Using Lived Experiences of Adults to Understand Chronic Pain: Sickle Cell Disease, an Exemplar

Maxine A. Adegbola*
*Assistant Professor, School of Nursing University of Texas at Arlington, Texas.
Periodicity:August - October'2011
DOI : https://doi.org/10.26634/jnur.1.3.1520

Abstract

Healthcare provision pertaining to painful, chronic conditions can best be optimized by developing positive healthcare provider (HCP)-patient relationships that minimize fragmented care. Nurses, with their holistic, humanistic approach provide a multidimensional focus that fosters individualized and effective outcomes for chronic events. The chronic pain phenotype is subjective, difficult to assess, define and effectively manage. Individuals with one such chronic syndrome, sickle cell disease (SCD), are living longer with pain that is poorly defined and inadequately managed. In addition to using quantitative assessment, clinicians and researchers must use substantive qualitative inquiry to understand the pain from the individual’s perspective, define, and appropriately manage the pain. Combined quantitative and qualitative inquiry can help clinicians and researchers gain insights into pain experiences. This manuscript summarizes the importance of including a narrative (qualitative) inquiry, to offer a holistic, comprehensive and humanistic approach to understanding chronic pain from the individual’s perspective and subsequently positively impacting care delivery. All nurses in the academy-educators, clinicians and researchers need to include a qualitative approach to care delivery, investigation and evaluation of the phenomenon pain, and intentionally demonstrate care. The experiences of individuals with chronic sickle cell disease (SCD) pain are used as an exemplar.

Keywords

Holism, Professionalism, Qualitative, Lived Experience, Ethics, Caring, Story, Beneficence, Sickle cell disease, Pain Assessment

How to Cite this Article?

Adegbola, M.A. (2011). Using Lived Experiences of Adults to Understand Chronic Pain: Sickle Cell Disease, an Exemplar. i-manager’s Journal on Nursing, 1(3), 1-12. https://doi.org/10.26634/jnur.1.3.1520

