Introduction:

Pediatric chronic kidney disease (CKD) is a serious health problem that affects the life of the adults and generates psychosocial impact on the family network.

Objective:

To reveal the representations and perspectives of primary caregivers of children with chronic kidney disease.

Methodology:

Study with phenomenological design administered in 9 informants, collection of information through in-depth interviews, category analysis, triangulation by researcher, safeguarding the rigorous criteria of Guba and Lincoln, and respect for the ethical principles of Ezekiel Emanuel.

Results:

The meta categories “living the disease”, “highly demanding disease” and “support networks present” emerged.

Discussion:

Coping with the disease is threatened by physical fatigue, uncertainty, and alteration of support within and outside the family structure. A similar result is found in the base study. The management of the child is carried out by the mother in almost all the activities associated with its treatment.

Conclusions:

Women provide care invisibly and continuously. It is necessary to make it visible as a social problem, to establish policies with a gender perspective that determine corrections of inequities that cultural stereotypes provide, as well as to make visible the need for greater nursing intervention as support for informal care.

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