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This paper uses a mixed-methods approach to examine the impact of pain-associated functioning limitations on children's lives and the strategies they develop to try to continue functioning. Forty-five children ages 10-18 completed standardized questionnaires and participated in semistructured interviews prior to intake at a university-based tertiary clinic specializing in the treatment of pediatric chronic pain. All the children reported that pain limited their functioning in everyday activities and that these limitations caused them frustration and distress. Qualitative analysis identified three distinct functioning patterns or groups, which were designated as Adaptive, Passive, and Stressed. The groups did not differ significantly in demographics or clinical pain characteristics. Adaptive children continued to participate in many activities and were more likely to realize that focusing on pain would heighten their perception of pain. Children in this group reported more effective use of distraction and of other independently developed strategies to continue functioning. Passive children had given up most activities, tended to use passive distraction when in pain, and were more likely to feel isolated and different from peers. Stressed children described themselves as continuing to function, but were highly focused on their pain and the difficulties of living with it. The qualitative groupings were supported by quantitative findings that Stressed children reported a higher degree of social anxiety than did Passive children and were more likely than the other groups to report experiencing pain throughout the day. Finally, Adaptive children were rated by their parents as having better overall health compared to Passive children.
Chronic intractable non-malignant pain, with associated limitations in physical, academic, and social functioning, is a significant problem in children and adolescents. Several well-designed quantitative studies have shown that impaired functioning in children with chronic pain is strongly associated with psychosocial distress (1-3) and with lower quality of life (1,4-6), and that children with unexplained chronic pain often report significant dysfunctions in everyday activities (7). Although impaired functioning diminishes quality of life for children with chronic pain, we have relatively little research evidence regarding its prevalence and severity, why some children experience more limitations than others, how children and families cope with functioning limitations, and which treatment interventions are most successful in improving functioning (8).
Chronic non-malignant pain may persist for extended periods of time. Chronic idiopathic musculoskeletal pain was found in one report to persist in 59% of cases for up to nine years; the authors found the children to have pain and disability levels comparable to children with chronic juvenile arthritis (9). Hunfeld and colleagues in the Netherlands have shown that chronic benign pain may persist in 30-45% of cases for up to two years (10) and three years (11), although without increase in intensity or frequency. In the latter study, 42 adolescents described their functioning and coping skills in open-ended interviews, and identified ongoing problems with physical activity, mental concentration, social interaction, and psychological stress (“moodiness”), particularly with increased pain severity. Several of the children, however, had developed their own functioning strategies, including 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-validated instruments have been developed for the assessment of functioning in children with chronic illness (for example, the Functional Disability Index (FDI) (12) and the Child Health Questionnaire (CHQ) (13,14)). Such quantitative self-report measures are excellent for comparing functioning levels between treatment groups, for tracking changes in groups over time, and for correlating functioning scores with scores on psychosocial and quality of life measures. But even well-validated quantitative instruments cannot fully assess the individual child's functioning choices and strategies, and his or perceived or real ability to continue to carry out specific real tasks in real-life situations. The items listed on the scale – “walking up the stairs” or “doing something with a friend” -- may or may not be those most important or most difficult for the child to accomplish daily. Moreover, quantitative self-report cannot fully describe the strategies children use to continue real-life functioning or what factors make a particular strategy most effective for a particular child.
This paper reports on initial findings regarding the functioning limitations and strategies identified through mixed-methods analysis in a sample of 70 children reporting with chronic or recurrent pain to a university-based tertiary clinic. Both qualitative and quantitative data are examined to arrive at a better understanding of the impact of pain-associated functioning limitations on children's lives and the strategies they develop to try to continue functioning.
The participants were drawn from a larger sample of 175 children (122 girls, 69.7%) with a mean age of 14.2 years (SD = 2.4, range = 8-18 years), who presented for treatment at a multidisciplinary, tertiary clinic specializing in pediatric chronic pain between April 2003 and March 2005. The current study included 45 children (32 girls, 71.1%) with a mean age of 14.7 years (SD = 2.4, range = 10-18 years) who had completed videotaped oral history interviews prior to clinic intake. Ethnic composition for the present sample was: 64.4% Caucasian, 11.1% Latino, 2.2% African-American, 2.2% Asian American/Pacific Islander, 20.0% other (mixed race). Parents were mostly mothers (n = 36, 80.0%) with a mean age of 46.8 years (SD = 7.1, range = 32-67 years). Highest level of parent education was: high school diploma 5.3%, some college or associates degree 39.5%, college degree 26.3%, post-graduate degree 28.9%.
