Health Care Transition Experiences of Young Adults With Cerebral Palsy

Carroll, Ellen McLaughlin

doi:10.1016/j.pedn.2015.05.018

Cited by 31 publications

(51 citation statements)

References 18 publications

(18 reference statements)

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“…Fears of a cancer diagnosis creating anxiety within the family and subsequent treatment-related decision making, and inaccurate cancer knowledge may affect decisions to pursue screenings/ treatments. Family members, peers, and disability professionals, who can help participation in exams and support decision making, have been cited as important facilitators to accessing health care (Carroll, 2015;Nicolaidis et al, 2015). However, many individuals with IDD report having a lack of emotional support (Havercamp & Scott, 2015).…”

Section: Environmentmentioning

confidence: 99%

See 1 more Smart Citation

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review

Williamson

Contreras

Rodriguez

et al. 2017

OTJR: Occupational Therapy Journal of Research

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Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study's purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.

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Section: Environmentmentioning

confidence: 99%

“…Providers report a need for improvement with transitions (Zerbo et al, 2015). Carroll (2015) found individuals with CP report discomfort transitioning to adult care providers who are not as knowledgeable regarding their condition. In addition, there is limited availability of adult care providers competent in treating individuals with CP .…”

Section: Environmentmentioning

confidence: 99%

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review

Williamson

Contreras

Rodriguez

et al. 2017

OTJR: Occupational Therapy Journal of Research

View full text Add to dashboard Cite

show abstract

“…La necesidad de realizar el proceso de transición y no una transferencia, es la dificultad que presentan los pacientes (adolescentes y adultos jóvenes) para adaptarse a un nuevo modelo de atención, sobre todo en cuanto a los cambios en los roles a asumir, la relación con sus nuevos médicos tratantes y los sentimientos con respecto al anterior personal de salud; estas condiciones impactan directamente en la morbilidad y bienestar del paciente (35)(36)(37) .…”

Section: Preparación Para La Transiciónunclassified

“…Incluso hasta el 80% de los pacientes adultos con diagnóstico de epilepsia de inicio en la infancia, aun con control de la enfermedad, pueden presentar algún tipo de déficit cognitivo, alteración comportamental o comorbilidad psiquiátrica (49) . La parálisis cerebral es un claro ejemplo de condición neurológica cuya incidencia se ha mantenido en el tiempo, actualmente la mayoría de los pacientes con parálisis cerebral sobrevivirán a la adultez siendo un importante reto de manejo para sus padres y equipo médico (35) . Es importante el reconocimiento de las alteraciones cognitivas durante la infancia para preparar a los padres y definir el requerimiento de procesos de interdicción que den el poder legal a los cuidadores para permitir continuidad en el acceso de los servicios de salud.…”

Section: Consideraciones Especialesunclassified

Transición del cuidado pediátrico al cuidado adulto ¿una realidad para la cual no estamos preparados?

Urrea-Sepulveda

Tovar

2020

Univ. Salud

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Introducción: La sobrevida de pacientes pediátricos con enfermedades crónicas cada vez es mayor a nivel mundial, tendencia que es similar en Colombia. La mayoría de estos pacientes realizaran la transición a la adultez y con ésta a los servicios médicos de adultos. Objetivo: Evidenciar la importancia de hacer una adecuada transición del paciente con enfermedades crónicas, del cuidado pediátrico a la atención del adulto, describir las características, barreras, riesgos y consecuencias de un proceso inadecuado. Materiales y métodos: Se realizó revisión de la literatura a partir de la búsqueda de información relacionada. Resultados: Se seleccionaron 50 artículos en diferentes revistas académicas. Con la información expuesta se describen las definiciones de enfermedad crónica, transición y transferencia al cuidado adulto, los riesgos de los adolescentes con enfermedades crónicas, la preparación y los diferentes pasos para hacer la transición y las consideraciones especiales. Conclusiones: La literatura a nivel mundial recalca la importancia de la realización de un proceso de transición esencial para garantizar el mantenimiento de la salud en los pacientes con enfermedades crónicas, sin embargo, no se encuentran guías o literatura al respecto realizadas en Colombia.

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“…These are slightly outside the remit of this review, but the experience of those undergoing transition in cerebral palsy (CP) is salutary in this regard. For in CP, the primary barriers to transition identified have been the navigation of the complex systems of services and supports, the lack of information and resources, and finally societal prejudices and stigmas toward individuals with disability (31)(32)(33). The parallel for LTV patients is obvious, with examples including the financial implications of the potential transfer of funding from the parents directly to the patient.…”

Section: Patient Preparation and Engagementmentioning

confidence: 99%

Transition to Adult Care in Children on Long-Term Ventilation

2020

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The number of children on long-term ventilation (LTV) has exponentially increased over the past few decades. Improvements in management of ventilation coupled with improvements in standards of medical care are increasingly allowing young people on LTV to survive into adulthood. The process of transition from the pediatric to the adult healthcare system is challenging and requires special attention. This review aims to provide an overview on transition to adult care for children on LTV. Firstly, examining effective models of transition in other childhood onset chronic conditions as a template, whilst highlighting the unique aspects of transition in LTV patients and secondly, summarizing the main relevant findings in the literature on the topic and emphasizing the importance of a multidisciplinary approach to this process.

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Health Care Transition Experiences of Young Adults With Cerebral Palsy

Cited by 31 publications

References 18 publications

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review

Transición del cuidado pediátrico al cuidado adulto ¿una realidad para la cual no estamos preparados?

Transition to Adult Care in Children on Long-Term Ventilation

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