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Chronic or recurrent non-malignant pain is a significant problem for many children and adolescents and often limits the child's participation in normal physical, academic, and social activities.
To better understand the impact of chronic or recurrent pain on children within the context of their own lives and experiences, using qualitative analysis, and to suggest the applications of the narrative method to clinical practice.
Grounded theory and narrative analysis of in-depth semi-structured interviews conducted at baseline and 6-12 months following clinic intake.
53 children ages 10-17 presenting with recurrent pain to a university-based pain clinic. This sample did not differ significantly from the overall clinic population during the study period.
Five common themes were identified; these suggested that isolation, changed self-perception, activity limitations and concerns about barriers to future goals, and lack of medical validation were important to the children's perceived impact of pain on their lives. Five narratives were identified, each of which provided a coherent, integrated description of the factors and perspectives presented by a specific subset of children at baseline. These narratives were then compared against the children's reports of improvement in pain and functioning at 6-12 months; from this comparison, a sixth narrative of therapeutic change emerged for some of the children.
The authors suggest that physicians and parents who take the initiative to elicit the child's narrative can help the child to rewrite the story to promote therapeutic change, a better outcome, and higher satisfaction.
Chronic or recurrent non-malignant pain is a significant problem in children and adolescents and often limits the child's participation in normal physical, academic, and social activities. Several well-designed studies have reported impaired functioning in children with chronic pain (1), and have demonstrated that such dysfunction is strongly associated with increased psychosocial distress (2-4) and with reduced quality of life (2,5-7). Chronic non-malignant pain may continue for many years in adolescents. Aasland and colleagues, in a prospective, longitudinal study, reported that chronic idiopathic musculoskeletal pain persisted in 59% of the children studied for as long as 9 years, and assessed pain and disability levels as equivalent to those in children with chronic juvenile arthritis (8). One five year study of children with functional abdominal pain found that, while the majority reported long-term improvement, about 15% had long-term risk for pain and impaired functioning (9). Hunfeld and colleagues found that chronic benign pain was reported at follow-up two years (10) and at three years (11) later in 30-45% of their subjects, without change in intensity or frequency. In the latter study, 42 adolescents were asked in open-ended interviews to discuss their functioning limitations and coping behaviors; these children reported persistent problems with physical activity, mental concentration, social interaction, and psychological stress (“moodiness”). Several of the children, however, had independently developed functioning strategies, which included daily exercise and planning of daily routines: “…pain had become part of the daily lives of several adolescents, who structured their activities and sleeping hours to prevent aggravation of pain” (11).
A number of well-designed trials have reported the effective use of cognitive-behavioral therapies (12,13,14,15,16), physical therapy (15), and complementary or alternative (CAM) therapies, such as yoga (17), biofeedback (18), and hypnotherapy (19), in improving pain and functioning in children and adolescents with chronic non-malignant pain, both immediately post-treatment and at six months to one year follow-up. Despite these promising reports, some children report more benefit than others; some fail to adhere to therapy recommendations (children of all ages demonstrate low rates of adherence to recommended treatments for chronic health conditions, ranging from 11% to 50% (20)); and, as discussed above, chronic pain may blight their lives for many years, with potentially detrimental consequences to their maturation into successful adulthood (8,9,10,11). This study uses a narrative approach to analyze qualitative data collected as part of a multi-method study (21) of a large group of children with chronic and recurrent pain and to consider how their stories, considered as integrated whole narratives, may help clinicians and parents to understand the different experiences and improve the treatment outcomes of children with chronic pain.
The use of patient narrative in clinical therapy and research, “narrative medicine”, introduced to the pain field in the now classic books by Kleinman (22) and Frank (23), has attracted a great deal of new interest in recent years. Rita Charon has been a charismatic advocate for narrative as a tool for teaching medical students and residents and for resensitizing professionals (24,25). The British Medical Journal has published a number of articles and sponsored a series of conferences discussing patient narrative as a crucial adjunct to quantitative and graphic forms of evidence in helping the practitioner make a diagnosis and recommend treatment (26). IASP Press recently published an entire volume of papers on narrative that originated in an invited 2003 gathering of scholars from multiple fields, organized by three leaders in pain scholarship (27).
A reading of this literature makes it clear that “narrative medicine” does not refer to a single methodology or to a single set of assumptions, research objectives, or clinical approaches. But some defining features emerge. We contend that true narrative must have these features: 1) Narrative is open-ended and inclusive. There may not be a clear-cut beginning, middle, and end to the story. There will almost certainly be an implicit beginning and a projected ending, but these may not be explicitly stated; and the narrative may integrate ideas or people or events not anticipated by the clinician, researcher, or auditor, because 2) The narrator must have freedom to shape the story. This very openness and flexibility of narrative may limit its generalizability and comparability, but it will also suggest the possibility of relationships, explanations, and solutions not previously imagined.
3) Narrative always has a plotline and characters. There is always at least one character, the protagonist, and often his/her relationships with other characters are important to the story. Equally important to the story is the plotline, which is some variant of the narrator's internal story, that ongoing construction s/he has created to make sense and meaning of his/her life, and according to which the events s/he recounts are selected and ordered, chronologically and in terms of importance (28). Often, in adults, the plot is so seamlessly interwoven with the person's life that neither the teller nor those who know him/her best could recognize it as such in normal circumstances. But an unexpected or discordant event, such as illness, will reveal the loose threads and incomplete patterns as the individual is forced to rethink the story and create a new narrative to inform a changed life (29).