Among the 45 children in the current sample, presenting pain diagnoses were (note that percentages sum to more than 100% due to multiple pain diagnoses): 54.8% headaches (migraines; myofascial, vascular, tension, stress-related or other type of headaches), 45.2% myofascial pain (of any part of the body excluding headaches), 38.1% functional neurovisceral pain disorder (functional bowel, uterine, or bladder disorder), 14.3% complex regional pain syndrome, type 1 or type 2 (CRPS-I; CRPS-II) and 9.5% fibromyalgia. Multiple pain diagnoses were present in 52.4% (n = 22) of the sample. Children reported suffering pain for periods ranging from one month to “all my life”: average duration of symptoms was 51.0 months (SD = 58.2, range = 1 – 215 months). All of them had seen at least one physician prior to referral to UCLA and the majority had seen three or more.
Institutional Review Board (IRB) approved written informed consent forms were completed by parents, and children provided written assent. All study procedures were approved by the UCLA IRB.
The recruitment rate for the oral history component of the study was 57% of eligible children whose parents agreed to receive information about the study. The reasons most often given for non-participation were that the child was too ill to be interviewed or had too busy a schedule to allow time for the interview. Only two potential subjects objected to the videotaping of the interview. Three children who enrolled had to be excluded when there was not enough time for the interview to be scheduled prior to the clinic intake (as required by the study protocol). Although we cannot exclude the possibility of some selection bias, the children in the present sample did not differ from the full sample of 179 with respect to age, sex, race/ethnicity (Caucasian vs. non-Caucasian), which parent participated, parent age or parent education.
Fifty-one adolescents completed videotaped interviews between March 2003 and March 2005. Of these, six were withdrawn from the study: two cancelled the clinic intake appointment after the interview; two had to be excluded due to technical problems with the tape; one was withdrawn for medical reasons and one when an issue of domestic abuse arose during the interview. The remaining 45 are used in the current analysis.
Each child was interviewed at home, in his or her own room if possible. The interviewer was a trained graduate student who used a script which outlined the topics to be covered and provided suggested questions. However, interviewers were instructed to use probes and follow-up questions to elicit substantive answers and to allow the conversation to develop spontaneously at the child's own pace and level of interest. Interviews ranged in length from 45 to 135 minutes and were videotaped using a Sony camcorder. Although a few children were shy, most spoke quite freely and appeared comfortable with the taping. Several expressed satisfaction with the opportunity to speak freely to an interested neutral listener. The protocol called for the interview to be done privately and for the tapes not to be shown to parents.
Following the taping, DVD backups and audio tracks were made and the interviews transcribed by an experienced transcriber. Transcripts were reviewed for accuracy by the research team, proper names deleted and replaced by pseudonyms before analysis began. Transcripts were then coded using the N*6 coding program; codes were developed based on readings of the first set of transcripts and then continually reviewed and refined as the coding process developed. Using the coded interviews as guidelines, one researcher then conducted a grounded-theory analysis of the 45 initial interviews, reading each transcript several times, taking detailed notes on each interview, creating datasheets to track the recurrence of data and organize the data conceptually (15,16). In some cases, where the transcriber had found it hard to understand the child, the videotape was reviewed to ensure the maximum accuracy possible. A second researcher independently tracked specific data items and the two analysts then compared these and resolved discrepancies. It should be emphasized that this was a preliminary analysis only, and that further refinements will emerge with the continuing work of the research team and with the transcription and analysis of the remaining 25 interviews and the 40 parent interviews conducted for this study.
