The profile of caregivers to pediatric patients with cystic fibrosis

Ciência & saúde coletiva
Stella Pegoraro Alves, Denise Bueno

Abstract

The scope of this study was to establish the profile of caregivers of pediatric patients diagnosed with Cystic Fibrosis (CF). It was a cross-sectional, descriptive and prospective study in which the caregivers of fibrocystic patients were interviewed during pharmaceutical consultation in a reference center of a University Hospital in southern Brazil. General information was obtained about the caregivers and about their understanding of the disease, drug consumption and dynamics of treatment at home and at school. Seventy-five caregivers were interviewed. Most of them were female, 37.3 years old on average, mothers of the patients who did not work outside the home. Seventy-one caregivers declared difficulties in drug acquisition and patient support associations were highlighted as the main alternative to avoid the interruption of treatment. Another fact observed was the overload of the caregiving process on the shoulders of only one caregiver resulting in social and economic impacts and changes to the family's daily routine. This fact emphasizes the need of intervention by a qualified multidisciplinary team to identify and alleviate difficulties, investing in interpersonal relations and administering care.

References

Dec 17, 2003·Jornal de pediatria·Jose Dirceu RibeiroAntonio Fernando Ribeiro
Sep 13, 2006·Revista latino-americana de enfermagem·Tainá Maués Pelúcio Pizzignacco, Regina Aparecida Garcia de Lima
May 1, 2009·Lancet·Brian P O'Sullivan, Steven D Freedman
Jun 17, 2014·Pharmacology & Therapeutics·Scott C BellMargarida D Amaral

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Citations

Oct 3, 2019·Ciência & saúde coletiva·Martha Cristina Nunes MoreiraMárcia Pinto
Feb 20, 2020·Revista brasileira de enfermagem·Yana Balduíno de AraújoJoão Agnaldo Nascimento
May 27, 2021·Revista gaúcha de enfermagem·Érika Leite da Silva CardosoJoão Agnaldo do Nascimento

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