rnjbanner
 
Home > RNJ > 2011 > July/August > Cultural Cues: Review of Qualitative Evidence of Patient-Centered Care in Patients with Nonmalignant Chronic Pain

Cultural Cues: Review of Qualitative Evidence of Patient-Centered Care in Patients with Nonmalignant Chronic Pain
Diane B. Monsivais, PhD CRRN Joan C. Engebretson, DrPH AHN-BC RN

The purpose of this paper was to examine published qualitative studies that explored the beliefs, values, and behaviors of patients with nonmalignant chronic pain during their interactions with the healthcare system. The findings were used as “cultural cues” to create patient-centered care. A literature review of primary qualitative studies that focused on beliefs, values, or behaviors of patients with chronic nonmalignant pain in the formal healthcare setting was conducted. CINAHL, Medline, Pubmed, PsychInfo, Sociology Abstracts, Cochrane Library Database, Proquest Dissertation and Thesis, and ¨EmBase served as the database for the research. The findings from the studies fell into two categories: beliefs and expectations about appropriate treatment and the behaviors patients may exhibit if they perceive they are not receiving appropriate treatment. Qualitative findings showed that the beliefs, values, and behaviors of patients with nonmalignant chronic pain exhibited during their interactions with the healthcare system created a set of “cultural cues” for providers.

Chronic pain is a severe health problem that affects 76.5 million Americans (National Center for Health Statistics, 2006). Approximately 50 million work days are lost each year due to pain, and pain is the most common reason for seeking medical care (American Pain Society, 2009). Clinically, patients experiencing chronic pain often exhibit frustration in their encounters with the biomedical system and these interactions play a crucial role in shaping their experience (Good, 1994). Sufferers of chronic pain share a common experience in their encounters with the biomedical system in that their health problems often are not readily attributable to an organic lesion or disturbance. The purpose of this literature review was to explore the qualitative research regarding patients’ experiences with chronic pain.

The Culture of Biomedicine: Objective Evidence Is the Focus

Patients with nonmalignant chronic pain, which is invisible, often find themselves trapped by the biomedically driven culture of the healthcare system. Morris (1998) described this biomedical culture in which we believe that illness is due to "microbes, toxins and internal malfunctions” (p. 5) . Anthropologists have also described biomedicine as a distinct culture, complete with its own beliefs, values, language, rituals, dress, social roles, and understanding of health and disease (Lock & Gordon, 1988; Stein, 1990). The biomedical model is firmly based in scientific empiricism and is focused largely on a mechanical understanding of physiology and the mechanisms of disease. This often diverges from the patient’s focus on the illness experience. Good (1994) described medical practice as designed to localize suffering to a discrete site in the body, which can then be made visible and subjected to therapeutic treatments. Chronic pain resists such objectification, thus challenging the reality of the condition and, in turn, disaffirms the sufferer. The biomedical culture of professional medicine consists of beliefs, values, and behaviors that have been socially and culturally constructed in an acute care setting (Thorne, 1993) and are tightly bound by the biomedical perspective. For example, the biomedical acute pain model splits mind from body and suggests the only origin for pain is tissue damage (Morris, 1998). And, because the biomedical model relies heavily on objective evidence, those with invisible or more subjective problems such as chronic pain often face incredible difficulties in receiving proper care. Medical evidence is shaped by the culture of those using it (De Vries & Lemmens, 2006), so practitioners with an acute-care focus see and respond to mainly objective pathology. Because physicians often hear words as “diagnostic cues” only, they do not integrate the words into the context of the patient’s life (Thomas, 2000). The patient’s story, or narrative, is generally discounted as credible evidence. When the narratives of chronic pain patients are unheard or dismissed as unimportant, key pieces of evidence that may shape diagnosis and treatment are lost.

Needed: Recognition of Cultural Cues from Patients with Chronic Pain

Along with their individualized beliefs, values, and expectations, patients who have common illnesses, such as chronic pain, share common experiences when having to deal with that illness in the healthcare system. For example, the clash between the invisible nature of pain and the biomedical cultural focus of the healthcare system creates a core of common experiences for those who are living the chronic pain experience.

