Necessidades de autogestão após AVC: perspetivas de pessoas com AVC e cuidadores informais

Daniel de Carvalho; Mara Matos; José Calheiros; Carla Pereira

doi:10.31211/rpics.2025.11.2.365

Autores

Daniel Conde de Carvalho Unidade Local de Saúde do Litoral Alentejano https://orcid.org/0009-0001-7518-2924
Mara Matos Instituto Politecnico de Setubal https://orcid.org/0000-0002-0405-2401
José Manuel Calheiros Instituto Politécnico de Setúbal https://orcid.org/0000-0002-2724-0675
Carla Mendes Pereira Instituto Politecnico de Setubal https://orcid.org/0000-0002-2899-9640

DOI:

https://doi.org/10.31211/rpics.2025.11.2.365

Palavras-chave:

Acidente Vascular Cerebral, Autogestão, Cuidadores Informais, Literacia em Saúde, Estudo Qualitativo

Resumo

Contexto: Em Portugal, o Acidente Vascular Cerebral (AVC) constitui a principal causa de morte e incapacidade, estimando-se um aumento de 20% no número de pessoas a viver com sequelas até 2035. Estudos indicam que tanto as pessoas com AVC como os/as cuidadores/as informais relatam sentir-se abandonados após alta hospitalar, com risco agravado de readmissão. Objetivo: Compreender as necessidades de autogestão das pessoas com AVC e dos/as cuidadores/as informais e explorar a perspetiva dos profissionais de saúde sobre estratégias facilitadoras ao longo do processo de reabilitação. Métodos: Adotou-se um delineamento qualitativo e multiperspetivo, com entrevistas semiestruturadas individuais a 23 participantes (7 pessoas com AVC, 7 cuidadores/as e 9 profissionais), após aprovação ética pela Unidade Local de Saúde do Litoral Alentejano. Os dados foram submetidos a análise temática reflexiva, com suporte do software NVivo 11. Resultados: Emergiram dois temas: "O novo eu" e "Como assumir o controlo", que traduzem a necessidade de adaptação das pessoas com AVC e dos cuidadores às mudanças decorrentes do AVC. A literacia em saúde e o empoderamento foram considerados cruciais para uma autogestão eficaz, contribuindo para melhorar a qualidade de vida e reduzir a dependência dos/as profissionais de saúde. Conclusões: A autogestão após o AVC requer abordagens personalizadas e integradas que envolvam ativamente as pessoas com AVC e cuidadores. Os resultados sustentam o desenvolvimento de programas híbridos de autogestão, com aplicabilidade clínica, relevância para a formulação de políticas públicas e potencial de adaptação a outras condições crónicas, no sentido de promover maior autonomia e continuidade de cuidados na comunidade.

Downloads

Não há dados estatísticos.

Referências

Almeida, P. M. D. de, Pereira, C. S., Santos, H. F. C. M. dos, Martins, A. C., Vital, E., Noronha, T., Caldas, A. C. (2016). Categorização CIF de instrumentos de medida e intervenções utilizados na Fisioterapia em sujeitos com AVC. Cadernos De Saúde, 8, 16–37. https://doi.org/10.34632/CADERNOSDESAUDE.2016.2856

Araújo, M., & Moura, O. (2011). Estrutura factorial da General Self-Efficacy Scale (Escala de Auto-Eficácia Geral) numa amostra de professores portugueses. Laboratório de Psicologia, 9(1), 95–105.

Audulv, Å., Hutchinson, S., Warner, G., Kephart, G., Versnel, J., & Packer, T. L. (2021). Managing everyday life: Self-management strategies people use to live well with neurological conditions. Patient Education and Counseling, 104(2), 413–421. https://doi.org/10.1016/J.PEC.2020.07.025

Berger, R. (2015). Now I see it, now I don’t: researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. https://doi.org/10.1177/1468794112468475

Brandão, D. (2012). Literacia em Saúde: A internet como recurso [Dissertação de Mestrado Escola Superior de Enfermagem de Coimbra]. Repositório Científico Escola Superior de Enfermagem de Coimbra.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

Braun, V., & Clarke, V. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238

Carlstedt, E., Lexell, E. M., Pessah-Rasmussen, H., & Iwarsson, S. (2015). Psychometric properties of the Swedish version of the General Self-Efficacy Scale in stroke survivors. International Journal of Rehabilitation Research, 38(4), 333–337. https://doi.org/10.1097/MRR.0000000000000131

