Longitudinal Narrative Analysis of Parent Experiences During Graded Exposure Treatment for Children With Chronic Pain.

Descriptive and paired t -test statistics for first, middle, and last sessions for all coded measures are presented in Table 2 . The majority of parents (67%) had an increase in frequency of positive affect between the first and last session, with only one parent showing a decrease in positive affect ( Figure 1 ). When comparing first and last sessions, there was a significant increase in frequency of positive affect and a significant decrease in frequency of negative affect, as parents tended to express themselves more positively even when discussing concerns, fears, and apprehensions as the treatment continued ( Table 2 ). There was also an increase in Humor/Laughter comparing the first and last sessions, with parents expressing the most humor during the middle sessions. Content for the discussions varied greatly between parents. Among parents, 78% had a significant decrease in Threat/Anxiety comparing the first and last sessions, with only one parent expressing more Threat/Anxiety in the last session ( Figure 2 , Table 2 ). The majority of parents had an increase in Benefit-Finding/Growth (78%), Treatment Confidence (67%), and Optimism/Pessimism (61%) with significant increases comparing the first and last sessions. The majority of parents showed no change in Protectiveness (55%), though there was a significant decrease comparing the first and last sessions ( Figure 2 , Table 2 ). No parents expressed an increase in protectiveness in the last session. There was a significant increase in the number of parents that were characterized as “resolved” comparing the first (6) and last (13) sessions ( X 2(1) = 12.25, p < .001) ( Figure 3 ). All parent narratives that were characterized as “resolved” in the first session were also characterized as “resolved” in the last session as no parents moved from “resolved” to “unresolved” during the course of treatment. Narratives characterized as “unresolved” in early sessions were largely focused on the negative aspects of their child’s pain, often times expressing active grieving and difficulty moving past their child’s chronic pain condition: “It’s hard when have a kid that’s in pain all the time. You know, it’s frustrating when all day, every day all they do is complain about their head and their belly.” Mom of 10-year-old, Session 2 “Yeah its super hard. It’s almost just like ugh, in the beginning it just hurts, hurts, hurts, and now I’m like, you just have to get mad, you just have to get mad. Just get so sick of everything.” – Mom of 13-year-old, Session 1 The few parent narratives that remained “unresolved” in the final parent sessions continued to show difficulty dissociating themselves from their child’s condition, often using “we” when talking about their child’s pain and taking on most of the responsibilities for their child. They also struggled to move past the need for “control” and the desire to oversee their child’s condition and direct outcomes. Additionally, many sought to lessen their child’s discomfort with graded exposures, seeking other forms of treatment that would not cause as much distress for their children: “ I think we will implement all that, going into it a little more slowly with the conditioning though, but we can try that, like he can do it once I guess.” – Mom of 17-year-old, Session 3 “ Because I set it up for her, then originally she started questioning everything about it and I don’t have a lot of control there so it’s not like…and unfortunately this is the hard part because I just don’t have a lot of control there once she gets there. ” – Mom of 12-year-old, Session 3 “It seems so unfair for him to have all of this physical pain and suffering and then to tell him that he has to overcome it. Where if there is a pill to give him, I would much rather do that…We are all just really exhausted, really exhausted.” -Mom of 13-year-old, Session 4 Parent narratives that were characterized as “resolved”, either in the early sessions or by the end of treatment, expressed an ability to move past the negative aspects of their child’s chronic pain condition and instead, were able to focus on positive gains and even minor successes. Those that were initially characterized as “unresolved” showed an active change in mindset in accordance with graded exposure treatment principles: “She thinks that her foot is always going to hurt and she just has to learn to deal with it. And I felt like what I heard is not exactly that. What I heard is that this is something that most kids can get to the other side of, but you have to learn to deal with the pain to get to the other side of it. Right?” Mom of 10-year-old, Session 3 “ And that’s what I keep telling her that everything that you have been nervous about and tried has worked out. And if it doesn’t work out then fine, check it off the list and we will move on to something else .” – Mom of 15-year-old, Session 2 Parent narratives expressed a wide variety of emotions, concerns, hopes, and beliefs that can be described by five common themes: 1) Self-Awareness, 2) Understanding Their Child’s Perspective, 3) Perceived Treatment Benefit, 4) Internalization of Treatment Principles, and 5) Hopeful Concern for the Future. These themes are considered in turn below. A number of parents recognized their own role in their child’s pain experience, acknowledging their own actions, beliefs, and behaviors towards their child’s chronic pain, whether in the past or present: “She has got me conditioned to do the same thing, where I park as close as I can so we don’t have to walk as far.” –Mom of 17-year-old, Session 1 “I realized I’m super anxious about getting through this moment that she is in right now.” –Mom of 10-year-old, Session 1 Some parents also expressed recognition for how their own actions and behaviors directly influenced their children and may have impacted the way in which their children responded to their pain. These ranged from negative influences to best practices when trying to help their child cope with his/her pain: “I didn’t think about that. I’m forcing her to act out to maybe remind me that she is uncomfortable or something.” – Mom of 12-year-old F, Session 1 “So that is something I need to work on as well. So, it is interesting, because sometimes I feel like she mirrors what she sees.”