Family perspective on caring for children with chronic conditions in the pre- and trans-pandemic contexts of COVID-19

Henriques, Nayara Luiza; Breves, Maísa Mara Lopes Macêdo; Felizardo, Melissa Joice de Abreu; Galdino, Gabriel Lucas Santos; Almeida, Samylla Alves de; Duarte, Elysângela Dittz

doi:10.1590/1980-220X-REEUSP-2025-0448en

person Nayara Luiza Henriques

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0000-0003-0765-187X

person Maísa Mara Lopes Macêdo Breves

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0000-0002-8075-6857

person Melissa Joice de Abreu Felizardo

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0000-0003-0706-3170

person Gabriel Lucas Santos Galdino

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0009-0007-3062-2598

person Samylla Alves de Almeida

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0009-0002-0044-2231

person Elysângela Dittz Duarte

schoolUniversidade Federal de Minas Gerais, Escola de Enfermagem, Departamento de Enfermagem Materno-Infantil e Saúde Pública, Belo Horizonte, MG, Brazil.

0000-0001-8170-7523

Corresponding author: Nayara Luiza Henriques Avenida Augusto de Lima, 152, Centro30190-001 – Belo Horizonte, MG, Brazil
nayaraluizah@gmail.com

ASSOCIATE EDITOR

Ivone Evangelista Cabral

Child identity
Family perspective	Pattern of perspective variation	Empirical data
Family perspective	Pattern of perspective variation	Pre-pandemic context	Trans-pandemic context
Children’s susceptibility to illness in the trans-pandemic context^{(M1, M2, M3, M5, M6, M8, M9, M14, M16, M17, M18, M21 and M22)}	Worsening	He’s a calm boy, not one of those kids who lives in the hospital. Health-wise, he’s calm [...] and he can already talk and stand up! (M1)	I’m really afraid he’ll catch the coronavirus. Because he has bronchitis, I think it’s easier for him to catch it. His immunity is lower, right? He’s in the high-risk group. (M1)
The need for continued care in both contexts^{(M8, M12 and M13)}	No modifications	C12 requires 24-hour attention. For everything she does, she depends on someone. (M12)	She is a child who needs care all the time, for everything: to eat, to bathe, to move around. Her motor skills are completely compromised. (M12)
A view of normality in both contexts^{(M3, F4, M6, M7, A11, F15, M20, M23, M24)}	No modifications	We already see C15 as a normal child because she is super intelligent. Her development is good. (F15)	Her development is excellent. During the pandemic, thank God, she is developing well. Everything is normal. (F15)
Capacity for developing activities^{(M2, M3, M4, M5, M6, M7, M9, M10, A11, M12, M13 and M14)}	No modifications	Thank God, she has improved a lot. Nowadays, she can stand on her own; she takes a few steps; we see her progress. (M6)	In terms of speech, I have already been able to see some results. She already says “mommy”, “daddy”, “here”, “oops”, some monosyllabic things. (M6)
Capacity for developing activities^(M1)	Improvement	C1 falls all the time and I’m afraid he’ll fall because he keeps hitting his face on the ground and I’m afraid he’ll hit his head. (M1)	He doesn’t fall as much as before. His feet were a little more turned inward, then they fixed it and he stopped falling. (M1)

Illness view
Family perspective	Pattern of perspective variation	Empirical data
Family perspective	Pattern of perspective variation	Pre-pandemic context	Trans-pandemic context
Perception of the severity of children’s clinical condition, associated with the potential risk of worsening due to COVID-19^{(M1, M2, M3, M5, M6, M8, M9, M14, M16, M17, M18, M21, M22 and M24)}	Worsening	C24 has a serious congenital heart defect, right? So, we’re following up properly. (M24)	If he catches the virus, it could worsen his heart condition even more; I don’t know if he’ll survive. (M24)

