Authors
Abstract(s)
Este estudo de carácter descritivo exploratório visa compreender as necessidades e dificuldades
emocionais dos pais cujo (a) filho (a) vivencie doença que exige atenção paliativa pediátrica. Pretende ainda
explorar quais as necessidades e dificuldades emocionais dos irmãos da criança doente na perspectiva dos
pais. Foi utilizada uma metodologia mista, com um design de triangulação, um tipo de metodologia na qual
são recolhidos dados diferentes mas complementares acerca da temática em estudo segundo uma
abordagem que engloba análise qualitativa e quantitativa. Aplicou-se a Emotional Asessment Scale – EAS
(Carlson et al., 1989; Moura-Ramos, 2006) para avaliar a reactividade emocional dos pais e um questionário
de auto-preenchimento para avaliar as estratégias implementadas no sentido da manutenção da adaptação
psicológica, procurando perceber se existem diferenças entre mãe e pai a este nível. De forma concorrente,
foi utilizado um instrumento qualitativo, uma entrevista semi-estruturada, que permitiu explorar as
experiências subjectivas dos pais. Foram entrevistados 3 casais, 3 pais e 12 mães e responderam à EAS 35
pais e mães e ao questionário 33 mães e pais. Para o tratamento de dados foi utilizada a análise de
conteúdo e estatística descritiva e inferencial. Apesar da reduzida dimensão da amostra, concluiu-se que
não existem diferenças significativas quanto à reactividade emocional entre pais e mães apesar de existirem
diferenças na verbalização das experiências emocionais. Foram encontradas 7 categorias fundamentais no
que diz respeito às dificuldades emocionais apresentadas pelas figuras parentais, nomeadamente
relacionadas com a gestão emocional do impacto do processo de doença, com a gestão das alterações
impostas às dinâmicas familiares e com as questões da comunicação. Foram encontradas 13 categorias
fundamentais ao nível das necessidades emocionais verbalizadas pelos pais e mães, sobretudo
relacionadas com a activação das redes de suporte, procura de informação e com a procura do significado
do processo de doença. No que diz respeito aos irmãos da criança doente, os pais consideram importante
englobá-los na prestação de cuidados à criança, sendo que as suas maiores dificuldades prendem-se com
o afastamento relacional entre os diferentes elementos da família bem como a vivência de emoções e
sentimentos negativos. Foram ainda encontrados resultados noutras áreas relacionadas com o tema em
estudo com implicações relevantes para a intervenção psicológica e organização dos serviços, bem como
conclusões associadas às características sócio-demográficas da amostra e às características dos processos
de doença, relevantes para a explicação da questão central em estudo
This is a descriptive explorative study that tries to understand the parents emotional needs and difficulties, whose child has a life-limiting illness. It also seeks to explore the parents perspectives of the siblings’ emotional needs and difficulties. A mixed methods research was used, with a triangulation design, a type of design in which different but complementary data will be collected on the same topic. The Emotional Assessment Scale (Carson et al., 1989; Moura-Ramos, 2006) was applied to access the parents emotional reactivity as well as a self-fulfilment questionnaire to access the strategies applied by them in order to maintain their psychological adaptation, with a purpose to understand if there are parental differences at this topic. At the same time, it was applied a qualitative semi-structured interview that allowed to explore the parental subjective experiences. We interviewed 3 couples, 3 fathers and 12 mothers; 35 parents answered to the EAS and 33 parents answered the questionnaire. For the data analysis it was used content analysis and descriptive inferential statistics. Although the sample was small, it was concluded that there are no significant differences between fathers and mothers’ emotional reactivity, although there are differences associated to the verbalization of such emotional experiences. Seven fundamental categories were found concerning the parents emotional difficulties related to the emotional management of the illness process impact, with the management of the imposed family dynamics changes and also with communication problems. Thirteen fundamental categories were also found related to parents emotional needs, mainly associated with the seeking of social support, information as well as the meaning of the illness process. Concerning to the siblings, parents consider important embodying them in the child’s care, as their biggest difficulties are related to being distant from their relatives and the experience of negative emotions and feeling. Results were also found in other areas related with this topic with relevant implication to the psychological intervention and to services organization as well as conclusions with relevance to the explanation of the main question of this study, associated to this sample social-demographic and illness processes characteristics.
This is a descriptive explorative study that tries to understand the parents emotional needs and difficulties, whose child has a life-limiting illness. It also seeks to explore the parents perspectives of the siblings’ emotional needs and difficulties. A mixed methods research was used, with a triangulation design, a type of design in which different but complementary data will be collected on the same topic. The Emotional Assessment Scale (Carson et al., 1989; Moura-Ramos, 2006) was applied to access the parents emotional reactivity as well as a self-fulfilment questionnaire to access the strategies applied by them in order to maintain their psychological adaptation, with a purpose to understand if there are parental differences at this topic. At the same time, it was applied a qualitative semi-structured interview that allowed to explore the parental subjective experiences. We interviewed 3 couples, 3 fathers and 12 mothers; 35 parents answered to the EAS and 33 parents answered the questionnaire. For the data analysis it was used content analysis and descriptive inferential statistics. Although the sample was small, it was concluded that there are no significant differences between fathers and mothers’ emotional reactivity, although there are differences associated to the verbalization of such emotional experiences. Seven fundamental categories were found concerning the parents emotional difficulties related to the emotional management of the illness process impact, with the management of the imposed family dynamics changes and also with communication problems. Thirteen fundamental categories were also found related to parents emotional needs, mainly associated with the seeking of social support, information as well as the meaning of the illness process. Concerning to the siblings, parents consider important embodying them in the child’s care, as their biggest difficulties are related to being distant from their relatives and the experience of negative emotions and feeling. Results were also found in other areas related with this topic with relevant implication to the psychological intervention and to services organization as well as conclusions with relevance to the explanation of the main question of this study, associated to this sample social-demographic and illness processes characteristics.