The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis

OBJECTIVES: To investigate the relationship between health-related quality of life (HRQL), experience of pain and pain coping strategies in children with juvenile idiopathic arthritis (JIA). To compare reports describing these variables obtained from children and their parents. METHODS: Participants were 59 children aged 8 to 18 yr with JIA and their parents. Parents and children completed the PedsQL generic core scales and arthritis module, the visual analogue scale of the Varni-Thompson Pediatric Pain Questionnaire, and the Waldron/Varni Pediatric Pain Coping Inventory. Parents rated children's functional disability using the Childhood Health Assessment Questionnaire. RESULTS: Parents reported significantly lower scores (indicating worse HRQL) than children on five of the eight PedsQL scales rating children's HRQL. Parents and children reported a significant negative relationship between pain levels and the PedsQL scores assessing children's physical, emotional and social functioning. They also reported a significant negative relationship between scores on several pain coping scales and scores on the PedsQL scales. However, the pattern of these relationships varied for reports from parents and children. CONCLUSIONS: Pain intensity and pain coping strategies have a significant and independent relationship with several domains that comprise the HRQL of children with JIA. However, parents and children have differing perceptions of the nature of these relationships. The differences emphasize the importance of clinicians obtaining information about children's HRQL, pain levels and pain coping strategies from both parents and children.     

Efficacy of custom foot orthotics in improving pain and functional status in children with juvenile idiopathic arthritis: a randomized trial

OBJECTIVE:. To compare the clinical efficacy of custom foot orthotics, prefabricated "off-the-shelf" shoe inserts, and supportive athletic shoes worn alone, on reducing pain and improving function for children with juvenile idiopathic arthritis (JIA). METHODS: Children with JIA and foot pain (n = 40) were randomized to one of 3 groups receiving: (1) custom-made semirigid foot orthotics with shock absorbing posts (n = 15), (2) off-the-shelf flat neoprene shoe inserts (n = 12), or (3) supportive athletic shoes with a medial longitudinal arch support and shock absorbing soles worn alone (n = 13). Foot pain and functional limitations were measured using the Pediatric Pain Questionnaire-visual analog scale (VAS), Timed Walking, Foot Function Index (FFI), and the Physical Functioning Subscale of the Pediatric Quality of Life Inventory (PedsQL). Measures were administered by personnel blinded to group status at baseline (before wearing the assigned intervention) and at 3 months' followup. RESULTS: Children in the orthotics group showed significantly greater improvements in overall pain (p = 0.009), speed of ambulation (p = 0.013), activity limitations (p = 0.002), foot pain (p = 0.019), and level of disability (p = 0.024) when compared with the other 2 groups. Both children and parents in the orthotics group reported clinically meaningful improvement in child health-related quality of life, although the group by time interaction did not show statistical significance. Except for a reduction in pain for supportive athletic shoes (paired t test, p = 0.011), neither the off-the-shelf shoe inserts nor the supportive athletic shoes worn alone showed significant effect on any of the evaluation measures. CONCLUSION: In children with JIA, custom-made semirigid foot orthotics with shock-absorbing posts significantly improve pain, speed of ambulation, and self-rated activity and functional ability levels compared with prefabricated off-the-shelf shoe inserts or supportive athletic shoes worn alone.     

Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis

OBJECTIVE: To determine the level of agreement between parents and clinicians in rating dysfunction in children with juvenile idiopathic arthritis (JIA). METHODS: A parent of each patient completed the Italian version of the Childhood Health Assessment Questionnaire (CHAQ). Subsequently, an examiner assessed, in a specially equipped room, the child's performance of tasks as described by the CHAQ. Demographic and clinical variables were recorded for all patients. RESULTS: Seventy consecutive JIA patients and their parents were included. The mean proxy-reported and observed CHAQ score was 0.64+/-0.53 and 0.47+/-0.62 respectively, the difference ranging from -1.75 to 1.5. There were 30 cases (43%) of agreement (difference < or =0.25 CHAQ units) between the parent's and clinician's ratings, whereas in 40 cases (57%) there was discordance (difference >0.25 CHAQ units). In 30 cases the parent rated the child's functional ability as worse than that observed by the clinician (i.e. the parent underestimated the child's function), whereas in 10 cases the parent rated the child's functional ability as better than that observed by the clinician (i.e. overestimated the child's function). Multivariate regression analysis showed that children's functional ability was overestimated by parents with increasing erythrocyte sedimentation rate and global articular severity score and underestimated with increasing level of pain. Among the functional areas of the CHAQ, the level of agreement was poorest in the areas of eating and hygiene and was best for activities. CONCLUSIONS: Discordance between proxy-reported and observed functional ability was frequent in our patients with JIA. The children's functional ability was overestimated by parents as the severity of arthritis increased and underestimated as the level of pain increased.     

