View of A Survey of Parents' Use of Music in the Home With Their Child with Autism Spectrum Disorder: Implications for Building the Capacity of Families

[Research Voices: Quantitative Studies]

A Survey of Parents' Use of Music in the Home With Their Child with Autism Spectrum Disorder: Implications for Building the Capacity of Families

By Grace Anne Thompson

Abstract

Preschool aged children with disabilities including Autism Spectrum Disorder (ASD) typically receive early childhood intervention services that adopt a family-centred approach to supporting child and family outcomes. Family-centred approaches aim to build the capacity of parents to support their child’s development immediately and into the future, and therefore offer parents a variety of resources. One indication of whether these resources have been relevant and useful to the family is to consider how well they have been incorporated into everyday life. This study surveyed 11 families of children with ASD aged 3- 6 years who were receiving music therapy as part of a broader study, and asked them to keep a journal of their use of the music experiences modelled within the sessions during their typical week. It is the first study to ask parents of children with ASD to quantify the time spent in music experiences. Results showed that families can and do use music to engage with their child with ASD, with a total median time of 2.8 hours per week recorded. The total average time comprised four categories of music experiences, including singing, singing and playing instruments, improvising with instruments, and listening to music. Of these, singing and listening to music were the most popular (37% each of the total time) and were best maintained at follow up. These results provide preliminary support demonstrating that music therapy could be a successful way to support capacity building in families by encouraging them to embed therapeutic music experiences into their daily life. Further and more detailed research is needed to investigate this central tenet of family-centred practice, particularly in regards to how families’ use of music experiences change over time.

Keywords: families, capacity building, music therapy, early childhood intervention.

Introduction

For more than 20 years, the Early Childhood Intervention (ECI) sector has embraced family-centred practice principles and viewed the family unit as the ‘client’ (Dempsey & Keen, 2008; Dunst & Trivette, 2009). Children are usually referred to ECI services soon after diagnosis, where the family’s grief of their lost expectations for the complete health and ability of their child is still unfolding. The child’s diagnosis therefore impacts the entire family unit as they start to understand and try to come to terms with the reality of their situation (Bennett et al., 2012; Dempsey, Keen, Pennell, O'Reilly, & Neilands, 2009; Osborne, McHugh, Saunders, & Reed, 2008). Music therapists have previously described family-centred practice as a complex landscape for practitioners to navigate, with a multifaceted intertwining of child and parent need (Shoemark & Dearn, 2008).

The preschool years (6 years and under) are also a critical developmental time and for children with disabilities, the earlier support is provided the better the developmental outcomes (Prior, Roberts, & Rodger, 2011). Children with disabilities under the age of six rely heavily on their family and carers to scaffold learning opportunities and provide developmentally rich environments (Roper & Dunst, 2003). For young children with conditions that impact their capacity for social interaction, such as ASD (Lord, 2011), family-centred practices are advantageous in order to promote generalisation of skills that these children often find so challenging (Prior et al., 2011). An ecological or systems approach to therapy is recommended so that the learning environments and communication partners of these children can create developmentally rich learning opportunities within their typical routines (Schertz & Odom, 2007). Therefore, ECI organisations in many parts of the world adopt a family-centred philosophy which is characterised by working collaboratively and respectfully alongside parents (Dunst & Trivette, 2009).

Family-centred approaches challenge traditional expert models where practitioners often provide a discrete service that requires professional expertise to administer (Davis, Day, & Bidmead, 2002). The appropriateness of expert models has been contested in ECI given the emphasis in developmental theories on the importance of natural learning opportunities (Dunst et al., 2001; Sheldon & Rush, 2001). For this young age group, it is generally accepted that expert interventions “are likely to be so limited that the frequency and amount of intervention cannot possibly optimise the number of learning opportunities afforded children; hence the importance of the transfer of knowledge and skills to others.” (Roper & Dunst, 2003, p. 218). Therefore, family-centred practice strives to support the family to be better able to support the child’s development throughout the day and across contexts.