The procedure for administration of the quantitative measures has been described in detail previously (17,18). Briefly, prior to the initial clinic visit, two questionnaire packets, one for the child and one for a parent, were mailed to the home. Children and parents were instructed to complete the measures without consulting one another and to bring the packets with them to the initial clinic appointment. The quantitative measures assessed demographic and general health information including aspects of the child's pain, anxiety and functioning. Only measures relevant to the present investigation are discussed below.
Functioning limitations stood out as the predominant theme in the set of 45 interviews. “It [the pain] keeps me from doing a lot of things I like.” 35 of the 45 children (78%) stated that the major problem presented by the pain was that it had kept them out of school or from participating in a favorite activity. When asked how the pain made them feel, the children identified some 18 different emotions, including anger (14), depression (6) or sadness (7), fear (11), fatigue (10), worry (8), and acceptance or resignation (7), but the most frequently expressed emotion was frustration or annoyance (25) at the limitations they faced in normal functioning.
Children dealt with their limitations and frustrations in different ways. Through the process of inductive analysis and constant comparison, three recurrent patterns of behavior were identified, on the basis of which the children were divided into three groups, designated as Adaptive (A) (n = 13); Passive (P) (n = 13); and Stressed (S) (n = 19). The groups were based on these factors: children's school attendance; attitudes toward school attendance; participation in active (anything from softball to writing poetry) or passive (watching TV or resting) activities; primary coping behaviors when experiencing pain; attitudes toward activities dropped or abandoned because of pain; attitudes toward activities that were found difficult. Because the sample is small, not all observed differences can be quantified as statistically significant; but the common patterns in each group merit further study. Note that these patterns and differences were not determined by the researchers in advance, but were identified and assessed inductively through the process of constant comparison of the interview data presented by the children in their own words. Our qualitative analysis identified no major differences in the emotions expressed or kinds of stress factors identified by the three groups, but there were clear behavioral and attitudinal differences.
Four self-descriptive themes (see table 1) were identified recurrently in the interview data and tabulated independently of the factors considered in the analysis of functioning patterns. These were a) A sense of isolation and difference from peers. 53% of the children stated that they felt their pain separated them from their friends and classmates, who could not understand their experiences. For example, a 15 year old girl commented that “It's frustrating to see that it doesn't seem like they have to be as aware of like the inner workings of their body.” b) A realization that expectation of, or attention to, pain increased the likelihood of feeling pain or increased its intensity. A significant minority (37%) of the children stated that they realized they were more likely to feel pain if they focused their attention on the pain site or asked themselves if they were feeling pain. c) Worries about the future. Although all the children stated concerns about whether the pain would prevent them from doing normal activities, slightly more than half (51%) talked about further worries that continuing pain that might prevent them from doing well in college, pursuing a career, or having the kind of life they had planned. d) Hiding the pain. More than half of the children (62%) stated that they tried to conceal the intensity and frequency of pain from parents, friends, and teachers, either because they didn't want others to worry about them or because they felt they could not understand.
Adaptive children were the most able to continue to function. These children reported that they kept up school attendance, although they were sometimes forced to come home early if the pain was bad, and that they continued most activities. Half (6) reported having to give up a favorite activity, but all 13 discussed one or more activities in which they continued to participate. In coping with the pain, 4 stated they used medications, and 7 reported that they often just rested or slept; but all listed several distractions that helped them to ignore the pain and stay active. These children were more likely than those in the other two groups to realize that focusing on the pain would heighten their perception of pain, and less likely to report that they felt isolated or “different” from their peers (see table 1).
Passive children coped with pain by allowing it to take over their lives and limit their functioning. 11 of the 13 said that they coped by sleeping, “vegging”, or “just curling up in a ball”. Of the other two, one said that she stayed home and read, and the other that she relied on medication. Three others also mentioned medications. Only three in this group mentioned significant use of active distractions; while seven said they used passive distractions, such as watching TV or listening to music. Only three identified a favorite activity that they continued to participate in as much as possible. 10 of the 13 had missed significant amounts of school (two months or more), and in two cases, appeared to have abandoned the idea of ever returning. These children were more likely than those in the other two groups to report a sense of isolation from their peers.
