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Copyright (c) 2020 Mauricio Arias-Rojas, Sonia Carreño Moreno, Edith Arredondo Holgín
This work is licensed under a Creative Commons Attribution 4.0 International License.
Incertidumbre y calidad de vida en cuidadores familiares de personas con cáncer en cuidado paliativo
Corresponding Author(s) : Mauricio Arias-Rojas
Ciencia e Innovación en Salud,
2020
Abstract
Introduction: The objective of this study was to describe the relationships between the caregiver's dedication to care work, the uncertainty of the disease and the quality of life of family caregivers of people with cancer in palliative care.
Methods: Descriptive correlational and cross-sectional study, carried out with 127 family caregivers selected through intentional sampling in two health institutions in Bogotá-Colombia, to which the care characterization, uncertainty regarding disease and caregiver quality of life questionnaires were applied. For statistical inferential analysis, Pearson's coefficient correlations were used after the normality test.
Results: For the correlations, a Pearson coefficient of r = -0.27 was established with a p < 0.002 between uncertainty and quality of life; Negative correlations also emerged between the dimensions of psychological and social well-being with inconsistency (r = -0.27 p < 0.01 and r = -0.19 p < 0.05, respectively) and between social well-being and the complexity of the uncertainty scale (r = -0.2 p < 0.05). Of the characteristics of care, only a negative correlation was found between physical well-being and the time the caregiver has been in this role (r = -0.18 p < 0.05).
Conclusions: The value of the correlations indicate that they are significant but weak given the multidimensionality of the phenomena. Inverse associations indicate that at higher levels of uncertainty, less perception of quality of life and vice versa.
Keywords
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- World Health Organization. Noncommunicable Diseases Country Profiles 2018. World Health Organization. Geneva; 2018. Disponible en: https://www.who.int/nmh/publications/ncd-profiles-2018/en/
- World Health Organization. Definition of Palliative Care. Disponible en: https://www.who.int/cancer/palliative/definition/en/#.%202015.%20p.%202015
- Garcia-Rueda N, Carvajal-Valcarcel A, Saracibar-Razquin M, Arantzamendi Solabarrieta M. The experience of living with advanced-stage cancer: a thematic synthesis of the literature. Eur J Cancer Care. 2016;25(4):551–69. DOI: 10.1111/ecc.12523
- Arias-Rojas M, Carreño–Moreno S, Chaparro L. Incertidumbre ante la enfermedad crónica. Revisión integrativa. Rev Latinoam Bioética. 2019;19(36–1):91-104. DOI: 10.18359/rlbi.3575
- Mishel MH. Theories of uncertainty in illness. In: Smith MJ, Patricia R. Liehr PDA, editors. Middle range theory for nursing. 3rd ed. New York: Springer Publishing Company; 2014. p. 53–86.
- Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their careers in the community. BMJ Br Med J. 2002;325:929–32. DOI: 10.1136/bmj.325.7370.929
- Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31. DOI: 10.1186/s12904-017-0206-z
- Fortier MA, Batista ML, Wahi A, Kain A, Strom S, Sender LS. Illness uncertainty and quality of life in children with cancer. J Pediatr Hematol Oncol. 2013;35(5):366–70. DOI: 10.1097/MPH.0b013e318290cfdb
- Delis PC. Uncertainty and quality of life in systemic lupus erythematosus: a cross-sectional study. Rehabil Nurs. 2019;44(1):2-10. DOI: 10.1097/rnj.0000000000000118
- Zhang Y. Uncertainty in Illness: theory review, application, and extension. Oncol Nurs Forum. 2017;44(6):645–9. DOI: 10.1188/17.ONF.645-649
- Grove S, Gray J. Understanding Nursing Research. Building an Evidence-Based Practice. 7th editio. Missouri, EEUU.: Elsevier; 2019. 652 p.
- Chaparro-Diaz L, Sánchez B, Carrillo-Gonzalez GM. Encuesta de caracterización del cuidado de la diada cuidadorfamiliar - persona con enfermedad crónica. Rev Cienc y Cuid. 2015;11(2):31–45. DOI: 10.22463/17949831.196
- Arias-Rojas M, Carreño-Moreno S, Lopez JR. Validación de la escala de incertidumbre ante la enfermedad en cuidadores de pacientes en cuidado paliativo. Med Paliativa. 2019;26(4):265-271. DOI: 10.20986/medpal.2019.1021/2018
- Barrera OL, Carrillo GG, Chaparro DL, Sánchez Herrera B, Vargas RE, Carreño MS. Validez de constructo y confiabilidad del instrumento calidad de vida versión familiar en español. Enferm. glob. 2015;14(37):227–38. Disponible en : http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1695-61412015000100013&lng=es
- Gray JR, Grove SK, Sutherland S. The practice of nursing research: appraisal, synthesis, and generation of evidence. 8th ed. St. Louis, Missouri: Elsevier; 2016.