Finally, the researcher must recognize that 4) Narrative in the telling is co-created. An individual constructs an ongoing narrative of a life or an illness or a recovery by telling fragments of the story, to others, who may reinforce its power and meaning by their acceptance or challenge one or more parts, with facial expressions, silences, lack of attention, or bits of alternate narrative. Any of these responses from his or her auditors may cause the first narrator to change the plot, pace, character development, and intended outcome of the story (30).
Mattingly's concept of “therapeutic emplotment” (29,31) demonstrates the key role of narrative in long-term interactions between clinician and patient. The rehabilitation therapist meeting the patient, in her example, does not simply prescribe exercises and activities to restore damaged nerves and muscles. The patient's illness or injury has disrupted a coherent life narrative and left him in a Kafkaesque world of loss and chaos, from which he may see no clear exit. The therapist must co-construct with the patient a new plotline of perseverance, optimism, and healing, replacing him at the center of an integrated, coherent, and dynamic story.
In clinical research, narrative analysis may be employed to answer specific questions, in conjunction with, or in preference to, a more structured, quantifiable method. The methods of quantitative data given primary value in meta-analysis and evidence-based medicine provide many answers to important therapeutic questions, but the knowledge base thus developed is imperfect, as Daniel Carr pointed out in his essay for the IASP narrative volume, “Memoirs of a Meta-Analyst” (32). Quantitative data abstracts knowledge from large populations and generalizes to the world at large, but the findings cannot invariably be extended to the individual patient; the selection of questions and data sets for quantitative studies involve choices made for subjective reasons, in which some variables, factors, and data must be pared away to shape the final objective result; finally the evidence may lack the emotional conviction to inspire cognitive or behavioral change in the practitioner. Narrative research ensures the importance of the individual subject even in a large sample; retains the integration of the complex multiple variables of real lives; and conveys the conviction of the narrator's own voice.
Here are some possible research questions that narrative may be best able to answer: Why don't all groups of patients respond as expected to a standard treatment that has been proven effective with a high degree of statistical significance in a large multicenter trial? What aspects of this treatment promote long-term well-being (33)? Why don't my patients respond as expected or adhere to the recommended treatment (34,35)? What aspects of diagnosis, or treatment, or of life with this condition, cause the most stress, or worry, or sense of loss, to patients, and what interventions can alleviate these treatment-complicating factors (36,37)? How have patients learned to cope with this disorder and to manage their treatment and will this therapeutic intervention help or hinder these self-taught coping strategies (38,39)? What are the experiences of less well studied groups with this illness and its treatment regimens – of children (40,41), of their parents (42), of the elderly (43), of disparate ethnic groups (44,45,46)?
There are of course multiple hazards and pitfalls in narrative research. The researcher must always be aware of the observer-effect presented by the interviewer. The interviewer or observer is an auditor like any other, though one who strives to maintain an attitude of non-judgmental acceptance; yet, as noted above, the narrator often changes the story as it is told to another person, in response to subtle changes in expression or posture which seem to indicate acceptance, disbelief or disapproval. Even the most experienced or poker-faced interviewer or observer will have some influence on the way the story is shaped, influence that cannot be measured precisely. Moreover, narrative evidence is verbal, with all the multiple shades of meaning inherent in the language. The best and most straightforward interview is full of tangential comments, half-finished thoughts, references that may be unclear, and information that may not appear to be part of the narrative on first reading, but on later review is found to be crucially relevant. Careful analysis of a significant sample of interviews is necessary to ensure valid findings. After the most rigorous analysis, the generalizability of a qualitative conclusion can never be stated with the precision of a p-value.
A final significant problem is that narrative research and analysis are time-and-labor intensive, both for the subject and the interviewer. Some subjects may be more taciturn or too diffident to share their stories for research, so that self-selection adds an unknown element of bias; again, time and effort may overcome some reluctance and reduce this factor. Collaborations between clinical investigators and those in the social sciences can help to make the best use of researcher time and expertise.
This report draws on in-depth, semi-structured interviews conducted with a large sample of children with chronic pain and uses narrative and thematic analysis to better understand the children's whole experiences of pain, dysfunction, treatment and outcomes, as integrated into their individual lives, and to consider in what ways clinicians and parents can support positive outcomes in children with specific narratives.
The sample consisted of 53 children ages 10-18 (36 female, 17 male; mean age 14.23 years) who presented to a tertiary university-based pediatric clinic with a chronic pain problem between March 2003 and March 2006. The children were 68% Caucasian, 15% Latino, 9% of mixed race, and 8% African-American, Asian-American, or other. The diagnostic breakdown was as follows: 58.5% reported headaches (migraine, myofascial, vascular, tension, or other), 37.7% functional neurovisceral pain disorder, 34% myofascial pain (of any body part excluding headaches), CRPS 9.4%; fibromyalgia 9.4%. (25 of the children, or 47.2%, reported more than one type of pain). The mean duration of pain prior to the Clinic visit was 50.7 months; reported duration ranged from 3 months to “all my life”. Almost half (24) of the patients had previously consulted five or more doctors; the mean number of office visits for pain in the year prior to intake was 6.26. This qualitative sample was part of a larger multi-method study that collected quantitative data on 179 children from this clinical population (21,47, 48,49); there were no significant differences between the qualitative subsample and the larger quantitative sample for any of the parameters listed above. The qualitative sample was the largest number obtainable from this population within the study period.
