Megan Sweeney, Ashley Matejka, Kimberly Poston Miller, and Lonnie Zeltzer
Chronic pain is a complex experience resulting from biological, psychological, and social interactions (Tracey & Bushnell, 2009). The global burden and cost of pediatric chronic pain are tremendous – amounting to $635 billion annually (Bhatt et al., 2020). However, the paucity of multidisciplinary pain clinics for teens with chronic pain leads to multiple points of subspecialty evaluations and often failed treatments focused on specific organ systems. A recent study showed that adolescents suffering from chronic pain will experience a 34% decrease in the likelihood of graduating high school, a 17% reduction in achieving a college degree, a 20% decrease in receiving employer-provided insurance benefits, and a 13% reduction in the likelihood of employment related to long-term career goals (Murray et al., 2020). These findings underscore the urgent need for support and intervention, as these roadblocks to education and professional aspirations are not just individual challenges but a greater societal issue calling for collective action.
There are a variety of organizations offering online resources that provide support to children and teens with chronic pain: Pediatric Pain Warriors, the teen support program for the U.S. Pain Foundation (https://uspainfoundation.org/pediatricpainwarriors/), Comfort Ability, a program based at Boston Children’s Hospital providing online support and in-person cognitive-behavioral workshops for parents and teens with chronic pain, also incorporated by other pain centers globally (www.thecomfortability.com), SKIP (https://kidsinpain.ca/) the government supported Canadian program which educates families and clinicians about pain, The MEG Foundation, which provides information necessary to manage pain and medical anxiety in children in addition to clinician training resources, but without online workshops or programming (https://www.megfoundationforpain.org/), and ChildKind, focused on improving care children receive for pain in the hospital (https://childkindinternational.org/). An increasing number of digital health interventions for pediatric pain conditions, such as WebMAP have also been developed (Palermo, 2020; Palermo et al., 2022).
Creative Healing for Youth with Pain (CHYP) is a nonprofit that empowers, educates, and supports youth between ages 13 to 24 years experiencing chronic pain along with their families. CHYP provides free services, relying on donations to develop and administer non-clinical interventions informed by rigorous pain science. CHYP’s goal is to help individuals rethink chronic pain, engage in creative healing experiences, and receive education and peer support. CHYP leverages the advantages of online interventions, including reduced barriers to healthcare like cost, location, socioeconomic status, and transportation (Birnie et al., 2021; Darnall et al., 2023). CHYP also utilizes the power of group-based programming. CHYP is unique among online programs for pediatric pain in its focus on creativity and the arts as a route to managing pain successfully.
Figure 1. Current CHYP Youth Programs
While studies show meditation, yoga, hypnosis, and physical therapy can help improve function and well-being in teens with chronic pain, there are an increasing number of studies indicating the value of creative arts (Deng & Cassileth, 2015), e.g. music, writing, and art. Interventions focused on creativity and community support help reduce pain and isolation (Angheluta & Lee, 2011). Johnson et. al. (2023) found creative activities aid chronic pain management and reduce mental distress by strengthening the mind-body connection. Often it is easier for teens to express negative emotions indirectly through music lyrics, art, dance, and other forms of expression. Creative activities carried out in groups can help engage isolated youth in stronger social relationships, reduce stress, and allow youth to develop a deeper appreciation for themselves and their surroundings. CHYP provides guided creative activities to harness the power of the creative brain and utilize neuroplasticity. On-demand online creative healing experiences and live virtual camp sessions are two ways that CHYP helps focus youth on their creative processes to reduce pain, strengthen the mind-body connection, and stimulate the development of new neural circuits.
Prior research has shown expressive and creative writing for 15-20 minutes can be helpful in healing (Pennebaker & Beall, 1986; Pennebaker & Chung, 2011). Specifically, expressive writing about traumatic, stressful, or emotional events has been associated with improvements in physical and psychological health including reductions in depression and anxiety (Baikie & Wilhelm, 2005). Participating in creative arts and expressive offerings through CHYP allows youth with pain to feel enhanced control over their minds and bodies, via a non-clinical intervention.
