Repercussions of language difficulties in people with amyotrophic lateral sclerosis and the impact on their lives and on their caregivers
Repercussões das dificuldades de linguagem em pessoas com esclerose lateral amiotrófica e o impacto em suas vidas e na de seus cuidadores
Lavoisier Leite Neto; Thais Novais; Marcondes França Júnior; Regina Chun
Abstract
Purpose: to analyze the repercussions of language difficulties in people presented with Amyotrophic Lateral Sclerosis and in their caregivers, and the impact on their lives.
Methods: a cross-sectional study and qualitative approach, structured according to the COREQ. Semi-structured interview was conducted with 30 participants, family members and/or caregivers of people with the disease, most of them diagnosed for less than 5 years, and then transcribed and analyzed under repetition and relevance criteria.
Results: most participants were women, spouses, between 50 and 70 years of age, in average being a caregiver for less than 3 years. Most interviewees reported the absence of communication difficulties with the disease, little use of Augmentative and Alternative Communication, restricted social interaction, and the perception of signs of discouragement and sadness in the person under their care. Regarding themselves, they mentioned anguish related to the prognosis, emotional overload, and intense change of routine in their lives.
Conclusion: language difficulties were not frequently reported, despite the observation of restricted and social interactions. These findings showed the negative impacts on the quality of life of individuals and that of their family members and caregivers, which are experienced as anguish.
Keywords
Resumo
Objetivo: analisar as repercussões das dificuldades de linguagem para pessoas com Esclerose Lateral Amiotrófica e seus cuidadores e o impacto em suas vidas.
Métodos: estudo de corte transversal e abordagem qualitativa, estruturado de acordo com o COREQ. Realizou-se entrevista semiestruturada com 30 participantes, familiares e/ou cuidadores de pessoas com a doença, a maioria com tempo de diagnóstico menor que 5 anos, transcrita e analisada sob critérios de repetição e relevância.
Resultados: a maioria dos participantes era do sexo feminino, cônjuges, entre 50 e 70 anos, com tempo médio de cuidado menor de 3 anos. Grande parte dos entrevistados relatou ausência de dificuldade em se comunicar com as pessoas com a doença, usar pouco a Comunicação Suplementar e/ou Alternativa, participação social restrita e perceber sinais de desânimo e tristeza na pessoa sob seus cuidados. Em relação a si próprios, referiram angústia em relação ao prognóstico, sobrecarga emocional e mudança intensa de rotina em suas vidas.
Conclusão: dificuldades de linguagem não foram frequentemente relatadas, apesar de ter sido percebida restrição na participação social. Os achados mostraram os impactos negativos na qualidade de vida da pessoa e de seu familiar e/ou cuidador, que são vividos com angústia.
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References
1. Hardiman O, Al-Chalabi A, Chio A, Corr EM, Logroscino G, Robberecht W et al. Amyotrophic lateral sclerosis. Nat Rev Dis Primers. 2017;3:17071. DOI: 10.1038/nrdp.2017.71.
2. Körner S, Siniawski M, Kollewe K, Rath KJ, Krampfl K, Zapf A et al. Speech therapy and communication device: impact on quality of life and mood in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14(1):20-5. DOI: 10.3109/17482968.2012.692382.
3. Felgoise SH, Zaccheo V, Duff J, Simmons Z. Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17(3-4):179-83. DOI: 10.3109/21678421.2015.1125499.
4. Leite Neto L, Constantini AC. Dysarthria and quality of life in patients with amyotrophic lateral sclerosis. Rev. CEFAC. 2017;19(5):664-73. DOI: http://dx.doi.org/10.1590/1982-021620171954017.
5. Leite Neto L, Constantini AC, Chun RYS. Communication vulnerable in patients with amyotrophic lateral sclerosis: a systematic review. NeuroRehabilitation. 2017;40(4):561-8. DOI: 10.3233/NRE-171443.
