Summary of qualitative predictors of medical mistrust.
| Theme | Description | Sample quote | Contributing studies |
|---|---|---|---|
| Healthcare providers (HCPs) mistrust and stigmatize the patients | When HCPs mistrust patients and display that mistrust, patients develop mistrust of providers.This mistrust includes being labeled a “drug addict” being judged by nurses and even hospital security staff. | “They get suspicious because they can’t believe you can be better in two days”The nurse turned around to me and said, “…we’re scared that you’re gonna get hooked on it and we don’t wanna see you down on the street hustling drugs”“They think we’re like two-hour junkies you know, as soon as the time is up, we want a fix”“There was a nurse who told me sickle cell was not a disease”“They’ll say, well you don’t look like you have sickle cell. How am I supposed to look?” | Alleyne et al., 1994 [36]Masese et al., 2021 [49]Ezenwa et al., 2016 [57]Williams-Gray and Senreich, 2015 [59]Maxwell et al., 1999 [63]Wickersham et al., 2022 [72] |
| Lack of emergency department (ED) physician knowledge about sickle cell disease (SCD) | Patient believes that ED physicians either do not know what sickle cell is, or do not fully understand it, leading to patients not being treated correctly in the ED. | “ED doctors should consult the SCD team but they do not, because I am a doctor and I know how to treat you”“My (hematology) doctor wrote that protocol…of course they (ED physicians) are not familiar with the dosage you’re on, things of that sort…there are specific protocols but they’ll ignore it”“Every time I enter the ED, I wonder if it will be the last time. Will they take my life seriously?”“One doctor asked me (about sickle cell), ‘wait what is that exactly?’” | Collins et al., 2022 [34]Young et al., 2020 [44]Sinha et al., 2019 [45]Crego et al., 2021 [48]Campbell et al., 2010 [55]Wickersham et al., 2022 [72] |
| Inadequate pain control during a pain crisis | HCPs (doctors and nurses) dismiss patients’ self-reported pain levels, making assumptions about their pain level, thus downrating their pain score and providing inadequate analgesia, and forcing patients to wait a long time for pain medication. | “They make us wait a long time for pain medicine”“I was screaming for painkillers and the nurse said I was pretending”“The nurse decided to cut down the dose without the doctor’s permission. When I saw the chart, I saw she was giving half the dose”“Pain is what the patient says it is, unless you have sickle cell, then it’s what the doctor says it is” | Collins et al., 2022 [34]Durgam et al., 2023 [42]Coleman et al., 2016 [61]Elander et al., 2004 [62]Maxwell et al., 1999 [63]Wickersham et al., 2022 [72] |
| Patient believes that HCPs racial biases impact treatment and care | Patients’ perception that HCPs harbor racially-motivated, implicit biases that impact their treatment. | “A white patient wouldn’t be treated like this”“Racial bias impacts how fast you get treatment”“This doctor saw everybody else, all the white people, before he saw me”“My race does influence my experience with SCD because blacks are viewed in a negative light”“My experience with sickle cell has been that I don’t want to go to a hospital. I think they’re insulting. I think that because of my skin color, they think I’m an idiot. I think it’s racism; pure simple racism” | Wakefield et al., 2018 [38]Durgam et al., 2023 [42]Carvalho et al., 2021 [47]Treadwell et al., 2020 [54]Wickersham et al., 2022 [72]Cole et al., 2007 [76] |
| Poor transition of care from pediatric specialty care to adult medical care | Patient descriptions of the negative aspects during the transition of care in the emerging adulthood period. | “Even though I’m 24…I’m still with my pediatric hematologist because she does sickle cell and sickle cell only. She doesn’t want me going to a hematologist and oncologist who does both”“I worry that I will have a doctor that doesn’t know SCD. Some doctors don’t know how to treat SCD and they act like they do” | Hauser et al., 1999 [51]Phillips et al., 2022 [53]Treadwell et al., 2020 [54]Williams-Gray and Senreich, 2015 [59]Wickersham et al., 2022 [72]Bemrich-Stolz et al., 2015 [74] |
| Characteristics of HCPs that lead to development of medical mistrust | HCPs displaying ableism and phobia of giving opioids.Provider bias about disability.Differences in prescribing pain meds.Racial cultural stereotypes. | “Participants suspected that the ED staff were reserving hydromorphone for patients without SCD. For example, ED staff advised they did not have hydromorphone; however, when the patient was hospitalized, hydromorphone was available”“Because so many people go to the ER, they do your labs, and if there’s hemoglobin like [mine] used to be an eight or so. And that’s like, ‘Oh, yeah. Hemoglobin is at eight. You can’t possibly be in a crisis.’ I go to (place) every six weeks to get the transfusions, so of course, my hemoglobin’s gonna be high: That doesn’t mean I’m not in a crisis...” | Collins et al., 2022 [34]Renedo et al., 2019 [35]Alleyne et al., 1994 [36]Durgam et al., 2023 [42]Sinha et al., 2019 [45]Carvalho et al., 2021 [47]Crego et al., 2021 [48]Masese et al., 2021 [49]Campbell et al., 2010 [55]Royal et al., 2011 [58]Williams-Gray and Senreich, 2015 [59]Maxwell et al., 1999 [63]Adegbola et al., 2012 [69]Weisberg et al., 2013 [71]Bemrich-Stolz et al., 2015 [74]Brown et al., 2015 [75]Cole et al., 2007 [76] |
| Adolescent specific predictors of medical mistrust | Adolescent patient descriptors of what makes them mistrust HCPs—being excluded from shared decision making and fear of transitioning to adult care. | “When you’re a pediatric sickle cell patient, you have the doctors there every step of the way, but not with adult sickle cell…I know when I first transitioned I never felt more alone in my life. And adult care providers are a lot more blunt and cold, like ‘I don’t know, I’m not really educated in sickle cell.’” | Collins et al., 2022 [34]Renedo et al., 2019 [35]Wakefield et al., 2018 [38]Durgam et al., 2023 [42]Crego et al., 2021 [48]Masese et al., 2021 [49]Hauser et al., 1999 [51]Phillips et al., 2022 [53]Treadwell et al., 2020 [54]Campbell et al., 2010 [55]Thomas et al., 2002 [56] |