Cross-cultural adaptation and validation of the Japanese version of the Childhood Health Assessment Questionnaire (CHAQ)

To assess cross-cultural adaptation, and to validate the parent's version of a health-related quality-of-life instrument, the Childhood Health Assessment Questionnaire (CHAQ) was investigated after its translation into Japanese. A total of 132 subjects were enrolled: 63 patients with juvenile idiopathic arthritis (JIA) (34 systemic and 29 polyarticular) and 69 healthy children. The CHAQ distinguished clinically between healthy subjects and the two JIA subtypes of patients. The average disability index (DI) scores for systemic JIA (sJIA) and polyarticular JIA (pJIA) patients and healthy subjects were 1.5, 1.2, and 0.0, respectively. All variables in the questionnaire were shown to be significant (P < 0.001). Patients with pJIA showed better correlation than those with sJIA. Significant correlation was seen in the polyarticular group with CRP, ESR, parents' VAS, the number of joints with pain, and the number of active joints. However, there was even a negative correlation between DI and parent's assessment of overall well-being for the sJIA group. The Japanese version of the CHAQ was a reliable and valid tool for the functional assessment of children with pJIA. Functional ability, as assessed by the CHAQ, may not be the main consideration of sJIA patients' parents when assessing their child's status.     

Parental perceptions of overweight in 3-5 y olds

OBJECTIVE: To assess the accuracy of parents' perceptions of their 3 to 5 y old children's weight status in a large UK sample. METHOD: Parental perception and concern about child weight, demographic variables, and children's height and weight were obtained for 564 parent-child dyads. RESULTS: Only 1.9% of parents of overweight children and 17.1% of parents of obese children described their child as overweight. The odds of parents perceiving the child as overweight were increased for overweight (2.7; 95% CI 0.4, 16.5) and obese (28.5; 7.1, 115.4) compared with normal weight children, but were not associated with parental weight or with any demographic factors. Although few parents perceived their overweight children as overweight, more (66.2%) expressed concern about their overweight child becoming overweight in the future. Odds of concern were progressively higher for overweight (2.5; 1.6, 3.9) and obese children (4.6; 2.2, 9.7), and were also higher for parents who were themselves overweight (1.9; 1.2, 2.9) or obese (2.5; 1.3, 4.8). CONCLUSION: These findings suggest that parents of 3-5 y olds show poor awareness of their child's current weight status. Reframing discussions in terms of preventing future overweight may be an effective way to engage parents.     

Physicians' and parents' ratings of inactive disease are frequently discordant in juvenile idiopathic arthritis

OBJECTIVE: To investigate discrepancies between physicians' and parents' ratings of inactive disease in children with juvenile idiopathic arthritis (JIA) and the determinants of the discrepancy. METHODS: Study data were obtained from the clinical database generated at the study unit. Each patient visit included a standardized assessment of JIA outcome measures. One visit for each patient was selected for analysis. Three definitions of inactive disease were applied to the data: a physician-based definition (physician global assessment = 0); a parent-based definition (parent global assessment = 0); and a formal definition, based on fulfillment of newly developed criteria for inactive disease in JIA. RESULTS: Of 1237 visits made by 537 patients that included both physician and parent global assessments, 265 fulfilled the physician-based definition and/or the parent-based definition of inactive disease. Concordance between physicians and parents in rating the disease as inactive was seen in 40% of the visits, whereas in 60% of visits the 2 assessments were discordant. Parents tended to disagree with physicians in rating the disease as inactive if the child had pain or functional impairment, whereas physicians tended to disagree with parents in the presence of active joint symptoms. Only 2/3 of the 79 visits that fulfilled the formal definition of inactive disease also met the parent-based definition of inactive disease. CONCLUSION: We found frequent discordance between physicians' and parents' ratings of inactive disease in children with JIA, which suggests that the parent's rating of a child's disease activity should be considered for inclusion in the definition of clinical remission for JIA.     

