Challenges of Parents With Children With Rare Diseases in Portugal: A Relational Perspective

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
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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.
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Experiences Of Parents With Children With Rare Diseases

Taking care of a child involves a set of reorganizations in the roles of the members of the family, being necessary to offer an answer to the physical, affective and psychic needs of the child (Cruz, 2013). The birth of a child is a significant milestone in the dynamics of a family, where the parents build fantasies and expectations regarding the child (Soares, Araújo, & Bellato, 2016). The unexpected emergence of a rare disease in the child may trigger in the parental figures a grief process of the idealized child, developing feelings of anguish, hopelessness, impotence and doubt regarding the future of the family’s dynamic and the idea of dealing with a child with special needs (Góes, 2006; Lucca & Petean, 2016; Milbrath, Motta, Gabatz, & Freitag, 2017). Many of the emotional difficulties experienced by parents of children with rare diseases are related to the difficulties of getting the correct diagnosis and finding information about the disease (Dellve et al., 2006). The fear of an uncertain or time-consuming diagnosis, the limited access to health information and resources, and the complexity of the access to support groups, are the main difficulties of the parental figures (Pelentsov et al., 2016a).

Key Terms in this Chapter

Rare Diseases: 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.

Coping: Set of strategies that individuals use in order to adapt and manage certain life circumstances, perceived as adverse.

Personality: Set of patterns of behaviors, thoughts, feelings and attitudes that are inherent in an individual and that tend to vary with each individual, making the subject a unique organism.

Attachment: Concept developed by John Bowlby that explains the innate disposition of the human being to establish affective bonds and close relationships with the primordial figures.

Parenting: Set of tasks inherent in parenting to promote the development of their children as fully as possible, using resources within and outside the family.

Emotional Regulation: Processes, intrinsic and extrinsic, through which individuals exert an effect on experiencing and expressing emotions in order to achieve emotional stability in an adverse situation.

Resilience: Set of adaptive processes that promote encouragement, resistance and empowerment in the face of traumatic and / or stressful situations.

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