References

[1]. Adegbola, M.A. (2006). Spirituality and quality of life in chronic illness. The Journal of Theory Construction and Testing, 10(2), 42-46.
[2]. Adegbola, M.A. (2007). The relationship among spirituality, self-efficacy, and quality of life in adults with sickle cell disease. (PhD, Doctoral dissertation, The University of Texas at Arlington, 2007). Proquest, (AAT3289109).
[3]. Adegbola, M.A. (2010). Nurses collaborating with cross disciplinary networks: Starting to integrate genomics into practice. Journal of National Black Nurses Association, 21(1), 46-49. PMD: 20857776.
[4]. Adegbola, M.A. (2011a). Genomics and pain research in sickle cell disease: An explanation of heterogeneity? International Scholarly Research Network- ISRN Nursing, doi:10.5402/2011/672579. PMC: 3146762
[5]. Adegbola, M.A. (2011b). Spirituality, self-efficacy and quality of life among adults with sickle cell disease. Southern Online Journal of Nursing Research, [SOJNR] 11(1) PMC31377798.
[6]. Aisiku, I.P., Smith, W. R., McClish, D.K., Levenson, J.L., Penberthy, L. T., Roseff, S.D., . . . Roberts, J. D. (2009). Comparisons of high versus low emergency department utilizers in sickle cell disease. Annals of Emergency Medicine, 53(5), 587-593.
[7]. Anie, K.A., Egunjobi, F.E., & Akinyanju, O.O. (2010). Psychosocial impact of sickle cell disorder: Perspectives from a nigerian setting. Globalization & Health, 6, 2-2.
[8]. Ashley-Kock, A., Yang, Q., & and Olney, R. S. (2000). Sickle hemoglobin (hb S) allele and sickle cell disease: A huge review. American Journal of Epidemiology, 151(9), 839-845.
[9]. Ballas, S. K. (2005). Pain management of sickle cell disease. Hematol.Oncol.Clin.North Am., 19, 785-802.
[10]. Benjamin, L., Dampier, C., Jacox, A., Odesina, V., Phoenix, D., Shapiro, B., . . . Treadwell, M. (1999). Guideline for the management of acute and chronic pain in sicklecell disease , (APS Clinical Guidelines Series, No.1 ed.). Glenview, Ill: American Pain Society.
[11]. Benjamin, L., Swinson, G., & Nagel, R. (2000). Sickle cell anemia day hospital: An approach for the management of uncomplicated painful crises. Blood, 95(4), 1130-1137.
[12]. Booker, M. J., Blethyn, K. L., Wright, C. J., & Greenfield, S. M. (2006). Pain management in sickle cell disease. Chronic Illness, 2, 39-50. doi:10.1179/174592006x93860.
[13]. Bunn, F. H. (1997). Pathogenesis and treatment of sickle cell disease. New England Journal of Medicine, 337(11), 762-769.
[14]. Claster, S., & Vichinsky, E.P. (2003). Managing sickle cell disease. British Medical Journal, 327(7424), 1151-1155.
[15]. Connelly, L.M. (2010). What is phenomenology? MedSurg Nursing, 19(2), 127-128.
[16]. Dowling, M. (2004). Hermeneutics: An exploration. Researcher, 11(4), 30-39.
[17]. Dunlop, R.J., & Bennett, K. (2006). Pain management for sickle cell disease. Cochrane Database of Systematic Reviews, (2, Art No: Cd003350).
[18]. Elander, J., Lusher, J., Bevan, D., & Telfer, P. (2003). Pain management and symptoms of substance dependence among patients with sickle cell disease. Social Science and Medicine, 5(9), 1683-1696.
[19]. Genetics home reference. US national library of medicine. (2011). Retrieved 2/27, 2011, from http://ghr.nlm.nih.gov/condition/sickle-cell-disease.
[20]. Green, C.R., Anderson, K.O., Baker, T.A., Campbell, L. C., Decker, S., Fillingim, R.B., Vallerand, A.H. (2003). The unequal burden of pain: Confronting racial and ethnic disparities in pain [corrected] [published erratum appears in PAIN MED 2005 Jan/Feb;6(1):99]. Pain Medicine, 4(3), 277-294.
[21]. Green, C.R. (2005). 'The unequal burden of pain: Confronting racial and ethnic disparities in pain': Erratum. Pain Medicine, 6(1), 99-99. doi:10.1111/j.1526- 4637.2005.05018.x.
[22]. Haque, A., & Telfair, J. (2000). Socioeconomic distress and health status: The urban-rural dichotomy of services utilization for people with sickle cell disorder in north carolina. Journal of Rural Health, 16(1), 43-55.
[23]. Harvey, I.S. (2006). Self-management of a chronic illness: An exploratory study on the role of spirituality among older African American women. Journal of Women & Aging, 18(3), 75-88. doi:10.1300/J074v18n03_06.
[24]. Herrick, J.B. (1910). Peculiar elongated and sickleshaped red blood corpuscles in a case of severe anemia. Archives of Internal Medicine, 6, 517-521.
[25]. Holt, C.L., Wynn, T.A., Litaker, M.S., Southward, P., Jeames, S., & Schulz, E. (2009). A comparison of a spiritually based and non-spiritually based educational intervention for informed decision making for prostate cancer screening among church-attending african-american men. Urologic Nursing, 29(4), 249-258.
[26]. Jha, A., Suarez, M.L., Ferrans, C.E., Molokie, R., Kim, Y. O., & Wilkie, D.J. (2010). Cognitive testing of PAINReportIt in adult African Americans with sickle cell disease. Computers, Informatics, Nursing: CIN, 28(3), 141-150.
