Daily life participation in childhood chronic disease: a qualitative study.

OBJECTIVE: Opportunities to participate in daily life have improved considerably for children with chronic disease. Nevertheless, they still face challenges associated with their ever-present illness affecting every aspect of their lives. To best help these children, we aimed to assess the child's own perspective on participation and the main considerations that affect participation in a stable phase of disease. METHODS: Qualitative study design was applied. Semistructured, indepth interviews were conducted and analysed by a general inductive approach using constant comparison, coding and categorisation. Children 8-18 years old with a chronic disease were recruited from a cohort study involving cystic fibrosis, autoimmune disease and post-treatment paediatric cancer. RESULTS: 31 of the 56 (55%) invited patients participated. From the perspective of children with chronic disease, participation is considered more than merely engaging in activities; rather, they view having a sense of belonging, the ability to affect social interactions and the capacity to keep up with peers as key elements of full participation. Some children typically placed a higher priority on participation, whereas other children typically placed a higher priority on their current and/or future needs, both weighing the costs and benefits of their choices and using disclosure as a strategy. CONCLUSIONS: Enabling full participation from the child's perspective will help realise patient-centred care, ultimately helping children self-manage their participation. Caregivers can stimulate this participation by evaluating with children how to achieve a sense of belonging, active involvement and a role within a peer group. This requires active collaboration between children, healthcare providers and caregivers.

Healthy play, better coping: The importance of play for the development of children in health and disease.

Play is of vital importance for the healthy development of children. From a developmental perspective, play offers ample physical, emotional, cognitive, and social benefits. It allows children and adolescents to develop motor skills, experiment with their (social) behavioural repertoire, simulate alternative scenarios, and address the various positive and negative consequences of their behaviour in a safe and engaging context. Children with a chronic or life-threatening disease may face obstacles that negatively impact play and play development, possibly impeding developmental milestones, beyond the actual illness itself. Currently, there is limited understanding of the impact of (1) aberrant or suppressed play and (2) play-related interventions on the development of chronic diseased children. We argue that stimulating play behaviour enhances the adaptability of a child to a (chronic) stressful condition and promotes cognitive, social, emotional and psychomotor functioning, thereby strengthening the basis for their future health. Systematic play research will help to develop interventions for young patients, to better cope with the negative consequences of their illness and stimulate healthy development.

Are the time trends in adolescent psychosomatic problems related to functional impairment in daily life? A 23-year study among 20,000 15-16year olds in Sweden.

OBJECTIVE: Worldwide there are frequent reports on increasing psychosomatic problems, anxiety, emotional distress, conduct problems, and depression among adolescents. Recently, it was contended that secular studies on such aspects of adolescent mental health can only be evaluated adequately when data on symptom prevalence are analyzed together with data on functional impairment. Still, this has not yet been done in epidemiological time-trend studies on any aspect of adolescent mental health. Therefore, this study aims to investigate if, and to what extent, changes in adolescents' symptoms of psychosomatic problems are affected when data on functional impairment are taken into account simultaneously. METHODS: A repeated cross-sectional population study relating self-reported symptoms of psychosomatic problems to functional impairment; covering the time-period 1988-2011 and including 19.823 adolescents 15-16years old in eight cohorts in one geographically defined population (Värmland, Sweden). RESULTS: The proportion of adolescents with psychosomatic problems had increased significantly from 1988 to 2005/2008. In all cohorts the proportion of girls with psychosomatic problems was significantly higher than the proportion of boys reporting symptoms. Over the same period, there was a corresponding significant increase of the proportion of participants with symptoms of psychosomatic problems in combination with functional impairment. Adding functional impairment to the measure of psychosomatic problems decreased the prevalence rates, while the shapes of the trend-curves stayed congruent in form. CONCLUSION: The long-term pattern of increasing psychosomatic problems among adolescents remains evident, even when taking functional impairment data into account. Previously observed trends of a deteriorating adolescent mental health are thus consistent with this study.

The Self beyond Somatic Symptoms: A Narrative Approach to Self-Experience in Adolescent Chronic Fatigue Syndrome.

