Jóvenes cuidadores en Brasil: los retos de la responsabilidad prematura en el hogar
DOI:
https://doi.org/10.5294/aqui.2024.24.4.4Palabras clave:
Cuidadores, niños, adolescente, carga del cuidador, relaciones familiaresResumen
Introducción: el cuidado que prestan los jóvenes cuidadores puede entenderse como un proceso complejo debido a su multidimensionalidad, de modo que sus efectos y significados pueden trascender la mera atribución como cuidador. Objetivo: comprender cómo los jóvenes cuidadores perciben el cuidado a un familiar dependiente. Materiales y método: investigación exploratoria, cualitativa, guiada por la teoría fundamentada y el marco teórico del pensamiento complejo. Los datos fueron recogidos de 15 jóvenes cuidadores y siete familiares entre agosto de 2022 y octubre de 2023, en los domicilios de los jóvenes y familiares que cuidaban a un familiar dependiente, residentes en Brasil. Los datos fueron analizados en tres etapas: codificación abierta, axial y selectiva. Resultados: los datos analizados permitieron formular tres categorías temáticas: “Cuando la necesidad de cuidar se convierte de repente en una realidad”; “Convertirse en un joven cuidador: experiencias vividas”; “El día a día de un joven cuidador: tipos de cuidados, expectativas y percepciones”. Se observó que convertirse en un joven cuidador no era algo planificado, sino el resultado de un acontecimiento inesperado o de una enfermedad. Se observó que los cuidados prestados por los jóvenes cuidadores interferían en su vida académica, social y familiar, generando sobrecarga física y emocional. Conclusiones: la forma en que los jóvenes cuidadores atribuyen significado al cuidado de un familiar dependiente es amplia y está impregnada de sentimientos ambiguos, ya que al mismo tiempo que se sienten abrumados y avergonzados por desempeñar este rol y exponerlo a otras personas, manifiestan haber madurado y aumentado sus habilidades técnicas, emocionales y sociales.
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Santini S, D’amen B, Socci M, Di rosa M, Hanson E, Hlebec V. difficulties and needs of adolescent young caregivers of grandparents in Italy and Slovenia: A concurrent mixed-methods study. Int J Environ Res Pub Health [Internet]. 2022 [acesso 16 outubro 2023];19(5):2837. Disponível em: https://www.mdpi.com/1660-4601/19/5/2837 DOI: https://doi.org/10.3390/ijerph19052837
Nakanishi M, Stanyon D, Richards M, Yamasaki S, Ando S, Endo K et al. Informal caregiving in adolescents from 10 to 16 years old: A longitudinal study using data from the tokyo teen cohort. Int J Environ Res Pub Health [Internet]. 2023 [acesso 26 outubro 2023]; 20(15):6482. Disponível em: https://www.mdpi.com/1660-4601/20/15/6482 DOI: https://doi.org/10.3390/ijerph20156482
Warren JL. Young carers’ needs and changing experiences during an era of austerity. Int J Environ Res Pub Health [Internet]. 2023 [acesso 7 novembro 2023];20(4):3418. Disponível em: https://www.mdpi.com/1660-4601/20/4/3418 DOI: https://doi.org/10.3390/ijerph20043418
Matzka M, Nagl‐Cupal M. Psychosocial resources contributing to resilience in Austrian young carers: A study using photo novella. Res Nurs Health [Internet]. 2020 [acesso 14 dezembro 2023];43(6):629-39. Disponível em: https://onlinelibrary.wiley.com/doi/10.1002/nur.22085 DOI: https://doi.org/10.1002/nur.22085
Justin P, Dorard G, Untas A. Encountering young caregivers: Attitudes and practices of healthcare professionals caring for cancer patients. Psycho-Oncology [Internet]. 2023 [acesso 14 setembro 2023];32(6):913-22. Disponível em: https://onlinelibrary.wiley.com/doi/10.1002/pon.6131 DOI: https://doi.org/10.1002/pon.6131
Dharampal R, Ani C. The emotional and mental health needs of young carers: What psychiatry can do. BJPsych Bull [Internet]. 2019 [acesso 14 dezembro 2023];44(3):112-20. Disponível em: https://www.cambridge.org/core/journals/bjpsych-bulletin/article/emotional-and-mental-health-needs-of-young-carers-what-psychiatry-can-do/69A86D664B700FD8E478DB3298DE14B1 DOI: https://doi.org/10.1192/bjb.2019.78
Pope ND, Baldwin PK, Gibson A, Smith K. Becoming a caregiver: Experiences of young adults moving into family caregiving roles. J Adult Dev [Internet]. 2022 [acesso 15 maio 2024];29(2):147-58. Disponível em: https://link.springer.com/article/10.1007/s10804-021-09391-3 DOI: https://doi.org/10.1007/s10804-021-09391-3
Alfonzo LF, Disney G, Singh A, Simons K, King T. The effect of informal caring on mental health among adolescents and young adults in Australia: A population-based longitudinal study. Lancet Public Health [Internet]. 2024 [acesso 22 maio 2024]; 9(1):e26-e34. Disponível em: https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(23)00299-2/fulltext DOI: https://doi.org/10.1016/S2468-2667(23)00299-2
Newman K, Chalmers H, Ciotti S, Wang AZY, Luxmykanthan L. Voices from service providers who supported young caregivers throughout the COVID-19 pandemic in the Canadian context. Int J Environ Res Pub Health [Internet]. 2023 [acesso 14 dezembro 2023];20(15):6446. DOI: https://doi.org/10.3390/ijerph20156446
Leu A, Wepf H, Sempik J, Nagl-Cupal M, Becker S, Jung C, Frech M. Caring in mind? Professionals’ awareness of young carers and young adult carers in Switzerland. Health Soc Care Community [Internet]. 2020 [acesso 14 dezembro 2023];28(6):2390-8. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/hsc.13061 DOI: https://doi.org/10.1111/hsc.13061
D’Amen B, Socci M, Santini S. Intergenerational caring: A systematic literature review on young and young adult caregivers of older people. BMC Geriatr [Internet]. 2021 [acesso 15 outubro 2023];21(105):1-17. Disponível em: https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-020-01976-z DOI: https://doi.org/10.1186/s12877-020-01976-z
Morin E. Introdução ao pensamento complexo. 5ª ed. Porto Alegre: Sulina; 2015.
