Serious, degenerative or genetic diseases that are generally life threatening and can be debilitating as their quality of life is compromised due to lack of autonomy and the high level of pain and suffering experienced by the individual rare disease patient and his family.
Published in Chapter:
Challenges of Parents With Children With Rare Diseases in Portugal: A Relational Perspective
Beatriz Moreira Silva Santos (University of Trás-Os-Montes and Alto Douro, Portugal), Cátia Filipa da Silva Ferreira (University of Trás-Os-Montes and Alto Douro, Portugal), and Catarina Pinheiro Mota (University of Trás-Os-Montes and Alto Douro, Portugal & Center for Psychology, University of Porto. R, Alfredo Allen, Portugal)
Copyright: © 2020
|Pages: 24
DOI: 10.4018/978-1-7998-2088-8.ch008
Abstract
This chapter makes known the reality of Portuguese families with children diagnosed with a rare disease. The parenting, romantic attachment, coping and emotional regulation strategies, resilience, and personality characteristics of parental figures are the main focus of research carried out in Portugal. In this research participated 160 parental figures (99 mothers and 61 fathers) between 22 and 81 years old. It was found that the existence of a child with a rare disease in the family can give rise to a set of disparate feelings, where the parental figures have to reorganize themselves internally and externally to respond to the needs of the child. It is important to develop intervention programs that address the needs of the parental figures underlying the act of caring.