Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral
En la parálisis cerebral como condición de salud infantil más común es clave un diagnóstico temprano y un abordaje transdisciplinario allí cobra especial relevancia el rol de los diferentes actores implicados en el proceso de rehabilitación, particularmente, los familiares o cuidadores del niño como barreras o facilitadores. Objetivo: analizar las implicaciones del rol de la familia/cuidador como barrera o facilitador frente a la atención fisioterapéutica integral en la parálisis cerebral. Metodología: se realizó una revisión integradora. Resultados: se documentaron seis características de los roles de familiares/cuidadores: “esfuerzo”, “actitud”, “mentalidad inclusiva”, “tolerancia a la frustración”, “comunicación” y “empoderamiento”, adem... Ver más
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Movimiento científico - 2023
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Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral Joslin Alexei Dogbe, Joana D. A. Kyeremateng, Maxwell Peprah Opoku, William Nketsia & Charles Hammond (2019): ‘There is family tension, but they understand…’: familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana, International Journal of Developmental Disabilities, DOI: 10.1080/20473869.2019.1573572 Ministerio de Ciencia y Tecnología de Colombia. (s. f.). Declaración de Helsinki. Recuperado 5 de noviembre de 2022, de https://minciencias.gov.co/sites/default/files/ckeditor_files/6.pdf McCoy SW, Bartlett D, Palisano R, et al. (2019). Understanding the Development of Children with Cerebral Palsy and How Therapy May Affect Patient-Centered Outcomes. Patient-Centered Outcomes Research Institute (PCORI). https://doi.org/10.25302/8.2019.CE.12115321 Sadowska, M; Sarecka-Hujar, B & Kopyta, I (2020) Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options, Neuropsychiatric Disease and Treatment,, 1505-1518, DOI: 10.2147/NDT.S235165 Martínez De Zabarte Fernández, J. M., Ros Arnal, I., Peña Segura, J. L., García Romero, R., & Rodríguez Martínez, G. (2021). Carga del cuidador del paciente con parálisis cerebral moderada-grave: ¿influye el estado nutricional? Anales de Pediatría, 94(5), 311-317. https://doi.org/10.1016/j.anpedi.2020.06.020 Lostelius, P; Ståhle-Öberg, L & Fjellman-Wiklund, A (2019) Pain in children with cerebral palsy – adolescent siblings’ awareness of pain and perceived influence on their family, European Journal of Physiotherapy, 21:3, 164-170, DOI: 10.1080/21679169.2018.1505946 Lilly, H., Bitzel, M., Pejnovic, T., Schnell, J., & Doty, A. (2019). Barriers and characteristics for successful transition to adult healthcare for individuals with cerebral palsy: A systematic review. Physical Therapy Reviews, 24(5), 195-207. https://doi.org/10.1080/10833196.2019.1662995 Ismail, A., Sk Abd Razak, R., Suddin, L. S., Mahmud, A., Kamaralzaman, S., & Yusri, G. (2022). The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study. International Journal of Environmental Research and Public Health, 19(1), 475. https://doi.org/10.3390/ijerph19010475 Kalleson R, Jahnsen R, Østensjø S. Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family, and service characteristics. Child Care Health Dev. 2020;46:19–27. https://doi.org/10.1111/cch.12716 Kårstad, S.B.; Bjørseth, Å.; Lindstedt, J.; Brenne, A.S.; Steihaug, H.; Elvrum, A.-K.G. Parental Coping, Representations, and Interactions with Their Infants at High Risk of Cerebral Palsy. J. Clin. Med. 2023, 12, 277. https://doi.org/10.3390/ jcm12010277 Harniess, P; Purna Basu, A; Bezemer, J & Gibbs, D (2023): How do parents frame their engagement experience in early intervention? A grounded theory study, Disability and Rehabilitation, DOI: 10.1080/09638288.2023.2242788 Milićević, M (2021): Exploring participation in family activities among Serbian children with cerebral palsy and children with typical development: diversity, frequency, children’s presence, and engagement, Disability and Rehabilitation, DOI: 10.1080/09638288.2021.1958931 