Dynamic balancing in the adjustment to chronic illness among people living with psoriasis: a qualitative study

Abstract

BACKGROUND AND PURPOSE: Psoriasis is a genetic, inflammatory skin disease characterized by itch and pain, which affects 1-3% of the population worldwide. Although it is not considered as a life-threatening disease, its incurability and unpredictability of prognosis imply the nature of never-ending treatment process for patients, which may induce tremendous pressure in terms of physical, psychological, emotional and social distress. Whereas existing models on illness perception and illness coping usually describe one’s illness experiences from a stage-like perspective, clinical experience on people with psoriasis suggests that the physical and emotional states of the patients will change dynamically in terms of oscillating between the experience of survivorship and victimship. The traditional stage models therefore cannot depict the non-stage-like coping process that people with psoriasis may encounter. The current study aims at developing a conceptual model for people living with psoriasis that can describe the phenomenon of dynamic balancing in the adjustment experience towards their non-curable illness. METHOD: Twelve persons living with psoriasis were recruited through purposive sampling. The informants are predominantly male (7 males, 5 females), with age from 21 to 62 (mean: 49), and duration of psoriasis from 3 to 34 years (mean: 15). Informants were invited to attend a 2-hour in-depth interview. The content of interview included their illness experience, perception towards their condition, multidimensional impacts on daily life (physical, psychological, familial, and occupational), expectations towards the prognosis, coping strategies and social support. The transcripts were jointly coded and analyzed by the team that comprised of clinical researchers and registered social workers. Guided by grounded theory, common themes were then identified and consolidated to generate a conceptual model. RESULTS: Despite the diversity in personal experiences and coping strategies, informants’ verbatim were converged to four major themes: 1) Surviving with bio-psycho-social discomfort, 2) Sustaining hope in times of disappointment, 3) Shifting from victim to survivor, and 4) Soliciting support and resource. These themes could be formulated as a dynamic balancing mechanism that people living with psoriasis would oscillate back and forth between ‘victim liked’ experiences and ‘survivor liked’ life functioning. Unlike a linear step-by-step change, this dynamic balancing process would be happened in a lifelong process, in which patients strived for coexistence with psoriasis. The severity of psoriasis was not the sole predictive factor of the outcome for illness management; positive perceptions and resilient-coping were conducive to facilitate the coping and survivorship of the non-curable nature of psoriasis. CONCLUSIONS AND IMPLICATIONS: Based on thematic analysis, this study proposed a dynamic balancing model to elaborate the complexity of lived experience with psoriasis. It vividly delineates the pathway of active coping and positive thinking to advance people to the ultimate state of coexistence with the disease. This model can enrich healthcare professionals in understanding of the emotional turbulence and complications that people living with psoriasis may go through, so that they can make patient-centered care and treatment plan for the patients in the future.