- Mom of 15-year-old, Session 3 “I have to say, after this last time, something shifted, when I heard you guys tell [child] that staying in school for an hour was maybe too much and he should consider it a victory that he was there for just half an hour. And two days later, I just sort of sat up and thought oh my god, every time he stays an hour I make him feel like he has just failed because he only made it for an hour.” – Mom of 13-year-old, Session 3 While many parents showed signs of increasing self-awareness throughout the treatment, a number of parents also showed signs of increased awareness towards their children. Many parents expressed that they were developing a greater sense of their child’s pain and the effects of that pain on their child’s well-being. A number of parents reflected on specific pain triggers that they noticed would precede their child’s pain flares and wondered if these triggers were associated with underlying causes of their child’s pain. Parents also often compared instances where their child’s pain seemed to be exacerbated and times when their child seemed to be unaffected by or unaware of their pain: “She is definitely triggered by her anxiety, the pain comes on when she is anxious about something…she is super, super sensitive to both of our emotions. I think, if you’re [father] having a bad day, or you seem upset, or I seem upset, she definitely, that like triggers her to start to worry and then she ends up with a headache.” – Mom of 10-year-old, Session 2 “If it is something that she enjoys, that is her passion, then she is not going to look like she is hurt.” –Mom of 11-year-old, Session 1 Parents also made statements regarding their growing understanding of their child’s views of treatment and expressed trains of thought that their child had that might be interfering with treatment progress: “ I know when she first got sick she definitely thought that she was just going to be like that forever, and she was probably not going to graduate from high school or do anything. And now I feel like she does want to do those things but she still gets stuck inside herself and needs to help herself and it gets frustrating. ” –Mom of 17-year-old, Session 1 “I think that part of it too is that she just kind of wants to get it done, so when we are here or she is at PT she has a distraction but when we are at home she is just kind of like, I just don’t have to.” –Mom of 13-year-old, Session 2 “I think that is the main issue. She’s questioning as to what her abilities are going to be, not only today, but what they are going to be down the road. There is a lot of that. A lot of that anxiety of when we get to that ladder and it is going up, how much of it am I actually going to be able to accomplish, I think.” – Mom of 11-year-old, Session 1 Most parents noted some aspects of growth and improvement in their child’s pain and/or their overall ability to cope with that pain. Many acknowledged reduced levels of pain in their child while completing activities, while others recognized a decrease in their child’s negative responses to pain, often noting successes over challenges: “I think this program has been great for her to do this summer because I have really seen her confidence go up and she doesn’t seem as focused or worried about her knee.” –Mom of 13-year-old, Session 2 “She is already…she’s just already thinking differently. I think she is already sort of seeing herself differently, she is definitely more active, she’s definitely more open.” –Mom of 12-year-old, Session 2 “I would say, that a couple months ago if she was on her feet for that long, she would be in obvious pain by the time we were leaving. So that’s a huge improvement, HUGE!” –Mom of 10-year-old, Session 3 Some parents mentioned benefits of specific aspects of the GET program. These related to the unique exposures their child was introduced to, means of goal setting and creating a hierarchy of activities to complete, and response strategies both the child and parent learned during the course of treatment. Parents often expressed relief to be in the program and gratitude for the tangible strategies they were provided with: “I think that what has been happening has just been exactly what I needed because since the first Comfort Ability [a one-day chronic pain program], I got all the messages that I am getting now, but I had no idea how to really do it.” –Mom of 13-year-old, Session 3 “She was literally on her bed downward and I said ok we are going and she came out a different kid on Monday night. Just from being in here and being distracted and doing the dance stuff.” –Mom of 17-year-old, Session 2 In many of the later narratives, parents started to reiterate the main principles from GET, articulating various treatment philosophies to