Summary of consequences/outcomes of medical mistrust development.
| Theme | Description | Sample quote | Contributing studies |
|---|---|---|---|
| Impact on patient medication and treatment plan adherence | Concerns about medication side effectsConcern that providers are not being transparent about medications and all treatmentsConcern about the persistence of doctors in trying to prescribe certain therapies hydroxyurea (HU) | “HCPs are not up to date on the latest treatments”“I’m pretty much like, why is she still talking about this? I tell her no every time, will she give up? But she doesn’t. She asks me every time”“I wasn’t interested in taking more drugs and a drug (HU) with toxic effects”“my nurse had on gloves and I asked why she has on gloves and she said that HU is chemotherapy, to which I thought, I’m on chemo?” | Sinha et al., 2018 [46]Masese et al., 2021 [49]Weisberg et al., 2013 [71]Jabour et al., 2019 [77] |
| Impact on patient psychological outcomes | Fear of being given poor or inadequate treatmentAngerFatalismAnxietyHelplessnessFrustration: about lack of care options, about being dismissed, about being stereotypedBeing made to feel invisibleDevelopment of medical trauma | “You see, our society accepts and treats cancer patients differently. They can’t see that sickle cell disease is something you’re born with. I’d say their pain is less than ours. However, they get better treatment, better pain management than sickle cell patients”“It bothers me quite a bit because I’m not getting the treatment that I need because of fear of giving a sickle cell patient drugs that are addicting”“There is no SCD clinic in my hometown, and limited (care) options because of Medicaid”“When you (health care providers) look at me and say that I am an addict for getting a medicine that is going to make me feel better in a disease I have no control over whatsoever, then I know right then and there you are categorizing me. You are looking down on me. You have nothing good to think about me. So, it makes me very angry. It really does”“... it makes me feel like, you know, my life is worth nothing to them. You could drop down dead, they wouldn’t care you know, another bed for somebody else”“I was stressed and thinking of killing myself” | Collins et al., 2022 [34]Harris et al., 1998 [37]Smith et al., 2017 [41]Oyedeji et al., 2025 [50]Hauser et al., 1999 [51]Phillips et al., 2022 [53]Campbell et al., 2010 [55]Thomas et al., 2002 [56]Elander et al., 2004 [62]Strickland et al., 2001 [73] |
| Impact on patient behaviors | Avoidance of care or care siteDelaying care (waiting to go to emergency room)Changing their appearance to be taken seriously and not be labeled a “drug addict” | “I try to avoid the ED as much as possible”“I don’t like going to the ED…they act like I’m a junkie or something because I ask for pain medication”“Even now when I go back to the hospital, I don’t fully trust them. I try to avoid the hospital as much as I can”“When you have sickle cell disease, you have to look a certain way...if you look shabby then you’re a drug user”“This nurse is very insensitive; she has insulted me on several occasions and made me cry. This has caused unnecessary stress during my crisis [...] (this has made me feel) [...] uncomfortable [...] I no longer use the center” | Collins et al., 2022 [34]Young et al., 2020 [44]Sinha et al., 2018 [46]Masese et al., 2021 [49]Treadwell et al., 2020 [54]Maxwell et al., 1999 [63]Weisberg et al., 2013 [71]Jabour et al., 2019 [77]Matthie et al., 2016 [78] |
| Maladaptive coping strategies | Patient description of maladaptive coping strategies to deal with inadequate care from healthcare providers: managing pain on their ownTurning to illicit substance use as copingNondisclosure habit to providersSelf-discharge from inpatient stays | “I was convinced that the nurse was trying to kill me. I was in a great deal of pain and discharged myself, phoned up my friend to come and get me”“They gave me some tablets every 3 or 4 hours. It doesn’t work like that. So I asked her in the next bed (another SCD patient) if she had something to spare. She brought some tablets from home” | Sinha et al., 2019 [45]Elander et al., 2004 [62]Maxwell et al., 1999 [63]Wickersham et al., 2022 [72] |