Feasibility and Acceptability of Remote Music Therapy for Cognitively Impaired Children Receiving Palliative/Complex Care and Their Families

Abstract

Background:

Music therapy is one palliative care approach to improve physical and psychological outcomes for cognitively impaired children with medical complexity (CMC), their parents, and families. However, CMC are often excluded because some specialist services may not accommodate cognitively impaired and nonverbal children and are generally only available within metropolitan areas (large hospitals/cities). Many CMC are at home and cannot access such interventions. This study examined the feasibility and acceptability of a home-based, remote music therapy (RemoteMT) intervention for cognitively impaired CMC receiving palliative or complex care.

Design:

One-group pre-/post-intervention study design.

Setting/Subjects:

Seventeen CMC receiving palliative/complex care and their parents (N = 17 dyads) participated in the study. All study activities took place in participant homes in the United States.

Measurements:

Parents completed measures at T1 pre- (baseline) and T2 post-intervention (six weeks post-baseline) to assess CMC outcomes of physical stress and sleep disturbance; parent outcomes of anxiety, sleep disturbance, and perceived stress; and family outcomes of family adaptability and cohesion.

Results:

Results demonstrated improved child, parent, and family outcomes (e.g., p = 0.027 for child physical stress, p = 0.095 for family cohesion, p = 0.105) and feasible recruitment, data collection and intervention delivery.

Conclusions:

RemoteMT was a feasible and acceptable intervention for cognitively impaired CMC and their parents. Results indicate strong promise for benefits to child and parent outcomes. Full-scale efficacy testing is warranted.

Keywords

caregiver chronic disease music therapy palliative care palliative medicine pediatrics

Key Message

Remotely delivered music therapy is feasible and acceptable for cognitively impaired CMC and parents receiving palliative or complex care and showed strong signals for efficacy. Palliative care providers can assist in identifying patients and families most likely to benefit and advocate for home-based services to increase access to music therapy.

Introduction

Pediatric palliative care is an interdisciplinary approach to enhance quality of life and decrease suffering for children living with serious illness and their family members across physical, psychological, social, and spiritual domains. Delivered alongside curative or supportive care treatments, pediatric palliative care is particularly salient for children with life-limiting conditions, including children with medical complexity (CMC) who represent approximately 1.2 million children aged 0–17 years in the United States.¹ These highly vulnerable children with special health care needs have significant chronic and life-limiting health conditions affecting multiple organ systems, functional limitations, and high health care and resource needs.^2–5 About 28% of CMC experience neurological impairment,⁶ which further exacerbates their vulnerability, as these children are at high risk for cognitive and communication impairment, hindering their ability to convey physical symptoms effectively.^5,7,8 Though not all, many CMC with cognitive impairment are also receiving palliative care.⁹

Children living with chronic and complex life-limiting conditions are at high risk for substantial physical, psychological, and family environment distress.^10–12 Additional complexity occurs when these already vulnerable children have cognitive impairment, the most common developmental disorder defined as the condition of intellectual and adaptive functioning being significantly below average for a child’s chronological age.^13,14 CMC with cognitive limitations are especially vulnerable because they often have little to no verbal ability to communicate their symptoms¹⁵ and little access to services that are often only appropriate for those who are cognitively intact and at the hospital or near metropolitan areas.^16–18 CMC and their parents may both experience further psychological distress, physical distress, and strained family environments near the end of life.^19–30

CMC have been reported to experience high psychological symptom burden, such as anxiety and depression.^29,31,32 CMC and cognitive impairment are at a greater risk of experiencing emotional and psychological distress based on parent reports.³³ CMC often display a high symptom burden, including pain, sleep problems, and feeding difficulties.^2,11,34,35

