Cuidando en el hogar a una persona con enfermedad cerebrovascular: del desconocimiento a la satisfacción

Fredy Tamayo-Botero; Mauricio Arias-Rojas; Stefany Ortega-Pérez

Fredy Tamayo-Botero Facultad de Enfermería. Universidad de Antioquia (Medellín, Colombia)
Mauricio Arias-Rojas Facultad de Enfermería. Universidad de Antioquia (Medellín, Colombia)
Stefany Ortega-Pérez Departamento de Enfermería. Universidad del Norte (Barranquilla, Colombia)

Palabras clave: Cuidadores, Accidente cerebrovascular, Cuidados de enfermería en el hogar, Teoría fundamentada

Key-words: Carer, Caregivers, Stroke, Home Nursing Care, Grounded Theory

Palavras chave: Cuidadores, Acidente vascular cerebral, Cuidados de enfermagem no domicílio, Teoria fundamentada

Resumen

Introducción: las enfermedades cerebrovasculares generan discapacidad y dependencia. Es el cuidador familiar quien asume la responsabilidad del cuidado diario de la persona con secuelas de esta enfermedad. El asumir este nuevo rol no es una actividad sencilla y requiere de preparación y acompañamiento. Objetivo: comprender la experiencia del cuidador familiar cuando asume por primera vez el cuidado en el hogar de una persona con secuelas de un accidente cerebrovascular. Metodología: estudio cualitativo con enfoque de teoría fundamentada. Participaron 16 cuidadores familiares. Se recolectó la información por entrevistas semiestructuradas. El análisis de los datos se hizo con codificación inicial, focalizada, axial y teórica. Resultados: se identificaron cinco categorías: Asumiendo el cuidado de mi familiar: una nueva experiencia, Cambiando el entorno: haciendo más fácil la experiencia, El apoyo de otros: sintiendo compañía en el cuidado, Sintiendo satisfacción: el resultado de un cuidado bien hecho y Viviendo el cuidado: entre el miedo, la fe y el amor. La categoría central se denominó Cuidando en el hogar: desde la falta de conocimiento a la satisfacción. Conclusiones: la experiencia de cuidar por primera vez representa para el cuidador familiar un reto para crear nuevas estrategias que favorezcan el cuidado de la persona. Los profesionales de enfermería tienen la responsabilidad de diseñar intervenciones de enfermería que atiendan las necesidades específicas de esta población

Abstract

Introduction: cerebrovascular diseases generate disability and dependence. It is the family caregiver who assumes responsibility for the daily care of the patient with sequelae of this disease. Assuming this new role is not an easy activity and requires preparation and accompaniment. Objective: to know the experience of the family caregiver when they first take care of a person with sequelae of a stroke at home. Methodology: qualitative study with a grounded theory approach. 16 family caregivers participated. The information was collected through semi-structured interviews. The data analysis was done with initial, focused, axial and theoretical coding. Results: five categories were identified: Taking care of my family: a new experience, Changing the environment: making the experience easier, Support from others: feeling company in care, Feeling satisfaction: the result of care well done and Living care: between fear, faith and love. The central category was called Caring at home: from lack of knowledge to satisfaction. Conclusions: the experience of caring for the first time represents a challenge for the family caregiver to create new strategies that favor caring for the person. Nursing professionals have the responsibility of designing nursing interventions that meet the specific needs of this population

Resumo

Introdução: as doenças cerebrovasculares geram incapacidade e dependência. É o cuidador familiar que assume a responsabilidade pelo cuidado diário ao pessoa com sequelas desta doença. Assumir este novo papel não é uma atividade fácil e requer preparação e acompanhamento. Objetivo: conhecer a vivência do cuidador familiar ao cuidar pela primeira vez de uma pessoa com sequela de AVE no domicílio. Metodologia: estudo qualitativo com abordagem teórica fundamentada. Participaram 16 cuidadores familiares. As informações foram coletadas por meio de entrevistas semiestruturadas. A análise dos dados foi realizada com codificação inicial, focada, axial e teórica. Resultados: foram identificadas cinco categorias: Cuidar do meu familiar: uma nova experiência, Mudar o ambiente: tornar a experiência mais fácil, O apoio dos outros: sentir-se companhia no cuidado, Sentir-se satisfeito: o resultado de um cuidado bem feito , Viver o cuidado: entre o medo, a fé e o amor. Conclusões: a experiência de cuidar pela primeira vez representa um desafio para o cuidador familiar criar novas estratégias que favoreçam o cuidar da pessoa. Os profissionais de enfermagem têm a responsabilidade de projetar intervenções de enfermagem que atendam às necessidades específicas desta população

