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Using Multi-Informant Qualitative Data to Inform Adaptations to Mindfulness-Based Interventions for Adolescents With Chronic Migraine.

Clementi MA et al. · ncbi_pmc
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Published in final edited form as: Clin J Pain. 2026 Apr 1;42(4):e1354. doi: 10.1097/AJP.0000000000001354 Search in PMC Search in PubMed View in NLM Catalog Add to search Using Multi-Informant Qualitative Data to Inform Adaptations to Mindfulness-Based Interventions for Adolescents With Chronic Migraine Michelle A Clementi Michelle A Clementi , PhD * Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora; † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; Find articles by Michelle A Clementi *, † , Michelle Harmon Michelle Harmon , BS * Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora; † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; Find articles by Michelle Harmon *, † , Emily F Law Emily F Law , PhD § Departments of Pediatrics and Psychiatry & Behavioral Sciences, University of Kansas Medical Center, Kansas City, KS. Find articles by Emily F Law § , Sarah D E Perzow Sarah D E Perzow , PhD † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; ‡ Department of Human Development and Family Studies, College of Health and Human Services, Colorado State University, Fort Collins, CO; Find articles by Sarah D E Perzow †, ‡ , Lauren B Shomaker Lauren B Shomaker , PhD † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; ‡ Department of Human Development and Family Studies, College of Health and Human Services, Colorado State University, Fort Collins, CO; Find articles by Lauren B Shomaker †, ‡ , Talia Thompson Talia Thompson , PhD † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; Find articles by Talia Thompson † Author information Article notes Copyright and License information * Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora; † Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora; ‡ Department of Human Development and Family Studies, College of Health and Human Services, Colorado State University, Fort Collins, CO; § Departments of Pediatrics and Psychiatry & Behavioral Sciences, University of Kansas Medical Center, Kansas City, KS. ✉ Reprints: Michelle A. Clementi, PhD, 13123 East 16th Avenue, Box B155, Aurora, CO 80045 ( [email protected] ). Collection date 2026 Apr 1. PMC Copyright notice PMCID: PMC13052388  NIHMSID: NIHMS2155687  PMID: 41441731 The publisher's version of this article is available at Clin J Pain Abstract Objectives: Adolescents with chronic migraine face increased risk for comorbid anxiety and depression that, can hinder migraine self-management and coping. Mindfulness-based interventions may reduce anxiety/depression to improve migraine outcomes, yet require tailoring to increase acceptability and engagement among this distinct population. The current study used qualitative methods to explore multi-informant perspectives on the illness experience and unique intervention content/delivery needs, with the goal of informing adaptations to mindfulness-based interventions for adolescents with chronic migraine. Materials and Methods: Fifteen interest holders, representing adolescents with chronic migraine, their parents, and health care providers, completed semi-structured interviews assessing experiences with chronic migraine, the role of stress and emotions, attitudes toward mindfulness, and perspectives on a telehealth group mindfulness-based program. Interviews were transcribed and coded using a team-based thematic approach. Results: Data revealed 4 major themes informing adaptations to mindfulness-based interventions for adolescents with chronic migraine: supporting engagement in mindfulness in the context of migraine pain, incorporating lived experience in intervention content, facilitating peer connections, and providing opportunities for parental involvement. Qualitative results were integrated with content expert input to develop specific adaptation recommendations for mindfulness-based interventions for adolescents with chronic migraine. Discussion: Acknowledging and addressing the challenges of practicing mindfulness in the context of pain and targeting the isolating experience of chronic migraine by offering peer connection via group intervention delivery may offer unique ways to tailor mindfulness-based interventions for adolescents with chronic migraine. Adaptations may improve intervention fit, acceptability, and retention and should be tested in future clinical trials. Keywords: mindfulness, migraine, adolescent, qualitative, intervention adaptation Chronic migraine is a highly disabling medical condition that impacts 1% to 2% of adolescents in the United States and is associated with $1 billion in direct medical costs for adults. 1 , 2 Chronic migraine is defined as at least 15 headache days/month (of which at least 8 have migraine features) with a duration of at least 3 months. 3 Up to 69% of adolescents referred to specialty headache centers are diagnosed with chronic migraine. 2 As migraine increases in frequency, adolescents commonly experience academic challenges, social isolation, and family stress. 4 Individuals with chronic migraine are approximately twice as likely to have anxiety and/or depression compared with those with episodic migraine. 5 Anxiety/depressive symptoms have been identified in cross-sectional and longitudinal studies as predictors of greater headache severity, greater headache-related disability, and higher health care costs in adolescents with migraine. 6 Recent research in adolescents and adults with migraine has identified greater anxiety/depressive symptoms at pretreatment as a risk factor for poor response to behavioral and pharmacologic migraine treatments. 7 – 9 Unfortunately, existing evidence-based behavioral treatments for adolescent migraine do not directly target anxiety/depressive symptoms, and existing meta-analyses demonstrate that while symptoms of headache improve, anxiety/depressive symptoms do not. 10 Experiencing migraine in adolescence is known to increase risk for persistent migraine, psychiatric disorders, and other chronic pain disorders in adulthood. 