Parents of CMC are at high risk of experiencing suboptimal physical and psychological health, including stress, anxiety, depression, burden, and below standard quality of life.^35–37 Parents of cognitively impaired children are also extremely high risk for stress, depression, and anxiety.^9,38 Caregivers of children with disabilities and cognitive impairment have reported negative physical, emotional, and functional health consequences including stress, worry, and physical impact. Parents of cognitively impaired CMC, particularly during times of critical illness or impending death, may be at high risk for experiencing a decreased sense of meaning and purpose in life.^39,40

CMC with cognitive limitations can impact the entire family and lead to negative consequences for the family environment,^41,42 including decreased family adaptability and cohesion. Many families of CMC perceive unhealthy family functioning related to family communication, affective involvement, and family roles.⁴³ Family functioning has been shown to be significantly related to medical adherence to provider prescription in CMC, and greater family cohesion and flexibility were reported to be positively associated with better medical adherence.⁴⁴ Family environment has been considered a protective factor to foster resilience, higher psychological well-being, and quality of life for CMC and their individual family members (e.g., siblings, parents).^20,21,45

Specialist pediatric palliative care services that serve CMC and their family members include music therapy as part of the multidisciplinary team. The remarkable nature of music to benefit health^46–49 suggests that family-centered music therapy may be beneficial for cognitively impaired CMC and their parent caregivers. Research has provided evidence that music therapy can improve patient psychological and physical outcomes.^49,50 Music therapists may use a variety of interventions in this work. For example, music therapy has been shown to promote brain changes that have positively influenced attention, emotional responses, communication, and social interactions in children with severe cognitive impairments.⁴⁶ Outcomes of songwriting, specifically, have included improved coping, social integration, and family environment in adolescents and young adults receiving a hematopoietic stem cell transplant.⁵¹ Adolescents and young adults have shared their perceptions that songwriting music-video interventions facilitate meaning-making and telling their story.⁵² Music therapy has been tested in pediatric populations, including adolescents and young adults after stem cell transplant,⁵¹ children with cancer,^53,54 children near the end of life,⁵⁰ children with disabilities,^55,56 children with severe neurological disorders,⁴⁶ and autism.⁵⁷ One study tested a songwriting intervention and provided a final music DVD to adolescents and young adults who were cognitively intact.⁵¹

Few home-based music therapy interventions have been developed for CMC who have cognitive^46,47,58 or speech/language impairments.^55,56 Interventions are typically patient-focused, sometimes inviting parents or other family members such as siblings to observe but rarely promoting child-parent interactions that could enhance the family environment.^59,60 Music therapy has rarely been uniquely tailored and remotely delivered to CMC with cognitive impairment and their families, resulting in the creation of a tangible product during the intervention process to document the child’s legacy and leave as a memento with the family in the case of death. These are profound gaps in the current state of science in pediatric palliative care. Specific aims of our study were to (a) determine the feasibility of a remote music therapy intervention for cognitively impaired CMC and their parents, and (b) assess the preliminary efficacy of our remote music therapy intervention for child psychological distress and physical symptoms, parent psychological distress, and family environment. We hypothesized that the intervention would be feasible and show positive trends for improved child, parent, and family health outcomes for children receiving palliative or complex care.

Methods

We used a one-group pre-/posttest intervention study design. After Vanderbilt University Medical Center Institutional Review Board approval (#191557), recruitment took place at Monroe Carell Jr. Children’s Hospital at Vanderbilt through the pediatric palliative care and complex care teams. Intervention sessions and data collection took place in participants’ homes (or preferred private locations) as all research activities occurred remotely. Eligible children were: (a) aged 5–17 years; cognitively impaired (cognitive function equivalent to 3-year-old or younger per parent report); (b) had received a palliative or complex care consult; and (c) had the ability to hear. Eligible parents were: (a) 18 years of age or older; (b) the child’s primary/secondary parent caregivers (both parents could participate in the intervention, but only the primary parent caregiver completed the data assessments); (c) absent of having any cognitive impairment; and (d) able to speak and understand English. Siblings of any age were invited to participate in the intervention as determined by the primary parent caregiver but did not complete any study assessments. Study procedures included intervention delivery and data collection (T1 baseline/pre-intervention and T2 six weeks post-baseline). These are described below.