All parents of children in the targeted age range were asked at the time they made the clinic appointment if they were willing to learn about a research study. Only those families who agreed to discuss the research study were contacted for recruitment. The interviewer discussed the study with both parent and child to obtain verbal consent and then again reviewed the study with them at the family home to obtain written consent and assent. Approximately 70% of those contacted agreed to participate; the most frequent reason for non-participation was inadequate time to schedule the interview prior to the clinic appointment. Often these were patients who had been quickly scheduled into a newly opened cancellation slot.
60 consenting children participated in a 30-90 minute, semi-structured life history interview at home prior to their first Clinic visit; follow-up interviews were scheduled at 6-12 months post-intake. Seven children were lost to follow-up or declined to participate in the 2nd interview; the sample available for this full analysis was 53. The interviewers were trained graduate students who were instructed to maintain a friendly, encouraging, but noncommittal demeanor. To elicit the narrative, they used a standard set of open-ended questions and probes to guide the conversation, while encouraging each child to talk openly and develop his or her own trains of thought. Interviews were both audio- and videotaped. Each set of interviews was identified by a study code number and a pseudonym to ensure confidentiality. The interviews were copied onto DVD for video viewing and transcribed by an experienced transcriptionist, and reviewed against the audiotape for accuracy. All procedures were approved by the University's Institutional Review Board.
Transcripts were coded by the interviewers using QSR N*6 and were comparatively analyzed for thematic content, using a grounded theory approach (50). Each interview was read multiple times. Coding categories and comparative themes were developed from the interview content. Each theme identified was queried against the remaining interviews in the database, using a constant comparative method, and subthemes were combined under more generalized thematic headings.
Therapeutic outcomes were evaluated in terms of the children's own reports of improvement, or lack of improvement, in pain and functioning at 6-12 months. All the children spontaneously used the same language when asked at the second interview to talk about their pain problem: they reported they were “better”, “the same”, or “worse”. As these descriptors seemed most clearly linked to the children's own perceptions of how bad the pain was and how much it was affecting their lives, they were used as the qualitative outcome measures.
After the thematic analysis was completed, each set of baseline and follow-up interviews was analyzed for a narrative thread. Major factors that emerged as important to the narrative analysis were the child's self-description, activities used to cope with the pain, attitudes expressed toward the pain and its impact on his or her normal life and activities, expectations of treatment, expectations of the future, and changes in any of these factors between the first and second interviews. The extent to which pain, or other topics, had dominated the interview content, was also considered. Five narratives were identified, each of which provided a coherent, integrated description of the factors and perspectives presented by a specific subset of children at baseline. These narratives were then compared against the children's reports of improvement in pain and functioning at 6-12 months; from this comparison, a sixth narrative of therapeutic change emerged for some of the children.
Two sets of findings will be discussed: first, five common themes of major significance; and second, the six narratives found in the narrative analysis.
Five common themes descriptive of the children's experience emerged from the analysis of the baseline interviews, often repeated or rephrased in the follow-ups. These five themes may be designated as:
In summary, these children, based on their experiences of continuing pain and failure to have their pain medically validated, had often developed a sense of frustration and loss of potential, a deepening sense of isolation and difference from their peers, and lowered expectations of physician or parent help
Major categories of factors that emerged as important to the narrative analysis were the child's self-description, activities used to cope with the pain, attitudes expressed toward the pain and its impact on their normal life and activities, expectations of treatment, expectations of the future, and changes in any of these factors between the first and second interviews. The extent to which pain, or other topics, had dominated the interview content, was also considered. The analytic approach to some degree follows that of Frank (23); however, the subjects were not adults with established life narratives trying to make sense of a permanent plot change impelled by a chronic disorder; but children still forming their own narratives and identities, in which pain might or might not play an ongoing role. The analysis identified six major narratives, or plotlines:
In this narrative, the child and parents define pain as a medical problem which can only be solved by “the right” doctor, who will make the diagnosis, prescribe the correct medication or other standard treatment, and resolve the problem. As all the children interviewed were part of a clinical population, elements of this narrative appeared in most interviews, but in only a subset was this the sole or dominant narrative. In 5 of the 9 cases, the narrative came to a positive conclusion; the child's pain was resolved or significantly alleviated, an improvement perceived to be the result of either surgery or a change of medication. In 4 cases, however, the pain was reported to be the same or worse at follow-up, but the child and parents were still anticipating that the correct diagnosis and treatment would solve the problem or that the only way to alleviate the pain was through continued treatment.
Ivy, at age 15, had suffered from headaches and muscle spasms for about 18 months. She still attended school, although missing at least 2 days a month, but had given up many of her favorite activities. She had been given 8 different diagnoses by 8 different doctors and rejected all of them. Each time a new diagnosis was suggested, she reacted skeptically, read whatever information was given her about the suggested disorder, and found that it didn't apply to her; so she and her family resumed their search. She had tried various prescribed medications, most of which she described as “pointless”; at the time of the follow-up interview, she was taking two medications that had not helped her, but didn't seem to have any negative effects; she took them to please her mother. She was also seeing a psychotherapist and taking a yoga class recommended by the university-based clinic; she liked both the therapist and her yoga instructor, but didn't see either of them as helpful in relieving her pain or improving her functioning. Pain, she said, had become, “normal…a part of me.” Ivy believed that there was a physician somewhere who could help, but she had not yet found this person. At the follow-up interview, she reported that her pain was the same; she remained “apathetic” about the diagnosis suggested by the university clinic and had just seen a new doctor.