Guimarães, A.; Pereira, A.; Oliveira, A.; Lopes, S.; Nunes, A.R.; Zanatta, C.; Rosário, P. Parenting in Cerebral Palsy: Understanding the Perceived Challenges and Needs Faced by Parents of Elementary School Children. Int. J. Environ. Res. Public Health 2023, 20, 3811. https:// doi.org/10.3390/ijerph20053811 Gugała B. Caregiver burden versus intensity of anxiety and depression symptoms in parents of children with cerebral palsy as well as factors potentially differentiating the level of burden: a cross-sectional study (Poland). BMJ Open 2021;11:e036494. doi:10.1136/ bmjopen-2019-036494 Gourang, A., & Sharma, R. (2019). Factors Influencing Utilization of Physiotherapy Service among Children with Cerebral Palsy in Jalandhar District of Punjab. Neurosciences in Rural Practice |, 209-215. https://doi.org/10.4103/0976-3147.203852 Gannotti, M; Blanchard, Y; Blumberg, L & LaRocco, D. (2018): Shared meanings of success, happiness, and health among adults with cerebral palsy and physiotherapists: implications for practice and research, Disability and Rehabilitation, DOI: 10.1080/09638288.2018.1425488 Ferreira, R. de C., Alves, C. R. L., Guimarães, M. A. P., de Menezes, K. K. P., & Magalhães, L. de C. (2020). Effects of early interventions focused on the family in the development of children born preterm and/or at social risk: A meta-analysis. Jornal de Pediatria, 96(1), 20-38. https://doi.org/10.1016/j.jped.2019.05.002 Ferreira, M. C., Garcia, N. R., Prudente, C. O. M., & Ribeiro, M. F. M. (2020). Quality of life of adolescents with cerebral palsy: Agreement between self-report and caregiver’s report*. Revista Latinoamericana de Enfermagem, 28, e3300. https://doi.org/10.1590/1518-8345.3928.3300 Díaz-Morales C, Rodríguez-Borges Y, Sánchez-Castillo Y, Dunn-García E. (2020). Calidad de vida en el cuidador primario informal familiar del niño con parálisis cerebral profunda. Revista Cubana de Medicina Física y Rehabilitación. Dieleman LM, Soenens B, Prinzie P, De Clercq L, Ortibus E, De Pauw SSW (2020). Daily parenting of children with cerebral palsy: The role of daily child behavior, parents’ daily psychological needs, and mindful parenting. Development and Psychopathology 1–17. https://doi.org/10.1017/S0954579419001688 Cook, G; Cassidy, E & Kilbride, C (2023) Understanding physiotherapy and physiotherapy services: exploring the perspectives of adults living with cerebral palsy, Disability and Rehabilitation, 45:8, 1389-1397, DOI: 10.1080/09638288.2022.2062060 Ministerio de Salud y Protección Social. (1993). Resolución No. 008430 de 1993. https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/DIJ/RESOLUCION-8430-DE-1993.PDF Mwinbam, M. M., Suglo, J. N., Agyeman, Y. N., & Kukeba, M. W. (2023). Family caregivers’ experience of care with a child with cerebral palsy: The lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatrics Open, 7(1), e001807. https://doi.org/10.1136/bmjpo-2022-001807. Carretero Díaz, M. Á., & Barrientos-Báez, A. (2019). Necesidad de formar a los cuidadores de personas en situación de dependencia: Comunicación y respuesta desde la UCM. Revista de Comunicación y Salud, 9(1), 19-38. https://doi.org/10.35669/revistadecomunicacionysalud.2019.9(1).19-38 Ying, K., Rostenberghe, H. V., Kuan, G., Mohd Yusoff, M. H. A., Ali, S. H., & Yaacob, N. S. (2021). Health-Related Quality of Life and Family Functioning of Primary Caregivers of Children with Cerebral Palsy in Malaysia. International Journal of Environmental Research and Public Health, 18(5), 2351. https://doi.org/10.3390/ijerph18052351 Text http://purl.org/coar/access_right/c_abf2 info:eu-repo/semantics/openAccess http://purl.org/coar/version/c_970fb48d4fbd8a85 info:eu-repo/semantics/publishedVersion http://purl.org/redcol/resource_type/ARTREF http://purl.org/coar/resource_type/c_6501 info:eu-repo/semantics/article Whittemore, R. (2005) Analysis of integration in nursing science and practice. Journal of Nursing Tjitske Hielkema, Anke G. Boxum, Elisa G. Hamer, Sacha La Bastide- Van Gemert, Tineke Dirks, Heleen