The nitty-gritty: cultural and disability competence in health care
To start out, here is an excellent table from the Hendrix paper quoted heavily in the last post, Table 3: EXAMPLES OF CULTURAL VALUES WHICH MAY LEAD TO MISUNDERSTANDING AND MISINTERPRETATION OF BEHAVIOR Prepared by: Levanne R. Hendrix, MSN,RN, GNP, Ph.D.:
I’m sorry these tables are in .gif format, so not as accessible as they could be. I’m not able to transcribe all of the text right now, but please let me know if that would help you, and I’ll gladly do it later!
She adds the usual disclaimers that not everybody from every individual (sub)culture may show all of these traits all the time. Still, they’re things to watch out for.
As you can see, there’s quite a lot of room for “misunderstanding and misinterpretation of behavior” there, which can have some pretty bad results in a medical or (particularly) psych setting. Bev described this sort of thing well in one recent post: By the book: The denial of difference in Alcoholics Anonymous; some of the comments connect this directly to mental health settings. I have experienced some very similar things.
The source of the difference–neurodiversity or culture–doesn’t even matter, from a universalist standpoint:
Here’s what I mean: if I have a universalist orientation, that fact alone can make me insensitive to cultural difference. If I’m universalist, I will tend to believe there’s one set of principles to live by — everywhere in the world. That is a stance that undermines what intercultural sensitivity is all about.
This shows up all over the world when universalists are present. Think of imperialism and colonialism: it’s no accident that the main perpetrators have been nations with largely universalist orientations.
Universalists can be slow to see a need for intercultural consulting, coaching and training. What value could these services possibly add, if things are the same the world over? Or, in a weaker version: if everyone in the world wants the same things?
If everyone is assumed to be perceiving things in the same way, reacting to them in the same manner, expressing the resulting (same) emotions in the same way, while motivated by the same considerations in any given situation–any deviation from the expected pattern may well be interpreted as a sign of poor mental health. This has happened to me, and to family and friends. I’m sure it’s happened to a lot of other people back home.
Sometimes, as in the case of eye contact patterns, personal space needs (including not wanting to be touched without permission), and “flattened affect”, it’s been hard for me to sort out what’s coming from neurodiversity and what’s coming from culture. Not to mention that, as described in the last post, the particular culture in question accepts a wider range of behaviors, so that my variation of them doesn’t really stand out so much.
Then there’s how people are dealt with, after they’ve become patients, and the (different culture, different neurological setup) professionals are even more inclined to interpret behavior and what the person is saying through the lens of presumed disorder. You can probably see some of the ugly ways this might play out, particularly if the patient is responding in an unexpected manner to the kind of “paternalistic or prescriptive behavior patterns”# common among clinicians.
The concepts of ethnocentrism and cultural relativity are considered important in health care delivery to minority clients, however these concepts have seldom been explicated. Contrasting the interpretation of minority client behavior by mainstream and subcultural health professionals provides a powerful example of these concepts, and the importance of minority clients receiving care from professionals who are intimately familiar with subcultural lifestyle patterns…
However, interpretation of the same client behavior depended on the place of origin of the health care professional. Non-Appalachian professionals viewed these data as negative characteristics of Appalachian clients; Appalachian professionals interpreted the same data as positive or neutral adaptations
Another table from the Hendrix paper, Table 4: EXAMPLES OF CULTURALLY MEDIATED COMMUNICATION PATTERNS AFFECTING HEALTH CARE ASSESSMENT:
Just based on these examples, the observation that “opportunities for misunderstandings are maximized” is almost putting it mildly. This misunderstanding may go both ways, but the client is not the one with the power to greatly affect the clinician’s life; the clinician bears more responsibility here.
