# data[].attributes.attachment_link.readable_text
Sometimes the best treatment is a doctor who listens.
How we see the world shapes who we choose to be - and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
As someone with a chronic illness, I shouldn't have to advocate for myself when I'm at my most ill. Is it too much to expect doctors to believe the words that I have to force out, amidst spikes of pain, after I've dragged myself to the emergency room? Yet so often I've found that doctors only look at my patient history and actively ignore most of what I've said.

I have fibromyalgia, a condition that causes chronic pain and fatigue, along with a laundry list of associated conditions. Once, I went to a rheumatologist - a specialist in autoimmune and systemic musculoskeletal diseases - to try to better manage my condition.

He suggested I try water exercises, as low-impact exercise has been shown to improve fibromyalgia symptoms. I tried to explain the many reasons why I can't go to the pool: It's too expensive, it takes too much energy just getting in and out of a bathing suit, I react badly to the chlorine.

He brushed each objection aside and didn't listen when I tried to describe access barriers to water exercise. My lived experience in my body was seen as less valuable than his medical degree. I left the office crying in frustration. Moreover, he didn't actually offer any useful advice to improve my situation.

I have treatment-resistant bipolar disorder. I don't tolerate selective serotonin reuptake inhibitors (SSRIs), the first-line treatment for depression. As with many with bipolar disorder, SSRIs make me manic and increase suicidal thoughts. Yet doctors have repeatedly ignored my warnings and prescribed them anyway, because maybe I just haven't found the "right" SSRI yet.

If I refuse, they label me noncompliant.

So, I end up either in conflict with my provider or taking a medication that inevitably worsens my condition. On top of that, the increase in suicidal thoughts has often landed me in the hospital. Sometimes, I also have to convince the doctors in the hospital that no, I can't take any SSRIs. It's landed me in a weird space sometimes - fighting for my rights when I also don't necessarily care whether or not I live.

"No matter the amount of work I do on my intrinsic value and my being the expert on what I feel, being unheard, ignored, and doubted by a professional who society holds as the ultimate arbiter of health knowledge has a way of destabilizing my self-worth and trust in my own experience."
- Liz Droge-Young

These days, I prefer to be labelled noncompliant rather than risk my life taking a medication I know is bad for me. Yet it's not easy to just convince doctors that I know what I'm talking about. It's assumed that I've been using Google too much, or that I'm "malingering" and making up my symptoms.

How can I convince doctors that I'm an informed patient who knows what's happening with my body, and just want a partner in treatment rather than a dictator?

"I have had innumerable experiences of doctors not listening to me. When I think about being a black woman of Jewish ancestry, the most prevalent problem I have is doctors discounting the probability of me having a disease that is statistically less common in African Americans."
- Melanie

For years, I thought the problem was me. I thought if I could just find the right combination of words, then doctors would understand and provide me with the treatment I needed. However, in swapping stories with other chronically ill people, I've realized that there's also a systemic problem in medicine: Doctors often don't listen to their patients.

Worse yet, sometimes they just don't believe our lived experiences.

Briar Thorn, a disabled activist, describes how their experiences with doctors affected their ability to get medical care. "I was terrified of going to doctors after spending 15 years getting blamed for my symptoms by being fat or being told I was imagining it. I only went to the ER for emergency situations and didn't see any other doctors again until I became too sick to function a few months before I turned 26. This turned out to be myalgic encephalomyelitis."

When doctors routinely doubt your lived experiences, it can affect how you view yourself. Liz Droge-Young, a disabled writer, explains, "No matter the amount of work I do on my intrinsic value and my being the expert on what I feel, being unheard, ignored, and doubted by a professional who society holds as the ultimate arbiter of health knowledge has a way of destabilizing my self-worth and trust in my own experience."

Melanie, a disabled activist and creator of the chronic illness music festival #Chrillfest, speaks about the practical implications of bias in medicine. "I have had innumerable experiences of doctors not listening to me. When I think about being a black woman of Jewish ancestry, the most prevalent problem I have is doctors discounting the probability of me having a disease that is statistically less common in African Americans."

The systemic issues Melanie experiences have also been described by other marginalized people. People of size and women have spoken about their difficulty receiving medical care. There's current legislation proposed to allow doctors to refuse to treat transgender patients.

Recent studies have shown that doctors prescribe less pain medication for black patients versus white patients with the same condition. Studies have shown doctors often hold outdated and racist beliefs about black patients. This can lead to life-threatening experiences when doctors are more likely to believe a racist construct than their black patients.

Serena Williams' recent harrowing experience with childbirth further demonstrates the all too common bias black women face in medical situations: misogynoir, or the combined effects of racism and sexism towards black women. She had to ask repeatedly for an ultrasound after childbirth. At first, doctors brushed off Williams' concerns but eventually an ultrasound showed life-threatening blood clots. If Williams hadn't been able to convince doctors to listen to her, she may have died.

While it's taken me over a decade to finally develop a compassionate care team, there are still specialties in which I don't have a doctor who I can turn to.

Still, I'm lucky in that I've finally found doctors who want to be partners in care. The doctors on my team aren't threatened when I express my needs and opinions. They recognize that while they're the experts in medicine, I'm the expert on my own body.

For example, I recently brought up research about an off-label non-opioid pain medication to my GP. Unlike other doctors who refuse to listen to patient suggestions, my GP considered my idea rather than feeling attacked. She read the research and agreed it was a promising course of treatment. The medication has substantially improved my quality of life.

This should be the baseline of all medical care, yet it's so incredibly rare.

There's something rotten in the state of medicine, and the solution is right in front of us: Doctors need to listen to patients more - and believe us. Let us be active contributors to our medical care, and we'll all have a better outcome.
Liz Moore is a chronically ill and neurodivergent disability rights activist and writer. They live on their couch on stolen Piscataway-Conoy land in the D.C. metro area. You can find them on Twitter, or read more of their work at liminalnest.wordpress.com.