Ronald (age 16) had had several sports injuries when he was 13 and 14 that over time developed into constant back and leg pain. He had been diagnosed with fibromyalgia, and also suffered from irritable bowel syndrome, a hiatal hernia, asthma, and generalized anxiety disorder. Because of the pain, he was often dependent on crutches or a walker; he missed more school than he attended but had home tutoring, and had given up sports and most activities, but still participated in band and scouting. At the time of his second interview, he had had esophageal surgery and reported that the back and leg pain were worse; but felt that he had benefited from physical therapy and from learning some biofeedback relaxation skills, and that he might in time improve. He was taking fifteen different medications for his various diagnoses, which caused many side effects, including dizziness and drowsiness, but he felt that without them, he would be “immobilized, almost.” However, he sometimes skipped them and just lay down; “I just need to give my body a break.” Most of Ronald's interview was devoted to detailed descriptions of his symptoms, treatments, and reactions. He described himself as “constantly getting hurt.” He found the university clinic doctor nice and knowledgeable, but said he accepted that there was possibly only so much she could do. He appeared to believe, resignedly, that he would be coping with medical problems and pain for most of his life and spoke of himself without apparent sarcasm as “the lucky one” who had to cope with medical problems than others did not…
For children like Ivy and Ronald, their life narrative had become one of ongoing treatments and constant pain that was unlikely ever to be resolved. There will always be another diagnosis or another treatment. They were usually reluctant to consider complementary or alternative (CAM) therapies and tended to think that the best treatment would be a different medication. The pain did offer them some tacitly expressed benefits: a great deal of parental attention, and for Ronald, freedom from school, which he admitted was a major stressor for him. But it was nevertheless a constant blight: “it hurts so much that it's kind of hard to breathe.” The story recycles endlessly, as long as both parents and doctors are committed to the narrative and unable or unwilling to help the child to imagine a different plotline leading out of the cycle to a new story.
(9) In contrast to the children described above, who were actively, if negatively, involved in considering diagnoses and seeking treatments, the children telling the invalid narrative appeared to have been defeated by the pain. They coped with pain most often by sleeping or “just crawling up in a ball”, and although they docilely accepted treatments offered by doctors or their parents, they consistently reported that “nothing helps much.” Although the pain had often limited their functioning, they expressed relatively little interest in getting back to school or participating in former activities. Only one of these children, a boy whose abdominal pain resolved spontaneously, reported being better at the follow-up interview. Two of the others thought there was some slight improvement, but that the pain was much the same; three reported no change at all; and three children stated that the pain had become worse.
Tanya, at 14, reported having daily headaches since she was 4. She continued to go to school regularly, at her mother's insistence, and to shop and do things with friends, although “I don't really feel a connection to them.” She continued some activities, but without expressing much enthusiasm. Reading often bothered her; but watching television didn't hurt and sometimes helped her sleep. She had tried acupuncture, hypnosis, and meditation, none of which seemed to help her, and different medications, which did not work for her; she added that she didn't want “to be addicted to anything.” “I don't really do anything about it; I don't talk about it because there's no point in that…. I just try to do my [school] work as best I can.” But she often found it hard to concentrate. Tanya thought her pain might be genetic and “not anything you can fix”; she expressed only a small hope that it might be alleviated. She remembered one physician who had recommended physical therapy for her, and said afterwards that, of all his patients, “I had made the least progress.” Her mother, “always open to new ideas,” took her to the university clinic, where they “really didn't do much;” they recommended biofeedback and physical therapy, which Tanya tried, but did not persist with, as they showed no results. But she was resigned: “I'm not mad at the doctors.”
Jason, at 15, had had headaches for two years, that “slowly grew until they were really bad” and were now constant. When the pain became intense, he slept for an hour or two, which gave him some relief. He also used television and video games as distractions and would play games for hours at a time. Although he was interested in his school work, his headaches had made the daily school routine so difficult that he was transitioning to home study at the time of the follow-up interview and planned to work at his own pace. Jason said he had no real friends and his main social interactions were with his family or online chats with other gamers. He rarely left the house unless on a family outing. He thought the university clinic doctor “knew what she was talking about;” but the medications suggested had been only partially successful. The first had failed to relieve the pain; the second worked well, but then had a rebound effect, leading to even worse headaches; the third made him “real tired all the time”, and he and his mother agreed to cut back on the dosage. He was therefore still dealing with constant pain, using medications to reduce intensity. The only other treatment he recalled was acupuncture, which had not helped him. The clinic doctor had also suggested that Jason “get out in the world and talk to people, and not be crowded up in my room all the time”; at the time of the follow-up interview, he was still fairly homebound, but said he was trying to get out more by going on errands with his older brother.
Jason and Tanya's narratives told of passive, unaspirational lives – pain had contributed to their isolation, but their acceptance of their situation and apathy towards recommended coping strategies and treatments suggests a level of acceptance of their boxed-in lives that was not seen in the stories of other children. It is highly possible that they perceived life as beset by stress as the children in the next group and coped with this defensively by not coping and withdrawing into their homes and excess sleep. Of all the narratives in the study, the invalid's appeared the most resistant to revision, because they saw no potential for change. Possibly only by insisting on and strongly supporting small positive changes – that a child persist in an active skill-teaching therapy or in becoming more social in a small group – can parents and doctors help to break this cycle.