Empowerment is consequently a core principle of family-centred practice, which in this context refers to the opportunities family members have to “acquire knowledge and skills to better manage and negotiate daily living in ways positively affecting parent and family well-being” (Dunst & Trivette, 2009, p. 122). A tangible expression of this principle is building the capacity of the family through identifying new and existing resources they can then use to meet their needs now and into the future. The emphasis on capacity building means that family-centred practice can be seen as having a sustainable orientation (Bolger & McFerran, 2013).

Sustainable Orientation Towards Music Therapy Programs

Sustainable orientation is a new term for music therapy, introduced very recently by Bolger & McFerran (2013) in their reflections on short term music therapy work in developing countries. The term highlights the conscious intentions of music therapists to ethically prepare for the therapist’s exit so that there might be ongoing benefits for the community (Bolger & McFerran, 2013). While the terminology, awareness and implications of these principles are still evolving, music therapists have described sustainable practices such as the transfer of knowledge and skills to the family, since the early days of the profession and especially in work with young children with disabilities. Alvin’s pioneering descriptions of her work with children with ASD noted that music "created a bond between parent and child, or a bridge between them" (Alvin, 1978, p. 113) and that this was more likely to occur when music "had a place in the home" (Alvin, 1978, p. 113). Music therapists have also described many benefits of including parents in music therapy sessions including; parents developing skills to assist their child’s development (Archer, 2004; Chiang, 2008; Pasiali, 2010), increased social responsiveness in the child (Thompson, McFerran, & Gold, 2013; Wimpory, Chadwick, & Nash, 1998; Woodward, 2004), and improved closeness in the parent-child relationship (Allgood, 2005; Archer, 2004; Horvat & O'Neill, 2008; Oldfield & Flower, 2008; Thompson & McFerran, 2013).

More recently, a large study of 358 families, 95 of whom had a child with a disability, found that 90% of parents who participated in a 10 week community based group music therapy program reported using the program CD of songs at home with their child (Nicholson, Berthelsen, Abad, Williams, & Bradley, 2008). Similarly, Warren and Nugent (2010) interviewed 12 parents who had participated in a 10 week group music therapy program for preschool aged children with developmental disabilities. All of the parents reported that they were now using more music based activities at home with their child, such as singing and playing with instruments, to provide developmental play opportunities.

Supporting a child with social communication impairments to engage with others necessitates setting up an interaction that both partners find enjoyable, and music making experiences can provide unique opportunities for mutually enjoyable interactions (Holck, 2004a). From an improvisational music therapy viewpoint, music making places an emphasis on interpersonal engagement and has therefore been compared theoretically to mother-infant social play (Kim, Wigram, & Gold, 2008; Stern, 2010; Wigram & Elefant, 2009). Similar to these early social exchanges, music therapy techniques use a balance of structure and unpredictability to promote shared affect, attention and relatedness (Holck, 2004b; Kim, 2006; Kim et al., 2008; Wigram & Elefant, 2009).

Personal Reflections on Sustainable Practices

In my own work as a music therapist with preschool aged children with ASD and their families, my overarching aim has been to support the child and parent to connect musically, with the expectation that this experience will nurture their ability to connect with each other in different contexts. I resonate with Ansdell’s (1995) description of music therapy as creating opportunities for ‘meeting’. However, fostering this social connection within music making is complex, as “meeting cannot be forced or manufactured – it simply happens when the level of listening and consciousness is right and when the music acts like gravity, pulling the players into relationship.” (Ansdell, 1995, p. 74). I have spent many hours as a music therapist supporting family members to ‘meet’ each other through the use of songs, instrument playing and movement to music in order to facilitate interpersonal engagement between them. Adopting a sustainable orientation within family-centred work means that I see my role as being quite diverse. On the one hand, I want to directly support the child to engage with their parent through providing motivating musical experiences which aim to promote child initiated interactions, and on the other hand I want to support the family to be able to interact musically at a level they will be able to sustain without me (for detailed explanation of my practice approach, see Thompson, 2012a).

