Institutional Review Board at 2010 Levy Street, Research Building B, Suite 276, Tallahassee, FL
32306-2742, or 850-644-8633, or by email at [email protected].
48
You will be given a copy of this information to keep for your records.
Statement of Consent:
I have read the above information. I have asked questions and have received answers. I consent
to participate in the study.
__________________
Printed Name
__________________ _________________
Signature Date
49
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BIOGRAPHICAL SKETCH
Jill Christine Anderson was born and raised in Sycamore, Illinois. She earned her Bachelor of
Arts degree in music from Loyola University Chicago. After completing her music therapy
internship at Seasons Hospice and Palliative Care of Chicago, she then earned her board
certification and began working for Healing Hearts Music Therapy in Tallahassee, Florida while
completing her graduate work. She has earned her Hospice and Palliative Music Therapist and
Neonatal ICU Music Therapist certifications. Jill is a member of the Phi Beta Kappa honor
society and a volunteer hotline counselor for 2-1-1 Big Bend.
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