Pain experience and pain coping strategies in children with juvenile idiopathic arthritis

OBJECTIVE: To compare reactions to cold pressor pain and pain coping strategies of patients with juvenile idiopathic arthritis (JIA), healthy children, and their parents. METHODS: We studied 16 children with JIA and one of their parents and 14 healthy children and one of their parents. Patients with JIA were selected from the patient population by fulfilling criteria for inclusion in a "high pain" group (n = 7) of patients with modest clinical arthritis activity, but who presented daily reports of pain in connection with everyday activities, and a "low pain" group (n = 9) who presented significant clinical arthritis activity, but who had only a few complaints of pain related to everyday activities. Dependent variables included pain threshold, discomfort, intensity and tolerance to cold pressor pain, and pain coping strategies. RESULTS: Patients with JIA exhibited significantly lower mean pain tolerance than healthy children. Disease duration correlated with both experimental and clinical pain measures, and JIA patients used significantly more Behavioral Distraction than healthy children. Correlations were found between children's and parents' use of Approach and Distraction related coping strategies. Correlations were also found for the coping strategy of Catastrophizing in the JIA patient group. For experimental pain coping strategies, a significant correlation was found between the JIA patients' and their parents' use of Distraction. For the JIA patients Positive Self-statements and Behavioral Distraction were inversely correlated with the clinical pain measures. In both children and parents the experimental pain coping strategies of Catastrophizing and Distraction were associated with the experimental pain response measures, and low pain JIA patients tended to use more Distraction pain coping strategies than high pain patients. CONCLUSION: The results indicate that JIA patients may differ from healthy children with regard to their responses to experimental pain as well as to their use of pain coping strategies. Pain coping strategies of JIA patients were associated with pain coping strategies of their parents, and use of pain coping strategies was associated with both experimental and clinical pain experience.     

Associates of school impairment in Egyptian patients with juvenile idiopathic arthritis: Sharkia Governorate

The aim of this study was to investigate the factors associated with school absenteeism and poor school functioning in Egyptian children and adolescents with juvenile idiopathic arthritis (JIA). We studied 52 consecutive patients of JIA with age ≥7 years and duration of disease ≥1 year. All of the patients underwent assessment of socioeconomic and demographic characteristics, disease activity (JIDAS-27), functional ability (CHAQ), depressive symptoms (CDI score), and school functioning (PedsQL? 4.0). Multivariate modeling was applied to determine the factors that associated with school absenteeism and poor school functioning. A total of 69 % of the sample missed 3 weeks or more of school during past academic year. The mean percentage of missed school days was 12.5 % (equivalent to 25 absent days). A total of 46 % of the patients had poor school functioning (school functioning subscale score of HRQOL ≥1 SD below the mean of healthy children). In multiple regression analyses, high CHAQ scores, disease activity, and depressive symptoms were independent predictors for both of school absenteeism and of poor school functioning. However, living in rural regions was independently associated only with high school absenteeism in patients with JIA. Disease activity, functional disability, and high depressive symptoms are predictors of school absenteeism and poor school functioning. These findings underscore the critical need for treatment strategies that have the ability to better control disease activity, to minimize functional disability, and depressive symptoms. More attention should be given to JIA patients who live in rural regions.     

Are parents able to rate the symptoms and quality of life of their offspring with IBD?

The aim of this study was to investigate the degree of agreement between parents and their offspring with inflammatory bowel disease for the presence of symptoms and the assessment of health-related quality of life (HRQOL). Factors influencing parent-child agreement were studied. Eighty-three Children and 81 parents separately filled out a five-item symptom card and a validated generic HRQOL instrument, which assesses seven domains of HRQOL, using the child and parent form. The parent also filled out the GHQ-30, an instrument assessing nonpsychotic psychiatric disorder in the parent, and an item on marital status. Intraclass correlation coefficients and paired student t-test were used to assess the level of agreement between raters. On one domain, parents reported their children as having a worse QOL than did the children themselves (social functioning). The parents were adequate raters of objective components of their child's HRQOL (overall correlation coefficient: 0.88). However, on more subjective components, the coefficient dropped to 0.62. In 82% of the cases did parents correctly classify their child into the disease activity category the child classified him- or herself. In conclusion, agreement between parents and offspring is good for the child's symptoms, but for HRQOL assessment only when it concerns objective states.     

