Changing the Shape of Sickle Cell Disease Treatment: A Hermeneutic Study of a Case that Changed a Family and a Medical Practice
DOI:
https://doi.org/10.11575/jah.v0i0.53306Keywords:
hermeneutics, sickle cell disease, change, family-health care professional relationshipsAbstract
This hermeneutic study analyzes a case of one family who chose to undergo two hematopoietic stem cell transplants for two of their four children affected with sickle cell disease (SCD) with full knowledge of the risks involved with curative therapy. This case had a life-changing impact on the family and on the medical practice of the physician who worked with them. As a result of this family, international treatment of early transplant for SCD has adopted different protocols. In this study, interviewing the mother in the family, the physician, and the transplant nurse, and analyzing the data hermeneutically brings us to a deeper understanding of how change occurs and its profound effect on lives and medical treatment.
References
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Bediako, S.M. (2010). Predictors of employment status among African Americans with sickle cell disease. Journal of Health Care Poor Underserved, 21(4), 1124-1137. doi: 10.1353/hpu.2010.0945
Bernaudin, F., Socie, G., Kuentz, M., Chevret, S., Duval, M. Bertrand, Y., … Gluckman, E. (2007). Long term results of related myeloablative stem-cell transplantation to cure sickle cell disease. Blood, 110(7), 2749-2756. doi: 10.1182/blood-2007-03-079665
Bolaños-Meade, J., & Brodsky, R.A. (2014). Blood and marrow transplantation for sickle cell disease: Is less more? Blood Review, 28(6), 243-248. doi: 10.1016/j.blre.2014.08.001
Butler, D.J., & Beltran. L.R. (1993). Functions of an adult sickle cell group: Education, task orientation, and support. Health Social Work, 18(1), 49-56. doi: 10.1093/hsw/18.1.49
Farde, R., & Linja, T. (2015). “It scares me to know that we might not have been there!”: A qualitative study into the experiences of parents of seriously ill children participating in ethical case discussion. BMC Medical Ethics, 16(40), 1-8. doi: 10.1186/s12910-015-0028-6
Freiermuth, C.E., Haywood, C., Silva, S., Cline, D.M., Kayle, M., Sullivan D., … Tanabe, P. (2014). Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers. Advanced Emergency Nursing Journal, 36(4), 335-347. doi: 10.1097/TME.0000000000000036
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Guilcher, G.M., Fernandez, C.V., & Joffe, S. (2015). Are hybrid umbilical cord blood banks really the best of both worlds? Journal of Medical Ethics, 41(3), 272-275. doi:10.1136/medethics-2013-101673
Hanik, M., Sackett, K.M., & Hartman, L.L. (2014). An educational module to improve healthcare staffs’ attitudes toward sickle cell disease patients. Journal of Nurses Professional Development, 30(5), 231-236. doi: 10.1097/NND.0000000000000058
Hsieh, M.M., Fitzhugh, C.D., Weitzel, R.P., Link, M.E., Coles, W.A., Zhao, X., … Tisdale, J.F. (2014). Nonmyeloablative HLA-matched sibling allogeneic hematopoietic stem cell transplantation for severe sickle cell phenotype. JAMA, 312(1), 48-56. doi:10.1001/ jama.2014.7192
Johnson, F.L., Look, A.T., Gockerman, J., Ruggiero, M.R., Dalla-Pozza, L., & Billings, F.T. (1984). Bone-marrow transplantation in a patient with sickle-cell anemia. New England Journal of Medicine, 311(12), 780-783. doi: 10.1056/NEJM198409203111207
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Moules, N.J., McCaffrey, G., Field, J., & Laing, C.M. (2015). Conducting hermeneutic research: From philosophy to practice. New York, NY: Peter Lang.