Intervention delivery

The intervention was delivered within one week after participants completed baseline (T1) measures. Interveners included two board-certified music therapists. The study music therapists alternated to contact (e.g., phone, email) parents to schedule the intervention session 1. Child–parent dyads participated in a music therapy intervention (four sessions over four weeks, similar to previous studies) delivered on Zoom by one of the two board-certified music therapists who guided parents to write song lyrics about their child (Table 1). The same music therapist delivered all four intervention sessions to maintain continuity with each family. To create a music video for the family to keep, we incorporated (a) the audio recording of the song lyrics, (b) musical accompaniment, (c) photographs and video of child and family interactions, and (d) audio recordings of physiological features (respirations, verbalizations) of the child. Intervention delivery on Zoom required the interveners and participants to have a device (computer, tablet, or smartphone) with an internet connection, speakers, a microphone, webcam for video, and Zoom software. We encountered no barriers, as all participants personally owned these necessary technological items.

Table 1.

Music Therapy Intervention Components and Content

Session	Dose	Intervention content
1. Getting started	One hour	Learn how to use songwriting script Select music for project (offer 10 songs from 5 music genres) Brainstorm ideas for lyric/video content (what is important to child/parent/family)
2. Writing lyrics	One hour	Write lyrics using songwriting script Select who will sing (parent, family members, music therapist, co-sing, etc) Sing/rehearse completed song Discuss child physiological aspects (respirations, verbalizations)—memories/importance Discuss visual images (artwork, photographs)—memories/importance
3. Sing and record	One hour	Sing/rehearse song Digitally record vocal soundtrack for video Listen to completed vocal soundtrack Audio record child physiological aspects (respirations, verbalizations) Gather visual images and/or take pictures/video Complete storyboard
4. Music video	One hour	Draft shared with family—any suggested edits discussed Discuss thoughts about/reflections of music therapy project Music video finalized and provided to family (electronic link, plus thumb drive or DVD)

In each session, the music therapist assessed how to best incorporate the child into the therapeutic music-making and songwriting based on the child age, extent of cognitive impairment, physical presentation, alertness, and parental input. The music therapist adapted musical elements (tempo, dynamics, style, etc.) to best support child engagement and experience while guiding parents to promote sensory stimulation and comfort during each session using preferred instruments, toys, and comfort positions. Although not required, families were encouraged to incorporate any of the child’s preferred/familiar home items (e.g., instruments, toys, pillows, and/or comfort positions) during the music therapy sessions to promote engagement, family connections, and relaxation. Parents contributed to writing song lyrics about their child, selecting the child’s preferred music/song (from a bank of available songs), and singing or co-singing the recording of the song to be used in the music video. The music therapist used an accompaniment instrument (e.g., guitar) to support families singing their original lyrics and adjusted the music based on family preferences, offering different tempos and accompaniment styles. Siblings were invited to be actively involved throughout the songwriting sessions. The music therapist guided the family members through the songwriting script, providing opportunities for emotional expression, release, and validation. The songwriting script provided family members with opportunities to reflect on what makes their child unique, their child’s special role in the family, and all the ways they care for their child. The music therapist encouraged caregiver creativity to incorporate meaningful audio recordings of their child (e.g., vocalizations, breath sounds, laughter) in the final music video project. Parents recorded this audio based on their preferences and shared the audio files with the music therapist to be included in the final music video. Through both musical and verbal processing, the music therapist provided an outlet and container for the family’s emotions, challenges, and memories. The music therapist used the musical elements of the sessions (hello song, songwriting intervention, goodbye song) to create a safe environment for expression and promote relaxation and meaningful connections for both the child and participating family members.

