Jovens cuidadores no Brasil: desafios da responsabilidade prematura em domicílios

Gabrieli Patricio Rissi; Roberta Tognollo Borotta Uema; Camila Moraes Garollo Piran; Beatriz Sousa Da Fonseca; Bianca Machado Cruz Shibukawa; Ieda Harumi Higarashi

doi:10.5294/aqui.2024.24.4.4

Authors

Gabrieli Patricio Rissi Author State University of Maringá https://orcid.org/0000-0002-1702-4004
Roberta Tognollo Borotta Uema Author State University of Maringá https://orcid.org/0000-0002-8755-334X
Camila Moraes Garollo Piran Author State University of Maringá https://orcid.org/0000-0002-9111-9992
Beatriz Sousa Da Fonseca Author State University of Maringá https://orcid.org/0000-0002-3469-2231
Bianca Machado Cruz Shibukawa Author Federal University of Mato Grosso do Sul https://orcid.org/0000-0002-7739-7881
Ieda Harumi Higarashi Author State University of Maringá https://orcid.org/0000-0002-4205-6841

DOI:

https://doi.org/10.5294/aqui.2024.24.4.4

Keywords:

Caregivers, child, adolescent, caregiver burden, family relations

Abstract

Introduction: The care provided by young caregivers can be understood as a complex process due to its multidimensionality, such that its effects and meanings can transcend the mere attribution of caregiver. Objective: To understand how young caregivers perceive providing care to a family member who is dependent on care. Materials and Methods: this is an exploratory, qualitative study, guided by grounded theory and the theoretical framework of complex thinking. Data was collected from 15 young caregivers and seven family members between August 2022 and October 2023, in the homes of young individuals and family members who were providing care to a care-dependent family member who are Brazilian residents. Data analysis followed three stages, namely: open, axial, and selective coding. Results: The data analyzed enabled the formulation of three thematic categories, as follows: “When the need to provide care suddenly becomes a reality;” “Becoming a young caregiver: lived experiences;” “The daily life of a young caregiver: types of care, expectations, and perceptions.” It was found that becoming a young caregiver was not a planned event, but the result of an unexpected event or illness. It was noted that the care provided by young people interfered with their academic, social, and family life, generating physical and emotional burden. Conclusions: the way in which young caregivers attribute meaning to providing care to a care-dependent family member is wide-ranging and permeated with ambiguous feelings, since while they feel overwhelmed and ashamed of exercising this role and exposing it to other people, they report becoming more mature and increasing their technical, emotional, and social skills.

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Author Biography

Gabrieli Patricio Rissi, State University of Maringá

Graduada em Enfermagem pela Universidade Estadual de Maringá (UEM). Aluna de Mestrado pelo Programa de Pós-Graduação em Enfermagem pela UEM. Área de Pesquisa atual - Gestão em Saúde/ Segurança do Paciente. Membro da Rede Brasileira de Enfermagem e Segurança do Paciente (REBRAENSP), núcleo Maringá-PR. Participa do Grupo de Estudos em Saúde da Criança, Adolescente e Família (GESCAF).

References

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