Health literacy of informal caregivers of patients undergoing neurosurgery
Alfabetización en salud de cuidadores informales de pacientes sometidos a neurocirugía
Letramento em saúde de cuidadores informais de pacientes submetidos à neurocirurgia
Graziela Maria Ferraz de Almeida; Hiago Henrique de Oliveira; Pedro Tadao Hamamoto Filho; Marla Andréia Garcia de Avila
Abstract
Objective identify the level of Health Literacy (HL) of informal caregivers and their knowledge about the surgical treatment and postoperative period of patients undergoing neurosurgery.
Method QUAL+quan study conducted in 2023 in a public hospital in São Paulo. Participants included informal caregivers of neurosurgical patients aged 18 years or older. Data collection employed a sociodemographic questionnaire, the European Health Literacy Survey Questionnaire short-short form (HLS-EU-Q6) to measure HL, and the Ask Me Three® tool.
Results among the 71 caregivers, 71.8% were women, with a mean age of 47 ± 13 years, and 61.9% exhibited likely problematic HL. Three categories and eight subcategories emerged from the guiding questions. From the caregivers' experience, three categories and eight subcategories emerged. Caregivers identify and understand the patients' care needs in the postoperative period. However, they have doubts about the care to be provided at home and consider themselves important for the patient's recovery.
Final considerations and practice implications to practice assessing the caregivers' HL level can contribute to the transition from hospital care to home care. Furthermore, the Ask Me Three® tool can help nurses identify the need for guidance and implement educational actions that promote caregivers' HL.
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Resumo
Objetivo: identificar o nível do Letramento em Saúde (LS) de cuidadores informais e seu conhecimento sobre o tratamento cirúrgico e o período pós-operatório de pacientes submetidos à neurocirurgia.
Método: estudo QUAL+quan realizado em 2023, em um hospital público paulista. Participaram do estudo cuidadores informais de pacientes neurocirúrgicos com 18 anos ou mais. Utilizaram-se os questionários, sociodemográfico, o European Health Literacy Survey Questionnaire short-short form (HLS-EU-Q6) para medir LS e o Ask Me Three® para guiar as perguntas norteadoras.
Resultados: dos 71 cuidadores, 71,8% eram mulheres, com média de idade de 47 ± 13 anos, e 61,9% apresentaram LS provavelmente problemático. Da vivência dos cuidadores, emergiram três categorias e oito subcategorias. Os cuidadores identificaram as necessidades de cuidado dos pacientes no pós-operatório e as compreenderam. Contudo, apresentaram dúvidas sobre o cuidado a ser realizado no domicílio e se consideraram importantes para a recuperação do paciente.
Considerações finais e implicações para a prática: a avaliação do nível do LS dos cuidadores pode contribuir para a transição do cuidado hospitalar para o domicílio. Ademais, a ferramenta Ask Me Three® pode contribuir para que os enfermeiros identifiquem as necessidades de orientações e realizem as ações educativas que possam promover a LS dos cuidadores.
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Referências
1 World Health Organization. Health promotion glossary of terms 2021. Geneva: WHO; 2021. p. 6.
2 U.S. Department of Health and Human Services. Health literacy in healthy people 2030 [Internet]. Washington, D.C.: Office of Disease Prevention and Health Promotion; 2025 [citado 2025 mar 11]. Disponível em:
3 Chang ME, Baker SJ, Marques ICS, Liwo AN, Chung SK, Richman JS et al. Health literacy in surgery. Health Lit Res Pract. 2020;4(1):e46-65.
4 Oliveira Jr GS, McCarthy RJ, Wolf MS, Holl J. The impact of health literacy in the care of surgical patients: a qualitative systematic review. BMC Surg. 2015;15(1):86.
5 Cajita MI, Denhaerynck K, Dobbels F, Berben L, Russell CL, Davidson PM et al. Health literacy in heart transplantation: prevalence, correlates and associations with health behaviors: findings from the international BRIGHT study. J Heart Lung Transplant. 2017;36(3):272-9.
