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Music Therapy with caregivers for those with pediatric brain cancer and brain tumors:
A critical review of the literature and recommendations for future programs

Deborah Rizzo, MA, MT-BC, PPMT;

Founder and Executive Director of In Love And Song: A New Jersey Non-Profit

Abstract

Caregivers for those with pediatric brain cancer and brain tumors face significant challenges. During the course of treatment, pediatric brain cancer and brain tumor patients face not just the physical consequences of treatments, but the neurological effects as well. This critical review of the literature examines the effects of Music Therapy on Caregivers, Caregivers for cancer patients, and Caregivers for pediatric cancer patients. A literature review was specifically chosen with the intention of making recommendations for future program planning. Subjects explored include the psychological, physical, and financial impacts of caregiving. Additional concepts include personality traits of Caregivers and multicultural considerations in caregiving. The topics of brain cancer and the use of Music Therapy with patients are also explored. Special attention is given to Music Therapy for Caregivers for those with pediatric brain cancer and brain tumors. Main points under this headline also include Caregiver stressors, similarities and differences in multicultural caregiving, and the limited research available to Caregivers. Additionally, a basic framework for a program for Caregivers for those with pediatric brain cancer and brain tumors has been provided with recommendations on the expansion of the program.

Background

This program was developed after a thorough critical review of the literature on Music Therapy treatment for Caregivers for brain tumor and brain cancer patients. Ideally, the group of 10 participants would be composed of Caregivers for pediatric glioblastoma (GBM) patients. GBM, or glioblastoma multiforme, can be defined as either primary, meaning it has developed without a family history of brain or other cancers, or secondary, meaning as a result of another illness or medication (Song, et. al, 2010). For the purposes of the literature review and the pilot program, candidates would be the primary Caregiver for a pediatric patient with GBM as a primary diagnosis.

 

The brain cancer Caregiving population faces a unique set of challenges in that a patient’s with a malignant brain tumor may also have “alterations in functional status, cognitive status, and the presence of neuropsychiatric symptoms” (Sherwood, Given, Given, Schiffman, Murman, and Lovely, 2004, pg 43). Depending on the area of the primary malignant brain tumor, PMBT, patients may experience alexithymia, an inability to form symbolic representation of emotions (Sifneos, 1973), and lack emotion recognition when the temporal (Schmolck and Squire, 2001; Rose, et al., 2004; Rankin, et al., 2006; Shaw et al., 2007) and frontal regions (Hornak, et al., 2003; Rosen, et al., 2004; Heberlien, et al., 2008) are found to have a malignancy. 

 

Music Therapy can provide a way to help the Caregiver or Caregivers tend to their own emotional needs and revisit a sense of self and identity (Murrant, 2009). Murrant identified five ways in which Music Therapy can be used as a means for communication between patients and families (2009). These included personalized lyric improvisation, patient and family songbooks and autobiographical journals, lyric composition for patient and/or family songs, song diaries and reflections, and song tributes that can be tailored specifically to the needs to Caregivers. Murrant goes on to say that Music Therapy has been shown to empower the Caregiver using six themes: joy, comfort, relief from distress, sense of meaning, aesthetic beauty, and peace.

Objective

The objective of this literature review is to identify any gaps in research and to create a pilot program specifically for Caregivers for pediatric brain tumor and brain cancer patients.

Method

In the course of this literature review, it was imperative to define the role of a Caregiver and identify the physical, financial, and psychological impacts of caregiving, analyze the personality traits of Caregivers, classify the role of spirituality and multicultural factors in Caregiving, and determine what resources were available both in person and online for Caregiver support. 

 

Once the traits and stressors of Caregivers were identified and defined, the literature review focus shifted to Music Therapy and the following: cancer, brain cancer, pediatric brain cancer and brain tumors, Caregiving, and Caregiving for those with pediatric brain cancer and brain tumors.

Findings

For the purposes of this literature review, a Caregiver is defined as a non-medically trained person or persons who offer compassionate care for a dependent person with an illness (Last, 2007; Martin and McFerran, 2014). A Caregiver can be a relative, such as an adult child, friend or someone non-related, spouse, or other family member of the person in need of assistance. Caregivers typically receive no monetary reimbursement for their time and perform their duties in lieu of employment or before and/or after performing at their place of primary employment. Caregiving tasks may include and aiding with activities of daily living such as hygiene, toileting, and food preparation, housekeeping, financial reimbursement including and not limited to paying bills and supplying financial aid when needed, emotional support, making medical appointment, supplying transportation, and basic medical responsibilities of simple wound care following a medical procedure or hospital stay at home or any other necessary setting (DesRoches, Blendon, Young, Scoles, and Kim, 2002). 