Patients develop explanatory models about illness, expectations about clinical relationships, and ideas about appropriate treatment (Engebretson & Littleton , 2001). Some of the beliefs and core values held by patients are related to their cultural background, previous experiences, and other sources of information. In good patient care, the clinician brings to the encounter expert medical knowledge and current research, along with clinical expertise. The clinician also must take into account the individual patient’s cultural values and circumstances (Engebretson, ¨Mahoney, & Carlson, 2008). The clinician’s expertise is often challenged by the lack of objective data in treating chronic pain, and also in discerning these cultural issues. A better understanding of the patients’ experiences with particular illness, such as chronic pain, their relationships with the provider, and ideas about appropriate treatment, can then become “cultural cues” for the provider during the clinical encounter. Cultural competency for a group of patients with a common illness involves being attuned to these cues from patients (Engebretson et al., 2008). In addition to being attuned to cultural cues that arise from a common illness experience, Kleinman and Benson (2006) distill the essence of cultural competence down to asking patients what matters most in the experience of illness and treatment. The combination of knowing cultural cues about a common illness experience and determining priority concerns for the patient allow for effective coplanning of treatment decisions between patient and provider.

The purpose of this article is to examine published qualitative studies that explored the interaction of patients with nonmalignant chronic pain and the healthcare system, and to summarize their beliefs, values, and behaviors during the interactions to determine the state of the science about “cultural cues” available for guiding practice.

Study Background

This paper focuses on beliefs, values, and behaviors of patients with nonmalignant chronic pain during interactions with the healthcare system. Qualitative studies, which were part of a larger review, were reviewed and synthesized. The primary aim of the larger review was to examine published quantitative and qualitative studies that addressed attitudes, beliefs, behaviors, or communication issues of patients with chronic nonmalignant pain or their care providers in the formal healthcare setting. The original review spanned 1990–2007; an updated search was conducted in January 2010 for qualitative studies published since 2007. 1990 was chosen as a starting point because it was the beginning of an era during which professional organizations such as the World Health Organization, the Agency for Health Care Policy and Research, the American Pain Society, and the Oncology Nursing Society invested considerable energy in addressing inadequate pain management (Ezenwa, Ameringer, Ward, & Serlin, 2006).

A health sciences librarian was consulted prior to searching the literature. The databases used for this focused review included CINAHL, Medline, PubMed, PsychInfo, Sociology Abstracts, Cochrane Library Database, Proquest Dissertation and Thesis, and EmBase. The key words used (alone and in combination with each other) during the literature search were chronic pain, culture, attitude, beliefs, behaviors, communication, minority, ethnicity, disparities, healthcare providers, and medically unexplained symptoms.

For this article, the qualitative findings from patients’ perspectives were reviewed for patient-¨centered evidence about common beliefs, values, and behaviors of patients with chronic nonmalignant pain. The question that helped focus our findings was “What findings create cultural cues that could guide practice for clinicians providing care to patients with chronic nonmalignant pain?” Some of these cultural cues include explanatory models, beliefs about being ill, expectations about clinical relationships, and ideas about appropriate treatment (Engebretson et al., 2008). For example, patients often have an expectation that appropriate treatment is based on an acute care illness model even if they have a chronic illness. Acute care models focus on the idea of cure or treatment of disease rather than illness control. Illness control often involves lifestyle changes such as nutrition, exercise, and sleep habits. These are often the most difficult part of treatment for many patients. Their familiarity with the acute model of illness in which illness is controlled by medication and rest and then disappears remains at the forefront of their thinking.

A total of 17 qualitative studies were reviewed. The findings are presented in two broad categories: beliefs and expectations about appropriate treatment and the behaviors patients may exhibit if they perceive they are not receiving appropriate treatment.

Findings

Beliefs and Expectations About Appropriate Treatment

Patients have underlying assumptions about how they will be treated when entering the healthcare system. These assumptions generally include the idea that they will be taken seriously and will receive a diagnostic label describing the problem and that effective treatment will be offered that will cure or alleviate the problem. Effective treatment may mean a referral if the diagnosing physician is not able to provide specialized care. These assumptions are frequently violated when the problem does not have objective findings to support a diagnosis and, in fact, the overwhelming finding regarding beliefs or expectations about treatment by participants with chronic pain was that they should have received better or more appropriate treatment for their problem.

