Families’ situation of caring for a child with a chronic condition: a mixed methods study

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

doi:10.1590/1980-220X-REEUSP-2023-0304en

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

Families’ situation of caring for a child with a chronic condition: a mixed methods study^* * Extracted from the Thesis: “Family Management in the Care of Children in Chronic Condition Returning from the Neonatal Intensive Care Unit: A Mixed Methods Study", Universidade Federal de Minas Gerais, 2022.

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

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objective:

To analyze the meanings attributed by family members to the situation of caring for a child with a chronic condition (CCC), in the light of the Family Management Style Framework (FMSF).

Method:

A mixed-methods, parallel-convergent study, guided by the FMSF theoretical framework, using the conceptual component “Definition of the Situation”. Fifty-three CCC families took part. Data was collected using a semi-structured interview, a questionnaire to characterize the participants and a Family Management Measure scale. Descriptive and inferential statistical analysis was carried out on the quantitative data and the qualitative data was subjected to deductive thematic analysis.

Results:

Family members reported a view of normality in relation to CCC, also verified by the Child’s Daily Life scale. However, they indicate the repercussions of the chronic condition on the family, and that they devote more attention and time to meeting the child’s care needs, which was also verified in the View of the Impact of the Condition and Management Effort scales.

Conclusion:

Families have a positive view of the situation of caring for CCC at home, but point out some negative effects, such as the greater time spent caring for the child.

DESCRIPTORS
Family Nursing; Pediatric Nursing; Family; Child Care; Chronic Disease

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