 

Medically trained Caregivers are seen as doctors, nurses, and/or those who have a history of education and training in the field of medicinal caregiving. Medical Caregivers are not typically related to the patient and are monetarily compensated for their time and collective expertise. 

 

The physiological impact of Caregiving was explored using stress, anxiety, Caregiver burden, depression, emotional and physical fatigue, insomnia, burnout, social isolation, PTSS, and PTSD as major factors.

Stress

 

A large source of stress for Caregivers are behavior problems by those receiving care (Lecavalier, Loone, and Wiltz, 2006). These behaviors can also lead to a Caregiver feeling “trapped” within their role and increasingly overwhelmed and overloaded by their duties (Gaugler, Dadvey, Perlin, and Zarit, 2000). When Caregivers become more overloaded with their caring duties, they frequently find themselves with less energy and time to care for themselves (Schulz &Beach, 1999; Shaw, et al., 1997). 

 

Stress related to behavior problems is directly disputed by Mioshi, Bristow, Cook, R., & Hodges (2009). Mioshi found that behavior problems were not directly linked to dress, but rather to depression (Mioshi, et al., 2009). Mioshi et al’s findings imply that Caregivers will find themselves under duress regardless of whether the patient is living at home or in a medically supervised setting. These findings also implicate that Caregiver behavior may be more tied to depressive symptoms than stress. 

 

Anxiety

 

General anxiety and the effects on cognition are discussed by Vytal, Cornwell, Arkin, & Grillon (2012). Vytal, et al (2012) describe the PRocessing Efficiency Theory, originally developed by Eysench and Calvo (1992) as a maladaptive coping skill utilized by the brain where worry and anxiety diminishes the ability for the brain to create memories in times of stress. Memory suffers due to the high volume of stress. 

 

The presentation of anxiety can also be characterized by hypervigilance. Anxious individuals develop hyper vigilance as a maladaptive behavior because of a high sensitivity to threat (Richards, et al, 2014). It was concluded by Eysenck (1992) that those with anxiety scan their environments for perceived threats more than those with less anxiety. 

 

In Korea, it was found that anxiety is more closely related to financial obligations and quality of life issues (Park, b., Kim, Shin, J., Sanon-Fisher, Shin, D.W., Cho, Park, J., 2013a). The findings also showed that 38.1% of Caregivers reported experiencing anxiety, with 20.3% experiencing mild anxiety, 13.3% reporting moderate anxiety, and the remaining 4.6% experiencing severe anxiety (Par, et atl, 2013a). The data were measured by the Hospital Anxiety and Depression Scale. 

 

In studying Caregiver burden, Mausbach (2014) used a Zarit Burden Interview as a scale to measure burden over time for those with dementia. 50-58% of those interviewed reported an 8% increase in mild-moderate burden by the 12-month assessment, and an increase of 14.7% to 22.8% of burden increase overall during the same time period (2014). vanRyn (2010) was able to conclude that a majority of Caregivers were white females approximately the age of 65 who were caring for a spouse to whom they were married (DesRoches, 2002). Another Korean study focused on Caregivers for oncology patients found that a majority of Caregivers, approximately 67%, had high scores of depression (Rhee, Yun, Park, Shin, Lee, Yoo, and Kim, 2008). The same study noted that Caregivers that were most likely to have depression were women who were caring for an ill spouse, who were feeling burdened, were in poor health themselves, with poor ability to adapt and an inability to perform the functions of daily life.

CycleOfAnxiety.png

The cycle of anxiety of negative behavioral effects and the Caregiver

Depression

 

Caregiver burden is linked to depression (Gaugler, et al, 2009). The same study found that 25-40% of Caregivers are depressed. A 2013 study by Clark, Nicholas, Wassira, and Guitierrez found an increased rate of Caregiver depression at 25-50%. The following year, Mausbach found that the duration of care given by long-term Caregivers, defined as those who provide 14 or more hours of care, is not a risk factor for depression. 