Music in the Home

Anecdotal reports of increased use of music in the home following participation in music therapy are encouraging, but as yet there have been no studies that have attempted to quantify this phenomenon with children who have disabilities. However, surveys completed by families of typically developing preschool aged children investigating how music is used in the home reveal that many parents sing with and play recorded music for their children as part of their typical week (Custodero, 2006; Custodero & Johnson-Green, 2003; Custodero, Rebello Britto, & Brooks-Gunn, 2003; de Vries, 2009; Ilari, Moura, & Bourscheidt, 2011). Custodero and Johnson-Green (2003) surveyed 2,250 parents of typically developing infants aged 4 to 6 months old in the US and found that 64% of parents played recorded music for their child on a daily basis, and 69% of parents sang to their child daily. Only 3% and 6% of parents reported never playing music or singing to their child respectively. In a further survey of 2,017 parents, this time with children aged up to 3 years old, results were similar with 60% of parents reporting that they sang and/or played music daily with their child (Custodero et al., 2003). A subsequent detailed case series investigation with 10 families asked parents to keep a journal of their musical play with their 3 year old children over several days (Custodero, 2006). Importantly, results revealed that parents typically embedded made-up and pre-composed songs into their daily routines rather than setting aside separate time to sing with their child.

Given the collaborative nature of family-centred approaches, and the overarching aim to build the capacity of parents to meet the family’s needs, the question of whether parents take-up any of the strategies modelled within music therapy sessions is an important one. While music appears to be a natural part of family life with preschool aged children, I have always been mindful of the potential tension that music brings to family-centred work. On the one hand, live music making can be seen as a most natural and intrinsic part of parent-child interactions (Stern, 2010; Trehub, 2003) and therefore a common-sense intervention to promote child development. On the other, music in my country (Australia) can be viewed as a highly specialised, expert set of skills, resulting in some families believing that they are not qualified enough to provide music experiences for their child (de Vries, 2009). While the evidence suggests that families of typically developing young children use music regularly in their daily routines, we know much less about how families with children who have special needs use music. Perhaps the natural and intrinsic use of music in parent-child interactions is interrupted when the child has ASD and limited capacity for social communication. In my endeavours to provide music resources that families could continue to use without me, I wanted to know whether they incorporated the music activities from our sessions into their everyday life as indicated anecdotally in previous music therapy studies. An understanding of the type and amount of music activity occurring in the home as part of everyday life is paramount for music therapists aiming to build the capacity of the family. Therefore, the purpose of this study was to determine whether parents of children with ASD used the music activities outside of the music therapy sessions, and if so, how much time did they spend on these activities during the week?

Method

The research question was one of several being investigated as part of my PhD research (Thompson, 2012b). This larger study was a randomised controlled trial investigating the effects of family-centred music therapy on social communication skills and relationship (see published results: Thompson & McFerran, 2013; Thompson et al., 2013). For the RCT, 23 children were randomised to either home-based music therapy sessions (n = 12), or standard care (n = 11). Ethics approval was granted by the University of Melbourne (#0932487) and the Victorian Department of Education and Early Childhood Development, Australia (#2009_000398).

The study presented here was a smaller investigation looking specifically at the 12 children receiving music therapy, and therefore was not part of the RCT. A survey of the use of music in the home was developed and only completed by families receiving music therapy. The survey took the form of a musical journal.

The Musical Journal

Parents were asked to keep a record of how much, how frequently, and what type of music activities they did with their child without the music therapist. Each week, parents filled in a record sheet (Appendix 1) estimating how much time they spent in minutes participating in each of four specified activities with their child: singing; singing with instruments; improvisation; and listening to music with their child. These activities were aligned with those music therapy methods typically part of each session, with the addition of listening to music. Parents were asked to keep the musical journal for 14 weeks of the 16-week program.

There was provision on the sheet to record in minutes how much time they spent on each day of the week participating in each activity. The record sheet was not presented to parents as a prescriptive list of activities, but as a survey. The families therefore did not have to adhere to a set of ‘homework’ tasks, and parents were simply asked to record their musical involvement with their child.

At the end of each session, the music therapist collected the previous week’s record sheet from the parent. If the parent had forgotten to fill it in they were encouraged to do so retrospectively so long as they felt they could reliably estimate the time spent in the activities. A note was made at the bottom of the sheet if it was filled in retrospectively, with 15% of the weekly record sheets falling into this category. Data was missing for 7% of the weeks, as there were times when parents did not feel they could retrospectively fill in the sheet with accuracy, as well as weeks where no music therapy session had occurred.

