teresag Posted January 24, 2005 Share Posted January 24, 2005 Hello - Some of you may recall that I am researching sources of distress in lung cancer. I'd like to ask for your impressions. Below are some sample quotes from interviews of people with NSCLC. I would like to know if the categories make sense to you in the context of your own lung cancer experience. Is there anything missing that causes distress for you? I will warn you that some of the quotes are emotionally powerful. Any comments at all would be appreciated. Thank you. Symptom distress (how symptoms cause distress) 1. Impact on usual activity - decreased productivity is distressing. “Well, distress is what I’m able to do or not do. I get distressful because I can’t do what I used to be able to do several months ago." 2. The unexpected - especially in relation to the initial diagnosis. "I had blood in my urine, my skin turned yellow, and shortness of breath, then I went to the hospital and they did a bunch of tests and they had to put a stent in my left main artery. That’s when they also discovered the lung cancer. So it was discovered by accident." 3. Emotions - fear, worry, & depression are distressing. "The shortness of breath? It’s very frightening. VERY frightening. You feel like or at least I felt like – uh – this must be how it is if someone was going to put a pillow over your face and kill you." Cancer Distress (distress not directly related to symptoms) 1. Concern for others causes distress. "watching my caregivers stress themselves out for me and they've got to take care of themselves because they’re overworked - you’re worried about everything that you can’t do for your family.” 2. Waiting & wondering - esp. in relation to scans, is distressing. "Waiting from scan to scan gets you so upset...You wonder: Is this it? Is this the day they’re going to tell me, it’s all over but the shouting?" 3. Stigma - its effects on how people are treated, research funding, etc. can cause distress. "People who smoke are often blamed for it and they should not be.“ 4. Forging ahead - staying positive for self & others to prevent or ease distress. "Focus on living, not dying. Look at it as part of everyday life. Adjust as I go along." Health care system distress (interactions with the health care system can cause or ease distress.) "I’ve been very confident in the care and treatment I’ve been receiving here is about as good as I’m going to get. I know I couldn’t get this kind of care in [another hospital]." Thank you in advance for your input - it is very valuable. Best wishes, Teresa Quote Link to comment Share on other sites More sharing options...
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