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Abstract
Introduction: Assuming the role of family caregivers for a prolonged period of people with kidney disease and on dialysis can lead to psychological exhaustion that makes the person inoperative and emotionally unstable; harming the health of the caregiver and the person cared for.
Objective: To explore the coping strategies and the context in which they are implemented by family caregivers of patients with kidney disease undergoing dialysis treatment to deal with overload.
Material and Method: Qualitative study with a descriptive-phenomenological design using individual semi-structured interviews. The Zarit Caregiver Burden Scale was used to initially determine the overload of family caregivers. Four family caregivers with higher heavy burden scores (>56 points) were selected at convenience. Sociodemographic data were collected. Thematic analysis was carried out according to the Colaizzi’s phenomenological method.
Results: Six main themes were identified: Starting as family caregivers, Family caregiver’s experiences, Perspectives as family caregivers, Overload and coping strategies, Needs of family caregivers and Care recipient. Adaptive coping strategies included: breathing exercises, prayer, and knitting. Caregivers also face a constant feeling of leaving everything, avoiding communication, and engaging in risky behaviors.
Conclusions: Family caregiver’s experiences require an interprofessional team to implement interventions to alleviate caregiver burden and thus broaden their framework
of strategies to improve the quality of life of the home care recipient.
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References
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- Yonte Huete F, Urién Pérez Z, Martín Gutiérrez M. Sobrecarga del cuidador principal. Rev enferm CyL. 2010;2(1):59-69.
- Aguilera AI, Castrillo EM, Linares B, Carnero RM, Alonso AC, López P et al. Análisis del perfil y la sobrecarga del cuidador de pacientes en Diálisis Peritoneal y Hemodiálisis. Enferm Nefrol. 2016 Oct- Dic;19(4):359-65.
- López García EP. Puesta al día: cuidador informal. Rev enferm CyL. 2016;8(1):71-7.
- Usman HB, Atif I, Rashid F, Waleed M, Arshad F, Qamar W et al. Assessment of caregiver burden of patients receiving dialysis treatment in Rawalpindi. J Pak Med Assoc. 2017 Oct;67(10):1498- 501.
- Descriptores en Ciencias de la Salud (DeCS). [Consultado 15 feb 2021]. Disponible en: http://decs2020.bvsalud.org/cgi-bin/wxis1660.exe/decsserver/.
- Crespo López M, Rivas MT. La evaluación de la carga del cuidador: una revisión más allá de la escala de Zarit. Clin salud. 2015;1:9-15.
- Williams LA, Graff JC, Wicks MN, Cowan PA, White-Means S, Tolley EA. Male caregivers of persons with end stage renal disease: A qualitative study. Nephrol Nurs J. 2017 May-Jun; 44(3):234-42.
- Polit DF, Tatano Beck C. Nursing research: Generating and assessing evidence for nursing practice. 9th ed. Philadelphia: Wolters Kluwer Health; 2012.
- Munhall P. Nursing Research: A qualitative perspective.5th ed. Toronto: Jones and Bartlett; 2012.
- Albarracín Rodríguez AP, Cerquera Córdoba AM, Pabón Poches DK. Escala de sobrecarga del cuidador Zarit: estructura factorial en cuidadores informales de Bucaramanga. Revista de Psicología. 2016;8(2):87-99.
- Pedraza AM, Rodríguez-Martínez CE, Acuña R. Validación inicial de una escala para medir el nivel de sobrecarga de padres o cuidadores de niños asmáticos. Biomédica. 2013;33:361-9.
- Nieswiadomy RM, Bailey C. Foundations of Nursing Research. 7th ed. Boston: Pearson; 2018.14. Shosha, GMA. Employment of Colaizzi’s Strategy in Descriptive Phenomenology: A Reflection of a Researcher. Eur Sci J. 2012;8(27):31-43.
- Morrow R, Rodriguez A, King N. Colaizzi’s descriptive phenomenological method. J Psychol. 2015 Aug;28(8):643-4.
- Cangiano JL. Salud Renal en Puerto Rico. Galenus. 2019;51(2).
- Khamis Alnazly E. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis. Hemodial Int. 2016;20:84-93.
- Cagan O, Unsal A, Celik N, Ture A, Culha I, Kok H. Care Burden of Caregivers of Hemodialysis Patients and Related Factors. Int J Caring Sci. 2018 Jan-Apr;11(1):279-84.
- Rabiei L, Ali Eslami A, Abedi H, Masoudi R, Reza Sharifirad G. Caring in an atmosphere of uncertainty: perspectives and experiences of caregivers of peoples undergoing hemodialysis in Iran. Scand J Caring Sci. 2016;30:594-601.
- Williams LA, Graff JC, Wicks MN, Cowan PA, White- Means S, Tolley EA. Male caregivers of persons with end stage renal disease: A qualitative study. Nephrol Nurs J. 2017 May-Jun;44(3):234-42.
- Guacas Guerra MA. Carga del cuidado de los cuidadores de personas con enfermedad renal crónica, sometidos a diálisis y hemodiálisis en una Unidad renal del municipio de Pasto en el periodo marzo - julio de 2014. UNIMAR. 2016.