Data collection

Assessments included T1 pre- (baseline) and T2 post-intervention (six weeks post-baseline) data collection. T1 baseline: Parents completed T1 measures electronically online via REDCap, a secure, web-based application for building and managing online surveys and databases.^61,62 After obtaining written parent consent, the study coordinator documented the appropriate email address to immediately send the electronic link for the REDCap survey to parents. The study coordinator made reminder calls or sent reminder emails for surveys not completed within one week or completed surveys that appeared to have unintentional missing data (e.g., if second page of survey was missing data). T2 data collection: Parents repeated baseline questionnaires at T2, six weeks post-baseline (within one-week post-intervention). Assessment time points were selected based on our preliminary work and similar adult and pediatric studies.^51,63 In addition to baseline questionnaires repeated at T2, parents completed a concluding survey including (a) multiple choice satisfaction questions (e.g., How was the songwriting activity helpful to you/your ill child/your family? Please select all that apply), and (b) open-ended questions (e.g., How do you think the songwriting activity would be more helpful to other families in the future?) to help further explain the process of implementing the intervention.

Instruments (Table 2) were selected based on outcome variables identified in previous music-based intervention studies and our previous work.^{50,51,53,56,59,72–75} We selected Patient-Reported Outcomes Measurement Information System (PROMIS)⁷⁶ when possible for both parent self-report and parent-proxy measures developed for parents serving as proxy reporters for children ages 5–17 years and those with cognitive impairment.⁷⁷

Table 2.

Instruments

Aim	Outcome	Measures	Time
1	Child	PROMIS^a Parent Proxy Physical Stress Experiences—Short Form^64,65	T1–T2
1	Child	PROMIS^a Parent Proxy Sleep Disturbance—Short Form^66,67	T1–T2
1	Parent	PROMIS^a Anxiety—Short Form⁶⁸	T1–T2
		PROMIS^a Sleep Disturbance—Short Form⁶⁹	T1–T2
		NIH^b Toolkit Perceived Stress Survey⁷⁰	T1–T2
1	Family	FACES^c IV^51,71	T1–T2
3	Intervention process	Concluding Survey	T2

Patient-Reported Outcomes Measurement Information System.

National Institutes of Health.

Family Adaptability and Cohesions Scales.

Analysis

IBM SPSS Statistics (version 29.2) was used for analyzing the quantitative data. Frequency distributions were used to summarize nominal/ordinal data, with median (IQR) used for continuous data due to the small sample size. Mann–Whitney tests (age) and Pearson chi-square tests (all other variables) were used to compare the characteristics of the participants completing the study to those who did not. Wilcoxon signed-rank tests were used to assess the changes in the outcome measures scores from T1 to T2. An alpha of 0.05 was used for statistical significance. Results were transformed to Cohen’s d effect size statistics. Counts and frequencies were reported for parent responses to the survey questions on the concluding survey.

Results

Study recruitment took place from March 2020 through March 2021. We successfully contacted 29 parents of CMC receiving complex/palliative care. Of those, 17 parents (59%) enrolled in the study. Seventeen parents completed all T1 baseline measures, and 10 completed the entire study. Attrition (41%) was due to child death (n = 2) and passive response to follow-up (n = 5). Fourteen of the 17 (82%) enrolled families completed all RemoteMT sessions via Zoom. Specifically, 17 CMC–parent dyads, 8 secondary parent caregivers, and 25 siblings participated in 51 total sessions. Table 3 includes summaries of the demographic characteristics of those participants with T1 only and those completing the study. No significant differences in characteristics were observed (p > 0.29).

Table 3.