# data[].attributes.attachment_link.title
I'm an Expert on My Own Body - So Why Aren't Doctors Listening?

# data[].attributes.attachment_link.description
Is it too much to expect doctors to believe the words that I have to force out, amidst spikes of pain, after I've dragged myself to the emergency room? Yet so often I've found that doctors only look at my patient history and actively ignore most of what I've said.

# data[].attributes.headline
Challenging Nurses’ Cultural Competence of Disability to Improve Interpersonal Interactions

# data[].attributes.subject
Challenging Nurses’ Cultural Competence of Disability to Improve Interpersonal Interactions

# data[].attributes.body
Roscigno, Cecelia I.

Journal of Neuroscience Nursing:
February 2013 - Volume 45 - Issue 1 - p 21-37

doi: 10.1097/JNN.0b013e318275b23b

# data[].attributes.attachment_link.readable_text
J Neurosci Nurs. Author manuscript; available in PMC 2014 Feb 1.

Published in final edited form as:

Abstract

Worldwide, at least 6.9 billion people have an impairment producing health condition (IPHC). Insensitive encounters with health care providers (HCPs) can result in negative appraisals, fear, and avoidance, but little is known about what things are commonly perceived as insensitive. A review of published narratives describing negative encounters with HCPs was conducted. Narrative analysis was used to compare, contrast, and synthesize six themes describing the common negative encounters: (a) ignoring or minimizing their knowledge; (b) detached interpersonal interactions; (c) placing a negative skew on their life quality; (d) a lack of HCP knowledge related to their complete needs; (e) assuming they should be asexual and childless; and, (f) an inherent power differential. The medical model of disability is perceived by individuals with IPHCs to inform negative encounters perceived as insensitive. This preliminary knowledge is important so we can address education needs, plan future research questions, and establish clinical practice improvements.

Based on the most recent world estimates, about 6.9 billion people are living with some degree of an impairment producing health condition (IPHC) that can place them at risk for varying degrees of disability. This statistic is projected to grow exponentially in upcoming years due to population growth, the ageing of a large segment of the overall population, and continued medical advances that preserve and prolong life ( World Health Organization, 2011). Despite efforts to improve the live quality of persons with IPHCs, several social disparities continue ( Panko Reis, Breslin, Iezzoni, & Kirschner, 2004; Patja, Mölsä, & Iivanainen, 2001; World Health Organization, 2011).

Many health care providers (HCPs) conceive of disability as biologically inherent to IPHCs (the medical model of disability), but others have pointed out that identity categories like 'able-bodied' and 'disabled,' 'normal' and 'abnormal' are socially constructed labels, which by "way of legal, medical, political, cultural and literary narratives" can also compose exclusionary categories for those labeled, subsequently positioning them in a social minority group (the social model of disability) ( Garland Thomson, 1997, p. 6). Gill (2006) argued that repeated negative encounters with HCPs explains why some persons with IPHCs fear, dread, or choose to forego seeking medical care. The notion that HCPs might at times play a role in constructing the vulnerability of persons with IPHCs is not typically acknowledged ( Gill, 2006). Instead, there is an assumption that the nurse-patient relationship is caring and results in enhanced personhood for both parties ( Brencick & Webster, 2000).

In the last decade, the Institute of Medicine (2001) has called for measures aimed at improving the quality of interactions with patients and their family. The American Association of Colleges of Nursing has responded to this need by calling for a nursing curriculum at all levels of nursing education to cover cultural competence, including cultural competence in the care of persons with disabilities ( American Academy of Colleges of Nursing, 2010). Neuroscience nurses are one of the most likely HCPs to interact with this population at some point in their care. The purpose of this narrative review and synthesis was to gain a preliminary understanding of commonly perceived negative interactions between persons with IPHCs and their HCPs to initially inform more culturally sensitive care. The questions asked were: 1) what are the common types of negative encounters that persons with various IPHCs describe in their experiences interacting with HCPs; and, 2) what are the common explanations given for such negative interactions? This knowledge is important so we can begin to address the needs within nursing education, drive research questions, and improve cultural sensitivity in practice.

Methods

Design

This review and synthesis of first person narratives involved the following steps: a) identification of a broad source of published literature; b) appraisal of the narrative sources to decipher whether narrative data contained within articles met the aim of this review; c) comparing, contrasting, and coalescing narrative data to inductively inform the conceptualization of the themes; and e) recognition of the limitations of this approach in the final synthesis ( Walsh & Downe, 2005).

The author first conducted a literature search between October 2009-February 2010 in Medline, CINHAL, and Social Sciences Citation Index, cross indexing variations of three basic text phrases: qualitative AND experience or experiences AND disability or disabilities. The only limitations were that articles were in the English language, published between 1990 and 2009, and contained first-person exemplars describing appraisals of negative encounters with HCPs. This broad search approach resulted in many articles that were not relevant to this review or were duplicates between databases. It was decided, however, that it was the only way to minimize arbitrarily limiting relevant articles (e.g., where negative interactions with HCPs was not the main purpose, but was discussed as a problem by the participants). Articles were evaluated to locate reports where narrative data describing negative experiences with HCPs was either the primary purpose or was a portion of what the participants' discussed in their entire experiences.

The number of relevant research articles recovered the initial search in Medline was low ( n = 11) so the investigator then searched amongst a broad range of IPHCs common to neuroscience nursing (brain injury, stroke, multiple sclerosis, cerebral palsy, etc.) adding the cross index terms: qualitative and experience or experiences (an additional n = 34 for a total of 45 research articles). A librarian was consulted to assure that the search terms and data bases searched represented a reasonable approach. The author then also searched the narratives of memoirs ( n = 3), published position papers containing first-person experiences from persons focusing on disability issues ( n = 2), research published in books ( n = 2); or films asking persons with IPHCs about their HCP encounters ( n = 1). There was no systematic way to search for these alternative sources, so the author had to rely on sources already known by the author through coursework taken in a local disability studies program or referred by other disability ethics clinicians. These sources were used to further enrich the final synthesis by positioning an alternative perspective to also have input ( Noblit & Hare, 1988; Walsh & Downe, 2005).

