Calidad de Vida en Adultos con Parálisis Cerebral: comparación entre las percepciones autoinformadas y las de los cuidadores
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https://doi.org/10.5902/1984686X93924Palabras clave:
Calidad de Vida, Parálisis Cerebral, AutoinformeResumen
La transformación actual en la relación entre la persona y su entorno está mediada por la adecuación de apoyos, con el objetivo de alcanzar la calidad de vida (CdV) como resultado en los planes centrados en la persona. Llegar a la edad adulta con parálisis cerebral (PC) conlleva nuevos desafíos personales y sociales, pero la inversión en la evaluación de la CdV es escasa, lo que justifica la pertinencia de nuestro objetivo: comparar y correlacionar la CdV de adultos con PC institucionalizados según la percepción autoinformada y la de sus respectivos cuidadores formales. La Escala de CdV de Adultos con PC (ECdVAPC) fue aplicada a 54 participantes: 27 adultos con PC, entre 20 y 71 años (49,6 ± 14,9), 9 mujeres y 18 hombres, todos institucionalizados; y 27 cuidadores formales, entre 21 y 46 años (36,7 ± 12,3), 10 hombres y 17 mujeres. Los adultos con PC presentan una percepción más positiva de su CdV que la de los cuidadores, con diferencias significativas en todos los dominios, excepto en el bienestar emocional. La correlación intraclase entre las respuestas de ambos grupos es moderada para los dominios de movilidad y apoyos, autodeterminación y bienestar físico, y débil para todos los demás dominios y el índice global. El análisis por tipo de PC y nivel de severidad no muestra diferencias significativas. Se proponen recomendaciones para la investigación y la práctica.
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ALVES-NOGUEIRA, Ana Cláudia; et al. A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research. Research in Developmental Disabilities, [S.l.], v. 96, p. 103514, jan. 2020. Disponível em: https://doi.org/10.1016/j.ridd.2019.103514. Acesso em: 10 ago. 2025.
ARNAUD, Catherine; et al. Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol. BMC Neurology, [S.l.], v. 21, n. 1, p. 254, jun. 2021. Disponível em: https://doi.org/10.1186/s12883-021-02263-z. Acesso em: 10 ago. 2025.
BENNER, Joyce L.; et al. Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy. Archives of Physical Medicine and Rehabilitation, [S.l.], v. 98, n. 11, p. 2196-2205, nov. 2017. Disponível em: https://doi.org/10.1016/j.apmr.2017.03.013. Acesso em: 10 ago. 2025.
BLAIR, Eve; et al. Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index. BMC Neurology, [S.l.], v. 19, n. 1, p. 111, jun. 2019. Disponível em: https://doi.org/10.1186/s12883-019-1343-1. Acesso em: 10 ago. 2025.
BRITO, Olena; SANTOS, Sofia. Escala de qualidade de vida de pessoas adultas com paralisia cerebral (QDV-APC): fichas de registo. Cruz Quebrada: Faculdade de Motricidade Humana, 2025. Documento não publicado.
COLVER, Allan; et al. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions. BMC Medicine, [S.l.], v. 16, n. 1, p. 111, jul. 2018. Disponível em: https://doi.org/10.1186/s12916-018-1102-y. Acesso em: 10 ago. 2025.
COHEN, Jacob. Statistical power analysis for the behavioral sciences. 2. ed. Hillsdale: Lawrence Erlbaum Associates, 1988.
COOPER, Claire; LINDEN, Mark; KERR, Claire. Social participation in adults with cerebral palsy: a systematic review of the evidence-base. Disability and Rehabilitation, [S.l.], v. 46, n. 13, p. 2720-2733, out. 2024. Disponível em: https://doi.org/10.1080/09638288.2023.2236026. Acesso em: 10 ago. 2025.
GANNOTTI, Mary E.; FRUMBERG, David. Clinical therapy services for adults with cerebral palsy: optimizing health and well-being across the lifespan. In: MILLER, Freeman; et al. (Coord.). Cerebral Palsy. [S.l.]: Springer, 2020. p. 1-24. Disponível em: https://doi.org/10.1007/978-3-319-50592-3_158-2. Acesso em: 10 ago. 2025.
GANNOTTI, Mary E.; et al. Adults with cerebral palsy rank factors associated with quality of life and perceived impact of childhood surgery on adult outcomes. Disability and Rehabilitation, [S.l.], v. 43, n. 17, p. 2431-2438, ago. 2021. Disponível em: https://doi.org/10.1080/09638288.2019.1701718. Acesso em: 10 ago. 2025.
GEORGE, Darren; MALLERY, Paul. SPSS for Windows step by step: a simple guide and reference, 11.0 update. 4. ed. Boston: Allyn & Bacon, 2003.
