Construção e validação de tecnologia educacional impressa para cuidadores informais de crianças e adolescentes com paralisia cerebral

Abstract

Cerebral palsy is a condition that affects around two in every 1,000 live births worldwide, with a higher rate in middle- and low-income countries. Faced with the diagnosis, the family goes through a sequence of fairly predictable stages: impact, denial, mourning and adaptation. The needs of children/adolescents with cerebral palsy give rise to the figure of the caregiver who, within the family environment, is called an informal caregiver because they are not paid. Because the demands of caring are intense and continuous, sometimes the caregiver's quality of life can be impaired, impacting on their physical and mental health and on their social and family relationships. Educational technologies can be used by health teams as a way of mitigating these impacts, as they can offer knowledge that changes practices and attitudes. This research was divided into two studies. Study 1, an integrative literature review, aimed to identify and describe educational technologies for family caregivers of children and adolescents with motor disabilities. A search was carried out in the BVS, LILACS, MEDLINE, PubMed and SciELO databases, from 2011 to 2021, in Portuguese, English and Spanish, using the descriptors caregivers, educational technology, disability, physical disability, handicap and health education. Twenty-five studies were selected, six from 2020; 15 produced in Brazil; 13 found on SciELO. Booklets were the most common educational technology found, being present in eight studies, followed by the formation of groups of caregivers, in seven studies; nurses were the most frequent professional applicators/creators (eight studies); the construction process appeared in nine studies and the validation process in only four. The aim of Study 2 was to build and validate a printed educational technology booklet for informal caregivers of children and adolescents with cerebral palsy. It was a participatory project, with 10 caregivers taking part in the booklet's construction stage, and they were co-participants in versions 2 and 3 of the booklet. Content and appearance validation was carried out by 24 judges, 11 of whom were health specialists, six technical judges and seven informal caregivers of children/adolescents with cerebral palsy. They analysed objectives, structure, presentation, relevance, language, motivation, layout, typography, illustrations, organization, writing style and appearance. They obtained 0.98% content validation and 0.96% appearance validation. The final version of the booklet was made up of the following domains: Cerebral Palsy, Care Team, Caregiver's Physical Health, Caregiver's Mental Health and Family and Social Relationships.