Analysis

A descriptive narrative approach was used. Descriptive narrative analysis is a rigorous, critical, and systematic way of investigating narrative accounts of people. A fundamental characteristic of this approach is the belief that personal realities are expressed in the stories a person tells about their daily life ( Patton, 2002). Narratives from the same study or same author's personal experiences were considered as one source. Narrative data were hand coded, synthesized by the author and then inductively defined into themes from across the culmination of extracted narratives. The method, examples, and thematic summary was shared with two other qualitative researchers and then shared amongst a multidisciplinary group participating in a disability ethics fellowship at a rehabilitation hospital for feedback. External peer input helped keep the investigative process from being linear and having the author's input alone ( Walsh & Downe, 2005).

Results

Six themes of negative encounters included: a) ignoring or minimizing their knowledge; b) detached interpersonal interactions; c) placing a negative skew on their life quality; d) a lack of HCP knowledge related to their complete needs; e) assuming they should be asexual and childless; and, f) an inherent power differential. Table 1 presents the resources used for this review and synthesis, describes the type of resource, whether the findings were a primary aim or a secondary finding, the health condition or conditions examined, and the themes supported by that resource. Exemplars were selected to illustrate each theme or subtheme in the text. The fact that this author also chose to use narratives from the non-research sources in addition to the research sources ultimately helped to enrich the final understanding of each theme because these narratives gave more detail about the individual's experience and appraisal, which allowed for a deeper understanding of the themes. It also illustrated that research data is building in recent years to support the claims made for years by disability rights advocates.

Table 1

CITATION

RESOURCE TYPE

PRIMARY AIM OR SECONDARY FINDING

HEALTH CONDITION(S) DISCUSSED

THEMES INFORMED

Iezzoni & O'Day (2006)
Book (research): descriptive qualitative from survey and focus group data

Primary: health care access and quality

Persons with multiple types of physical and sensory impairments

Ignoring or minimizing their knowledge

Detached interpersonal Interactions

Placing a negative skew on their life quality

A lack of HCP knowledge related to their complete needs

Assuming they should be asexual and childless

An inherent power differential

Kroll & Neri (2003) and Neri & Kroll (2003)¥

Research: descriptive qualitative from telephone interviews

Primary aim (care coordination experiences)

Persons with cerebral palsy, multiple sclerosis, and spinal cord injury

McBryde Johnson (2005) and McBryde Johnson (N. D.)¥

Memoir and position paper with personal narrative

Narrative personal experiences and argument for broader considerations of disability

Persons with congenital neuromuscular disease

Ignoring or Minimizing their Knowledge

This theme centered on a perceived lack of respect for the individual with the IPHC having experience and expertise with their body and the HCPs' dismissal of their subjective input. Subthemes ranged from getting an accurate diagnosis, to giving them appropriate treatment based on their input, and in general realizing that their cognitive capacities to provide information might not be affected simply because of their initial IPHC.

Getting an accurate diagnosis

This subtheme mostly centered on conditions that are difficult to diagnose from objective information and may result in questioning the authenticity of the individual's reports:

I just remember, even...it was just an intuitive...it was just a thought of mine, could this be, have anything to do with my car accident. And he [general practitioner], instead of saying "Gosh, you know, let's...let's think about that," he said "No, it couldn't. That was too long ago" ( Sample & Darragh, 1998, p. 862).

Giving them the appropriate treatment based on their input

Individuals often discussed their expertise after experiencing multiple interactions with various HCPs in various clinical settings, but they felt that their insight and experiential input was not valued and often outright ignored. The following woman with a neurodegenerative condition was about to have surgery and attempted to educate those who would be caring for her on her unique handling and transfer needs, but she felt that the HCPs didn't respect her input and did exactly what she was concerned they would do, which put her at risk for an serious injury and showed a lack of respect for her dignity and psychological well-being:

I explain coolly that I can get hurt if handled the wrong way... .I want one of my people to do it.....The next thing I know, I'm being grabbed by two women in shower caps. One has my knees and the other is scooping up my shoulders. It's the wrong lift. All my weight will hang from two sets of fragile joints. My curvy spine will dangle unsupported, putting the spinal cord and that bundle of nerves at risk. In a microsecond of terror I see the whole calamity. I mouth the word "Stop !" I'm despairing. They won't even notice. They won't understand. But one of them notices. Stops. Looks. "Are you saying "Stop"?" I nod my head. "We're just going to put you in this bed and then we'll be done." "No," I mouth. "No." "You don't want us to move you? We'll be careful. It'll just take a second"... . And a second is all it takes. A second in which panic sends my mind out of my body, as abused minds are said to flee when denied control over abused bodies, to look down at what seems like a pale shriveled corpse being tossed like trash from one place to another... . What silenced me was not voicelessness, but being in a place where what I said and what I wanted didn't matter (McBryde Johnson, N.D., para 2).

All aspects of their cognitive capacities might not be affected

Situations where persons with an IPHC later developed a secondary condition was perceived to set them up to be ignored because they believed the HCP thought they were likely just seeking attention. How this type of treatment affected them personally was perceived not to be considered by the HCP:

My first mastectomy was when I was 'in care.' Complaints to the doctor about lumps in my breasts were dismissed as being neurotic! The [residential] unit's doctor was extremely condescending and patronizing....I had a biopsy done, and was sent back for the result by myself. The verdict came as a shock, I had to have my breast off the next day ( Thomas, 2001, p. 253).

Detached Interpersonal Interactions

Many described a history of demeaning interactions where they felt objectified by some HCPs. Their history likely influences their sensitivity to evaluating subsequent interactions with HCPs. The culmination of such interactions can leave persons with IPHCs feeling as if they are viewed as less than human:

Many adults with [spina bifida and in this support group] can remember things such as being paraded naked in front of medical professionals in auditorium-type settings, painful medical procedures being done without explanation, compassion, support systems present or informed consent ( van Daalen-Smith, 2006, p. 266).