Increased somatic complaints and health-care utilization in children: effects of parent IBS status and parent response to gastrointestinal symptoms

OBJECTIVES: Irritable bowel syndrome (IBS) runs in families. The aims of this study were (i) to exclude biased perception by a mother with irritable bowel as the explanation for increased gastrointestinal (GI) symptoms in their children, (ii) to determine whether non-GI as well as GI symptoms run in families, and (iii) to determine whether parent IBS status and solicitous responses to illness exert independent effects on children's symptom reports, medical clinic visits, and school absences. METHODS: Two hundred and eight mothers with irritable bowel and their 296 children (cases: average age 11.9 yr; 48.6% male) and 241 nonirritable bowel mothers and their 335 children (controls: 11.8 yr; 49.0% male) were interviewed. Other factors assessed were stress, mother's and child's psychological symptoms, child's perceived competence, pain coping style, age, and sex. Children were interviewed apart from their parents. RESULTS: Case children independently reported more frequent stomach aches (F(591) = 9.22; p= 0.0025) and non-GI symptoms (F(562) = 21.03; p < 0.001) than control children. Case children also had more school absences (F(625) = 26.53; p < 0.0001), physician visits for GI symptoms (F(602) = 8.09; p= 0.005), and non-GI clinic visits (F(602) = 27.92; p < 0.001) than control children. Children whose mothers made solicitous responses to illness complaints independently reported more severe stomach aches (F(590) = 11.42; p < 0.001), and they also had more school absences for stomach aches (F(625) = 5.33; p < 0.05), but solicitous behavior did not significantly impact non-GI symptom reporting, clinic visits, or school absences. Differences between cases and controls remained significant after adjusting for potential moderators. CONCLUSIONS: (i) Frequent GI complaints in children whose mothers have irritable bowel are not explained by the mother's biased perceptions; (ii) children of mothers with irritable bowel have more non-GI as well as GI symptoms, disability days, and clinical visits; (iii) and parent IBS status and solicitous responses to illness have independent effects on the child's symptom complaints.     

Primary juvenile fibromyalgia. Psychological adjustment,family functioning,coping, and functional disability

Objectives. 1) To determine the importance of psychological adjustment and family functioning in primary juvenile fibromyalgia by assessing these factors in children with fibromyalgia and in their parents, compared with children with juvenile rheumatoid arthritis (JRA) and with pain-free control children and their parents. 2) To examine which of these factors predict functional disability. Methods. Fifteen children in each of the 3 study groups, and their parents, completed self-report questionnaires and pain diaries. A medical evaluation of each child was performed, including assessment of tender points by palpation and by dolorimetry. Results. All children in the fibromyalgia group met the Yunus and Masi criteria for fibromyalgia, and 11 met the American College of Rheumatology criteria. There were almost no significant group differences in the children's or parents' psychological adjustment, ratings of family functioning, or coping strategies. Significant group differences in functional disability, pain, fatigue, tender point threshold, and control point tolerance were found. A number of the psychological adjustment, pain, fatigue, and coping variables were significantly associated with functional disability. Conclusion. The notion that fibromyalgia is a psychogenic condition is not supported by these results. Fibromyalgia is associated with disability of a magnitude comparable to that of other chronic pain conditions. Disability among children with fibromyalgia or JRA is a function of the children's psychological adjustment and physical state, and of the parents' physical state and method of coping with pain.     

Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis

OBJECTIVE: To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents. METHODS: The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method. RESULTS: Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being). CONCLUSION: There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.     

Parents' preferences for drug treatments in juvenile idiopathic arthritis: A discrete choice experiment

Objective

To examine parents' preferences for drug treatments and health outcomes in juvenile idiopathic arthritis (JIA) and identify demographic and health‐related factors that significantly impact choice.

