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Abstract
Introduction: The caregiver of a person on dialysis requires specific interventions aimed at self-care. Support group intervention is a strategy built in collaboration with individuals facing similar issues to share experiences and provide mutual support through planned actions.
Objective: To characterize caregivers of individuals on dialysis, understand their burden, and comprehend the meanings constructed through their participation in a support group.
Materials and Method: A mixed-methods descriptive study involving 68 caregivers was conducted. The quantitative phase utilized the instrument “Characterization Form of the Non-Communicable Chronic Disease-Patient Caregiver Dyad,” while the qualitative phase employed a hermeneutic phenomenological approach, consisting of 8 in-depth interviews.
Results: The majority of caregivers were women, with an average age of 49.4±13.5 years. A high percentage had low socioeconomic status and education levels, with their main occupation being homemaking. Most were married and practiced the Catholic religion, had been providing care for 14 months or more, had no previous caregiving experience, and received some form of support to carry out their tasks. Some degree of burden was identified among them. The analysis of the interviews revealed emerging themes: learning through caregiving, finding understanding and solidarity, supporting each other’s needs, sharing the hardships of caregiving, accompanying each other in spirituality, and reorganizing to continue caregiving.
Conclusions: Caregivers live in contexts that increase vulnerability, and for them, the support group provided a space for social support, well-being, accompaniment, and support from nursing care.
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Article Details
Copyright (c) 2023 Claudia Patricia Cantillo-Medina, María Elena Rodríguez-Vélez , Yenny Fernanda Jiménez-Moreno, Alix Yaneth Perdomo-Romero , Claudia Andrea Ramírez-Perdomo
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
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© Authors grant the publisher the non-exclusive licence to publish the work and consent to its use and distribution under the Creative Commons Attribution - NonCommercial 4.0 International (CC BY-NC 4.0) licence. Read the licensing information and the legal text here. This must be expressly stated wherever necessary.
Funding data
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Universidad Surcolombiana
Grant numbers NIT: 891180084-2
References
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References
Aoun S, Slatyer S, Deas K, Nekolaichuk C. Family Caregiver Participation in Palliative Care Research: Challenging the Myth. J Pain Symptom Manage [Internet]. 2017 [consultado 5 Jun 2022]; 53(5):851–61. Disponible en: http://www.sciencedirect.com/science/article/pii/S088539241631226X.
Webster AC, Nagler EV, Morton RL, Masson P. Chronic Kidney Disease. Lancet 2017;389(10075):1238-52.
Torres-Toledano M, Granados-García V, López-Ocaña LR. Global burden of disease of chronic kidney disease in México. Rev Med Inst Mex Seguro Soc 2017; 55(Supl 2):S118-23.
Pedreira LC, Ferreira A MC, Tadeu Reis Silva G, Silva R MdeO, Marques Freitas C. Older Brazilian caregivers and their lived experiences of caring—A hermeneutic phenomenological study. J Clin Nurs [Internet]. 2018 [consultado 3 May 2022]; 27(17–18):3314–23. Disponible en: https://www.scopus.com/inward/record.uri?eid=2-s2.085047647060&doi=10.1111%2Fjocn.107&partnerID=40&md5=c03b36e403e4075d1de64d7969d003b8.
Bray L, Carter B, Sanders C, Blake L, Keegan K. Parent-to-parent peer support for parents of children with a disability: A mixed method study. Patient Educ Couns 2017;100(8):1537-43.
Bailey DB Jr, Ventura LO. The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services. Pediatrics 2018;141(Suppl 2):S180-87.
Martínez Rodríguez L, Grau Valdés Y. Sentido personal del rol en cuidadores principales de pacientes en hemodiálisis en Cuba. Espacio I+D. Innov Desarrollo [Internet]. 2017 [consultado 2 Feb 2022]; VI (14): [aprox. 19 p.]. Disponible en: http://www.espacioimasd.unach.mx/articulos/num14/pdf/hemodialisis.pdf.
Clasificación de Intervenciones de Enfermería NIC (7ª Edición 2018): NIC: 007040 Apoyo al Cuidador Principal.
Laza-Vásquez, C, Rodríguez-Vélez ME, and Lasso-Conde, J. “Hablarse en plural”: significados del grupo de apoyo para mujeres con hijos(as) con microcefalia relacionada a la infección perinatal por virus Zika. CIAI 2019;2(2019):23-30.