It was when I wanted to go to the toilet. And I couldn't manage at all. And I asked. [She said] "No, you've just been to the toilet." But, oh dear, I'll do it in my pants, I said. So she said: "Well I couldn't care less." So I complained 'bout her straight away. I cried, couldn't stand being here ( Mangset, Tor Erling, Forde, & Wyller, 2008, p. 828).

Placing a Negative Skew on their Life Quality

While individuals expressed daily difficulties dealing with effects of their IPHC, they also discussed positive aspects of their life and countered that others, especially HCPs, should not assume what it means to live with an IPHC. Individuals wanted to be seen holistically for their many unique and positive attributes and their similarities to all other persons and not just their IPHC:

Most expressed surprise that I had a job, let alone a job as a professor who could teach people things. They were also surprised to learn that I lived in my own home, was married, and had young grandchildren. On their own, they could not conceive of my life being ordinary or lived outside of a healthcare facility... . They were trying to fit both my physical condition and the fullness of my world into their narrow conception of life with a disability. Most could not reconcile the two domains ( Gill, 2006, p. 185).

A Lack of HCP Knowledge Related to their Complete Needs

Individuals often contested the one-size-fits-all approaches they experienced. They wanted HCPs to consider them holistically when figuring out recommendations and they wanted HCPs to include them in conversations about them and not talk 'over them' if they had an advocate present:

They used to ask my mum or dad. Then they asked me after, but first of all it used to be my mum or dad [even when I was an adult].....I was the one having the operations. [It made me] feel like I'm not there, just I'm there, but, 'oh, well, he can't understand' ( Hart, 1998, p. 475).

A large number of narratives addressed the sense that HCPs did not have adequate knowledge to assist individuals appropriately according to how their needs were the same or differed. Individuals often perceived that some HCPs did not want to learn and they perceived that the responsibility for teaching HCPs was theirs' and had to be repeated over and over with each new HCP encounter. Many found this responsibility daunting:

They made me leave my hearing aids with my mother. Afterwards, they told me, "You took a long time to come out of anesthesia. We kept talking to you." But I couldn't hear them! There was no way for me to understand what was going on and get pulled out of anesthesia. It's very scary ( Iezzoni, O'Day, Killeen, & Harker, 2004, p. 360).

[As a child] I had to go to physical therapy a lot, but I hated it. No one could explain to me why it was important and so I was smart enough to just like blow it off [laughs]. You know, 'cause it didn't seem like it was any big deal. I think teaching and talking, interacting with the child and the parent at the same time, but always keeping the parent involved... . [What is important is] respect more than anything just respecting that child's knowledge about their body and giving them that power to understand what's going on with their body and understand the consequences ( Savage, 2003).

Assuming they should be Asexual and Childless

Individuals described many HCPs' as displaying discomfort regarding his or her sexual, reproductive, or family-planning needs, which resulted in an information barrier or stymied their access to appropriate care:

So I went to see her [nurse] and wanting to ask really about the sexual function [following Spinal Cord Injury] and you know can I have an orgasm, can I have sex, what do you do, she was just telling me all about fertility... ( Samuel, Moses, North, Smith, & Thorne, 2007, p. 761).

When I was pregnant... .My obstetrician called an urologist to consult about the best way to treat these [urinary tract] infections. When my OB told the urologist that I'm quadriplegic, he said, "She's what, and she's having a baby? What is she doing? Why is she doing this?"... That urologist had the typical perception of disability, of people nonfunctioning, not working, staying home. Once he met me, he said, "This baby is wonderful! It's a great thing" and now he's my urologist. It's amazing how people's perceptions of disability can change once they get to know you as a person and get rid of their old conceptions ( Iezzoni & O'Day, 2006, pp. 67-68).

This theme had fewer resources expressing this as a problem, but this could also be explained by the underlying problem expressed within the individual's narratives. For instance, if sexuality and child bearing are not seen as a need for this population, then they may also not be seen as a problem to be researched. Individuals themselves may also have discomfort with raising this topic, if not asked specifically about the issues they face and the needs they have. Discussions of sexuality and sex are often culturally uncomfortable topics for many people, making it plausible that both sides would avoid, hoping the other will take the lead in starting the discussion.

An Inherent Power Differential

HCPs were perceived to wield a great deal of power and individuals believed that the health care systems were often set up to position the needs of the HCPs in the forefront versus the needs of patients or families:

Doctors are just people-some are great and some are awful. The problem is that the ones who are awful can still exercise a disproportionate amount of power....Some doctors seem to have a problem dealing with patients whose condition is difficult or impossible to treat. I can empathize with that. But some of them deal with it by projecting their negative emotions onto the patient, and that too is an abuse of power. Plus it only takes a word, a nod, a wink for some doctors to convince others that their patient is just a troublemaker who should be got rid of as quickly and expeditiously as possible, another abuse of power. Most patients seem to see themselves as dependent on doctors. Even if you want to take control and responsibility for your health-or perhaps especially if you want to -it seems to suit most doctors to keep their patients subservient ( Thomas, 2001, p. 257).

When they come at 6:45 am, I say: "Nurse, I'm not getting up yet, I did not sleep well and I'm tired. Just let me stay in bed a little bit longer" and if you get the wrong one "Come on, get up, you have to get washed" ( Proot, Crebolder, Abu-Saad, Macor, & Ter Meulen, 2000, p. 280).

Discussion

Underlying the negative interactions described from this synthesis is a common perception by individuals with IPHCs that they are seen as lacking any knowledge or expertise that might contribute to an improved understanding about their condition, care, or factors affecting their life quality. They believe that their expectations for quality health care and a life with quality are seen by some HCPs as improbable or not a reasonable goal for this population. They find it disparaging to deal with the negative attitudes and beliefs of some HCPs, whom they expect to be most caring and understanding of their complete needs due to their inside knowledge and frequent contact. The narratives captured, illustrated that they often perceived that it was HCPs' cultural attitudes and beliefs about the drain of persons with IPHCs on society and the negative value of their lives, which explained the insensitive encounters they experienced.