Corbin JM, Strauss AC. Basics of qualitative research: Techniques and procedures for developing grounded theory. 4ª ed. [S. l.]: Sage Publications, Incorporated; 2014.
Santini S, Socci M, D’Amen B, Di Rosa M, Casu G, Hlebec V et al. Positive and negative impacts of caring among adolescents caring for grandparents. Results from an online survey in six European countries and implications for future research, policy and practice. Int J Environ Res Pub Health [Internet]. 2020 [acesso 11 agosto 2023];17(18):6593. Disponível em: https://www.mdpi.com/1660-4601/17/18/6593 DOI: https://doi.org/10.3390/ijerph17186593
Sharpe L. Parentification: Identifying young caregivers at risk. J Nurse Pract [Internet]. 2024 [acesso 22 maio 2024];20(5):104930. Disponível em: https://www.npjournal.org/article/S1555-4155(24)00006-0/fulltext DOI: https://doi.org/10.1016/j.nurpra.2024.104930
Oh S, Yu M, Ryu YM, Kim H, Lee H. Changes in family dynamics in caregiving for people with dementia in South Korea: A qualitative meta-synthesis study. Qual Res Health [Internet]. 2019 [acesso 10 dezembro 2023];30(1):60-72. Disponível em: https://journals.sagepub.com/doi/10.1177/1049732319871254 DOI: https://doi.org/10.1177/1049732319871254
Bernardi MB, Gonçalves AS, Barbosa SGR, Bernal SCZ, Plantier GM, Rodrigues TFCS et al. Informal caregivers’ experience in role transition after dehospitalization. Cien Cuid Saúde [Internet]. 2022 [acesso 23 novembro 2023];21:e61823. Disponível em: https://periodicos.uem.br/ojs/index.php/CiencCuidSaude/article/view/61823 DOI: https://doi.org/10.4025/ciencuidsaude.v21i0.61823
Subramaniam A, Mehta KK. Exploring the lived experiences of caregiving for older family members by young caregivers in Singapore: Transition, trials, and tribulations. Int J Environ Res Pub Health [Internet]. 2024 [acesso 22 maio 2024];21(2):182. Disponível em: https://www.mdpi.com/1660-4601/21/2/182 DOI: https://doi.org/10.3390/ijerph21020182
Joseph S, Sempik J, Leu A, Becker S. Young carers research, practice and policy: An overview and critical perspective on possible future directions. Adolesc Res Rev [Internet]. 2019 [acesso 14 dezembro 2023];5(1):77-89. Disponível em: https://link.springer.com/article/10.1007/s40894-019-00119-9 DOI: https://doi.org/10.1007/s40894-019-00119-9
Paiva ACA. A fragilidade na estrutura familiar e seus impactos no desenvolvimento psicossocial infanto-juvenil. Pretextos [Internet]. 2019 [acesso 14 dezembro 2023];4(7). Disponível em: https://periodicos.pucminas.br/index.php/pretextos/article/view/18635/15031
Lakman Y, Chalmers H, Sexton C. Young carers’ educational experiences and support: A roadmap for the development of school policies to foster their academic success. Alberta J Educ Res [Internet]. 2017 [acesso 12 dezembro 2023];63(1):63-74. Disponível em: https://journalhosting.ucalgary.ca/index.php/ajer/article/view/56226 DOI: https://doi.org/10.11575/ajer.v63i1.56226
Hamilton M, Redmond G. Are young carers less engaged in school than non-carers? Evidence from a representative Australian study. Child Indicators Research [Internet]. 2019 [acesso 12 dezembro 2023];13(2020):33-49. Disponível em: https://link.springer.com/article/10.1007/s12187-019-09647-1 DOI: https://doi.org/10.1007/s12187-019-09647-1
Becker S, Sempik J. Young adult carers: The impact of caring on health and education. Children & society [Internet]. 2018 [acesso 14 dezembro 2023];33(4):377-86. Disponível em: https://onlinelibrary.wiley.com/doi/10.1111/chso.12310 DOI: https://doi.org/10.1111/chso.12310
Saragosa M, Frew M, Hahn-Goldberg S, Orchanian-Cheff A, Okrainec K. The young carers’ journey: A systematic review and meta ethnography. Int J Environ Res Pub Health [Internet]. 2022 [acesso 12 outubro 2023];19(10):5826. Disponível em: https://www.mdpi.com/1660-4601/19/10/5826 DOI: https://doi.org/10.3390/ijerph19105826