6 English NC, Jones BA, Chu DI. Addressing low health literacy in surgical populations. Clin Colon Rectal Surg. 2025;38(1):26-33.
7 Shlobin NA, Huang J, Lam S. Health literacy in neurosurgery: a scoping review. World Neurosurg. 2022;166:71-87.
8 Roy M, Corkum JP, Urbach DR, Novak CB, von Schroeder HP, McCabe SJ et al. Health literacy among surgical patients: a systematic review and meta-analysis. World J Surg. 2019;43(1):96-106.
9 Almeida GMF, Gimenez VCA, Rodrigues CI, Budri AMV, Hamamoto Fo PT, Garcia de Avila MA. Factors associated with the health literacy of caregivers of patients undergoing cranial neurological surgery. World Neurosurg. 2025;193:1081-8.
10 Siqueira EMP, Diccini S. Postoperative complications in elective and non-elective neurosurgery. Acta Paul Enferm. 2017;30(1):101-8.
11 Paz VP, Mantovani MD, Silva AT, Paes RG, Costa MC. Health knowledge and literacy in the late postoperative of myocardial revascularization. Nurs Tech Qual Res. 2023;6(2):45-58.
12 Hamamoto Fo PT, Gonçalves LB, Koetz NF, Silvestrin AML, Alves Jr AC, Rocha LA et al. Long-term follow-up of patients undergoing decompressive hemicraniectomy for malignant stroke: quality of life and caregiver’s burden in a real-world setting. Clin Neurol Neurosurg. 2020;197:106168.
13 Castro AR, Arnaert A, Moffatt K, Kildea J, Bitzas V, Tsimicalis A. “Informal caregiver” in nursing: an evolutionary concept analysis. ANS Adv Nurs Sci. 2023;46(1):E29-42.
14 Barreto CK, Mendes GS, Moreira EFC, Iranzo TBS, Santana SCA. Complicações pós-operatórias em neurocirurgia: estratégias de prevenção e gerenciamento. Braz J Implant Health Sci. 2024;6(2):1401-14.
15 Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int. 2000;15(3):259-67.
16 Driessnack M, Sousa VD, Mendes IAC. An overview of research designs relevant to nursing: part 3: mixed and multiple methods. Rev Lat Am Enfermagem. 2007;15(5):1046-9.
17 Bardin L. Análise de conteúdo. Lisboa: Edições 70; 1977.
18 Fontanella BJB, Ricas J, Turato ER. Amostragem por saturação em pesquisas qualitativas em saúde: contribuições teóricas. Cad Saude Publica. 2008;24(1):17-27.
19 Souza VRS, Marziale MHP, Silva GTR, Nascimento PL. Tradução e validação para a língua portuguesa e avaliação do guia COREQ. Acta Paul Enferm. 2021;34:eAPE02631.
20 Mialhe FL, Moraes KL, Bado FMR, Brasil VV, Sampaio HAC, Rebustini F. Psychometric properties of the adapted instrument European Health Literacy Survey Questionnaire short-short form. Rev Lat Am Enfermagem. 2021;29:e3436.
21 Lord J, Borkowski N, Weech-Maldonado R. Patient engagement in home health: the role of health literacy and “Ask Me Three®. Home Health Care Manage Pract. 2021;33(3):202-9.
22 Six-Means A, Bauer TK, Teeter R, Segraves D, Cutshaw L, High L. Building a foundation of health literacy with Ask Me 3TM. J Consum Health Internet. 2012;16(2):180-91.
23 Sommerfield A, Sommerfield D, Lee K, Evans D, Dodd M, Bell E et al. Information overload and parental perspectives on information provided to parents/carers of paediatric patients undergoing elective surgical procedures. PLoS One. 2024 out 22;19(10):e0309485.