Cultures

While culture is often assumed to be associated with a person's ethnicity or a particular geographic region, Tylor (1920) posited the notion of culture to comprise a broader definition "the complex whole, which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man as a member of society" (p. 410). Tylor describes a socio-cultural system of understanding, interacting, and sharing information. That system can be the broader society (macro-system) or be a smaller systems (micro-system) within a society (i.e., medical science, religions, a work environment, etc.) and each system has their own system of symbols to view the same thing. Depending on the knowledge, beliefs, customs, laws, and depictions of IPHCs (cultural factors) that a given group has been exposed to and has focused on as contributing meaning to life quality, they may come to completely different conclusions about the meaning of living with an IPHC (e.g., HCPs versus persons with IPHCs). Through this complex interpretive appraisal, cultural clashes can be acknowledged as potentially explaining negative encounters at times between persons with IPHCs and HCPs ( Philipsen, 1997).

Clashing of Cultures

The experiences of persons with IPHCs can vary drastically by geography and political factors. In developed countries, persons with IPHCs may be primarily fighting for access to care and more patient-centered care, but in less developed countries persons with IPHCs may be instead fighting for more basic human rights ( Barnes, 1997; World Health Organization, 2011). Contrary to Nathenson's (2009) statement that "people with disabilities have a distinct culture of shared experiences and healthcare needs" (p. 92), I would caution that there are as many differences in individuals' experiences, beliefs, and needs as there are any similarities ( Miles, 2000; Swain & French, 2000; World Health Organization, 2011).

Within the overall group of persons with IPHCs, there are many subgroups, some of whom are even more marginalized than others (i.e., those with intellectual or communicative abilities). In addition, individuals may infer different meaning of his or her IPHC due to their unique personal, spiritual, or other socio-cultural or demographic factors. To say that there is one universal culture minimizes the spectrum of different abilities, their distinct experiential components, and the intersection of other personal and social factors (age, ethnicity, race, economic status, demographics, societal culture, gender, sexuality, politics, and educational status), which can also be components of how persons are able to experience life, make meaning of their experiences, and voice their needs ( World Health Organization, 2011).

What individuals with various IPHCs share is a need to be treated with dignity and as a valued part of their community and society, which are human needs not disability needs. Humanness or personhood are social constructs unconsciously applied to those individuals we believe are like us and taken away or minimized in those who we believe are different from us ( Haslam, 2006). A lesser degree of humanness has historically been attributed to persons with many IPHCs.

Historical Influences on Constructions of Disability

There have been many laws, policies, or social actions that have served to oppress persons with various IPHCs, including social exclusion, institutionalization, experimentation, sterilization, infanticide, and euthanasia ( Barnes, 1997). These policies, laws, and actions were based on fears of 'differences' and a drain on society due to their IPHC. While recent laws have attempted to improve the social conditions for persons with IPHCs, laws do not typically change attitudinal barriers.

Attitudinal barriers can be much more persistent in continuing to present obstacles and disparities such as in jobs, education, housing, social inclusion, healthcare access or treatment ( World Health Organization, 2011). The medical model of disability has been a driving force on how the public has understood disability ( Polsky, Willke, Scott, Schulman, & Glick, 2001; Sackett & Torrance, 1978; Ubel et al., 2001; Ubel, Loewenstein, & Jepson, 2003). Evidence is mounting that HCPs' attitudes and beliefs affects their judgments and interactions related to persons with various IPHCs ( Janvier, Leblanc, & Barrington, 2008a, 2008b; Kelly, Brillante, Kushner, Gehron Robey, & Collins, 2005; Oei, Askie, Tobiansky, Liu, 2000; ten Klooster, Dannenberg, Taal, Burger, & Rasker, 2009). What is revealed from this synthesis is a need to espouse cultural humility and cultural competence at all levels of learning and practice for all HCPs, in order to improve interactions.

Cultural humility speaks to our responsibility to provide patient and family interactions that are culturally sensitive and relevant ( Tervalon & Murray-Garcia, 1998). Even with cultural competence training, however, HCPs may inadvertently detach ("they are not like me") and focus more on their disciplinary knowledge (i.e., objectivity and evidence based medicine) and assume a greater expertise of living with the IPHCs. HCPs may minimize or ignore the barriers they or the health care system can create ( Foster, 2009). Thus, humility for and caring about the other's perspective and the broader socio-cultural realities affecting their everyday life can be lacking. This is what Swanson (1993) called the knowing component of caring and understanding the individual and broader sociocultural realities is important so nurses do not make assumptions for the other. Otherwise, there can be situations in which persons with IPHCs may "feel taken over, spoken for, undermined, disempowered or even neglected and abused" by those who believe they are caring ( Shakespeare, 2006; Wadensten & Ahlstrom, 2009). Considering how the individual, their family, school or work, their neighborhood, their broader community, laws, policies, and societal beliefs all interact with each other to affect the individual's experiences and meaning, will help us put disabilities in context ( Bronfenbrenner, 1977).

Limitations

This narrative synthesis could have excluded important information due to the databases excluded, the secondary extraction of data, which is limited by what the original investigator chose to present (or not present), and the inability to assure saturation of all themes. These factors together limit the external validity of the themes found from this synthesis. Yet, others argue that secondary analyses can still give important preliminary insights into a topic, which can later be tested ( Thorne, 1993). The inclusion of literature that was not research-based could be criticized by some as biasing the findings, but others argue that considering alternative sources can enriched the final understanding ( Noblit & Hare, 1988). In a population whose point of view has been historically marginalized, the author believed this approach was warranted. Rather than generalizing the findings from this review and synthesis, the findings make a case for considering HCPs roles in the construction of the meaning of disability in future research. Clinicians can also use it to begin to understand interactions from another point of view.