Stressed children reported many types of coping behaviors and several made valiant attempts to continue functioning and to “fill the voids with happy things”, but they were heavily focused on the pain and the limitations it imposed on them. Although four relied primarily on rest and medication to cope, most described using a combination of behaviors: these included active and passive distractions, changing eating or other habits, crying or focusing on the pain. All 19 described many limitations, while only five talked about a favorite activity they continued to pursue. Nine had missed significant amounts of school, and five were home-schooled or attending only a few classes. Although several stated that they tried to ignore or forget about the pain, children in this group were the least likely to state that they realized focusing on the pain might heighten their perception and discomfort. They were however the most likely to describe worries that the pain would continue and would interfere with their plans for college or a career (see table 1).
Finally, all 45 children reported some stress in their lives, usually from school work, concerns about grades, and/or peer relationships. The children in the Stressed group were slightly more likely than those in the other two groups to identify multiple sources of stress, but the difference could not be considered significant in this subsample. This topic will be reexamined in the larger sample.
From our intensive review of the interview data, we concluded that simple listing of functions that the children could or could not perform, or found more or less difficult to do, was insufficient to explain the different levels of functioning. What emerged as a potentially more useful construct were the functioning strategies, combined cognitive and behavioral tools for dealing with pain, that were developed and used by the children. What may be most interesting about these strategies is that the children developed them independently: they had not been suggested by doctors, therapists, or parents, although it is likely that some of the children were imitating observed parent behavior. Three recurrent strategies were identified in this sample (individual children discussed below are identified by pseudonyms):
Ignoring the pain and trying to keep going was the most common strategy discussed by children in both the Adaptive and Stressed groups. The difference was that the Adaptive group better incorporated the power of distraction into their strategy and focused on things besides the pain, as shown by these examples:
“I'm keeping myself busy so I don't think about it,” explains Andi, who is 16. When her headaches first developed, she stopped several of her favorite activities, and then started them again, one by one. When she is swimming, dancing or playing water polo, “I'm not thinking about, oh, my head hurts.”
Thea is also 16; her love of music and singing impels her to go to school, even when she has headaches or abdominal pain. “I just know that if I go to school I get to sing, so I just try and focus on that…You can either let it control your life and just be in pain and not get anything done, or just be in pain and just move on, just work through it.” Thea stated that she differed in this respect from her mother, who tended to stop all activity and rest when in pain.
Children in the Stressed group reported that their attempts to continue activities failed to distract them from the pain. Instead, their efforts caused them not only physical, but also emotional stress, and led to further impairment:
Marsha, who is 17, also says, “I just try to live normally and get on with it”, but she is no longer playing basketball, which was her favorite activity. “I just kind of lost heart.” She has missed a lot of school, but has kept up with the work, though she finds reading hard when her head aches, and she has continued swimming. Much of the time, though, she copes by sleeping or watching TV. She thinks of herself as “a strong person”, but, having found “nothing takes the pain away completely,” she is “just kind of losing faith that I'll get better.”
Colin, also 17, has also been very active in sports and particularly loved water sports; for him, the ocean is “like Nirvana”. He stated that his headaches sometimes stopped him from doing his school work or his much valued marine maintenance job, but not usually; “I just do whatever I need to do and produce.” But trying to keep going when in pain makes him “real mean” and he “builds a wall” between himself and people he cares about; when he reaches this point, he retreats to “a quiet, dark room.”
The differences in these children's accounts suggest that while “getting on with things” is a necessary strategic approach to continuing to function with pain, it may not always be sufficient. Several children in the Adaptive group also identified two other strategies which were not described by children in the other two groups (but which appear similar to those discussed by Hunfeld and colleagues (11)): planning ahead and body awareness.
Cassie is 16 and involved in multiple activities at school, as well as using music and writing at home to take her mind off her fibromyalgia. She has found that “if I'm having fun, or if I'm doing something that's really important to me, then it's less severe and it's less a focus of my mind.” But she also realized that, although she can usually “push through” physically, it's not always possible mentally, and she will become “easily aggravated or really petulant with people.” Although she would prefer to be more spontaneous, therefore, she made a deliberate decision to organize her life to reduce stress and schedule more relaxing activities at the end of the day, when she would be tired. “I realized I had to like get an organizer and make sure I was really set and really organized and made sure that I didn't have anything really spontaneous to deal with, which kind of sucks.…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.”