Appropriate Treatment Expectations Generally Not Met

Walker, Holloway, and Sofaer (1999) explored the lived experience of seeking care in the healthcare system for back pain. The phenomenological interpretation of narrative accounts of 20 adults ages 28–80 years who had experienced pain for 28–50 years were described. They found participants often felt trapped in a medical system that provided uncoordinated care, poor communication, and ineffective treatment. One of the main themes was feeling misunderstood because they were not believed. Confirmation by healthcare providers that the pain was “real” is a major part of effective treatment for many patients and is a recurrent theme in almost every study.

Dewar, White, Posade, and Dillon (2003) reported on focus groups comprised of 53 community participants with chronic pain ranging in age from 15–80 years. The participants’ expectations were that they should have received improved treatment, including improved availability of pain management specialists, increased caring treatment from their primary physicians, and more guidance in making informed care decisions.

Dewar, Gregg, White, and Lander (2009) conducted in-depth semistructured interviews with 19 chronic pain patients 40–65 years old with pain duration from 4–52 years. They found that confirming the patient’s assertion that the pain was real was an essential part of effective treatment. Rhodes, McPhillips-Tangum, Markham, and Klenk (1999) explored the meaning of diagnostic testing for patients with low back pain in 54 pain patients ages 26–65 years old, and found that visible test results legitimize pain because positive test results make pain “real” rather than imagined. Part of the process of establishing that the pain is real includes the expectation that the provider will confer a diagnosis that then creates a legitimate category of illness and allows people to be taken seriously as a sick person.

Glenton (2003) reviewed the illness experience of Norwegian back pain sufferers. Using contributions to an online discussion group for back pain patients and 19 in-person interviews with people ranging from 24–65 years old with low back pain, findings showed that they needed to have a diagnosis and be declared officially ill by a physician to legitimize the illness. Without an official declaration of illness, they could not get appropriate treatment. This created further problems such as delayed benefits payments or medications and, ultimately, more time spent in the healthcare system. Henricksson’s (1995) examination of patient perspectives on living with chronic pain in 40 women with fibromyalgia living in both the United States and Sweden found that the time spent trying to get a diagnosis was very stressful, and without it they felt rejected and misunderstood. Without the diagnosis, they did not feel they could make any progress.

Lillrank (2003) used written narrative evaluation to explore the process of getting pain diagnosed with 30 women ages 20–66 years who had back pain lasting from several months to more than 20 years. Receiving a diagnosis and being taken seriously provided relief. Kugelmann (1999) also found that the affirmation of pain as a real entity provided emotional relief. During 15 semistructured interviews, Harding, Parsons, Rahman, and Underwood (2005) found that patients had unmet expectations that included not being able to get a diagnosis and not being taken seriously by the provider.

In summary, appropriate treatment expectations included being taken seriously and given a diagnosis, being referred for specialized pain care if their own provider could not provide it, and being offered caring treatment and communication. The participants in the reviewed studies did not find that their treatment expectations had been met.

Specifically Requested Needs

Participants often expected more education about the illness, including an explanation of what is wrong (Dewar et al., 2003; Laerum, Indahl, & Skouen, 2006). The patients specifically asked for educational material about best practices in the study conducted by Dewar and colleagues (2009).

Another expectation for effective treatment was that providers would use caring communication techniques. According to the participants in Werner, Isaksen, and Malterud’s (2004) study, caring communication meant upholding the image of themselves as capable persons, and not being portrayed as weak or crazy by the provider. Recognition that the pain is real not only brought a sense of relief, but in one study of ten women with musculoskeletal pain, recognition resulted in increased strength and confidence (Werner, Steihaug, & Malterud, 2003).

Thomas (2000) explored the meaning of living with chronic pain among 13 adults ages 27–79 years old with pain duration of 7 months to 41 years. The relationships they had with their physicians were of mistrust, and they wished for a caring provider who could provide pain relief. Seers and Friedli’s (1996) study participants spoke of barriers to communication that arose when their doctors became frustrated when no objective evidence for the pain could be found. The frustration created ongoing communication problems that impeded caring communication.

Specifically requested needs in the studies reviewed included educational material based on best practices, communication from the provider that upheld the image of the patient as a capable person, and providers who did not become frustrated when no objective evidence for pain could be found.