Implications

To provide culturally competent care, nursing leaders need to challenge students and all practicing clinicians with opportunities to reflect on their beliefs, learn, and practice and apply their new cultural skills ( Campinha-Bacote, 1999). Table 2 presents some key things that individuals and organizations should consider to improve the setting and nature of future interactions with persons with IPHCs. Leaders need to ensure that the environment they work within and serve patients within does not create any physical or cultural barriers. Nursing educators and authors should be more cognizant of discussing the broader socio-cultural realities encountered by individuals with IPHCs and their family members, and not only the biophysical changes and treatments ( Hahn, 2003). Finally, more research is needed on HCPs beliefs and the effect they can have on practice. By considering more subjective input from the patients we serve, they will more fully inform the services we provide and the theories we construct. These initial steps will address social barriers currently overlooked. Providing critical thinking opportunities and challenging HCPs' clinical interpersonal skills at all levels of practice will improve the future quality of interpersonal care delivered to persons with IPHCs.

Table 2

Concept

Suggestions

Reflection

Critically evaluate your:
Knowledge Attitudes and Beliefs: Expectations:

Learn

Practice and Apply

Respect their privacy, personal space, and personal dignity. Ask permission before doing anything and explain what you are doing. Monitor their physical and emotional responses and adjust your approach if necessary.

Talk directly to the person and not just their caregiver or family. Acknowledge persons with intellectual disability as you would any other person and do not talk over them as if they are not there.

Do not expect or assume their caregiver/family will be responsible for their needs when they are in your care. Ask how they would like to be involved and check in on them.

Ask for input on their care as appropriate. Make sure they have assistive aids when and where they need them, do not send them home. Communicate their needs when they go to other places or for procedures.

Ask the person (or their caregiver) to tell you about their personal life and the things that are important to the individual and the family. Incorporate these things into their care plan.

Make sure the information (verbal or written supplementary) and the interventions you develop for patients/family members are relevant to their needs and not generic.

Look for cues to how the setting or staff behaviors have affected the person or family member and honestly acknowledge when you have made an assumption or mistake.

Challenge your peers on beliefs or behaviors that could create cultural or physical barriers to patients/families.

Ask for Feedback

Acknowledgments

The author would like to thank Kristi Kirshner, MD, Debjani Mukherjee, PhD, Teresa Savage, PhD RN, and Rebecca Brashler, LCSW, of the Donnelley Ethics Program at the Rehabilitation Institute of Chicago for their training and guidance on the project that led up to this article. I also thank Karen Kavanaugh, PhD RN FAAN, for her postdoctoral mentoring and feedback on the initial manuscript. The author's postdoctoral training while conducting this project and writing the manuscript was supported by the Irving B. Harris Foundation Faculty Scholar Initiative awarded to the School of Nursing at the University of Illinois at Chicago. Manuscript revisions were supported by a National Institutes of Nursing Research postdoctoral training grant (2T32NR0007091), Interventions for Prevention & Managing Chronic Illness.

Footnotes

Conflict of Interest: The author reports no conflicts of interest related to this article.

References

Grabois E, Young ME. Managed care experiences of persons with disabilities. Journal of Rehabilitation. 2001;67(3):13-19. [Google Scholar]

Hunt B, Matthews C, Milsom A, Lammel JA. Lesbians with physical disabilities: A qualitative study of their experiences with counseling. Journal of Counseling & Development. 2006;84:163-173. [Google Scholar]

Institute of Medicine. Crossing the Quality Chasm : A New Health System for the 21st Century. Washington, D.C: National Academy Press; 2001. p. xx.p. 337. [[PubMed] Google Scholar]

# data[].attributes.attachment_link.title
Challenging Nurses' Cultural Competence of Disability to Improve Interpersonal Interactions

# data[].attributes.attachment_link.description
J Neurosci Nurs. Author manuscript; available in PMC 2014 Feb 1. Published in final edited form as: Worldwide, at least 6.9 billion people have an impairment producing health condition (IPHC). Insensitive encounters with health care providers (HCPs) can result in negative appraisals, fear, and avoidance, but little is known about what things are commonly perceived as insensitive.

# data[].attributes.attachment_link.description
Brene Brown estuda a conexão humana, nossa habilidade de sentir empatia, pertencer, amar. Em uma palestra comovente e divertida no TEDxHouston, ela compartilha uma percepção profunda de sua pesquisa, que a levou a uma busca pessoal para conhecer a si mesma e entender a humanidade. Uma palestra para compartilhar.

# data[].attributes.headline
Medical Education and Disability Studies

# data[].attributes.subject
Medical Education and Disability Studies

# data[].attributes.body
Fiona Kumari Campbell

Journal of Medical Humanities
volume 30,
pages
221–235 (2009)

# data[].attributes.attachment_link.readable_text
Abstract

The biomedicalist conceptualization of disablement as a personal medical tragedy has been criticized by disability studies scholars for discounting the difference between disability and impairment and the ways disability is produced by socio-environmental factors. This paper discusses prospects for partnerships between disability studies teaching/research and medical education; addresses some of the themes around the necessity of critical disability studies training for medical students; and examines a selection of issues and themes that have arisen from disability education courses within medical schools globally. The paper concludes that providing there is a commitment from senior management, universities are well positioned to apply both vertical and horizontal approaches to teaching disability studies to medical students.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Notes

1. F.Campbell. "Access to Community Health Care Services for Women with Disabilities". Australian Disability Review 1 (1984):. 30-33; K.Ormond, C.Gill, P. Samark & K. Kirschner. "Attitudes of Health Care Trainees About Genetics and Disability: Issues of Access, Health Care Communication, and Decision Making", Journal of Genetic Counseling, 12(4), August (2003): 333- 349; K.Piotrowski & L. Snell. "Health Needs of Women with Disabilities across the Lifespan", JOGNN, 36 (2007): 79-87; S. Smeltzer & V. Zimmerman. "Health promotion interests of women with Disabilities". Journal of Neuroscience Nursing. 37(2) (2005): 80-86; S.Smeltzer. "Improving the health and wellness of persons with disabilities: A call to action too important for nursing to ignore". Nursing Outlook. 55(4) (2007): 189-193.