After an eight week follow-up period during which time there had been no music therapy sessions, parents were sent a further record sheet in the mail. They were asked to estimate how much time had been spent participating in each category of activity per week with their child since the music therapy sessions had finished.

The Participants

Eleven out of the 12 families receiving music therapy completed the study, with one family dropping out due to the child and parent falling seriously ill. Each family had at least one child with ASD aged between three and six years old (mean = 44 months; range = 36-60 months), and parents and other family members were encouraged to participate in the music therapy sessions along with the children. Three of the families had English as a second language, and four families regularly included siblings in the sessions. Five of the parents had completed 11-12 years of education, five had completed further vocational training, and one parent had a University degree (Table 1).

Table 1. Overview of participants

 
 
Parent
Family
Child’s Age[1] (months)
Gender
SRS[2]
Sibling Participation
Mean minutes per week using music activities
ESL
Education[3]
A
52
F
83
No
640
Yes
Year 11-12
B
49
F
133
No
44
No
Year 11-12
C
37
M
74
No
47
No
Year 11-12
D
47
F
92
Yes
425
No
Tertiary training
E
55
M
90
Yes
59
No
Year 11-12
F
46
M
86
No
78
Yes
University degree
G
41
M
85
No
98
No
Tertiary training
H
36
M
72
No
169
No
Tertiary training
I
41
M
87
Yes
272
Yes
Year 11-12
J
39
M
91
Yes
507
No
Tertiary training
K
48
M
81
No
293
No
Tertiary training

Note. ESL = English as a second language;
[1]Age at first contact
[2]SRS = Social Responsiveness Scale T scores where >76 indicate autism in the severe range.
[3]Highest level of education reached by the participating parent. Tertiary training is post year 12 vocational study that is not a University Degree, e.g. hairdressing.

 

 

The Music Therapy Sessions

The music therapy sessions were held weekly, and typically ran for 30 to 40 minutes. The broad aims for the sessions were to promote social interactions between the child with ASD and their families through engagement in musical interactions. A flexible protocol was developed so that sessions could be tailored to the interests of the child and family. Three core methods were used in most sessions, namely: 1) pre-composed play songs; 2) structured instrument songs (both improvised and pre-composed); and 3) free improvisation. Within these methods, I encouraged the parent to participate as fully as they wished. We worked collaboratively and acknowledged each other’s complementary expertise: the parent in their knowledge of their child; and my knowledge of ASD and music therapy methods. Through active participation, parents had the opportunity to become familiar with the methods and build their capacity to interact musically with their child. A model for the sessions has been previously published (Thompson, 2012a, 2012b), which explains the conditions for interaction I strived to facilitate within music making. These conditions included attuning to the child’s mood and behaviour, following the child’s lead and interests, presenting with positive affect and a playful attitude, and having appropriate expectations of the child based on an understanding of their developmental stage.

Data Analysis

In total, the 11 families completed 120 weekly record sheets over the 14 week data collection period (mean per family = 10.9). I adopted Custodero and Johnson-Green (2003) categories of frequency in order to analyse the amount of musical activity in the week as follows: 1) never; 2) once a week; 3) more than once a week but not daily; and 4) daily. The mean weekly time of musical engagement for each family was calculated in minutes per week by adding together the time recorded and dividing by the total number of completed weekly record sheets.

Results

Frequency of Musical Engagement

Parents overall reported that they used music activities with their child with ASD on a weekly basis in the home. There were 64 weeks (53%) where parents recorded daily music activities with their child, and 50 weeks (42%) where music activities occurred more than once a week but not daily. There were only 5 weeks (4%) out of the 120 where families did not record any music activity, and one instance where a family recorded only one day of musical activity with their child for that week.

Figure 1 shows the distribution of the families’ weekly mean time spent engaging in music activities with their child. There is large variability in the data, ranging from 44 minutes to 640 minutes (or 10.65 hours) per week (M = 247 minutes). With such variability, and a distribution that appears to be skewed, the median may be more representative of the group. The median total time spent per week was 169 minutes (or 2.8 hours).

Figure 1. Weekly mean time in minutes for each family.
Figure 1. Weekly mean time in minutes for each family.