the psychologist when recounting the days since their last treatment session. Most parents appeared to be able to move past unresolved notions about their child’s pain and develop more of a growth mindset: “It’s no pain no gain somewhere in this whole pain process .” –Mom of 17-year-old, Session 2 “I know she wants just a pill that will make it all better, but that’s not going to happen.” –Mom of 17-year-old, Session 1 “ I feel bad, but also, I mean you have to accept it. Ok this is where you’re at now, but it doesn’t mean you’re always going to be here. You’ll get back to it.” –Mom of 15-year-old, Session 1 Some parents would reference times in which they spoke to their children about the treatment process and their pain, often explaining reasons for the graded exposures. Other parents expressed internalization of the treatment principles presented during the educational modules by consciously changing the way in which they approached their child and responded to their pain. Parents conveyed times in which they changed their responses to the negative attributes of pain, refrained from rescuing behaviors, and identified times in which their child needed to take responsibility for their own pain development: “I will say, ‘Well they need you to do it at least more than once because you do it once and that’s great. But now, now you’ve done it twice and guess what? The next time when you do it three times, you aren’t afraid of it anymore. That’s why they are making you do it again.” –Mom of 15-year-old, Session 4 “I’ve taught myself with her to say, ‘What’s bothering you?” instead of ‘Do you want Advil?’, ‘Drink some water.’, ‘Oh my god! Another headache!’, which is my typical response to her.” –Mom of 10-year-old, Session 2 “ But we also have to watch her with that. Actually we can’t watch. She has to regulate that too because that spikes, that has spiked her migraines in the past. ” -Mom of 17-year-old, Session 2 While parents may have reported seeing benefits to the treatment, many still conveyed some concerns for the future. Although they were hopeful and optimistic about future outcomes and the possibility of continued progress, parents often aired apprehensions about finishing the treatment program. Some parents were particularly worried that their child’s gains, whether to decreased pain or improved pain management, would not be maintained or advance once the treatment was over: “I think in the last couple months she has been more interested and wanting to try new things, but if she stays on with it is a whole different story. But as long as she is trying, I will take it.” –Dad of 11-year-old, Session 2 “Now is there a chance that this could come back?” – Mom of 13-year-old, Session 3 “From the research I have read on the intensive cognitive behavioral therapy coupled with the intensive physical therapy, that is what works with CRPS. So, I want to be as supportive of it as I can be, but at the same time I have to be realistic.” –Mom of 11-year-old, Session 1 Parents also vocalized concerns regarding their child’s response to current pain improvements, such as the child not acknowledging their own gains or opposingly, exaggerating them, and concerns for how their child would react to future pain flares. Often these concerns revolved around their child’s ability to cope with future setbacks and continue monitoring their appropriate level of activity so there is not re-injury: “I can see that is a good sign that she doesn’t want to say anything, I want to go after this, but at the same time I am concerned that she isn’t going to self-regulate herself and she is putting pressure on herself.” –Dad of 13-year-old, Session 4 “I think that the thing that is going to be hard for him, or maybe you can put in a word, is that even if he does all this stuff, he may still have setbacks and that he may lose control. But that doesn’t mean the scaffolding didn’t work.” –Mom of 17-year-old, Session 1 Some parents also expressed the desire to be given strategies to cope with their child’s pain in the future, similar to an action plan in case complications should arise. Many questioned what their own responses should be in the future if their child’s pain returns or their child has another major setback in activity engagement and daily functioning. “ So I just wonder what exactly, how to progress if that does come up again? Who to see or who to call or what to do? If there is a lot of pain, if there is something we should try first and then try this or should we go straight to PT or…because I have had that question in my head so many times before you know? ” -Mom of 10-year-old, Session 3 “ For example with field hockey, she is having a really tough practice and then she has to pull the plug on that practice and she has practice again in two days. And one of her knees isn’t really feeling that much better so the question is, what’s the right approach to that? Should we maybe the day before that practice, let’s try one of the steps into that? Is there going to be a map? ”–Dad of 13-year-old, Session 4 “ Our biggest concern we already voiced to you like we are at this fork in the road of doing PPRC or just doing therapy and PT. Her and I are very similar in that we both have a hard time making decisions on our own. We would much rather be told what to do and like this, this is not a textbook kind of thing.” -Mom of 11-year-old, Session 3