Nickel, R.S., Hendrickson, J.E., & Haight, A.E. (2014). The ethics of a proposed study of hematopoietic stem cell transplant for children with “less severe” sickle cell disease. Blood,
124(6), 861-866. doi: 10.1182/blood-2014-05-575209
Odame, I. (2014). Perspective: We need a global solution. Nature, 515(7526), S10. doi:10.1038/515S10a
Palermo, T.M., Valrie, C.R., & Karlson, C.W. (2014). Family and parent influences on pediatric chronic pain: A developmental perspective. The American Psychologist, 69(2), 142–152. doi: 10.1037/a0035216
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. New England Journal of Medicine, 330(23), 1639-1644. doi: 10.1056/NEJM199406093302303
Quinn, C. T. (2004). Survival of children with sickle cell disease. Blood, 103(11), 4023-4027. doi: 10.1182/blood-2003-11-3758
Quinn, C.T. (2013). Sickle cell disease in childhood: From newborn screening through transition to adult care. Pediatric Clinics of North America, 60(6), 1363-1381. doi: 10.1016/j.pcl.2013.09.006
Robinson, C.A. (1996). Health care relationships revisited. Journal of Family Nursing, 2(2), 152-173. doi: 10.1177/107484079600200204
Roth, M., Krystal, J., Manwani, D., Driscoll, C., & Ricafort, R. (2012). Stem cell transplant for children with sickle cell anemia: Parent and patient interest. Biology of Blood Marrow Transplant, 18(11), 1709-1715. doi: 10.1016/j.bbmt.2012.05.013
Serjeant, G.R. (2010). One hundred years of sickle cell disease. British Journal of Haematology, 151(5), 425-429. doi: 10.1111/j.1365-2141.2010.08419.x
Simons, L.E., Goubert, L., Vervoort, T., & Borsook, D. (2016). Circles of engagement: Childhood pain and the parent brain. Neuroscience & Behavioral Reviews, 68, 537-546. doi: 10.1016/j.neubiorev.2016.06.020
Thorne, S.E., & Robinson, C.A. (1989). Guarded alliance: Health care relationships in chronic illness. Image: The Journal of Nursing Scholarship, 21(3), 153-157. doi: 10.1111/j.1547-5069.1989.tb00122.x
Vermylen, C., Cornu, G., Philippe, M., Ninane, J., Borja, A., Latinne, D., … Sokal, G. (1991). Bone marrow transplantation in sickle cell anaemia. Archives of Disease in Childhood, 66, 1195-1198. doi: 10.1136/adc.66.10.1195
Vervoort, T., Trost, Z., Sutterlin, S., Caes, L., & Moors, A. (2014). Emotion regulatory function of parent attention to child pain and associated implications for parental pain control behaviour. Pain, 155(8), 1453–1463. doi: 10.1016/j.pain.2014.04.015
Walters, M.C., Patience, M., Leisenring, W., Eckman, J.R., Scott, J.P., Mentzer, W.C., … Sullivan, K.M. (1996). Bone marrow transplantation for sickle cell disease. New England Journal of Medicine, 335(6), 369-376. doi: 10.1056/NEJM199608083350601
Wright, L.M., & Bell, J.M. (2009). Beliefs and illness: A model for healing. Calgary, AB, Canada; 4th Floor Press.
Wright L.M., & Leahey, M. (1990, 1994, 2000, 2005, 2009, 2013). Nurses and families: A guide to family assessment and intervention (1st-6th eds.). Philadelphia, PA: F.A. Davis.
Wright, L.M., Watson, W.L., & Bell, J.M. (1996). Beliefs: The heart of healing in families and illness. New York, NY: Basic Books.