Parent Demographic Characteristics

Characteristic	T1 only (N = 7)	Completed (N = 10)	p
Characteristic	Median (IQR)	Median (IQR)	p
Age (years)	45.0 (41, 48)	48.0 (40, 59)	0.43
	n (%)	n (%)
Race/Ethnicity			0.79
White/Caucasian	6 (85.7)	9 (90.0)
Multiple/Other	1 (14.3)	1 (10.0)
Gender			0.39
Female	7 (100.0)	9 (90.0)
Male	0 (0.0)	1 (10.0)
Highest education level			0.33
High school	2 (28.6)	0 (0.0)
Some college	1 (14.3)	3 (30.0)
College degree	3 (42.9)	5 (50.0)
Advanced degree	1 (14.3)	2 (20.0)
Annual family income			0.32
< $10, 000	2 (28.6)	0 (0.0)
$10–50,999	3 (42.9)	2 (20.0)
$51–99,999	0 (0.0)	4 (40.0)
> = $100,000	1 (14.3)	1 (10.0)
Family structure			0.48
2 parents	7 (100.0)	9 (90.0)
1 parent	0 (0.0)	1 (10.0)
Family member			0.29
Father	0 (0.0)	0 (0.0)
Mother	7 (100.0)	5 (50.0)
1^st Child	0 (0.0)	1 (10.0)
2^nd Child	0 (0.0)	1 (10.0)
3^rd Child	0 (0.0)	2 (20.0)
4^th or Younger child	0 (0.0)	1 (10.0)
Children in family			0.56
1	1 (14.3)	2 (20.0)
2	2 (28.6)	4 (40.0)
3	1 (14.3)	2 (20.0)
≥4	3 (42.9)	2 (20.0)
Relationship status			0.53
Single	0 (0.0)	2 (20.0)
Married	7 (100.0)	8 (80.0)
Parent living arrangement			0.28
With parents	0 (0.0)	1 (10.0)
With children	0 (0.0)	2 (20.0)
With children and partner	7 (100.0)	7 (70.0)

Children’s physical stress, as assessed with the PROMIS Parent Proxy Physical Stress Experiences scale, significantly decreased between T1 and T2 (p = 0.03, Cohen’s d = −1.48, Table 4). Six (60%) of the 10 parents reported that the intervention process and music video helped their child. On the concluding survey, parents reported that the intervention decreased children’s stress (n = 5; 50%), anxiety (n = 3, 30%), and sadness (n = 2; 20%) and facilitated documentation of their child’s legacy (n = 5; 50%). Although not statistically significant, a beneficial effect was observed for decreased parental sleep disturbance (p = 0.11, Cohen’s d = −0.75). While the quantitative responses with the PROMIS measures indicated a trend toward increasing parental stress over the course of the study (p = 0.07, Cohen’s d = 0.47), parents completing the study reported via the concluding survey questions that the intervention process (n = 9, 90%) and music video (n = 6; 60%) were helpful to themselves. Some parents reported that the intervention helped their anxiety (n = 2, 20%) and stress (n = 3, 30%) based on concluding survey responses.

Table 4.

Outcome Summaries: Change in T1 to T2

Measure	N	Possible min, max	T1 median (IQR)	T2 median (IQR)	p (d)
PROMIS Parent Proxy Physical Stress Experiences (Child)	7	8, 20	20.0 (11, 22)	15.0 (11, 18)	0.03 (−1.48)
PROMIS Parent Proxy Sleep Disturbance (Child)	10	8, 20	11.0 (8, 13)	9.0 (7, 11)	0.25 (−0.23)
PROMIS Anxiety (Parent)	10	8, 20	16.0 (12, 23)	16.0 (10, 19)	0.53 (−0.16)
PROMIS Sleep Disturbance (Parent)	9	8, 20	13.0 (11, 16)	11.0 (8, 17)	0.11 (−0.75)
NIH Toolkit—Perceived Stress Survey (Parent)	7	10, 50	25.0 (18, 26)	27.0 (18, 31)	0.07 (+0.47)
Family Adaptability and Cohesions Scales (FACES IV)
Cohesion	10	7, 35	28.5 (26, 31)	31.0 (27, 33)	0.10 (+0.53)
Flexibility	8	7, 35	27.5 (26, 30)	27.0 (22, 32)	0.73 (+0.35)
Disengagement	10	7, 35	13.0 (10, 16)	13.0 (11, 17)	0.67 (+0.15)
Enmeshment	10	7, 35	12.5 (11, 15)	11.5 (9, 15)	0.17 (−0.54)
Rigidity	10	7, 35	18.0 (16, 20)	21.0 (16, 24)	0.22 (+0.40)
Chaotic	9	7, 35	12.0 (10, 18)	13.0 (11, 16)	0.83 (+0.02)
Communication	10	10, 50	42.0 (36, 46)	41.0 (36, 44)	0.31 (−0.26)
Satisfaction	10	10, 50	36.5 (31, 44)	35.0 (31, 41)	0.79 (−0.16)