How can this kind of thing play out? Here’s a composite of some of the misunderstandings and misinterpretations close family members and I (all Appalachian people with a strong Native background) have experienced. Note: though this should not affect how people are treated, we have also all been fairly articulate and reasonably well educated town dwellers. That does not change cultural background, nor should it. It can change perceptions, particularly when dealing with people from more hierarchical cultures. Once the misunderstandings and stereotypes/prejudice kick in, this doesn’t matter; we’re all Stupid Hillbillies/Crazy Savages/you name it. The privilege may resurface and become relevant again if things get to the point of lodging complaints.
As Rednecromancer points out, the standard racist joke applies: “Q: What do you call an Appalachian who has a PhD? A: A Hillbilly”
How to make sure “opportunities for misunderstandings are maximized” (or, how to alienate a client in one office visit), for the clinician:
Make a good first impression. Invade the client’s personal space to force eye contact and make it difficult for them to decline to shake your hand. Form your own opinions based on quickly averted eye contact , “weak” (or reflexively “too forceful”) handshake, and other nonverbal communications.
Who needs formality? Repeatedly call clients by their given names. Bonus points if the client is older than you are, much less elderly. Everyone appreciates persistent signifying (hey, you’re not a telemarketer!) More bonus points if you seem to be looming too close while signifying. Question their personability even more if they draw back from you and get a pained expression when you’re just trying to be friendly. Become offended if they eventually try to make a point by returning the favor, and start calling you “Bob” in every other sentence. Extra super bonus points if the client is elderly, you see “Robert” on his chart, and so you take it upon yourself to call him “Bob” or “Bobby”–without determining whether he goes by Robert at all.
Touch clients unexpectedly, and without permission. Everyone finds this comforting. (Or takes it as a sign of your authority, perhaps both at once.) It’s odd how the person keeps flinching back and using more closed body language. They may start making “better” eye contact, though. It couldn’t be glaring with intent to get you to stop what you’re doing.
Ask for a description of the client’s symptoms, then act sorry you did when it’s not the kind of description you expected. Cut them off and/or dismiss what they’ve said. You may or may not want to ask for any sort of clarification. If they don’t phrase their complaint in the terms you’re expecting, you don’t even have to write it down–even such close matches as “sugar” (diabetes), “high blood”, or “nerves”#. Bonus points if you interpret their use of metaphor/analogy to describe their experiences as poor contact with reality*–extra bonus points if this is in any kind of psych context.
Make no attempt to understand the client’s lifestyle. Blanket suggestions of increased structured exercise are always appropriate, even when the individual is doing a lot of physically demanding work and coming to you over injuries from it. Even when one of the area’s major employers is a chemical plant, an individual being brought into the ER from work could not possibly have been poisoned by nitroglycerin, absent a known heart condition. They must be delusional. Any suggestion that they might know more about their own lifestyle–or responses to previous treatments–than you do can be interpreted as belligerence, noncompliance, manipulation, and possibly grandiosity/delusion/some kind of psych problem.
Similarly, there’s no need to find out the particulars, when you can develop a perfectly good understanding of your client’s life based on your own experience combined with readily available stereotypes. This way you don’t even have to ask them what particular stresses they’re facing, what they’re really eating, how much they drink (if at all), what family and gender roles are in their (sub)culture, and all sorts of other tedious stuff–that makes it so much easier to get right down to business. Observable facts do not have to get in the way of a nice set of preconceptions. For instance, even in an area with multiple universities and few suitable jobs for graduates, it is safe to assume that anyone with a blue-collar or service sector job is neither very educated, nor very bright; surely anyone who is bright and educated wouldn’t continue to live in that horrible place, doing lower-paid work than they could find elsewhere. These clients need things explained on their level (e.g., “I’m a cancer doctor, take this cancer medicine”) and extra guidance (i.e., telling them what to do).
It’s not your client’s place to try to treat ailments themselves, much less consult some kind of so-called “traditional healer”#. Any advice they may have received is bunkum, and liable to do more harm than good; you don’t even need to hear what it was, nor how they’ve been treating the ailment on their own. You must let them know how foolish they’ve been, in the strongest terms, if they mention having done anything like this. If nothing else, they’ll stop telling you about it.