- Ebadi A, Sajadi SA, Moradian ST, Akbari A. Suspended Life Pattern: A Qualitative Study on Personal Life Among Family Caregivers of Hemodialysis Patients in Iran. SAGE. 2018;0(0):1-8.
- Saborío Morales L, Hidalgo Murillo, LF. Síndrome de Burnout. Med leg Costa Rica. 2015 Mar; 32(1).
- Turner C, Finch-Guthrie P. Experiences of caregivers caring for a family member who is using hemodialysis. Nephrol Nurs J. 2020 Jan-Feb;47(1): 23-34.
- Gill AS, Singh A, Matreja PS, Gupta AK, Singh N, Khosla PP et al. Assessment of the Quality of Life of Caregiver’s of Patients Suffering from Chronic Kidney Disease. BANTAO J. 2011 Jan;9(1):31-5.
- Khamis Alnazly E. The impact of an educational intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and post test. Int J Nurs Sci. 2018 Mar;5:144-50.
- Teixidó-Planasa J, Tarrats Velascoa L, Arias Suáreza N, Cosculluela Masb A. Sobrecarga de los cuidadores de pacientes de diálisis peritoneal. Validación de cuestionario y baremos. Nefrología (Madr.). 2018 Oct;38(5):535-44.
- Bayoumi MM. Subjective Burden on Family Carers of Hemodialysis Patients. O J Neph. 2014 Jun;4:79-85.
- Mashayekhi F, Pilevarzadeh M, Rafati F. The Assessment of Caregiver Burden in Caregivers of Hemodialysis Patients. Mater Sociomed. 2015 Oct; 27(5):333-6.
- Tong A, Sainsbury P, Craig JC. Support interventions for caregivers of people with chronic kidney disease: A systematic review. Nephrol Dial Transplant. 2008 Jul;23(12):3960-5.
- Romero Massa E, Maccausland Segura Y, Solórzano Torrecila L. El cuidador familiar del paciente renal y su calidad de vida, Cartagena (Colombia). Salud Uninorte. 2014;30(2):146-57.
- Ghane G, Ashghali M, Seyedfatemi N, Haghani H. Effectiveness of Problem-Focused Coping Strategies on the Burden on Caregivers of Hemodialysis Patients. Nurs Midwifery Stud. 2016 Jun;5(2):1-11.
- Menati L, Torabi Y, Andayeshgar B, Khatony A. The Relationship Between Care Burden and Coping Strategies in Caregivers of Hemodialysis Patients in Kermanshah, Iran. Psychol Res Behav Manag. 2020 Feb;13:133-40.
- Alnazly, E. Coping Strategies and Socio-Demographic Characteristics among Jordanian Caregivers of Patients Receiving Hemodialysis. Saudi J Kidney Dis Transpl. 2016;27(1):101-6.
- Sajadi SA, Ebadi A, Moradian ST. Quality of Life among Family Caregivers of Patients on Hemodialysis and its Relevant Factors: A Systematic Review. Int J Community Based Nurs Midwifery. 2017;5(3):206-18.
References
Delgado I. Dramático aumento de nuevos casos de diálisis [Internet]. San Juan: El Nuevo Día. 2016 [Consultado sep 2018]. Disponible en: https://www.elnuevodia.com/estilosdevida/saludyejercicios/nota/dramaticoaumentodenuevoscasosdedialisis-2200013/.
Yonte Huete F, Urién Pérez Z, Martín Gutiérrez M. Sobrecarga del cuidador principal. Rev enferm CyL. 2010;2(1):59-69.
Aguilera AI, Castrillo EM, Linares B, Carnero RM, Alonso AC, López P et al. Análisis del perfil y la sobrecarga del cuidador de pacientes en Diálisis Peritoneal y Hemodiálisis. Enferm Nefrol. 2016 Oct- Dic;19(4):359-65.
López García EP. Puesta al día: cuidador informal. Rev enferm CyL. 2016;8(1):71-7.
Usman HB, Atif I, Rashid F, Waleed M, Arshad F, Qamar W et al. Assessment of caregiver burden of patients receiving dialysis treatment in Rawalpindi. J Pak Med Assoc. 2017 Oct;67(10):1498- 501.
Descriptores en Ciencias de la Salud (DeCS). [Consultado 15 feb 2021]. Disponible en: http://decs2020.bvsalud.org/cgi-bin/wxis1660.exe/decsserver/.
Crespo López M, Rivas MT. La evaluación de la carga del cuidador: una revisión más allá de la escala de Zarit. Clin salud. 2015;1:9-15.
Williams LA, Graff JC, Wicks MN, Cowan PA, White-Means S, Tolley EA. Male caregivers of persons with end stage renal disease: A qualitative study. Nephrol Nurs J. 2017 May-Jun; 44(3):234-42.
Polit DF, Tatano Beck C. Nursing research: Generating and assessing evidence for nursing practice. 9th ed. Philadelphia: Wolters Kluwer Health; 2012.
Munhall P. Nursing Research: A qualitative perspective.5th ed. Toronto: Jones and Bartlett; 2012.