 

Preferred Type of Musical Engagement

The mean time spent in each of the four categories of music activity was calculated in a similar way. Each week, parents spent 37% of their mean total music engagement time (89 minutes) singing with their child, 37% of their time (89 minutes) listening to music with their child, 15% of their time (36 minutes) singing and playing instruments with their child, and 11% of their time (25 minutes) improvising with instruments with their child (Table 2).

Table 2. Weekly Time in Minutes of Musical Engagement by Category of Activity
Mean
SD
Median
Minimum
Maximum
% of total time[1]
MT
Follow Up
MT
Follow Up
MT
Follow Up
MT
Follow Up
MT
Follow Up
MT
Follow Up
Singing
89.0
84.0
85.4
60.8
47.0
70.0
11.0
30.0
236.0
210.0
37
48
Singing and playing instruments
36.0
17.0
38.1
25.1
18.0
5.0
0.0
0.0
119.0
60.0
15
10
Improvisation with instruments
26.0
3.0
27.5
5.1
14.0
0.0
0.0
0.0
94.0
15.0
11
2
Listening to music
89.0
69.0
86.4
69.5
39.0
30.0
0.0
0.0
196.0
170.0
37
40
Total time spent in activities
247.0
173.0
219.6
148.3
169.0
95.0
44.0
30.0
640.0
410.0
Note: n =11; MT=music therapy
[1] Percentage based on the mean.

Follow-up Data

Eight weeks after completing the music therapy program, families were sent another survey in the mail. They were asked to estimate how much time they had spent participating in each of the four categories per week since the completion of the music therapy sessions. Two of the 11 families did not return their follow-up data. Figure 2 is a Box Plot showing the median, quartiles, range and outliers. The bold line connects the means for each response. As seen in Figure 2, parents reported lower weekly mean activity levels for all variables at follow-up. Singing remained the most stable, with parents reporting a mean drop of only 4 minutes per week. The biggest drop was for improvisation, falling from 25 minutes per week to 3 minutes (Table 2).

Figure 2. Boxplot of time spent in each activity. Data during music therapy program compared to follow-up 8 weeks after music therapy program ceased.
Figure 2. Boxplot of time spent in each activity. Data during music therapy program compared to follow-up 8 weeks after music therapy program ceased.

 

Discussion

In the context of Early Childhood Intervention services where building family capacity is a core principle within a sustainable orientation to practice, the extent of take-up of strategies in the home and community is an imperative aspect to document. Previous studies have anecdotally reported that parents do use music activities in the home environment following parent participation in music therapy programs (Chiang, 2008; Nicholson et al., 2008; Pasiali, 2004, 2010; Warren & Nugent, 2010). However, to my knowledge, there have been no attempts to quantify or classify what parents do musically with their young children with special needs in between music therapy sessions. The musical journals completed in this project are an important first step in determining whether families incorporated the music activities from music therapy sessions into their everyday life, and to what extent.

The results of this study echo the large study by Custodero et al. (2003) of families with typically developing 3 year old children. Similarly here, the parents participating alongside their child with ASD in music therapy also reported using a variety of the music activities with their child. Singing and listening to music were the most popular activities, and singing was best maintained at follow-up. Over the 14 week data collection period, parents reported daily musical engagement with their children 53% of the time, and more than once a week but not daily 42% of the time.

Previous literature with children with social communication impairments has highlighted the fact that musical interactions are mutually enjoyable for the child and adult alike (Holck, 2004a, 2004b), and the importance of joy in motivating social communication engagement (Kim, Wigram, & Gold, 2009). The survey data presented here cannot directly support the notion that musical engagement was mutually enjoyable or engaging for the parents and children, however the differences in time spent in each activity provides some preliminary insights into this topic. The popularity of singing and listening to music recorded by parents in this study may mean that these activities were the most enjoyable of the four categories. In contrast, and despite being a frequent method in music therapy sessions, improvisation with instruments was the activity least employed by parents in the home. Perhaps this finding reflects that of de Vries (2009), who found that some parents thought children were “just making noise” (p. 400) when they played with instruments, suggesting that they did not view the activity as mutually engaging. De Vries’ findings may be relevant to these results, and perhaps parents did not find instrumental activities as pleasurable, or possibly they were more difficult to embed into their daily routine compared to singing and listening to music.