11 – 13 Thus, approaches to optimize treatment of migraine during adolescence by directly targeting anxiety/depression symptoms could disrupt potentially lifelong trajectories of pain, disability, and economic burden. Mindfulness-based interventions (MBIs) focus on fostering nonjudgmental awareness of thoughts, emotions, and sensations to support healthier coping with emotions and pain. 14 MBIs may be a distinctly suited modality to support adolescents with chronic migraine, given MBIs’ efficacy for decreasing anxiety/depression in adolescents without pain. 15 , 16 Yet nearly all studies of MBIs for migraine have been in adults. 17 Randomized trials of MBIs in adults with migraine show improvements in headache-related disability alongside improvements in anxiety and depression. 18 – 20 In adolescents, 2 small nonrandomized studies of MBIs for migraine/headache, 21 , 22 along with several small pilot trials in chronic pain more broadly, 23 – 28 show promise for improving disability with in-person delivery. However, the recruitment and retention of adolescents with migraine/headache were challenging. 21 , 22 Patient-informed tailoring of MBIs for the unique experiences central to living with chronic migraine as a young person has not been done, despite its importance. Even if an efficacious intervention exists for other populations, transporting the model to a new population without assessing for adaptation needs from interest holders often results in lower engagement and poorer treatment response. 29 A foundational aspect of MBIs that may present a particular challenge for this population is purposeful and nonjudgmental observation of one’s thoughts, feelings, and sensations in the present moment without attempts to change them. 30 Mindfulness aims not to eliminate pain but to change the perception of pain by cultivating an accepting and nonjudgmental attitude, and improving emotional/cognitive coping with anticipation and perception of migraine attacks. 14 , 31 Thus, mindfulness aligns with exposure/approach behaviors, rather than avoidance/escape behaviors as described in the Trigger Avoidance Model of Headaches 32 and Fear-Avoidance Model of chronic pain. 33 Both of these models suggest that avoidance and escape behavior (to headache/migraine triggers, or pain itself) increase sensitivity to triggers or negative appraisal of pain, respectively, which leads to fear of potential triggers/pain and maladaptive coping behaviors such as avoidance and/or hypervigilance. 32 , 33 Indeed, adolescents with chronic pain report discomfort and nervousness about mindfulness practices as a core reason for dropout and a barrier to nontailored MBI participation. 23 , 24 This disconnect must be directly addressed through in-depth knowledge of adolescents’ migraine experience, including the role of avoidance/escape behavior, which can then be applied to tailoring content that ties mindfulness psychoeducation, group-based activities, and home practices to align with adolescent patients’ lived experiences of migraine and support approach behaviors (ie, mindfulness). In other words, adaptations to acknowledge and accommodate the challenge of experiencing migraine pain while engaging in core tenants of mindfulness (ie, purposeful and nonjudgmental observation of all sensations, including unpleasant ones like pain) requires thoughtful tailoring directly informed by patients and providers alike. Our overarching goal is to adapt an accessible, scalable MBI to address the needs and preferences of adolescents with chronic migraine to optimize engagement, acceptability, and outcomes. This work is guided by the ORBIT model of behavioral intervention development, which encourages qualitative research methods to gather input from intended intervention recipients before pilot/feasibility and efficacy testing. 34 Drawing on prior, rigorous qualitative intervention adaptation approaches, 29 the current exploratory qualitative investigation is a critical initial step aimed to understand the lived experiences and unique MBI content/delivery needs of adolescents with chronic migraine through the perspective of primary interest holders, including adolescents with chronic migraine, their parents, and their health care providers. MATERIALS AND METHODS The overall study was grounded in the biopsychosocial model of pediatric pain, which emphasizes the role of adolescent development in biological (eg, pubertal development), psychological (eg, mood, anxiety, coping), and social (eg, peer relationships, family factors) factors that contribute to risk and resilience in pain experiences/management. 35 Our work was also influenced by an overarching study philosophy of pragmatism, 36 focused on solving real-world clinical problems. We conducted semi-structured interviews with primary interest holders in spring/summer 2023 to understand in-depth the lived experiences of adolescents with chronic migraine to inform adaptations for a telehealth group MBI for this target population. Interviews were conducted one-on-one via Zoom videoconferencing in a private setting from participants’ homes/workplace. 37 The study was approved by the Colorado Multiple Institutional Review Board (COMIRB) and all procedures complied with the COMIRB ethical guidelines. Participants and Recruitment Adolescents with chronic migraine were the focus of this study due to the high prevalence of co-occurring anxiety and depressive disorders. 