Bediako, S.M. (2010). Predictors of employment status among African Americans with sickle cell disease. Journal of Health Care Poor Underserved, 21(4), 1124-1137. doi: 10.1353/hpu.2010.0945
Bernaudin, F., Socie, G., Kuentz, M., Chevret, S., Duval, M. Bertrand, Y., … Gluckman, E. (2007). Long term results of related myeloablative stem-cell transplantation to cure sickle cell disease. Blood, 110(7), 2749-2756. doi: 10.1182/blood-2007-03-079665
Bolaños-Meade, J., & Brodsky, R.A. (2014). Blood and marrow transplantation for sickle cell disease: Is less more? Blood Review, 28(6), 243-248. doi: 10.1016/j.blre.2014.08.001
Butler, D.J., & Beltran. L.R. (1993). Functions of an adult sickle cell group: Education, task orientation, and support. Health Social Work, 18(1), 49-56. doi: 10.1093/hsw/18.1.49
Farde, R., & Linja, T. (2015). “It scares me to know that we might not have been there!”: A qualitative study into the experiences of parents of seriously ill children participating in ethical case discussion. BMC Medical Ethics, 16(40), 1-8. doi: 10.1186/s12910-015-0028-6
Freiermuth, C.E., Haywood, C., Silva, S., Cline, D.M., Kayle, M., Sullivan D., … Tanabe, P. (2014). Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers. Advanced Emergency Nursing Journal, 36(4), 335-347. doi: 10.1097/TME.0000000000000036
Gadamer, H-G. (1960/1989). Truth and method (2nd rev.ed.; J. Weinsheimer & D.G. Marshall, Trans.). New York, NY: Continuum.
Guilcher, G.M., Fernandez, C.V., & Joffe, S. (2015). Are hybrid umbilical cord blood banks really the best of both worlds? Journal of Medical Ethics, 41(3), 272-275. doi:10.1136/medethics-2013-101673
Hanik, M., Sackett, K.M., & Hartman, L.L. (2014). An educational module to improve healthcare staffs’ attitudes toward sickle cell disease patients. Journal of Nurses Professional Development, 30(5), 231-236. doi: 10.1097/NND.0000000000000058
Hsieh, M.M., Fitzhugh, C.D., Weitzel, R.P., Link, M.E., Coles, W.A., Zhao, X., … Tisdale, J.F. (2014). Nonmyeloablative HLA-matched sibling allogeneic hematopoietic stem cell transplantation for severe sickle cell phenotype. JAMA, 312(1), 48-56. doi:10.1001/ jama.2014.7192
Johnson, F.L., Look, A.T., Gockerman, J., Ruggiero, M.R., Dalla-Pozza, L., & Billings, F.T. (1984). Bone-marrow transplantation in a patient with sickle-cell anemia. New England Journal of Medicine, 311(12), 780-783. doi: 10.1056/NEJM198409203111207
Lee, A., Thomas, P., Cupidore, L., Serjeant, B, & Serjeant, G. (1995). Improved survival in homozygous sickle cell disease: Lessons from a cohort study. British Medical Journal, 311(7020), 1600-1602. doi: 10.1136/bmj.311.7020.1600
Madison, G.B. (1988). The hermeneutics of postmodernity: Figures and themes. Bloomington, IN: Indiana University Press. doi: 10.1017/S0012217300038695
McCaffrey, G., & Moules, N.J. (2016). Encountering the great problems in the street: Enacting hermeneutic philosophy as research in practice disciplines. Journal of Applied Hermeneutics, Article 1, 1-7. doi: http://hdl.handle.net/10515/sy5dv1d51
McLeod, D.L., Tapp, D.M., Moules, N. J., & Campbell, M. E. (2010). Knowing the family: Interpretations of family nursing in oncology and palliative care. European Journal of Oncology Nursing, 14(2), 93-100. doi: 10.1016/j.ejon.2009.09.006
Moules, N.J. (2002). Hermeneutic inquiry: Paying heed to history and Hermes. An ancestral, substantive, and methodological tale. International Journal of Qualitative Methods, 1(3), 1-
21. doi: 10.1177/160940690200100301
Moules, N.J., Jardine, D.W., McCaffrey, G., & Brown, C. (2013). “Isn’t all oncology hermeneutic?” Journal of Applied Hermeneutics, Article 3. doi:
http://hdl.handle.net/10515/sy5kd1qw9
Moules, N.J., McCaffrey, G., Morck, A.C., & Jardine, D.W. (2011). Editorial: On applied hermeneutics and the work of the world. Journal of Applied Hermeneutics, Editorial 1. doi: http://hdl.handle.net/10515/sy5kd1qw9
Moules, N.J., McCaffrey, G., Field, J., & Laing, C.M. (2015). Conducting hermeneutic research: From philosophy to practice. New York, NY: Peter Lang.