 

It is also worth nothing that African American Caregivers reported a lower rate of depression that Caucasian American Caregivers and also reported less burden (Bekhet, 2015). African American participants in Bekhet’s research (2015) also reported their stress as being “benign” (p. 290). A Brazilian study found that Caregivers who experienced depression were among the poorest participants (Ner, et al, 2012).

 

A survey conducted in Korea found that Caregivers who were diagnosed with anxiety had a higher rate of suicidal ideation at 31.9% than a family Caregiver with depression at 20.4%. In a similar fashion, Caregivers with anxiety also had a higher rate of attempted suicide at 4.7% than those with depression, who rated at 3.3%. Becoming unemployed during the caregiving process also dead to a higher risk for suicide ideation and attempt, most notably in those diagnosed with anxiety. The group with the highest risk for suicidal ideation were unmarried females who became unemployed while caregiving and experienced a low quality of life. Those diagnosed with depression were more likely to attempt suicide if they were unmarried and experienced a low financial quality of life (Park, et al, 2013).

NeedForIntervention.png

Illustrating the need for psychological interventions for Caregiver

Physical Fatigue

 

Physical fatigue, also known as peripheral fatigue, is linked to other symptoms, such as insomnia and depression (Roepke, et al, 2009). It was reported that 75% of Caregivers experience chronic fatigue. Roepke (2009) found similar results in that Caregiver fatigue scores averages 18.1% higher than those with a higher level of mastery. Those who had a higher level of mastery over their fatigue were found more likely to feel “energetic, lively, and cheerful regardless of Caregiver status” (Roepke, 2009, p. 6). Similar results were found in response to emotional fatigue as well (Roepke, 2009).

Emotional Exhaustion

 

Being emotionally depleted of resources can be detrimental to a Caregiver’s relationships. Liang’s study (2014) explored the hypotheses that family-work conflict (FWC) and work-family conflict (WFC) could be partially explained by spillover. Liang explained that if an employee was emotionally exhausted at work, that stress would spill over into the employee’s life in a non-work environment. The same idea would be applied to FWC. Liang (2014) further made the correlation between an employee’s emotional exhaustion and the stress level of the employee’s spouse. It was explained that the spouse of the employee often takes on the stress of the employee. 

 

To help ward off the emotional exhaustion, it has been reported that professional Caregivers often turn to “hope” (Sherwin, Elliott, Rybarczyk, Frank, Hanson, and Hoffman, 1992). Sherwin, et al (1992) also stated that nurses who found a sense of purpose in their work were less likely to be emotionally depleted. It was said that hope provided a type of “fuel” (p. 137) for the nurses to continue without feeling emotionally exhausted. Longterm Caregivers who see themselves as hopeful also consider themselves better problem solvers in addition to being ore resourceful. This mindset is also associated with a lower rate of emotional exhaustion (Sherwin, et al, 1992).

WorkFamilyConflict.png

Illustrating Liang’s 2014 model of work-family conflict using Caregivers

Social Isolation

 

Social isolation is frequently found in the Caregiver community. According to Neri’s findings (2012) on older Brazilian Caregivers, three or more hobbies or activities outside the house were discontinued by 50% of the participants. Over 37% had stopped one or two activities. Though the study had a significant amount of female participants, nearly 70%, Neri found that the male Caregivers ceased more activities than their female counterparts. It was also found that younger participants stopped fewer activities than those of a more advanced age (Ner, et al, 2012). 

 

To counter this point, Robison, et al (2009) reported that a lack of adequate financial resources ia  greater cause of social isolation in addition to depressive  symptoms and health problems when the Caregiver is also living with the patient. Robison also reported that Caregivers assessed their health better than those who were non-Caregivers. 

 

The Friendship Scale, or FS, was created by Hawthorne in 2006 and is composed of six items to measure social isolation. There are five levels of perceived social isolation ranging from very socially isolated to a high level of social connectivity. The results showed that the Caregivers sampled in Hayes’ study (2015) were 9.3 times more likely to report being socially isolated tha in Szmukler’s 1996 study. 

 

PTSD


As of the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), published in 1980, a parent caring for a child with cancer can be diagnosed with Post Traumatic Stress Disorder, commonly called PTSD (Manne, 2005). As of the DSM-5, the diagnosis of PTSD for parents caring for a child with cancer is still used. Once reserved for witnesses to violent crimes or those who witnessed serious injury, the inclusion of parental Caregivers broadens the parameters of events that would fall under PTSD. It speaks to the parent or parents’ protective instinct and parental responses to a child’s diagnosis and treatment (Manne, 2005). This is suported by Frank, Brown, Blount, and Bunke (2001) who utilize/introduce the term late-effects. Late-effects is defined as the effects of cancer, typically within two years of the final treatment of either chemotherapy or radiation. For parents, late-effects can manifest in symptoms of PTSD (Frank, et al, 2001). 