Jade is 18 and uses music, reading, and painting successfully to distract herself from back pain: “I don't think the pain itself gets any different, but my awareness of it does.” She has missed little school – “I'd rather go to school and be completely distracted and preoccupied” – and says she is “in charge” of her life, but thinks of the pain as a limiting factor. “What are other things that I could really enjoy doing, but I won't even let myself want to do them?” After she began practicing yoga, she was able to cope more effectively, she thinks, in that the practice “really changed the way that I look at my body and approach the pain. It definitely made me more aware of my body…how I hold myself and how I stand,” and “much more observant of where I'm hurting and why.” This awareness helps her when she tries to go to sleep at night and when she has to sit for long periods of time, both potential pain triggers.
Quantitative analyses comparing the three groups were conducted as follows. Oneway ANOVAs and chi-square tests for continuous and categorical data, respectively, were used to examine group differences across the study measures, i.e., the CHQ, SASC, demographics (sex, age, race/ethnicity, and parent education), pain characteristics (pain intensity, pain duration, type of pain diagnosis, presence of multiple pain diagnoses (yes/no), and parent report of the part of the day the child experienced pain). In the event of a significant omnibus F in the ANOVAs, post-hoc tests were conducted to specify which groups differed significantly. To test for differences based on race/ethnicity, children were classified as Caucasian vs. non-Caucasian. For each between-group comparison, children who had missing data were excluded from the analysis. A standard probability level of p < .05 was used to evaluate the results.
The demographic characteristics of the three groups are presented in table 2. The three groups did not differ on any of these demographic characteristics. The pain characteristics for the three groups are displayed in table 3. The groups differed significantly on the part of the day the child experienced pain according to parent report (χ2 (8) = 17.0, p < .05). As shown in table 3, nearly 65% of children in the Stressed group were reported to experience pain the entire day (24 hours), compared to roughly 12% in the Adaptive group and less than 30% in the Passive group. There were no other group differences in pain characteristics.
On the CHQ, parent ratings of the child's global health differed significantly across the groups (F(2,35) = 3.48, p < .05). Post-hoc tests revealed that the Adaptive group (M = 65.6; SD = 32.2) scored higher than the Passive group (M = 28.2; SD = 36.0), indicating better perceived global health in the former group. This finding offers confirmation from the parent's perspective that the Adaptive group was perceived as functioning better than the Passive group. The Stressed group (M = 35.8; SD = 32.1) did not differ from the other two groups. There were no other group differences on the CHQ.
For the SASC total scores, there was a significant difference among the groups (F(2,34) = 3.48, p < .05). Post-hoc tests indicated that the Stressed group (M = 9.0; SD = 4.9) reported higher scores than the Passive group (M = 4.3; SD = 2.5), indicating higher overall social anxiety in the former compared to the latter group. The Adaptive group (M = 5.9; SD = 3.8) did not differ from the other two groups. Analysis comparing the SASC subscales revealed a significant group difference for the FNE subscale (F(2,34) = 4.74, p < .05) but no such difference for the SAD subscale. Post-hoc tests indicated that the Stressed group (M = 5.7; SD = 4.1) scored higher than the Passive group (M = 2.5; SD = 2.0) on the FNE subscale indicating higher fear of negative evaluation in the former group; the Adaptive group (M = 3.7; SD = 2.8) did not differ from the other two groups.
Qualitative analysis of interviews with 45 children prior to clinic intake identified three well-differentiated functioning patterns, which were designated as Adaptive, Stressed, and Passive. The qualitative analysis found clear behavioral and attitudinal differences between the groups in school attendance, activity participation, and coping behaviors. Baseline quantitative analysis (see tables 2 and and33 below) identified no significant differences between the three groups of children in demographic factors, or reported pain intensity or duration; however, the Stressed children reported higher overall social anxiety than the children in the Passive group, and they were the most likely of the three groups to report experiencing pain throughout the entire day (see table 3). As displayed in table 3, nearly 65% of Stressed children reported experiencing pain the entire day compared to approximately 12% of children in the Adaptive group and roughly 27% of children in the Passive group. Our quantitative analyses also revealed significant differences in parental perceptions of children's global health. The Adaptive group were rated by parents as being in better overall health compared the children in the Passive group; although parents of children in the Stressed group also rated their children's global health as being worse than that of the Adaptive group, this difference was not statistically significant.
