Music Therapy in an Integrated Pediatric Palliative Care Program

American Journal of Hospice & Palliative Medicine1 Volume 26 Number 6 December 2009 449-455 # 2009 The Author(s) 10.1177/1049909109341870 http://ajhpm.sagepub.com

Caprice Knapp, PhD, Vanessa Madden, BSc, Hua Wang, MS, Charlotte Curtis, RN, Phyllis Sloyer, PhD, and Elizabeth Shenkman, PhD National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida’s Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents’ experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used

music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.

Introduction

might be the most important in evoking emotions that are difficult to express.3,4 A number of studies have been conducted to describe the effect of music therapy in adults with terminal illnesses.5-7 For example, one study found that patients who received music therapy had improved anxiety, mood, pain, facial expressions, and body movement.8 Another study found that these patients who received music therapy experienced decreased levels of agitation and wakefulness.9 Several other studies have been conducted to document the effects of music therapy on oncology patients.1012 One of these studies assigned 80 patients to control and treatment groups based on their receipt of music therapy, and the findings suggest that the treatment group had a higher health-related quality of life.12 To our knowledge, few studies have been conducted that focus on the use of music therapy for children. A 2008 qualitative study captured the experiences of 7 bereaved parents whose children, aged 5 months to 12 years, received music therapy in a community-based palliative care program.13 The authors identified 5 overarching themes: (1) music therapy is a valued service, (2) music therapy was important in remembrance, (3) music therapy was

Historically, music has played an important role in medicine, particularly in medical care provided to patients with life-limiting illnesses. Patients with life-limiting illnesses often have a difficult time coping with perceived present and future losses, and music has been shown to help alleviate those feelings.1 Music therapy can affect a patient’s emotional, social, spiritual, and physical states. As described by Clements-Cortes, there are 6 primary applications of music therapy in palliative care: songwriting, song choice, singing, analysis and discussion of lyrics, improvisation, and playing of instruments.2 Each application invokes different responses; however, several studies have suggested that improvisation

Departments of Epidemiology and Health Policy Research, University of Florida, Gainesville, Florida (CK, VM, HW, ES); and Florida Department of Health, Children’s Medical Services Network Division, Tallahassee, Florida (CC, PS). This research was supported in part by a University of Florida Faculty Enhancement Opportunity award given to the first author. Address correspondence to: Caprice Knapp, 1329 SW 6th Street, Room 5130, Gainesville, FL 32610; e-mail: [email protected].

Keywords: Medicaid

children; palliative care; music therapy;

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an important service for both children and families, (4) communication was improved by music therapy, and (5) parents made recommendations for improving music therapy. A second study showed that singing accompanied by pentatonic harp music reduced the stress level of premature infants whose gestation period was 23 to 36 weeks.14 Although these studies provide valuable insights, they are not focused on children at different stages in their illnesses. This is important, given that comprehensive and integrated pediatric palliative care programs have been developed to address the needs of children with life-limiting illnesses earlier in their courses of illnesses.15-19 Experts from the American Academy of Pediatrics (AAP) and the Institute of Medicine (IOM) recently released reports calling for the integration of pediatric palliative care into ongoing medical management from the point of diagnosis to the end of life.20,21 As a result, more appropriate models of integrated pediatric palliative care have been implemented. For example, Florida has operated this model of care for publicly insured children called the Partners in Care: Together for Kids (PIC:TFK) program in 7 sites across the state since 2005. Yet, no studies exist that investigate the experiences of children with life-limiting illnesses, with music therapy in these types of integrated programs. Given the lack of information on music therapy in pediatric palliative care, the primary purpose of this study was to investigate children’s use of, and parents’ satisfaction with, music therapy services. In addition, this study uses multivariate analyses to determine whether the use of music therapy is associated with programmatic satisfaction or quality of care. Information derived from this study will be crucial for pediatric palliative care program leaders to decide whether to include music therapy in their service package and to understand the challenges associated with meeting the demand for these services.

Methods Sample Study participants were parents of children aged 1 to 21 years who were enrolled in Florida’s PIC:TFK program. A primer letter was sent to 354 parents in August 2008. Telephone surveys were conducted in English and Spanish between September 2008 and October 2008. One hundred and thirty-one of the

potential participants had invalid contact information. Overall, 140 surveys were completed (response rate 62.8%). Administrative data were merged to the telephone survey data to determine whether there were inherent differences between parents who did and did not respond to the survey. The University of Florida’s Institutional Review Board approved this study.