GRAHAM, H. Kerr; et al. Cerebral palsy. Nature Reviews Disease Primers, [S.l.], v. 2, p. 15082, jan. 2016. Disponível em: https://doi.org/10.1038/nrdp.2015.82. Acesso em: 10 ago. 2025
JACOBSON, Dan N. O.; et al. Exploring social participation in young adults with cerebral palsy. Journal of Rehabilitation Medicine, [S.l.], v. 51, n. 3, p. 167-174, fev. 2019. Disponível em: https://doi.org/10.2340/16501977-2517. Acesso em: 10 ago. 2025.
JARL, Johan; ALRIKSSON-SCHMIDT, Ann; RODBY-BOUSQUET, Elisabet. Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors. Disability and Health Journal, [S.l.], v. 12, n. 3, p. 460-466, jul. 2019. Disponível em: https://doi.org/10.1016/j.dhjo.2019.02.002. Acesso em: 10 ago. 2025.
JIANG, Benran; et al. Quality of life in young adults with cerebral palsy. Disability and Health Journal, [S.l.], v. 9, n. 4, p. 673-681, out. 2016. Disponível em: https://doi.org/10.1016/j.dhjo.2016.04.006. Acesso em: 10 ago. 2025.
KOO, Terry K.; LI, Mae Y. A Guideline of Selecting and Reporting Intraclass Correlation Coefficients for Reliability Research. Journal of Chiropractic Medicine, [S.l.], v. 15, n. 2, p. 155-163, jun. 2016. Disponível em: https://doi.org/10.1016/j.jcm.2016.02.012. Acesso em: 10 ago. 2025.
LAPORTA-HOYOS, Olga; et al. Proxy-reported quality of life in adolescents and adults with dyskinetic cerebral palsy is associated with executive functions and cortical thickness. Quality of Life Research, [S.l.], v. 26, n. 5, p. 1209-1222, maio 2017. Disponível em: https://doi.org/10.1007/s11136-016-1433-0. Acesso em: 10 ago. 2025.
MAESTRO-GONZALEZ, Alba; et al. Quality of life as assessed by adults with cerebral palsy. PloS One, [S.l.], v. 13, n. 2, p. e0191960, fev. 2018. Disponível em: https://doi.org/10.1371/journal.pone.0191960. Acesso em: 10 ago. 2025.
MARTÍNEZ-TRAVER, Laura; CERVERA GASCH, Águeda. Calidad de vida en adultos institucionalizados con parálisis cerebral infantil. Enfermería Global, [S.l.], v. 19, n. 57, p. 243-262, jan. 2020. Disponível em: https://doi.org/10.6018/eglobal.19.1.349901. Acesso em: 10 ago. 2025.
MCINTYRE, Sarah; et al. Global prevalence of cerebral palsy: A systematic analysis. Developmental Medicine and Child Neurology, [S.l.], v. 64, n. 12, p. 1494-1506, dez. 2022. Disponível em: https://doi.org/10.1111/dmcn.15346. Acesso em: 10 ago. 2025.
MITCHELL, Devon L.; et al. Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review. Child's Nervous System, [S.l.], v. 39, n. 11, p. 3083-3101, ago. 2023. Disponível em: https://doi.org/10.1007/s00381-023-06080-2. Acesso em: 10 ago. 2025.
NOVA DÍAZ, Diana Marcela; et al. Self-perceived quality of life by institutionalised adults with cerebral palsy in Spain. Gaceta Sanitaria, [S.l.], v. 38, p. 102416, ago. 2024. Disponível em: https://doi.org/10.1016/j.gaceta.2024.102416. Acesso em: 10 ago. 2025.
NOONAN, Vanessa K.; et al. Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health and Quality of Life Outcomes, [S.l.], v. 7, p. 93, nov. 2009. Disponível em: https://doi.org/10.1186/1477-7525-7-93. Acesso em: 10 ago. 2025.
NOVAK, Iona; et al. Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics, [S.l.], v. 130, n. 5, p. e1285-e1312, nov. 2012. Disponível em: https://doi.org/10.1542/peds.2012-0924. Acesso em: 10 ago. 2025.
PETTERSSON, Katina; RODBY-BOUSQUET, Elisabet. Living Conditions and Social Outcomes in Adults With Cerebral Palsy. Frontiers in Neurology, [S.l.], v. 12, p. 749389, out. 2021. Disponível em: https://doi.org/10.3389/fneur.2021.749389. Acesso em: 10 ago. 2025.