Chen, L., Xiao, L. D., Chamberlain, D., & Newman, P. (2021). Enablers and barriers in hospital-to-home transitional care for stroke survivors and caregivers: A systematic review. Journal of Clinical Nursing, September 2020, 1–22. https://doi.org/10.1111/JOCN.15807

Clark, E., Bennett, K., Ward, N., & Jones, F. (2018). One size does not fit all–Stroke survivor’s views on group self-management interventions. Disability and Rehabilitation, 40(5), 569–576. https://doi.org/10.1080/09638288.2016.1268653

Crotty, M. (1998). The Foundations of Social Research: Meaning and perspective in the research process (1st ed.). SAGE Publications Ltd. https://doi.org/10.2307/2066441

Demir, Y. P., Balci, N. Ç., Ünlüer, N. Ö., Uluǧ, N., Dogru, E., Kilinç, M., Yildirim, S. A., & Yilmaz, Ö. (2015). Three different points of view in stroke rehabilitation: Patient, caregiver, and physiotherapist. Topics in Stroke Rehabilitation, 22(5), 377–385. https://doi.org/10.1179/1074935714Z.0000000042

Denzin, N., & Lincoln, Y. (2018). The SAGE Handbook of Qualitative Research. In N. Denzin & Y. Lincoln (Eds.), Synthese (5th ed., Vol. 195, Issue 5). SAGE Publications Inc

Direção-Geral da Saúde. (2019). Manual de Boas Práticas Literacia em Saúde: Capacitação dos Profissionais de Saúde [Manual of Good Practices Health Literacy: Training of Health Professionals]. https://doi.org/10.13140/RG.2.2.17763.30243

Direção-Geral da Saúde. (2021). Plano Nacional de Saúde 2021-2030. Saúde Sustentável: De tod@s para tod@s.

Direção-Geral da Saúde. (2023). Plano Nacional de Literacia em Saúde e Ciências do Comportamento 2023-2030 — Plano Estratégico.

Duncan, P. W., Bode, R. K., Lai, S. M., & Perera, S. (2003). Rasch analysis of a new stroke-specific outcome scale: The stroke impact scale. Archives of Physical Medicine and Rehabilitation, 84(7), 950–963. https://doi.org/10.1016/S0003-9993(03)00035-2

Feigin, V. L., Stark, B. A., Johnson, C. O., Roth, G. A., Bisignano, C., Abady, G. G., Abbasifard, M., Abbasi-Kangevari, M., Abd-Allah, F., Abedi, V., Abualhasan, A., Abu-Rmeileh, N. M. E., Abushouk, A. I., Adebayo, O. M., Agarwal, G., Agasthi, P., Ahinkorah, B. O., Ahmad, S., Ahmadi, S., … Murray, C. J. L. (2021). Global, regional, and national burden of stroke and its risk factors, 1990-2019: A systematic analysis for the Global Burden of Disease Study 2019. The Lancet Neurology, 20(10), 795–820. https://doi.org/10.1016/S1474-4422(21)00252-0

Fryer, C. E., Luker, J. A., McDonnell, M. N., & L, H. S. (2016). Self management programmes for quality of life in people with stroke (Review). Cochrane Database of Systematic Reviews, 8, 1–2. https://doi.org/10.1002/14651858.CD010442.PUB2

Gangwani, R., Cain, A., Collins, A., & Cassidy, J. M. (2022). Leveraging Factors of Self-Efficacy and Motivation to Optimize Stroke Recovery. Frontiers in Neurology, 13. https://doi.org/10.3389/FNEUR.2022.823202

HLS-EU Consortium. (2012). Comparative report of health literacy in eight EU member states: The European Health Literacy Survey HLS-EU. EU Publications Office. https://shorturl.at/gVd2w

James, D. C. S., & Harville, C. (2016). eHealth Literacy, Online Help-Seeking Behavior, and Willingness to Participate in mHealth Chronic Disease Research Among African Americans, Florida, 2014–2015. Preventing Chronic Disease, 13, 1–9. https://doi.org/10.5888/PCD13.160210

Jones, F., McKevitt, C., Riazi, A., & Liston, M. (2017). How is rehabilitation with and without an integrated self-management approach perceived by UK community-dwelling stroke survivors? A qualitative process evaluation to explore implementation and contextual variations. BMJ Open, 7(4), 1–11. https://doi.org/10.1136/BMJOPEN-2016-014109