(11) This was the most common narrative in the sample. The children saw their lives as an ongoing struggle, in which pain was a major issue, but only one of a set of stressors, which could include school, self-expectations, difficult social relationships, and family conflicts. Stress was an important element in many other narratives, but these eleven children were more likely to see themselves as struggling alone, to feel overwhelmed by stress, and to use combative descriptions of themselves, ranging from “I can stand up for myself” to “My ideal is to be a Jedi Knight.” Only four of this group described themselves as definitely better at the second interview. Six children, however, stated that they had been helped by a new medication or a lifestyle change or by learning a relaxation or pain-management skill, and felt that they were getting better or expected to get better. They still saw themselves as stressed, but as less alone and less overwhelmed. Only one child in this group was resistant to all suggestions of change and described herself as still angry, with the “same old” pain at follow-up.
Mona was 13 at the time of the first interview and had suffered from headaches and fibromyalgia for about six months. She was a very creative girl, a self-described “drama queen”, who enjoyed acting, singing, writing, and interacting with others, and she had been a straight-A student. When her pain developed, it not only limited her physical activity, forced her to quit most activities, and kept her home from school, but damaged her concentration and lowered her self-esteem: “I've found everything more difficult since I've been sick.” She coped with energetic distractions, keeping up with her drama and speech classes, writing stories and poetry, reading several books a week, singing rock music out loud, and interacting with friends and online correspondents. But she was often reduced to tears by the pain and beset with worry about keeping up with her school work, losing her friends, and achieving her life ambitions (she named five different possible career choices). She worried as well about the burden her illness put on her divorced mother, the reduced attention given to her younger brother, classmates who were on drugs or pregnant, women's rights, pollution, and world hunger. At follow-up, the pain was “still there” and her “little pharmacy” of medications was no help, but she had been learning guided imagery and Reiki from a therapist recommended by the university clinic. She stated that she had learned from the clinic that the pain developed because she had overstressed and put too many demands on herself, and she realized that worrying about the pain was likely to make it worse, although she still found it difficult to prevent herself doing so. Reiki however made her pain “completely disappear” for periods of time, and she was learning the skills to “attune” herself: “I'm healing me…so it's empowering.”
Reuben was 12 years old when he developed “burning” abdominal pain and constipation, accompanied by frequent headaches. At the first interview, he had had pain for four months and already seen several doctors, and described the pain as a medical problem – “my valves are not opening when I eat”. He tried to go to school, where his teacher was “the best I ever had” and was continuing most of his activities; but, if he felt ill, he stayed home from school or from family outings, or skipped his daily swim in the backyard pool. He was worried about the pain getting worse and terrified of possibly having surgery or other “weird stuff”; but he also worried about keeping up at school, taking “big old tests”, being teased by classmates, not catching the ball when he played outfield, conflicts between his parents and older siblings, and the possibility that his brother or sister might be kidnapped or hit by a car on their way home from school. At the second interview, Reuben described himself as “a little okay”, but he was clearly much better, having not had pain for nearly three months. The university clinic had prescribed new medication, recommended more exercise, and told him not to worry so much, a recommendation he took quite seriously. He was actively playing softball and baseball, which he loved, and taking math from a new favorite teacher. But the major change in his life was that a family conflict had been resolved; Reuben never explained to the interviewer what the issue was and perhaps never exactly understood himself, but he was relieved that “everyone is getting along better…I feel happy that the yelling stopped.”
Children like Mona and Reuben write themselves narratives of lives fraught with hazard and drama, in which pain can serve both as a physical expression of their emotional distress and as an intensified focus of new anxieties and fears. Parents and doctors can help to write gentler, happier narratives by reducing major sources of stress – addressing family conflicts or modifying overloaded schedules – and by encouraging therapies and activities that teach pain-management and stress-reduction skills.
(8) These children were particularly good at masking their pain from others. They were often frustrated and distressed by it, but determined to continue normal lives and activities, making adjustments as necessary, but not allowing pain to alter their story lines. Much of the content of their interviews were devoted to other topics – interests or favorite activities – but with frequent references to “pushing through” or “just dealing with” the pain. Six of these children described themselves as better at the follow-up interview. Two had improved with new medication; two were helped by physical therapy and CAM therapies that taught them new management skills, allowing them to become less stoic and cope more actively; and two attributed their improvement to both medication and CAM therapies. One girl, who had not followed through on her treatment recommendations, stated that she was “pretty much the same”; and another, that she was worse, though she remained as active as before.
Colin, at 17, reported having had headaches for ten years, but the pain had become constant over the previous 24 months. He was about to graduate from high school and go on to college; he saw himself becoming independent from his parents, and spending his life working around boats and the ocean, since water sports were his passion, “like Nirvana.” He rarely talked about his pain to anyone but his mother or his girlfriend, self-medicated with frequent doses of Advil, and did not seriously think the pain would ever just go away. “I just have to live with it and go on with life…I still do whatever I need to do, and produce.” He had seen several doctors, but thought these visits had all been “a waste of money.” But it concerned him when the pain caused him to be “real mean” and “build walls” with his girlfriend and his family. The headaches had, on four occasions, kept him from his job at a local marina, and that was also a concern. At the second interview, the pain was still there, but less intense and less frequent, just “a dull pain” that Colin found much easier to deal with. He was able to distract himself with his favorite activities, and the pain “just goes back to wherever it usually is.” He was impressed by the university clinic doctor, who was “very clear-cut” and knowledgeable; she had recommended a new medication, which helped reduce the pain level. But he had found the most benefit in yoga classes, in which his whole family had participated; it helped him relax, “just all my muscles in my body would in turn help with my headache.” Although the headaches had forced him to change his plans for a career involving a lot of time underwater, he had found a related career path that excited him and been accepted into a four-year training program; “I just can't wait.”