A. Reinders-Messelink, Carel G. B. Maathuis, Johannes Verheijden, Jan H. B. Geertzen & Mijna Hadders-Algra (2020) LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome, Disability and Rehabilitation, 42:26, 3762-3770, DOI: 10.1080/09638288.2019.1610509 M. Madzhie, K.E. Mphephu, V. Baloyi & M. Chueng | (2022) The challenges experienced by mothers with children suffering from cerebral palsy: A study conducted at Mutale Municipality, South Africa, Cogent Psychology, 9:1, 2043020, DOI: 10.1080/23311908.2022.2043020. Schwabe, A. L. (2020). Comprehensive Care in Cerebral Palsy. Physical Medicine and Rehabilitation Clinics of North America, 31(1), 1-13. https://doi.org/10.1016/j.pmr.2019.09.012 Rossler, M., Wilke, A., Griss, P., & Kienapfel, H. (2001). CIF Clasificación Internacional del Funcinamiento, de la discapacidad y la salud. Organización Mundial de la Salud, 8(1), 7-16. Riquelme, I.; Sabater-Gárriz, Á.; Montoya, P. Pain and Communication in Children with Cerebral Palsy: Influence on Parents’ Perception of Family Impact and Healthcare Satisfaction. Children 2021, 8, 87. https://doi.org/10.3390/ children8020087 Pérez, E. M. (2019). Cambios psicosociales, salud y calidad de vida de padres de niños con parálisis cerebral. Revista de Neuro-Psiquiatria, 82(4), 258-265. https://doi.org/10.20453/rnp.v82i4.3647 Peláez-Cantero, M. J., Gallego-Gutiérrez, S., Moreno-Medinilla, E. E., Cordón-Martínez, A., Madrid-Rodriguez, A., Núñez-Cuadros, E., & Ramos-Fernández, J. M. (2021). Parálisis Cerebral en Pediatría: Problemas Asociados. Revista Ecuatoriana de Neurologia, 30(1), 115-124. https://doi.org/10.46997/revecuatneurol30100115 Park, E. Y., & Nam, S. J. (2019). Time burden of caring and depression among parents of individuals with cerebral palsy. Disability and Rehabilitation, 41(13), 1508-1513. https://doi.org/10.12080/09638288.2018.1432705 Novak, I., & Honan, I. (2019). Effectiveness of paediatric occupational therapy for children with disabilities: A systematic review. Australian Occupational Therapy Journal, 66(3), 258-273. https://doi.org/10.1111/1440-1630.12573 Moslem Dehghanizadeh, Mitra Khalafbeigi, Malahat Akbarfahimi, Farzaneh Yazdani & Armin Zareiyan (2020): Exploring the contributing factors that influence the volition of adolescents with cerebral palsy: A directed content analysis, Scandinavian Journal of Occupational Therapy, DOI: 10.1080/11038128.2020.1723686 Musazzi M., Aladro I., Catoira Nataia P., Vidal Andrea F., Aguilo Alicia F. & Viale L. (2020) Compromiso psicofísico en cuidadores de niños con parálisis cerebral, Centro Asistencial Universitario, Universidad Nacional de San Martín, San Martín, Buenos Aires, Argentina, https://doi.org/10.1016/j.neuarg.2020.02.003 Claire Cooper, Mark Linden & Claire Kerr (2023): Social participation in adults with cerebral palsy: a systematic review of the evidence-base, Disability and Rehabilitation, DOI: 10.1080/09638288.2023.2236026 Boztepe, Handan; Çınar, Sevil; Ay, Ayşe; Kerimoğlu Yıldız, Gizem; Kılıç, Cengiz (2018). Predictors of caregiver burden in mothers of children with leukemia and cerebral palsy. Journal of Psychosocial Oncology, (), 1–10. doi:10.1080/07347332.2018.1489441 Bolaños-Roldán, A. M. (2022). Percepción de carga de un grupo de cuidadores de adolescentes con parálisis cerebral. Enfermería Global, 21(4), 460-483. https://doi.org/10.6018/eglobal.520121. Entorno social application/pdf Artículo de revista 1 17 Neurología Rehabilitación Fisioterapia Movimiento científico Cuidadores Rehabilitación Parálisis cerebral Suárez Muñoz, Lina Giccela Restrepo Jiménez, Natalia Santos Gómez, Jhon F. En la parálisis cerebral como condición de salud infantil más común es clave un diagnóstico temprano y un abordaje transdisciplinario allí cobra especial relevancia el rol de los diferentes actores implicados en el proceso de rehabilitación, particularmente, los familiares o cuidadores del niño como barreras o facilitadores. Objetivo: analizar las implicaciones del rol de la familia/cuidador como barrera o facilitador frente a la