2. Melville, "Discrimination and health".

3. F.Campbell. "Litigation neurosis: Pathological responses or rational subversion?", Disability Studies Quarterly, Fall, 25 (4) (2006), http://www.dsq-sds.org/article/view/655/832;

Loeser, "Doctors, diagnosis, and disability".

4. Martin, "Cerebral Palsy".

5. Ormond,"Attitudes of health care Trainees".

6. Kvalsvig, " Ask the Elephant".,

7. Martin, "Cerebral Palsy", p. 46.

8. Ormond, "Attitudes of Health Care Trainees".

9. L.Iezzoni. "Going Beyond Disease".

10. See Campbell, "Exploring Internalized Ableism".

11. Byron,"What does 'disability' mean"; M.Byron, C. Howell, P. Bradley, S. Bheenuck, C. Wickham & T. Curran. " Different Differences, Disability Equality Teaching in Healthcare Education A document for action, Partners", in Practice, Bristol. (2006). Online at http://www.bristol.ac.uk/pip/framework.pdf

12. S. French, "Simulation Exercises in Disability Awareness training: A Critique", Disability & Society, 7(3) (1992). : 257 - 266; G.Kiger. "Disability Simulations: Logical, methodological and Ethical Issues", Disability & Society, 7(1) (1992). : 71 - 78; D.Pfeiffer. "Disability Simulation using a wheelchair exercise", Journal of postsecondary education and Disability, 7(2) (1989). : 53 - 60.

13. Richards, "Évaluation de L'attitutdue ", p.:666,) < <...quels sont les moyens pédagogiques pertinents pour y parvenir ? Si l'attitude vis-à-vis des personnes handicapées est d'abord une affaire de concepts, de prise de conscience des mécanismes de discrimination et de préjugés sociaux, cet enseignement doit alors trouver sa place dans le corpus de sciences humaines et d'initiation à l'éthique : discussion des modèles médicaux et sociaux du handicap, parallèle avec d'autres formes de discrimination, réflexion sur la part des attitudes dans les décisions médicales. Si le comportement final est la résultante de l'attitude et de l'expérience, notamment des contacts vécus avec des personnes handicapées, les enseignements théoriques et pratiques de MPR peuvent y contribuer, mais doivent probablement être modifiés.>>

14. M.Byron, & P. Dieppe."How to handicap medical Students?", Letters to the Editor, Medical Education, 35 . (2001): 83; M.Crotty, P. Finucane & M. Ahern. "Author's Reply", Letters to the Editor, Medical Education, 35(2001). : 84.

15. Crotty, ."Teaching medical students".

16. ,Byron, "What does 'disability' mean".

17. Crotty,."Teaching medical students"., p. 84.

18. DSU web page, "Guiding Principles", Disability Studies Unit, DSU. (2007). Disability Studies Unit, DSU, Faculty of Medicine, University of Kelaniya (Sri Lanka) Home page, Online at http://www.med.kln.ac.lk/dsu/Dsu.htm.

19. Melville, "Discrimination and Health".

20. L.Iezzoni. "Going Beyond Disease".

References

Byron, M., Howell, C., Bradley, P., Bheenuck, S., Wickham, C. and T. Curran. Different Differences, Disability Equality Teaching in Healthcare Education A document for action, Partners, in Practice, (Bristol, 2006). http://www.bristol.ac.uk/pip/framework.pdf

Campbell, F. "Litigation neurosis: Pathological responses or rational subversion?" Disability Studies Quarterly 25, No.4 (Fall 2006).

Dieppe, P., Anderson, E., Byron, M. and L.Marks. "Teaching Doctors about Disability." BMJ Careers (23 September 2006): 113 - 115.

Disability Rights Commission. Background evidence for the DRC's formal investigation into health inequalities experienced by people with learning disabilities or mental health problems, Disability Rights Commission, UK. (2004). http://www.library.nhs.uk/SpecialistLibrarySearch/Download.aspx?resID=269518.

Disability Studies Unit, DSU. Disability Studies Unit, DSU, Faculty of Medicine, University of Kelaniya (Sri Lanka) Home page. (2007). http://www.med.kln.ac.lk/dsu/Dsu.htm.

Jones, Peter and Mal Donald. "Teaching Medical Student about Children with Disabilities in a Rural setting in a school." BMC Medical Education 7, No.12 (2007). http://www.biomedcentral.com/1472-6920/7/12

Mäenpää, Eliisa. "Sairaalalääkärin jaksaminen työterveyshuollon näkökulmasta [Hospital physicians well-being viewed from their occupational services]." Acta Universitatis Tamperensis, No.729 (2000). (Tampere: University of Tampere, Finland.)

Richard, I, V. Compain, J. Mouillie, F. Ades, F. Garnier, F. Dubas, and J. Saint-Andre. "Évaluation de L'attitutdue vis-à vis des personnes handicapées des étudiants en médicine de 3e and 4e année par le questionnaires." [Attitude towards disabled person] Effects de I'enseignement théorique et de stages dans les services de medicine physique et réadaptation, Annales de Réadaptation et de Médecine Physique 48 (2005): 662 - 667. (French only).

Rubin, G. "'The Traffic in Women: Notes on the Political Economy of Sex." In R. Reiter (ed) Towards an Anthropology of Women 1975, 157 - 210

Scott, J. 'Experience' in Butler, J. and Scott, J. (eds.) Feminists Theorize the Political. New York: Routledge. 1992. pp.22-40.

Swartz, L. Schneider, M. and P. Rohleder. "HIV/AIDS and disability: New Challenges." In (Eds). Disability and Social Change: A South African Agenda 2006. pp. 108 -115.

Download references

Author information

Authors and Affiliations

1. School of Human Services & Social Work, Logan Campus University Drive, Griffith University, Meadowbrook, Qld 4131, Australia

Fiona Kumari Campbell

2. Adjunct Professor in Disability Studies, Faculty of Medicine, University of Kelaniya, Ragama, Sri Lanka

Fiona Kumari Campbell

Corresponding author

Correspondence to Fiona Kumari Campbell.