24 Daneshmand S, Bagherzadeh R, Mohammadpour M, Heidari F, Vahedparast H. Relationship between caregiver health literacy and treatment adherence of patients with advanced chronic kidney disease undergoing hemodialysis: a cross-sectional dyadic study. J Health Literacy. 2023;8(3):43-54.
25 Kolunsağ S, Ardıç A. Health literacy of caregivers. Home Healthc Now. 2023 set-out;41(5):277-81.
26 Soares TAM, Brasil VV, Moraes KM, Santos LTZ, Vila VSC, Borges Jr LH. Letramento em saúde de cuidadores domiciliares de uma capital brasileira. Acta Paul Enferm. 2021;34:eAPE002255.
27 Wright JP, Edwards GC, Goggins K, Tiwari V, Maiga A, Moses K et al. Association of health literacy with postoperative outcomes in patients undergoing major abdominal surgery. JAMA Surg. 2018;153(2):137-42.
28 Scarpato KR, Kappa SF, Goggins KM, Chang SS, Smith Jr JA, Clark PE et al. The impact of health literacy on surgical outcomes following radical cystectomy. J Health Commun. 2016;21(Suppl 2):99-104.
29 Baker S, Malone E, Graham L, Dasinger E, Wahl T, Titan A et al. Patient-reported health literacy scores are associated with readmissions following surgery. Am J Surg. 2020;220(5):1138-44.
30 Theiss LM, Wood T, McLeod MC, Shao C, Santos Marques ID, Bajpai S et al. The association of health literacy and postoperative complications after colorectal surgery: a cohort study. Am J Surg. 2022;223(6):1047-52.
31 Wahl TS, Goss LE, Morris MS, Gullick AA, Richman JS, Kennedy GD et al. Enhanced recovery after surgery (ERAS) eliminates racial disparities in postoperative length of stay after colorectal surgery. Ann Surg. 2018;268(6):1026-35.
32 Gustafsson UO, Hausel J, Thorell A, Ljungqvist O, Soop M, Nygren J. Adherence to the enhanced recovery after surgery protocol and outcomes after colorectal cancer surgery. Arch Surg. 2011;146(5):571-7.
33 Oliveira M, Benincá CRS. Intervenção de psicoeducação com cuidadores familiares de pacientes submetidos à cirurgia cardíaca. Rev SBPH. 2020;23(2):33-41.
34 Prieto-Moreno R, Mora-Traverso M, Estévez-López F, Molina-Garcia P, Ortiz-Piña M, Salazar-Graván S et al. Effects of the ActiveHip+ mHealth intervention on the recovery of older adults with hip fracture and their family caregivers: a multicentre open-label randomised controlled trial. EClinicalMedicine. 2024 jun 7;73:102677.
35 Jaensson M, Josefin W, Dahlberg K. Health literacy friendly organizations: a scoping review about promoting health literacy in a surgical setting. Patient Educ Couns. 2024;125:108291.
36 Yuen EYN, Knight T, Ricciardelli LA, Burney S. Health literacy of caregivers of adult care recipients: a systematic scoping review. Health Soc Care Community. 2018;26(2):e191-206.
37 Pereira HJAR. Subitamente cuidadores informais: a experiência de transição para o papel de cuidador informal a partir de um evento inesperado [tese]. Lisboa: Universidade de Lisboa; 2011.
38 Pereira MJSB, Filgueiras MST. A dependência no processo de envelhecimento: uma revisão sobre cuidadores informais de idosos. Rev APS [Internet]. 2009; [citado 2025 jan 20];12(1):105-17. Disponível em:
39 Souza LR, Hanus JS, Dela Libera LB, Silva VM, Mangilli EM, Simões PW et al. Sobrecarga no cuidado, estresse e impacto na qualidade de vida de cuidadores domiciliares assistidos na atenção básica. Cad Saude Colet. 2015;23(2):140-9.
40 World Health Organization. State of the world's nursing 2020: investing in education, jobs and leadership [Internet]. Geneva: WHO; 2020 [citado 2025 maio 26]. Disponível em:
Aceito em:
10/06/2025
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