Participants included 15 children and adolescents (13 female, M age = 13.6 years, age range 8-17 years) with chronic pain, and 18 of their parents (14 mothers, 4 fathers). Children were enrolled in a graded exposure treatment program entitled GET Living 18 . Youth and their parents initially presented to a multidisciplinary chronic pain clinic with chronic headaches, musculoskeletal pain, and/or neuropathic pain ( Table 1 ) and were categorized as having both high fear of pain (score >40 on the Fear of Pain Questionnaire (FOPQ) 19 and high functional disability (score > 12 on the Functional Disability Inventory (FDI) 20 , 21 . Exclusionary criteria included: significant cognitive impairment, significant psychopathy, acute trauma, active systemic inflammatory disease states, severe muscle atrophy or other biomechanical deficits, and current treatment with physical therapy. The youth were 93% Caucasian and 7% Biracial. Within the sample, 89% of the parents were married and 11% were separated or divorced. From the entire cohort of patients enrolled in GET Living (n=27) 18 , there were no video recordings of the first 12 patients. Among the 22 potentially eligible parents for inclusion, 18 had sufficient available video recordings from parent one-on-one sessions with the treating pain psychologist. Individual parents that attended only one session (1 mother, 3 fathers), thus precluding longitudinal analysis, were excluded from this study. Overall duration in the GET Living treatment program varied by participant from 50-82 days ( SD = 11.3, M = 64.3) with the first graded exposure occurring by the sixth session. The number of recorded parent sessions per participant ranged from two to five ( SD = 0.88, M = 3) with an average time span of 8.1 days between sessions ( SD = 4.5). Of those sessions, 76% were attended by the mother only, 7% were attended by the father only, and 17% were attended by both parents. Youth and their parents were enrolled in GET Living 18 , administered jointly by a cognitive-behavioral pain psychologist and physical therapist. Following a randomly assigned baseline period duration, youth and their parents met biweekly with the treating pain psychologist and physical therapist for a total of 9-15 sessions, each lasting approximately 60 minutes. Each participants’ treatment team remained consistent throughout the course of treatment. Throughout these sessions, participants were introduced to the concepts of fear and avoidance, 22 - 24 set treatment goals, and encouraged to engage in behavioral exposures, both in session and at home, that aligned with values and aimed at restoring daily functioning. During some of the exposure sessions, the parents and treating psychologist met individually while the physical therapist worked with the child on behavioral exposures in a separate room. These one-on-one sessions between the parents and treating psychologists provided an opportunity for parents to discuss their current perceptions of the treatment, their child’s progress, and their own experiences as caregivers. In addition, the psychologists introduced three educational modules: 1) Negative Attributions of Pain- addressing parents’ negative associations with their child’s pain and reintroducing them to the Interpersonal Fear Avoidance Model of Pain (IFAM), 2) Reacting vs. Responding- discussing the parental role in home-based exposures and responses that can improve their child’s level of activity engagement, and 3) Responsibility and Riding It Out- acknowledging their child’s responsibility for their own treatment development. These educational modules aligned with the child’s treatment progress and provided context, strategies, and recommendations for reaching future functional goals. Parent and psychologist sessions were video recorded with permission and later transcribed verbatim by the first author (JRC). Transcriptions were standardized to the first ten minutes of unguided open dialogue prior to the introduction of treatment educational modules. During these first ten minutes, parents were encouraged to speak freely about any developments since their last session, including their perceptions of treatment impact, not only for their child, but for themselves as well. This unstructured, and largely uninterrupted, parent-driven dialogue provided a rich narrative that encompassed both their perceptions of treatment progress and their general experiences of caring for a child with chronic pain. Two analytic methods applied to the parent narratives will be discussed: longitudinal macro-level coding and inductive thematic analysis. A coding system was adapted from the Pain Narrative Coding Scheme developed by Noel and colleagues 15 in order to assess parent affect and content. Originally based on the Family Interactive Macro-coding System (FIMS), 25 the Pain Narrative Coding Scheme utilizes five-point Likert scales to rate frequency and intensity of various emotions and pain-related topics discussed by the parents. For this study, the Pain Narrative Coding Scheme was adapted to include a combination of original and new affect and content codes that were most relevant for GET principals and that were suited for longitudinal analysis. All code definitions were discussed and defined by the coders (JRC and FM) and verified with the treating psychologists and senior study author (CS and LES). After review of the first three transcripts, the codes were discussed and revised. Additional discrepancies were discussed and resolved by consensus between the research team and the coders until code definitions were finalized. Three affect codes, all taken directly from the Pain Narrative Coding Scheme, were as follows: 1) Frequency of Positive Affect, 2) Frequency of Negative Affect, and 3) Humor and