Family perspective on caring for children with chronic conditions in the pre- and trans-pandemic contexts of COVID-19.
Nayara Luiza Henriques, Maísa Mara Lopes Macêdo Breves, Melissa Joice de Abreu Felizardo and 3 others
PMID 42497413WHAT IT FOUND
Caregivers of children with chronic conditions shifted from emphasizing children's strengths to seeing them as vulnerable during the pandemic.
They intensified hygiene, managed interrupted therapies at home, and most kept shared decision-making.
Key findings
01Most families emphasized children's strengths before the pandemic, but during the pandemic they focused more on vulnerabilities, and worsening patterns were most frequent.
02Families reported that interrupted rehabilitation and educational services made them take these activities at home, and this worsened their care management perspective.
03Parental mutuality did not worsen, and most families showed alignment in decision-making and caregiving.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was intentional and non-probabilistic, and the final analysis included 24 of the 53 caregivers who completed the first stage. Most caregivers were mothers, and participants came from two hospitals in southeastern Brazil, so views may not apply to other family structures, settings, or countries. Trans-pandemic data were collected during a period of high uncertainty, strict restrictions, and no immunization, which may have shaped perceptions. The paper reports family perspectives, not measured child health outcomes or treatment effects.
Declared interests
Financial support came from CAPES (Funding Code 001), CNPq (Funding Code 428929/2018-4), and FAPEMIG (Funding Code 25.960/01).
The easy way to misread this
Do not conclude that the pandemic worsened children's health or that family home care was sufficient to replace services. The study reports caregivers' perceptions from 24 caregivers in Brazil, and the authors state that family care should complement, not substitute, specialized services.