Shifting Perspectives and Transformative Change: Parent Perspectives of an Active Music Engagement Intervention for Themselves and Their Child with Cancer

Abstract

Background:

Children with cancer (ages 3–8 years) and their parents experience significant, inter-related distress associated with cancer treatment. Active music engagement (AME) uses music-based play and shared music making to mitigate this distress. To advance our understanding about how AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi-site mechanistic trial. The purpose of this qualitative analysis was to describe parents’ experiences of AME for themselves and their child and to better understand how the intervention worked to lower parent-child distress.

Procedure:

We conducted a total of 43 interviews with parents/caregivers and purposively analyzed all interviews from underrepresented groups based on race/ethnicity and parent role. We used thematic analysis and achieved thematic redundancy after analyzing 28 interviews.

Results:

The following statement summarizes resulting themes: Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief.

Conclusions:

This work elucidates how AME works to counteract stressful qualities of cancer treatment. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist-led sessions. Accessible, music-based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.

Introduction

Emotional distress experienced by parents and their young child with cancer is interrelated, prevalent, and often severe. Half of young children experience clinically significant distress during cancer treatment; parents describe this distress as withdrawn, quiet, and regressive behavior, accompanied by clinging, moodiness, and anger.¹ Physical symptom distress (pain, fatigue, nausea) and changes in play, a primary indicator of child functional performance, are common.² As many as 87% of children in cancer treatment have active play difficulty, often substituting sedentary activities that can create a problematic cycle of physical inactivity and disturbed mood.³

Parents also experience heightened anxiety and depressed mood, with up to 83% reporting traumatic stress symptoms (TSS) within the first month of their child’s diagnosis.⁴ For some parents, TSS persist throughout treatment and into survivorship. Specific symptoms include difficulty making decisions, decreased concentration, edginess, and feeling emotionally numb or detached.⁵ The immediate impact of parent distress includes changes in the frequency and quality of parent-child interactions, diminished capacity to provide comfort to their child, and decreased sense of well-being.^4,6–11 Pediatric cancer studies indicate a strong positive relationship between parent and child distress, with young children being most vulnerable to parent distress.^1,7,12–14 Given the strength of this relationship, common underlying processes are probable, lending empirical and theoretical support for dyadic intervention.

Music-based play is a naturally occurring, accessible, and developmentally appropriate parent-child activity that music therapists often use to help regulate emotion and support parent-child interactions during cancer treatment.^15–18 The Active Music Engagement (AME) intervention is a theoretically grounded intervention that uses interactive music play to counteract stressful qualities of the cancer treatment environment to reduce the interrelated stress experienced by young children and parents during cancer treatment. Grounded in Self-Determination Theory,¹⁹ the Contextual Support Model of Music Therapy (CSM-MT)²⁰ explains how music can be used to create supportive environments by offering optimal levels of structure, autonomy support, and relationship support. AME is a dyadic intervention (involves both parent and child) with sessions designed for delivery by a board-certified music therapist who tailors music experiences that encourage active engagement in and independent use of music play to manage distress (Table 1). AME sessions were delivered over the course of three daily 30-minute sessions during a 3+ day course of chemotherapy, whether inpatient or outpatient. Early studies established AME as beneficial in reducing behavioral indicators of child distress and explored caregiver benefit.^20–22 To better understand how and for whom the AME intervention works, our most recent trial looked at mediators and moderators of AME intervention effects.²³

Table 1:

Active Music Engagement Intervention Components and Theoretical Principles^†

Intervention Component	Theoretical Principles
Component 1: Music-Based Play Activities	Predictable environments provide structure that supports child competence. Therapist uses familiar music activities to provide structure and increase child’s ability to predict what will happen in their environment. Leveled activities help ensure success and support child competence. Therapist tailors physical activity requirements to meet the individual needs of each child. Enables child success and engagement during periods of high or fluctuating symptom distress. Opportunities to make independent decisions support child autonomy. Child chooses from a variety of music play activities, and each activity includes a wide range of materials and activity options so child can make choices for self and others. Therapist uses improvisational techniques to follow child-initiated changes in their music making (e.g., child changes tempo or style of playing). Activities structured to support parent-child interaction. Activities are designed to structure and support reciprocal parent-child interactions. Therapist individualizes experiences to support increased frequency and quality of interactions.
Component 2: Music Play Resource Kit	Supports independent use of music play to manage distress between therapist-led sessions. Activities mirror content from therapist-led sessions. The kit includes: Professional audio recording of music composed and/or arranged specifically for the AME intervention. Age-appropriate musical instrument and play materials that correspond to each activity. Activity cards designed to give children/parents information “at-a-glance” on ways they can use their kit.
Component 3: Parent Tip Sheets	Promotes parent competence about how children use play to cope and ways to engage their child in music play. Promotes parent autonomy by empowering parents with skills/resources to support their child during treatment. Supports parent-child relationships through normalizing, music-based play activities