atención fisioterapéutica integral en la parálisis cerebral. Metodología: se realizó una revisión integradora. Resultados: se documentaron seis características de los roles de familiares/cuidadores: “esfuerzo”, “actitud”, “mentalidad inclusiva”, “tolerancia a la frustración”, “comunicación” y “empoderamiento”, además se identificaron elementos socioculturales y contextuales con influencia en la calidad de vida de las personas con esta discapacidad y su progreso dentro de la rehabilitación, tales como: el hogar, la escuela y las actividades de ocio; así como las actitudes de la familia. Conclusiones: el cuidador de una persona con parálisis cerebral actúa en diferentes contextos, conllevando ajustes dentro de su rutina diaria, estos pueden ir en perjuicio o beneficio de él y la persona a su cargo, provocando efectos negativos o positivos dentro del proceso de rehabilitación, incluyendo la misma condición de salud. Bogotá: Corporación Universitaria Iberoamericana Publication Abdullahi, A. (2020). Caregiver’ s perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: A qualitative study. BMC, 1-9. Alves-Nogueira, A. C., Silva, N., McConachie, H., & Carona, C. (2020). A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research. Research in Developmental Disabilities, 96. https://doi.org/10.1016/j.ridd.2019.103514 Esta obra está bajo una licencia internacional Creative Commons Atribución-NoComercial-CompartirIgual 4.0. Movimiento científico - 2023 https://creativecommons.org/licenses/by-nc-sa/4.0 Español Abdullahi, A., & Isah, A. (2020). Caregiver’s perspectives on facilitators and barriers of active participation in cerebral palsy rehabilitation in North West Nigeria: A qualitative study. BMC Health Services Research, 20(1), 615. https://doi.org/10.1186/s12913-020-05487-w Arias Becerra, N. J., Ayala Hernández, J. M., Taborda Mazo, A., Choperena Posada, A., González Mejía, A., Naranjo Lopez, J. F., & Tuberquia Velásquez, M. C. (2021). Prácticas sobre cuidado de niños con discapacidad construidas por cuidadores del Instituto de Capacitación Los Álamos. Enfermería: Cuidados Humanizados, 10(2), 191-203. https://doi.org/10.22235/ech.v10i2.2485 Bartolac, A & Sangster, C (2018): Understanding the everyday experience of persons with physical disabilities: Building a model of social and occupational participation, Journal of Occupational Science, DOI: 10.1080/14427591.2018.1522597 Bezerra, P. D. S., Silva, S. S. D. C., & Pontes, F. A. R. (2020). Percepções de cuidadoras de crianças com Paralisia Cerebral sobre profissionais de saúde. Psicologia Revista, 29(1), 223-245. https://doi.org/10.23925/2594-3871.2020v29i1p223-245 https://revmovimientocientifico.ibero.edu.co/article/view/2644 Social environment In cerebral palsy as the most common childhood health condition, an early diagnosis and a multidisciplinary approach are key, where the role of the different actors involved in the rehabilitation process is especially relevant, particularly family members or caregivers of the child as barriers or facilitators. Objective: to analyze the implications of the role of the family/caregiver as a barrier or facilitator against physiotherapy care in cerebral palsy. Methodology: an integrative review. Results: six characteristics of the roles of family members/caregivers were documented: "effort", "attitude", "inclusive mentality", "frustration tolerance", "communication" and "empowerment", as well as environmental factors that transform the quality of life of people with this disability and their progress within rehabilitation, such as home, school and activities of leisure; as well as family attitudes. Conclusions: the caregiver of a person with CP acts in different contexts, entailing adjustments within their daily routine, these can be to the detriment or benefit of him and the person in his charge, causing negative or positive effects within the rehabilitation process, including the same health condition. Rehabilitation Caregivers Physical therapy Cerebral palsy Journal article Rehabilitation Neurology The Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral 2463-2236 https://revmovimientocientifico.ibero.edu.co/article/download/2644/1905 10 1 https://doi.org/10.33881/2011-7191.mct.17101 10.33881/2011-7191.mct.17101 2023-12-14T00:00:00Z 2023-12-14T00:00:00Z 2023-12-14 2011-7191 |