About this article

Cite this article

Campbell, F.K. Medical Education and Disability Studies. J Med Humanit 30, 221-235 (2009). https://doi.org/10.1007/s10912-009-9088-2
Download citation

Share this article

Anyone you share the following link with will be able to read this content:

Get shareable link

Provided by the Springer Nature SharedIt content-sharing initiative

Keywords

# data[].attributes.attachment_link.title
Medical Education and Disability Studies - Journal of Medical Humanities

# data[].attributes.attachment_link.description
The biomedicalist conceptualization of disablement as a personal medical tragedy has been criticized by disability studies scholars for discounting the difference between disability and impairment and the ways disability is produced by socio-environmental factors.

# data[].attributes.headline
Disability Inclusion in Nursing Education

# data[].attributes.subject
Disability Inclusion in Nursing Education

# data[].attributes.body
Teaching and Learning in Nursing

Volume 15, Issue 1,
January 2020, Pages 53-56

# data[].attributes.attachment_link.title
Bookmark results - OneSearch - University of Maine

# data[].attributes.attachment_link.description
Teaching and learning in nursing, 01/2020, Volume 15, Issue 1

# data[].attributes.headline
Attitudes towards disability in an undergraduate nursing curriculum: A literature review

# data[].attributes.subject
Attitudes towards disability in an undergraduate nursing curriculum: A literature review

# data[].attributes.body
Judy A.Seccombe
Nurse Education Today

Volume 27, Issue 5,
July 2007, Pages 459-465

# data[].attributes.headline
Preparing Nurses to Care for People with Developmental Disabilities: Perspectives on Integrating Developmental Disabilities Concepts and Experiences into Nursing Education

# data[].attributes.subject
Preparing Nurses to Care for People with Developmental Disabilities: Perspectives on Integrating Developmental Disabilities Concepts and Experiences into Nursing Education

# data[].attributes.attachment_link.readable_text
Something curious was happening in the emergency room. Eight patients had come in within minutes of each other. Almost instantly, the junior resident, two interns and a medical student signed up for all of the them - except for one.

Half an hour passed, then an hour. As the senior resident doctor at the time, I supervised the others as they tended to the middle-aged man with chest pain, the elderly woman with a broken wrist and the teenage girl with a sore throat.

New patients kept coming in, and they, too, were seen quickly.

Still, there was that one patient everyone seemed to avoid, a man in his 20s with back pain. I watched as the medical student picked up his chart, then placed it back on the rack. Nurses, too, weren't going to his room. Finally, I assigned a team to care for him.

"We drew the short straw here," I overheard the nurse say.

The resident sighed. "I already ordered labs and an X-ray. It's going to take too long to examine him, so let's just get this started."

What was different about this patient? Was it a dangerous, contagious disease? A mental health problem marked by a violent streak? A history of weekly drunken visits to the ER?

No. All he had was a wheelchair.

He had been in a car accident five years before and was paralyzed from the waist down. He told me that he was used to waiting, to being the patient that providers avoided. His back pain was from a kidney infection, and it turned out that all he needed was an antibiotic.

Though nearly 20 percent Americans have physical or mental disabilities, studies show that less than 20 percent of medical schools teach their students how to talk with disabled patients about their needs.

More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.

Last year, researchers called doctors' offices in four U.S. cities to make an appointment for a fictional patient who was obese and wheelchair-dependent. One in five offices said that they wouldn't see this patient, citing reasons that included a lack of trained staff and a lack of equipment to help patients onto an examining table.

Medical offices routinely provide phone interpreters for patients who speak a language other than English. Medical schools teach students about diseases so rare that they affect only one in a million people. Yet there's been only halting progress in the care of tens of millions of Americans with disabilities.

The Americans with Disabilities Act is supposed to grant civil rights protection to individuals with disabilities, but it lacks specific provisions to ensure equal treatment in medical settings.

A few medical schools have started pilot programs to teach students about patients with disabilities. At the University of South Carolina, a single 90-minute lecture made medical students more comfortable treating people with disabilities. Other med schools are encouraging students to rotate through rehabilitation centers and are incorporating interdisciplinary learning with occupational and physical therapists.

These programs are a good start, but aren't nearly enough. Disabilities education needs to be a central part of medical training in the same way that learning to care for people from different cultural backgrounds is now.

A few weeks ago, I attended a workshop where a doctor and nurse practitionerwho themselves had disabilities spoke about their experiences as patients. They talked about barriers to care and the stigma they face, and provided some suggestions to clinicians.

Afterward, I watched as two of the attendees, a resident and a nurse looked at a patient's chart. This was another patient in a wheelchair.

I held my breath. This time, nobody put the chart down. They went straight into his room.

Dr. Wen is an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University. She is the author of "When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Care," and founder of Who's My Doctor, a project to encourage transparency in medicine.

# data[].attributes.attachment_link.title
Doctors' Ignorance Is A Barrier To Care For Disabled

# data[].attributes.attachment_link.description
Something curious was happening in the emergency room. Eight patients had come in within minutes of each other. Almost instantly, the junior resident, two interns and a medical student signed up for all of the them - except for one. Half an hour passed, then an hour.

# data[].attributes.attachment_link.readable_text
Get a daily email featuring the latest talk, plus a quick mix of trending content.

By subscribing, you understand and agree that we will store, process and manage your personal information according to our Privacy Policy

# data[].attributes.attachment_link.title
Stella Young: I'm not your inspiration, thank you very much

# data[].attributes.attachment_link.description
Stella Young is a comedian and journalist who happens to go about her day in a wheelchair - a fact that doesn't, she'd like to make clear, automatically turn her into a noble inspiration to all humanity. In this very funny talk, Young breaks down society's habit of turning disabled people into "inspiration porn."

# data[].attributes.attachment_link.description
Ableism Sara Henry, UMaine Student Accessibility Servicess What is a disability? What is a disability? Medical Model The definition of disability depends on the model you're using. Medical Model Legal Model Social Model Disability/ Diagnosis Disability is a deficit A person's Legal