Outcome Measures The survey asked a series of 7 questions about the parents’ use of, and satisfaction with, music therapy. In addition to describing the results of those questions, this study estimates the relationship between using music therapy and overall parent-reported satisfaction and quality of care in the PIC:TFK program. Parents were asked how satisfied they were with the PIC:TFK program overall and the response categories were ‘‘very satisfied,’’ ‘‘satisfied,’’ ‘‘neither satisfied nor dissatisfied,’’ ‘‘dissatisfied,’’ and ‘‘very dissatisfied.’’ A binary variable was created from the responses and set equal to 1 if the parent reported that they were ‘‘very satisfied’’ or ‘‘satisfied,’’ and 0 otherwise. Second, parents were asked to rate the overall quality of care that their children receive in the PIC:TFK program and the response categories were ‘‘excellent,’’ ‘‘very good,’’ ‘‘good,’’ ‘‘fair,’’ and ‘‘poor.’’ A binary variable was created from the responses and set equal to 1 if the parent reported that the quality of care was ‘‘excellent’’ and 0 otherwise.

Predictors When estimating the relationship between using music therapy and parent-reported satisfaction and quality of care in the PIC:TFK program, several predictor variables were also included in the multivariate analyses. Demographic questions were included such as child’s age, child’s race/ethnicity (white, non-Hispanic, black, non-Hispanic, Hispanic, and other race/ethnicity), child’s gender, child’s language primarily spoken at home (English, non-English), parent’s educational attainment (less than high school, high school graduate, some college, and college graduate), and household type. Administrative data on the child’s stage of illness (early, mid, and end of life) were merged to the telephone survey data. Stage of illness was determined by each child’s assigned nurse and was defined as early—within

Music Therapy in Pediatric Palliative Care Program / Knapp et al 451

Table 1. Summary Statistics Number Child’s gender Female Child’s primary language English Child’s race/ethnicity Hispanic White, non-Hispanic Black, non-Hispanic Other race Parent’s education Less than high school High school graduate Some college College graduate Household type One parent Child’s stage of illness Early Mid End of life Child’s age

Percentage

68

48.6

87

62.6

37 70 21 12

26.4 50.0 25.0 8.6

19 34 46 37

13.6 24.3 32.9 26.4

61

44.2

18 109 10 Mean 9.9

13.1 79.6 7.3 Standard deviation 5.9

6 months of diagnosis; mid stage—beyond 6 months, but not yet end of life; and end of life—within 6 months of the end of life.

Analyses Descriptive analyses were performed to describe the use, satisfaction, frequency, and desire for music therapy. Multivariate analyses were conducted to estimate the effect that music therapy has on parent-reported satisfaction and excellent quality of care in the PIC:TFK program. STATA version 10.0 was used to perform the analyses.22

Responders Versus Nonresponders Table 2 shows the results of bivariate analyses contrasting the characteristics of the survey responders’ children to that of children whose parents either did not respond to the survey or could not be located. There were significantly more black, non-Hispanic children in the nonresponder group (36%) than the responder group (20%, P value ¼ .00). Nonresponders had significantly younger children than responders, 9 versus 10 years old, respectively. In the nonresponder group, there were more children in the mid stage of illness (90%) and fewer in the end-oflife stage (2%) than in the responder group (P values ¼ .00 and .03, respectively).

Descriptive Analyses: Music Therapy Received by Children and Siblings Table 3 shows the results of 7 questions that were asked about the parents’ experiences with music therapy for both their children with life-limiting illnesses and their siblings. When asked if their children with life-limiting illnesses had received music therapy, about 44% of parents responded that they had and about 98% of parents report being very satisfied to satisfied with those music therapy services. Of the parents who reported that their children had not received music therapy, about 60% reported that they would like their children to receive these services. Table 3 also shows the results of 3 questions that were asked about the parents’ experiences with music therapy for the ill children’s siblings. About 17% of parents reported that their children’s siblings received music therapy. For the 78 parents who reported that their children’s siblings did not receive music therapy, 32% indicated that they wanted their children’s siblings to receive music therapy.