Laughter. Each affect code utilized a five-point Likert scale that explained how often that affect was expressed by the parent during the narrative, ranging from “Not at All” (1) to “Very Often” (5). A scaled score of 3 (i.e., “Sometimes”) reflected that the affect was expressed approximately half the time. Scaled scores of 2 (i.e. “Rarely”) required the affect being expressed only once or twice during the narrative, while scores of 4 (i.e. “Frequently”) required the affect to be expressed during more than half of the narrative. Affect codes analyzed parents’ explicit statements, tone, and body language. Video recordings were used to assess and code frequency of parent affect since tone and behaviors (i.e.: crying, laughing, etc.) could not be discerned from transcriptions. Examples of positive affect included expressions of excitement, joy, happiness, and contentment. Examples of negative affect included anger, frustration, weeping, anguish, and sadness. Six content codes were used to analyze direct, explicit statements made by the parents during the sessions: 1) Threat/Anxiety, 2) Benefit-Finding/Growth, 3) Treatment Confidence, 4) Optimism/Pessimism, 5) Protectiveness, and 6) Orientation Towards Chronic Pain. Unlike the affect codes, the content codes considered only explicit statements made by the parents (not non-verbal cues), and were analyzed from transcriptions. Of these six content codes, five used a five-point Likert scale, and one (Orientation Towards Chronic Pain) was dichotomous. Three of the content codes were taken explicitly from the Pain Narrative Coding Scheme, though their definitions were adapted to better suit this study: Threat/Anxiety, Benefit-Finding/Growth, and Optimism/Pessimism. The Threat/Anxiety code pertained to statements of fear, worry, and/or frustration towards their child, their family, or themselves, including words such as “worried”, “scared”, and/or “afraid”. The Benefit-Finding/Growth code reflected the extent to which parents expressed positive changes in their child, themselves, and/or their situation in general. The Optimism/Pessimism code pertained to future expectations, with high scores relating to more optimistic perspectives and lower scores relating to more pessimistic perspectives. Both the Treatment Confidence and Protectiveness codes were created for this analysis. Treatment Confidence pertained to how confident parents were that GET Living would lead to improved outcomes for their child, ranging from Very Doubtful (1) to Very Confident (5). The definition for the Protectiveness code was informed by literature on the Protect Scale of Adult Responses to Children Symptoms (ARCS) Questionnaire 15 , 26 , 27 and related to the degree to which parents described intervening on their child’s behalf in order to alleviate his/her discomfort, pain, and/or stress. Unlike the other affect and content codes that used a five-point Likert-type scale to evaluate parent narratives, the Orientation Towards Chronic Pain code was dichotomously assigned to be either “resolved” or “unresolved”, based on parents’ explicit statements pertaining to their chronic pain condition. This dichotomous code was drawn from the broader child chronic illness literature and specifically, the Reaction to Diagnosis Interview Coding System 28 , 29 . From this research, it was revealed that these meaningful classifications reflect the degree to which feelings have changed since receiving a diagnosis in terms of either moving on from (versus being preoccupied by) the trauma and disorganization that can be present, continually searching for alternative diagnoses, and holding unrealistic expectations in the face of strong contradictory evidence (i.e., negative test results). Importantly, previous research on parents of youth with chronic pain that used this coding scheme found using cluster analysis that this code, among all others, was one of the most important codes for differentiating whether or not a parents’ pain narrative was categorized as a resilient or a distress narrative. These narrative types were linked to parents’ feelings of helplessness about their child’s pain 15 . This empirical evidence provides support for the importance of this code and classification. Previously applied to parents’ orientation towards their child’s diagnosis 15 , 28 , 29 this code was modified for the current study to assess the parents’ ability to cope, comprehend, and accept the presence of their child’s chronic pain condition. Using this code, parent narratives were characterized as “resolved” if they expressed a change in mindset from the initial mourning and distress that accompanies the onset of caring for a child with chronic pain. They showed signs of moving past their grief and were able to focus on their child’s needs and rehabilitation. Parent narratives were characterized as “unresolved” if they continued to express difficulty with dissociating themselves from their child’s pain and/or may have been actively grieving. They may have also expressed preoccupation with why their child has chronic pain and/or held unrealistic expectations about their child’s condition. These preoccupations may have extended to the parents seeking additional treatments and/or evaluations or believing that their child would simply “grow out” of their condition. Transcriptions were independently analyzed in alignment with positivist coding reliability practices 30 using NVivo 11 31 software by two coders (JRC and FM) not involved in the treatment process. After assigning content codes to the transcript statements and assessing tone from