Introduction
Methods
Study setting and design
Participants
Characteristics | N (%) or mean ± SD (n = 22) |
---|---|
Gender | |
Male | 14 (63.6) |
Female | 8 (36.4) |
Age (years) | |
< 35 | 7 (31.8) |
35–50 | 9 (40.9) |
> 50 | 6 (27.3) |
Educational level | |
No school or primary school | 2 (9.1) |
Secondary school | 2 (9.1) |
High school or technical secondary school | 11 (50.0) |
University degree and above | 7 (31.8) |
Marital status | |
Married | 15 (68.2) |
Divorced or widowed | 1 (4.5) |
Single | 6 (27.3) |
Occupation | |
Public institutions | 4 (18.2) |
Company employee | 6 (27.3) |
Freelancers | 4 (18.2) |
Peasants | 2 (9.1) |
Students | 1 (4.5) |
Unemployment | 5 (22.7) |
Psoriasis area and severity index (PASI) | |
7–12 (moderate) | 13 (59.1) |
> 12 (severe) | 9 (40.9) |
Duration of psoriasis (years) | |
Mean ± SD | 12.5 ± 10.5 |
Range | 1–41 |
Data collection
Main questions |
How do you feel today? How is your life today? |
What kind of treatment do you receive for treating psoriasis? |
How do you like your treatment? |
How is psoriasis affecting your life? Can you give me some examples? |
Could you describe your daily life after you were diagnosed with psoriasis? |
Potential follow-up questions |
What kind of physical or physiological discomfort does it bring to you from psoriasis? |
What are the psychological or spiritual effects of suffering from psoriasis? |
What is the impact of getting psoriasis on your family or social relationships? |
What other aspects do you feel have a great impact on your health during the treatment or treatment of psoriasis? |
Data analysis
Results
Key theme
Category | Frequencies of categories N (%) | Subcategory | Frequencies of subcategories N (%) |
---|---|---|---|
Symptoms, symptoms management and pain | 21 (95.5%) | Hurting | 9 (20.0) |
Itching | 8 (17.8) | ||
Bleeding | 7 (15.6) | ||
Burning/stinging | 6 (13.3) | ||
Irritated | 5 (11.1) | ||
Flaking | 5 (11.1) | ||
Discomfort | 5 (11.1) | ||
Functioning and activities of daily living (ADLs) | 20 (90.9%) | Summer activities | 10 (18.9) |
Choose of clothes | 8 (15.1) | ||
Good sleep | 8 (15.1) | ||
Go out of the house | 6 (11.3) | ||
Take a bath | 4 (7.5) | ||
Go to public baths or pools | 3 (5.7) | ||
Go to hairdresser | 3 (5.7) | ||
Sporting activities | 2 (3.8) | ||
Walk | 2 (3.8) | ||
Make the bed | 2 (3.8) | ||
Sunbath on beach | 1 (1.9) | ||
Buy clothes | 1 (1.9) | ||
Go on a business trip | 1 (1.9) | ||
Take a bus or taxi | 1 (1.9) | ||
Do housework | 1 (1.9) | ||
Psychological impact/mental health | 19 (86.4%) | Feel anxious | 11 (21.6) |
Feel inferior | 9 (17.6) | ||
Feel depressed | 8 (15.7) | ||
Feel irritable | 7 (13.7) | ||
Feel lack of hope | 6 (11.8) | ||
Feel embarrassed | 3 (5.9) | ||
Feel suicidal | 3 (5.9) | ||
Perceived stigma | 1 (2.0) | ||
Feel short tempered | 1 (2.0) | ||
Feel dependent | 1 (2.0) | ||
Feel the body is unclean | 1 (2.0) | ||
Social impact | 19 (86.4%) | Worry about the thoughts of others | 10 (21.7) |
Sexual behavior | 9 (19.6) | ||
Make friends and meet people | 7 (15.2) | ||
Relationships, marriages, childbearing being affected | 7 (15.2) | ||
Worry about the reactions of others | 4 (8.7) | ||
Social contacts and activities | 4 (8.7) | ||
Work and career | 3 (6.5) | ||
Feel lack of understandings of others | 1 (2.2) | ||
Relationships with family | 1 (2.2) | ||
Employment and finances | 13 (59.1%) | Reduced ability to work | 6 (28.6) |
Lower income | 10 (45.5) | ||
Cannot go to school | 3 (14.3) | ||
Choices of a job being affected | 2 (9.5) |
Symptoms, symptoms management and pain
Even if I’m sleepy at night, I can’t fall asleep because it’s too itchy. Sometimes I wake up in the middle of the night. It’s so uncomfortable and I don’t know how to make it better. (Male 1, 28 years)It hurts when I do farm work but I have to suck it up. (Male 10, 55 years)
The symptoms of psoriasis are not itching but pain. It hurts when I bend my waist and legs. It hurts when I do other activities. But I haven't taken painkillers. I endure the pain and try to reduce my daily activities. (Male 6, 58 years)This disease (psoriasis) is very painful, especially in the evening. It hurts and itches. I dare not take painkillers. Painkillers only make me comfortable for a while, and then it will hurt again. I think taking painkillers for a long time must be bad for my health (Female 21, 35 years)
When it itches, I’d scratch until it bleeds. In winter it would crack and hurt a lot. (Male 1, 28 years)(It is) extremely itchy and always has flakes falling off. In the worst time, the fallen flakes from my legs would add up to 50 g. A dreadful scene. (Male 13, 62 years)
Functioning and ADLs