It’s your duty to confront a client you suspect is being less than honest–as indicated by poor eye contact, strange explanations/stories that don’t make sense to you, claims of seemingly bizarre motivations and responses to events or ailments, etc. Many of your clients may seem deceptive a lot of the time, and sugar-coating things is not going to help: they need to face up to it. Who knows why some of them respond so strangely to your pointing out their lies? The flat affect and occasional snarls must be coming from discomfort at being caught out, if they’re not indicative of a deeper mental problem. It couldn’t be that accusations of lying (and stealing) are a very serious matter to some people.
Do not take the client’s complaints about pain seriously.** If they were in that much pain, they would not be able to function as well as they are obviously doing, and everybody knows that it’s important to wait for repeated requests for pain relief in order to weed out those who don’t really need it. If they were really in much pain, they would be expressing it strongly and repeatedly, no matter the social setting; those grimaces do not count. Their apparent functioning level couldn’t have anything to do with an emphasis on carrying on, preferably with some dignity (“what else can a person realistically do if they’ve got a chronic problem?”). This approach to pain is equally applicable to any sort of dodgy-sounding chronic health problem. In extreme cases, ridicule may be appropriate.
The client may have brought along one or more interfering family members to your interview; oddly, even if over 18, the client may even be living with these relatives. They may start badgering you about points the client has already raised, which you do not consider important. They may become insistent. This can demonstrate manipulativeness on the part of the client, the relatives, or both. Dealing and/or living with these people may well be causing a great deal of whatever problems your client might have, besides inhibiting your client’s personal development and mental health. They should be standing on their own two feet by now (no matter how many functional feet the person really has); they could not possibly be helped by the support, disabled or no. You should be forthright in telling them all of this, and possibly insist that you will no longer deal with these interfering relatives. For the client’s good, of course.
By this point, the client’s behavior may have led you to suspect that they are not very intelligent, and are possibly showing symptoms of some kind of mental health problem. Especially if said client is a member of one or more groups known to be not-so-intelligent, backward, ignorant, and prone to inexplicable behavior. You should take charge of the situation, and show strong authority; it’s for their own good, since they’re obviously unable or unwilling to manage things for themselves. Higher levels of condescension and guidance (i.e., directly telling them what to do) could only help. If they don’t seem to be responding well to this approach, it’s a further indication of their inadequacies/mental health problems.
The same applies to inappropriate attempts at humor, frequently self-deprecating. It couldn’t be intended to defuse a tense situation and avoid conflict, but should be taken as a sign of low self esteem, otherwise poor mental health, and/or low intelligence. Also, the situation could not be that bad if people are finding humor in it, and laughing at themselves. If you take a statement seriously, it could not possibly have been intended as humor and/or purposeful absurdity to make a point.
The client’s affect may be becoming flatter and flatter, and they may be slower and even less forthcoming in responding verbally. They may be either refusing eye contact altogether, or showing more of it than earlier in the interview. Their eyes may be looking bulgy, and some facial twitching may be evident–is there a neurological or psych problem you missed?
More behavioral problems may become evident, well into the interview. The person may completely stop responding verbally, they may suddenly start yelling at you (pay no attention to the content), and in either case they might suddenly leave the room. If they do, you should follow them and insist they come back because you’re not finished. They may even inexplicably hit you, after you’ve followed them and put your hands on them to stop them. What further proof of mental imbalance could you require? There’s just no dealing with some people.
If a client does not book and keep regular appointments, as dictated by your treatment plan, you should berate and browbeat them. How else are you going to motivate them to come into the office? If they won’t take responsibility for their health, someone has to guide them (again, i.e., tell them what to do).
Sometimes a client just stops coming to see you; they may not be available on the phone when your office tries to call, or they may say that they will call back to book an appointment. They won’t. There’s just no helping some people, and do they even deserve it?