^†Table reprinted with permission in accordance with creative commons open access license ‘Attribution-Noncommercial 4.0 International’ (CC BY-NC 4.0) http://creativecommons.org/licenses/by-nc/4.0/ for the following publication: from Russ KA, Holochwost SJ, Perkins SM, et al. Cortisol as an acute stress biomarker in young hematopoietic cell transplant patients/caregivers: active music engagement protocol. JACM. 2020;26(5):424–434.

To advance our understanding about how the AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi-site mechanistic trial (R01NR1578). The purpose of this qualitative analysis was to describe parents’ experiences of the AME intervention for themselves and their child and to better understand how the intervention worked to lower parent and young child distress during acute cancer treatment.

Methods

Participants and Sampling Approach

We interviewed parents randomized to the AME arm of the trial. We approached AME participants within 2–3 weeks of completing study activities for the main trial and invited them to participate in a qualitative interview about their experience of the AME intervention.

Data Collection

Study team members trained in qualitative interview techniques conducted semi-structured interviews by phone or in-person based on parent preference. Questions focused on parents’ overall experience, what they found useful and meaningful for themselves and for their child and what they would change if given the opportunity. The interview guide gave structure to the interview while simultaneously allowing parents to share any information they deemed important. Interviews were audio-recorded, professionally transcribed, checked for accuracy and stored on a HIPAA compliant drive.

Data Analysis

We used thematic analysis²⁴ to analyze qualitative data for this study. Interviews were uploaded into MaxQDA²⁵ for data management and analyzed by the first and senior author (KS and SR). Each interview was initially coded to identify meaningful statements and these statements were subsequently sorted into themes. After all interviews were initially coded, the researchers analyzed the individual themes and subthemes, comparing them to the whole for clarity and fit. When needed, data were re-categorized, and relationships clarified to ensure that the subsequent results were clear, complete and non-redundant.

Results

Of the 63 parents who completed the AME arm of the trial, 43 provided a qualitative interview. We used purposive sampling of interviews to ensure that we captured the experiences of a diverse group of participants based on child age, parent role (father/mother), and parent/child race and ethnicity. Demographic and clinical information were reported by the parents as part of the main trial (Table 2). Interviews lasted from 5–23 minutes (mean=13 min.). We reached redundancy of themes with 28 interviews. The analysis yielded 4 themes and 13 subthemes (Table 3). The following statement summarizes parents’ perceptions of the intervention:

TABLE 2:

Demographics

N=28	N (%)
Parent/Caregiver Age	Mean 38.3y
	Range 27–65y
Caregiver Role
Father	6 (21)
Mother/Grandmother	22 (79)
Race
Black	4 (14)
White	17 (61)
Asian	3 (11)
Other	1 (3)
More than one race	2 (7)
Did not answer	1 (3)
Ethnicity
Hispanic	3 (11)
Non-Hispanic	25 (89)
Child Age
3–5yr	17 (61)
5–6yr	11 (39)
Child Gender
Girl	13 (46)
Boy	15 (54)
Race
Black	4 (14)
White	15 (54)
Asian	2 (7)
Other	2 (7)
More than one race	4 (14)
Did not answer	1 (3)
Ethnicity
Hispanic	4 (14)
Non-Hispanic	24 (86)

Table 3:

Themes, subthemes and representative quotes

Theme	Subtheme	Representative Quote
Safe and healthy space	Diverts and deflects	“It definitely, it was a, I don′t know if I get cheesy, like a ray of sunshine on a stormy day kind of thing.” (F2-4G)
	Normalizes	“He really enjoyed it. It made him forget what he was doing, I think. He immediately got up and started dancing, and completely forgot where he was and what he was doing. He got to kind of step away from chemo.” (M11-5B)
	Supports relationships	“. I could tell he really enjoyed it, instead of just playing with electronics and stuff to keep us busy. I thought it was really a good time, like I said, bonding and just having fun together, so I really liked that time when we got to do it.” (M6-4S)
Transformative experience	Marked change in child	“…seeing her get excited about having the musical therapist come in, we can bring out her toys, and even between the sessions bringing out the toys, seeing her eyes light up. At first she′d play shy when she′d come in and get ready to start our session, but then she would, oh, my gosh, it was like a 180 with her. She sat straight up. She smiled, she laughed.” (M2-4G)
	Profound relief	“I think it kind of just takes your mind off of any of the serious problems you might be facing and just gives you an uplift for the day.” (GM1-3G)
	Something to look forward to	“I got really frustrated with [Child] sometimes at the hospital because she would fight against all the tests and refuse to do things, so it down was really nice to have that to look forward to.” (M12-6G)
	Parent cognitive shift	“I think that’s the biggest benefit of doing something like this, teaching your kid how to adapt and learn and enjoy, and it not being a negative thing for them.” (F3-4G)
Learning and enactment of new skills	Child enactment	“She not only learned it, but she taught it as well, by herself. I didn’t have to remind her. I didn’t have to re-show her. I didn’t have to like put the toys in her hands and say okay, this is what you do with it. She learned it on her own, and she taught it on her own to her sister.” (F3-4G)
	Lowering stress	“For 30 minutes, I am out of that, just thinking about this, so it takes you out from that stress.” (M13-4G)
	Parent enactment	“We would ask him, hey do you want to do this? Like when we’re trying to figure out what he wants to do while he’s here, and a lot of times he would just pull it out and start playing, and we would sing along with him, and we would just play.” (M4-5B)
Counteracts suffering	Connectedness	“It was something that we got to do together also, so that was kind of a lot different, and honestly, very uplifting again for both of us I think, to be able to do this with each other, because in the hospital there’s not a whole bunch of stuff we can do together” (1049)
	Empowerment	“In my opinion, that’s the whole point of this whole thing, is to get the child, whoever it is, to get something from it and be able to put that out, or to be able to tweak it in their own little way and change if from like monkeys to whatever they like, or change from a crocodile to an animal that they enjoy.” (4020)
	Sustained relief	“It just felt good to have something that [Child] can turn to, because we played music one night before bed, before bedtime, to try to help calm him or whatever, because he just seemed like a little bit restless. That makes me feel good that we have something that we can turn to, to help him in whatever situation” (1038)

Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief.

Theme 1: safe and healthy space includes three subthemes: 1) diverts and deflects, 2) normalizes, and 3) supports relationships. The intervention provided an opportunity for both parent and child to divert their attention away from cancer for a bit. “It made me forget stuff, about me being worried and just participating with her” (Mother 1, 8y/o girl; M1–8G). Similarly, parents and children were able to engage in a normal childhood activity, playing, amidst the stress of cancer treatment. “We’re going through all this stuff, it’s getting her relaxed and still being that kid, and not that sick kid” (Father 1, 3y/o girl; F1–3G). This functioned to remind parents that their child could still play and enjoy normal activities. The intervention also supported the parent/child relationship, giving them activities to engage in where they could enjoy the time spent together even during treatment. “It helped me connect with her, when daddy’s not necessarily her favorite person at the time” (F2–4G).

Theme 2: transformative experience includes four subthemes: 1) marked change in child, 2) profound relief, 3) something to look forward to, and 4) parent cognitive shift. Parents described the transformative experience that they witnessed in their child and the positive impact this had for themselves. They saw a marked change in how their child interacted. “She didn’t have a whole lot of energy, then after we had the fun, silly sessions of playing with music therapy…she wanted to get up. She wanted to move” (M2–4G). Seeing this change gave parents a feeling of profound relief, which led them to look forward to sessions, knowing that the experience would be positive for their child. “It was very emotional at times, how involved they got in it and they just felt real relaxed. It meant a lot to me, to the point at times when it just even made me cry that she was getting into music so much. (M3–8G). This experience led to a cognitive shift, an “a-ha” moment, where parents realized that there could be joy and playfulness amidst the cancer experience even when their child was not feeling well. “…to be able to take home happiness from this whole thing was great to be able to do, because prior to that …it would have just been all gloom” (F3–4G).

Theme 3: learning and enactment of new skills includes 3 subthemes: 1) child enactment, 2) lowering stress, and 3) parent enactment. The AME intervention offered children and parents the opportunity to learn new skills, exert control over their environment and see alternate possibilities during cancer treatment. For the child, this meant opportunities to be “in charge” and make choices. “She participated and she liked all the different, the variety of activities that were available to her; the fact that she kind of got to be in charge of picking her activity” (M7–5B).

“After we would have our sessions, she’d be super energetic. She would actually want to do stuff. Before we started this program, she kind of, I don’t want to say she sat like a bump on a log, but she didn’t seem too excited about stuff. She’d have her toys that we brought from home, but she didn’t seem like she had a whole lot of energy, and then after (sessions with music therapist) …she wanted to move. She was more responsive to the physical therapist when we would come and do our sessions with them too, so it gave her a better mood so that she was willing to do other stuff too, so that was really awesome”

(M8–4G).