Methods

A discrete choice experiment was conducted with 105 parents of children with JIA who were cared for by a rheumatologist at The Hospital for Sick Children in Canada. Attributes evaluated included “drug treatment,” “child reported pain from arthritis,” “participation in daily activities,” “side effects,” “days missed from school,” and “cost to you.” Multinomial logit regression was used to estimate the relative importance of each attribute level and interaction term.

Results

Parents made tradeoffs between characteristics of the drug treatments and health outcomes. “Participation in daily activities” was the most important attribute, followed by “child reported pain from arthritis” and “cost to you.” Parents of children with longer disease durations had stronger preferences for improved participation in daily activities, whereas parents of older JIA patients had stronger preferences for improved control of pain.

Conclusion

Parents of children with JIA demonstrated strong preferences for treatments that reduce pain and improve daily functioning regardless of the associated side effects, level of responsibility required for drug administration, and days missed from school. Parents of children with longer disease durations and those who had been prescribed aggressive therapies had a greater preference for treatment effectiveness. These findings support the need for considering parental preferences in decisions regarding the choice of treatment for JIA.     

What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients

We investigated what it means to patients with juvenile idiopathic arthritis (JIA) to grow up with this disease. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18-30 years. Interviews were tape recorded and transcribed verbatim. Data were analysed using procedures inherent to the grounded theory approach. Five main themes emerged: physical impact, medication, relationships and family, friends, and perceptions of their future. The physical impact of JIA involved functional limitations, pain, and fatigue. Taking medication properly was difficult; side effects were seen as a problem. With regard to relationships and family, JIA affected the subjects in their roles as family members and affected intimate relationships, pregnancy, and raising children. Indeed, the majority of the patients were afraid to become pregnant or to have children. Most patients found friends who understand their situation and who are a big support. Some patients were afraid of what the future would bring. A better understanding of the psychosocial needs of adolescents with JIA and getting insight into what it means to grow up with this condition will assist healthcare professionals to target interventions that are timely and effective in transitional care to adulthood.     

Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the child health questionnaire

OBJECTIVE: To assess the determinants and responsiveness of the Norwegian version of the Child Health Questionnaire (CHQ) in patients with early juvenile idiopathic arthritis (JIA) and to compare health status in patients and controls. METHODS: A total of 116 children (median age 8.4 yrs) with JIA and < 2.5 years of disease duration (median 11.0 mo) were examined by a pediatric rheumatologist and reassessed after a median of 10.0 months. Physical and psychosocial health were assessed by means of the CHQ, which provides summary scores for physical and psychosocial health, the Childhood Health Assessment Questionnaire (CHAQ), and the Child Behavior Checklist (CBCL, n = 32). Matched controls (n = 116), randomly selected from the general population, completed the CHQ at baseline. RESULTS: The patients with JIA had poorer physical health and slightly impaired psychosocial health compared with the controls [41.2 +/- 13.6 vs 55.2 +/- 7.3 (p < 0.001) and 51.0 +/- 7.5 vs 54.1 +/- 5.7 (p = 0.002), respectively]. The most important determinants of the CHQ physical summary score were the child's pain, morning stiffness, the CHAQ disability index, erythrocyte sedimentation rate (ESR), overall well-being, and physician's global assessment of disease activity. The psychosocial summary score correlated with the CBCL level of internalizing, externalizing, and total behavior problems. The standardized response mean for the physical summary score was large (0.96) for those who improved, and moderate (-0.60) for those who became worse. CONCLUSION: The CHQ discriminated between patients with early JIA and controls. The most important determinants of the CHQ physical summary score were the child's pain, morning stiffness, CHAQ, ESR, overall well-being, and physician's global assessment of disease activity. The CHQ was sensitive to clinical changes in children with JIA.     

Feasibility and construct validity of the parent willingness-to-pay technique for children with juvenile idiopathic arthritis

