An Interpretive Phenomenological Study of the Life Experiences of People with Complex Regional Pain Syndrome (CRPS): A Focus on Millennial Women

Background and Purpose: Complex Regional Pain Syndrome (CRPS) is a rare, incurable disorder that causes intense, persistent, chronic pain that exceeds what would be expected from the trauma that caused it. Previous research suggests that there are 25.2 new cases of CRPS per 100,000 people per year, and it affects more than three times as many women as men. People with CRPS experience pain that makes it difficult to perform activities of daily living, sleep disturbances, depression, economic disability, and social isolation. Women in their 30s and 40s, who experience life-cycle events such as employment, marriage, and childbirth, may be particularly limited by the onset of CRPS, but there is a lack of research that considers the generational characteristics of CRPS patients. This study aims to broaden our understanding of the disease experience of people with CRPS by analysing the life changes experienced by millennial female patients (30-44 years old) in Korea after the onset of CRPS symptoms.

Methods: The study was designed as a qualitative study utilising van Mane's hermeneutic phenomenological methodology. Participants were recruited using purposive and snowball sampling. Five millennial women with CRPS participated in the study. Data was collected through semi-structured in-depth interviews lasting 90 to 120 minutes. The collected data were analysed using van Manen's four fundamental existentials as an analytical tool.

Findings: Four fundamental existential themes emerged from the analysis. (a) LIVED BODY: Pain on the borderline between doubt and certainty; Pain that has become socially accepted through diagnosis; (b) LIVED TIME: Life dominated by pain; a realization of the value of everyday life; and (c) LIVED SPACE: Everyday spaces that have become places of pain and fear, creating your own Carencia, and (d) LIVED HUMAN RELATIONS: feeling upset at being stigmatised as a sick person, feeling lonely in proportion to the length of your illness, and making new connections as a person living with CRPS. People with CRPS had made their invisible pain visible with their diagnosis and developed a new lifestyle with their pain by changing their relationships and living space, but they still experienced loss of work and financial hardship.

Conclusion and Implications: Based on the findings, the researcher identified common emotions, adaptations, and life reorganization processes experienced by millennial women with CPRS, which led to the following recommendations. First, there is a need to improve the understanding of CRPS among healthcare providers, caregivers, and the public. Second, healthcare coverage should be strengthened and the conditions for disability ratings should be relaxed to allow people with CRPS to lead normal lives. Third, the role of medical social workers should be expanded to provide the necessary support for people with CRPS who have complex needs. Fourth, a range of social supports should be considered to enable people with chronic pain to remain economically active.