A experiência de cuidar vista pelos olhos de homens e mulheres: uma revisão integrativa

Autores

DOI:

https://doi.org/10.5294/aqui.2023.23.4.5

Palavras-chave:

Cuidadores, acontecimentos que mudam a vida, doença crônica, empatia, saúde mental

Resumo

Introdução: a necessidade de cuidados aumentou exponencialmente nos últimos anos, associada a doenças crônicas não transmissíveis. Os cuidadores têm sido principalmente mulheres, embora nos últimos anos tenha havido um crescimento no número de homens que assumem essa função. Cada um deles aborda o cuidado de forma distinta, construindo sua experiência de cuidado de forma diferente um do outro. Objetivo: identificar, por meio de evidências científicas, o significado de ser um cuidador para homens e mulheres que assumem essa função. Materiais e método: foi realizada uma revisão integrativa da literatura, seguindo a proposta de Whittemore e Knafl, de artigos publicados de 2012 a 2023. Foram utilizadas palavras-chave em espanhol, inglês e português. As bases de dados consultadas foram Scopus, CINAHL, Web of Science, Ovid e PubMed. Foram analisados 24 artigos que atenderam aos critérios de inclusão. Resultados: emergiram os seguintes temas: “Perdas e limitações devido ao papel do cuidador”, “Sentimentos vivenciados pelo cuidador”, “Cuidar como um ato de amor” e “Transcendência do cuidado: entre a espiritualidade e a religiosidade”. Conclusões: verificou-se que os homens concentram seus cuidados no conforto, na limpeza e na medicação da pessoa cuidada. As mulheres prestam cuidados com foco no apoio emocional incessante, assumindo essa disposição em todos os momentos e lugares, construindo uma experiência de cuidado voltada para “estar sempre atenta”. Em ambos os gêneros, destaca-se a ocorrência de estresse, perda de sentido da vida e sentimentos negativos.

Downloads

Não há dados estatísticos.

Referências

World Health Organization. Noncommunicable diseases [Internet]. Geneva; 2022 https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases

Dowou RK, Amu H, Saah FI, Arthur LE, Dotse PAN, Bain LE. Management of chronic non-communicable diseases in Ghana: a qualitative study of patients’ coping strategies and the role of caregivers. BMC Health Serv Res. 2023;23(1):371. https://doi.org/10.1186/s12913-023-09398-4

Geerlings AD, Kapelle WM, Sederel CJ, Tenison E, Wijngaards-Berenbroek H, Meinders MJ, et al. Caregiver burden in Parkinson’s disease: a mixed-methods study. BMC Med. 2023;21(1):247. https://doi.org/10.1186/s12916-023-02933-4

Vovlianou S, Koutlas V, Papoulidou F, Tatsis V, Milionis H, Skapinakis P, et al. Burden, depression and anxiety effects on family caregivers of patients with chronic kidney disease in Greece: a comparative study between dialysis modalities and kidney transplantation. Int Urol Nephrol. 2023;55(6):1619–28. https://doi.org/10.1007/s11255-023-03482-8

Carswell C, Brown JVE, Lister J, Ajjan RA, Alderson SL, Balogun-Katung A, et al. The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions. BMC Psychiatry. 2022;22(1):1–14. https://doi.org/10.1186/s12888-022-04117-5

Abaah D, Ohene LA, Adjei CA. Physical and social wellbeing of family caregivers of persons with hepatitis B associated chronic liver disease in Ghana: a qualitative study. BMC Primary Care. 2023;24(1):1–11. https://doi.org/10.1186/s12875-023-02041-5

Rossau HK, Kjerholt M, Brochmann N, Tang LH, Dieperink KB. Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study. J Clin Nurs. 2022;31(7–8):909–21. https://doi.org/10.1111/jocn.15944

Sousa H, Ribeiro O, Christensen AJ, Figueiredo D. Caring for parents with end-stage renal disease: What do adult children face and how do they cope? J Clin Nurs. 2022;31(23–24):3454–63. https://doi.org/10.1111/jocn.16172