5 , 6 Eligible participants included adolescents 13 to 18 years old with a diagnosis of chronic migraine, parents/guardians of an adolescent with chronic migraine, and providers with at least 25% of their clinical practice involving health care for adolescents with chronic migraine. Adolescent patients and their parents were recruited through the Children’s Hospital Colorado Child Neurology Clinic. Using the electronic medical record system, a research team member conducted a preliminary screening to identify potentially eligible adolescents based on age, headache diagnosis, and the absence of exclusionary comorbidities that could impair their ability to provide informed consent or assent (eg, significant cognitive impairment). Patients/families meeting these criteria received an email containing a brief description of the study and a link to an interest form. In addition to electronic outreach, Neurology Clinic providers, including neurologists and the principal investigator (a licensed psychologist), shared study details and the interest form link with patients during clinical visits. Health care providers were recruited separately via the American Headache Society professional listserv. An email invitation outlining the study and including the interest form link was distributed to members of the Behavioral and Pediatric-Adolescent Headache Special Interest Groups. A research team member followed up with families and health care providers who completed the interest form to confirm eligibility and schedule interviews. A stratified purposeful sampling approach was employed to select participants who could provide rich, relevant insights into the phenomenon of study and who could best answer the research questions. 38 This strategy ensured representation across key interest holder groups and clinical roles. Among health care providers, we recruited individuals from diverse professional backgrounds involved in migraine care, including neurologists, nurse practitioners, and psychologists. A total of 15 interest holders (5 adolescent/parent dyads, 5 health care providers) were enrolled. All participants provided informed consent/assent and received a gift card for their participation. Data Collection A team of child clinical and pediatric psychologists with varied domain expertise (adolescent migraine, mental health, MBIs, qualitative research) developed semi-structured interview guides for each interest holder group. Guides included open-ended questions around the lived experiences of chronic migraine in adolescents and feedback for MBI adaptation and delivery ( Supplemental Content 1 – 3 , Supplemental Digital Content 1 , http://links.lww.com/CJP/B283 , Supplemental Digital Content 2 , http://links.lww.com/CJP/B284 , Supplemental Digital Content 3 , http://links.lww.com/CJP/B285 ). Example topics included experiences living with chronic migraine, the role of stress and emotions in migraine, attitudes toward mindfulness, and perspectives on a telehealth group MBI program (to be adapted from Learning to BREATHE , an empirically supported mindfulness curriculum for adolescents 39 ). Providers were also asked about strategies for increasing patient interest in MBI participation. The guide was piloted with 2 parents and a headache psychologist, then adjusted for clarity. Interviews were conducted by the lead investigator (M.A.C.), a headache psychologist. This investigator had a prior clinical or professional relationship with participants, with the degree of prior interaction ranging from brief encounters (eg, a one-time clinical consultation) to more sustained engagements (eg, collaboration on professional initiatives). A research team member was also present to record field notes (M.H.). Interviews ranged from 20 to 60 minutes. Transcripts were audio-recorded and transcribed verbatim by a research team member (M.H.). Participants also completed a questionnaire assessing demographics and medical or professional history. Qualitative Analytic Plan and Adaptation Methods Deidentified transcripts were imported into ATLAS.ti Version 22 software for coding and management. We used an integrated team-based approach to thematic analysis, 40 originally informed by Braun et al’s 41 seminal work in reflexive thematic analysis and adapted for multidisciplinary health services research teams. Thematic analysis provided a flexible yet rigorous methodology for interpreting the data through the lens of the biopsychosocial model of pediatric pain while maintaining our focus on identifying pragmatic and actionable themes related to intervention adaptation. We used a hybrid approach to coding, with both deductive and inductive codes. A priori codes were based on the implementation science Framework for Reporting Adaptations and Modifications to Evidence-based interventions (FRAME) 42 and open codes were derived directly from the data. 43 A coding team (M.A.C., M.H., and T.T.) met several times for open coding meetings to establish a preliminary codebook, defining each code and jointly coding 20% of transcripts until the coding structure was well established. The remaining transcripts were coded by at least 2 individuals, with frequent team meetings to resolve discrepancies and to update the codebook and refine definitions as needed. Next, the coding team independently reviewed code reports and wrote analytic memos to document emergent themes, triangulating data within and across interest holder groups. Individual team members’ preliminary theme lists were synthesized through group discussion, refined for clarity, and linked directly to participant quotes to establish trustworthy results grounded in participant experience. These qualitative summaries and themes were then reviewed by the larger research team of clinical and pediatric psychologists with expertise in MBIs and adolescent migraine to identify potential adaptations for MBIs for adolescents with chronic migraine. Additional input from content experts in group interventions for adolescents with chronic pain, physical therapy for pediatric headache, and MBIs for adults with migraine was also incorporated into suggested intervention modifications. The final overarching themes presented in this manuscript reflect key factors related to adapting MBIs for adolescents with chronic migraine. RESULTS Participants included 5 adolescents diagnosed with chronic migraine, 5 parents, and 5 health care providers ( Table 1 ). Adolescents were 14 to 17 years old and experienced headaches for 3 to 10 years ( M = 5.10, SD = 3.01). M headache frequency was 18 headache days/month (SD = 10.94), and M severity was 6.60 (SD = 2.07) on a scale of 0 (no pain) to 10 (worse possible pain). All adolescents were prescribed preventive and acute medications for migraine. All parents identified as mothers. Three parents (60%) reported experienced migraine themselves. Providers had worked 3 to 12 years ( M = 7.40, SD = 3.85) with adolescents with migraine and 60% to 100% of their current work was focused on pediatric headache. TABLE 1. Participant Sociodemographic Data Adolescents (n = 5), N (%) or M (SD) Parents (n = 5), N (%) or M (SD) Providers (n = 5), N (%) or M (SD) Age 15.60 (1.34) 49.20 (2.95) 39.80 (7.22) Sex Female 3 (60%) 5 (100%) 4 (80%) Male 2 (40%) — 1 (20%) Gender Female 3 (60%) 5 (100%) 4 (80%) Male — — 1 (20%) Other 2 (40%) — — Race White 4 (80%) 4 (80%) 5 (100%) More than one race 1 (20%) — — American Indian/Alaska Native — 1 (20%) — Ethnicity Not Hispanic/Latino 4 (80%) 4 (80%) 5 (100%) Hispanic/Latino 1 (20%) 1 (20%) — Distance from headache center < 20 miles 2 (40%) — — 20–100 miles 2 (40%) — — > 100 miles 1 (20%) — — Household income < $25,000 — 1 (20%) — $50,000-$99,999 — 1 (20%) — $100,000-$199,999 — 3 (60%) — Parent highest education level High school graduate — 2 (40%) — Undergraduate degree — 3 (60%) — Provider professional role Pain psychologist — — 2 (40%) Neurologist — — 1 (20%) Nurse practitioner — — 2 (40%) Open in a new tab Thematic analysis across interest holder groups generated 4 major themes. Data coalesced around the broad concept that chronic migraine is a serious health condition and merits thoughtful adaptations to ensure MBIs are acceptable and relevant for this patient population. See Figure 1 depicting relationships among themes in the context of the biopsychosocial model of pediatric pain. See Table 2 for illustrative quotes to support data interpretation. FIGURE 1. Open in a new tab Qualitative themes within the context of the biopsychosocial model of pediatric pain. MBIs indicates mindfulness-based interventions. TABLE 2. Qualitative Themes and Illustrative Quotes Theme 1: Supporting engagement in MBIs in the context of migraine pain I tried [a body scan] a couple of nights ago to fall asleep, and it was really hard because I had a headache. So, I kinda get stuck on my head hurts, my head hurts. So, it’s kind of hard, and I’m figuring out that I can probably try that again when I’m not having [a headache], and then kind of see if that works better for me. (17-year-old adolescent) [Regarding mindfulness,] you can’t just do it once and expect it to magically get rid of your headaches right away, because that’s not how this intervention works. (Pediatric headache specialist) Honestly, it’s kind of just ignoring [migraine] until it happens. And then once it does, figure it out, okay, is that enough for me to have to sit down and put my life on pause, or can I push through it? And for me, I’m someone who kinda will push through a lot of the headache stuff just because I feel bad for missing out on things. If I take too many breaks, then I’m letting it get to me. So that’s kind of how I deal with it. It’s not the best, but I will ignore it until it happens, and then just try to do the cautionary measures. (17-year-old adolescent) My patients sometimes have active pain and feel like they can’t participate [in psychology sessions]. We’d have to end early and it would be really hard. It was just too much and they couldn’t do it. (Pediatric headache specialist) Theme 2: Incorporating lived experience into MBI content Headaches have this unpredictable nature to them and that can be really frustrating… Are you gonna have to miss school? Are you gonna not be able to go to graduation or the prom because you’re gonna get a headache? Can you actually stay up as late as your friends if you want to, or are you going to get a headache the next day? (Pediatric headache specialist) I think school can definitely stress her out, with her workload and the challenges there with honors classes, and AP classes, and doing some community college concurrent credits. She’s smart, but I think there’s also that pressure of having to keep up with that and with missing school, right? So, it’s kind of this cycle that you get stuck in of ‘I have to complete this, I have this important test or this assignment, but I feel not well, so I’m missing [school], I’m trying to make up.’ (Mother of 17-year-old with chronic migraine) When I have a migraine, it makes me feel stressed and worried that I’m not gonna be able to back to doing the things I like to do, and I worry it might continue on for a long time. And [the stress] stops me from doing the things that I should be doing to help get over the migraine. (15-year-old adolescent) Theme 3: Facilitating peer connection in MBIs Something about headaches makes it seem very isolating. Especially if you’re in like a friend group or family that doesn’t really deal with them that much. Like I know that people are out there that exist with headaches. But it’s still hard because it feels like I’m the only one who’s going through it. (17-year-old adolescent) I think that camaraderie and not just sympathy but empathy that people can share with each other can really be helpful in that sense of community. So, I really love the group aspect of [the proposed MBI]. (Pediatric headache specialist) I think [teen will] do best in groups with mixed genders and some age variants because I think that overall [teen] wants to see that [they’re] not alone. Like a lot of times whatever we have going on with us makes us feel isolated… Being able to learn from somebody who’s been through it a little bit longer, or maybe being able to help somebody that’s younger than you and feel like your input is valuable will be good for the brain. (Mother of 15-year-old with chronic migraine) Theme 4: Providing opportunities for parental engagement in MBIs Usually it’s a change in attitude first and then a change in behavior. So the attitude will come, or she just seems kind of grumpy or something, then the behavior changes and she’s really quiet, every answer is ‘I don’t care.’ And then there’s us encouraging her to like, take this medication, or ‘Do you want to try this?’ And she’s usually not very receptive to most of our ideas. (Mother of 15-year-old with chronic migraine) [Teenagers are] left up to their own devices to take the medicine or do whatever it is: eat well at school, drink more water, get sleep. And they’re not toddlers anymore where their parents are able to like, do it for them. So it’s just, I think, having a good balance of autonomy with the teen and trusting them that they’re gonna do it. Then, also having parents stepping in when they need to. (Pediatric headache specialist) As a family we stopped kinda doing activities. I look at our life now and we don’t have these families activities anymore because [my child] doesn’t feel good, so we don’t plan stuff. (Mother of 15-year-old with chronic migraine) Open in a new tab Theme 1: Supporting Engagement in MBIs in the Context of Migraine Pain While MBIs held appeal for most participants, many also expressed hesitation around practicing mindfulness while experiencing pain, which highlights the need to acknowledge and attend to adolescents’ tendencies toward behavioral avoidance of pain. Parents and providers noted that mindfulness during migraine episodes may be aversive and intensify pain, and 1 adolescent suggested body scan practices should avoid focusing on the head or current migraine. Several adolescents and parents spoke about a preference for intentional distraction during migraine episodes so they do not miss out on activities. One adolescent noted mindfulness felt unappealing, as she preferred “doing something” rather than being still. Most adolescents also reported they had little experience with mindfulness and were unsure how mindful present-moment attention/awareness might benefit migraine management. This highlighted a knowledge gap among adolescents in how approach behaviors may support living with chronic migraine. Providers offered suggestions to acknowledge/address behavioral avoidance of pain, such as normalizing that engaging in mindfulness might acutely increase pain awareness or feel overwhelming initially, because they are removing usual distractions. Providers offered suggestions for coping with enhanced pain awareness from mindfulness, such as taking breaks or using grounding techniques (eg, focus on the breath and/or a sound in the room). One provider suggested instructing adolescents to build mindfulness skills in lower pain situations rather than during acute migraine episodes. The combination of adolescent resistance to tasks without immediate benefits and desire for instant gratification was a common theme throughout the interviews that may warrant acknowledgement/adaptation in MBIs for this population. Adolescents acknowledged their own short-term thinking, which they described as an inclination to ignore migraine-related health needs and avoid self-care behaviors they knew could prevent/minimize future headaches, in favor of “pushing through” the day to avoid missing out on life. Both parents and providers also identified the lack of immediate pain relief as a potential barrier to engagement and/or retention for MBIs for adolescents with chronic migraine. Some parents spoke of their adolescent’s impatience as a potential hindrance to MBIs, as they perceived that adolescents may find exercises to be silly or a waste of time. Providers currently teaching mindfulness in their practice noted that mindfulness takes time to learn and benefits may not be immediately experienced by adolescents. While stress management was seen as a key benefit of MBIs, providers cautioned against framing stress as a migraine cause (even inadvertently), which can feel stigmatizing. To address potential stigma, providers recommended presenting MBIs as part of a holistic treatment approach for migraine management, providing youth with more autonomy over migraine care, and giving them useful coping tools they may apply as they choose. One provider also advised setting clear expectations about the degree to which adolescents can control headaches, targeting instead controllable factors like healthy lifestyle practices and stress/mood management. Finally, all interest holder groups described the significant impact that chronic migraine can have on functioning, including difficulties with school attendance and missing out on social and family activities. Thus, adolescents directly shared the potential difficulty of attending MBI sessions on severe migraine days and noted a preference for optional attendance. Consideration of accommodations to support MBI attendance may be key for this patient population. Theme 2: Incorporating Lived Experience With Migraine into MBI Content All interest holder groups provided rich descriptions of being an adolescent living with chronic migraine, providing examples that could be included in a MBI program to increase the relevancy of the program content. General challenges of being an adolescent were often described as complicating the experience of living with migraine. Adolescents and parents described stress related to school, peer conflict, chores, performance pressures, and busy schedules. These typical adolescent stressors were reported to interfere with self-care activities (eg, exercise, hydration, and sleep) that affect migraine management and/or prevention. In turn, frequent migraine often increases stress, given its impact on school functioning. All interest holders described the loud, busy school environment as especially challenging. Frequent visits to the nurse’s office and chronic absences contribute to falling behind on assignments and missing social connections. One adolescent described transitioning to homeschool because headaches made it impossible to attend school with regularity. All interest holder groups described the complex link between emotions and migraine, which could be acknowledged/explored in MBI sessions. Many participants explained that while stress/mood problems may not directly cause the onset of migraine, the two are often comorbid, whereby stress and mood problems can exacerbate pain and, in turn, living with chronic migraine can adversely impact mood. Many adolescents specifically described how migraine disrupts functioning (eg, canceling plans, poor school performance), which subsequently causes negative emotions, including sadness, frustration, and stress. Some also described that high stress and/or low mood may worsen