the videos, each session was given a score for all affect and content codes independently from other sessions, participants, or coders. In accordance with guidelines, 32 intercoder agreement was measured by having the secondary coder (FM) rate 9 randomly assigned narratives (20%), representing 8 families, in order to assess reliability of code scores. The two coders were found to be in excellent agreement, with a kappa coefficient of 0.82. Any disagreements in coded scores were reviewed and discussed until a consensus was reached. Descriptive statistics (means, standard deviations, ranges, and percentages) were then conducted for all Likert-scale coded scores for first, middle, and last sessions. Middle session coded scores were determined for parents with greater than two recorded sessions (n = 10). If a parent had four recorded sessions, the score for the middle session was determined by averaging the second and third session scores (n = 4). A paired sample t-test was conducted for each code comparing first session and last session means. A chi-square test was completed for the one dichotomously assigned categorical content code. Inductive thematic analysis was applied to full narrative transcripts, using NVivo 11, by the two coders (JRC and FM) after familiarization with the parent narratives. In alignment with thematic analysis practices, 33 , 34 narratives were first openly coded to reflect expressed content. These initial codes were then used to construct themes that exemplified core content values. Debriefing between the two coders (JRC and FW), the second author (LCH), and treating psychologists (CS and LES) occurred at every phase of theme development to consistently refine and review the themes and their definitions.

This study longitudinally examined parent narratives in the context of their child’s graded exposure treatment (GET) for chronic pain. In multiple sessions between the parent and treating pain psychologist, parents were asked to share their perceptions and attitudes towards GET, evaluate their child’s ongoing condition, and describe their own experiences with caring for their child throughout the treatment process. Narratives analyzed from multiple time points allowed for the development of common themes and trends expressed by the parents as treatment progressed. A macro-level coding scheme was adapted from previous studies of parents of children with pain and chronic illness 15 , 25 , 29 to characterize parent narratives and evaluate changes in these narratives over time. Results showed that the coding scheme could reliably be applied to provide rich insight into evolving parent perspectives during the course of their child’s treatment. In accordance with previous findings, 14 - 16 the parents tended to express a sense of helplessness and distress at the beginning of their child’s treatment. Twelve parents were initially classified as “unresolved” due to their inability to dissociate from their grief, frustration, and improbable realities. However, coded narrative analysis suggested a reduction in these sentiments over time as parents seemed to express less anxiety and fear for the future, themselves, their child, and their overall family dynamic by moving past the suffering associated with caring for a child with chronic pain. Parents tended to display an increase in positive affect with each session, conveying more humor and lightheartedness even when discussing distressing matters. This in part may be influenced by the relationships they have built with the treating psychologist and reflect increased ease and comfortability with the treatment team over time. By the end of treatment, the majority of parents were in greater spirits, expressing more optimism and confidence in the treatment process, choosing to focus on successes rather than failures when recounting the days since their last treatment session. While most individual parents did not express change in protectiveness, as a whole there was a decrease in protective behaviors by the last session, suggesting those with the most protectiveness saw a marked decrease in protective behaviors in accordance with treatment ideals. While parent narratives varied in both content and affect, suggesting highly individualized experiences that are unique to each family, similar concerns, hopes, and realizations were expressed by the majority of parents during the course of their child’s GET Living treatment. These universally expressed apprehensions and insights were developed into five common themes: Self-Awareness, Understanding Their Child’s Perspective, Perceived Treatment Benefit, Internalization of Treatment Principles, and Hopeful Concern for the Future. Parent narratives were characterized by a sense of understanding and increased awareness not only for their child’s progress and pain experiences, but for their influence in that experience as well. Parents began to identify situations that triggered their child’s pain and expressed concern for underlying psychological stressors and anxieties that may be manifested as pain. In addition, they were vocal about their own stressors and the moments they were confused or frustrated with how best to respond to their child. Many parents sought tangible strategies that they could implement at home and discussed the positives and negatives associated with attempting at home exposures assigned through GET Living. It was in these moments of reminiscing that parents tended to reinforce the GET Living ideals of increased activity engagement and independent functioning, noting instances where they