Table 3.
Common themes about PD from African-American, Chinese-American and White focus group discussions
| Categories | Common Themes | Sample Quote(s)* |
|---|---|---|
| Knowledge about Parkinson’s Disease | Symptom attribution to multiple disorders (when shown videos of PD cases) | “Well stroke is the first thing that comes to mind.” (AA, FG2, P2) |
| “He might have a nervous breakdown or something.” (AA, FG7, P8) | ||
| “Shaking. Something to do with the nerves.” (AA, FG9, P6) | ||
| “They all seem like they look lonely.” (AA, FG9, P6) | ||
| “She’s got osteoporosis.” (W, FG3, P6) | ||
| “A lot of people age differently.” (W, FG3, P2) | ||
| “Getting older.” (C, FG5, P2) | ||
| “Don’t really know.” (C, FG5, P4) | ||
| Uncertainty about causes of PD | “It starts with the nerves.” (AA, FG6, P3) | |
| “[He] dove into some water and hit his head. And they believe that is when it started.” (W, FG3, P7) | ||
| “It’s probably hereditary.” (W, FG3, P5) | ||
| “It can come from arthritis too.” (W, FG4, P8) | ||
| “I think it comes from stress. Nervousness, stress.” (W, FG4, P1) | ||
| “It most likely has to do with the brain.” (C, FG8, P3) | ||
| “Using the brain too much. Thinking too much. Over-thinking. Overusing the brain.” (C, FG5, P7) | ||
| “Old age” (C, FG8, P4) | ||
| Treatment awareness varies | “If not now, sometime down the line it will be. I think. I think [there’s a] cure for anything ‘cause they have all kinds of medications—they all kinds of [inaudible] and science you never know.” (AA, FG2, P8) | |
| “Nowadays there’s treatment for Parkinson’s disease and you have to get the treatment.” (W, FG 4, P1) | ||
| “And there’s nothing you can really do.” (W, FG3, P3) | ||
| “None, none.” [in response to availability of medications] (C, FG8, P7) | ||
| Attitudes and beliefs about PD | Loss of independence | “It’s disabling and you need help. And you have trouble speaking and eating.” (AA, FG2, P5) |
| “I’d feel helpless. I’d feel very helpless… so I would want to have a strong support with me.” (AA, FG1, P2) | ||
| “You have to depend on others to help you.” (W, FG10, P4) | ||
| “If you really can’t do things by yourself, this will be inconvenient.” (C, FG8, P8) | ||
| Accepting | “I think I would try really hard to accept [a Parkinson’s disease diagnosis]. You know? Because you can’t do nothing about it.” (AA, FG2, P1) | |
| Stigma/burden on family | “But again, it goes to being almost like a stigma on the family, and so people think, you know [do not seek help].” (W, FG10, P6) | |
| “…don’t wanna put that burden on your family.” (W, FG3, P2) | ||
| Loneliness and depression | “Say if I did get this disease, I would feel as if I had no other choice, and also lonely” (C, FG8, P2) | |
| “[I would feel] very discouraging, very depressed. But, I even hate to say that some would want to really end their life.” (W, FG10, P2) | ||
| Actions in response to PD signs or symptoms | Seek help | Go to the doctor. Get medicine.” (AA, FG6, P4) |
| “Go to a professional and get educated on the disease.” (AA, FG7, P6) | ||
| “I would call my family at home to help.” (AA, FG6, P2) | ||
| “Listen to the doctor.” (C, FG5, P4) | ||
| “[Someone with suspected PD] should go to the doctor. Nowadays, there’s treatment for Parkinson’s disease and you have to get the treatment.” (W, FG4, P5) | ||
| Lack of desire to live | “I would probably become suicidal.” (AA, FG6, P6) | |
| “I’d rather be dead.” (W, FG3, P5) | ||
| Multiple reasons someone with suspected PD may not seek help | “One is that the person does not have the knowledge that seeing a doctor can assist with helping him get better.” (C, FG5, P3) | |
| “Well he must have lost faith in living, that’s why he doesn’t go.” (C, FG5, P2) | ||
| “Fear” (W, FG4, P6) | ||
| “…they could be scared too.” (AA, FG7, P1) | ||
| “Some don’t want to accept the fact that they’re losing it.” (AA, FG6, P7) | ||
| It’s not curable. That’s why.” (W, FG3, P5) |
*
Notation within parentheses: AA = African-American; C = Chinese-American; W = White; FG = Focus group; P = Participant