Supporting youth who have chronic pain and their caregivers through creative healing for youth in pain (CHYP)

1. The complexity of chronic pain

Pediatric chronic pain is a global health priority that impacts one in five children and adolescents worldwide and places a significant burden on children, their families, and society. Chronic pain can affect a child’s physical, psychosocial, and cognitive function. Parents of children with chronic pain have reported that their quality of life is also impacted by their child’s chronic pain. Furthermore, chronic pain has been shown to aggregate in families. Creative outlets, social support, and pain education have emerged as important chronic pain management approaches among both children and adults. We review the evidence for these modalities as adjuncts to clinical care and describe an online self-help program for both children with chronic pain and their caregivers called Creative Healing for Youth in Pain.

Recurrent and persistent pain are unfortunately common experiences for both children and adults. Vulnerability to chronic pain is complex and results from biological, psychological, and social interactions [1]. A unique consideration in management of pediatric chronic pain is the bidirectional influence of pain experiences of youth and parental/family factors. Developmental processes of children, parent emotions, family behaviors, and parent health all play roles in shaping the pediatric pain experience, as assessment of pain in children is linked to their unique level of development. Children of the same age vary widely in their perception and tolerance of pain. Furthermore, the paucity of integrated multidisciplinary, pediatric pain clinics leads to diagnostic uncertainty, multiple points of siloed medical evaluations focused on an individual’s specific organ systems instead of collective, family-based approaches to managing pediatric chronic pain. One of the major differences in practice in treating adult versus pediatric chronic pain is that there is one patient primarily involved in adult pain management, while for children, there are siblings, parents, school, and social factors that all play significant roles and need attention. Pain research in children and adolescents is lacking compared to the attention and resources devoted to adult investigations.

2. The burden of pediatric pain

Chronic pain, which is defined as persistent or recurring pain lasting longer than 3 months, is a common, underdiagnosed, and undertreated problem among pediatric populations. Due to its significant impact on children, their families, society, and the economy, chronic pain has been declared a global health priority [2]. Chronic pain in childhood is associated with significant functional impairments that often persist into adulthood [3]. Pediatric chronic pain adds stress to the lives of both patients with chronic pain and to their parents and caregivers. Prior research on family-level influences has demonstrated that families of children with chronic pain have poorer family functioning including less cohesion and more conflict compared to families of healthy children [4]. Parents of children with chronic pain face struggles in many aspects of life including emotions, work, and interpersonal relationships [5]. In particular, mothers of children with chronic pain have demonstrated higher rates of anxiety, depression, and pain disorders compared to mothers of controls [6]. On the other hand, parental and child cognitive behavioral interventions have been shown to decrease a child’s pain and increase parental coping abilities while decreasing parental catastrophizing [7].

3. Pain among parents and caregivers of children with chronic pain

While children with chronic pain present unique challenges for parents and caregivers, parental mental and physical conditions also have implications for the health outcomes of their children. Parent emotions, behaviors, and health impact children’s pain experiences, where overly protective parent behaviors, increased distress, and history of chronic pain are important parent-level influences [4]. The offspring of parents with chronic pain are at increased risk of developing their own chronic pain and are more likely to experience poor mental and physical health outcomes including greater externalizing and internalizing problems, poorer social competence, and worse family outcomes compared to offspring of parents without chronic pain [8]. Parents with versus without chronic pain report worse psychosocial functioning including decreased mental health and parenting difficulties, which are associated with worse pain experiences for their children [9]. Furthermore, parental catastrophizing about a child’s pain mediates worse pain outcomes among children with chronic pain, increasing the importance of education and behavioral treatments that target both children with chronic pain and their parents or caregivers [10].

4. Managing pain through creativity and social support

Creativity, social engagement, and education can be fostered and encouraged in different ways among both parents and children who have chronic pain. While research has suggested that meditation, yoga, hypnosis, and physical therapy can help improve function and well-being in teens with chronic pain, increasing data has suggested the value of creative arts such as music and creative writing [11]. Group-based interventions focused on creativity can reduce pain and isolation [10]. Artistic disciplines, such as painting, acting, or music, involve creative processes that inform a variety of subject areas. However, creativity generally refers to out-of-the-box thinking, new ways of approaching situations, and problem-solving capabilities, including the ability to consider multiple perspectives and to utilize flexibility of thought. Creative activities aid chronic pain management and reduce mental distress by strengthening the mind-body connection [11]. Individuals have leveraged different art forms to express emotions throughout history. Adolescents often turn to music, painting, dancing and other forms of artistic expression to add a visual or auditory explanation to emotions [12]. Another form of creativity, storytelling, can be harnessed as a tool to aid in the ability to listen, understand, and improve clinical encounters for both children with chronic pain and their parents or caregivers [13]. Creative writing about traumatic, stressful, or emotional events has been associated with improvements in physical and psychological health including reductions in depression and anxiety [14]. Narrative medicine or encouraging parents’ and youth’s storytelling about the chronic pain experience has been shown to improve clinical encounters and create more youth-centered, empowering clinical visits [13].

Group art therapy has been shown to be helpful in supporting parents of children with chronic pain during pediatric intensive interdisciplinary pain rehabilitation, as art reinforces parent strengths and promotes healthy coping [15]. Parents of children with chronic pain who participated in a four module, parent-only group art therapy program reported that they enjoyed the group, agreed that they would try art therapy again, and found it to be a helpful, supportive, and validating experience [16].