 

Physical Impact of Caregiving

 

Caregivers frequently face physical strain regardless of age. As reported by Chang, Chiou, and Chen (2010), the physical ailments of caregiving have received less focus than psychiatric ailments. If there was poor mental health, physical health was found to be poor as well. Douglas and Daly (2003) found that the health of elderly Caregivers declined 6 months post-hospitalization from 17.8% of Caregivers in poor health to 29%. In research performed by Gover (2006),  it was shown that strong associations were present between physical health of a Caregiver and the Caregiver’s levels of anxiety and depression. 
 

Financial Impact of Caregiving

 

Out of the 17 cancers listed by the Journal of the National Cancer Institute, the least expensive form of cancer is melanoma at $92,399 for a woman under age 65. The most expensive form of cancer is that of the brain. Using the same sources information, a man under the age of 65 faces an average cost of treatment of $417,014. Over 65, the same range of treatment averages $326,842 (Mariotto, et al, 2010). The Brain Tumor Foundation (2024) lists the average cost of brain tumor treatment from diagnosis through surgery, treatments, rehabilitation, and hospice to amount between $700,000-$800,000. The average amount of Social Security Disability Insurance as of May 2024 is $1,707.57 per month. Under the assumption that the patient is able to meet their basic living requirements independently and can put their SSDI toward medical repayment on a $700,000 cost of treatment, the patient would be paying for 410 months, or over 34 years. With an $800,000 cost of treatment, the patient would be paying for 468.5 months or just over 39 years. Under Medicare Part B, medicare.gov notes that the patient may be liable for up to 20% of the approved amount for treatment, not including hospital costs.

The average annual income from Social Security in 2010 was $13,980, or $1,165 per month. The average annual income from Social Security in 2024 is $20,484, or $1,707 per month- a 54% increase from 2010. The cost of brain tumor treatment has increased from $417,014 in 2010 to over $700,000 in 2024- a 68% increase in cost.

Personality Traits of Caregivers

 

Neuroticism, extraversion, conscientiousness, openness, and agreeableness are five personality traits commonly found in Caregivers (Lockenhoff, Duberstein, Friedman, & Costa, 2011; Tew, Naismith, Pereira, & Lewis, 2013). Neuroticism was the only trait found to have negative attributes, such as feeling easily overwhelmed in stressful situations and a tendency to have worse physical and mental health (Lockenhoff et al, 2011). Caregivers with neurotic tendencies tend to have a higher rate of Caregiver burden (Coi and Kim, 2008). The same study found that the Caregiver’s neurotic tendencies attribute to as much as 19% of Caregiver burden. What remains to be seen is if the previously mentioned personality traits have an impact on the Caregiver’s quality of life (Tew, et al, 2013). Personality is viewed as important to give a further understanding of a Caregiver’s psychological profile. It remains to be seen if personality either decreases vulnerability or offers protection (Tew, et al, 2013).

 

Spirituality and Multicultral Factors of Caregiving

 

African American Caregivers listed God or religion as a consistent source of strength and social support. It was found that the same population found hope and spiritual growth as a family through faith in God (Pierce, 2001). Similar results were found within Latina Caregivers. Spiritual and religious activities were thought to buffer the effects of stress on the Caregivers. It also enhanced social integration, social support, and a relationship with God (Sun and Hodge, 2014). 

 

There is also a difference in perception of burden between African American Caregivers and Caucasian American Caregivers. According to Bekht (2015), Caucasian American Caregivers report higher levels of anxiety, depression, and hostility than African American Caregivers. Caucasian American Caregivers also reported a higher rate of clinical depression with rates more than twice that of African American Caregivers (Bekhet, 2015). In contrast, there were fewer Caregivers who were from Asia with a high rate of Caregiver burden at 39%. (Yuen Oi Choong, Nyu, Zhang, Lim, Silva, & Kandiah, 2014). However, unemployed Asian Caregivers reported a high rate of burden at 98% (Yuen Oi Choon, et al, 2014). It was also found that a majority of Asian Caregivers living with the patient experienced mild burden, 77%, or medium burden, 20% (Chan, Poon, Townsend, Xu, Lian, & Koo, 2007). 

