Resources for the Families of Post-Hospitalized Children

By Anne Delleman, MusicWorx Intern

I have always been amazed by what children are able to learn within their first five years. To go from an eight pound infant that can’t see color or lift their head to a walking, talking and interacting individual within five years involves an incomprehensible amount of learning. Once I spent six months providing music therapy in a children’s hospital and with medically fragile children, I finally realized how sensitive this learning period was. I experienced first hand how traumatic experiences and atypical environments severely impact the acquisition of skills that I once viewed as automatic (for instance, swallowing), and how a disturbance in development early on can impact development for the rest of a child’s life. In my experience with chronically hospitalized and medically fragile children I also realized how impactful music therapy was in aiding the rehabilitation of a variety of developmental areas. Music was especially impactful during vital periods of rehabilitation such as the first few months post-hospitalization or post organ-transplant.

Here I’ll share my experiences providing music therapy with post-hospitalized children and why I decided to create a resource for parents and other therapists.

Ways I supported varying levels of development with music

Physical-motor skills:

• Used rhythm in music to que and motivate walking
• Used instrument play to motivate grasping, cross-body movements, positioning, head support, reaching, kicking and more
• Used structured music interventions to make movement exercises predictable, effective, and fun!

Oral and Communication Skills:

• Songs that mirrored chewing/eating movements (for example ch, ch, ch, ch, chew) for individuals learning to eat orally.
• Songs that mirrored consonant and vowel sounds the individual is trying to create
• Songs that prompted goal words (yes vs. no, all done, hello/goodbye)

Emotional Skills:

• Musical interventions that use elements of music to aid in emotional identification. For example, when singing about sadness, singing/playing an instrument slowly; when singing about being happy, playing fast and excitedly! 
• Use of calming music to aid in regulation and decrease of anxiety
• Use of songs to prompt coping-skills such as deep breathing

Social Skills

• Songs and instrument play activities to promote age-appropriate social skills such as sharing, joint-attention, greeting, and eye-contact. 
• Parent-child attachment

Every medically fragile child has varying needs within domains.  As the domains are interdependent, each domain is of equal importance. For example, if a child doesn’t gain the ability to swallow, they will frequently face later difficulty with speech and a lack of proper nutrition that can lead to physical delays (Malas et. al, 2017). If a child doesn’t have the ability to regulate their emotions and calm themselves in times of discomfort, their compliance in critical therapies such as physical therapy may be much lower (Hanson-Abromeit and Colwell, 2008).

The challenge

Young children post-hospitalization, especially when the hospitalization was long-term, need to be working on their development ALL the time, and music therapy can’t be there ALL the time. In fact, it was often difficult for me to be there even SOME of the time. Why?

• Out-patient music therapy is typically not covered by insurance.  Resounding Joy, MusicWorx’s nonprofit sister agency, provides free sessions funded by donations and grants. These resources are unfortunately limited, and many families that would significantly benefit from music therapy must be placed on a waitlist.
• When scheduling out-patient co-treats with physical therapy and occupational therapy, coordinating the schedules of two separate therapists with the schedule of a family of a medically fragile child was difficult. 
• The medically fragile children that I was seeing frequently had health complications that prevented them from attending scheduled music therapy sessions, co-treats, and music-therapy support groups. 

My Solution

In an ideal world, I every child that discharges from a long stay at the children’s hospital would have access to music therapy – but as this is not the case, I decided to create music resources for parents and other therapists to use whenever possible to target the rehabilitative areas I listed above. My goal was to compile a resource guide of original and piggy-back (using familiar melody with different words) songs that parents could EASILY learn and implement. In my guide I include:

• Lyrics to the songs
• Description of the goal that they target
• A recording of the song for the therapist/parent to familiarize themselves with the melody OR to play aloud with the child if appropriate
• Ideas for adaptations

While the resources are targeted for parents, they can also be useful for physical therapists, occupational therapists, speech-language therapists and other music therapists to implement and within their in-patient and outpatient therapies.

Why focus on parents?

For the last few decades, a wealth of literature has focused on the importance of family-centered care in pediatric treatment. Parents with medically fragile and hospitalized children often experience their own complex negative emotions that include grief, lack of control, and anxiety. As children often mirror the emotional states of their parents, allowing involvement in the treatment process can ease negative emotions in parents AND their children. Further, involving parents in the treatment process can increase parent-child bonding, which plays a critical role in development. Lastly, once a child enters out-patient treatments they are expected to be practicing therapeutic exercises at home. Compliance with these exercises can be difficult so providing parents with ways to make their exercises fun and motivating improves chances of successful practice!

While I strongly recommend a continued effort to provide greater access to outpatient pediatric music therapy, far-reaching access to our services is unfortunately not yet available. In the meantime, I hope that by creating resources that anyone can use,I can spread awareness about the effectiveness of music on pediatric rehabilitation. Even more importantly, however, I hope to be able to make a difference in the ongoing development of as many medically fragile children as possible. So please, whether you are a parent, nurse, music therapist, or student: pass these songs along!