Bibliografía

Camak, D. J. (2015). Addressing the burden of stroke caregivers: a literaturereview. Journal of Clinical Nursing, 24(17–18), 2376–2382. doi:https://doi.org/10.1111/jocn.12884
Caminha, C., Denubila, J., Marinho, D. (2018): Burden and Quality of Life ofFamily Caregivers of Stroke Patients, Occupational Therapy In Health Care. doi:https://doi.org/10.1080/07380577.2018.1449046
Caro, C. C., Costa, J. D., & Da Cruz, D. M. C. (2018). Burden and Quality of Lifeof Family Caregivers of Stroke Patients. Occupational Therapy in Health Care,32(2), 154–171. doi: https://doi.org/10.1080/07380577.2018.1449046
Carrillo, G. M., Arias-Rojas, M., Carreño, S. P., Gómez, O. J., López, R., &Cárdenas, D. C. (2018). Looking for Control at the End of Life Through the Bond:A grounded theory on the hospital discharge process in palliative care. Journal ofHospice and Palliative Nursing, 20(3), 296–303. doi: https://doi.org/10.1097/NJH.0000000000000447
Cecil, R., Parahoo, K., Thompson, K., McCaughan, E., Power, M., Campbell, Y.(2011). “The hard work starts now”: a glimpse into the lives of carers ofcommunity-dwelling stroke survivors. J Clin Nurs, 20(11– 12), 1723–30. doi:https://doi.org/10.1111/j.1365-2702.2010.03400.x
Cecil, R., Thompson, K., Parahoo, K., McCaughan, E. (2013). Towards anunderstanding of the lives of families affected by stroke: a qualitative study ofhome carers. Journal Adv Nurs, 69(8), 1761–70. doi:https://doi.org/10.1111/jan.12037
Charmaz, K. (2006). Constructing grounded theory: A practical guide throughqualitative analysis. London: sage.
Cheng, H. Y., Chair, S. Y., & Chau, J. P. C. (2018). Effectiveness of a strength-oriented psychoeducation on caregiving competence, problem-solving abilities,psychosocial outcomes and physical health among family caregiver of strokesurvivors: A randomised controlled trial. International Journal of NursingStudies, 87, 84–93. doi: https://doi.org/10.1016/j.ijnurstu.2018.07.005
Corbin, J., & Strauss, A. (2014). Basics of qualitative research: Techniques andprocedures for developing grounded theory. London: Sage publications.
D’Onofrio, G., Sancarlo, D., Addante, F., Ciccone, F., Cascavilla, L., Paris, F., …Pilotto, A. (2015). Caregiver burden characterization in patients with Alzheimer’sdisease or vascular dementia. International Journal of Geriatric Psychiatry,30(9), 891–899. doi: https://doi.org/10.1002/gps.4232
Dixe, M. D. A. C. R., da Conceição Teixeira, L. F., Areosa, T. J. T. C. C., Frontini,R.C., de Jesus Almeida Peralta, T., & Querido, A. I. F. (2019). Needs and skillsof informal caregivers to care for a dependent person: a cross-sectional study.BMC Geriatrics, 19(1), 255. doi: https://doi.org/10.1186/s12877-019-1274-0
Feigin, V. L., Nichols, E., Alam, T., Bannick, M. S., Beghi, E., Blake, N., … Vos,T.(2019). Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, 18(5), 459–480. doi: https://doi.org/10.1016/S1474-4422(18)30499-X
Denzin, N.K., & Lincoln, Y. (1994). Handbook of qualitative research. London:Sage.
Hare, R., Rogers, H., Lester, H., McManus, R., Mant, J. (2006). What do strokepatients and their carers want from community services? Fam Pract, 23(1), 131–6.doi: https://doi.org/10.1093/fampra/ cmi098
Jellema, S., Wijnen, M. A. M., Steultjens, E. M. J., Nijhuis-van der Sanden, M.W.G., & van der Sande, R. (2019). Valued activities and informal caregiving instroke: a scoping review. Disability and Rehabilitation, 41(18), 2223–2234. doi:https://doi.org/10.1080/09638288.2018.1460625
Khaku, A. S., & Tadi, P. (2021). Cerebrovascular Disease (Stroke). TreasureIsland: (FL)StatPearls Publishing.
Kim, H., Zhao, Y. L., Kim, N., & Ahn, Y. H. (2019). Home modifications forolder people with cognitive impairments: Mediation analysis of caregivers’information needs and perceptions of fall risks. International Journal of OlderPeople Nursing, 14(3), e12240. doi: https://doi.org/10.1111/opn.12240