Kendall, M., Murray, S. A., Carduff, E., Worth, A., Harris, F., Lloyd, A., Cavers, D., Grant, L., Boyd, K., & Sheikh, A. (2010). Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs. BMJ (Online), 340(7739), Artigo 196. https://doi.org/10.1136/BMJ.B4122

Kılınç, S., Erdem, H., Healey, R., & Cole, J. (2020). Finding meaning and purpose: a framework for the self-management of neurological conditions. Disability and Rehabilitation, 44(2), 219–230. https://doi.org/10.1080/09638288.2020.1764115

Krishnan, S., Hay, C. C., Pappadis, M. R., Deutsch, A., & Reistetter, T. A. (2019). Stroke survivors’ perspectives on post-acute rehabilitation options, goals, satisfaction, and transition to home. Journal of Neurologic Physical Therapy, 43(3), 160–167. https://doi.org/10.1097/NPT.0000000000000281

Lindblom, S., Ytterberg, C., Elf, M., & Flink, M. (2020). Perceptive dialogue for linking stakeholders and units during care transitions – A qualitative study of people with stroke, significant others and healthcare professionals in Sweden. International Journal of Integrated Care, 20(1), 1–11. https://doi.org/10.5334/IJIC.4689

Maciel Barbosa, P., Firmino-Machado, J., Ferreira, L. N., Tedim Cruz, V., & Szrek, H. (2023). From healthcare system to individuals through stroke rehabilitation pathways.Outcomes, information, and satisfaction along 12 months prospective cohort in Portugal. Topics in Stroke Rehabilitation, 30(7), 727–737. https://doi.org/10.1080/10749357.2023.2165266

Martins, T., Peixoto, M. J., Araújo, F., Rodrigues, M., & Pires, F. (2015). Development of the short version of the informal caregiver burden assessment questionnaire. Revista Da Escola de Enfermagem, 49(2), 236–244. https://doi.org/10.1590/S0080-623420150000200008

McKenna, S., Jones, F., Glenfield, P., & Lennon, S. (2015). Bridges self-management program for people with stroke in the community: A feasibility randomized controlled trial. International Journal of Stroke, 10(5), 697–704. https://doi.org/10.1111/IJS.12195

Mountain, A., Patrice Lindsay, M., Teasell, R., Salbach, N. M., de Jong, A., Foley, N., Bhogal, S., Bains, N., Bowes, R., Cheung, D., Corriveau, H., Joseph, L., Lesko, D., Millar, A., Parappilly, B., Pikula, A., Scarfone, D., Rochette, A., Taylor, T., … Cameron, J. I. (2020). Canadian stroke best practice recommendations: Rehabilitation, recovery, and community participation following stroke. Part Two: Transitions and community participation following stroke. International Journal of Stroke, 15(7), 789–806. https://doi.org/10.1177/1747493019897847

NICE. (2023). National Clinical Guidelines for Strokefor the United Kingdom and Ireland. King’s College London.

Norman, C. D., & Skinner, H. A. (2006). eHEALS: The eHealth Literacy Scale. Journal of Medical Internet Research, 8(4), e27. https://doi.org/10.2196/JMIR.8.4.E27

Norrving, B., Barrick, J., Davalos, A., Dichgans, M., Cordonnier, C., Guekht, A., Kutluk, K., Mikulik, R., Wardlaw, J., Richard, E., Nabavi, D., Molina, C., Bath, P. M., Stibrant Sunnerhagen, K., Rudd, A., Drummond, A., Planas, A., & Caso, V. (2018). Action plan for stroke in europe 2018–2030. European Stroke Journal, 3(4), 309–336. https://doi.org/10.1177/2396987318808719

Nott, M., Wiseman, L., Seymour, T., Pike, S., Cuming, T., & Wall, G. (2021). Stroke self-management and the role of self-efficacy. Disability and Rehabilitation, 43(10), 1410–1419. https://doi.org/10.1080/09638288.2019.1666431

Pedro, A. R., Amaral, O., & Escoval, A. (2016). Literacia em saúde, dos dados à ação: Tradução, validação e aplicação do European Health Literacy Survey em Portugal. Revista Portuguesa de Saude Publica, 34(3), 259–275. https://doi.org/10.1016/J.RPSP.2016.07.002

