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Caring for Caregivers

By Elizabeth Mendez, MusicWorx Intern

Caroline’s 28th birthday.

Family, given or chosen, shapes who we are and makes sacrifices to keep us moving forward. I grew up in a family with two parents and two older sisters. My middle sister, Caroline, has Autism Spectrum Disorder, among many other diagnoses. My eldest sister, Mary, showed me how to best interact and support Caroline. My parents have sacrificed their time, sleep, finances, and self-care to ensure that Caroline has the necessary resources to live a healthy, happy, and fulfilling life.

Growing up with parents who had to be almost full time caregivers inspired my final project for my internship. Caregivers are one of the most hard working and overlooked populations that music therapists serve. I have a special place in my heart for medically fragile pediatric patients, so I decided to focus on their caregivers. After reflecting on my parents’ behavior, however, and what I’ve witnessed working in children’s hospitals, caregivers clearly lacked time to participate in support groups or participate in programs that didn’t involve their children.

So I set out to create a flexible, easily accessible program for these underserved  caregivers.I decided to take my ideas online, the best platform to reach the most people on their own schedule. After talking with my internship supervisors and starting my research, I came up with a four-step outline:

  • Step 1: Gather participants
  • Step 2: Distribute informational flier, HIPAA form, and pre-assessment via email
  • Step 3: Release one video a week for four weeks
  • Step 4: Distribute post assessment via email  

Step 1: Gather participants

In order to gather comprehensive results, I recruited participants from across the nation. My goal was to have at least ten to twelve families participate in my program. After a month, I had only received some direct contacts of interested parents on the local level, from San Diego. Clearly, I needed to focus my energy in one place. I regrouped with my supervisors and met with some parents in person to give them the necessary information and resources.

Step 2: Distribute informational flier, HIPAA form, and pre-assessment via email

Of the eight participants, I received two and a half completed HIPAA forms and four responses to the pre-assessment by the end of August. While these were not the numbers that I was hoping for, I was thankful for any feedback from caregivers and considered the answers that were presented to me. The pre-assessment indicated:

  • 100% of parents were female and between the ages of 38-59.  50% of the children were female and 50% were male, all between the ages of 3-6.
  • The children had a wide variety of diagnoses, including Down Syndrome T21, global developmental delay, Double Inlet Left Ventricle, Chronic Lung Disease, Pulmonary Hypertension, Prematurity, and Chronic narcotic dependence.
  • Using a scale that ranged from none to severe, 75% of parents rated their anxiety/stress level at medium and 25% rated their anxiety/stress level at none.
  • Parents’ independent self-care practices were reading, attending church/praying, dancing, playing piano, exercise, walking on the beach, surfing, and therapy. Reported frequency ranged from everyday to a few times a week.
  • When given four options for preferences in length of videos (1-2 minutes, 3-5 minutes, 6-8 minutes, or 8-10 minutes), 50% of parents voted for 8-10 minutes and 50% of parents voted for 3-5 minutes.
  • Music’s current presence in the parents and children’s routines included playing music in the car, singing and playing instruments at home, and attending Shine and Sing group music therapy sessions, as well as individual music therapy sessions. (https://resoundingjoyinc.org/shineandsing-2/)
  • Specific requests for video topics related to coping with anxiety and relaxation techniques.

I received the majority of these answers after I finished and released my second video, so I wasn’t able to tailor the series to the specific needs stated by the parents. However, I remained flexible and carried on with my original outline despite the initial lack of responses.

Growing up with Caroline.

Step 3: Release one video a week for four weeks

I proceeded to release one video a week for four weeks:

  • Elongated Exhale (4:20)
  • Music & Movement (4:32)
  • Singing, Songwriting, & Positive Affirmations (4:28)
  • Imagery (8:29)

The lengths of the videos varied slightly to honor the responses I received from the pre-assessment, since some parents had more time for longer videos. The videos could be accessed from any device and didn’t require downloading. Along with the link, I included research articles with the second and third videos for further reading if parents were interested. The third video also included an additional resource for fill in the blank songwriting so that parents and children had a template for the idea I presented.

Step 4: Distribute post assessment via email

After the last video, I sent the post-assessment. I received responses from two participants this time:     

  • 100% of parents reported medium anxiety/stress.
  • The elongated exhale was voted most helpful/applicable intervention/video for the parents and their children.

I learned a lot from creating and carrying out this project. Although I didn’t reach as many caregivers as I initially hoped for, I know the videos contributed positively to at least one family’s life based on the following feedback from the additional comments section in the post-assessment:

This gives me additional tools to use anytime, anywhere. We love using the breathing video tips, like having a picture of a cake to blow out, since my child is visual, and playing music to breathe to. The imagery video is great to do before bed and just calm the mind. The positive affirmation video we haven’t written the songs yet, but will this week, and it’s just a good reminder to use them daily. I also love the ``I’m like you`` song because you can use it to get moving or calm down. Thank you for sharing all of this information!”