Pain-Related Behaviors Patients ¨May Exhibit

If patients perceive that they are not getting appropriate treatment for their pain problem, they may exhibit specific pain-related behaviors. These behaviors create “cultural cues” for a clinician who is tuned into the behaviors. Somatizing or overdramatizing to make the physician believe the pain is real is a common practice. Werner and Maltured (2003) described the efforts ten 26–58-year-old females with musculoskeletal pain took to be believed and taken seriously. When the women did not get the attention they needed, they attempted to make the symptoms visible to fit the normative biomedical expectations. This included using their own ideas about appropriate dress and demeanor of a person in pain. Women worried about looking “too healthy” if they wore nice clothes and make-up. They thought that physicians might think that their ability to fix themselves up meant they did not really have pain. The 20 women in the study by Johansson, Hamberg, Lindgren, and Westman (1996) also discussed the need to somatize to get the doctor’s attention.

Another behavior patients exhibited was using specific strategies to preserve the relationship with the physician. One strategy involved withholding some of the information about the pain and picking a priority problem to focus on so as not to overwhelm the physician (Dewar et al., 2009.) For example, pain intensity might be more worrisome in one body part than another, so rather than mentioning both, the participant brought up the one that was most worrisome. Werner and Malterud’s (2003) participants worried about complaining to a degree that would annoy and then alienate the provider.

McGowan, Luker, Creed, and Chew-Graham (2007) found that women discontinued their treatment (in spite of continuing symptoms) when they could no longer stand to stay in a system that did not validate their pain. They regained control by leaving the system.

Somatizing, withholding information so as not to overwhelm the physician, and leaving the system if their pain was not validated were pain-related behaviors exhibited by the participants in the studies reviewed for this article.

Summary

The main findings from the studies fell into categories that included beliefs and expectations about appropriate treatment, and the behaviors patients may exhibit if they perceive they are not receiving appropriate treatment. Receiving a diagnosis was crucial because all future treatment hinged on the diagnosis. If the provider was not able to diagnose the problem, patients expected to be referred to someone who could. After a diagnosis was made, patients expected coordinated effective care from caring providers. They also expected to receive information about treatment for chronic pain (patient education) that incorporated best practices.

If care did not meet these standards, patients exhibited pain-related behaviors that could be considered cultural cues. Somatizing, overdramatizing, withholding information, and leaving the system are examples of these pain-related behaviors.

Discussion

The diversity of ages and backgrounds of the studies is wide. Studies were carried out in the United States, Norway, Sweden, Finland, United Kingdom, and Canada. The similarity of the findings, however, is striking. Patient expectations about the factors that constitute good health care in general are often not met when the patient has chronic pain. In part, this has to do with the current state of the healthcare system; the complexities of chronic pain only amplify the problem. What patients expect when they enter the healthcare system is affirmation that their pain is real, that they will be given a diagnostic label, and that they will be provided with education or interventions related to current best practices. They have an expectation that the provider will be a good communicator and will listen to concerns, recognizing them as legitimately ill people. If they do not receive recognition and treatment for their problem, they may somatize to get attention and then withdraw from the system if appropriate attention is not forthcoming. Understanding that patients who live with a particular chronic condition can be considered a cultural subgroup and knowledge of the shared elements of the common healthcare experience for the subgroup allows the provider to apply these findings when interacting with the patient.

Relevance for Rehabilitation Nursing Practice

Kearney (2001) described the application of qualitative evidence to healthcare encounters. Findings may provide insight to a problem (allowing the provider to be more supportive) and allow assessment of progress (consider range of responses based on what is in the literature), anticipatory guidance (sharing), and coaching (advising of steps to reduce distress). The applications use increasing levels of patient involvement. The clinician should use his or her judgment about the best way to use any findings based on the patient’s situation.