Engaging in creative therapeutic experiences in a group setting has added benefits over individually focused interventions. Teens with chronic pain often become isolated via school absenteeism and reduced participation in social and physical activities. Social support from teens experiencing similar issues provides positive experiences, reducing feelings of isolation (Forgeron et al., 2010; Kavanagh et al., 2023; López-Martínez et al., 2008; Ross et al., 2018). In keeping with the framework of the biopsychosocial model, CHYP provides monthly Zoom meetings for youth, ages 13-24, to develop connections to peers in similar circumstances, and a live, virtual creative arts summer camp to address these feelings of isolation. Similarly, it provides peer support to caregivers through a psychologist- led “Creating Bonds” series in a live, online format to foster social interaction for those experiencing similar challenges.
CHYP provides evidence-based education about pain and associated contributors in a way that makes sense to those affected by chronic pain. The program seeks to ease anxiety resulting from diagnostic uncertainty which often drives families toward frequent visits to numerous specialty care providers. These visits are responsible for increasing healthcare spending in addition to contributing to depression, anxiety, feelings of helplessness, and school absenteeism (Bateman et al., 2023; Eytan & Elkis-Abuhoff, 2013; Soltani et al., 2022; Wildeboer et al., 2023). Since there are many functional pain disorders for which subspecialists have not found the root causes, this often results in confusing explanations (Jordan et al., 2023; Neville et al., 2021). CHYP seeks to clarify patient understanding of these disorders, to reduce uncertainty for many with “doctor-seeking” behaviors (Beveridge et al., 2024; Neville et al., 2020; Soltani et al., 2022). Through the enhancement of teens’ self-agency, CHYP strives to assist in reducing uncertainty and minimize parents’ “diagnosis-seeking” behaviors. Education that “makes sense” is a significant contributor to recovery and function (Sun et al., 2023). CHYP seeks to address this through virtual meetings and webinars for parents with clinical experts offering supplementary education. Additionally, weekly blogs and vlogs provide parents with further information and education.
CHYP Closes the Gap in Comprehensive Pediatric Pain Management
CHYP does not provide clinical treatment but supports clinicians in scientifically based value-added ways. While organizations similar to CHYP exist, CHYP’s focus on creative arts is unique, addressing both pediatric pain psychology and the dynamics of parent-child interactions. The importance of addressing challenges faced by parents as their children transition to adulthood cannot be understated (Lunde et al., 2022). In addition to providing resources about chronic pain, CHYP also has a plethora of programs for parents of adolescents with pain to help parents support their child’s development of self-agency. This helps supplement treatments from academic pediatric pain centers.
Figure 2. CHYP Support for Parents and Caregivers
Pain clinics often have lengthy waitlists, leaving patients and their families with questions and without support for long time periods. CHYP bridges the gap for families waiting for an initial pain clinic appointment or between appointments by providing evidence-based pain education, self-help tools, creative arts, and support programs rooted in science, regardless of geography, minority status, or financial need. Through the use of a safe, heterogeneous online community with pain as the common denominator, CHYP can accomplish goals that are difficult to attain in a traditional medical setting. Each of CHYP’s programs has been ethically designed to meet the needs of patients and parents and promote equitable virtual delivery (Marbil & Birnie, 2024). Through CHYP, youth and parents can interact with others in similar situations, become connected to a community, and utilize tools like creativity that they may not have previously explored. A goal is for “CHYPers” entering a multidisciplinary pain program to feel more focused in their questions and comfortable with the explanations and treatment plans provided.
Conclusions
Tapping into the innate creativity of an individual with chronic pain and leveraging support networks early in life can lay the foundation for a brighter future where pain is not the central focus. CHYP emphasizes the importance of the biopsychosocial model to empower youth, focusing on services which channel creativity, increase self-efficacy, and leverage peer support to address multiple facets of pediatric pain, through programs carefully developed and supported by scientific research.
| Acknowledgments: The authors thank Noam Nutkiewicz Rose for his contribution to the literature review and a special thanks to all CHYP participants. |
Megan Sweeney, MPH
Creative Healing for Youth in Pain;
Loma Linda University School of Behavioral Health
Email: meg@mychyp.org
Ashley Matejka, DHA, MBA
Creative Healing for Youth in Pain
Kimberly Poston Miller, MBA
Creative Healing for Youth in Pain
Lonnie Zeltzer, MD
Creative Healing for Youth in Pain
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