changed their own behaviors or thought processes to better address their child’s pain based on the principles they learned in treatment sessions. In many of these instances, parents directly applied strategies that they had been taught during the educational modules, highlighting the significance of parental inclusion with pediatric chronic pain treatment. In alignment with the educational modules, parents often moved past the These statements were further strengthened by the belief that their children were showing significant improvements since the start of treatment. Though parents continued to express concern for what the future may hold for their child’s condition and the possibility of reentering the fear-avoidance cycle, most parents articulated some way in which their child had benefitted from GET Living. By the end of the child’s graded exposures, parents not only recognized gains made during the treatment, but were more confident that those gains could be continued and built upon once the treatment ended. Further analysis should be conducted on child narratives to identify if similar changes in thought processes and perceived treatment benefit were expressed as well. Enhanced understanding of perceived treatment benefit from both the child and parent perspectives during the course of caregiver-inclusive therapies, such as GET Living, could potentially lead to improved treatment outcomes. Narrative analysis has been shown to provide a rich account of patient and parent experiences that can be utilized by clinicians to improve interventions 10 . Due to the unstructured nature of the initial portion of the one-on-one parent and treating psychologist sessions, parents opened up not only about their treatment experience, but their more general thoughts and experiences with parenting, providing rich narratives that could be used to evaluate and modify treatment progress. Unlike previous analyses, the themes and trends identified by this study discerned how parental thought processes and behaviors evolved over the course of a specific type of pediatric chronic pain treatment. Comparing narratives across treatment time points allows for the possible development of more individualized treatment targets and steps. For example, one might approach the parent educational interventions differently for those that are “unresolved” versus “resolved.” In addition, a parent’s and child’s underlying views of perceived treatment benefit may impact the extent to which they engage with the treatment program and adhere to home-based exposure recommendations. This study has limitations that provide directions for future research. First, this study was secondary to a larger clinical trial, GET Living, and as such, has limitations in the extent at which data were made available for parental narrative analysis. Because of this, recordings of parent sessions were inconsistent and some of the parents whose children were included in the larger treatment study did not have available video content for review. Of those included, 8 of the 18 parent participants only had two video sessions to analyze, while others with more than two sessions were able to provide more time points for comparison. As our analysis was limited to the individuals engaged in the larger GET Living study, our results describe the lived experiences of a specific cohort of parents, who were largely white and female. Future narrative studies within the context of treatment programs should prioritize parent narrative analysis and attempt to address and reduce barriers that limit participant diversity and consistent parental involvement as much as possible to increase the breadth of narratives. In addition, while unstructured interviews allowed for the identification of a wide range of parent perspectives and experiences, future studies could consider using semi-structured interviews to highlight particular areas of interest (e.g., perceived barriers to treatment and treatment progress) in order to gain more insight into these issues. Moreover, semi-structured interviews can increase consistency amongst clinicians and study personnel so that narrative discussions are more uniform and congruent. Finally, we cannot rule out the possibility that orientation towards a child’s chronic pain condition could change over time. Understanding how and why diagnostic orientation and uncertainty changes over time is important in light of new research showing it is linked to clinical pain and emotional outcomes 35 , 36 . In summary, this study analyzed the narratives of parents with children undergoing GET for chronic pain. Longitudinal analysis of narratives taken from multiple treatment time points throughout treatment allowed for the development of common themes and examination of trends in parent perspectives and experiences across the full treatment protocol. In the end, the overall majority of parents looked favorably upon the GET program, noting improvements not only in their children, but within themselves as well. It is our hope that an increased understanding of the parent experience may provide pediatric chronic pain clinicians with an opportunity to encourage more positive treatment outcomes and increase activity engagement in the children they treat. It is our recommendation that more conversations need to be had about how best to engage and incorporate parents into their child’s treatment. Future consideration should be given to applying these concepts of longitudinal narrative analysis to various forms of treatment and examining their use in modifying treatment programs.