Albarracín Rodríguez AP, Cerquera Córdoba AM, Pabón Poches DK. Escala de sobrecarga del cuidador Zarit: estructura factorial en cuidadores informales de Bucaramanga. Revista de Psicología. 2016;8(2):87-99.
Pedraza AM, Rodríguez-Martínez CE, Acuña R. Validación inicial de una escala para medir el nivel de sobrecarga de padres o cuidadores de niños asmáticos. Biomédica. 2013;33:361-9.
Nieswiadomy RM, Bailey C. Foundations of Nursing Research. 7th ed. Boston: Pearson; 2018.14. Shosha, GMA. Employment of Colaizzi’s Strategy in Descriptive Phenomenology: A Reflection of a Researcher. Eur Sci J. 2012;8(27):31-43.
Morrow R, Rodriguez A, King N. Colaizzi’s descriptive phenomenological method. J Psychol. 2015 Aug;28(8):643-4.
Cangiano JL. Salud Renal en Puerto Rico. Galenus. 2019;51(2).
Khamis Alnazly E. Burden and coping strategies among Jordanian caregivers of patients undergoing hemodialysis. Hemodial Int. 2016;20:84-93.
Cagan O, Unsal A, Celik N, Ture A, Culha I, Kok H. Care Burden of Caregivers of Hemodialysis Patients and Related Factors. Int J Caring Sci. 2018 Jan-Apr;11(1):279-84.
Rabiei L, Ali Eslami A, Abedi H, Masoudi R, Reza Sharifirad G. Caring in an atmosphere of uncertainty: perspectives and experiences of caregivers of peoples undergoing hemodialysis in Iran. Scand J Caring Sci. 2016;30:594-601.
Williams LA, Graff JC, Wicks MN, Cowan PA, White- Means S, Tolley EA. Male caregivers of persons with end stage renal disease: A qualitative study. Nephrol Nurs J. 2017 May-Jun;44(3):234-42.
Guacas Guerra MA. Carga del cuidado de los cuidadores de personas con enfermedad renal crónica, sometidos a diálisis y hemodiálisis en una Unidad renal del municipio de Pasto en el periodo marzo - julio de 2014. UNIMAR. 2016.
Ebadi A, Sajadi SA, Moradian ST, Akbari A. Suspended Life Pattern: A Qualitative Study on Personal Life Among Family Caregivers of Hemodialysis Patients in Iran. SAGE. 2018;0(0):1-8.
Saborío Morales L, Hidalgo Murillo, LF. Síndrome de Burnout. Med leg Costa Rica. 2015 Mar; 32(1).
Turner C, Finch-Guthrie P. Experiences of caregivers caring for a family member who is using hemodialysis. Nephrol Nurs J. 2020 Jan-Feb;47(1): 23-34.
Gill AS, Singh A, Matreja PS, Gupta AK, Singh N, Khosla PP et al. Assessment of the Quality of Life of Caregiver’s of Patients Suffering from Chronic Kidney Disease. BANTAO J. 2011 Jan;9(1):31-5.
Khamis Alnazly E. The impact of an educational intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and post test. Int J Nurs Sci. 2018 Mar;5:144-50.
Teixidó-Planasa J, Tarrats Velascoa L, Arias Suáreza N, Cosculluela Masb A. Sobrecarga de los cuidadores de pacientes de diálisis peritoneal. Validación de cuestionario y baremos. Nefrología (Madr.). 2018 Oct;38(5):535-44.
Bayoumi MM. Subjective Burden on Family Carers of Hemodialysis Patients. O J Neph. 2014 Jun;4:79-85.
Mashayekhi F, Pilevarzadeh M, Rafati F. The Assessment of Caregiver Burden in Caregivers of Hemodialysis Patients. Mater Sociomed. 2015 Oct; 27(5):333-6.
Tong A, Sainsbury P, Craig JC. Support interventions for caregivers of people with chronic kidney disease: A systematic review. Nephrol Dial Transplant. 2008 Jul;23(12):3960-5.
Romero Massa E, Maccausland Segura Y, Solórzano Torrecila L. El cuidador familiar del paciente renal y su calidad de vida, Cartagena (Colombia). Salud Uninorte. 2014;30(2):146-57.
Ghane G, Ashghali M, Seyedfatemi N, Haghani H. Effectiveness of Problem-Focused Coping Strategies on the Burden on Caregivers of Hemodialysis Patients. Nurs Midwifery Stud. 2016 Jun;5(2):1-11.
Menati L, Torabi Y, Andayeshgar B, Khatony A. The Relationship Between Care Burden and Coping Strategies in Caregivers of Hemodialysis Patients in Kermanshah, Iran. Psychol Res Behav Manag. 2020 Feb;13:133-40.
Alnazly, E. Coping Strategies and Socio-Demographic Characteristics among Jordanian Caregivers of Patients Receiving Hemodialysis. Saudi J Kidney Dis Transpl. 2016;27(1):101-6.
Sajadi SA, Ebadi A, Moradian ST. Quality of Life among Family Caregivers of Patients on Hemodialysis and its Relevant Factors: A Systematic Review. Int J Community Based Nurs Midwifery. 2017;5(3):206-18.