Limitations

While this survey data makes an important first step in reporting on parents’ ability to use therapeutic music activities in the home without a music therapist, the findings are limited by a small sample size. The data recorded in the musical journals were approximations of times which may affect accuracy, and families may have felt compelled to record something in the journal given that they handed it to me each week. While the survey provides important information about quantity of music activity in the home, it does not provide insight into the quality of the parent-child interaction. The study is also limited by lack of comparative data. Future studies might also compare how much music parents of children with ASD use, when they are not supported by music therapy. Further, I did not take a baseline of the use of music in the home, and so cannot judge the change in use of music as a result of participating in music therapy. The families participating in this research volunteered to participate in a music therapy study, which may mean that they were musically active families to begin with.

New Understandings: Collaborative Music Therapy Practices With Families

This study indicates that parents of children with ASD were able to incorporate music therapy activities into the family home, and suggests that music therapy can successfully support the family-centred agenda: to build the capacity of the family. Similar to Bolger and McFerran’s (Bolger & McFerran, 2013) definition of sustainable orientations to music therapy, family-centred music therapy endeavours to impact the family “beyond the life of the music therapist’s direct involvement.”

A sustainable orientation to music therapy is closely aligned with collaborative practice, which in the ECI context means acknowledging the parent as the most important influence on the child’s development, and respecting the parent-child relationship. A challenge in my work has been to articulate what this collaboration with parents might look like. Collaboration with parents is more than just following the lead of the parent. My opinion here is influenced by Rolvsjord’s (2004) definition of resource-oriented music therapy, where she highlights the importance of the therapist contributing their own resources to the work. Therefore, I may offer options and ideas to the parent to support what they want to achieve with their child. Of course, determining the best moment to share my resources with parents takes sensitivity, and is prone to error.

To explain this further, there are times in my work with families when I ‘step back’ and times when I ‘step forward’; evoking images of dancing. Dancing has previously been used as a metaphor for collaborative practice (Davis et al., 2002), and it also reverberates with the descriptions of early social play between parents and infants (Stern, 1977). This is not to say that I treat parents as if they are infants; rather, I find it fascinating that there might be a parallel process being enacted. The way I work with parents is similar to the way I hope they will work with their children: sensitively attuning and responding to the moment; stepping forward and back; following and leading. At the heart of this is a strength based philosophy where the primary aim of working collaboratively with parents is to promote their sense of self-efficacy (Davis et al., 2002).

Part of my role therefore is to ensure that the music therapy methods are accessible for parents so that they and other family members can actively participate in the sessions. The survey results suggest that parents did find the music therapy methods they experienced within the sessions accessible and adaptable.

Applications Beyond Music Therapy

This study provides some insight into what makes family-centred collaborative practices successful in terms of capacity building that stretch beyond the discipline of music therapy. Certain elements of this style of practice are relevant to all ECI workers, such as: providing a period of regular, in-home sessions that address the needs of the family as a unit; providing parents with resources to support the up-take of ideas; and the use of activities that have the potential to be mutually enjoyable for the parent and child. Music therapy has much to offer ECI, as music activities provide opportunities for the whole family to participate together. The predominant use of singing and listening to music by parents in this study may help to guide music therapists and others in designing programs and resources that parents can use independently with their child.

Conclusion

The musical journals of these 11 families showed that parents of young children with ASD can and do use music activities to engage their child in the home. Singing and listening to music together were the most highly reported activities, suggesting that these were possibly the most accessible, the easiest to embed into the families’ daily routine, and/or perhaps the most mutually enjoyable. These findings support the notion that music is a natural part of family life with preschool aged children, and therefore that music therapists have much to offer families of children with disabilities when this natural ability to interact musically may have been interrupted. Music activities seem to be a feasible way to embed developmental learning opportunities into the child’s everyday life. Further research is needed to determine the extent that participating in music therapy influences the amount and/or type of musical activity in the home.

Acknowledgements

The author appreciatively acknowledges the participating parents and children, as well as the contributions of Prof. Tony Wigram to the design of this study, and A/Prof. Katrina McFerran and Prof. Christian Gold for their supervision.

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Appendix

Record sheet (pdf)
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