5. Creative healing for youth in pain

Creative Healing for Youth in Pain (CHYP) is a nonprofit that empowers, educates, and supports youth worldwide between ages 13 to 24 years who experience chronic pain in addition to supporting their families. CHYP provides free services to these populations, relying completely on donations, grants and awards to develop and administer non-clinical interventions informed by rigorous pain neuroscience. CHYP’s goal is to help individuals rethink chronic pain, altering the brain’s pain circuits through creative healing experiences, education, and peer support. By leveraging the advantage of a virtual-based intervention, CHYP serves diverse families nationally and internationally by removing barriers to healthcare like cost, location, socioeconomic status, and transportation. CHYP offers in-the-moment strategies for managing a child’s pain for both children and their parents/caregivers, along with expert advice for fostering long-term function and developmental growth.

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. Although anecdotal, testimonial reports suggest that CHYP is beneficial to patients with chronic pain and their families, it is currently being empirically evaluated through a formal pilot study.

6. CHYP supports parent-child interactions

CHYP also utilizes the power of group-based programming to reduce isolation among parents and their children. Youth and adolescents with chronic pain often become isolated via school absenteeism and reduced participation in social and physical activities. These factors further isolate their parents from engaging with other parents in similar situations. Encouraging social support among teens and among parents experiencing similar issues has been shown to provide positive experiences, reducing feelings of isolation and self-blame [17]. Consistent with the biopsychosocial model, CHYP provides monthly Zoom meetings for youth, ages 13–24, to develop relationships with peers in similar circumstances, and a live, virtual creative arts summer camp to address these feelings of isolation common among youth with chronic pain. Similarly, CHYP provides peer support to parents and caregivers through monthly Zoom meetings in addition to a psychologist- led “Creating Bonds” series. This evidence-based program is presented in a structured live, online format over an 8-week period to foster social interaction and parenting practices for those experiencing similar challenges. Participating in expressive and creative offerings through CHYP allows youth with pain to feel enhanced control over their minds and bodies via a non-clinical and noninvasive intervention. Self-expression by parents and youth encourages a safe and empowering context for children to face their pain and pain-related distress, factors that can result in both parties experiencing less distress.

Addressing challenges faced by parents as their children transition to young adulthood is challenging for most parents, but especially for those whose young adult has chronic pain. CHYP provides a plethora of programs for parents of adolescents with pain to help parents support their child’s development of self-agency. This online support and education provide supplemental resources for the academic pediatric pain centers throughout North America. Pediatric pain clinics often have lengthy waitlists, leaving patients and caregivers with questions and without support for long time periods. Through CHYP, youth and their parents and caregivers meet others in similar situations, become connected to a community, and utilize tools like creativity that they may not have previously explored. CHYP strives to make children and their parents more comfortable with pain-related explanations and treatment plans upon entering multidisciplinary pain programs.

7. CHYP educates families

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 use of a safe, monitored, and 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. CHYP also provides evidence-based education about pain and associated contributors in a way that makes sense to those affected by chronic pain through virtual meetings and webinars for parents with clinical experts. Additionally, weekly blogs and vlogs provide parents with further information and education.

CHYP programs seek to ease anxiety for children and their parents or caregivers surrounding diagnostic uncertainty that commonly drives families toward frequent visits to numerous specialty care providers. These visits not only increase healthcare spending, but also exacerbate symptoms of depression, anxiety, helplessness, and school absenteeism [18]. Through patient and caregiver education, CHYP seeks to clarify understanding of a variety of pain disorders to reduce uncertainty for families [19]. Through the enhancement of teens’ self-agency, CHYP can reduce uncertainty and minimize parents’ “diagnosis-seeking” behaviors [19].

8. Conclusion

Chronic pain among youth and adults can impact many facets of an individual’s life and family. Artistic interventions that promote creativity can be helpful for reducing pain, anxiety, stress, and fear associated with chronic pain treatment [16,20]. Online, evidence-based programs such as CHYP emphasize the importance of the biopsychosocial model to empower and educate youth, focusing on services that channel creativity, increase self-efficacy, and leverage peer support to address multiple facets of pediatric pain. CHYP serves as an adjunct to clinician support to aid families in evidence-based ways. While some organizations similar to CHYP exist, CHYP’s additional unique focus on creative arts addresses both important aspects of pediatric pain psychology and the dynamics of the child-family interactions. Through programs based in science and input from a wide number of known pediatric pain experts across disciplines, CHYP’s goal is to provide added value and support to traditional clinical pain care. Future trials need to systematically evaluate the effect of CHYP as an adjunct to clinical pain care on multiple outcomes among children with pain and their family members.

While results from small feasibility and preliminary pilot studies on creative interventions for pediatric chronic pain are promising, additional robust qualitative and quantitative research studies involving larger, more diverse samples and well-controlled clinical trials are needed to rigorously evaluate pain-related outcomes. Ongoing studies should also explore the cost-effectiveness of creative interventions for chronic pain. Finally, more research is needed to identify the specific creative modalities that are the most effective and for whom to complement pediatric chronic pain services.

Funding Statement

This paper was not funded.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Author contributions

Megan Sweeney: Conceptualization, Investigation, Methodology, Writing – Original Draft, Writing – Review & Editing, Project administration. Kimberly Miller: Writing – Original Draft, Writing – Review & Editing, Supervision. Lonnie Zeltzer: Supervision, Writing – Original Draft, Writing – Review & Editing. Lonnie Zeltzer is a member of the Pain Management Editorial Board. They were not involved in any editorial decisions related to the publication of this article, and author details were not made available to the article’s peer reviewers as per the journal’s double-anonymized peer review policy.