Meireles A, Marques S, Peixoto MM, Sousa M, Cruz S. Portuguese adolescents’ cognitive well‐being and basic psychological needs during the COVID‐19 outbreak: A longitudinal study. Applied psychology: health and well-being [Internet]. 2022 [acesso 14 dezembro 2023];4:881-898.Disponível em: https://iaap-journals.onlinelibrary.wiley.com/doi/10.1111/aphw.12356 DOI: https://doi.org/10.1111/aphw.12356
Madeira TS, Oliveira-Cardoso EA, Santos MA. Anticipatory grief of the family caregiver in hematopoietic stem cell transplantation. Est Inter Psicol [Internet]. 2020 [acesso 13 dezembro 2023];11(2):167-97. Disponível em: https://pepsic.bvsalud.org/scielo.php?pid=S2236-64072020000200011&script=sci_abstract&tlng=en DOI: https://doi.org/10.5433/2236-6407.2020v11n2p167
D’Amen B, Socci M, Di Rosa M, Casu G, Boccaletti L, Hanson E et al. Italian adolescent young caregivers of grandparents: Difficulties experienced and support needed in intergenerational caregiving-qualitative findings from a European Union Funded Project. Int J Environ Res Pub Health [Internet]. 2021 [acesso 22 maio 2024];19(1):103. Disponível em: https://www.mdpi.com/1660-4601/19/1/103 DOI: https://doi.org/10.3390/ijerph19010103
Rumor PCF, Heidemann ITSB, Souza JB de, Manfrini GC, Durand MK, Beckert RAT. Reflections of the social determinants of health on school children’s learning. Rev Esc Enferm USP [Internet]. 2022 [acesso 2 outubro 2024];56:e20220345. Disponível em: https://www.scielo.br/j/reeusp/a/VMGR6MXBxwm7gD3M7ncLZfN/?lang=en DOI: https://doi.org/10.1590/1980-220x-reeusp-2022-0345en
Meireles A, Marques S, Faria S, Lopes JC, Teixeira AR, Alves B, Becker S. Being a young carer in Portugal: The impact of caring on adolescents’ life satisfaction. Int J Environ Res Pub Health [Internet]. 2023 [acesso 10 dezembro 2023];20(21):7017. Disponível em: https://www.mdpi.com/1660-4601/20/21/7017 DOI: https://doi.org/10.3390/ijerph20217017
Raj M, Feldman SJ, Chang T. Policies and resources identified by youth as being important to prepare for caregiving responsibilities. J Am Board Fam Med [Internet]. 2022 [acesso 5 março 2024];35(4):814-20. Disponível em: https://www.jabfm.org/content/35/4/814 doi: https://doi.org/10.3122/jabfm.2022.04.210540
Casu G, Hlebec V, Boccaletti L, Bolko I, Manattini A, Hanson E. Promoting mental health and well-being among adolescent young carers in Europe: A randomized controlled trial protocol. Int J Environ Res Pub Health [Internet]. 2021 [acesso 22 maio 2024];18(4):2045. Disponível em: https://www.mdpi.com/1660-4601/18/4/2045 doi: https://doi.org/10.3390/ijerph18042045
Bezerra AM, El Akra KMA, Oliveira RMB, Marques FRB, Neves ET, Toso BRGO, et al. Children and adolescents with special health needs: Care in home care services. Esc Anna Nery Rev Enferm [Internet]. 2021 [acesso 2 outubro 2024];27:e20220160. Disponível em: https://www.scielo.br/j/ean/a/jHjLZw5SDhzyfhmLFDDLHrn/?lang=en doi: https://doi.org/10.1590/2177-9465-ean-2022-0160en
Brasil. Ministério da saúde. Portaria n.º 825, de 25 de abril de 2016. Redefine a Atenção Domiciliar no âmbito do Sistema Único de Saúde (SUS) e atualiza as equipes habilitadas [Internet]. Diário Oficial da União, Brasília, DF, 2016 [acesso 2 outubro 2024]. https://bvsms.saude.gov.br/bvs/saudelegis/gm/2016/prt0825_25_04_2016.html
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Derechos de autor 2025 Gabrieli Patricio Rissi, Roberta Tognollo Borotta Uema, Camila Moraes Garollo Piran, Beatriz Sousa Da Fonseca, Bianca Machado Cruz Shibukawa, Ieda Harumi Higarashi
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