OBJECTIVE: To assess the feasibility and construct validity of the willingness-to-pay (WTP) technique for measuring health care preferences in families of children with juvenile idiopathic arthritis (JIA). METHODS: Parents were asked to estimate the monthly US dollar amount they would be willing to pay to obtain for their child the following hypothetical drugs: ARTHRO, which guarantees complete clinical response; and NO-STOM-ACHE, a drug that eliminates gastrointestinal (GI) symptoms. A yes/no question was used with random assignment of the starting bids. Parents who agreed to pay the starting bid were then asked whether they would be willing to pay 200% and then 400% of this initial bid. Socioeconomic data and information on medications, disease activity, patient physical function, wellbeing, and health-related quality of life (HRQOL) were obtained. RESULTS: Sixty-two families of children with JIA were interviewed. GI symptoms were present in 54%, and 53% of the children had joints with active arthritis or limited range of motion. Four parents (7%) were unwilling to pay anything for any of the studied medications. The mean amount (median; mean percentage of available family income) families were willing to pay was $395 ($300; 15%) for ARTHRO and $109 ($80; 4%) for NO-STOM-ACHE. Correlation and regression analysis supported that, adjusted for the available family income, the WTP for ARTHRO was associated with disease activity, pain, and the HRQOL of the patients. After correction for the starting bids and the available family income, the WTP for NO-STOM-ACHE was associated with the patient's HRQOL, pain, and the amount of GI discomfort. CONCLUSION: The WTP technique is feasible and has construct validity for measuring health care preferences for children with JIA. Relatively large WTP estimates support a possible important negative impact of the disease on families of children with JIA.     

The mediating role of health perceptions in the relation between physical and mental health: a study of older residents in assisted living facilities

OBJECTIVE: Responding to the increased need for research on older residents in assisted living facilities (ALFs), this study assessed the connections between physical and mental health among 150 older residents in ALF settings. METHOD: The major focus of the study was to explore whether individuals' subjective perceptions of their own health mediate the associations between health-related variables (chronic conditions and functional disability) and depressive symptoms. RESULTS: The analyses showed that the adverse effects of chronic conditions and functional disability on depressive symptoms were not only direct but also indirect through negative health perceptions. DISCUSSION: The findings that health perceptions serve as an intervening step between physical and mental health provide important implications for promotion of mental well-being among older residents in ALFs. In addition to disease/disability prevention and health promotion efforts, attention should be paid to ways to enhance older individuals' positive beliefs and attitudes toward their own health and to promote healthful behaviors.     

When parents matter to their adult children: filial reliance associated with parents' depressive symptoms

A neglected topic in aging depression research is the potential role of the parent-adult child relationship. In this study we examined whether adult children's reports of having relied upon parents for instrumental and expressive support are associated with parents' depressive symptoms. The sample included 304 parents (aged 50-72 years), matched to a randomly selected adult offspring, from the University of Southern California Longitudinal Study of Generations. We measured parents' depressive symptoms by using the Center for Epidemiologic Studies Depression Scale at baseline and 3 and 6 years later. The final longitudinal analysis showed that, when we adjusted for relevant variables including age, gender, income, self-rated health, and child's depressive symptoms, the adult child's reliance on instrumental support was associated with fewer parental depressive symptoms (p =.036). Expressive support did not show the same pattern. Thus, adult children's reliance on instrumental support might contribute to their parents' mental health.     

Illness trajectories in Mexican children with juvenile idiopathic arthritis and their parents

BACKGROUND: We hypothesize that the qualitative approach of socio-cultural aspects in children with juvenile idiopathic arthritis (JIA) and their parents would improve the understanding of their illness. OBJECTIVE: To explain the phenomenon of experiencing JIA within a specific cultural context. METHODS: The theoretical position of this research was based on the substantive theories of suffering, explanatory models and illness experience. Its design was that of qualitative field, and its analysis followed the interpretative grounded theory methodology. Data were collected by in-depth interviews and notes; tape recordings were transcribed verbatim, read and imported into the ATLAS/ti 4.2 software. Data conceptualization, categorization and interpretation were based on the constant comparison method. RESULTS: A total of 16 adults and six children from 10 families were interviewed. 'Pilgrimage' (metaphorically referred by some of the parents) was a major code in the study that reflected the religious reference to the trajectory of pain, faith and hope. For children, pilgrimage was conformed by immediate concepts; for parents, by historical and immediate experiences influenced by JIA subtype. Pilgrimage was consistent with the model of the illness trajectory theory, which conceptually relates to the idea that the course of chronic diseases is variable and modifiable throughout time. CONCLUSION: The qualitative approach of JIA provides wide and deep information on the perception that children and parents have about the disease. The illness trajectory theory corresponds to pilgrimage, the theoretical model for JIA in this study.