Applying Kearney’s categories to the qualitative findings regarding patients with chronic pain allows the rehabilitation nurse to put the findings into practice. Understanding patients’ beliefs and expectations about appropriate treatment for chronic pain problems helps providers communicate with their patients. During discussions with their patients, rehabilitation nurses should demonstrate that they take the patient’s pain seriously and offer caring communication. Rehabilitation nurses should also have their patients enumerate their priority concerns. In addition, the cultural cues from behaviors exhibited by patients provide nurses information that they can share with patients. For example, distress for patients can be reduced if they know they do not have to perform to get attention and be believed (e.g., making pain visible with exaggerated behaviors, demeanor, and deliberate “dressing-down”). The provider can assure the patient that he or she will still be taken seriously, and, in fact, reward positive behaviors and progress such as taking care with dress and make-up.

Using qualitative evidence within the context of the Cultural Negotiation Model (Engebretson & Littleton, 2001) and Clinically Relevant Continuum Model (Engebretson et al., 2008) allows the rehabilitation nurse to provide care that is patient centered and focused within the context and culture of patients with chronic pain.

The Cultural Negotiation Model allows care providers and patients to arrive at mutually derived plans. In contrast to the traditional nursing process that is provider driven, the negotiation model views the patient as providing expert knowledge of his or her own condition. Although the provider brings knowledge from research evidence and a clinical background, the patient provides specifics about his or her own situation; as a result, joint decision making and planning can occur.

The care practitioner is able to move toward a culturally proficient practice using knowledge gathered from the Cultural Negotiation Model. Engebretson and colleagues (2008) positioned biomedical values parallel to cultural competency concepts developed by Cross, Bazron, Dennis, and Isaacs (1989). This new model, the Clinically Relevant Continuum Model, creates a practical way of viewing cultural competency. The culturally competent and proficient practitioner uses the principles of evidence-based practice described by Sackett, Strauss, Richardson, Rosenberg, and Hayes (2000). The culturally competent and proficient provider is therefore one who includes patient values and circumstances, provider expertise, and external evidence to provide patient-centered care.

Qualitative evidence can be viewed similarly to other clinical research evidence. It gives the clinician a deeper understanding of a particular population, in this case a population that shares the experiences of chronic pain. This understanding expands the knowledge base, allowing the clinician to develop clinical expertise and be more attuned to cultural cues. By providing individualized patient care, the clinician can better determine the specific concerns of an individual patient.

Conclusion

Qualitative findings regarding beliefs, values, and behaviors of patients with nonmalignant chronic pain during their interactions with the healthcare system reveal a set of “cultural cues” for providers. These cues relate to beliefs and expectations about appropriate treatment and the behaviors patients may exhibit if they perceive they are not receiving appropriate treatment. Awareness of these cues from a patient with chronic pain allows the nurse to provide improved assessment, anticipatory guidance, and coaching.

About the Authors

Diane B. Monsivais, PhD CRRN, is an assistant professor at the University of Texas at El Paso School of Nursing in El Paso, TX. Address correspondence to her at dimonsivais@utep.edu.

Joan C. Engebretson, DrPH AHN-BC RN, is a professor at the School of Nursing Department of Integrated Nursing Care at University of Texas Health Science Center at Houston in Houston, TX.

References

American Pain Society. (2009). APS Press Room. Media Backgrounder. Retrieved April 18, 2011, from www.ampainsoc.org/press/backgrounder.htm.

Cross, T., Bazron, B., Dennis, K., & Isaacs, M. (1989). Towards a culturally competent system of care, Vol. 1. Washington, DC: Child and Adolescent Service System Program Technical Assistance Center, Georgetown University Child Development Center.

De Vries, R., & Lemmens, T. (2006). The social and cultural shaping of medical evidence: Case studies from pharmaceutical research and obstetric science. Social Science & Medicine, 62(11), 2694–2706.

Dewar, A. L., Gregg, K., White, M. I., & Lander, J. (2009). Navigating the health care system: Perceptions of patients with chronic pain. Chronic Diseases in Canada, 29(4), 162–168.

Dewar, A., White, M., Posade, S. T., & Dillon, W. (2003). Using nominal group technique to assess chronic pain, patients’ perceived challenges and needs in a community health region. Health Expectations, 6(1), 44–52.

Engebretson, J., & Littleton, L. (2001). Cultural negotiation: A constructivist-based model for nursing practice. Nursing Outlook, 49(5), 223–230.

Engebretson, J., Mahoney, J., & Carlson, E. D. (2008). Cultural competence in the era of evidence-based practice. Journal of Professional Nursing: Official Journal of the American Association of Colleges of Nursing, 24(3), 172–178.

