The profile of caregivers to pediatric patients with cystic fibrosis/O perfil dos cuidadores de pacientes pediatricos com fibrose cistica

• Published in: Ciência & saude coletiva 2018-05, Vol.23 (5), p.1451
• Main Authors: Alves, Stella Pegoraro, Bueno, Denise
• Format: Article
• Language: Portuguese
• ISSN: 1413-8123
• DOI: 10.1590/1413-81232018235.18222016

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. Key words Cystic fibrosis, Chronic disease, Child, Caregivers, Pharmaceutical services O objetivo desse estudo foi identificar o perfil do cuidador principal de pacientes pediatricos com Fibrose Cistica (FC). Estudo transversal, descritivo e prospectivo, no qual foi realizado, durante consulta farmaceutica, entrevista com cuidadores de pacientes fibrocisticos acompanhados em um centro de referencia de um Hospital Universitario do Sul do Brasil. Foram obtidas informacoes gerais sobre os cuidadores, sobre o entendimento da doenca, os medicamentos em uso do paciente e a dinamica do tratamento em domicilio e na escola. Foram entrevistados 75 cuidadores. Maioria do sexo feminino, com media de idade de 37,3 anos, mae do paciente e que nao trabalhava fora do domicilio. Sessenta e um cuidadores referiram dificuldade de aquisicao de medicamentos e as associacoes de apoio ao paciente foram a principal alternativa para a nao interrupcao do tratamento. A sobrecarga do processo do cuidar que recai em um unico cuidador, gerando impacto social e economico e alterando o cotidiano familiar foi outro dado observado. Foi constatada a necessidade da intervencao de equipe multidisciplinar capacitada na identificacao das dificuldades apresentadas, investindo nas relacoes inter