Kent EE, Mollica MA, Buckenmaier S, Wilder Smith A. The Characteristics of Informal Cancer Caregivers in the United States. Semin Oncol Nurs. 2019;35(4):328–32. https://doi.org/10.1016/j.soncn.2019.06.002

Fernández Vega D, Lorenzo Ruiz A, Zaldivar Vaillant T. Carga en cuidadores informales primarios de personas adultas con enfermedades neurológicas crónicas. Rev Cub Salud Pública. 2019;45(2):e1510. https://scielosp.org/article/rcsp/2019.v45n2/e1510/es/

Ramírez Perdomo CA, Salazar Parra Y, Perdomo Romero AY. Calidad de vida de cuidadores de personas con secuelas de trastornos neurológicos. Revista Científica de la Sociedad Española de Enfermería Neurológica: SEDENE. 2017;(45):9–16. https://doi.org/10.1016/j.sedene.2016.12.002

Mamatsharaga IP, Mashau NS, Damian JU. I lack ‘me-time’: The experiences of family caregivers of elders with Diabetes Mellitus in a selected village in South Africa. Health SA Gesondheid. 2022;27:7. https://doi.org/10.4102/hsag.v27i0.2026

Niño de Guzmán Quispe E, Martínez García L, Orrego Villagrán C, Heijmans M, Sunol R, Fraile-Navarro D, et al. The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews. The Patient - Patient-Centered Outcomes Research. 2021;14(6):719–40. https://doi.org/10.1007/s40271-021-00514-2

Grandón Valenzuela D. Función económica de las ocupaciones feminizadas no remuneradas: una crítica desde la economía feminista. Revista Ocupación Humana. 2019;18(2):54–67. https://doi.org/10.25214/25907816.228

Miyawaki CE, Bouldin ED, Taylor CA, McGuire LC, Markides KS. Characteristics of Asian American Family Caregivers of Older Adults Compared to Caregivers of Other Racial/Ethnic Groups: Behavioral Risk Factor Surveillance System 2015–2020. Journal of Applied Gerontology. 2022;42(5):1101–7. https://doi.org/10.1177/07334648221146257

Cárdenas Ramos Z, Soto Higuera AI. Editorial: Familias en tiempos complejos de transición. Latinoamericana de Estudios de Familia. 2022;14(2):5–11. https://doi.org/10.17151/rlef.2022.14.2.1

Chi NC, Fu YK, Nakad L, Barani E, Gilbertson-White S, Tripp-Reimer T, et al. Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review. Journal of Palliative Medicine. 2022;25(12):1865–76. https://doi.org/10.1089/jpm.2020.0806

Taylor K. Care of the Caregiver. J Radiol Nurs. 2023;42(2):143–4. https://doi.org/10.1016/j.jradnu.2023.02.008

Bhan N, Rao N, Raj A. Gender differences in the associations between informal caregiving and wellbeing in low- And middle-income countries. J Womens Health. 2020;29(10):1328–38. https://doi.org/10.1089/jwh.2019.7769

Dijkxhoorn MA, Padmakar A, Bunders JFG, Regeer BJ. Stigma, lost opportunities, and growth: Understanding experiences of caregivers of persons with mental illness in Tamil Nadu, India. Transcult Psychiatry. 2023;60(2):255–71. https://doi.org/10.1177/13634615211059692

Wang YZ, Meng XD, Zhang TM, Weng X, Li M, Luo W, et al. Affiliate stigma and caregiving burden among family caregivers of persons with schizophrenia in rural China. International Journal of Social Psychiatry. 2023;69(4):1024–32. https://doi.org/10.1177/00207640231152206

Fernandes JB, Fernandes SB, Almeida AS, Cunningham RC. Barriers to Family Resilience in Caregivers of People Who Have Schizophrenia. Journal of Nursing Scholarship. 2021;53(4):393–39. https://doi.org/10.1111/jnu.12651

