Dados do Trabalho

Título

Aspects of the quality of life of families caring for patients with refractory epilepsy

Resumo

Introduction: Adaptive family resources such as communication, dominance, social support and financial well-being are associated with good social adaptability in patients with epilepsy. However, to date few studies were carried out to assess the impact of the presence of a patient on the functioning of the family. In the case of refractory epilepsies, the impact is even more significant, it is a stressful process which requires emotional mastery, physical integrity, as well as time, dedication, and financial resources. Objective: To assess the quality of life of family members who care for children with refractory epilepsy. In addition, to present the characteristics of the family's social, economic and emotional conditions, limitations, compromised by refractory epilepsy, evaluating the expectations, anxieties, and fears of the parents in relation to the risks of hospitalization, death and regarding the academic and professional future of the child. Method: Descriptive study with a qualitative approach carried out remotely with the caregivers of children/adolescents with refractory epilepsy, who are followed up in a specialized outpatient clinic of a University Hospital in the Federal District. For data collection, a semi-structured form was used and an individual interview was carried out. Data collection was carried out through telephone contact. Results: Four families participated in the study, aged between 20 and 42 years. In this study, it was found that the children and adolescents participating in this study perform most of their daily activities with the help of their family members, thus requiring greater support and dedication from their caregivers. In addition, it was revealed that family members feel partially satisfied with their quality of life, this is due to several factors such as: lack of help from others to manage the child/adolescent, insufficient family income, collection, debt, overload, family conflicts, impact on marital life, feelings of guilt and unemployment, which cause anxiety, hopelessness and depression in family members. Conclusion: Caring for people with chronic neurological disorders has a negative impact on the family structure, causing psychological stress due to the need for adaptations that are not always achieved. In this way, care must be analyzed, not only from the perspective of the sick child, but extended to the entire family nucleus.