Epilepsja jako niszcząca choroba - metafory osób chorych na epilepsję. Badanie jakościowe
"Destructive epilepsy", epilepsy metaphors of people with epilepsy: A qualitative study
W skrócie
Badacze pytali 146 dorosłych pacjentów z epilepsją, jak opisują swoją chorobę, używając porównań i metafor. Pacjenci najczęściej porównywali epilepsję do czegoś niszczącego i nieprzewidywalnego, jak trzęsienie ziemi lub uderzenie pioruna. Wyniki pokazują, że epilepsja to nie tylko fizyczna choroba, ale ma duży wpływ na psychikę i życie społeczne pacjentów, dlatego zrozumienie ich doświadczeń może pomóc lekarzom i pielęgniarkom lepiej wspierać chorych.
Oryginalny abstract (angielski)
BACKGROUND: Epilepsy, a complex neurological disease characterized by recurrent, unprovoked seizures, affects millions worldwide, significantly impacting individuals' physical health, psychological well-being, and social integration. OBJECTIVE: This study was conducted usingametaphor analysis technique based on a phenomenological design, a qualitative research method, to determine the mental images of epilepsy among adults diagnosed with the disease. METHODS: The study was conducted between November 2022 and December 2023 at a university hospital in northeastern Türkiye with 146 adultpatients with epilepsy(PWE) who met the inclusion criteria. Data were collected using a structured written metaphor form under the guidance of the researcher. This qualitative study was reported with reference to the COREQ reporting standards, where applicable. RESULTS: The average age of the PWE was 33.61 ± 11.35 years, and the duration of epilepsy was 10.63 ± 9.75 years, with 54.1 %of the participantsbeing female. Inthisstudy, metaphors reflecting the PWE' perceptions of epilepsy were groupedintoeight main themes. The main themes were: i) destructive, ii)feelingdisconnected, iii) alarming, iv) controlling, v)ambiguous, vi) life altering, vii)vulnerableandviii)companion epilepsy. The most frequently used metaphors by the participants were related to the main theme of "destructive" and were defined by metaphors emphasizing the unpredictable nature of the disease, such as "earthquake" or "lightning strike". CONCLUSIONS: Bycategorizing metaphors,this studysuggests that epilepsy is not merely a chronic physical disease but also reveals its psychosocial aspects and impact on individuals with epilepsy through their personal experiences. Metaphors are a powerful tool for understanding the inner world ofpatients with epilepsyand the emotional burdens that cannot be expressed in the clinic. The use of these metaphorical expressions by nurses and other healthcare professionals can facilitate more effective therapeutic communication with patients andhelpindividualize care.