Children learned to associate the activities with feeling better and this often led to child-initiated AME kit use with parents serving in a supportive role. “He would always initiate it. We would ask him, hey do you want to do this? Like when we’re trying to figure out what he wants to do while he’s here, and a lot of times he would just pull it out and start playing, and we would sing along with him, and we would just play” (M4–5B). Seeing this improvement in the child lowered parent stress. For the parents, this increased their confidence in their ability to support their child.

Parent enactment required the cognitive shift noted in the previous theme. When parents witnessed the benefit their child was receiving from AME activities and saw their child initiating use themselves, parents felt better as well. “She’ll be getting her port accessed and she’ll stop crying and start singing” (M5–3G). This built parent confidence in their ability to affect the environment, whether at hospital or home for both them and their child. “That was just kind of like me and him time. But, even when we went home, we still kept the bag and stuff, and we still did it at home” (M6–4B). For one father, participating in AME sessions helped him realize that the routine of the hospital didn’t have to be absolute, and they could relax and enjoy time together too. “[…] but it [AME] made you realize that we’re not in some kind of an army situation […] “It becomes just a flat routine. There’s nothing enjoyable in it, and because of that, you don’t realize it, but your whole life does that. That lady really made me realize sometimes you need to break away from routines. You need to push your own button, and let the kid do what he wants. You don’t realize it, but you’re not letting him do anything, because of the routine.” (F4–4B)

Theme 4: Counteracts suffering included 3 subthemes, 1) connectedness, 2) empowerment, and 3) sustained relief. AME fostered connectedness between parent and child at a time when many parents noted that the easiest way to support their child was to allow them time with technology and that AME offered an alternative. “It was good, because you get to do hands-on things, a hands-on activity with your child while he’s going through this, and something that we could do together” (M9–6S).

AME empowers dyads to shift from just trying to “get through” treatment to using AME strategies to mitigate their own suffering and find shared pleasure in normal activities. “As far as for me, honestly there was a point in the study that actually brought happy tears to my eyes, because, you don’t understand the difference it made in his world. He went from being extremely miserable to just the happiest kid in the world, so for me, for my experience and what I think it could do as far as helping people, it totally, totally, totally the end result is it uplifts spirits for sure. The morale I guess is what you call it, it totally brings it up” (F4–4B). Another parent noted “I think just being able to play, being able to not think about cancer for 15, 20 minutes, and just be five (years old)” (M4–5B)

Parents reported that having the AME activities as new tools in their toolbox produced sustained relief. “Music therapy really made her happy, which made me happy too because one of my big stresses, she hates being here and I don’t want her to hate being here. I don’t want her to think it’s her fault… and this was a fun thing for us to do together” (M8–4D). “We’re still going through all this stuff, it’s getting her relaxed, and still being that kid, and not that sick kid” (F1–3D).

Discussion

Consistent with social referencing and emotional contagion research, pediatric cancer studies indicate a strong positive relationship between parent and child distress, with young children most vulnerable to parent distress.^8,26–29 Given the strength of this relationship, use of a family-based, dyadic approach is well justified, yet rarely seen in pediatric oncology intervention trials.³⁰ Using dyadic, music-based play, the AME intervention preserves the family context where parent-child interactions naturally occur, and it is through these interactions and changes in perceptions about the cancer treatment experience that improvement in child and parent outcomes were expected to occur. Results from this qualitative study provide rich evidence for how parents experienced AME and how active music play worked to lower distress.

Central to the success of any behavioral health intervention is engagement and the formation of trusting relationships among care providers, patients, and their families.³¹ Parents provided clear descriptions about how the music therapist created a “safe and healthy space” by supporting the parent and child to become immersed in music play experiences that supported their child’s autonomy and provided a meaningful shared experience.

Parents shared that support from the therapist was essential to forming a “safe space” where they could relax, let their guard down, and become playful with their child. This is important because we know that parents are the most salient buffers against the negative impact of stress for young children.^32,33 However, due to heightened stress during cancer treatment parents may struggle to engage in interactive and supportive play with their child.³⁴ During AME, the music therapist invites the parent to play with their child while sharing the mental and energetic load of sustained play. Parents felt this support and commented on it frequently in their interviews.