 

Most research, as was highlighted by Frank, et al (2001), focused on the caregiving experience of the female or maternal figure. It was found that mothers reported more negative affective responses and psychological distress than fathers (Kovaces, et al, 1985; Goldberg, et al, 1990). It was also found that mothers with surviving children displayed more symptoms of PTSD in the late-effects time period than a control group, whereas the fathers showed no discernable difference (Kazak, et al, 1997). 

 

In-Person Support Groups

 

It is important to note, specifically in this section, that there is a marked difference between the terms “support group” and “therapy group.” Support groups focus on sharing ideas and experiences. Therapy groups focus more on behavioral changes. 

 

Support groups, according to the American Cancer Society (2013), “are comprised of individuals and/or their family members who meet under the leadership of a health care of mental health professional” (p.8). Cancer support groups have origins in the 1970’s, when healthcare providers acknowledged that support groups were not intended to replace treatment, but rather to foster relationships built on the cancer experience (American Cancer Society, 2013). In-person support groups have provided an open forum for Caregivers to share coping strategies, feelings, and ideas (American Cancer Society, 2013). 

 

Online Support Groups

 

Dickerson (1998) charged that online support groups are built upon many of the same three tenants as empowerment: being reliant on oneself and one’s peers to increase self-efficacy, a feeling that free will is encouraged by voluntary participation and free choice, and that social engagement is linked to both helping and socially identifying with others. The idea of empowerment in online support groups was one that was explored by Barak, et al, (2008). In addition to Dickerson’s findings, Barak claimed that the therapeutic value in writing, in expressing one’s true inner feelings, can lead to catharsis, emotional relief, and a sense of control. 

 

Music Therapy and Cancer

 

Research has indicated that music therapy is an effective type of supplemental treatment for individuals with cancer (Pichler and Pichler, 2014; Logis and Turry, 2012). Music Therapy has been applied during various phases of treatment, ranging from preliminary testing to chemotherapy (Pichler and Pichler, 2014). Pichler and Pichler (2014) discussed the use of music therapy and its application in reducing anxiety prior to cancer screening, such as women undergoing a mammogram and in men undergoing a prostate biopsy. Enhancements in anxiety, depression, quality of life, coping, stress, anger, and mood were noted as emotional improvements in the research. It was also noted that physical aspects of life and physical functioning were unaffected by Music Therapy (Pichler and Pichler, 2014).

 

Cancer patients can also experience feelings of isolation and depression (Bailey, 1984; Pichler and Pichler, 2014). To aid in the exploration of these feelings, Bailey identified and discussed nine ideas or themes that were common in Music Therapy sessions with cancer patients. They were hope, pleasure, the world, reminiscence, relationships, needs and desires, feelings, loss and death, and peace. Songs of hope frequently referred to inner strength and made religious references. Interestingly, songs about loss and death did not share the same religious context, but rather focused on calming anxieties. Suggested songs in this category included “Danny Boy,” “Eleanor Rigby,” and “Mr. Bojangles.” Songs of peace, such as the suggestion “My Way,’ may be representative of a patient or family member’s feelings of acceptance toward death (Bailey, 1984). 

 

Chuant, Han, Li, and Young (2010) state that Music Therapy and its use with cancer survivors is not well researched. The study also noted that Music Therapy was not popular in Taiwan due to the shy nature of the Taiwanese people. 

 

In terms of Music Therapy and children with cancer, one pilot study found that Music Therapy decreased anxiety and increased the feeling of comfort in a hospital setting. The parents of the children noted that play activity, including social interaction, of the children increased following a session (Carrera, Rykov, and Doyle, 2002). 

 

Music Therapy and Brain Cancer

 

Following an extensive literature search, there appears to be very limited research specifically on the application of Music Therapy and brain cancer. While there is little research in this specific area, some research has been conducted with Music Therapy and those with Traumatic Brain Injury, or TBI.