migraine and impact how they care for themselves during a migraine (eg, less likely to rest when needed, may not take medication, tend to isolate and not ask for help). Parents described noting behavioral changes that may reflect mood concerns, including adolescents withdrawing from family activities and minimizing engagement to avoid triggering headaches. Regarding symptom management and treatment, some adolescents reported that nothing seemed to help their headaches. Others reported that medication side effects (eg, extreme fatigue, nausea) were so aversive that they dreaded or avoided taking medication. Providers explained that many of their patients had poor adherence or were tired of taking medications that provided insufficient relief or caused more problems than they solved. Together, this information can serve to inform examples and discussion prompts in MBIs tailored to the lived experience of adolescents with chronic migraine. Theme 3: Facilitating Peer Connection in MBIs All interest holder groups perceived that a major potential benefit of group MBIs would be opportunities to enhance adolescents’ sense of belonging by connecting with other youth with migraine. Adolescents described the experience of chronic migraine contributing to feelings of isolation due to missed social experiences, and they expressed a sense that others (teachers, peers, parents) did not understand their pain. Participants from all interest holder groups anticipated that peer support in a group setting would allow adolescents to share and learn coping strategies from one another. One adolescent emphasized the importance of everyone having time and space to share. Parents suggested that facilitators use structured prompts to encourage connection, including migraine-specific conversation probes, though severeal adolescents cautioned that talking directly about pain in a group could be potentially problematic. Adolescents denied concerns about age and/or gender differences within a group setting, emphasizing the value of shared experiences of migraine across all group members. Theme 4: Providing Opportunities for Parental Engagement in MBIs Overall, parents expressed the emotional toll of migraine and uncertainty about how to help their adolescent. Participants lamented the limited treatment options, and parents described their own feelings of hopelessness in the face of exhausting treatment options, as well as their limited control over their adolescent’s routines like medication, hydration, sleep, and exercise. One provider stressed balancing adolescent autonomy with parent oversight, as adolescents often struggle with consistent self-care. While all providers acknowledged the desire for adolescents to have independence and autonomy in their healthcare, parents also described the frustration of trying numerous treatment alternatives (eg, chiropractic care, supplements, and physical therapy) after adolescents expressed medication reticence. Together, this spoke to parents’ desire to support their adolescent in managing migraine. Incorporating Qualitative Results into Proposed MBI Adaptations See Table 3 for integration of qualitative results with content expert input into potential adaptations for MBIs for adolescents with chronic migraine. Recommended adaptations to MBIs for adolescents with chronic migraine include modifications to acknowledge and address potential behavioral avoidance of pain, address potential stigma/assumptions related to mindfulness and stress in the context of migraine, support attendance/engagement in the presence of pain, include examples and discussions relevant to adolescents with chronic migraine, promote peer connections with small group/paired activities, and provide support for parents (eg, communication/involvement in MBI). TABLE 3. Integrated Findings to Inform Adaptations to Mindfulness-based Interventions (MBIs) for Adolescents With Chronic Migraine Goals/impact Theme Source * Suggested adaptations to MBIs for adolescents with chronic migraine Increase acceptability Improve fit Increase retention Supporting engagement in MBIs in the context of migraine pain P, HP, CE Explicitly set expectations related to mindfulness for “living better” with migraine vs. pain reduction X X X A, CE Develop plan to support attendance in presence of headache (eg, dim screen, tell facilitator in advance) X X A, HP, CE Practice adjustments if feeling uncomfortable or overwhelmed by increased body/pain awareness X X HP, CE Explicitly state focus on stress management does not imply stress causes migraine (stigma) X X CE Planned session breaks with suggestions for headache coping strategies to use during break X X Incorporating lived experience into MBI content A, P, CE Relevant examples for adolescents with migraine (eg, scenarios in which migraine may increase stress in school/social settings) X A, P, CE Discussion of how concepts/activities relate to living with migraine or migraine-related stressors X Facilitating peer connection in MBIs A, P, HP, CE For telehealth delivery: use of virtual “break out rooms” for 1:1 connections and other interactive videochat features X X A, P, HP, CE Group connection activities with focus on shared interests vs. shared illness identity X X X Providing opportunities for parental engagement in MBIs P, HP Parallel mindfulness-based intervention for parents X P, HP Communication with parents: summaries of session content, relevant resources, and suggestions to support the adolescent in home practice X X X P, HP Initial orientation session to include parents to educate them about the intervention and collaboratively set expectations X Open in a new tab * Source (qualitative interviews, content expert meetings): A = adolescent, P = parent, HP = health care provider, CE = content expert. DISCUSSION MBIs may be an effective therapeutic modality for adolescents with chronic migraine but require patient-informed tailoring to optimize engagement and acceptability. To inform adaptations to a telehealth group MBI unique to this population, the current study explored the lived experiences and MBI content/delivery needs of adolescents with chronic migraine