BACKGROUND: The self and self-experience are often assumed to play an important role in adolescent patients presenting with severe somatic symptoms and bodily distress. Nonetheless, most empirical work on this subject is confined to studies of personality and patients' experience of negative emotionality. This study aims to move beyond mere descriptions of symptoms, traits and distress, and consequently adopts a narrative approach to self-experience in adolescent chronic fatigue syndrome (CFS). SAMPLING AND METHODS: The self-confrontation method (SCM) is a well-validated instrument to systematically analyze narrative self-experience. The SCM was used to study 42 adolescents with CFS, compared to 36 adolescents with juvenile idiopathic arthritis (JIA) and 25 matched healthy controls. The Child Health Questionnaire (CHQ-CF87) was used to assess mental health, self-esteem, and physical and psychosocial functioning. RESULTS: Both patient groups reported significantly less positive self-experience of autonomy and success compared to healthy controls. Furthermore, patients with CFS described significantly more negative self-experience of powerlessness, isolation and unfulfilled longing. In the CHQ-CF87, both patient groups scored significantly lower on physical functioning than controls. Adolescents with CFS also scored significantly lower on mental health and self-esteem. CONCLUSIONS: Adolescent CFS entails a serious threat to the self, which might be inherent to the condition. Not only are patients more impaired in mental health, self-esteem, and physical and psychosocial functioning than patients with JIA, they also suffer from a distinct combination of high negative and low positive self-experience. These findings stress the need for strategies that empower patients towards a 'management of the self'.

Somatic symptoms and psychological concerns in a general adolescent population: Exploring the relevance of DSM-5 somatic symptom disorder.

OBJECTIVE: DSM-5 somatic symptom disorder (SSD) constitutes a major change for psychosomatic medicine and psychiatry, as well as for epidemiological research in these fields. This study investigates somatic symptoms and psychological concerns among adolescents in order to systematically explore the relevance of SSD for general adolescent populations. METHODS: A cross-sectional population-based design, with a symptoms-based strategy and a symptom-and-psychological-concern-based strategy, was used to estimate the prevalence of somatic symptoms and psychological concerns in a general adolescent population (n=2476, mean age=16years, 49% boys, 51% girls). Somatic symptoms and psychological concerns in relation to gender, and self-reported medical and psychiatric conditions were investigated. The association between somatic symptoms, psychological concerns, and functional impairment in school-, family-, peer- and physical activities was studied. RESULTS: Reporting 3+ persistent distressing somatic symptoms was significantly more common than reporting one or more persistent distressing somatic symptom(s) combined with serious psychological concern. The prevalence of such complaints was significantly higher in girls. The proportion of medical and psychiatric conditions was highest in the group reporting 3+ persistent distressing somatic symptoms combined with serious psychological concern. Belonging to this group most significantly increased odds ratios for functional impairment. CONCLUSION: For large-scale studies on SSD, results suggest the use of measures based on multiple somatic items in combination with psychological concerns, and a methodologically sound standardized measure of functional impairment. To further enhance clinical decision-making, the relation of symptoms to functional impairment, and the substantial overlap of SSD with medical and psychiatric conditions during adolescence should be addressed.

The controversy over pediatric bariatric surgery: an explorative study on attitudes and normative beliefs of specialists, parents, and adolescents with obesity.

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity-whether it should be considered primarily a medical condition or more a psychosocial problem-seem to affect the specialists' normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents' feelings regarding both being able to influence their child's health and their child being able to control their own condition, and the adolescents' sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views-e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure-play an important role in the acceptability of bariatric surgery for childhood obesity.

Health and identity: Self-positioning in adolescent chronic fatigue syndrome and juvenile idiopathic arthritis.

The aim of this study is to gain more insight into basic aspects of identity, in relation to adolescent chronic fatigue syndrome (CFS) and juvenile idiopathic arthritis (JIA). In dialogical self theory, identity is regarded as incorporating multiple self-positions, such as 'I as tired', 'I as pessimistic', or 'I as decisive'. Physical and psychosocial impairment might alter the organization of these self-positions. The Personal Position Repertoire procedure, a quantitative method to analyse the prominence of self-positions, the Child Health Questionnaire, assessing health-related functioning, and the Checklist Individual Strength, measuring fatigue, were completed by 42 adolescents with CFS, 37 adolescents with JIA and 23 healthy teenagers. Adolescents with JIA report impaired physical functioning and general health. However, they position themselves very similar to healthy teenagers - i.e. as strong and healthy. While this self-positioning approach might be adequate and sustainable in adolescence, it could prove too strenuous to maintain throughout adult life. Adolescents with CFS, besides indicating severe physical difficulties, also report more psychosocial problems. They position themselves as significantly less strong and more unwell. With this emphasis on positions relating to their illness, there seems to be little room left for stronger positions. It is regarded of clinical importance to address these issues in this crucial developmental period.

Self-investigation in adolescent chronic fatigue syndrome: narrative changes and health improvement.

