The Lived Experience of Adolescents With Chronic Pain: A Phenomenological Study

PURPOSE: The purpose of this phenomenological study was to explore the lived experience of adolescents living with chronic pain. These findings provide a better perspective for occupational therapy practitioners about the adolescents’ experience living with chronic pain and enable therapists to provide more effective intervention options to improve occupational performance and life satisfaction for adolescents with chronic pain. This study may also lead to future research in the area of adolescent chronic pain and occupational performance.

DESIGN: The study used a phenomenological design with both interviews and visual depictions by adolescents living with chronic pain. The participants were ages 13–19 yr, had been diagnosed with a chronic pain condition at least 6 mo prior to participation in the study, were free from any major psychiatric disorder, were proficient in English, and had not entered college-level courses.

METHOD: Interviews followed a combined approach of a standardized open-ended interview style and interview guide style. The interviewer followed a semistructured format with preselected questions. The interviewer also had the flexibility to ask questions not found in the interview guide based on responses of the participant. Probing questions were used to promote elaboration of the story told by the interviewee. This combined approach ensured a comprehensive account of the questions for the study while allowing free association of the participants in areas they felt were important to cover. Each participant was asked to visually depict his or her chronic pain through forms of visual media including paper, pencils, markers, and paint. The purpose of this diagram was to allow the participant to describe how the chronic pain affected his or her body and life.

The interview data were analyzed through thematic analysis, as described by Moustakas (1994) as a modified version of van Kaam’s (1966) method of analysis. The data analysis process was framed by using the core constructs in the Person–Environment–Occupation (PEO) Model (Law et al., 1996). The process of phenomenological reduction was used to analyze the experiences of the participants in the study. Analysis of the visual depiction data occurred using the PEO Model as a framework along with the themes that arose in the transcripts. Both a cursory examination along with an in-depth analysis of the visual depiction occurred to help give a description of what life is like living with chronic pain. The visual depictions were compared and contrasted against the data from the transcripts and the combined thematic descriptions found in the data.

RESULTS: Four major themes emerged from the study data. The first theme was pain identity; participants identified themselves as someone who lived with chronic pain, and it identified a part of who they are. The second theme was invisible disease; chronic pain is a disease that cannot typically be seen and, therefore, a disease that is difficult to explain and to gain empathy for from peers, health care providers, and teachers. The third theme identified in the study was occupational loss; participants identified a significant loss in their ability to maintain a productive and meaningful life engaged in self-chosen occupations. The fourth theme identified in the study was uphill climb to regain life; participants identified a steep decline in occupational engagement followed by a slow and steep uphill climb in order to regain their life and become productive once again.

CONCLUSION: The results show that the participants experienced commonalities, which the researcher organized into four themes: pain identity, invisible disease, occupational loss, and uphill climb to regain life. The study illustrated to occupational therapy practitioners the underlying issues adolescents face when dealing with chronic pain in order to provide insight into the decline in occupational performance. The study also provided insight into ways to help adolescents make the uphill climb to return to prior occupational performance levels across all domains. Occupational therapy practitioners can help maximize occupational performance in adolescents with chronic pain to improve quality of life and the adolescents’ future physical, emotional, and social trajectory.

References

Cohen, L. L., Vowles, K. E., & Eccleston, C. (2009). The impact of adolescent chronic pain on functioning: Disentangling the complex role of anxiety. Journal of Pain, 11, 1039–1046. https://doi.org/10.1016/j.jpain.2009.09.009

Law, M., Cooper, B., Strong, S., Steward, D., Ribgy, P., & Letts, L. (1996). The Person–Environment–Occupation Model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63, 9–23. https://doi.org/10.1177/000841749606300103

Moustakas, C. (1994). Phenomenological research: Analysis and examples. In A. Virding (Ed.), Phenomenological research methods (pp. 120–154). Thousand Oaks, CA: Sage.

van Kaam, A. L. (1966). Application of the phenomenological method. In A. L. van Kaam (Ed.), Existential foundations of psychology (pp. 294–329). Lanham, MD: University Press of America.