Pereira, C. M., Greenwood, N., & Jones, F. (2021). From recovery to regaining control of life – the perspectives of people with stroke, their carers and health professionals. Disability and Rehabilitation, 43(20), 2897–2908. https://doi.org/10.1080/09638288.2020.1722263

Pereira, C. M., Greenwood, N., & Jones, F. (2023). "A proof of life" through transition from hospital to home after a stroke in a Portuguese setting - a multi-perspective, longitudinal qualitative study. International Journal of Qualitative Studies on Health and Well-Being, 18(1), Artigo 2238986. https://doi.org/10.1080/17482631.2023.2238986

Pereira, C. M., Matos, M., Carvalho, D., Macedo, P., Calheiros, J. M., Alves, J., Paulino Ferreira, L., Dias, T. L., Neves Madeira, R., & Jones, F. (2024). Building bridges between people with stroke, families, and health professionals: Development of a blended care program for self-management. Journal of Clinical Medicine, 13(1). https://doi.org/10.3390/JCM13010300

Pindus, D. M., Mullis, R., Lim, L., Wellwood, I., Rundell, A. V., Aziz, N. A. A., & Mant, J. (2018). Stroke survivors’ and informal caregivers’ experiences of primary care and community healthcare services – A systematic review and meta-ethnography. PLoS ONE, 13(2), 1–23. https://doi.org/10.1371/JOURNAL.PONE.0192533

Roberts, K., Dowell, A., & Nie, J. B. (2019). Attempting rigour and replicability in thematic analysis of qualitative research data; A case study of codebook development. BMC Medical Research Methodology, 19(1), 1–8. https://doi.org/10.1186/S12874-019-0707-Y

SAFE. (2020). The burden of Stroke in Portugal. In The Burden of Stroke in Europe Report.

Schwarzer, R., & Jerusalem, M. (1995). Generalized self-efficacy scale. In J. Weinman, S. Wright, & M. Johnston (Eds.), Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35–37). NFER-NELSON.

Sørensen, K., Pelikan, J. M., Röthlin, F., Ganahl, K., Slonska, Z., Doyle, G., Fullam, J., Kondilis, B., Agrafiotis, D., Uiters, E., Falcon, M., Mensing, M., Tchamov, K., Van Den Broucke, S., & Helmut Brand. (2015). Health literacy in Europe: Comparative results of the European health literacy survey (HLS-EU). European Journal of Public Health, 25(6), 1053–1058. https://doi.org/10.1093/EURPUB/CKV043

Teixeira, M. J. C., Abreu, W., Costa, N., & Maddocks, M. (2020). Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal. BMC Palliative Care, 19(1), 1–11. https://doi.org/10.1186/S12904-020-00583-4

Teodoro, M., & Pereira, C. M. (2009). Contributo para a adaptação e validação da versão portuguesa do questionário de impacto do AVC- versão 3.0 e versão proxy. Escola Superior de Saúde do Instituto Politécnico de Setúbal.

Tomás, C., Queirós, P., & Ferreira, T. (2014). Análise das propriedades psicométricas da versão portuguesa de um instrumento de avaliação de e-literacia em saúde. Revista de Enfermagem Referência, 4(2), 19–28. https://doi.org/10.12707/RIV14004

White, C. L., Brady, T. L., Saucedo, L. L., Motz, D., Sharp, J., & Birnbaum, L. A. (2014). Towards a better understanding of readmissions after stroke: Partnering with stroke survivors and caregivers. Journal of Clinical Nursing, 1–10. https://doi.org/10.1111/JOCN.12739

World Health Organization. (2021). Health Promotion Glossary of Terms 2021. In World Health Organization. https://bit.ly/4rhpFoz

Wilkins, E., Wilson, L., Wickramasinghe, K., Bhatnagar, P., Leal, J., Luengo-Fernandez, R., Burns, R., Rayner, M., & Townsend, N. (2017). European Cardiovascular Disease Statistics 2017. In European Heart Network, Brussels. https://bit.ly/3XNlnb7

Wong. M. N., Cheung, M. K., Ng Y. M., Yuan, H. L., Lam, B. Y., Fu, S. N., Chan, C. C. H. (2023). International classification of functioning, disability, and health-based rehabilitation program promotes activity and participation of post-stroke patients. Frontiers Neurology, 3(14), Artigo 1235500. https://doi.org/10.3389/FNEUR.2023.1235500