Dickinson C, Dow J, Gibson G, Hayes L, Robalino S, Robinson L. Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. Int Psychogeriatr 2017;29(1):31-43.
Patton, MQ. (2014). Qualitative Research & Evaluation Methods: Integrating Theory and Practice. 4a ed. Sage, editor. London; 2015. p.1245.
Chaparro L, Sánchez B, Carrillo G. Encuesta de caracterización del cuidado de la díada cuidador familiar - persona con enfermedad crónica. Rev Cien Cuidad 2014;11(2):31-45.
Barreto R, Campos M, Carrillo G, Coral R, Chaparro L, Durán et al. Entrevista Percepción de Carga del Cuidado de Zarit: pruebas psicométricas para Colombia. Aquichan. 2015;15(3):368-80.
Hernández Sampieri R, Fernández Collado C, Baptista Lucio P. Metodología de la investigación. Ciudad de México: McGraw-Hill; 2014.
Lincoln YS, Guba EG. Naturalistic inquiry. Naturalistic inquiry. Beverly Hills, CA: Sage;1985. p. 331.
Finlay L. A dance between the reduction and reflexivity: Explicating the “phenomenological psychological attitude”. Journal of Phenomenological Psychology [Internet]. 2008 [consultado 7 Oct 2019]; 39(1):1–32. Disponible en: https://www.scopus.com/inward/record.uri?eid=2-s2.0-46049104712&doi=10.1163%2F156916208X311601&partnerID=40&md5=ae4b5cf6f9aaf88e10a1c64f8db2ceb9.
Clarke V, Braun V. Teaching thematic analysis: Overcoming challenges and developing strategies for effective learning. The Psychologist 2013;26:120-3.
Torres-Pinto X, Carreño-Moreno S, Chaparro-Díaz L. Factores que influencian la habilidad y sobrecarga del cuidador familiar del enfermo crónico. Rev Univ Ind Santander Salud [Internet]. 2017 [consultado 12 Oct 2022]; 49(2): 330-8. Disponible en: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0121-08072017000200330&lng=en.
Fernández Tijero MC. El origen de la mujer cuidadora: apuntes para el análisis hermenéutico de los primeros testimonios. Index Enferm [Internet]. 2016 [consultado 13 Feb 2022];25(1-2):93-7. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1132-12962016000100021&lng=es.
Perucca Gallegos D, Campos-Romero S, Márquez-Doren F. Experiencia de participar en un programa de apoyo al trabajador/cuidador familiar de adultos mayores dependientes. Gerokomos 2018;29(3):128-32.
Montoya Restrepo LA, Montoya Restrepo IA, Zabdiel Ocampo J, Sánchez Herrera B, Chaparro Diaz L. Diseño y validación de la encuesta “costo financiero del cuidado de la enfermedad crónica”. Rev Científica Salud Uninorte 2017;33(3):355-62.
González EF, Palma FS. Functional social support in family caregivers of elderly adults with severe dependence. Investig y Educ en Enferm 2016;34(1):68-73.
Vega Angarita OM, González Escobar DS. Soporte social percibido y competencia para el cuidado en el hogar, Ocaña, Colombia. Nova 2019;17(32):95-108.
Cole L, Kharwa Y, Khumalo N, Reinke JS, Karrim SBS. Caregivers of School-aged Children with Autism: Social Media as a Source of Support. J Child Fam Stud 2017;26(34):64-75.
Martin MAF, Ribeiro AF, Lee LC, Teixeira MCTV, Carreiro LRR. Grupo de Suporte Socioemocional para Pais de Crianças e Adolescentes com Síndrome de Williams. Cad Pós-Graduação em Distúrbios do Desenvolv 2016;16(1):35-45.
Beltrán E, Díaz D, Díaz C, Zarco L. Quality of life in patients with multiple sclerosis and their caregivers in Colombia: One-year follow-up. Biomédica 2020;40(1):129–36.
BuŽgová R, Kozáková R, Škutová M. Factors Influencing Health-Related Quality of Life of Patients with Multiple Sclerosis and Their Caregivers. Eur Neurol 2020;83(4):380–8.