Parentalidade e atenção paliativa pediátrica

: necessidades e dificuldades emocionais dos pais e dos irmãos da criança doente

Abstract

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.

Date of Award	Apr 2012
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Filipe Nuno Alves dos Santos Almeida (Supervisor) & Susana Novias de Almeida (Co-Supervisor)