 

An acquired brain injury is one where there are no biological factors. An acquired brain injury is frequently a result of trauma due to a head injury or postsurgical damage, a stroke indicating a vascular accident or hemorrhage, hypoglycemia, or an infection, or inflammation (Bradt, Magee, Dileo, Wheeler, and McGilloway, 2010). Results of an acquired brain injury can effect motor function, lagnuage, cognition, and sensory processing, in addition to emotional disturbance. Music therapy has been used to improve gait, reduce pain through music listening and singing, and to discuss the emotional needs and sense of wellbeing in the patient (Bradt, Magee, Dileo, Wheeler, and McGilloway, 2010). Examples of Music Therapy interventions include movement and listening to live or pre-recorded music, the creation of live music, spontaneous vocal and/or instrumental improvisation, singing and/or sound production, speech and language occurrences that are based in music, songwriting, and music used in conjunction with imagery and art (Bradt, Magee, Dileo, Wheeler, and McGilloway, 2010). 

 

The effects of live music on patients undergoing invasive brain surgery for cancer and other ailments was studied by Walworth, Rumana, Nguyen, and Jarred (2008). They found that live music sessions prior to cranial surgery and once daily for the duration of the hospitalization decreased anxiety and stress levels, and increased the patients’ perception of hospitalization and relaxation during recover (Walworth, Rumana, Nguyen, and Jarred, 2008). Quality of life indicators indicated decreased anxiety, pain and stress, and indicated increased relaxation, perception of hospitalization, and mood for the experimental group, indicating teh changes were incurred by Music Therapy (Walworth, Rumana, Nguyen, and Jarrod, 2008). 

 

Music Therapy And Pediatric Brain Cancer

 

A study by Kiley (2012) discusses the effect of a single music and imagery session on oncology patients during outpatient chemotherapy. Of the twenty-three patients involved in the experiment receiving care at Tallahassee Memorial Healthcare, twelve were randomly assigned to the experimental group and received Music Therapy and eleven were assigned to the control group and did not receive Music Therapy. During the single session, questionnaire results noted that the tension and anxiety found in the experimental group decreased during the post-tests. The control group found no statistically significant different in the pre- and post-tests. The research indicates that Music Therapy may be an effective supplemental treatment for anxiety and tension in those receiving outpatient chemotherapy (Kiley, 2012). 

 

Music Therapy and Caregiving

 

It was found that the Music Therapy support groups used the unique benefits of Music Therapy, supported interactions with other group members, and lead to essential skills such as leadership. These skills helped patients find positive effects in their physical, psychological, and social health (Dvorak, 2015). Over thirty years prior, Bailey (1984) found that through participating in a group, the Caregivers and patients alike were less socially isolated, which was one of the chief complaints of both groups. Magill (2009) noted that Music Therapy brought about six themes when used in conjunction with Caregivers and patients: joy, comfort, relief from distress, sense of meaning, aesthetic beauty, and peace. The themes came about through shared communication and interpersonal interactions between the patient and the Caregiver (Magill, 2009). 

 

Mausbach (2014) also described a possible mentality of Caregivers as the following:

“It appears, then, that left to their own devices, Caregivers are not adapting to their roles over time. Rather, they appear to remain at risk for elevated depressive symptoms over time, highlighting the need for services that can effectively help prevent or reduce depressive symptoms.”

 

Music Therapy And Caregiving For Those With Pediatric Brain Cancer

 

The author was unable to find any articles pertaining specifically to Music Therapy and Caregiving for those with pediatric brain cancer and brain tumors. While there are articles about Music Therapy with Caregivers, Music Therapy with general pediatric cancer, and Music therapy with Caregivers for those with cancer, there have been no studies done to the best of the author’s knowledge to encompass Music Therapy and Caregivers for those with pediatric brain cancer. This is a significant gap in the research. 

 

After reviewing many articles on GBM and Music Therapy, it was ascertained that little research has been conducted which specially addressed the combination of GBM, Caregivers for the pediatric population, and Music Therapy. No research has been found that encompasses the three topics, highlighting a sizable research gap.

Conclusion

The research gap is sizable, as no research has been performed with Music Therapy and Caregivers for the pediatric brain tumor and brain cancer populations. More research needs to be conducted to see if Music Therapy can help increase interpersonal interactions and to help alleviate depressive symptoms.

Program

In 1984, Bailey identified nine themes with cancer patients, such as hope, pleasure, the world, reminiscence, relationships, needs and desires, feelings, loss and death, and peace. In this twelve week pilot program, each topic would be explored, allowing for one week and rapport building among the Caregivers, one week for the termination of the program, and one week to continue discussions from a previous session or sessions. Ideally, the program would take place in a hospital setting so the Caregivers would not need to travel far from the patient in order to attend the group. Caregivers would need to complete the Beck Depression Index prior to the first session.

