Table 1.
Results Q1: What are blind patients’ perceptions of how their HCPs perceive them and perceive their competence?
| Theme | n | FG | Quote |
|---|---|---|---|
| Competence and Incompetence | |||
| Competence | 10 | 5 | “They don’t assume that I don’t know what I’m talking about or anything.” - Sarah, FG 2 |
| Incompetence | 30 | 7 | “They feel like because you’re blind, you can’t do anything! Like, you are totally incapable and not …the fact…that you know what you need. ‘Oh, how can you know that you have a headache? You’re blind.’“ - June, FG 2 |
| HCP response to patient competence | 17 | 7 | “He [doctor] had almost gotten another friend of mine who is blind killed because she was diabetic and he refused to forward the insulin into her hospital stay just because he thought she was being ‘crazy,’ which she absolutely was not.” - Mel, FG 5 |
| Addressing the Blind Patient | |||
| Does not address patient | 23 | 7 | “I’ve had, like, healthcare providers in particular ask the person who is, like, just randomly standing next to me, and asking, like, as if they were my companion. ‘Can you fill out the paperwork for him?’ And they’ll just say, ‘I’m just standing here.’“ - Moe, FG 5 |
| Addresses child | 3 | 3 | “I remember one time I went in…and I had my daughter with me, who was like eight or nine at the time, and they were gonna ask [her] the questions.” - Carl, FG 2 |
| Addresses patient | 5 | 4 | “He always spoke to me. He didn’t, like, refer to the other person as if maybe I couldn’t understand what he was talking about. It was just a straight conversation.” - Nancy, FG 1 |
| Interference with caregiver role | 7 | 5 | “Even if you can get people to deal with you directly, it’s really hard to take the next step and have them deal with you when you’re the caregiver. My husband has routine colonoscopies that you always have to bring somebody with you. Sometimes they’ve been fine with my being blind and sometimes they freak out because they’re like, ‘How are you gonna get him home?’ And I’m like, ‘Well, if I drove … he would still walk and get in the car. I’m gonna call a cab or Uber and go home with him.’“ - Sue, FG 6 |
| Warmth [and Impression Management] | |||
| Makes effort to appear warm | 6 | 4 | “I just try to be a…pleasant patient, try to be fun, to begin with. I know it’s not a fun thing to be, you know. I try to joke around with them. so…I’m guessing that’s maybe part of why most of my experiences with healthcare people have been really good.” - Sarah, FG 2 |
| Burden to appear warm/competent | 24 | 7 | “If you … walk tall with your big stick, people are a little bit more open toward you. If you look confident, look like you know where you’re going, they seem to be a bit more open. But that’s still again, I see that as kind of unfair cause if you’re. sick and you’re going to the hospital or you’re going to see your doctor and you feel under the weather, it’s not fair of them to judge you because you’re not looking confident.” -Mel, FG 5 |
| Cold | 11 | 7 | “They [HCPs] take it [assertiveness from patient] more as almost an affront.” - Sophie, FG 5 |
| Trust | |||
| HCP does not trust patient | 12 | 7 | “When I say something it’s like, ‘Well, what does she know? She’s only a blind person, right?’“ - Lucy, FG 6 |
| HCP trusts patient | 5 | 3 | “I feel like the doctor…takes the time to get to know me, that there’s like more trust.” - Annie, FG 3 |
| HCP respect and trust [Interrelation of trust and respect] | 31 | 7 | “All my positive experiences are with doctors who seem to respect that a) I have some… medical background and b) that I know my body very well.” - Tali, FG 3 |
| Respect | |||
| HCP does not respect patient | 27 | 7 | “It kinda makes you think that you’re more of an object for someone’s entertainment instead of an actual human being.” - Kevin, FG 1 |
| HCP views patient as inconvenience | 14 | 6 | “They wanted you to fill out all these forms and I couldn’t do it. The nurses wouldn’t do it, so they called up somebody from the staff and she didn’t want to do it ‘cause she wanted to go home early.” - Bob, FG 3 |
| Pity | |||
| Pity | 13 | 7 | “There’s the pity and the ‘Oh, we feel so sorry for you and we can’t fix you.’“ - Sophie, FG 5 |
| Patronizing tone | 5 | 4 | “They think you’re blind and so they have to speak really loudly to you. Or they speak really slowly and over-enunciate.” - Helena, FG 4 |
| Unsolicited help | 2 | 2 | “The nurse takes you back and you’re doing the pee-in-the-cup thing. So she starts to take the cover off [of the cup] and I said, ‘…I got myself here, I think I can [get the cover off the cap].’“ - Sue, FG 6 |
| HCP patronizing belief | 1 | 1 | “He was telling me how he’ll come take a tour when his kid is on school vacation …he likes to take his son with him to different places where he works, and he said the blind rehab place would be a good place to take him cause he likes to …show his son how the unfortunate live.” - Beatrice, FG 6 |
Note. n = number of participants who made at least one response in accordance with a given theme. FG = the number of focus groups where the given theme was mentioned at least once.