Ezenwa, M. O., Ameringer, S., Ward, S. E., & Serlin, R. C. (2006). Racial and ethnic disparities in pain management in the United States. Journal of Nursing Scholarship: An Official Publication of Sigma Theta Tau International Honor Society of Nursing/Sigma Theta Tau, 38(3), 225–233.

Glenton, C. (2003). Chronic back pain sufferers—striving for the sick role. Social Science & Medicine, 57(11), 2243–2252.

Good, B. J. (1994). Medicine, rationality and experience: An anthropological perspective. Cambridge University Press: Cambridge, UK.

Harding, G., Parsons, S., Rahman, A., & Underwood, M. (2005). It struck me that they didn’t understand pain: The specialist pain clinic experience of patients with chronic musculoskeletal pain. Arthritis Care & Research, 53(5), 691–696.

Henriksson, C. M. (1995). Living with continuous muscular pain—patient perspectives. Part I: Encounters and consequences. Scandinavian Journal of Caring Sciences, 9(2), 67–76.

Johansson, E. E., Hamberg, K., Lindgren, G., & Westman, G. (1996). “I’ve been crying my way”—Qualitative analysis of a group of female patients’ consultation experiences. Family Practice, 13(6), 498–503.

Kearney, M. H. (2001). Levels and applications of qualitative research evidence. Research in Nursing & Health, 24(2), 145–153.

Kleinman, A., & Benson, P. (2006). Anthropology in the clinic: The problem of cultural competency and how to fix it. PLoS Medicine. 3(10): e294.

 

Kugelmann, R. (1999). Complaining about chronic pain. Social Science & Medicine, 49(12), 1663–1676.

Laerum, E., Indahl, A., & Skouen, J. S. (2006). What is “the good back-consultation?” A combined qualitative and quantitative study of chronic low back pain patients’ interaction with and perceptions of consultations with specialists. Journal of Rehabilitation Medicine, 38(4), 255–262.

Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science & Medicine, 57(6), 1045–1054.

Lock, M., & Gordon, D. (1988). Biomedicine examined: Culture, illness and healing. New York: Springer Publishing.

McGowan, L., Luker, K., Creed, F., & Chew-Graham, C. A. (2007). How do you explain a pain that can’t be seen? The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. British Journal of Health Psychology, 12(Pt 2), 261–274.

Morris, D. B. (1998). Illness and culture in the postmodern age. Berkeley, CA: University of California Press.

National Center for Health Statistics. (2006). Health, United States. Hyattsville, MD: U.S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Health Statistics.

Rhodes, L. A., McPhillips-Tangum, C. A., Markham, C., & Klenk, R. (1999). The power of the visible: The meaning of diagnostic tests in chronic back pain. Social Science & Medicine, 48(9), 1189–1203.

Sackett, D. L., Strauss, S. E., Richardson, W. S., Rosenberg, W, & Hayes, R. B. (2000). Evidence-based medicine: How to practice and teach EBM. (2nd ed.). Edinburgh: Churchill Livingstone.

Seers, K., & Friedli, K. (1996). The patients’ experiences of their chronic non-malignant pain. Journal of Advanced Nursing, 24(6), 1160–1168.

Stein, H. F. (1990). American medicine as culture. Boulder, CO: Westview Press.

Thomas, S. P. (2000). A phenomenologic study of chronic pain. Western Journal of Nursing Research, 22(6), 683–699; discussion 699–705.

Thorne, S. E. (1993). Negotiating health care: The social context of chronic illness. Newbury Park, CA: Sage Publications.

Walker, J., Holloway, I., & Sofaer, B. (1999). In the system: The lived experience of chronic back pain from the perspectives of those seeking help from pain clinics. Pain, 80(3), 621–628.

Werner, A., Isaksen, L. W., & Malterud, K. (2004). ‘I am not the kind of woman who complains of everything’: Illness stories on self and shame in women with chronic pain. Social Science & Medicine, 59(5), 1035–1045.

Werner, A., Steihaug, S., & Malterud, K. (2003). Encountering the continuing challenges for women with chronic pain: Recovery through recognition. Qualitative Health Research, 13(4), 491–509.

Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409–1419.