Parents also identified ways the music therapist created a “safe space” for their child. They described therapists’ intentional efforts to attune with and support their child’s autonomy. Attunement, or the matching of affect/energy between the child and music therapist, occurred both relationally and musically reflecting they were seen and understood without judgment. To parents, this looked like the music therapist engaging in “silly” or “child-like” actions and following their child’s lead in music making.³⁵ A central, and theoretically grounded feature of AME sessions is offering numerous opportunities for children to make independent choices and experience control by guiding the direction of the music play experience. Parents recognized this as important and empowering for their child at a time when choice and control are constrained. Parent/therapist-child attunement and supporting child autonomy are central to helping young children regulate their emotions and develop self-directed coping strategies during stressful events,³⁶ and it was through this attuned play that parents began to observe a change in their child.

Parents described this change as “transformative” – witnessing marked changes in their child’s mood, energy, and symptom distress that led to a corresponding sense of relief for themselves. These changes can be explained in two ways. First, mutual enjoyment, shared communication and attunement between a parent and child during play can regulate the body’s stress response.^37–39 Numerous studies have established that during cancer treatment, parents move into a state of vigilance where their focus is on their child’s survival and other aspects of life are put on hold – resulting in sustained activation of parents’ fight or flight response.^22,40–42 During AME the therapist used an individualized approach that promoted emotion regulation through mutual parent-child engagement- supporting parents to immerse themselves in a normalizing experience and playfully connect with their child. These descriptions are consistent with quantitative findings from this same trial suggesting that increased parent well-being is mediated through parent engagement with their child.²³

Second, parents described a cognitive shift. As parents watched their child become active and playful, it helped them focus on well aspects of their child, rather than symptoms and illness. Ultimately, parents described this shift as helping them view cancer as something that was ‘part’ of their life, rather than all-consuming. Recent studies have established that parent perceptions about their child’s health and well-being are a strong predictor of parent distress during cancer treatment.^4,9,43–48 This serves to further contextualize findings from our moderation analysis for this trial that showed a buffering effect of AME on traumatic stress symptoms in a subset of parents who reported high distress in their child.²³

Cancer diagnosis and resulting treatment often disrupt the development of coping abilities in young children.² During early (2–5 years) and middle (6–8 years) childhood children are learning to cope more independently with less reliance on the parent.^36,37 Caregiver roles are also changing, moving from direct involvement in the child’s coping efforts toward indirect involvement – providing space and more cooperative forms of support. Behavioral distraction, doing something fun during a highly stressful and unavoidable event, is a primary and highly effective coping strategy for young children that involves appraisal, initiation, and attention regulation. However, in order to attain more robust forms of self-regulation, children need to practice their volitional capacities with the support of caregivers.³⁶ Parent interviews confirm that AME sessions provided a space where young children and parents could grow developmentally appropriate coping skills through resources, therapist support, and practice. And these skills transferred beyond AME sessions for both child and parent. Importantly, parents observed their child self-initiating music to regulate their attention and emotions during stressful medical events and recognized the importance of this for their child. Parents also expressed growth for themselves in learning ways to support their child’s coping efforts by providing resources (music kit materials) and indirect support (cooperative play).

Our primary aim was to better understand parents’ experience of the AME intervention. Primary limitations are related to the diversity of our study sample in terms of parent role and racial/ethnic identity. First, it is important to note that we had a high percentage of caregivers who identified as mothers and fewer who identified as a father or grandparent. Although our sample did include other caregivers, the portion was relatively small. Second, while our sample included caregivers from different racial and ethnic groups, increased representation of underrepresented and minoritized groups is essential to understanding whether an intervention is culturally meaningful and relevant for all families. Lastly, as a qualitative study, these results are not intended to be widely generalizable, but reflect the perspectives of the parents who participated.

This trial looked at the more immediate benefit of AME during brief in-patient hospitalization. Some patients were early in their diagnosis/treatment while others were further along. Additional research is needed to explore the benefits of AME over an early and longer course of treatment, and to ensure the intervention is culturally relevant and meaningful for all families. In our current trial, children are receiving the same chemotherapy regimen within a couple of months of diagnosis to increase the homogeneity of the timepoint and provide support earlier in the treatment trajectory.⁴⁹ Focus groups will explore perspectives of parents from underrepresented racial and ethnic backgrounds to ensure AME content and experiences are meaningful and relevant.

In summary, cancer treatment causes high levels of interrelated stress for parents and young children. AME uses a dyadic approach, with delivery by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in and independent use of music play for coping. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist-led sessions. The dyadic focus is appropriate given the inextricable nature of parent-child suffering and the central role parents play in helping young children learn self-directed coping strategies. Yet it is also novel in that most interventions target only one or the other. Accessible, music-based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.

Abbreviations:

AME

Active Music Engagement

TSS

Traumatic Stress Symptoms