[27]. Kazanowski, M., Perrin, K., Potter, M., & Sheehan, C. (2007). The silence of suffering: Breaking the sound barriers. Journal of Holistic Nursing, 25(3), 195-203.
[28]. Kearney, G. (2010). We must not forget what we once knew: An exemplar for helping nurses reconnect with their history and rediscover their passion for nursing. Journal of Holistic Nursing, 28(4), 260-262.
[29]. Krupski, T.L., Kwan, L., Fink, A., Sonn, G., Maliski, S., & Litwin, M.S. (2006). Spirituality influences health related quality of life in men with prostate cancer. Psycho- Oncology, 15, 121-131.
[30]. Kutlar, A. (2005). Sickle cell disease: A multigenic perspective of a single gene disorder. Hematology, 10, 92- 99. doi:10.1080/10245330512331390069.
[31]. McHugh, G., & Thoms, G. (2001). Living with chronic pain: The patient's perspective. Nursing Standard, 15(52),
33-37.
[32]. Mitchell, L.A., & MacDonald, R.A. (2009). Qualitative research on pain. Current Opinion in Supportive and Palliative Care, 3, 131-135.
[33]. Newman, M. (2008). Transforming presence: The difference that nursing makes. Philadelphia, PA: F. A. Davis Company.
[34]. Niscola, P., Sorrentino, F., Scaramucci, L., de Fabritiis, P., & Cianciulli, P. (2009). Pain syndromes in sickle cell disease: An update. Pain Medicine (Malden, Mass.), 10(3), 470-480.
[35]. Pack-Mabien, A., Labbe, E., Herbert, D., & Haynes, J. J. (2001). Nurses' attitudes and practices in sickle cell pain management. Applied Nursing Research, 14(4), 187-192.
[36]. Platt, O.S., & Thorington, B.D. (1991). Pain in sickle cell disease. New England Journal of Medicine, 325(1), 11.
[37]. Platt, O.S., Brambilla, D.J., Rosse, W.F., Milner, P. F., Castro, O., Steinberg, M. H., & Klug, P. P. (1994). Mortality in sickle cell disease-life expectancy and risk factors for early death. The New England Journal of Medicine, 330(23), 1639-1644.
[38]. Quinlan-Colwell, A.D. (2009). Understanding the paradox of patient pain and patient Satisfaction. Journal of Holistic Nursing, 27(3), 177-182. doi:10.1177/0898010109332758
[39]. Roberts, I., & de Montalembert, M. (2007). Sickle cell disease as a paradigm of immigration hematology: New challenges for hematologists in Europe. Haematologica, 92(7), 865-871. doi:10.3324/haematol.11474.
[40]. Rosenblatt, A.B., & Mekhail, N.A. (2005). Management of pain in Addicted/Illicit and legal substance abusing patients. Pain Practice, 5(1; 1), 2-10. doi:10.1111/j.1533-2500.2005.05102.x.
[41]. Smith, W.R., Penberthy, L.T., Bovbjerg, V.E., McClish, D. K., Roberts, J.D., Dahman, B., . . . Roseff, S. D. (2008). Daily assessment of pain in adults with sickle cell disease. Annals of Internal Medicine, 148(2), 94-W15.
[42]. Steinberg, M. (1999). Management of sickle cell disease. New England Journal of Medicine, 340(13), 1021.
[43]. Taylor, L.E.V., Stotts, N.A., Humphreys, J., Treadwell, M. J., & Miaskowski, C. (2010). A review of the literature on the multiple dimensions of chronic pain in adults with sickle cell disease. Journal of Pain and Symptom Management, 40(3), 416-435.
[44]. Tennant, F. (2009). Brain atrophy with chronic pain : A call to enhanced treatment. 2009; march: 12-14. Practical Pain Management, (March), 12-14.
[45]. Tsaras, G., Owusu-Ansah, A., Boateng, F.O., & Amoateng-Adjepong, Y. (2009). Complications associated with sickle cell trait: A brief narrative review. American Journal of Medicine, 122(6), 507-512.
[46]. van Manen, M. (1990). Researching the lived experience: Human science for an action sensitive pedagogy. N.Y.: SUNY press.
[47]. van Ryn, M., & Fu, S.S. (2003). Paved with good intentions: Do public health and human service providers contribute to Racial/Ethnic disparities in health? American Journal of Public Health, 93(2), 248-255.
[48]. Weatherall, D., & Clegg, J. (2001). Inherited haemoglobin disorders: An increasing global health problem. Bulletin of the World Health Organization, 79(8), 704-704.
[49]. Weissman, D.E., & Haddox, D.J. (1989). Opiod pseudoaddiction-an iatrogenic syndrome. Pain, 36, 363- 366.
[50]. Wilkie, D.J., Molokie, R., Boyd-Seal, D., Suarez, M.L., Kim, Y.O., Zong, S., . . . Wang, Z. J. (2010). Patient-reported outcomes: Descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with sickle cell disease. Journal of the National Medical Association, 102(1), 18-27.
[51]. Wilkie, D.J., Savedra, M.C., Holzemer, W.L., Tesler, M. D., & Paul, S.M. (1990). Use of the McGill pain questionnaire to measure pain: A meta-analysis. Nursing Research, 39(1), 36-41.
[52]. Woods, K., Karrison, T., Koshy, M., Patel, A., Friedman, P., & Cassel, C. (1997). Hospital utilization patterns and costs for adult sickle cell patients in illinois. Public Health Reports, 112(1), 44-51.
[53]. World Health Organization (WHO). (2011). Retrieved January, 1, 2011, from http://www.who.int/mediacentre/ factsheets/fs308/en/index.html.
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