OBJECTIVE: A small-scale intervention study into narrative self-investigation in adolescent chronic fatigue syndrome (CFS). METHOD: The self-confrontation method (SCM) is an instrument to assess and change personal life stories. Forty-two adolescents diagnosed with CFS were included and randomly assigned to either 6 or 12 sessions with the SCM. Twenty-five healthy adolescents were assigned to 6 sessions. Outcome was measured directly after the self-investigation procedure at 4 months. Follow-up measurements were made 10 months later. The Checklist Individual Strength and the Child Health Questionnaire were used to measure changes in fatigue, physical and psychosocial functioning. RESULTS: Self-investigation resulted in significant changes in participants' narratives. Moreover, after self-investigation there was a significant improvement in fatigue, physical and psychosocial functioning for the adolescents with CFS. The patients who completed 12 sessions improved most. At follow-up, the positive effects were maintained. CONCLUSION: Self-investigation enables a move beyond the symptoms of CFS in an individualized, patient centered way. Narrative transformation seems to contribute to improved physical and psychosocial outcome in adolescent CFS. PRACTICE IMPLICATIONS: The SCM allows adolescents to discover (for themselves) factors that might cause or perpetuate their fatigue. The results suggest that self-investigation is a useful instrument in the management of adolescent CFS.

Adolescent chronic fatigue syndrome: a follow-up study.

OBJECTIVE: To describe the symptomatic and educational long-term outcomes, health care use, and risk factors of nonrecovery in adolescent chronic fatigue syndrome (CFS). DESIGN: Follow-up study. SETTING: Academic pediatric hospital. PARTICIPANTS: Sixty adolescents with CFS. INTERVENTIONS: Regular care. OUTCOME MEASURES: The Checklist Individual Strength, Child Health Questionnaire, and a general questionnaire regarding further symptoms, school attendance, work attendance, and treatment. RESULTS: Complete measurements were returned for 54 adolescents (90%). At initial assessment, their mean (SD) age was 16.0 (1.5) years and 20.4% were male. The mean follow-up duration was 2.2 years. At follow-up, the mean (SD) age was 18.2 (1.5) years; 28 adolescents (51.9%) had nearly complete improvement of symptoms but 26 (48.1%) did not experience improvement. Adolescents who attended school (n = 41) had missed an average of 33% of classes during the last month. The rest (n = 13) had worked an average of 38.7% of a full-time job during the last month. A total of 66.7% of subjects were treated by a physiotherapist, 38.9% were clinically treated in rehabilitation, 48.1% had received psychological support, and 53.7% had used alternative treatment. CONCLUSIONS: About half of the adolescents had recovered from CFS at follow-up. The other half was still severely fatigued and physically impaired. Health care use had been high, and school and work attendance were low. Older age at inclusion was a risk factor, and pain, poor mental health, self-esteem, and general health perception at outcome were associated with an unfavorable outcome. Future research should focus on customizing existing treatment and studying additional treatment options.

Self-investigation to explore the impact of juvenile arthritis on adolescent life: a case-study.

OBJECTIVE: To gain insight into the personal experience and feelings of an adolescent with a chronic disease. METHODS: We report on the application of the self-confrontation method (SCM), illustrated by a case-example of an adolescent with juvenile idiopathic arthritis. RESULTS: Although taken at face value she was not impeded by the arthritis, through self-assessment with the SCM this adolescent acknowledged and addressed the emotional struggle to keep the arthritis secret and to constantly test the physical limits of her body. After the process of self-reflection, the adolescent showed a better integration of her arthritis experiences into her life story. CONCLUSION: With the SCM the adolescent could explore her own functioning and well-being on a manifest, as well as on an emotional and motivational level. PRACTICE IMPLICATIONS: In future research, by studying the self-investigations of a group of adolescents with chronic diseases, common risk factors for the development of a stable identity during adolescence might be identified. In clinical care, the SCM promotes self-knowledge, allowing for an intrinsic motivation to deal with the emotional impact of the disease.

Personality and chronic fatigue syndrome: methodological and conceptual issues.

Among clinical psychologists, consulting physicians, scientific researchers and society in general an image has emerged of patients with chronic fatigue syndrome (CFS) as perfectionist, conscientious, hardworking, somewhat neurotic and introverted individuals with high personal standards, a great desire to be socially accepted and with a history of continuously pushing themselves past their limits. The aim of this article is to (a) give a concise review of the main recent studies on personality and CFS, (b) address the major methodological problems in the study of personality in CFS and (c) discuss some of the conceptual assumptions that seem to limit the research on personality and CFS. The results of the reviewed studies range from no evidence of major differences between the personalities of patients with CFS and controls, to evidence of severe psychopathology and personality disorder in patients with CFS. Although personality seems to play a role in CFS, it is difficult to draw general conclusions on the relation between personality and CFS. It is argued that this is partially due to the diversity and heterogeneity in study methods, patient populations, control groups and CFS case definitions. Personality should be regarded as an important factor to be studied in CFS. However, additional studies are needed, not focusing exclusively on personality disorder, or personality considered on a general trait level. In recent developments in personality research, the continually evolving life narrative that makes sense of, and gives direction to, an individual's life is also regarded as an important aspect of personality. New insights into personality and CFS might be gained by systematically studying the self-narratives of patients with the syndrome.