Improving the Patient Experience With Migraine Camp, a One‐Day Group Intervention for Adolescents With Chronic Headache and Their Parents

Abstract

Though chronic migraine is actually common in adolescents, living with constant headache can be isolating for both patients and their families. As an outgrowth of clinical care, we developed the Miles for Migraine Youth Camp, a recurring 1‐day event for adolescents with chronic headache and their parents. Migraine Camp was developed to provide expanded headache education, teach coping strategies for living with chronic pain, and encourage development of a supportive community for adolescents living with chronic headache disorders and their families. The creation and curriculum of the Camps at the University of California San Francisco and Children's Hospital of Philadelphia are described in this manuscript, along with patient and caregiver feedback. Overall, feedback was positive. Teens reported feeling less isolated and more prepared to cope with headaches using new strategies. Both patients and caregivers consistently described benefit from connecting with others who experience similar challenges. The Migraine Camp teams at both institutions found it feasible to conduct the Camps 1‐2 times per year using existing resources, but noted that to scale it to a more regular event additional administrative and/or volunteer support would be needed. In summary, the experience has been positive for patients, caregivers, and staff, and we hope that this manuscript can serve as a “how to” model for similar events at other institutions.

Collaborating with a Youth Council to Improve Chronic Pain Resources

“… 41 , 42 Participants in our study expressed feeling understood, validated, and being able to build rapport over the course of two half-day sessions. These findings align with those of Hall and colleagues, 43 who reported on a 1-day migraine camp for parents and teens affected by chronic migraine. 43 Social interaction was highly valued within these camps, with parents and teens both noting that the most important aspect was realizing that “they are not alone” in their experiences.…”

“…These findings align with those of Hall and colleagues, 43 who reported on a 1-day migraine camp for parents and teens affected by chronic migraine. 43 Social interaction was highly valued within these camps, with parents and teens both noting that the most important aspect was realizing that “they are not alone” in their experiences. 43 However, it must be noted that a reflective approach must be used to promote the development of trust and safety in the group to obtain this result.…”

“… 43 Social interaction was highly valued within these camps, with parents and teens both noting that the most important aspect was realizing that “they are not alone” in their experiences. 43 However, it must be noted that a reflective approach must be used to promote the development of trust and safety in the group to obtain this result. In this project, the youth spoke highly of their experience in the youth council and affirmed feeling safe and supported.…”

“… 45 The empirical perspective speaks to how youth involvement may improve the design, content, and effectiveness of programs accessed by young people and which programs or areas may benefit most from including the youth voice. 43 In other words, youth have a right to participate in this work. Involvement that avoids tokenism and is a positive personal experience can result in substantive and instrumental outcomes 24 of better and more legitimate resources.…”

Poor social support and loneliness in chronic headache: Prevalence and effect modifiers

“…An example is the promising experience of youth camps for adolescents with chronic headache (72). Other examples are workplace accommodations to increase productivity in workers with migraine (73). Therapy delivered to groups of people with headache (focused on education, non-pharmacological treatment, psychotherapy, and self-management) show promise and may be more effective than individual delivery (74–77).…”