The skin would grow so thick and bending down or bending legs would hurt. Moving would hurt too. (Male 6, 58 years)I used to like going hiking in the mountains with friends. And now walking becomes a trouble for me. (Male 14, 59 years)
I have to change clothes and sheets every day because of so many skin flakes. (Female 15, 30 years)I usually have one shower each day but since I have this disease, I wish I could shower in the morning and the evening. Shower makes me feel better. (Female 8, 31 years)
It hurts when I do farm work but I have to suck it up. A countryman has to work in the field. Lying around and doing nothing is never an option. (Male 10, 55 years)
Psychological impact
I don’t think the treatment is working well. I don’t hold up my hopes anymore. (Male 18, 51 years)Sometimes I do feel pessimistic. I can’t see hope. No matter how much it costs, it will be worth it if the disease is under control and I don’t suffer this much. But after so many years and so many doctors, it’s still not cured. (Male 11, 46 years)The disease is frustrating. I would rather have cancer. If I had cancer, people would feel sorry for me. But no one feels sorry for me with this disease. I even feel disgusted looking at myself. It looks dirty. (Male 6, 58 years)
The only thing that scares me is the heredity of this disease. We were going to have another child, but now we’re afraid to pass this on to our kid. Sometimes my daughter says “mom, I’ve got something here on my leg. It itches.” And I would be so anxious and take her to the hospital. I’d only be relieved if the doctor says ok. (Female 21, 35 years)
Public bathhouses put up signs to forbid people with contagious diseases from going in. One time I took off my clothes to go inside. Someone asked me what the disease was. I explained but they seemed reluctant to let me in. I was so embarrassed and have never been to public bath houses ever again. (Female 17, 32 years)I used to be confident no matter with my skin or other factors. Suddenly I got this disease. Sometimes when I’m with friends, they’d say “your skin was so good and suddenly you get this rash all over. I would be disgusted if I were you.” And I’d suddenly feel hopeless for this world and this society. (Female 8, 31 years)I always sit in the last row on a bus because people would give you a weird look. They would stare especially in summer. (Male 1, 28 years)
Social impact
I don’t go to friends’ gatherings anymore. Sometimes it shows even on my face and I feel embarrassed to go out. If I go have lunch with my friends, and the skin flakes keep falling off, I couldn’t be at ease. Even if there were no flakes, there would be white patches on the skin. I fear it would disgust others. (Female 17, 32 years)I wouldn’t dare to share a room with others on business trips. I’m afraid if colleagues see me, they would despise me. (Male 6, 58 years)One time a friend invited me to a hot spring bath, and I declined. I feared people might find me with the disease. (Male 11, 46 years)I rarely go to public bathhouses in my workplace back in the day. I felt I was a dangerous beast and would scare people away. (Male 20, 70 years)
I’m reluctant to show my arms in my uniform at work. Always wearing long-sleeves to avoid being seen. If people ask, I feel embarrassed and upset. Sometimes it’s in the middle of an interesting conversation, and the moment would be gone. (Female 16, 46 years)
If a couple is about to have sex, it would kill the mood once the clothes are off. (Male 3, 37 years)I have my own bed with sheets and blankets of my own. I isolate myself from my family. There’s no other way. (Male 5, 42 years)I don’t sleep on the same bed with my wife. I sleep in another room. I loathe myself. (Male 18, 51 years)(I’m) Not confident. For example, when looking for a marriage partner, I feel reluctant to tell the truth but it’s worse to hide it as the disease is genetic. I don’t want to spoil others’ chances. (Male 22, 31 years)
I know a girl patient of 25 years old. She doesn’t even want to have a relationship, fearing being despised. She always says “who would want me in this disease?” She’s worried if she gets married and the disease relapses, she’d end up in a divorce. (Female 19, 45 years)
Negative impact on employment and finances
It affects work efficiency. Let’s say if I’m working on something and touched my hair accidentally. Dandruff would fall a lot and I would feel dirty and itchy and couldn’t resist scratching. If it bleeds, my concentration on work would be directly lowered. (Male 2, 30 years)
I couldn’t work. When it’s getting serious, I have to take some rest. (Male 5, 42 years)I think the disease is a heavy blow on people’s enthusiasm. The Spring Festival is an important time for businesses. But when the disease is back, I have to stop everything. (Female 12, 50 years)I don’t want to go to school. Not in the mood. (Male 7, 16 years)