Challenges of Parents With Children With Rare Diseases in Portugal

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.