Necesidades sanitarias y socioeducativas de niños con enfermedades raras de tipo metabólico y sus familias: estudio cualitativo en un hospital de tercer nivel

Tejada-Ortigosa, Eva María; Flores-Rojas, Katherine; Moreno-Quintana, Laura; Muñoz-Villanueva, María Carmen; Pérez-Navero, Juan Luís; Gil-Campos, Mercedes

doi:10.1016/j.anpedi.2018.03.003

Cited by 13 publications

(7 citation statements)

References 31 publications

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“…Brown et al [66], for instance, compared the QoL of three types of families: families with a child with Down syndrome, families with a child with autism spectrum disorders, and families with none of their members having a disability. The other five articles focus on specific disabilities, namely deafness [48], intellectual disability [32,67], autism [37] and rare metabolic diseases [68]. (d) Two articles adopt an ethnic perspective.…”

Section: Main Results On Fqol In the 0-to 6-year Stagementioning

confidence: 99%

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Mora

Ibáñez

Balcells‐Balcells

2020

IJERPH

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Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted.

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Section: Main Results On Fqol In the 0-to 6-year Stagementioning

confidence: 99%

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Mora

Ibáñez

Balcells‐Balcells

2020

IJERPH

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“…Healthcare providers play an important role in recognizing and making referrals for appropriate patient management (16). However, there seems to be difficulty obtaining supportive treatment for IEM patients (17) due to a lack of IEM-related knowledge (3). For instance, a majority (73.6%) of healthcare professionals in Hong Kong were unaware of the availability of IEM screening (18).…”

Section: Introductionmentioning

confidence: 99%

Knowledge and perception of inborn errors of metabolism (IEMs) among healthcare students at a selected public university in Klang Valley, Malaysia

Liew

Lim

Yahya

et al. 2022

IRDR

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knowledge, perception, healthcare, inborn errors metabolism Healthcare providers play an important role in improving the health of Inborn Error of Metabolism (IEM) patients. However, IEM knowledge level among local healthcare students has yet to be determined. Thus, the aim of this study is to assess the knowledge and perception of IEM among local healthcare students. An online self-administered questionnaire was distributed to 378 students across the Faculty of Health Science, Pharmacy and Dentistry from a selected public university in Lembah Klang, Malaysia. For knowledge, a score of 1 is assigned to each correct answer with a maximum total score of 14. Likert scale was used to determine their perception of IEM. The total mean score of IEM knowledge among healthcare students is 5.8. There was no significant difference of mean score of IEM knowledge among the students from the Faculty of Health Science (6.1 ± 2.7), Pharmacy (5.5 ± 2.6) and Dentistry (5.8 ± 2.8). However, the score of knowledge is observed to be significantly different by ethnicity, religion and family history of IEM (p < 0.05). Furthermore, students with experience of meeting an IEM patient and attending IEM classes scored higher than those with no experience (p < 0.05). Most of the healthcare students (89.5%) perceived their knowledge to be insufficient and very poor. Majority of the students from faculty of pharmacy (70.8%) agreed that the IEM course should be mandatory compared to health sciences and dentistry (p < 0.05). This study identified an overall inadequacy of knowledge of IEM among healthcare students. There is a pressing need to improve the IEM-related knowledge and awareness of Malaysian healthcare students. This can be accomplished by incorporating online classes that emphasizes the treatment and management of IEMs in the university curriculum.

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“…Esta situación se agrava porque los padres se ven obligados a reducir las horas de trabajo e incluso dejarlo para dedicarse al cuidado del familiar (Landfeldt et al, 2016) Esto obliga a un solo familiar a asumir la responsabilidad financiera y aumentar sus horas de trabajo para hacer frente a ese aspecto. Además de ello, (Tejada et al (2019) referenció que los cuidadores no tienen apoyo para compatibilizar su vida laboral. No obstante, Boele et al (2017) manifestó que algunos cuidadores recibieron apoyo en el trabajo, lo cual puede convertirse en elemento positivo, porque pudieron desempeñarse en su entorno laboral y de igual forma contar con un espacio para el cuidado de su ser querido y solventar las necesidades financieras.…”

Section: Fuente: Autoría De Los Investigadoresunclassified

Necesidades de cuidadores familiares de personas con enfermedades huérfanas: cerrando brechas a través del cuidado enfermero

Reyes

López

Aragón

2020

RCCS

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Objetivo: establecer las necesidades de los cuidadores familiares de personas con enfermedades huérfanas teniendo en cuenta el Modelo de la Enfermería Adventista. Metodología: revisión de literatura que abarcó artículos cuantitativos y cualitativos hallados en bases de datos y revistas indexadas en idiomas español, inglés y portugués, entre los años 2014 y 2019, cuyo rigor metodológico cumplieran criterios STROBE, COREQ, PRISMA y JADAD. La información obtenida fue relacionada con el modelo de la Enfermería Adventista, NOC y NIC. Resultados: Se seleccionaron 28 artículos que analizaban necesidades físicas, psicológicas, sociales, educativas, espirituales, sanitarias y económicas en los cuidadores de personas con enfermedades huérfanas, que requerían soporte multidisciplinar e integral, incluyendo apoyo espiritual enfermero mediante intervenciones propuestas por la NIC y el modelo de Enfermería Adventista (cuidado, conexión con Dios y el otro, y empoderamiento del cuidador en su propia salud). Conclusión: Las necesidades de los cuidadores abarcan diferentes áreas del ser, que pueden ser abordadas con intervenciones independientes e interdependientes, identificadas mediante modelos teóricos.

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Necesidades sanitarias y socioeducativas de niños con enfermedades raras de tipo metabólico y sus familias: estudio cualitativo en un hospital de tercer nivel

Cited by 13 publications

References 31 publications

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Knowledge and perception of inborn errors of metabolism (IEMs) among healthcare students at a selected public university in Klang Valley, Malaysia

Necesidades de cuidadores familiares de personas con enfermedades huérfanas: cerrando brechas a través del cuidado enfermero

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