Dados do Trabalho

Título

GETTING TO KNOW THE NEEDS OF CAREGIVERS OF CHILDREN AND ADOLESCENTS WITH EPILEPSY FOR THE DEVELOPMENT OF TECHNOLOGICAL TOOL.

Introdução

Epilepsy is a chronic disease characterized by the occurrence of recurrent non provoked epileptic seizures. This condition affects the quality of life of those affected as well as their caregivers’ not only by the disease itself but also because of comorbidity. It requires daily care and continuous use of anti seizure medication at specific times of the day.

Objetivo

To develop a technological tool to help the planning of the daily routine of children and adolescents with epilepsy

Métodos

This is a cross-sectional research. The data was collected remotely through Qualtrics platform. The participants had access to the informed consent form in advance of responding the questionnaire. The sample of participants was composed by caregivers of children ranging from 0-17 years old diagnosed with epilepsy, and the recruitment happened through social media and epilepsy outpatient clinics. The questionnaire was made out of 55 questions that approached the knowledge, perceptions and habits of the caregivers as to the daily basis of the child. There were also questions about the use of technologies that helped in the management of the disease.

Resultados

A total of 100 people accessed the questionnaire, from which only 46 answered it thoroughly. From the 46 respondents, 100% affirmed having the habit of using cell phones, 32,61% answered that the child they care for is on monotherapy and 56,52% reported that they use alarms to remember to give the medication. The orientation to record ictal events to help characterize seizures was given, by doctors, to 89,36% of the sample, yet 40% reported finding trouble keeping the recordings. Also, 66% of the respondents think they don’t have clear information about the child’s condition or treatment.

Conclusões

Epilepsy is a condition that interferes in physiological and social ways. Considering such impact in the quality of life of both patient and caregiver, it is believed that the development of an app that carries information about the disease and tools to organize the daily routine of these people will be of great value.

Palavras chave

:Epilepsy; App; Quality of life; Caregivers ; children;adolescents

Fonte de Fomento (se houver)

A aluna Clarissa Ferraz Rodrigues é bolsista de iniciação cientifica pelo programa BPA_PUCRS.

Declaração de conflito de interesses de TODOS os autores

Sem conflito de interesse a declarar