Rezayat F, Mohammadi E, Fallahi‐khoshknab M, Sharifi V. Experience and the meaning of stigma in patients with schizophrenia spectrum disorders and their families: A qualitative study. Japan Journal of Nursing Science. 2019;16(1):62–70. https://doi.org/10.1111/jjns.12212

Willert B, Minnotte KL. Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income. Appl Res Qual Life. 2021;16(3):943–64. https://doi.org/10.1007/s11482-019-09786-1

Bhatt J, Scior K, Stoner CR, Moniz-Cook E, Charlesworth Background G. Stigma among UK family carers of people living with dementia. BJPsych Open. 2022;8(6):e179. https://doi.org/10.1192/bjo.2022.585

Pudelewicz A, Talarska D, Bączyk G. Burden of caregivers of patients with Alzheimer’s disease. Scand J Caring Sci. 2019;33(2):336–41. https://doi.org/10.1111/scs.12626

Swinkels J, Tilburg T van, Verbakel E, Broese van Groenou M. Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers. J Gerontol B Psychol Sci Soc Sci. 2019;74(2):309–17. https://pubmed.ncbi.nlm.nih.gov/28379560/

Vitman-Schorr A, Ayalon L. The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers. J Fam Issues. 2020;41(11):2203–22. https://doi.org/10.1177/0192513X19898829

Fernández Lorca MB, Lay SL. Multiple roles and subjective well-being of middle-aged women who are caregivers of elderly people in Chile. J Women Aging. 2020;32(2):149–67. https://doi.org/10.1080/08952841.2018.1537690

Bristow SM, Jackson D, Power T, Usher K. “Rural mothers’ feelings of isolation when caring for a child chronic health condition: A phenomenological study”. Journal of Child Health Care. 2021;26(2):185–98. https://doi.org/10.1177/13674935211007324

Sabo K, Chin E. Self-care needs and practices for the older adult caregiver: An integrative review. Geriatr Nurs (Minneap). 2021;42(2):570–81. https://doi.org/10.1016/j.gerinurse.2020.10.013

Faronbi JO, Faronbi GO, Ayamolowo SJ, Olaogun AA. Caring for the seniors with chronic illness: The lived experience of caregivers of older adults. Arch Gerontol Geriatr. 2019;82:8–14. https://doi.org/10.1016/j.archger.2019.01.013

Haley WE, Roth DL, Hovater M, Clay OJ. Long-term impact of stroke on family caregiver well-being: A population-based case-control study. Neurology. 2015;84(13):1323–9. https://www.scopus.com/inward/record.uri?eid=2-s2.0-84937822039&doi=10.1212%2fWNL.0000000000001418&partnerID=40&md5=000e1be1664fd75ae62c577e339a2836

Secinti E, Wu W, Kent EE, Demark-Wahnefried W, Lewson AB, Mosher CE. Examining Health Behaviors of Chronic Disease Caregivers in the U.S. Am J Prev Med. 2022;62(3):e145–58. https://doi.org/10.1016/j.amepre.2021.07.004

Reddy S, Deshpande T, Pais P. Pos -742 health related quality of life (HRQOL) in paediatric chronic kidney disease (CKD) and caregiver burden (CB) – a prospective mixed-methods study. Kidney Int Rep. 2022;7(2, Suppl.):319–20. https://doi.org/10.1016/j.ekir.2022.01.777

Sanjuán-Quiles Á, Alcañiz-Garrán MDM, Montejano-Lozoya R, Ramos-Pichardo JD, García-Sanjuán S. The perspective of caregivers from a gender analysis. Rev Esp Salud Publica. 2023;97. https://europepmc.org/article/med/37415488

Wagner M, Brandt M. Long-term Care Provision and the Well-Being of Spousal Caregivers: An Analysis of 138 European Regions. The Journals of Gerontology: Series B. 2018;73(4):e24–34. https://doi.org/10.1093/geronb/gbx133

Fernández Torralbo CM, Cueto Torres I, Grande Gascón ML. Diferencias de carga en el cuidado asociadas al género. 2020;14(1). https://doi.org/10.4321/S1988-348X2020000100006

Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53. https://doi.org/10.1111/j.1365-2648.2005.03621.x

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. Declaración PRISMA 2020: una guía actualizada para la publicación de revisiones sistemáticas. Rev Esp Cardiol. 2021;74(9):790–9. http://www.revespcardiol.org/es-declaracion-prisma-2020-una-guia-articulo-S0300893221002748

Crossetti M da GO. Revisión integrativa de la investigación en enfermería, el rigor científico que se le exige. Rev Gaucha Enferm. 2012;33(2):10–1. https://doi.org/10.1590/S1983-14472012000200002

de Andrés Pizarro J. El análisis de estudios cualitativo. Aten Primaria. 2000;25(1):42–6. https://doi.org/10.1016/S0212-6567(00)78463-0

Santamaría Olmo R. Programa de Habilidades en Lectura Crítica Español (CASPe). Nefrología. 2017;9(1):100–1. https://www.revistanefrologia.com/es-programa-habilidades-lectura-critica-espanol-articulo-X1888970017612483

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. https://doi.org/10.1191/1478088706qp063oa

Steber AW, Skubik-Peplaski C, Causey-Upton R, Custer M. The Impact of Caring for Persons with Stroke on the Leisure Occupations of Female Caregivers. Phys Occup Ther Geriatr. 2017;35(3–4):169–81.https://doi.org/10.1080/02703181.2017.1350778

Grandón Valenzuela DE. Lo personal es político: un análisis feminista de la experiencia cotidiana de cuidadoras informales de personas adultas en situación de dependencia, en Santiago de Chile. Cadernos Brasileiros de Terapia Ocupacional. 2021;29:1–14. https://doi.org/10.1590/2526-8910.ctoao2161

Hashemi-Ghasemabadi M, Taleghani F, Kohan S, Yousefy A. Living under a cloud of threat: the experience of Iranian female caregivers with a first-degree relative with breast cancer. Psychooncology. 2017;26(5):625–31. https://doi.org/10.1002/pon.4198

Oliveira SG, Quintana AM, Denardin-Budó M de L, Luce-Kruse MH, Pötter Garcia R, Wünsh S, et al. Social representations of in-home caregivers of terminally ill patients: The family caregiver’s point of view. Aquichan. 2016;16(3):359–69. https://doi.org/10.5294/aqui.2016.16.3.7

Bower KL, Kemp CL, Burgess EO, Atkinson JL. Complexity of care: Stressors and strengths among low-income mother-daughter dyads. J Women Aging. 2020;32(2):131–48. https://doi.org/10.1080/08952841.2018.1537689

Gomes NP, Pedreira LC, Gomes NP, Fonseca E de OS, dos Reis LA, Santos A de A. Health-related consequences of caring for dependent relatives in older adult caregivers. Revista da Escola de Enfermagem da USP. 2019;53:e03446. https://doi.org/10.1590/s1980-220x2018002303446

Eriksson H, Sandberg J, Hellström I. Experiences of long-term home care as an informal caregiver to a spouse: Gendered meanings in everyday life for female carers. Int J Older People Nurs. 2013;8(2):159–65. https://doi.org/10.1111/j.1748-3743.2012.00340.x

Lopez V, Copp G, Molassiotis A. Male caregivers of patients with breast and gynecologic cancer: Experiences from caring for their spouses and partners. Cancer Nurs. 2012;35(6):402–10. https://doi.org/10.1097/NCC.0b013e318231daf0

Rykkje L, Tranvåg O. Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life. Sage Open. 2019;9(1). https://doi.org/10.1177/2158244019834453

Janze A, Henriksson A. Preparing for palliative caregiving as a transition in the awareness of death : family carer experiences. International Journal of Palliative Nursing. 2014;20(10):494–501. https://doi.org/10.12968/ijpn.2014.20.10.494

Zhang J, Lee DTF. Meaning in Stroke Family Caregiving in China: A Phenomenological Study. J Fam Nurs. 2019;25(2):260–86. https://doi.org/10.1177/1074840719841359