Lessons Learned

Of the many lessons I learned, I can offer the five most profound ones:

  • Be intentional about balancing your time between the preparation, creation, and distribution stages of your content. I spend far too much time in the preparation stage and felt crunched for time in the latter two stages. I filmed, edited, and released each video every weekend for the allotted four weeks. I released two of the videos late because I couldn’t find a balance between all of the other expectations of my full time internship. The filming and editing schedule was exhausting and not sustainable.  
  • Plan your brand. When I decided to release my videos via the Resounding Joy Youtube channel, I watched some of the videos already posted on the channel to learn where to implement the Resounding Joy logo. My research also informed the style in which I edited my videos so that they were conducive to the rest of the videos on the channel.
  • Consider the way your target audience may view your content. My internship director, Barbara Reuer, gave me valuable feedback about audience retention after watching my first two videos. The background in first video is conducive to the topic– a relaxation exercise with a peaceful nature scenery. My second video was a movement activity that had a desk with cluttered chords and items everywhere. The change in background, as well as the lack of organization was distracting and took away from the message of the video.  
  • If possible, meet in person with interested participants first to give them the necessary resources (i.e. HIPAA form and pre-assessment). Instruct them to fill out documentation and return it to you immediately. I believe that the lack of responses I received was partially due to giving parents everything virtually and having too much leeway of when I needed documentation returned to me. Because their time is already limited, it is hard to expect them to make time to complete the necessary materials!
  • The therapist-client connection and trust that is crucial to music therapy is challenging to replicate virtually. After talking with one of my supervisors at Rady Children’s Hospital, Rachel Gant, and considering the answers to the post-assessment survey, a mix of in-person groups and online resources may the most effective way to establish and retain rapport between the therapist and the clients. She suggested a format of a twelve week program that started with an in-person group in the first week, followed by virtual outreach the second week, and alternated accordingly.
  • Make all virtual materials available in other languages. Because my participants ended up being primarily from San Diego, I realized after my first video that I needed to make my materials accessible in Spanish. I do not speak fluent Spanish so I had to rely on one of the Resounding Joy music therapists, Paty Sevener, to proofread my translations. Producing translations at the same rate that I was producing content was challenging. I still have lots of subtitles to add at the time I’m writing this. I feel that my lack of ability to provide timely translations alienated some families.

My wish for this project continuing forward was that the information I collected could be used to inform similar endeavors for interns and employees of Resounding Joy. In my last week of internship, my wish came true! My project, now renamed “Caring for Caregivers,” will be a virtual course available to all members of MusicWorx’s new virtual platform, the Hub. All of my videos and resources will be available to members in one, convenient location. Additionally, the Hub has a multitude of other online courses and music therapy resources for any and everyone — students, professionals, recipients of music therapy, or interested minds!

Resources

  • Clements-Cortés, A. (2017). Singing and Vocal Interventions in Palliative and Cancer Care: Music Therapists’ Perceptions of Usage. Journal of Music Therapy,  54(3), 336–361. https://doi.org/10.1093/jmt/thx010
  • Grahn, J.A., Watson, S.L. (2013). Perspectives on Rhythm Processing In Motor Regions of the Brain. Music Therapy Perspectives. 31(1), 25–30. https://doi.org/10.1093/mtp/31.1.25
  • Hyung Lee, J. (2016). The Effects of Music on Pain: A Meta-Analysis. Journal of Music Therapy. 53(4), 430–477. https://doi.org/10.1093/jmt/thw012
  • Lim, H.A. (2010). Effect of “Developmental Speech and Language Training Through Music” on Speech Production in Children with Autism Spectrum Disorders. Journal of Music Therapy. 47(1), 2–2., https://doi.org/10.1093/jmt/47.1.2
  • Lively, K.J. (2014). Affirmations: The Why, What, How, and What If? Psychology Today.   https://www.psychologytoday.com/us/blog/smart-relationships/201403/affirmations-the-why-what-how-and-what-if
  • Millett, C.R., Gooding, L.F. (2017).Comparing Active and Passive Distraction-Based Music Therapy Interventions on Preoperative Anxiety in Pediatric Patients and Their Caregivers. Journal of Music Therapy. 54(4), 460–478.  https://doi.org/10.1093/jmt/thx014
  • Murrock, C. J., & Higgins, P. A. (2009). The theory of music, mood and movement to improve health outcomes. Journal of Advanced Nursing, 65(10), 2249–2257.
  • Robb, S.L., Nichols, R.J., Rutan, R.L., Bishop, B.L., Parker, J.C. (1995). The Effects of Music Assisted Relaxation on Preoperative Anxiety. Journal of Music Therapy. 32(1),  2–21. https://doi.org/10.1093/jmt/32.1.2  
  • Shoemark, H. (2018). Time Together: A Feasible Program to Promote parent-infant Interaction in the NICU. Music Therapy Perspectives. 36(1), 6–16. https://doi.org/10.1093/mtp/mix004
  • Snow, S., Bernardi, N.F., Sabet-Kassouf, N., Moran, D., Lehmann, A. (2018). Exploring the Experience and Effects of Vocal Toning. Journal of Music Therapy. 55(2),  221–250. https://doi.org/10.1093/jmt/thy003
  • Thaut, M. H. (2013) Entrainment and the Motor System. Music Therapy Perspectives. 31(1), 31–34. https://doi.org/10.1093/mtp/31.1.31

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