Nickel, R.S., Hendrickson, J.E., & Haight, A.E. (2014). The ethics of a proposed study of hematopoietic stem cell transplant for children with “less severe” sickle cell disease. Blood,
124(6), 861-866. doi: 10.1182/blood-2014-05-575209
Odame, I. (2014). Perspective: We need a global solution. Nature, 515(7526), S10. doi:10.1038/515S10a
Palermo, T.M., Valrie, C.R., & Karlson, C.W. (2014). Family and parent influences on pediatric chronic pain: A developmental perspective. The American Psychologist, 69(2), 142–152. doi: 10.1037/a0035216
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. New England Journal of Medicine, 330(23), 1639-1644. doi: 10.1056/NEJM199406093302303
Quinn, C. T. (2004). Survival of children with sickle cell disease. Blood, 103(11), 4023-4027. doi: 10.1182/blood-2003-11-3758
Quinn, C.T. (2013). Sickle cell disease in childhood: From newborn screening through transition to adult care. Pediatric Clinics of North America, 60(6), 1363-1381. doi: 10.1016/j.pcl.2013.09.006
Robinson, C.A. (1996). Health care relationships revisited. Journal of Family Nursing, 2(2), 152-173. doi: 10.1177/107484079600200204
Roth, M., Krystal, J., Manwani, D., Driscoll, C., & Ricafort, R. (2012). Stem cell transplant for children with sickle cell anemia: Parent and patient interest. Biology of Blood Marrow Transplant, 18(11), 1709-1715. doi: 10.1016/j.bbmt.2012.05.013
Serjeant, G.R. (2010). One hundred years of sickle cell disease. British Journal of Haematology, 151(5), 425-429. doi: 10.1111/j.1365-2141.2010.08419.x
Simons, L.E., Goubert, L., Vervoort, T., & Borsook, D. (2016). Circles of engagement: Childhood pain and the parent brain. Neuroscience & Behavioral Reviews, 68, 537-546. doi: 10.1016/j.neubiorev.2016.06.020
Thorne, S.E., & Robinson, C.A. (1989). Guarded alliance: Health care relationships in chronic illness. Image: The Journal of Nursing Scholarship, 21(3), 153-157. doi: 10.1111/j.1547-5069.1989.tb00122.x
Vermylen, C., Cornu, G., Philippe, M., Ninane, J., Borja, A., Latinne, D., … Sokal, G. (1991). Bone marrow transplantation in sickle cell anaemia. Archives of Disease in Childhood, 66, 1195-1198. doi: 10.1136/adc.66.10.1195
Vervoort, T., Trost, Z., Sutterlin, S., Caes, L., & Moors, A. (2014). Emotion regulatory function of parent attention to child pain and associated implications for parental pain control behaviour. Pain, 155(8), 1453–1463. doi: 10.1016/j.pain.2014.04.015
Walters, M.C., Patience, M., Leisenring, W., Eckman, J.R., Scott, J.P., Mentzer, W.C., … Sullivan, K.M. (1996). Bone marrow transplantation for sickle cell disease. New England Journal of Medicine, 335(6), 369-376. doi: 10.1056/NEJM199608083350601
Wright, L.M., & Bell, J.M. (2009). Beliefs and illness: A model for healing. Calgary, AB, Canada; 4th Floor Press.
Wright L.M., & Leahey, M. (1990, 1994, 2000, 2005, 2009, 2013). Nurses and families: A guide to family assessment and intervention (1st-6th eds.). Philadelphia, PA: F.A. Davis.
Wright, L.M., Watson, W.L., & Bell, J.M. (1996). Beliefs: The heart of healing in families and illness. New York, NY: Basic Books.
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