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Abstract
Objective: To describe the uncertainty experiences of young people with renal failure with dialysis treatment. Material and Method: Ethnographic study in Guadalajara, Mexico. Twelve young people with renal failure and on peritoneal dialysis participated. Narrative interviews and participant observation were conducted. Hermeneutical analysis was performed. Results: Two types of uncertainty were identified: personal and medical. The sources of personal uncertainty were bodily changes, identity and role reconfiguration, lack of material resources and when thinking about future projects. The sources of medical uncertainty were lack of information, the initiation and management of treatment, and the progress of the disease. Conclusions: Uncertainty becomes a constant in the patients’ lives and management is influenced by the material resources and social supports they receive.
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References
- Glassock R, Warnock D, Delanaye P. The global burden of chronic kidney disease: estimates, variability and pitfalls. Nat Rev Nephrol. 2017;13(2):104-14. DOI: https://doi.org/10.1038/nrneph.2016.163
- Lozano R, Gómez-Dantés H, Garrido-Latorre F, Jiménez-Corona A, Campuzano-Rincón JC, Franco-Marina F, et al. La carga de enfermedad, lesiones, factores de riesgo y desafíos para el sistema de salud en México. Salud Publica Mex, 2013;55:580-94. DOI: https://doi.org/10.21149/spm.v55i6.7304
- Valdez-Ortiz R, Navarro-Reynoso F, Olvera-Soto MG, Martin-Alemañy G, Rodríguez-Matías A, Hernández-Arciniega CR, et al. Mortality in patients with chronic renal disease without health insurance in Mexico: opportunities for a national renal health policy. Kidney Int Rep, 2018;3(5):1171-82. DOI: https://doi.org/10.1016/j.ekir.2018.06.004
- Li PKT, Chow KM, Van de Luijtgaarden MW, Johnson DW, Jager K., Mehrotra R, et al. (2017). Changes in the worldwide epidemiology of peritoneal dialysis. Nat Rev Nephrol, 2017; 13(2):90-103. DOI: https://doi.org/10.1038/nrneph.2016.181
- Tong A, Morton R, Howard K, McTaggart S, Craig JC. “When I had my transplant, I became normal.” Adolescent perspectives on life after kidney transplantation. Pediatr Transplant. 2011;15(3):285-93.
- Nicholas DB, Picone G, & Selkirk EK. The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res. 2011; 21(2):162-73. DOI: https://doi.org/10.1177/1049732310382789
- Lewis H, Arber S. The role of the body in end-stage kidney disease in young adults: Gender, peer and intimate relationships. Chronic Illn. 2015;1(3):184-97. DOI: https://doi.org/10.1177/1742395314566823
- Díaz-Medina BA, Mercado-Martínez FJ. Obstáculos y estrategias de afrontamiento en la atención renal: estudio cualitativo en jóvenes con enfermedad renal crónica en diálisis peritoneal. Saúde Soc. 2019;28:275-86. DOI: https://doi.org/10.1590/s0104-12902019180724
- Conrad, P. Qualitative research on chronic illness: a commentary on method and conceptual development. Soc Sci Med. 1990; 30(11):1257-63. DOI: https://doi.org/10.1016/0277-9536(90)90266-U
- Kuang K, Wilson SR. A meta-analysis of uncertainty and information management in illness contexts. J Commun. 2017;67(3):378-401. DOI: https://doi.org/10.1111/jcom.12299
- Mishel M. Uncerainty in illness. J Nurs Scholarsh. 1998;20(4):225-32. DOI: https://doi.org/10.1111/j.1547-5069.1988.tb00082.x
- Penrod J. Advancing uncertainty: untangling and discerning related concepts. Int J Qual Methods, 2002;1(4):54-61. DOI: https://doi.org/10.1177/160940690200100407
- Tong A, Lesmana B, Johnson D, Wong G, Campell D, Craig JC. The perspectives of adults living with peritoneal dialysis: Thematic synthesis of qualitative studies. Am J Kidney Dis. 2013;61(6):873-88. DOI: https://doi.org/10.1053/j.ajkd.2012.08.045
- Curtin RB, Johnson HK, Schatell D. The peritoneal dialysis experience: insights from long-term patients. Nephrol Nurs J. 2004; 31(6):615-24.