The strongest beneficial effects on the Family Adaptability and Cohesions Scales IV outcome measure were observed for increasing family cohesion (p = 0.10, Cohen’s d = + 0.53) (Table 4). Parents reported that the intervention increased family cohesion (n = 4, 40%), relationships (n = 4; 40%), and adaptability (n = 1, 10%).

All parents who completed the T2 measures (n = 10; 100%) shared their feedback via the open-ended responses on the intervention process survey at T2. All (n = 10; 100%) were satisfied or extremely satisfied with the intervention process and reported that the intervention helped them as parents, as well as their child and family. One parent reported, “I believe the process of meeting with and working with the music therapist brought joy and interest to (child’s) life. I think it was mentally stimulating to her.” Another parent shared, “This was a wonderful opportunity to enrich and stimulate (child’s) mind while staying safely home… I am hoping that perhaps this type of therapy, offered remotely, might become a reality for (child) and other patients in the (clinic). …it is a wonderful way to enrich and broaden the rather narrow world that (child) and children like her must live in.”

Discussion

The science of music therapy has shown compelling research evidence of the benefits of music therapy during the past decade. Our study provided evidence of successful remote delivery of a music therapy intervention to cognitively impaired CMC and their family members. Our results support feasibility and positive trends for clinical benefit to the child, parent, and family. Enrollment results and study completion data indicated feasible recruitment and retention. This feasibility suggests participants’ acceptability of the study design, measures, and remotely delivered intervention.

Quantitative and qualitative results of our study suggested that the music therapy intervention significantly decreased child physical stress. This result aligns with recent studies showing music therapy’s effect on reducing physiological markers of physical stress. For example, music therapy has been shown to reduce cortisol, blood pressure, and heart rate.⁷⁸ Recent studies suggest that music therapy has improved subjective measures of stress such as showing decreased anxiety, depression, and perceived stress.^78–80

While not statistically significant, trends noted some increase in parent stress when comparing T1 to T2. This contrasted with qualitative reports that parents found the intervention to be beneficial including some parents reporting decreases in stress/anxiety on a more global response measure. Additionally, previous studies have found that music therapy decreased parental stress in parents of patients with Rett syndrome⁸¹ and parental anxiety and depressive symptoms in parents of preterm infants.⁸² It is unclear what factors may have contributed to the quantitative trend for increased parent stress; however, this could have been due in part to increasing parent demands because of the child’s health decline, effects of the COVID-19 pandemic during study activities, and/or differences in the types of assessment questions. Based on the synthesis of existing literature and results of our study as a whole, we hypothesize that the trend toward increased parental stress in the quantitative data would change to a more favorable outcome in a more highly powered study.