Cassie (age 16) was one of the most active and articulate children in this sample. She was a photographer, hiker, singer, journalist, and environmental activist, and rarely missed school, although her headaches and body pain sometimes made it difficult to get through the day. She had however given up competitive sports. Her pain had begun with a basketball injury when she was 10, and evolved into “this constant throbbing, or this constant uncomfortability that's there.” She coped by focusing on her favorite activities, scheduling her hardest classes earlier in the day, and organizing her life to reduce stress levels. “I find that it takes a lot of stress off to have a schedule and to know what you're doing and to be able to communicate that with other people and then make sure everyone knows what you're up to.” But sitting in one place for a long time and sleeping all night were often hard for her. She told people she knew well about her pain, but refused to let them “consider it a big deal;” and had not told her parents how close to despair she sometimes felt. She had tried a number of therapies, including biofeedback, acupuncture, chiropractic, and physical therapy, as well as medications, but “all the things that helped seemed so temporary…a waste of time and money.” She had also seen a psychologist, but thought this unnecessary… “I consider myself a pretty stable person.” At her follow-up interview, Cassie was applying to colleges in other states and planning a trip to a conference in Asia. The university clinic had diagnosed fibromyalgia, which she accepted and had since researched extensively; they had also recommended yoga, which “definitely helps”. However, she felt the clinic had not followed through with her and had shown little interest in how she was doing after the initial visit. Cassie was confident that she could succeed in college and continue her activism, relying on her yoga skills to help her self-manage the pain. Despite this, she felt that her illness was “steadily getting worse…slowly taking over”, and she did sometimes dread the future.
Children like Colin and Cassie have very rich narratives in which they have given pain the role of a minor character, but often a very deadly one, that threatens to destroy the more positive aspects of their lives. They try to see themselves as having mastered the pain, but their very stoicism may make it difficult for them to reach out for help. Working with therapists that taught physical or relaxation skills did help the group in this sample; and parents and doctors may give additional support by helping stoic children to talk openly about their pain and coping endeavors in a positive and non-threatening way.
(8) This group of children were actively coping with their pain, using favorite activities for distraction, but also seeking help. They considered it a problem, but in most cases, tried not to let it interfere with their lives, and were fairly, if not completely, open with their friends and family. In some cases, there was a tendency to be overactive, with the risk of increased stress and pain. These children were open to medical solutions, but also willing to consider complementary and alternative therapies. Four of this group reported that they were better at the follow-up interview, having been helped by some combination of medications, changes in diet and sleeping habits, and CAM therapies, including yoga, guided imagery, and physical therapy. Two children, one a boy whose pain was related to a chronic organic disorder, thought the pain was about the same, but that they had learned new skills that helped them self-manage it more effectively. Two others who thought the pain was about the same or “a little less hurtful”, admitted they had not persisted with recommended treatments or lifestyle changes but stated that they planned to do so.
Madeline, age 12, had always led an active outdoor life, surfing, skateboarding, swimming, playing baseball and tennis, and taking dance, her favorite activity. Her schedule also included piano lessons until two years earlier, when the headaches she had had since about age 6 became more frequent. The year before the first interview, she had been having headaches three days a week and had given up piano, tennis and dance lessons. She dealt with them by resting briefly, using a cold cloth and taking over-the-counter medication with cold water. The headaches had almost disappeared during the summer, when her schedule was less hectic and she had the time to eat full meals, but she was worried about them starting again if she went back to her old activities, doing “too many things.” She said they would not keep her from going to school, but might prevent her from her favorite activities and from seeing her friends after school. She liked school, but worried about getting her homework done and keeping up her grades. At the second interview, Madeline reported being much better; “I barely have headaches now.” She then admitted she did still have mild headaches, which she dealt with as before, but now also using guided imagery skills: “I'll just like relax and think of something in my mind.” She also was careful to eat full meals regularly and had organized her study schedule to get things done more efficiently; “now my body knows how to treat it and stop the headache before it comes.” She had a somewhat more moderate schedule, but had happily resumed dance lessons twice a week. She remembered little about the visit to the university clinic, which like previous doctors' visits she regarded as a boring but necessary interruption of her busy life, but was grateful that they had recommended the hypnotherapist who taught her to use guided imagery.
Robin was 17 at intake and reported having had headaches for 7 years; she also had back and shoulder pain following an auto accident. She had been a competitive athlete for 7 years, but had quit the previous year when the constant practicing became too rigorous, “a little bit” because of the pain. She continued swimming and surfing, submitted art work to local shows, had graduated from high school and was taking summer classes. She dealt with the pain by resting briefly, taking aspirin with cold tea and taking a short walk; surfing helped, if she could find an uncrowded beach. She had not dropped any activities other than athletics, but sometimes they took her longer, and she was concerned that at some time it might interfere with “something important I have to do.” She had talked to her divorced parents about the headaches, but had not told them how frequently they occurred, as she was concerned they might “over-react.” The university clinic gave Robin “a new sense of validation” and “a kind of hope for the future”; they prescribed some new “little pills” that she found helpful and also recommended several CAM therapies. At the time of the follow-up interview, she was looking forward to trying several of these, but had been forced to wait for reimbursement to be approved. In the meantime, she had started yoga, which was “strengthening” her body. She had started college, was planning to transfer out of state, and also looking forward to a surfing trip to Mexico. She felt she was dealing better with the pain, but hoped, that with “so many options” for CAM therapy, she would soon be able to become still “more active…more energetic…more in control.”