- Baillie J, Lankshear A. Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study. J Clin Nurs. 2015;24(1-2):222-34. DOI: https://doi.org/10.1111/jocn.12663
- Tong A, Morton R, Howard K, McTaggart S, Craig J. “When I had my transplant, I became normal.” Adolescent perspectives on life after kidney transplantation. Pediatr Transplant. 2011;15(3): 285-93. DOI: https://doi.org/10.1111/j.1399-3046.2010.01470.x
- Mercado FJ. Entre el infierno y la gloria. La experiencia de la enfermedad en un barrio urbano. Guadalajara, México: Universidad de Guadalajara; 1996.
- Lindseth A, Norberg A. Phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci. 2004;18(2):145-53. DOI: https://doi.org/10.1111/j.1471-6712.2004.00258.x
- Martin SC, Stone AM, Scott AM, Brashers DE. Medical, personal, and social forms of uncertainty across the transplantation trajectory. Qual Health Res. 2010; 20 (2):182-96. DOI: https://doi.org/10.1177/1049732309356284
- Brashers DE, Neidig JL, Russell, JA, Cardillo LW, Haas SM, Dobbs LK, Garland M, McCartney B, Nemeth, S. The medical, personal, and social causes of uncertainty in HIV illness. Issues Ment Health Nurs. 2003;24(5):497-522. DOI: https://doi.org/10.1080/01612840305292
- Mercado-Martínez F, Hernández-Ibarra E, Ascencio-Mera C, Díaz-Medina B, Padilla-Altamira C, Kierans C. Viviendo con trasplante renal, sin protección social en salud: ¿Qué dicen los enfermos sobre las dificultades económicas que enfrentan y sus efectos?. Cad Saude Publica. 2014;30:2092-100. DOI: https://doi.org/10.1590/0102-311X00150713
- Santos FK, Valadares GV. Conhecendo o mundo do ser que enfrenta a diálise peritoneal: nexos simbólicos presentes no cotidiano. Revista Enfermagem UERJ. 2011;19(3):473-8.
- Knihs ND, Sartori DL, Zink V, Roza BD, Schirmer J. A vivência de pacientes que necessitam de transplante renal na espera por um órgão compatível. Texto Contexto Enferm. 2013;22(4): 1160-8. DOI: https://doi.org/10.1590/S0104-07072013000400035
- Lopes SG, Silva DM. Narratives of women on hemodialysis: waiting for a kidney transplant. Texto Contexto Enferm. 2014, 23(3):680-7. DOI: https://doi.org/10.1590/0104-07072014002540013
- Mercado-Martínez FJ, Urías-Vázquez JE. Enfermos renales hispanoamericanos en la época de las redes sociales virtuales: análisis de contenido de sus publicaciones, 2010-2012. Rev Panam Salud Publica. 2014;35(5/6):392-8.
References
Glassock R, Warnock D, Delanaye P. The global burden of chronic kidney disease: estimates, variability and pitfalls. Nat Rev Nephrol. 2017;13(2):104-14. DOI: https://doi.org/10.1038/nrneph.2016.163
Lozano R, Gómez-Dantés H, Garrido-Latorre F, Jiménez-Corona A, Campuzano-Rincón JC, Franco-Marina F, et al. La carga de enfermedad, lesiones, factores de riesgo y desafíos para el sistema de salud en México. Salud Publica Mex, 2013;55:580-94. DOI: https://doi.org/10.21149/spm.v55i6.7304
Valdez-Ortiz R, Navarro-Reynoso F, Olvera-Soto MG, Martin-Alemañy G, Rodríguez-Matías A, Hernández-Arciniega CR, et al. Mortality in patients with chronic renal disease without health insurance in Mexico: opportunities for a national renal health policy. Kidney Int Rep, 2018;3(5):1171-82. DOI: https://doi.org/10.1016/j.ekir.2018.06.004
Li PKT, Chow KM, Van de Luijtgaarden MW, Johnson DW, Jager K., Mehrotra R, et al. (2017). Changes in the worldwide epidemiology of peritoneal dialysis. Nat Rev Nephrol, 2017; 13(2):90-103. DOI: https://doi.org/10.1038/nrneph.2016.181
Tong A, Morton R, Howard K, McTaggart S, Craig JC. “When I had my transplant, I became normal.” Adolescent perspectives on life after kidney transplantation. Pediatr Transplant. 2011;15(3):285-93.