Interestingly, although not statistically significant, positive trends were noted for our intervention’s effect on increasing family cohesion. A recent systematic review highlighted the family-centered nature of music therapy in pediatric palliative care populations.⁸³ Previous work has similarly shown favorable outcomes for family adaptability/cohesion in adolescents and young adults with cancer receiving music-based interventions.⁸⁴ Mothers of infants in the neonatal intensive care unit (NICU) have also reported family cohesion as an outcome of mother–infant music therapy in the NICU.⁸⁵ Family cohesion may be positively impacted by music therapy, due in part to neural mechanisms based on prior evidence demonstrating neural synchronization directed from parent to child in children with disabilities receiving music therapy.⁸⁶

Our noteworthy methodology includes our remote delivery and intervention methods. Our study provides promising evidence about the successful method of remotely delivering a music therapy intervention to cognitively impaired children with serious life-limiting conditions. Such remote delivery methods contrasted previous studies using face-to-face music-based interventions.^52,87–92 Gaps exist for remotely delivered methods, which are critical for home-based interventions needed for pediatric palliative care.^16,17,93 Pediatric palliative and complex care studies often exclude children with cognitive impairments for behavioral interventions; however, our intervention methods allowed these children to be involved as songwriting contributors by incorporating audio recordings of their physiological aspects (respirations, verbalizations).

Limitations

Generalizability of the study results is limited to a small sample of cognitively impaired children 5–17 years of age and primarily mothers recruited from a single institution. The small sample size limits the conclusions that can be made and limits generalizability. Outcomes could have been affected by varied life-limiting diagnoses and the child’s location on the illness trajectory. Families may have been differentially affected by the COVID-19 pandemic during their participation, as well. The study was limited by a one-group design and a lack of a control group, contributing to a number of potential confounds. Despite these limitations, this study contributed new knowledge to the science of pediatric palliative care and demonstrated promising opportunities for future complementary care. We successfully completed the study aims, and the study results lay a strong foundation for future efficacy testing.

Implications

More research is critical to better understand how music therapy interventions may benefit cognitively impaired children receiving palliative care and their families. Our next step is to test the efficacy of our intervention’s virtual delivery via a large, full-scale randomized controlled trial. Future research is needed to better understand remote delivery methods, recruitment of fathers, what format of music therapy is most beneficial for specific patient populations, and the most beneficial point in the illness trajectory to offer such interventions. Research should include qualitative methods to better explain quantitative outcomes and the intervention process. Biomarkers may be considered to assess physical outcomes, complementary to parent-proxy reports for cognitively impaired pediatric populations. Researchers must also be cautious not to overburden these highly vulnerable children and their family members. For example, physiological measures of parent-collected salivary cortisol at home may be too burdensome for this population. Longitudinal studies are needed to assess long-term outcomes of music therapy. Additionally, results have implications for palliative and complex care clinicians who are in ideal roles to identify patients and families who may benefit from music therapy. Healthcare professionals can assist by referring patients and their families to board-certified music therapists who are specialized to offer such services.

Conclusion

This innovative study determined the feasibility and acceptability of our remotely delivered music therapy intervention for cognitively impaired children receiving palliative and complex care and their families. Results show positive signals for clinical benefits to the children, their parents, and their families. Our novel approach has strong potential to shift the paradigm of standard of care not only in pediatric palliative care but also in other populations who could benefit from our methods of remotely delivering music-based interventions to individuals with cognitive or verbal impairments.

Authors’ Contributions

T.F.A., M.J.G., M.L., T.H., and V.H.-F. conceptualized and designed the study. M.S.D. assisted on data management and conducted the statistical analysis. T.F.A. drafted the initial article. M.S.D., M.J.G., M.L., T.H., and V.H.-F. critically revised the article for important content. All authors reviewed and approved the final version of the article.

Footnotes

Acknowledgments

The authors thank the children and parents who generously participated in this study. The authors acknowledge Dana Kim and Rylie Webber who served as the board-certified music therapists and contributed to the development and implementation of the intervention. We also acknowledge Kelly Davis who served as the study coordinator for the study.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was supported by the Vanderbilt University Chancellor’s Faculty Fellow Award (Principal Investigator [PI]: T.F.A., 2019–2021) and NIH/National Center for Advancing Translational Sciences (grant number UL1 TR000445).

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