Situación de las familias en el cuidado de un hijo con una enfermedad crónica: un estudio de métodos mixtos

Felizardo, Melissa Joice de Abreu; Macêdo, Maísa Mara Lopes; Henriques, Nayara Luiza; Deodato, Sérgio; Duarte, Elysângela Dittz

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ORIGINAL ARTICLE • Rev. esc. enferm. USP 58 • 2024 • https://doi.org/10.1590/1980-220X-REEUSP-2023-0304en copiar

Situación de las familias en el cuidado de un hijo con una enfermedad crónica: un estudio de métodos mixtos

Autoría SCIMAGO INSTITUTIONS RANKINGS

RESUMEN

Objetivo:

Analizar los significados atribuidos por los familiares a la situación de cuidado de un hijo con una condición crónica (CCC), a la luz del Marco de Estilos de Gestión Familiar (FMSF).

Método:

Estudio de métodos mixtos, paralelo-convergente, orientado por el marco teórico del FMSF, utilizando el componente conceptual “Definición de la Situación”. Participaron 53 familias CCC. Los datos se recogieron mediante una entrevista semiestructurada, un cuestionario para caracterizar a los participantes y una escala de Medida de Gestión Familiar. Se analizaron estadísticas descriptivas e inferenciales para los datos cuantitativos y los datos cualitativos se sometieron a un análisis temático deductivo..

Resultados:

Los familiares relataron una visión de normalidad en relación al CCC, verificada también por la escala de Vida Cotidiana del Niño. Sin embargo, señalan las repercusiones de la condición crónica en la familia, y que dedican más atención y tiempo a la atención de las necesidades de cuidado del niño, lo que también fue verificado en las escalas Visión del Impacto de la Condición y Esfuerzo de Gestión.

Conclusión:

Las familias tienen una visión positiva de la situación de cuidar de CCC en casa, pero señalan algunos efectos negativos, como el mayor tiempo dedicado al cuidado del niño.

DESCRIPTORES
Enfermería de la Familia; Enfermería Pediátrica; Familia; Cuidado del Niño; Enfermedad Crónica

Child’s Dailife Score (minimum: 5 maximum: 25; mean: 15)^a Note: a: Quantitative stage; <15 >15		Integrative analysis
Child’s identity^b b: Qualitative stage.		Integrative analysis
He’s two and a half years old, but he’s like a baby... I have a LOT of work to do with him. If you look at it like that, everything is more difficult. EVERYTHING is more difficult (M8) For me, C16 is a normal child. The only thing C16 doesn’t do is walk. She feeds well, sleeps well. She communicates with you. She’s a normal child. She communicates, talks, calls you, plays with you, hugs you, kisses you (M16)	The only thing that makes it different is that she wears that device on her stomach, that’s all. She’s super smart. There was NOTHING on her little head when I did the MRI. So there are no other problems, no illnesses, which is why today I see it as normal (M10) In reality, she’s considered a normal child. Despite her sight, she doesn’t stop doing anything that a normal child does (M19)	When the scores were higher, the participants showed a perception of normality in the child’s life and daily routine. To a lesser extent, limitations or vulnerabilities were also presented, but with the understanding that the child and their life are not restricted to the chronic condition. The participants with the lowest scores, although indicating positive aspects of the child and their daily life, emphasized limitations and weaknesses in their speeches, showing the impairment caused by the health condition.

Score Scale View of the Impact of the Condition (minimum: 10 maximum: 50; mean: 30)^a Note:a: Quantitative stage; <30 >30		Integrative analysis
View of the disease^b b: qualitative stage.		Integrative analysis
Thank God she’s improved a lot, nowadays she can stand up on her own, she even takes a few steps on her own (...) I’ve accompanied her when she was intubated, I’ve accompanied her when she was parenterally dependent... So there are no difficulties nowadays. The difficulty has passed.” (M5) Today he’s very well. Before he wouldn’t raise his arm, now he raises his arm (...) He’s totally different now. I already dress the left side, and he raises his right arm. He can’t lift it all the way, but he can. (M12)	Because before, we couldn’t accept that such a small child had such a serious illness. We’re afraid that over time it will get worse, but we can’t let it get to us. We’re worried about his medication and hope that later on we’ll be able to reverse something in his condition. (M11)	Participants with lower scores indicating a lower level of concern about the child’s health condition also expressed less concern through their speeches. They say that this has improved over time as the child has developed and there has been less demand for care. Participants with higher scores emphasized the repercussions for the family of caring for a child with a chronic condition. Non-acceptance of the chronic condition also recurred in the speeches.

Management Effort score (minimum: 4 maximum: 20; mean: 12)^a Note:a: Quantitative stage; <12 >12		Integrative analysis
Management mentality^b b: qualitative stage.		Integrative analysis
I’m going to say it’s tiring, because it is tiring. Because there are appointments, there are tests to do. I have to write everything down so I don’t forget, I have to carry it with me. It’s all me, so it’s even more tiring (M33)	I don’t stop at home, I go out with C35 every day to take him to his therapies. It’s tiring for him too and there’s the other one too, who goes along. I have to take the youngest to his brother’s therapy too (M35)	Participants with lower and higher scores on the management scale emphasize the intense routine involved in caring for the children. These speeches highlight the effort and time spent by the family to meet the demands of care, similar to what was identified in the interviews with participants who had higher scores.

Universidade de São Paulo, Escola de Enfermagem Av. Dr. Enéas de Carvalho Aguiar, 419 , 05403-000 São Paulo - SP/ Brasil, Tel./Fax: (55 11) 3061-7553, - São Paulo - SP - Brazil
E-mail: reeusp@usp.br

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[1] Corresponding author: Melissa Joice de Abreu Felizardo, Avenida Professor Alfredo Balena, 190, Santa Efigênia, 30130100 – Belo Horizonte, MG, Brazil, melissajoice@gmail.com