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'.

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.

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.