Abstract
Living with psoriasis is a considerable burden and quality of life in patients is deeply affected, yet compliance with therapy is a major problem. The literature is abundant in quantitative studies stating the incidence of decrease in quality of life and related, measurable terms, and in efforts directed at the improvement of therapies. However, it is sparse concerning the experiences of patients.
This study aims to promote an understanding of the daily life of patients with psoriasis with particular regard to how they manage the disease, ultimately to improve nursing care to these patients.
A qualitative, collective case study design was applied. The participants were 4 adult patients with a long and complicated psoriasis history. They were interviewed in depth focusing on their experiences related to psoriasis and its treatment.
The patients suffered physically from itch and pain. However, the essence/core of the patients’ problems regarding living with psoriasis was the meaning of a disfigured appearance; psoriasis created a stigma. The daily life of patients was a struggle caring for themselves and overcoming the complexities of being different to the expected norm, occupying great amounts of energy. They described their lives as a tightrope walking of taking into account the disease yet having a life worth living. The personal significance of the disease showed to be the most important factor in respect to the patients’ deliberations and actions regarding treatment and care. The patients were continuously appraising their situation in respect to their goal priorities, choosing among consequences of treatments and consequences of psoriasis.
Psoriasis creates a stigma and the patients struggle to overcome the effects of stigma, trying to lead a normal life. The personal significance of the disease is the most important factor in respect to the patients’ choice regarding treatment and care; individual goal priorities plot/determine the course.
This study aims to promote an understanding of the daily life of patients with psoriasis with particular regard to how they manage the disease, ultimately to improve nursing care to these patients.
A qualitative, collective case study design was applied. The participants were 4 adult patients with a long and complicated psoriasis history. They were interviewed in depth focusing on their experiences related to psoriasis and its treatment.
The patients suffered physically from itch and pain. However, the essence/core of the patients’ problems regarding living with psoriasis was the meaning of a disfigured appearance; psoriasis created a stigma. The daily life of patients was a struggle caring for themselves and overcoming the complexities of being different to the expected norm, occupying great amounts of energy. They described their lives as a tightrope walking of taking into account the disease yet having a life worth living. The personal significance of the disease showed to be the most important factor in respect to the patients’ deliberations and actions regarding treatment and care. The patients were continuously appraising their situation in respect to their goal priorities, choosing among consequences of treatments and consequences of psoriasis.
Psoriasis creates a stigma and the patients struggle to overcome the effects of stigma, trying to lead a normal life. The personal significance of the disease is the most important factor in respect to the patients’ choice regarding treatment and care; individual goal priorities plot/determine the course.
| Bidragets oversatte titel | At leve med psorisasis |
|---|---|
| Originalsprog | Engelsk |
| Status | Udgivet - 2004 |