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CORPORACIÓN UNIVERSITARIA IBEROAMERICANA |
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Colombia |
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Movimiento Científico |
| title |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| spellingShingle |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral Suárez Muñoz, Lina Giccela Restrepo Jiménez, Natalia Santos Gómez, Jhon F. Entorno social Neurología Rehabilitación Fisioterapia Cuidadores Rehabilitación Parálisis cerebral Social environment Rehabilitation Caregivers Physical therapy Cerebral palsy Rehabilitation Neurology |
| title_short |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| title_full |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| title_fullStr |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| title_full_unstemmed |
Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| title_sort |
rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| title_eng |
The Rol del cuidador como facilitador o barrera frente al abordaje fisioterapéutico en la parálisis cerebral |
| description |
En la parálisis cerebral como condición de salud infantil más común es clave un diagnóstico temprano y un abordaje transdisciplinario allí cobra especial relevancia el rol de los diferentes actores implicados en el proceso de rehabilitación, particularmente, los familiares o cuidadores del niño como barreras o facilitadores. Objetivo: analizar las implicaciones del rol de la familia/cuidador como barrera o facilitador frente a la atención fisioterapéutica integral en la parálisis cerebral. Metodología: se realizó una revisión integradora. Resultados: se documentaron seis características de los roles de familiares/cuidadores: “esfuerzo”, “actitud”, “mentalidad inclusiva”, “tolerancia a la frustración”, “comunicación” y “empoderamiento”, además se identificaron elementos socioculturales y contextuales con influencia en la calidad de vida de las personas con esta discapacidad y su progreso dentro de la rehabilitación, tales como: el hogar, la escuela y las actividades de ocio; así como las actitudes de la familia. Conclusiones: el cuidador de una persona con parálisis cerebral actúa en diferentes contextos, conllevando ajustes dentro de su rutina diaria, estos pueden ir en perjuicio o beneficio de él y la persona a su cargo, provocando efectos negativos o positivos dentro del proceso de rehabilitación, incluyendo la misma condición de salud.
|
| description_eng |
In cerebral palsy as the most common childhood health condition, an early diagnosis and a multidisciplinary approach are key, where the role of the different actors involved in the rehabilitation process is especially relevant, particularly family members or caregivers of the child as barriers or facilitators. Objective: to analyze the implications of the role of the family/caregiver as a barrier or facilitator against physiotherapy care in cerebral palsy. Methodology: an integrative review. Results: six characteristics of the roles of family members/caregivers were documented: "effort", "attitude", "inclusive mentality", "frustration tolerance", "communication" and "empowerment", as well as environmental factors that transform the quality of life of people with this disability and their progress within rehabilitation, such as home, school and activities of leisure; as well as family attitudes. Conclusions: the caregiver of a person with CP acts in different contexts, entailing adjustments within their daily routine, these can be to the detriment or benefit of him and the person in his charge, causing negative or positive effects within the rehabilitation process, including the same health condition.