Parents play a critical role in their child’s chronic pain treatment. Rehabilitative approaches to pediatric chronic pain require parents to respond to their child in a manner that is often considered counter-intuitive - to encourage their child to engage in activities that may increase pain, at least temporarily, in the service of long-term functional gains 1 - 4 . Given that parents spend a great deal of time with their children, they have the greatest opportunity to encourage and shape behaviors that promote return to daily function. In order to leverage the powerful influence of parents, many interdisciplinary treatment programs now incorporate parents and parent-specific modules as part of their child’s rehabilitative process 1 , 5 , 6 . Frameworks, such as the Interpersonal Fear Avoidance Model (IFAM), have supported the bidirectional relationship between parental factors and child functioning and the maintenance of pain-related disability and avoidance behaviors 7 - 9 . However, little research has considered parents’ own responses to and perspective of their child’s treatment that can potentially promote or hinder treatment gains, especially within the context of interdisciplinary rehabilitation. Qualitative methods are ideal for gaining a rich account of parent experiences of their child’s treatment. While quantitative measures are more commonly used within the context of pediatric pain treatment, qualitative methods have been used to illustrate the broader experiences of parenting a child with chronic pain by utilizing parent pain narratives (i.e., verbal accounts of pain experiences and beliefs) 10 . Narratives are highly communicative of personal patient experience 11 - 13 and when taken within the context of treatment, analysis of parent pain narratives may provide valuable insight into parents’ thought processes and responses to their child’s chronic pain treatment. Jordan and colleagues previously found that parents of children with chronic pain reported feelings of uncertainty, loss, and mourning as they struggled to gain control of their lives and their child’s pain 14 . Noel and colleagues expanded on these concerns of uncertainty by characterizing parent interviews as either distress or resilience narratives at the onset of therapy 15 . These narratives varied in both content and affect, as parents in the resilience cluster were found to express positive affect more frequently and had a more resolved orientation towards their child’s chronic pain diagnosis. In a more recent study by Jordan and colleagues, fathers reported feelings of helplessness, expressing a sense of paternal exploration as they re-evaluated their role as a provider within the context of caring for a child with chronic pain 16 . Similar themes of suffering and disempowerment were repeatedly expressed by parents interviewed during their child’s intensive rehabilitation therapy 17 . This qualitative analysis of parents’ evaluations during their child’s treatment process reflected individual expressions of fear, distress, and lack of control. By analyzing idiographic parent narratives, these studies shed insight into lived experiences and perspectives of caregivers of a child with chronic pain and provide a level of understanding that might have otherwise been missed in quantitative analysis. This study aimed to build upon existing research by applying a narrative approach to characterize parent experiences during a multidisciplinary exposure-based treatment for children with chronic pain who express high fear of pain and pain-related disability 18 . Segments of open-ended dialogue from multiple one-on-one sessions over the course of treatment between the parents and the treating pain psychologist were transcribed and coded in regards to affect (e.g. frequency of positive/negative affect and laughter/humor) and content (e.g. threat/anxiety, treatment confidence, benefit-finding/growth, optimism/pessimism, and protectiveness) using an adapted macro-level coding scheme 15 . Shared perspectives and experiences expressed within parent narratives were inductively analyzed and applied to the development of common themes.