 

Goals for the group include increased awareness of self-care, and increased creative self-expression in relation to hope, pleasure, the world, reminiscence, relationships, needs and desires, feelings, loss and death, and peace. Other goals would be to increase interpersonal interaction and decrease isolation and depressive symptoms, pervasive themes found throughout the research. 

 

Week 1

The first session would focus on building rapport and a general introduction to Music Therapy. The Caregivers would be introduced to the instruments and each other. An introduction to self-care would also take place. Self-care would be defined. Possible musical interventions include instrumental improvisation as a group and in pairs to increase social interaction and a short, guided relaxation focusing on breathing to aid in stress relief. Bailey’s (1984) model would be introduced and the topics of hope, pleasure, the world, reminiscence, relationships, needs and desires, feelings, loss and death, and peace would be brought to the group. In closing, Caregivers would be asked what they could do for self-care during the week.

 

Week 2

The second week of the program would begin with a check-in using a modified Likert Scale with the Caregivers rating their stress level on a scale of 1 (low) to 5 (high) and to see if/how they were able to engage in self-care during the week. An instrumental improvisation would follow as a form of assessment and warm-up. Caregivers would be assessed on organization, social interaction, and participation. A song speaking to hope would be presented to the group and Caregivers would be encouraged to play and sing along. A song of hope, for example, would be “Eye of the Tiger” by Survivor or “If I Had A Hammer” by Peter, Paul, and Mary. Lyric analysis would follow. If time permitted, the song would be revisited. Caregivers would be asked if there were any songs that represented the next week’s theme of pleasure and held meaning for them. Those songs would be written down, learned by the Music Therapist, and made available fo the next week’s session. At the conclusion of the group, the Caregivers would once again be asked what they would do for self-care for the week and be asked to use the Likert Scale to rate their level of stress at the end of the group.

 

Week 3-

The third week of the program would begin with a check-in using a modified Likert Scale to rate their level of stress. During the check-in, Caregivers would also be asked how they were able to engage in self-care during the week and what techniques were used. An instrumental improvisation would follow to increase social interaction as a group and in pairs and as an assessment of the group. The idea of pleasure through music would be presented to the group. Another option would be to provide a song list to the group members and to let them choose a song as a group that would speak to Bailey’s idea of pleasure. The song list would be composed of songs that the Caregivers had suggested during teh previous week. The group would play and sing the chosen song. Verbal processing would follow. If time permitted, the song would be revisited. Group would conclude with each Caregiver naming what they hoped to do for self-care during the week and to rate their stress level using a modified Likert Scale.

 

Weeks 4-10-

The fourth, fifth, and all subsequent weeks, would begin the same as the previous weeks: Each Caregiver would rate their level of stress on a modified Likert Scale and talk about the self-care done during the week. This process will be known as The Opening. It would be followed by an instrumental improvisation that would serve as an assessment of the group and as a warm-up. As was included in the previous weeks, the group might be presented with a song or a list of songs pertaining to the theme of the week in the following order: the world, reminiscence, relationship, needs and desires, feelings, or loss and death. Other improvisational techniques, such as vocal improvisation, would be used to explore different themes. Additional possible interventions include lyric substitution to provide the Caregivers with structure before the idea of songwriting is introduced to help the Caregivers represent their personal experience of providing care. The idea of writing a song to summarize the experience of the group would be introduced and the brainstorming of ideas would ensue, as would discussion on the structure of the song and what form the song would take. Group would conclude with each Caregiver naming what they could do for self-care during the week and to rate their stress level using a modified Likert Scale.

 

Week 11

Week 11 would have a similar structure as the previous 10: The group would begin with the opening and transition to the improvisation. This session would also be used to finish any topics that had not been completed during the prior weeks. The idea of termination would be brought up to the group followed by verbal processing. The closing would commence.

 

Week 12

Week 12 would be the last week of the pilot program. The opening would ensure. The idea of termination would, again, be brought up to the group and, after verbal processing, the songwriting from the previous week would continue. If the group finished the songwriting, songs from previous weeks would be explored once more. At the group’s conclusion, the Caregivers would be asked to rate their closing stress levels on a scale of 1 (low to 5 (high) and how they planned to engage in self-care during the week. In lieu of a typical closing Caregivers would speak about how they plan to continue self-care. In addition to rating their current stress level on a modified Likert Scale, Caregivers would be asked to aslo rate their level of stress at the end of the pilot program as opposed to the beginning of the sessions. Caregivers would also be asked to take the Beck Depression Index in addition to an exit survey at the end of the session so that the program could be modified if it were to continue. 

