Supervisors info:
Κολαΐτης Γεράσιμος, Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ, Επιβλέπων
Χαρμανδάρη Ευαγγελία, Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Χριστογιώργος Στυλιανός, Αναπληρωτής Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ
Summary:
Introduction: In an ever-evolving society there are psychosocial events that are capable of altering family structure and cohesion radically. One is such event the diagnosis of a child with congenital heart disease (CHD), in which parents are called upon to cope with the difficulties of the lack of specific reasoning for initiation, the reduced state contribution to resources, the financial requirements of the disease, individual and family pressures, social stigmatization and a multitude of problems it evokes. The family takes on the responsibility of the children’s upbringing, adjustment, emotional burden and various other aspects of a child's long-term restrictive state from diagnosis to medical intervention. As a consequence, the influence on family members tends to be multifactorial, as they are affected physically, mentally and financially, taking into account the level of functionality, the degree of self-efficacy, social support, adjustment and the severity of the disease.
Aim: The aim of this study is to investigate the psychosocial needs and resilience of the children’s parents with congenital heart disease. Additionally, another goal is the assessment of the strengths and difficulties of adolescents between the ages of 11 and 17 who have some form of heart disease.
Method: Parents of children are involved In this study with heart disease (N = 61), as well as adolescents aged 11-17 years with heart disease (N = 31), who are being cured at the "Agia Sofia" Children's Hospital or have been cured in the past and continue to be attended at the outpatient clinics of the pediatric hospital at the time the survey took place. Α convenience sampling method was used to distribute following questionnaires to parents Demographic Questionnaire and Short Medical History Questionnaire, Global Psychotrauma Screen (GPS), Resilience Evaluation Scale (RES), General Health Questionaire (GHQ), Strengths and Difficulties Questionnaire for Parents (SDQ) and Parenting Stress Index (PSI). In addition, Strengths and Difficulties Questionnaire for Adolescents (SDQ) was distributed to adolescents.
Results: Significant changes were not detected in the quality of the relationship between the partners (parents) after the onset of the disease in the child / adolescent. Parents showed more physical symptoms (p=0.043), increased rates of anxiety (p = 0.017) and depression (p=0.05) before surgery. Additionally, there were no significant differences in the attitude of the family and the friendly environment before and after the onset of the disease. In contrast, the relationship that the partners developed the self-efficacy (p=0.044) and the overall resilience of the parents (p=0.022).
Furthermore, parents were found to have symptoms of post-traumatic stress related to their children's heart disease, even if they had experienced a traumatic event in the past, as well as they are not related to the parent's gender with higher stress rates. Regarding children / adolescents, the findings did not show an increased rate of emotional disorders depending on the sex of the child / adolescent (p>0.05).
Conclusions: Parents of children and adolescents with heart disease have increased levels of stress and generally worse health in condition of future surgery. Also, their mental resilience is affected more by the parents' relationship with each other rather than the relationship with the family or friendly environment. Finally, there is a need for further research of pediatric patients with heart disease and their parents as there is a great burden on the psychosocial level.
Keywords:
Heart disease, Congenital heart disease, Mental health, Resilience, Parents, Children and adolescents