Couto AM do, Castro EAB de, Caldas CP. Experiences to be a family caregiver of dependent elderly in the home environment. Revista da Rede de Enfermagem do Nordeste. 2016;17(1):76. https://doi.org/10.15253/2175-6783.2016000100011

Rabiei L, Eslami AA, Abedi HA, Masoudi R, Sharifirad GR. Caring in an atmosphere of uncertainty: perspectives and experiences of caregivers of peoples undergoing haemodialysis in Iran. Scand J Caring Sci. 2016;30(3):594–601. https://doi.org/10.1111/scs.12283

Wennerberg MMT, Eriksson M, Lundgren SM, Danielson E. Unravelling Swedish informal caregivers’ Generalised Resistance Deficits. Scand J Caring Sci. 201832(1):186–96. https://doi.org/10.1111/scs.12446

Paillard-Borg S, Strömberg L. The Importance of Reciprocity for Female Caregivers in a Super-Aged Society: A Qualitative Journalistic Approach. Health Care Women Int. 2014;35:1365–77. https://doi.org/10.1080/07399332.2014.972408

Petruzzo A, Paturzo M, Naletto M, Cohen MZ, Alvaro R, Vellone E. The lived experience of caregivers of persons with heart failure : A phenomenological study. European Journal of Cardiovascular Nursing. 2017;16(7):638-645. https://doi.org/10.1177/1474515117707666

Bruce E, Lilja C, Sundin K. Mothers’ lived experiences of support when living with young children with congenital heart defects. Journal for Specialists in Pediatric Nursing. 2014;19(1):54–67. https://doi.org/10.1111/jspn.12049

Meshkinyazd A, Heydari A, Fayyazi M. Lived Experiences of Caregivers of Patients with Borderline Personality Disorder : A Phenomenological Study. Int J Community Based Nurs Midwifery. 2019;8(2):177–88. https://pubmed.ncbi.nlm.nih.gov/32309458/

Shukla S, McCoyd JLM. A phenomenology of informal caregiving for HIV/AIDS in India: Exploring women’s search for authoritative knowledge, self-efficacy and resilience. Health Care Women Int. 2018;39(7):755–70. https://doi.org/10.1080/07399332.2018.1462368

Sarris A, Augoustinos M, Williams N, Ferguson B. Caregiving work: The experiences and needs of caregivers in Australia. Health Soc Care Community. 2020;28(5):1764–71. https://doi.org/10.1111/hsc.13001

McDougall E, O’Connor M, Howell J. “Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia. Health Soc Care Community. 2018;26(4):572–80. https://doi.org/10.1111/hsc.12547

Meyer J, Cullough JM, Berggren I. Phenomenological study of living with a partner affected with dementia. Br J Community Nurs. 2016;21(1)24-30 https://pubmed.ncbi.nlm.nih.gov/26692133/

Hong SC, Coogle CL. Spousal Caregiving for Partners with Dementia: A Deductive Literature Review Testing Calasantis Gendered View of Care Work. Journal of Applied Gerontology. 2016;35(7):759–87. https://doi.org/10.1177/0733464814542246

Malmir S, Navipour H, Negarandeh R. Exploring challenges among Iranian family caregivers of seniors with multiple chronic conditions: a qualitative research study. BMC Geriatr. 2022;22(1):1–12. https://doi.org/10.1186/s12877-022-02881-3

Kim JS, Kim EH, An M. Experience of Dementia-related Anxiety in Middle-aged Female Caregivers for Family Members with Dementia: A Phenomenological Study. Asian Nurs Res (Korean Soc Nurs Sci). 2016;10(2):128–35. https://doi.org/10.1016/j.anr.2016.02.001

Publicado

2023-12-21

Como Citar

Caicedo Fajardo, D. J., Ramírez-Perdomo, C. A., & Sánchez Castro, L. F. (2023). A experiência de cuidar vista pelos olhos de homens e mulheres: uma revisão integrativa. Aquichan, 23(4), e2345. https://doi.org/10.5294/aqui.2023.23.4.5

Edição

Seção

Artigos

Dados de financiamento