Management mindset
Family perspective	Pattern of perspective variation	Empirical data
Family perspective	Pattern of perspective variation	COVID-19 trans-pandemic context
Difficulty regarding the interruption of health and education services^{(M2, M5, M6, M7, M10, A11, M16 and M22)}	Worsening	It’s been like this: a rush, right? More stressful, because there’s no school, right? So, they stay home more anxious. (M7) We had to stop the swimming lessons. The hospital’s outpatient clinic didn’t have appointments. Here at APAE, the doctor also stopped, so, well, the care became difficult. (M22)
Difficulty due to maintaining rehabilitation and education activities at home^{(M2, M5, M6, M7, M10, A11, M16 and M22)}	Worsening	There aren’t in-person appointments happening. So, in this case, there’s online physiotherapy, right? They call, they do video calls, and in this case, I’m the one who has to do physiotherapy. (M10) The school activities come to me to teach. It’s not easy, you know? (C6)
Difficulty due to increased hygiene measures^{(M1, M3, M8, M9, M23 and M24)}	Worsening	I’m being more careful with C1. I don’t go out as much as before, I’m always washing his little hands; when I go out, I get home and change his clothes right away, I give him a bath. My care for him has doubled. (M1) I wipe everything down every day with bleach to disinfect. I spray alcohol on C8’s things. Now, during the pandemic, it’s very difficult to maintain her care and these precautions, but I’m maintaining them all. (M8)
Difficulty due to children and family being confined to the home^{(M1, M3, M7, M10, M13, M14, M17 and M19)}	Worsening	Being stuck at home more is bad, isn’t it? We end up getting more stressed. We can’t go out much, we can’t have freedom. (M1) Ah, there was a change, right? Because we all stayed inside the house, especially for me. For me, it’s very tiring and stressful. (M13)
Ease of maintaining therapies during the pandemic^{(M1, M2, M3, M6. M7, M9, A11)}	No modifications	Thank God, equine therapy is working. It’s the only activity allowed in my city. (M3) They receive follow-up care at APAE, and it’s been very important for them now during the pandemic. (M7)
Ease of access for children through the health plan^{(M6 and A11)}	No modifications	C6 has had the health plan for two years now. The doctor comes to the house, and physiotherapy too, so there’s no need to take her out. (M6) Even with the pandemic, the appointments continued. That was great. Having a plan makes a difference at times like these, doesn’t it? (A11)
Ease due to the possibility of dedicating oneself to care^{(M1, M8)}	No modifications	Pre-pandemic context	Trans-pandemic context
	No modifications	Yeah, no problem. Since I don’t work, I stay home because of C1. (M1)	I take care of him, which makes things much easier, so I do everything I can for him. (M1)
Difficulty in managing multiple health appointments^(M13)	No modifications	I have to organize my schedule around C13’s therapies. It’s very demanding for me. (M13)	The only problem is getting her medical care during this pandemic. Without it, her development will be completely delayed. (M13)
Difficulty in managing multiple health appointments^(M1)	Improvement	It’s a lot of doctors, you know, a lot of little things, and I, as a first-time mother, find it more complicated [...] he goes to many professionals. (M1)	I’m always taking him to the doctor. The good thing is that it’s nothing like it was before. I take him mostly for routine checkups and when his bronchitis flares up. (M1)

Parental mutuality
Family perspective	Pattern of perspective variation	Empirical data
Family perspective	Pattern of perspective variation	Pre-pandemic context	Trans-pandemic context
Union and sharing of caregiving tasks^{(M2, M3, F4, M6, M7, M10, M13, F15, C20, C21)}	No modifications	What I have most in common with my husband is our concern for the C3. In this respect, we are very close and similar. (M3)	Thank God, we have no disagreements. We are very united in taking care of C3. (M3)
Dialogue and shared decisions^{(M3, M7, F15, M16 and M24)}	No modifications	We maintain a dialogue about everything involving C16 and discuss all decisions. (M16)	My husband and I talk a lot, we make decisions together, even about not receiving visitors during the pandemic. (M16)
Lack of dialogue and differing perspectives on care^(M14)	No modifications	My husband doesn’t help. We don’t talk about it either, I end up letting it go. We already have enough problems. (M14)	My husband doesn’t worry. I can’t even ask him for help. I can’t talk to him about it, so I handle things myself. (M14)
Perspective of normality regarding children^{(M3 and M23)}	No modifications	My husband and I think alike. We have to treat C23’s life like any other normal child. (M23)	We treat her the same as our other child. For us, she’s a normal child. (M23)
Non-acceptance of children’s health conditions^(M8)	No modifications	My husband doesn’t accept it at all. I don’t accept it either, but we accept that it was God who allowed this. (M8)	My husband has also been feeling a bit overwhelmed, just like me, because it’s a difficult thing to accept... we don’t accept it. (M8)
A similar perspective on children’s education^{(M7, F15 and M18)}	No modifications	My vision regarding his education for the future is the same as my husband’s. (M18)	We value his upbringing very much, we teach him to be polite every day. (M18)
Love^{(M8 and M10)}	No modifications	Her father and I both have a lot of affection for her. We love her very much. (M10)	We have a lot of love and, therefore, we take very good care of her together. (M10)
Coexistence and strengthening of family ties^{(F4 and M7)}	Improvement	Trans-pandemic context
Coexistence and strengthening of family ties^{(F4 and M7)}	Improvement	We had more dialogue and companionship at home. The pandemic brought us much closer together because of the increased time spent together. (F4) The pandemic gave us the opportunity to be more united, together, talk more about things and take care of C7. (M7)