through the perspective of primary interest holders. Synthesis around qualitative feedback illustrated the need for adaptations to: (1) support engagement in MBIs in the context of migraine pain, (2) incorporate lived experience of adolescents with chronic migraine into adapted MBI content, (3) facilitate peer connection in MBIs given the inherent isolation of living with migraine, and (4) provide opportunities for parental engagement in MBIs given parents’ feelings of helplessness for managing their adolescent’s migraine condition along with acknowledgement of balancing autonomy versus parental involvement in the context of adolescent development. These insights underscore the necessity for thoughtful adaptation of MBIs for adolescents with chronic migraine to ensure intervention engagement, acceptability, and retention. One of our first recommendations includes psychoeducation explicitly stating expectations for MBIs as aiming to improve quality of life with chronic migraine, as opposed to immediate pain reduction. Improving quality of life is key, given the debilitating nature of migraine on multiple areas of adolescents’ lives, which can have a downstream impact on worsening mental and physical health. This need to set expectations of the treatment target is also informed by adolescents’ developmental tendency to focus on short-term outcomes (eg, reducing pain in the immediate short term, rather than considering long-term quality of life). By clarifying the intended goal upfront, it may be less likely that adolescents will disengage from MBI programs if they interpret it as “not working” (ie, not eliminating headaches). Additional psychoeducation for adolescents is recommended to combat potential stigma regarding the connection between stress and migraine, given that higher perceived stigma is a unique contributor to worse migraine outcomes and quality of life. 44 MBIs for adolescents with chronic migraine should include psychoeducation to normalize the potential bidirectional nature of migraine and stress and combat the erroneous stereotype that migraine is an emotional problem that individuals can control. Adaptations must also consider the role of behavioral avoidance of pain. It is important that the tendency to escape/avoid pain is validated for intervention acceptability and retention, while still remaining true to a core tenant of mindfulness practice of noticing all sensations, including unpleasant ones. A balance of this may be addressed by applying trauma-informed MBI adaptations whereby participants may oscillate their attention from a distressing sensation to one that is more neutral before returning back to the distressing sensation to gradually build tolerance. 39 , 45 , 46 For adolescents with chronic migraine, we recommend prompting them to identify a “safe space in the body” (eg, hands, feet on the floor) to which they can “take a pause” and redirect their attention during mindfulness practices if distressed by heightened awareness of headache. However, it is important that this approach does not reinforce behavioral avoidance, but rather explicitly acknowledges this tendency/challenge and encourages gradual exposure to distress tolerance. Attendance and engagement in MBIs in the context of chronic migraine may also be supported by planned brief breaks during sessions (ie, a pacing strategy), particularly if adolescents are experiencing acute symptoms during group. Providing suggestions of headache coping strategies to use during the break (eg, visual reminders displayed on screen during the break) is also recommended. In addition, knowing the enormous impact migraine has on attending school and social activities, we advise developing a person-centered plan around supporting program attendance in the presence of headache (potentially in individual orientation sessions before beginning group MBI). For example, reminding adolescents that they may dim the computer screen (for telehealth delivery) and notify the facilitator in advance if they are struggling with migraine symptoms. Qualitative feedback highlighted the enormous struggle of living with chronic migraine, and the unique ways this burden impacts adolescents, such as interference with school, extracurricular activities, and social connections. Thus, we recommend that MBIs include relevant examples for adolescents with migraine, as well as a discussion of how mindfulness concepts/activities relate to living with migraine or migraine-related stressors for adolescents. Migraine-related content may reduce adolescents’ feelings of isolation by hearing examples that connect to their lived experiences. Relatedly, given the isolating nature of chronic migraine and the importance of peer affiliation and a sense of belonging in this developmental stage, we recommend that group MBIs intentionally make space for connection among participants through opportunities for adolescents to talk one-on-one with each other, such as through the use of virtual breakout rooms on telehealth. Indeed, emerging research suggests the benefits of peer support programs and group interventions for adolescents with chronic illness, including chronic pain. 47 – 50 Incorporating group connection activities that focus on shared interests beyond only shared illness identity (eg, with specific conversation prompts) could also support adolescents in their desire to feel more “normal” and connected to others despite their chronic migraine. This also supports adolescents’ identity development by recognizing the balance of chronic migraine as part of one’s sense of self, without it engulfing all aspects of their identity—the latter of which is associated with increased anxiety and depression. 51 Finally, interviews highlighted parents’ own distress and uncertainty regarding how to support their adolescents. A parallel MBI program for parents may be a helpful adjunct to MBI for teens with chronic migraine, as parent-targeted interventions for parents of youth with chronic pain appear to have positive impacts on parent depressive symptoms and psychological flexibility, 52 , 53 as well as potential positive downstream effects for youth. 