Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Rare diseases are chronic and sometimes life-threatening conditions which differ from others due to less definite identity and more difficult clinical management. These peculiar features may hinder the parental adaptational process. The study aimed to compare the emotional burden and coping strategi...

Full description

Saved in:
Bibliographic Details
Published in:Journal of child and family studies 2015-02, Vol.24 (2), p.514-522
Main Authors: Picci, Rocco Luigi, Oliva, Francesco, Trivelli, Federica, Carezana, Claudio, Zuffranieri, Marco, Ostacoli, Luca, Furlan, Pier Maria, Lala, Roberto
Format: Article
Language:English
Subjects:
Adaptation
Anxiety
Behavioral Science and Psychology
Child and School Psychology
Childrens health
Control Groups
Coping
Correlation
Depression (Psychology)
Disease
Diseases
Emotions
Fathers
Gender Differences
Longitudinal Studies
Mothers
Original Paper
Parents
Parents & parenting
Physicians
Psychology
Quality of life
Rare diseases
Social Sciences
Sociology
Survival strategy
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Rare diseases are chronic and sometimes life-threatening conditions which differ from others due to less definite identity and more difficult clinical management. These peculiar features may hinder the parental adaptational process. The study aimed to compare the emotional burden and coping strategies of parents of children with rare diseases (CRD) with those of parents of children with chronic diseases (CCD). Quality of life, anxiety, depression, and mood states of 55 parents of CRD and of 56 parents of CCD were assessed by specific validated assessment tools. Parametric and non-parametric tests were used for multiple comparisons. Bivariate correlations were employed to explore the relationship between coping and emotional burden. Parents of CRD were more anxious, more confused–bewildered, and less active–vigorous than those of CCD ( p  
ISSN:1062-1024
1573-2843
DOI:10.1007/s10826-013-9864-5