Lauritzen, J., Pedersen, P. U., Sørensen, E. E., & Bjerrum, M. B. (2015). Themeaningfulness of participating in support groups for informal caregivers of olderadults with dementia: a systematic review. JBI Database of Systematic Reviewsand Implementation Reports, 13(6), 373–433. doi:https://doi.org/10.11124/jbisrir-2015-2121
Lynch, S. H., Shuster, G., & Lobo, M. L. (2018). The family caregiverexperience - examining the positive and negative aspects of compassionsatisfaction and compassion fatigue as caregiving outcomes. Aging & MentalHealth, 22(11), 1424–1431. doi: https://doi.org/10.1080/13607863.2017.1364344
Martinsen, R., Kirkevold, M., Sveen, U. (2015). Young and midlife strokesurvivors’ experiences with the health services and long-term follow-up needs.Journal of Neurosci Nurs, 47(1), 27–35. doi: https://doi.org/10.1097/JNN.0000000000000107
McCurley, J. L., Funes, C. J., Zale, E. L., Lin, A., Jacobo, M., Jacobs, J. M., …Vranceanu, A.-M. (2019). Preventing Chronic Emotional Distress in StrokeSurvivors and Their Informal Caregivers. Neurocritical Care, 30(3), 581–589.doi: https://doi.org/10.1007/s12028-018-0641-6
Okoye, E. C., Okoro, S. C., Akosile, C. O., Onwuakagba, I. U., Ihegihu, E. Y., &Ihegihu, C. C. (2019). Informal caregivers’ well-being and care recipients’ qualityof life and community reintegration - findings from a stroke survivor sample.Scandinavian Journal of Caring Sciences, 33(3), 641–650. doi:https://doi.org/10.1111/scs.12657
Ortega-Perez, S., Sanchez-Rubio, L., De las Salas, R., & Borja-Gonzalez, J.(2019). An International Perspective of Transition of Neurological Disease: TheLatin American and the Caribbean Region. Nursing Clinics of North America,54(3), 449–456. doi: https://doi.org/10.1016/j.cnur.2019.04.012
Pindus, D.M., Mullis, R., Lim, L., Wellwood, I., Rundell, A.V., Abd, N.A, et al.(2018) Stroke survivors’ and informal caregivers’ experiences of primary care andcommunity healthcare services – A systematic review and meta-ethnography.PLoS ONE, 13(2), e0192533. doi: https://doi.org/10.1371/ journal.pone.0192533
Rossinot, H., Marquestaut, O., & de Stampa, M. (2019). The experience ofpatients and family caregivers during hospital-at-home in France. BMC Health Services Research, 19(1), 470. doi: https://doi.org/10.1186/s12913-019-4295-7
Rouanet, C., & Silva, G. S. (2019). Aneurysmal subarachnoid hemorrhage:current concepts and updates. Arquivos de Neuro-Psiquiatria, 77(11), 806–814.doi: https://doi.org/10.1590/0004-282X20190112
Rubiano, A. M., Carney, N., Chesnut, R., & Puyana, J. C. (2015). Globalneurotrauma research challenges and opportunities. Nature, 527(7578), S193-7.doi: https://doi.org/10.1038/nature16035
Tsai, P. C., Yip, P. K., Tai, J. J., & Lou, M. F. (2015). Needs of family caregiversof stroke patients: a longitudinal study of caregivers' perspectives. Patientpreference and adherence, 9, 449–457. doi: https://doi.org/10.2147/PPA.S77713
Wray, F., Clarke, D., & Forster, A. (2019). How do stroke survivors withcommunication difficulties manage life after stroke in the first year? A qualitativestudy. International Journal of Language and Communication Disorders, 54(5),814–827. doi: https://doi.org/10.1111/1460-6984.12487
Yanez, N., Useche, J. N., Bayona, H., Porras, A., & Carrasquilla, G. (2020).Analyses of Mortality and Prevalence of Cerebrovascular Disease in Colombia,South America (2014-2016): A Cross-Sectional and Ecological Study. Journal ofStroke and Cerebrovascular Diseases : The Official Journal of National StrokeAssociation, 29(5), 104699. doi:https://doi.org/10.1016/j.jstrokecerebrovasdis.2020.104699

Cuidando en el hogar a una persona con enfermedad cerebrovascular: del desconocimiento a la satisfacción

Caring a Person with Cerebrovascular disease at home: from the lack knowledge to satisfaction

Cuidando de uma pessoa com doença cerebrovascular em casa: da ignorância à satisfação

Resumen

Abstract

Resumo

Bibliografía