52 , 53 At a minimum, we recommend that parents receive regular communication related to their adolescent’s mindfulness program. Communication may include summaries of session content, relevant resources (including opportunities for parents to practice mindfulness themselves/with adolescent), and suggestions to support their adolescent in home practice of mindfulness skills. Inclusion of parents and adolescents together in an orientation session to provide education about MBIs (eg, outcomes focused on quality of life, role of stress) and attendance expectations, could also support a balance of parental involvement with adolescent autonomy, and empower parents to encourage their adolescent’s participation even if facing some resistance. In sum, rich qualitative data directly obtained from adolescents, parents, and health care providers helped illustrate the lived experiences of adolescents with chronic migraine and highlighted unique needs this population may have related to engaging in MBIs. Strengths of this study include the use of interest holder perspectives to inform intervention adaptation recommendations, along with rigorous qualitative methods. Most MBIs for adolescents with chronic pain have simply reduced the time commitment from adult intervention protocols or incorporated changes suggested by researchers or providers alone. 22 , 25 , 54 Adolescent-informed adaptations may be more likely to improve interest, engagement, and treatment response. 55 Limitations Despite the noted strengths, this study has limitations. A brief study timeframe and funding constraints prevented continued recruitment within each interest holder group until saturation was reached. 56 As a pragmatic qualitative investigation, our goal was not generalizability or an exhaustive catalog of all possible themes with multiple variations on meaning. Instead, we aimed to generate meaningful findings through a reflexive, interpretive process to support MBI adaptations, with an ultimate goal of transferability 57 ; findings applicable to similar clinical contexts that resonate with 57 interest holders’ lived experiences. Given our narrow, highly applied focus, theory-driven approach, and rich, illustrative conversations, we believe our sample provided sufficient “information power” for our purposes. 58 Second, it is important to note the potential demand characteristics placed on participants, given the interviewer’s prior clinical/professional relationships with the participating families and providers. On one hand, an established rapport could have encouraged comfort and openness, but on the other hand, social desirability bias (eg, presenting as overly positive and/or less likely to dissent given power dynamics) may have created complexities in interpreting findings. 59 To address this dual role, the interviewer emphasized confidentiality and practiced reflexivity, continually examining how their biases, assumptions, and position might affect the study, 60 though it is still a limitation of this study. In addition, although efforts were made to purposefully recruit diverse families (age, sex/gender, race/ethnicity, socioeconomic status, geographic location), some aspects were more varied than others. Furthermore, all participants were English-speaking. We will strive to include heterogenous participants across these categories in our planned future MBI studies. It will be particularly important to consider the need for cultural adaptations for MBIs, as conceptualizations and/or expressions of stress, pain, and negative emotions can differ across cultures, and the fit of MBIs within cultural values and experiences must be considered to enhance engagement, retention, and effectiveness. 61 For example, cultural adaptations for MBIs in adults have included grounding the understanding and practice of mindfulness in a population’s distinct culture by incorporating culturally relevant quotations, metaphors, readings, and relevant lived experiences (eg, racial discrimination, historical trauma). 61 Finally, the focus only on adolescents with chronic migraine may limit the relevance of adaptations to those with episodic migraine and other high-impact headache conditions (eg, post-traumatic headache, new daily persistent headache). Future work will explore adaptations to meet the treatment needs for these other subpopulations. 60 In sum, this study provides insight into the lived experiences of adolescents with chronic migraine, as well as their unique content and delivery needs for MBIs. The results from this study directly informed recommendations for adaptations to MBIs for adolescents with chronic migraine. Pilot testing of an adapted group telehealth MBI for this population is currently underway to assess feasibility and acceptability, and further refine the intervention based on participant feedback. Supplementary Material Suppl_Teen Interview NIHMS2155687-supplement-Suppl_Teen_Interview.docx (29.3KB, docx) Suppl_Provider Interview NIHMS2155687-supplement-Suppl_Provider_Interview.docx (21.2KB, docx) Suppl_Parent Interview NIHMS2155687-supplement-Suppl_Parent_Interview.docx (26.9KB, docx) Supplemental Digital Content is available for this article. Direct URL citations are provided in the HTML and PDF versions of this article on the journal’s website, www.clinicalpain.com . ACKNOWLEDGMENTS The authors are grateful to the participants who volunteered for this study and provided unique insights through qualitative interviews. This publication or project was made possible by Grant Number K23AT013838 from the National Center for Complementary and Integrative Health (NCCIH) and National Institute of Neurological Disorders and Stroke (NINDS), and by the NIH HEAL Initiative ( https://heal.nih.gov/ ). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCCIH, NINDS, and the National Institutes of Health. This work was also supported by the Colorado Child Health Research Institute: Research and Innovation Scholar Award (PI: M.A.C.) and the NIH/NCATS Colorado CTSA Grant Number UL1 TR002535 Aurora, CO. Footnotes The authors declare no conflict of interest. REFERENCES 1. 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