Table 6 Examples of patient-clinician discordance for Themes 3 and 4
Theme 3. Different expectations and criteria for assigning HLQ scores | Patients | Clinicians |
Sub-theme 3a) Action is a more important criteria for clinicians than for patients | ||
Scale 3. Actively managing my health | P105 (Agree) There is not much else to do except to try to get better. | C105 (Strongly Disagree) He actually doesn’t do anything that he says he might do. |
Scale 9. Understand health information well enough to know what to do | P115 (Quite Easy) They tell you what to do. | C115 (Quite Difficult) I don’t know whether it is more that she is just not willing to follow the advice. She may understand it but is not willing to act on it. |
Sub-theme 3b) Patients don’t always know what they don’t know | ||
Scale 6. Ability to actively engage with healthcare providers | P103 (Quite Easy) If I don’t tell them [doctors] my problems, how can I expect them to give the right advice or help me? If I’m not honest, what’s the point in going? | C103 (Quite Difficult) I think it almost might be Very Difficult, he has limited understanding about his difficulties and finds it difficult to help doctors to understand. He is not insightful about his health issues. |
Scale 6. Ability to actively engage with healthcare providers | P112 (Quite Easy) Yep. Most doctors are quite understanding. | C112 (Quite Difficult) Because she doesn’t ask prying questions. She will be told the information but doesn’t have a discussion. She might check it on the Internet but doesn’t talk with doctors. |
Scale 6. Ability to actively engage with healthcare providers | P116 (Very Easy) I can pretty much discuss anything. | C116 (Quite Difficult) She couldn’t sit with the discomfort about what she needed to do. She wanted to ignore her condition and pretend it would go away. She wanted to distract or make a joke if the talk got too serious. |
Scale 9. Understand health information well enough to know what to do | P113 (Quite Easy) That’s easy, no problem | C113 (Quite Difficult) I’m not sure what his comprehension is but I think it is not that high. He gets mixed up a bit with fairly simple instructions about how many times to take a tablet. |
Sub-theme 3c) There are different points of comparison (providers compare across patients, patients compare across providers) | ||
Scale 7. Navigating the healthcare system | P116 (Quite Easy) [About knowing the best care for her] It’s the same thing every time; the right medication, 10 days in hospital on this drug, and then home. | C116 (Quite Difficult) Back then her decision making wasn’t that great. She would head for the hospital. It was all very reactive – wait till she gets sick then get help. |
Sub-theme 3d) There are different expectations for support when ill | ||
Scale 4. Social support for health | P102 (Strongly Disagree) People say they’ll help but when the time comes, they don’t. | C102 (Agree) [She has] a lot of health practitioners and she’s got her mother, she can rely on her mother. |
Scale 4. Social support for health | P107 (Agree) I have support from everybody… they come running. | C107 (Disagree) If they have a fight then they drop right off. Support is a bit ad hoc and always a drama. It is not strong support because it is not consistent. |
Scale 4. Social support for health | P111 (Strongly Agree) Well, I ring an ambulance if I need help. | C111 (Disagree) She has some but she would really have her mother as her main support. |
Theme 4. Different perspectives about a patient’s reliance on healthcare providers | Patients | Clinicians |
Scale 7. Navigating the healthcare system | P116 (Quite Easy) But only though my carer lady [HARP clinician] | C116 (Quite Difficult) HARP can tell her. She wouldn’t go to the library, wouldn’t look it up on the computer. |
Scale 8. Ability to find good health information | P104 (Quite Easy) I get it straight from the doctor’s surgery. He’s got boards up [with information]. | C104 (Quite Difficult) The response would be Cannot Do if he was on his own but with the help of the healthcare providers he can do it. |