Madeline and Robin, and children like them, imagined their lives as full of interesting challenges and open to change. Like the stoics, they tried to reduce the role that pain played in their story, but unlike them, they viewed it as a problem that they themselves needed to solve and probably could solve. They were ready to learn new therapeutic plotlines that would diminish the importance of pain in their lives. Doctors and parents can help these positive thinkers by encouraging lifestyle changes and participation in skills-teaching therapies and by helping to resolve scheduling, reimbursement, or motivation problems that might inhibit positive change.
(8) Eight narratives were particularly noteworthy because the children described themselves as having made their own personal decisions to change their lives in a positive way. One child in this group had been a positive thinker and active coper at intake, four had been overstressed soldiers, and three had been passive invalids. Seven of these children reported being “much better” at follow-up, in four cases citing help from specific therapies and three reporting lifestyle changes. One girl, who had described herself as an invalid at her first interview, had decided on her own initiative to return to school and her former activities. She had become a stoic and reported the same level of pain as previously, but suggested that she was open to further change if given support.
Winnie (age 16) had for two years experienced ankle and hip pain that hampered her as a dancer and were accompanied by headaches. She had not missed “a single day” of school, where she particularly enjoyed “hard, challenging” classes like math, and continued dancing, swimming, taking an aerobics class, and participating in several volunteer groups. She coped by taking short rests and taking Advil or Aleve. However, the pain often made her “sad and depressed”. At the beginning of her junior year, after taking some time to relax during the summer, she decided she didn't want “a life run by pain… [and to] start ignoring the pain that I know is there so that I can do all the activities that I want to do and not let it restrain me.” She decided to stop doing the things she found most intensely painful – specifically swimming laps – and to concentrate on enjoying other activities – dance, aerobics, and shopping – even if there was some level of pain. “I just don't listen.” She reported in her second interview that the university clinic had supported her decision by taking time to talk to her and helping her to “figure out how I could be the happiest person, not just the person in least pain.” They had recommended a physical therapist, who gave her home exercises to strengthen her legs and correct her alignment; these were “really cool” and the most beneficial help she had received. The clinic physician had also prescribed some medications that Winnie had later weaned herself from, returning to OTC drugs. Her parents and teachers had noticed the “transformation” and become supportive. At follow-up, she was applying to a long list of out-of-state colleges and felt that she was in control of how much she felt the pain and that, consequently, it had diminished in intensity.
Barbara at 12 suffered from pain in her knees, back, neck, elbows, shoulders, and stomach; a previous doctor had recommended a wheelchair, to “do everything you can to prevent injury”, and she now used it at school or anywhere that she might otherwise have to walk any distance. She could not remember a time when she had no pain, but it had become constant in the last three months and severely limited her activities. She could no longer play sports, had missed a lot of school, and then found it “nerve-wracking” to go back to classes in the wheelchair, since not all her friends and teachers had been supportive. None of the medications she had tried relieved the pain and several had distressing side effects; physical therapy had given her more pain; relaxation did help, but she found it very difficult to do. Barbara liked reading and listening to music, but her baseline interview was almost entirely taken up with her pain, her medical experiences, and her fears that the pain would worsen, although she tried to be positive. At six months, she had more to talk about. She had participated in several therapies recommended at the university clinic, including physical therapy, art therapy, biofeedback, hypnotherapy and yoga, and found them all “good experiences.” The turning point however was a summer trip with her mother, in which she had gradually taken one challenge at a time, making herself sit for long periods, walk for some miles, walk up and down stairs. “I was kind of scared…I had a feeling that there was something that I could do that I wasn't doing, that there's something else that I need to do for myself, and I was ready to try it.” Her mother was surprised but supportive. At follow-up, she was able to walk with orthotic supports, was attending a new school, and didn't notice her pain as much, or not at all “when I'm really doing something that I just love.” She was writing, doing art projects, working with volunteer groups, and having sleepovers with friends.
Brian had developed back pain during a bout with whooping cough when he was 9 years old, pain that still troubled him at age 12. He was no longer able to surf, ski, or play soccer, and missed these activities. He was very active as a musician, taking classes and participating in orchestral performances; although he had enjoyed his recent school years, he was now enrolled in an online home school program for gifted children that he found challenging and that allowed time for his music. He had tried various medications and massage, which had not helped, so he coped by limiting his movements and using a back support. Brian was easily stressed by difficult social relationships (he was bullied at one school), travel, and very long days, and stress tended to affect him physically, “enclosing me,” and worsen the pain. His deepest anxiety was that his back pain would get worse and keep him from playing his music. He had seen a psychologist for a while and was prescribed Prozac, but was dubious about psychotherapy, because he doubted that the therapist could get to know a patient really well. At the follow-up interview, Brian reported being much better both physically and emotionally, a change that he felt resulted from his work with the university clinic and the psychotherapist they had referred him to; she had helped him to reach “my big turning point to commit and just to try and get myself a better life.” He said he had learned to think more rationally about problems and to see how he created stress for himself. He had also followed up on clinic referrals to a physical therapist, who taught him exercises to become more flexible and “maneuverable”, giving his back “a chance to heal”, and to a hypnotherapist, who helped him to use imagery to reduce stress. He was still deeply into music, and was somewhat more active, able to run and play basketball, but was only “pain free” when “deeply distracted.” But his new skills had helped to reduce his pain, which in turn helped him to believe that the pain would diminish still further and perhaps end altogether.
