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

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Abstract

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.

Introduction

During adolescence, whilst independence and the creation of a stable identity are important developmental tasks, dealing with challenges caused by a chronic disease – such as arthritis – may constitute a risk for psychosocial development [1], [2], especially due to the lack of a definite cure, the pain and the unpredictable course of the disease. As yet, attempts to understand the impact of juvenile idiopathic arthritis (JIA) upon adolescent psychosocial functioning in a general sense seem inconclusive. Some studies demonstrate an increased risk of social and emotional problems [3], [4], while others show their functioning to be comparable to levels found in the general population [5], [6], [7].

Laura, an 18-year old student, has been diagnosed with poly-articular arthritis. The arthritis went into remission at age 10. Control visits with her rheumatologist are on a yearly basis. Laura lives with both parents, she is finishing a secretarial course and she works in a shop. To study the value of the self-confrontation method in chronic illness, Laura volunteered to reflect on the role and the impact of arthritis in her life. Her case will be presented as an example of the use of the self-confrontation method to systematically study the self-narrative of an adolescent with JIA, thereby expecting to (a) gain insight in her psychosocial functioning and (b) evaluate the process-promoting effect of her self-assessment.

Section snippets

The self-confrontation method (SCM)

The SCM is developed to study individual experiences and their ordering into a meaning system through self-investigation, with special attention to affective organization [8], [9], [10]. Although the theoretical background and practical use of the SCM have been well evaluated, the use of the SCM with adolescents with chronic illness has not been previously described.

Results

The questionnaires prior to Laura's self-investigation (t1) demonstrate that she does not experience physical limitations due to her arthritis, except occasionally an inability to participate in physical education at school (CHAQ, Supplementary Table S2). The results of both the CHQ (Supplementary Table S3) and the CIS-20 (Supplementary Table S4) demonstrate that Laura also seems to function well; she reports to be happy with the functioning of her family, friendships and she feels

Discussion

The self-confrontation method has been previously studied in diverse fields (e.g. depression [18], value-crisis [19], and visual impairment [20]) but not in the field of chronic illness. Much research has been conducted on the impact of JIA on adolescents’ psychosocial functioning. Most studies [21] considered only one aspect of psychosocial functioning (e.g. disease duration, intrapersonal variables, life events) which might have resulted in an overly optimistic or pessimistic view [22]. In

Acknowledgements

Preparation of this manuscript was supported by the Dutch Arthritis Association (grant number NR 03-2-301). We gratefully acknowledge the participating adolescent for her collaboration in the study. The authors are thankful to Elise van de Putte for her constructive remarks and suggestions on an earlier draft of this article. The authors confirm that all patient identifiers have been removed or disguised so the patient described is not identifiable and cannot be identified through the details

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