Results Multivariate Analyses Sample Characteristics Table 1 shows the characteristics of the sample. Forty-nine percent of the respondents’ children were female, 63% of the children primarily speak English, 50% of the children are white non-Hispanic, and 33% had some college education. Forty-four percent of the respondents had a household of 1 parent and 80% of the respondents’ children were in the mid stage of illness.

Table 4 shows the results of the multivariate analysis. The results show that the parents of children of other races/ethnicities were about 98% less likely to report being satisfied with the PIC:TFK program than their referent group. Parents of children at the end-of-life stage of illness were about 77% less likely to be satisfied with the overall PIC:TFK program than their referent group. Parents of children who spoke English were about 7.5 times as likely versus their

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Table 2. Responders Versus Nonresponders Responders

Child’s gender Male Female Child’s race/ethnicity Black, non-Hispanic White, non-Hispanic Hispanic Child’s stage of illness Early Mid End of life Child’s age a

Nonresponders

Number

Percentage

Number

Percentage

P Value

72 68

51.4 48.6

110 103

51.6 48.4

.72 .72

23 87 3

20.4 77.0 2.7

63 98 13

36.2 56.3 7.5

.00a .00a .08

15 7.2 188 90.4 5 2.4 Mean (standard deviation) 8.7 years (+ 5.4)

.07 .00a .03a

18 13.1 109 79.6 10 7.3 Mean (standard deviation) 9.9 years (+ 5.8)

.05a

P < .05.

Table 3. Descriptive Analyses of Use, Satisfaction, Frequency, and Demand for Music Therapy Has your child received music therapy? If yes, how satisfied are you with music therapy? If yes, are you satisfied with the frequency? If no, would you like your child to receive music therapy? Has your child’s sibling received music therapy? If yes, how satisfied are you with those music therapy services? If no, would you like your child’s sibling to receive music therapy?

Yes 43.6% Very satisfied to satisfied 98.3% Yes 90.0% Yes 59.0% Yes 16.7% Very satisfied to satisfied 100.0% Yes 32.0%

No 56.4% Neither satisfied or dissatisfied 1.7% No 10.0% No 41.0% No 83.3% Neither satisfied or dissatisfied 0.0% No 68.0%

Sensitivity Analyses non-English speaking counterparts to be satisfied with the PIC:TFK program. Parents of children who received music therapy were 23 times as likely to report satisfaction with the PIC:TFK program compared to their referent group. Only 2 factors were significant in parent-reported satisfaction with music therapy received by siblings: an ill child who speaks English or who is at the end of life. Results from the regressions where the dependent variable was ‘‘excellent’’ quality of care are also shown in Table 4. None of the variables significantly predicted reporting an excellent quality of care, and there was no variation in the music therapy indicator, meaning that all parents who reported that their children’s siblings received music therapy also reported that the quality of care in the PIC:TFK program was excellent.

To determine whether the regression results were dependent on the construct of the binary dependent variables, we tried alternate methods of constructing the binary variables. We set the binary variable for satisfaction equal to 1 if the parent reported that they were ‘‘very satisfied’’ and 0 otherwise. English speaking was the only significant predictor of satisfaction. For parent-reported quality of care, we were unable to estimate any models where the dependent variable included both ‘‘excellent’’ and ‘‘very good’’ because there was not enough variation in the dependent variable.

Discussion Compared to extant studies, the unique elements of this study are the population, assessment of

Music Therapy in Pediatric Palliative Care Program / Knapp et al 453

Table 4. Logistic Regression Results With Satisfied and Excellent Quality of Care as the Dependent Variablesa Model

Received music therapy Child’s gender Male Child’s primary language English Child’s race/ ethnicity Hispanic Black, non-Hispanic Other race Parent’s education High school graduate Some college College graduate Household type One parent Child’s stage of illness Early End of life Child’s age n R2 a

Satisfied With Program When Child Receives Music Therapy

Satisfied With Program When Sibling Receives Music Therapy

Excellent Quality of Care When Child Receives Music Therapy

Excellent Quality of Care When Sibling Receives Music Therapy

Parameter Estimate

Parameter Estimate

Parameter Estimate

Parameter Estimate

23.05b

0.47

1.63

-

0.23

0.34

0.50

0.56

7.46b

7.30b

2.12

2.48

2.61 4.84

3.77 7.30

0.92 0.64

1.01 0.64

0.02b

0.10

0.15

0.19

1.67

2.48

0.84

0.62

0.21 4.25

0.38 3.41

1.97 1.77

1.67 1.43

1.17

1.21

0.92

0.78

3.10 0.30 1.04 104 .12

4.13 0.32 1.06 100 .12

0.20 0.23b 1.02 104 .39

0.47 0.03b 1.03 104 .27

Referent groups: female, non-English, white non-Hispanic, less than high school, 2 parent household, and mid stage of illness. P < .05.

