Impacto psicosocial en los familiares de pacientes diagnosticados con fibrosis quística: Un estudio narrativo-exploratorio

Abstract

The present study aimed to understand, from the participants' own experience, the psychological impact of diagnosis and treatment on family members of patients with cystic fibrosis. The methodology used was qualitative, with a phenomenological design. Semi-structured interviews were used as an instrument to collect information and were conducted with 12 primary caregivers and 4 health personnel for data triangulation. Among the main emerging themes were the pre-, during-, and post-diagnosis experience; experience during treatment, concerning the primary associated emotions, among others; impact on human relationships, both in family members and peers, and the specific impact on parents; on academic performance due to school absenteeism and the primary sources of support being family and religion. In general, relatives show a positive attitude towards the disease through selective attention to aspects such as access to treatment and the probability of improvement. In addition, this life experience strengthens their faith and their beliefs in a higher being who is in control of all things. Similarly, they tend to have positive illusions based on hope, which allows them to reduce the experience of fear and negative repercussions.