REIS, Joana; et al. A Qualidade de Vida na perspetiva das pessoas com Dificuldades Intelectuais, Demência e Paralisia Cerebral: a fiabilidade interrespondente. Revista de Educação Especial e Reabilitação, Lisboa, v. 26, p. 68-85, dez. 2019.
ROSENBAUM, Peter; et al. A report: the definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology, [S.l.], supl. 109, p. 8-14, fev. 2007. Disponível em: https://www.researchgate.net/publication/285476231. Acesso em: 10 ago. 2025.
RODRIGO, António; SANTOS, Sofia; GOMES, Fernando. The Quality of Life of persons with significant support needs: content validity of the Portuguese version of Escala de San Martin. Research and Networks in Health, Leiria, n. 2, p. 1-9, dez. 2016. Disponível em: https://www.researchgate.net/publication/311958198. Acesso em: 10 ago. 2025.
SANTOS, Sofia; MORATO, Pedro; LUCKASSON, Ruth. Psychometric Properties of the Portuguese Version of the Adaptive Behavior Scale. Intellectual and Developmental Disabilities, [S.l.], v. 52, n. 5, p. 379-387, out. 2014. Disponível em: https://doi.org/10.1352/1934-9556-52.5.379. Acesso em: 10 ago. 2025.
SANTOS, Sofia; et al. A avaliação do comportamento adaptativo e funcionalidade em contexto educativo. In: SANTOS, Sofia (Coord.). Diversidade e Educação Inclusiva: instrumentos validados. Lisboa, 2022. p. 63-76 (Coleção Forças de Mudança em Educação). Disponível em: https://www.researchgate.net/publication/364355041. Acesso em: 10 ago. 2025.
SCHALOCK, Robert L.; LUCKASSON, Ruth; TASSÉ, Marc J. Ongoing Transformation in the Field of Intellectual and Developmental Disabilities: Taking Action for Future Progress. Intellectual and Developmental Disabilities, [S.l.], v. 59, n. 5, p. 380-391, out. 2021. Disponível em: https://doi.org/10.1352/1934-9556-59.5.380. Acesso em: 10 ago. 2025.
SCHMIDT, Silke; et al. Quality of life and mental health in emerging adults with cerebral palsy compared to the general population. Health and Quality of Life Outcomes, [S.l.], v. 20, n. 1, p. 61, abr. 2022. Disponível em: https://doi.org/10.1186/s12955-022-01961-7. Acesso em: 10 ago. 2025.
SIMÕES, Cristina; SANTOS, Sofia. The Impact of Personal and Environmental Characteristics on Quality of Life of People with Intellectual Disability. Applied Research in Quality of Life, [S.l.], v. 11, n. 1, p. 1-20, mar. 2017. Disponível em: https://doi.org/10.1007/s11482-016-9466-7. Acesso em: 10 ago. 2025.
SIMÕES, Cristina; SANTOS, Sofia; BISCAIA, Rui. Validation of the Portuguese version of the Personal Outcomes Scale. International Journal of Clinical and Health Psychology, [S.l.], v. 16, n. 2, p. 186-200, maio 2016. Disponível em: https://doi.org/10.1016/j.ijchp.2015.11.002. Acesso em: 10 ago. 2025.
THE WHOQOL GROUP. The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, [S.l.], v. 41, n. 10, p. 1403–1409, nov. 1995. Disponível em: https://doi.org/10.1016/0277-9536(95)00112-K. Acesso em: 10 ago. 2025.
TOMCZAK, Maciej; TOMCZAK-ŁUKASZEWSKA, Ewa. The need to report effect size estimates revisited. An overview of some recommended measures of effect size. Trends in Sport Sciences, [S.l.], v. 21, n. 1, p. 19–25, mar. 2014. Disponível em: https://www.wbc.poznan.pl/publication/413565. Acesso em: 10 ago. 2025.
VAN GORP, Marloes; et al. Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study. Disability and Rehabilitation, [S.l.], v. 42, n. 22, p. 3162-3171, nov. 2020. Disponível em: https://doi.org/10.1080/09638288.2019.1585971. Acesso em: 10 ago. 2025.
VIDART D'EGURBIDE BAGAZGOÏTIA, Nicolas; et al. Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study. Frontiers in Neurology, [S.l.], v. 12, p. 733978, nov. 2021. Disponível em: https://doi.org/10.3389/fneur.2021.733978. Acesso em: 10 ago. 2025.
WALLANDER, Jan; KOOT, Hans. Quality of life in children: A critical examination of concepts, approaches, issues, and future directions. Clinical psychology review, [S.l.], v. 45, p. 131-143, abr. 2016. Disponível em: https://doi.org/10.1016/j.cpr.2015.11.007. Acesso em: 10 ago. 2025.
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