I could probably go on, but this covers a pretty good assortment of points.
Note that all these misunderstandings are based just on cultural differences. Imagine, if you will, throwing other differences into the mix. Disability doesn’t somehow trump culture; that just leaves you with two (or more) layers of potential for miscommunication and misinterpretation. This can be compounded by stereotypes and expectations of behavior based on the person’s cultural/racial group, so that the clinician doesn’t even see that the person is also disabled, or forms faulty ideas about what kind of condition(s) they really have. Talk about intersectionality.
An all-too-familiar example: what if the person has neurological or developmental differences which affect communication? Having obvious sensory differences–e.g., being deaf or blind–can complicate things enough, and most clinicians are at least aware the person is blind or deaf.
I’m autistic, and usually come across as fairly “high functioning”. I’m pretty good at picking up social scripts, with sufficient exposure, which is a good thing coming from a high-context society. Then I get into a (low-context) medical setting. Medical environments are very confusing and overloading just from a sensory perspective, and my auditory processing (among other things) suffers in a way that I may as well be considered hard of hearing. So does my expressive language ability, especially speech; I’m doing pretty well if I can come up with a script in advance, and still need someone to go with me and make sure everything critical gets said and heard. Otherwise, I can get flustered enough that I can’t even get across the main reason I am there–even something as clear as a migraine or asthma exascerbation–much less figure out half the clinicians’ responses to what I do manage to say.
My coping ability breaks down remarkably when the expected scripts are not the same at all, because of cultural differences. It also gets even more interesting when the clinician does not stay close to any anticipated pattern of interaction, and/or gets frustrated enough to start using overt bullying tactics–one side of those “paternalistic or prescriptive behavior patterns” mentioned earlier. The more they misunderstand and respond in accordance with their perceived superiority and authority, the less able I am to talk. The silencing is literal.
I have lost all ability to communicate verbally under these circumstances. Especially when I was younger, I had screaming, head-banging meltdowns, then could not communicate afterward (one time for several days, in the hospital under the continuing sensory barrage and shoddy treatment). I was glad to find/figure out what was causing those seemingly bizarre experiences. It can still be humiliating and frustrating.. I used to blame myself for all this, and people close to me would get frustrated and assume I could handle situations better if I tried harder. In short, I really cannot, not without a good bit of support.
You can probably imagine how that kind of thing can be interpreted, when it hadn’t even occurred to anyone that I might be autistic. Throw in a history of some serious medical problems (some iatrogenic), some outright abuse in medical settings because of my odd behavior, some very strange interpretations–and it’s not hard to see why a person might develop medical-related PTSD. It’s also not hard to see how this might cause further misunderstandings–and assumptions that you’re either deranged or purposely being difficult, if not both. Why might someone become “noncompliant”, and really not want to put themselves into that kind of situation?
Personally, I have been unable to object to being given the wrong medication. (Whether they’d have listened to me´anyway is another matter.) I have not been able to ask for pain relief after major orthopedic surgery at all, nor for something to drink or help getting to the bathroom; my mom had to try to figure out what I needed and when from nonverbal cues, with the kind of varying success you’d expect. Just a couple of years ago, I almost kneecapped myself, and the 4-hour ER wait–while vomiting from pain–scrambled my brain to the point that I left there with my ankle wrapped up, no crutches, and no pain relief whatsoever.*** Given the difficulty of “voting with your feet” under the NHS, I saw very little choice but to keep trying to deal with a multiply bigoted GP who dismissed every word I managed to get out of my mouth, usually with nobody to go along and interpret. I still doubt that anyone who hasn’t experienced similar themselves would believe some of the ways medical personnel have treated me when I could not communicate well, if at all. Still, I’ve been fairly lucky that none of it has been as serious as it could well have been.