- Rizo VA, Molina LM, Milián MN, Pagán MP, Machado GJ. Caracterización del cuidador primario de enfermo oncológico en estado avanzado. Rev Cuba Med Gen Integr. 2016;32(3):1–13.
- Arias-Rojas M, Carreño–Moreno S, Posada C. Uncertainty in illness in family caregivers of palliative care patients and associated factors. Rev Latino-Am Enferm. 2019;27:e3200. DOI: 10.1590/1518-8345.3185.3200
- Alvarado GA. Adquiriendo habilidad en el cuidado: “De la incertidumbre al nuevo compromiso”. Aquichan.2009;7(1):25-36. https://aquichan.unisabana.edu.co/index.php/aquichan/article/view/95/195
- Florez TI, Montalvo PA, Romero ME. Incertidumbre en cuidadores familiares de pacientes hospitalizados en unidades de cuidado intensivo. Investigación en Enfermería Imagen y Desarrollo . 2018;20(1). DOI: 10.11144/Javeriana.ie20-1.icfp
- Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9:17. DOI: 10.1186/1472-684X-9-17
- Norinder M, Goliath I, Alvariza A. Patients’ experiences of care and support at home after a family member’s participation in an intervention during palliative care. Palliat Support Care. 2017;15(3):305–12. DOI: 10.1017/S1478951516000729
- Steinhauser KE, Fitchett G, Handzo GF, Johnson KS, Koenig HG, Pargament KI, et al. State of the science of spirituality and palliative care research part I: definitions, measurement, and outcomes. J Pain Symptom Manage. 2017;54(3):428–40. DOI: 10.1016/j.jpainsymman.2017.07.028
- Coca S, Ramos F, Fernández R. Calidad de vida en los cuidadores familiares de pacientes con enfermedad terminal, bajo un programa de cuidados paliativos domiciliarios. Rev salud pública. 2017;XXI(3):22–34. DOI: 10.31052/1853.1180.v21.n3.17386
- Götze H, Brähler E, Gansera L, Schnabel A, Gottschalk-Fleischer A, Köhler N. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care. 2018;27(2):1–8. DOI: 10.1111/ecc.12606
- Barragán BJ. Necesidades de cuidado de la diada cuidador-persona: Expectativa de cambio en intervenciones de Enfermería. Rev Cuid. 2014;5(2):578-756. DOI: 10.15649/cuidarte.v5i2.87
- Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9. DOI: 10.1002/cncr.29223
- DK, Fortier MA, Osann K, Wilford J, Shen V, Torno L, et al. Quality of life among parents of adolescent and young adult brain tumor survivors. J Pediatr Hematol Oncol. 2017;39(8):579–84. DOI: 10.1097/MPH.0000000000000947
- Kershaw S, Mood DW, Newth G, Ronis DL, Sanda MG, Vaishampayan U, et al. Longitudinal analysis of a model to predict quality of life in prostate cancer patients and their spouses. Ann Behav Med. 2008;36(2):117–28. DOI: 10.1007/s12160-008-9058-3
- Hurt CS, Cleanthous S, Newman S. Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease. Psychol Health. 2017;32(5):549–66. DOI: 10.1080/08870446.2017.1283041
- Kepic M, Randolph A, Hermann-Turner KM. Care for Caregivers: understanding the need for caregiver support. Adultspan J. 2019;18(1):40–51. DOI: 10.1002/adsp.12068
References
World Health Organization. Noncommunicable Diseases Country Profiles 2018. World Health Organization. Geneva; 2018. Disponible en: https://www.who.int/nmh/publications/ncd-profiles-2018/en/
World Health Organization. Definition of Palliative Care. Disponible en: https://www.who.int/cancer/palliative/definition/en/#.%202015.%20p.%202015
Garcia-Rueda N, Carvajal-Valcarcel A, Saracibar-Razquin M, Arantzamendi Solabarrieta M. The experience of living with advanced-stage cancer: a thematic synthesis of the literature. Eur J Cancer Care. 2016;25(4):551–69. DOI: 10.1111/ecc.12523
Arias-Rojas M, Carreño–Moreno S, Chaparro L. Incertidumbre ante la enfermedad crónica. Revisión integrativa. Rev Latinoam Bioética. 2019;19(36–1):91-104. DOI: 10.18359/rlbi.3575
Mishel MH. Theories of uncertainty in illness. In: Smith MJ, Patricia R. Liehr PDA, editors. Middle range theory for nursing. 3rd ed. New York: Springer Publishing Company; 2014. p. 53–86.
Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their careers in the community. BMJ Br Med J. 2002;325:929–32. DOI: 10.1136/bmj.325.7370.929
Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31. DOI: 10.1186/s12904-017-0206-z
Fortier MA, Batista ML, Wahi A, Kain A, Strom S, Sender LS. Illness uncertainty and quality of life in children with cancer. J Pediatr Hematol Oncol. 2013;35(5):366–70. DOI: 10.1097/MPH.0b013e318290cfdb
Delis PC. Uncertainty and quality of life in systemic lupus erythematosus: a cross-sectional study. Rehabil Nurs. 2019;44(1):2-10. DOI: 10.1097/rnj.0000000000000118
Zhang Y. Uncertainty in Illness: theory review, application, and extension. Oncol Nurs Forum. 2017;44(6):645–9. DOI: 10.1188/17.ONF.645-649
Grove S, Gray J. Understanding Nursing Research. Building an Evidence-Based Practice. 7th editio. Missouri, EEUU.: Elsevier; 2019. 652 p.
Chaparro-Diaz L, Sánchez B, Carrillo-Gonzalez GM. Encuesta de caracterización del cuidado de la diada cuidadorfamiliar - persona con enfermedad crónica. Rev Cienc y Cuid. 2015;11(2):31–45. DOI: 10.22463/17949831.196
Arias-Rojas M, Carreño-Moreno S, Lopez JR. Validación de la escala de incertidumbre ante la enfermedad en cuidadores de pacientes en cuidado paliativo. Med Paliativa. 2019;26(4):265-271. DOI: 10.20986/medpal.2019.1021/2018
Barrera OL, Carrillo GG, Chaparro DL, Sánchez Herrera B, Vargas RE, Carreño MS. Validez de constructo y confiabilidad del instrumento calidad de vida versión familiar en español. Enferm. glob. 2015;14(37):227–38. Disponible en : http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1695-61412015000100013&lng=es
Gray JR, Grove SK, Sutherland S. The practice of nursing research: appraisal, synthesis, and generation of evidence. 8th ed. St. Louis, Missouri: Elsevier; 2016.
Rizo VA, Molina LM, Milián MN, Pagán MP, Machado GJ. Caracterización del cuidador primario de enfermo oncológico en estado avanzado. Rev Cuba Med Gen Integr. 2016;32(3):1–13.
Arias-Rojas M, Carreño–Moreno S, Posada C. Uncertainty in illness in family caregivers of palliative care patients and associated factors. Rev Latino-Am Enferm. 2019;27:e3200. DOI: 10.1590/1518-8345.3185.3200
Alvarado GA. Adquiriendo habilidad en el cuidado: “De la incertidumbre al nuevo compromiso”. Aquichan.2009;7(1):25-36. https://aquichan.unisabana.edu.co/index.php/aquichan/article/view/95/195
Florez TI, Montalvo PA, Romero ME. Incertidumbre en cuidadores familiares de pacientes hospitalizados en unidades de cuidado intensivo. Investigación en Enfermería Imagen y Desarrollo . 2018;20(1). DOI: 10.11144/Javeriana.ie20-1.icfp
Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9:17. DOI: 10.1186/1472-684X-9-17
Norinder M, Goliath I, Alvariza A. Patients’ experiences of care and support at home after a family member’s participation in an intervention during palliative care. Palliat Support Care. 2017;15(3):305–12. DOI: 10.1017/S1478951516000729
Steinhauser KE, Fitchett G, Handzo GF, Johnson KS, Koenig HG, Pargament KI, et al. State of the science of spirituality and palliative care research part I: definitions, measurement, and outcomes. J Pain Symptom Manage. 2017;54(3):428–40. DOI: 10.1016/j.jpainsymman.2017.07.028
Coca S, Ramos F, Fernández R. Calidad de vida en los cuidadores familiares de pacientes con enfermedad terminal, bajo un programa de cuidados paliativos domiciliarios. Rev salud pública. 2017;XXI(3):22–34. DOI: 10.31052/1853.1180.v21.n3.17386
Götze H, Brähler E, Gansera L, Schnabel A, Gottschalk-Fleischer A, Köhler N. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care. 2018;27(2):1–8. DOI: 10.1111/ecc.12606
Barragán BJ. Necesidades de cuidado de la diada cuidador-persona: Expectativa de cambio en intervenciones de Enfermería. Rev Cuid. 2014;5(2):578-756. DOI: 10.15649/cuidarte.v5i2.87
Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9. DOI: 10.1002/cncr.29223
DK, Fortier MA, Osann K, Wilford J, Shen V, Torno L, et al. Quality of life among parents of adolescent and young adult brain tumor survivors. J Pediatr Hematol Oncol. 2017;39(8):579–84. DOI: 10.1097/MPH.0000000000000947
Kershaw S, Mood DW, Newth G, Ronis DL, Sanda MG, Vaishampayan U, et al. Longitudinal analysis of a model to predict quality of life in prostate cancer patients and their spouses. Ann Behav Med. 2008;36(2):117–28. DOI: 10.1007/s12160-008-9058-3
Hurt CS, Cleanthous S, Newman S. Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease. Psychol Health. 2017;32(5):549–66. DOI: 10.1080/08870446.2017.1283041
Kepic M, Randolph A, Hermann-Turner KM. Care for Caregivers: understanding the need for caregiver support. Adultspan J. 2019;18(1):40–51. DOI: 10.1002/adsp.12068