Nicholas DB, Picone G, & Selkirk EK. The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res. 2011; 21(2):162-73. DOI: https://doi.org/10.1177/1049732310382789
Lewis H, Arber S. The role of the body in end-stage kidney disease in young adults: Gender, peer and intimate relationships. Chronic Illn. 2015;1(3):184-97. DOI: https://doi.org/10.1177/1742395314566823
Díaz-Medina BA, Mercado-Martínez FJ. Obstáculos y estrategias de afrontamiento en la atención renal: estudio cualitativo en jóvenes con enfermedad renal crónica en diálisis peritoneal. Saúde Soc. 2019;28:275-86. DOI: https://doi.org/10.1590/s0104-12902019180724
Conrad, P. Qualitative research on chronic illness: a commentary on method and conceptual development. Soc Sci Med. 1990; 30(11):1257-63. DOI: https://doi.org/10.1016/0277-9536(90)90266-U
Kuang K, Wilson SR. A meta-analysis of uncertainty and information management in illness contexts. J Commun. 2017;67(3):378-401. DOI: https://doi.org/10.1111/jcom.12299
Mishel M. Uncerainty in illness. J Nurs Scholarsh. 1998;20(4):225-32. DOI: https://doi.org/10.1111/j.1547-5069.1988.tb00082.x
Penrod J. Advancing uncertainty: untangling and discerning related concepts. Int J Qual Methods, 2002;1(4):54-61. DOI: https://doi.org/10.1177/160940690200100407
Tong A, Lesmana B, Johnson D, Wong G, Campell D, Craig JC. The perspectives of adults living with peritoneal dialysis: Thematic synthesis of qualitative studies. Am J Kidney Dis. 2013;61(6):873-88. DOI: https://doi.org/10.1053/j.ajkd.2012.08.045
Curtin RB, Johnson HK, Schatell D. The peritoneal dialysis experience: insights from long-term patients. Nephrol Nurs J. 2004; 31(6):615-24.
Baillie J, Lankshear A. Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study. J Clin Nurs. 2015;24(1-2):222-34. DOI: https://doi.org/10.1111/jocn.12663
Tong A, Morton R, Howard K, McTaggart S, Craig J. “When I had my transplant, I became normal.” Adolescent perspectives on life after kidney transplantation. Pediatr Transplant. 2011;15(3): 285-93. DOI: https://doi.org/10.1111/j.1399-3046.2010.01470.x
Mercado FJ. Entre el infierno y la gloria. La experiencia de la enfermedad en un barrio urbano. Guadalajara, México: Universidad de Guadalajara; 1996.
Lindseth A, Norberg A. Phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci. 2004;18(2):145-53. DOI: https://doi.org/10.1111/j.1471-6712.2004.00258.x
Martin SC, Stone AM, Scott AM, Brashers DE. Medical, personal, and social forms of uncertainty across the transplantation trajectory. Qual Health Res. 2010; 20 (2):182-96. DOI: https://doi.org/10.1177/1049732309356284
Brashers DE, Neidig JL, Russell, JA, Cardillo LW, Haas SM, Dobbs LK, Garland M, McCartney B, Nemeth, S. The medical, personal, and social causes of uncertainty in HIV illness. Issues Ment Health Nurs. 2003;24(5):497-522. DOI: https://doi.org/10.1080/01612840305292
Mercado-Martínez F, Hernández-Ibarra E, Ascencio-Mera C, Díaz-Medina B, Padilla-Altamira C, Kierans C. Viviendo con trasplante renal, sin protección social en salud: ¿Qué dicen los enfermos sobre las dificultades económicas que enfrentan y sus efectos?. Cad Saude Publica. 2014;30:2092-100. DOI: https://doi.org/10.1590/0102-311X00150713
Santos FK, Valadares GV. Conhecendo o mundo do ser que enfrenta a diálise peritoneal: nexos simbólicos presentes no cotidiano. Revista Enfermagem UERJ. 2011;19(3):473-8.
Knihs ND, Sartori DL, Zink V, Roza BD, Schirmer J. A vivência de pacientes que necessitam de transplante renal na espera por um órgão compatível. Texto Contexto Enferm. 2013;22(4): 1160-8. DOI: https://doi.org/10.1590/S0104-07072013000400035
Lopes SG, Silva DM. Narratives of women on hemodialysis: waiting for a kidney transplant. Texto Contexto Enferm. 2014, 23(3):680-7. DOI: https://doi.org/10.1590/0104-07072014002540013
Mercado-Martínez FJ, Urías-Vázquez JE. Enfermos renales hispanoamericanos en la época de las redes sociales virtuales: análisis de contenido de sus publicaciones, 2010-2012. Rev Panam Salud Publica. 2014;35(5/6):392-8.