Caring when the caregiver becomes ill: a qualitative analysis of the impacts and multidimensional challenges in informal caregiving
DOI:
https://doi.org/10.15649/cuidarte.5416Keywords:
Informal Caregivers, Caregiver Burden, Social Support, Public PoliciesAbstract
Highlights
- The impact of informal caregiving on caregivers is multidimensional, with repercussions on the personal, family, social, work, and financial levels.
- When informal caregivers become ill, they face added difficulties to the already demanding task of caregiving and find support only in the informal network.
- Given the scarcity of studies focusing on caregivers who become ill, this article gives voice to the difficulties faced firsthand and problematizes the situation of collective responsibility.
- The growing importance of informal care necessitates integrated and community-based socio-health policies and interventions, ensuring effective support for those who care for others.
Introduction: Informal care has enormous societal relevance in southern European countries. The illness of carers casts a shadow of doubt over the caregiving process. Objective: To analyze the multidimensional impacts and challenges when informal carers face a situation of illness or incapacity. Materials and Methods: A qualitative methodology was used, collecting data through semistructured interviews and using categorical content analysis. The participating caregivers were recruited from the community through organizations. Results: 10 informal carers participated, 9 women aged between 47 and 80 years old, who were family members and lived with the cared-for person. Two categories of analysis emerged: the impact on the informal carer and caring in a situation of illness or incapacity. The results showed impacts in the family, personal, social, work and financial life spheres, with restrictions on autonomy and freedom being highlighted. The carer's illness had implications for the provision of care, and there was a need to activate the informal support network, which was mainly family. There were also difficulties in accessing formal support. Discussion: Noteworthy the particularities of informal carers' experiences of illness, with increased difficulties compared to what other studies have shown in relation to informal care. Conclusion: The study contributes to highlighting the difficulties and needs of responding to and supporting carers who have fallen ill, posing challenges for social and health intervention in the community and for public policies.
How to cite this article: Durão, Inês Costa; Guadalupe, Sónia. Caring when the caregiver becomes ill: A qualitative analysis of the multidimensional impacts and challenges in informal caregiving. Revista Cuidarte. 2026;17(3):e5416. https://doi.org/10.15649/cuidarte.5416
References
Eurocarers. The gender dimension of informal care. [Internet] 2021 [cited 2025 july 1]. Available from: https://eurocarers.org/publications/the-gender-dimension-of-informal-care/
Entidade Reguladora da Saúde-ERS. Acesso, qualidade e concorrência nos cuidados continuados e paliativos. Entidade Reguladora da Saúde, Portugal. 2015. Consulta: julho 16, 2025. Disponível em: https://www.ers.pt/media/o0mdazvz/file-55.pdf
Fundação Francisco Manuel Dos Santos- PORDATA. 2025. Consulta: Maio 20, 2025. Disponível em:https://www.pordata.pt/
Guadalupe S, Cardoso J. As redes de suporte social informal como fontes de provisão social em Portugal: o caso da população idosa. Sociedade e Estado. 2018; 33(1):213–48. https://doi.org/10.1590/s0102-699220183301009
Moreira MJG. Como envelhecem os portugueses: Envelhecimento, saúde, idadismo. Fundação Francisco Manuel dos Santos. 2020. http://hdl.handle.net/10400.11/7409
Serra I, Gemito ML. Cuidadores informais: Quem quer ou quem pode? In: Mendes, F; Gemito, L; Cruz, D. & Lopes, M. (coord.) Enfermagem Contemporânea: Dez Temas, Dez Debates. Nº 1. Colecção E-books. Oficinas Temáticas. pp. 132-149. ISBN: 978-989-20-4162-9. http://hdl.handle.net/10174/10411
Pimentel L. Filho és, Pai serás... Cuidar de Pessoas Idosas em Contexto Familiar. Coisas de Ler Edições. 2013.
Guadalupe S, Vicente HT. Família e outras redes de suporte social na população idosa. In: Santos CC, Teixeira M, editors. Intervenções e mediações com idosos. Imprensa da Universidade de Coimbra. 2021, p. 63-97.