The consequences of poorly understood cultural differences can be dangerous enough on their own. Throw in further barriers to communication, and it’s almost a geometric progression. Besides all the suffering, this kind of thing can kill.
* I have to throw in one example I can’t find a reference for right now, not from personal experience. A Nigerian man went into an ER in the U.S., complaining that it felt like the Devil was grabbing him by the chest. Now, I’d think of chest pain straight off, but would ask him to clarify to make sure I understood what he was talking about. Staff response in this case? They called for a psych consult, and let him die of a heart attack in the meantime. My mom’s use of analogy to describe her pain helped get her dismissed as a crazy drunkard in the ER, though she didn’t drink; she went home with untreated broken ribs and still-undiagnosed cancer. Those examples weren’t even in explicit psych settings. This is a very dangerous kind of misunderstanding.
** From Hendrix:
Chronic Pain Management. Many traditional AI/AN were taught to withstand pain as a skill for survival. Overt expression of pain (verbal or non-verbal) is unacceptable in many AI cultures today. Older AI/AN may be less likely to ask for pain medication and more likely to use internal resources to manage pain (Hendrix, 2001b). AI/AN are also generally undertreated for chronic and acute pain. A request for assistance may not be repeated, or may be told to a family member who will relay the request (Kramer, 1996).
A lot of people I know, including myself, receive precious little treatment for even acute pain. My mother’s years of pain from bone cancer was not expressed in a way doctors understood, so was dismissed until she physically collapsed multiple times. My take is a little different, having more to do with “different expression” than “little/no expression”. Hendrix’s interpretation smacks a little heavily of the old “impervious to cold” misconception. Just because you consider it rude to keep pissing and moaning about being cold–especially when there’s not much obviously to be done about it, or when you didn’t wear heavy enough clothes but are not in imminent danger of hypothermia or frostbite–doesn’t mean that you don’t feel it, and aren’t expressing your displeasure in a culturally acceptable way. People within the same culture will know full well that you’re cold. Or in serious pain. A person is also likely to stop asking for pain relief/other treatment if they have been dismissed, and help has not been forthcoming; dignity plays in here, too.
Edit: The “Related Posts” thing turned up another that really is relevant: Mathia Lee’s Don’t ignore pain, get treated early, aimed at people from Asian cultures: “the ability to tolerate pain within whining and seeking much attention is a virtue, but one that is working against people’s health these days…When you’re young and antibiotics are not available, and what you have is an infection, the Asian virtue of not whining over small things is useful. There simply wasn’t anything that could be done if you whined! Stop making a mountain out of a molehill was sensible good advice.” A very familiar approach. This seems to be aimed at people currently living in Asia, and not as cultural minorities, so presumably avoids a lot of the misunderstandings I’ve written about here.
*** This was Christmas Eve, in a truly crappy hospital. Barking, Havering and Redbridge Hospitals NHS Trust’s Accident & Emergency departments were ranked 150/151 in the country on pain relief, 151/151 for health care standards, 151/151 on general patient satisfaction. Taken in the context of A&E patients often left in pain, survey shows, I probably wouldn’t have gotten adequate pain relief even if I’d been able to talk to them: “Only 59% of patients thought staff did everything they could to help control pain and 27% said they did to some extent. But 14% said the staff did not try.”–and that’s for all hospitals in England, not ours ranked 150/151 for pain relief! On the ward itself, Nigel had to ask three times before anybody would give him a basin for me to throw up in (from the pain)–and that was after he’d appropriated a trash can. I really wanted out of that place, I tell you what, and would have left earlier if they hadn’t repeatedly said they were bringing pain relief.
In this case, it was very lucky that (a) weak codeine formulations are available here without a prescription, (b) the major pharmacy chain was open the day after Christmas, and (c) I had a cane already, and managed to gimp out to the bus stop. That was still more than a day after the injury, with two nights not really sleeping. It was a hairline fracture of the patella, for goodness’ sake.