6. Ray J. Real-life challenges in using augmentative and alternative communication by persons with amyotrophic lateral sclerosis. Commun. Disord. Q. 2015;36(3):187-92. DOI: https://doi.org/10.1177/1525740114545359.
7. Romano N, Chun RYS. A Augmentative and Alternative Communication use: family and professionals' perceptions of facilitators and barriers. CoDAS. 2018;30(4);e20170138. DOI: http://dx.doi.org/10.1590/2317-1782/20162017138.
8. Baylor C, Burns M, Eadie T, Britton D, Yorkston K. A qualitative study of interference with communicative participation across communication disorders in adults. Am J Speech Lang Pathol. 2011;20(4):269-87. DOI: 10.1044/1058-0360(2011/10-0084).
9. Chun RYS, Leite Neto L, Zaqueu VF, Maia ALW, Farias LP. Comunicação vulnerável em casos de alta complexidade: perspectiva de atuação e pesquisa fonoaudiológica em hospital-escola. In: da Silva RM, Bezerra IC, Brasil CCP, Moura ERF, organizadores. Estudos qualitativos: enfoques teóricos e técnicas de coleta de informações. Sobral: Edições UVA; 2018. p. 81-96.
10. Paskulin LM, Bierhals CCBK, dos Santos NO, Day CB, Machado DO, de Morais EP et al. Depressive symptoms of the elderly people and caregiver's burden in home care. Invest Educ Enferm. 2017;35(2):210-20. DOI: 10.17533/udea.iee.v35n2a10.
11. Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliat Med. 2013;27(5):437-46. DOI: https://doi.org/10.1177/0269216312455729.
12. Watermeyer TJ, Brown RG, Sidle KC, Oliver DJ, Allen C, Karlsson J et al. Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16(5-6):316-23. DOI: 10.3109/21678421.2015.1051990.
13. Bierhals CC, dos Santos NO, Fengler FL, Raubustt KD, Forbes DA, Paskulin LM. Needs of family caregivers in home care for older adults. Rev Lat Am Enfermagem. 2017;25:e2870. DOI: http://dx.doi.org/10.1590/1518-8345.1511.2870.
14. Sullivan AB, Miller D. Who is taking care of the caregiver? J Patient Exp. 2015;2(1):7-12. DOI: 10.1177/237437431500200103.
15. Creemers H, de Moree S, Veldink JH, Nollet F, van den Berg LH, Beelen A. Factors related to caregiver strain in ALS: a longitudinal study. J Neurol Neurosurg Psychiatry. 2016;87(7):775-81. DOI: 10.1136/jnnp-2015-311651.
16. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Int J Health Care. 2007;19(6):349. DOI: https://doi.org/10.1093/intqhc/mzm042.
17. Laville C, Dionne J. A construção do saber: manual de metodologia da pesquisa em ciências humanas. 1ª ed. Belo Horizonte, BH: Editora UFMG; 1999.
18. Turato ER. Tratado da metodologia da pesquisa clínico-qualitativa: construção teórico-epistemológica. 6ª ed. Petrópolis, RJ: Vozes; 2003.
19. Pinho AC, Goncalves E. Are amyotrophic lateral sclerosis caregivers at higher risk for health problems? Acta Med Port. 2016;29(1):56-62. DOI: 10.20344/amp.6590.
20. Güell MR, Anton A, Rojas-Garcia R, Puy C, Pradas J. Comprehensive care of amyotrophic lateral sclerosis patients: a care model. Arch Bronconeumol. 2013;49(12):529-33. DOI: 10.1016/j.arbres.2013.01.013.
21. van der Hulst EJ, Bak TH, Abrahams S. Impaired affective and cognitive theory of mind and behavioural change in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2015;86(11):1208-15. DOI: 10.1136/jnnp-2014-309290.
Submitted date:
12/25/2020
Accepted date:
05/20/2021
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