Qualitative analyses further revealed that the three groups showed significant differences in self-descriptive themes independently derived from the interview data: the Adaptive group was more likely to be aware that focusing on pain increased the likelihood of pain perception; the Passive group was more likely to report a sense of isolation and difference from peers; and the Stressed group was more likely to report that they were worried about the impact of pain on their future.
Although all 45 children in this sample reported functioning limitations due to chronic pain, Adaptive children appeared to present with a more effective approach to functioning than the Stressed or Passive children. One possible explanation is that the Adaptive children have developed more effective functioning strategies. Although both Adaptive and Stressed children stated that they tried to “get on with things”, the Adaptive children were more able to use favorite activities as positive distractions from the pain. They also had developed additional strategies to help them function, of which two, “planning ahead” and “body awareness”, are discussed above.
It should not be minimized that pain intensity levels were comparable for all three groups, Adaptive, Passive, and Stressed, and that all of the children in our sample were sufficiently bothered by pain to seek care at a tertiary clinic specializing in pediatric pain. What this preliminary analysis indicates is that, for all three groups, the major impact of pain was that it limited their ability to do the things they wanted to do; and that each child had adapted an individual pattern of cognitions and behaviors that either promoted or impaired their ability to continue functioning. Although standard quantitative self-report measures did not reveal a great many differences associated with these patterns, qualitative analysis was able to identify and characterize three groups with distinct attitudinal and behavioral differences and to present a rich and complex description of the children's functioning.
At least one subset of the sample, the Adaptive group, had managed to “normalize” a life with chronic pain to some degree, in a manner similar to that described in children with other chronic diseases (22,23); but they remained conscious of it as a continuing source of distress and limitation, one that they had to continue to deal with in their efforts to remain normal. While it seems a reasonable inference that children in the Passive and Stressed groups might function better if they were more Adaptive, they would in all probability still have pain.
The questions that suggest themselves at this point, therefore, are, first, are these strategic approaches at baseline in any way associated with more positive pain and functioning outcomes following changes in treatment and management recommended at a tertiary clinic? Second, will some children become more Adaptive during treatment, and will they then show more positive outcomes than those who become, or remain, Passive or Stressed? Third, if further evidence supports the finding that a number of children are able to develop effective functioning strategies on their own, are there ways in which clinicians can promote better strategies in children who are functioning less well?
These questions will be considered in our further analysis of this sample of 45 children at six-month follow-up and of the full sample of 70 children who participated in this study between 2003 and 2006.
Cognitive-behavioral therapy is certainly one therapeutic option that may be appropriate here and has been shown to benefit children and adolescents with chronic pain (24,25). However, this option is not available, affordable, or acceptable to every family. Inasmuch as some children demonstrate individual patterns of skills that have helped them cope with pain, the possibility of developing and promoting these skills in other children should be explored.
Further research along these lines is also merited, particularly longitudinal studies which follow children with chronic pain through college and young adulthood. The long-term impact of pain and associated functioning impairment is not known. Nor is it clear that functioning skills developed in adolescence are transferable to later life. Hunfeld and colleagues raise the question that the strategic approaches reported in their study (11) may only work well for adolescents, who are protected from the daily responsibilities and stresses of having to make a living, manage their own homes, and so forth, faced by adults. Better answers to all these questions are needed in order to help the many young people whose lives are diminished by 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 suggestions, advice, and help of Ignasi Clemente, the administrative assistance of Edward Curnen, and the interviewing, coding, and transcription work of Mara Buchbinder, Arianne Gaetano, Reynal Guillen, Ryan Hodgkinson, Marian Katz, Tanya Stivers, and Suzanne Walter are gratefully acknowledged.