Araújo M, Soeiro J. Trabalho, reconhecimento e justiça social: O caso dos cuidados informais em Portugal. e-cadernos CES. 2021;15(35). https://doi.org/10.4000/eces.6164
Movimento Cuidar dos Cuidadores Informais. Estudo sobre a perceção dos portugueses sobre cuidadores informais. [Infographic] 2021 [Cited 2025 Maio 20]. Disponível em: https://movimentocuidadoresinformais.pt/wp-content/uploads/2021/04/cuidadores-informais_infografia_A4.pdf
Carvalho MI. Estudo sobre o Perfil do Cuidador Familiar/Informal da Pessoa Sénior em Portugal. ISCSP-ULisboa, CAPP/ ISCSP-ULisboa, Fundação Aga Khan, Johnson & Johnson Foundation. 2022. Consulta: Maio 20, 2025. Disponível em: http://hdl.handle.net/10400.5/29181
Barbosa F, Voss G, Matos AD. Health impact of providing informal care in Portugal. BMC Geriatrics. 2020;20. https://doi.org/10.1186/s12877-020-01841-z
Movimento Cuidar dos Cuidadores Informais. O que é ser Cuidador Informal em Portugal? [Infographic] 2021 [Cited 2025 julho 16]. Disponível em: https://movimentocuidadoresinformais.pt/wp-content/uploads/2021/04/cuidadores-informais_infografia_2021_A4.pdf
Organisation for Economic Co-operation and Development. Health at a glance 2017: OECD indicators. OECD Publishing. [Internet] 2017 [cited 2025 May 18]. Available from: https://doi.org/10.1787/health_glance-2017-en
Costa MIA. Quem cuida de quem cuida? Estudo sobre o regime jurídico dos cuidadores informais e pessoas dependentes em Portugal [Thesis Mestrado em Direitos Humanos] Portugal, Universidade do Minho; 2022. Disponível em: https://hdl.handle.net/1822/84738
Sequeira C. Cuidar de idosos com dependência física e mental. Lidel; 2010.
Guimarães AC, Freitas L, Costa SO, Brandão V. Cuidar de Quem Cuida: Ferramentas de Avaliação dos Cuidadores: Caring for Carers: Caregiver Assessment Tolls. Gazeta Médica. 2020;7(1).
Portugal S. Dádiva, família e redes sociais. In: Portugal S, Martins PH, editors. Cidadania, políticas públicas e redes sociais. Imprensa da Universidade de Coimbra. 2011, p. 39– 54. https://estudogeral.uc.pt/bitstream/10316/41478/1/%EF%BB%BFCidadania%2C%20pol%C3%ADticas%20p%C3%BAblicas%20e%20redes%20sociais.pdf
Figueiredo D. Cuidados familiares ao idoso dependente. Climepsi Editores. 2007.
Hoffmann F, Rodrigues R. Informal carers: Who takes care of them? Policy Brief 4/2010. European Centre. [Internet] 2010 [cited 2025 may 18]. Available from: https://www.euro.centre.org/downloads/detail/1256
Glaser BG, Strauss AL. The discovery of grounded theory: strategies for qualitative research. Chicago: Aldine Publishing Company; 1967.
Durão I, Guadalupe S. “CareD”. Mendeley Data V1. 2025. https://doi.org/10.17632/b93jp9pn22.1
Guerreiro CM, Gemito ML, Caldeira EV, Coelho AP, Moita ER. Sobrecarga e qualidade de vida dos cuidadores informais de idosos dependentes. Revista Ibero-Americana de Saúde e Envelhecimento, 2022;8(2):225–39. https://doi.org/10.24902/r.riase.2022.8(2).560.225-239
Sequeira C. Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers. Journal of Clinical Nursing. 2013;22(3-4):491–500. https://doi.org/10.1111/jocn.12108
Inouye K, Pedrazzani ES, Pavarini SCI. Implicações da doença de Alzheimer na qualidade de vida do cuidador: um estudo comparativo. Cadernos de Saúde Pública. 2010;26(5):891–9. https://doi.org/10.1590/S0102-311X2010000500011
White-Means SI, Chang CF. Informal caregivers’ leisure time and stress. Journal of Family and Economic Issues. 1994;15:117–36. https://doi.org/10.1007/BF02353636
Guadalupe S, Costa É, Daniel F. Sentimentos face ao futuro, necessidades percebidas e redes de suporte social de cuidadores informais de pessoas adultas com deficiência. Revista Portuguesa de Investigação Comportamental e Social. 2016; 2(1):53–66. https://doi.org/10.7342/ismt.rpics.2016.2.1.27
Soeiro J, Araújo M, Figueiredo S. Cuidar de quem cuida. Penguin Random House. 2020.
Roth DL, Fredman L, Haley WE. Informal Caregiving and Its Impact on Health: A Reappraisal from Population-Based Studies. The Gerontologist. 2015; 55(2):309–19. https://doi.org/10.1093/geront/gnu177
Grunfeld E, Glossop R, McDowell I, Danbrook C. Caring for elderly people at home: the consequences to caregivers. CMAJ: Canadian Medical Association journal = journal de l’Association medicale canadienne. 1997;157(8):1101–5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1228268/
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