Each of the decision-makers' narratives, like Winnie's, Barbara's, and Brian's, was individual to the patient; but, taken as a whole, they suggest that even children who may seem trapped in stagnant narratives possess the capacity to rewrite their plotlines, refocus their attention, and take on self-management of their pain, if given encouragement and support to do so. Support may involve, on the clinician's part, listening carefully enough to the child's own history to get a sense of his or her narrative and how the plot can change, helping the child and parents to “figure out how [s/he] could be the happiest person”, and providing referrals to therapists that can teach physical exercises and relaxation, adaptive coping, and distraction skills. The parent can offer ongoing support for the child's independent initiatives to manage pain and to reimagine their narrative and perhaps restrain the natural tendency to “kiss it and make it better” by taking all responsibility to solve the problem for the child.
Children and adolescents presenting in clinical settings with chronic pain of extended duration often share many characteristics which are well-known and documented in the literature: anxiety, depression, low self-esteem, and parents (particularly mothers) who suffer increased distress (9,21,42,51,52). This qualitative study seeks to understand the children's experiences, not in terms of individual factors, but in terms of their integrated life experience, and to ask if that understanding can be useful in clinical practice.
The present narrative analysis suggests that while children with chronic pain have many similar characteristics, each child has an individual story to tell, one that he or she often wants to share with another person who would respect the story and react in a positive, helpful way. These have been characterized in this paper as six archetypal narratives, describing some common ways in which these children and adolescents tried to understand and integrate chronic pain into the emerging identities they were forming for themselves within the context of their individual families and sociocultural backgrounds. A number of the children in this sample came to the university clinic with narratives that seemed to allow for little rewriting or change in their approaches to pain. Yet their reported experiences at follow-up, particularly those of the decision-makers, indicates that plot changes are often possible; or, to put it slightly differently in the words of one recent study with adults, that “individuals with varying levels of resourcefulness” can develop a commitment to and skills in pain self-management (39).
As the thematic analysis of our interview database shows, this group of children report extended histories of physician encounters and treatment failures. Their experiences of recurrent pain, without physician validation, have added to their feelings of frustration, have increased their sense of isolation and difference from their peers, and have lowered their expectations of effective help from physicians or parents (48,49). For many primary care physicians treating such a child, it may seem that referral to a psychotherapist or tertiary care specialist is the only answer. Individual or family therapy, especially using a cognitive-behavioral or coping-skills model, has been shown to be effective in many studies (12,13, 14,16). But it is important to recognize that these therapeutic options may not be available or affordable for many families of children with chronic pain, and that many parents and children may be resistant to a recommendation that seems to imply that the pain is “not real.”
How can the narrative be rewritten in the clinical setting? What we hear in the children's stories is the wish the pain would stop, but equally strong, the wish that someone would understand “what I'm feeling inside.” A study of adults with cancer has also suggested that emotional disclosure through narrative can help to improve pain and well-being in a clinical setting (53). A few questions such as, “what do you usually do when you get a headache at school?” or “what bothers you the most about your pain?” can help bring out the story the child has written in his or her mind. The clinician can then, by showing his/her understanding of the individual narrative, make it a basis for suggesting a new plot direction and for supporting the child's own ability to make positive changes and commit to “a better life”. This narrative approach may help reduce the child's sense of isolation, encourage therapeutic adherence, and promote a positive outcome.
In this study, qualitative analysis of a database of baseline and follow-up interviews with 53 children presenting to a tertiary pain clinic elicited five common themes and six major narratives. The common themes were: the choice to hide pain from parents and friends; a sense of isolation and difference from peers and classmates; pain as an obstacle to personal activities and goals; fears about how pain will affect the future; and perceived lack of physician understanding. These themes were not unrelated but, taken together, suggested an increasing sense of isolation from the child's own sense of the person s/he wanted to be and from others who were unable to share the experience, based on experiences of continuing pain and lack of medical validation or helpful treatment.
The narratives identified were: the constant patient; the invalid; the weary soldier; the stoic; the positive thinker; and the decision-maker. Each represented a coherent, integrated perception of life experience, of the role of pain within experience, and of the appropriate way that the child should understand and deal with the pain. The children's stories demonstrated that narratives were not static or stereotypical, but could be rewritten with therapeutic help. Many of the children stated in their own words that physicians had not heard the story they had to tell. It is suggested by the authors that the physician or therapist who hears that story can help the child to take positive steps toward therapeutic change.
The interviews described in this paper were part of a larger multi-method study (21), in which children and parents were also asked to complete quantitative measures at baseline and at follow-up and in which the clinic intake interviews were videotaped. Thus, further analysis of the quantitative database may identify specific psychosocial factors that differed between narrative groups or between children who reported improvement at follow-up and those who did not. Study of the clinic intake interviews (54,55) may elucidate specific clinical factors that fostered change in some children but were absent from the interviews of children who did not improve.
Finally, in thirty of these cases, interviews were also conducted with the child's mother prior to clinic intake and at the 6-12 months' follow-up. Analysis of the mothers' own narratives, their perceptions of their children's stories, and of the ways in which they describe themselves as promoting or sanctioning the children's efforts to change, will help to further illuminate the experiences and therapeutic outcomes of children with chronic pain.
This research was supported by NIMH grant R01 MH 063779 (PI Margaret C. Jacob) and by a seed grant from the Mayday Fund. The invaluable help and comments of Ignasi Clemente, the guidance of Michael Nutkiewicz, the administrative assistance of Edward Curnen, and the interviewing, coding, and transcription work of Arianne Gaetano, Reynal Guillen, Ryan Hodgkinson, Marian Katz, Howard Padwa, Tanya Stivers, and Suzanne Walter are gratefully acknowledged. We would also like to thank the adolescents who participated in this project.
*All proper names used in this section are pseudonyms.