b

parents’ experiences for music therapy provided to both their children and their children’s siblings, use of multivariate analyses, and information on responders versus nonresponders. Our findings are the first to investigate the experiences of parents whose children with life-limiting illnesses are enrolled in an integrated pediatric palliative care program that offers music therapy. Most studies on music therapy are focused on patients at the end of life, yet the majority of children in our study are at earlier stages in their courses of illness. The diagnoses of children in our study are diverse, whereas several studies on music therapy are focused on oncology patients. Finally, the PIC:TFK program is the first publicly funded program to provide music therapy services to children with life-limiting illnesses and their families, and this population has never been studied.

Not only is this the first study of the experiences with music therapy of children enrolled in a pediatric palliative care program, it is the first to assess the experiences of both children with life-limiting illnesses and their siblings. Our results are somewhat consistent with a 2006 review of adult palliative care, which found that between 7% and 54% of patients with cancer had used complementary alternative medicine, including music therapy.23 Although an overwhelming percentage of parents report that they are satisfied with their children’s music therapy and the frequency of music therapy services, there is an unmet demand for music therapy services for 60% of the parents whose children did not receive music therapy. Parents who reported unmet demand for music therapy are located at the 3 of the 7 PIC:TFK sites. At each of the 3 sites, the respective hospices report problems in finding and

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hiring licensed music therapists in their areas. Future research should document the barriers to hiring licensed music therapists in palliative care programs and suggest potential solutions. Results from the multivariate analysis suggest that the use of music therapy was the greatest predictor of parent-reported satisfaction. Our findings corroborate those from a 2002 survey of primary caregivers regarding their experiences with a hospice’s complementary alternative medicine program.24 The study found that when patients received complementary therapies, their primary caregivers were more likely to report satisfaction with their overall hospice care. Our findings show significantly higher rates of nonresponse for parents of black, non-Hispanic children, which is corroborated by a large portfolio of existing evidence from other disciplines. Numerous studies, primarily in cancer research, suggest that minorities are less likely to participate in research and that structural, cultural, and linguistic barriers exist.25,26 Future research should be conducted to determine whether this nonresponse bias exists in other music therapy or pediatric palliative care studies. Results from our study could have immediate and far reaching impacts on states, health plans, and providers as they seek guidance on what services to include in these programs. Although publicly funded pediatric, integrated palliative care programs are in their infancy, recent proposed legislation (House Resolution 6931) would require all Medicaid eligible children to receive hospice services earlier than the last 6 months of life.27 As pediatric palliative care becomes more widespread, the findings from our study should convince agencies to include music therapy as a covered service and to have open and continuing dialogue with licensed musical therapy associations to identify and address barriers for providing these services. Several study limitations merit attention. First, the response rate for the survey was 62.8%. While this response rate is consistent with other surveys conducted with Medicaid eligible populations,28 we did find several inherent differences between responders and nonresponders. Second, we did not ask about the specific methods used during the music therapy sessions, such as songwriting, singing, playing instruments, and so on. Further testing should be conducted to determine what type of music therapy activities is preferred for this population and what type has the greatest impact on children’s

and siblings’ health indicators, such as stress levels and blood pressure. Third, we did not ask the children about their experiences with music therapy and we cannot assume that there is dyadic congruence between children’s and parental reports. Despite these limitations, our findings are the first to provide evidence on the parents’ experiences with music therapy in an integrated pediatric palliative care program. The ability to assess parents’ experiences should provide the pediatric palliative care community with useful information that can be used to advocate for the inclusion of additional music therapy services in new or expanding programs. Finally, our study has highlighted unmet demand for music therapy services. Under this new model of integrated, publicly funded pediatric palliative care, there is another funding mechanism for music therapy services for children with lifelimiting illnesses and their siblings, which might help identify and recruit more licensed music therapists.

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