 

In conclusion, the 12-week Music Therapy pilot program for Caregivers of those with pediatric  brain cancer and brain tumors would focus solely on the needs of the Caregiver. Due to the limited research on Music Therapy and Caregivers and the extremely limited research on Music Therapy  for Caregivers for those with pediatric brain cancer and brain tumors, this program offers a unique opportunity for Caregivers to take a step back from their role of providing care and make the journey from Invisible Patient to Identified Patient. The intended outcome of this program is to help the Caregivers develop coping skills and self-care routine, in addition to increasing socialization and providing a normalizing experience that would be of service outside of a therapeutic setting. These skills could be utilized at home, at the patient’s bedside, at a doctor’s appointment, or any other place or time where the Caregiver feels stressed.

How reduced Caregiver stress may lead to better Patient care after the 12-week Pilot Program

Definitions

Alexithymia- The inability to form symbolic representation of emotions

 

Anxiety- “...a normal inborn response either to threat- to one’s person, attitudes, or self-esteem- or to the absence of people or objects tat assure and signify safety (Kandel, p. 1277, 1983)

 

Behavior Problems- Disruptive, annoying, and inappropriate behaviors resulting in social consequences for the Caregiver (Gaugler, Davey, Pearlin, and Zarit, 2000)

 

Caregiver- A non-medically trained person or persons who offer compassionate care for a dependent person with an illness (Last, 2007; Martin and McFerran, 2014)

 

Caregiver Burden- “Encompassing the physical, psychological, emotional, social, and financial stresses that individuals experience due to providing care (George and Gwyther, 1986).” 

 

Depression- Extended period of sadness (Ingram, 2009); loss of interest in activities, weight loss or weight gain, insomnia or hypersomnia, fatigue or loss of energy, feelings of worthlessness or unsubstantiated guilt, lack of concentration, and recurring thoughts of death lasting for two weeks or more (American Psychiatric Association, 2013)

 

Emotional Exhaustion- Emotional depletion due to the demands of a job (Wright and Cropanzano, 1998)

 

Fatigue- Lack of energy, either physical or mental, by the Caregiver that limits the Caregiver’s desired activities (Multiple Sclerosis Council for Clinical Practice Guidelines, 1998)

Hypervigilance- The state of readiness to guard against any potential threat (Eysench, 1992)

 

Glioblastoma- Glioblastoma Multiforme; GBM abbreviation; Stage 4 brain cancer; GBM has a median overall survival rate of 43 months, or 3 years and 9 months, in children

 

Late-Effects- The effects of cancer, typically within two years of the final treatment of either chemotherapy or radiation; For parents, late-effects can manifest in symptoms of PTSD (Frank, et al, 2001)

Medical Caregiver- A person with a history of education and training in the field of medicinal caregiving; typically not related to the patient; monetarily reimbursed for their time and collective expertise; examples: doctors and nurses

 

Music Therapy- The American Music Therapy Association defines Music Therapy as the following:

“Music Therapy is the clinical & evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. Music therapy interventions can address a variety of healthcare & educational goals:

  • Promote Wellness

  • Manage Stress

  • Alleviate Pain

  • Express Feelings

  • Enhance Memory

  • Improve Communication

  • Promote Physical Rehabilitation

  • and more”

 

Processing Efficiency Theory- A type of memory loss caused by stress (Eysench & Calvo (1992); takes place during executive processing when maladaptive or worrisome through overcome high-load task performance (Vytal, et al, 2012; Eysenck, et al, 2007)

 

Post-Traumatic Stress Syndrome- PTSS; “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures and invasive or frightening treatment experiences” (National Child Traumatic Stress Network, 2003, p. 17)

 

Religion- An external process, relating to an organized, public, and formal framework (Farran, Paul, and Elliott, 2003)

 

Spirituality- An internal process relating to reflection, private prayer, transcendence, inner strength, meaning, and purpose (Farran, Paun, and Elliott, 2003)

 

Stress- Any demand that poses a threat to the physical and/or emotional state of a living organism (Churchill Livingstone’s Dictionary of Nursing, 2006); a physical and emotional state of overexertion (Robinson and Davidson, 2001)

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