|
| author |
Suárez Muñoz, Lina Giccela Restrepo Jiménez, Natalia Santos Gómez, Jhon F. |
| author_facet |
Suárez Muñoz, Lina Giccela Restrepo Jiménez, Natalia Santos Gómez, Jhon F. |
| topicspa_str_mv |
Entorno social Neurología Rehabilitación Fisioterapia Cuidadores Rehabilitación Parálisis cerebral |
| topic |
Entorno social Neurología Rehabilitación Fisioterapia Cuidadores Rehabilitación Parálisis cerebral Social environment Rehabilitation Caregivers Physical therapy Cerebral palsy Rehabilitation Neurology |
| topic_facet |
Entorno social Neurología Rehabilitación Fisioterapia Cuidadores Rehabilitación Parálisis cerebral Social environment Rehabilitation Caregivers Physical therapy Cerebral palsy Rehabilitation Neurology |
| citationvolume |
17 |
| citationissue |
1 |
| publisher |
Bogotá: Corporación Universitaria Iberoamericana |
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Movimiento científico |
| source |
https://revmovimientocientifico.ibero.edu.co/article/view/2644 |
| language |
Español |
| format |
Article |
| rights |
http://purl.org/coar/access_right/c_abf2 info:eu-repo/semantics/openAccess Esta obra está bajo una licencia internacional Creative Commons Atribución-NoComercial-CompartirIgual 4.0. Movimiento científico - 2023 https://creativecommons.org/licenses/by-nc-sa/4.0 |
| references |
Joslin Alexei Dogbe, Joana D. A. Kyeremateng, Maxwell Peprah Opoku, William Nketsia & Charles Hammond (2019): ‘There is family tension, but they understand…’: familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana, International Journal of Developmental Disabilities, DOI: 10.1080/20473869.2019.1573572 Ministerio de Ciencia y Tecnología de Colombia. (s. f.). Declaración de Helsinki. Recuperado 5 de noviembre de 2022, de https://minciencias.gov.co/sites/default/files/ckeditor_files/6.pdf McCoy SW, Bartlett D, Palisano R, et al. (2019). Understanding the Development of Children with Cerebral Palsy and How Therapy May Affect Patient-Centered Outcomes. Patient-Centered Outcomes Research Institute (PCORI). https://doi.org/10.25302/8.2019.CE.12115321 Sadowska, M; Sarecka-Hujar, B & Kopyta, I (2020) Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options, Neuropsychiatric Disease and Treatment,, 1505-1518, DOI: 10.2147/NDT.S235165 Martínez De Zabarte Fernández, J. M., Ros Arnal, I., Peña Segura, J. L., García Romero, R., & Rodríguez Martínez, G. (2021). Carga del cuidador del paciente con parálisis cerebral moderada-grave: ¿influye el estado nutricional? Anales de Pediatría, 94(5), 311-317. https://doi.org/10.1016/j.anpedi.2020.06.020 Lostelius, P; Ståhle-Öberg, L & Fjellman-Wiklund, A (2019) Pain in children with cerebral palsy – adolescent siblings’ awareness of pain and perceived influence on their family, European Journal of Physiotherapy, 21:3, 164-170, DOI: 10.1080/21679169.2018.1505946 Lilly, H., Bitzel, M., Pejnovic, T., Schnell, J., & Doty, A. (2019). Barriers and characteristics for successful transition to adult healthcare for individuals with cerebral palsy: A systematic review. Physical Therapy Reviews, 24(5), 195-207. https://doi.org/10.1080/10833196.2019.1662995 Ismail, A., Sk Abd Razak, R., Suddin, L. S., Mahmud, A., Kamaralzaman, S., & Yusri, G. (2022). The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study. International Journal of Environmental Research and Public Health, 19(1), 475. https://doi.org/10.3390/ijerph19010475 Kalleson R, Jahnsen R, Østensjø S. Empowerment in families raising a child with cerebral palsy during early childhood: Associations with child, family, and service characteristics. Child Care Health Dev. 2020;46:19–27. https://doi.org/10.1111/cch.12716 Kårstad, S.B.; Bjørseth, Å.; Lindstedt, J.; Brenne, A.S.; Steihaug, H.; Elvrum, A.-K.G. Parental Coping, Representations, and Interactions with Their Infants at High Risk of Cerebral Palsy. J. Clin. Med. 2023, 12, 277. https://doi.org/10.3390/ jcm12010277 Harniess, P; Purna Basu, A; Bezemer, J & Gibbs, D (2023): How do parents frame their engagement experience in early intervention? A grounded theory study, Disability and Rehabilitation, DOI: 10.1080/09638288.2023.2242788 Milićević, M (2021): Exploring participation in family activities among Serbian children with cerebral palsy and children with typical development: diversity, frequency, children’s presence, and engagement, Disability and Rehabilitation, DOI: 10.1080/09638288.2021.1958931 Guimarães, A.; Pereira, A.; Oliveira, A.; Lopes, S.; Nunes, A.R.; Zanatta, C.; Rosário, P. Parenting in Cerebral Palsy: Understanding the Perceived Challenges and Needs Faced by Parents of Elementary School Children. Int. J. Environ. Res. Public Health 2023, 20, 3811. https:// doi.org/10.3390/ijerph20053811 Gugała B. 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