| Abstract | Totalna laringektomija je kirurški zahvat tijekom kojeg se u potpunosti odstrani larinks. Ovaj
zahvat nosi niz posljedica te se kvaliteta života operirane osobe značajno mijenja. Najteži psihički
i socijalni problem osoba s iskustvom laringektomije jest trajni gubitak glasnog govora te
promijenjeni način disanja, trajna traheostoma (otvor na vratu). Nakon operacije moraju učiti
disati, iskašljavati, gutati i govoriti. Uslijed ovakvog gubitka i nastalih promjena osobe s iskustvom
laringektomije su pod rizikom od stigmatizacije u društvu. Stigmatizirane osobe mogu kao
posljedicu imati pad samopoštovanja i svojevoljno povlačenje iz društvenog života. Cilj ovog
istraživanja bio je dobiti uvid u doživljaj stigme osoba s iskustvom laringektomije te članova
njihovih obitelji. U istraživanju je sudjelovalo ukupno 50 osoba: sudionici s iskustvom
laringektomije (N=22), njihovi partneri (N=16) i njihova djeca (N=12). Primijenjen je kvalitativni
pristup. Osobe s iskustvom laringektomije te njihovi članovi obitelji intervjuirani su tehnikom
polustrukturiranog intervjua, a prilikom obrade podataka korištena je tematska analiza. Rezultati
su pokazali da osobe s iskustvom laringektomije redovito doživljavaju stigmu okoline,
samostigmatizaciju te imaju pihičke posljedice stigme. Nakon laringektomije, sudionici su imali
iskustva izbjegavanja okoline, prijatelja i poslovnih kolega te neka neugodna iskustva s ljudima.
Većina tih iskustava proizlazi iz slabe informiranosti. Sudionicima najveći problem predstavlja
govor u društvu što uzrokuje socijalno povlačenje. Većina sudionika se manje druži i manje govore
u društvu. Neke od najčešće navođenih psihičkih posljedica koje osjećaju osobe s iskustvom
laringektomije su depresivnost, pad samopouzdanja te osjetljivost i iritabilnost. Istovremeno,
članovi obitelji osjećaju više razine zabrinutosti te osjetljivost i iritabilnost. Osobe s iskustvom
laringektomije i članovi njihovh obitelji imaju dosljedno viđenje stigme, bilo da je riječ o stigmi
okoline, samostigmatizaciji i povlačenju iz društva ili kada je riječ o psihičkim posljedicama. |
| Abstract (english) | Introduction: Total laryngectomy is a surgical procedure that removes the whole larynx. This
surgery can have serious impact on the person’s physical and psychological functionality, and their
general quality of life. The biggest challenge and most common issue for people who have
undergone a total laryngectomy is the permanent loss of their speech organ. Which results in an
altered speech, difficulties in communication and a changed way of breathing, permanent
tracheostomy (opening in the neck). After the operation, they have to learn to breathe, cough,
swallow and speak. Therefore, they often experience social and internalized stigma, and loss of
identity related to their condition. Stigmatized persons also experience some psychological
consequences, such as lack of self-confidence, social withdrawal, grief, and depression. In order
to prevent further stigmatization, it is important to understand how people who have undergone
this procedure experience stigma in their social environment. Furthermore, to get even deeper
understanding of the stigma surrounding laryngectomized persons, it is equally important to
understand the perception of stigma of their close family members, spouses and children.
Participants: There were 50 participants in this research, 22 persons who have undergone a total
laryngectomy, 16 of their spouses, and 12 of their children. All the participants were older than
18, and all of them participated voluntarily in this study. Laryngectomized persons were between
52 and 75 years old. In order to participate in the study, persons needed to satisfy certain
conditions. Those conditions included that: they underwent a total laryngectomy more than a year
ago, their recovery is completed, their health is currently stable, and they have successfully
mastered one of the three types of replacement, alaryngeal voice/speech.
Data collection: Qualitative approach was used in this study. Data was collected by semistructured interviews with participants that gave informed consent to participate. Participants and
their family members were interviewed individually, usually when attending their regular medical
follow-up. Some of the family members were contacted by phone, and asked if they were willing
to participate in the study. The first part of the interview mostly focused on the perception of social
stigma they experienced due to their condition, while the second part included questions about
internalized stigma. All the interviews were recorded, transcribed, and later analysed by thematic
analysis.
Results: The results showed that persons who have undergone a total laryngectomy perceive
stigma in three main ways: stigma of their social environment, internalized stigma (or self-stigma),
and psychological consequences. Most of the participants experienced some form of stigma in
their social environment. They usually experienced stigmatization in different forms from their
wider social circle, from their colleagues, friends, and sometimes even from their families. They
experienced avoidance, lack of understanding, and some unpleasant moments in their social
interactions. However, most of laryngectomized persons attribute those unpleasant social
situations to lack of knowledge and information about total laryngectomy in the general public
(including their friends and colleagues). They have experienced significant improvement in social
interactions, after people around them learnt more about their condition and got used to it. When
it comes to internalized stigma, most of the laryngectomized persons report some form of social
withdrawal after surgery. They usually socialize less than before, avoid speaking in public
(especially in a large group of people), and sometimes give up work and retire. The most common
problem that participants mentioned was speaking in public. They mostly cannot speak as loudly
as other people in the group, and need some time to form a full sentence. Most of their social
surroundings do not understand that, which creates difficulties for them to participate in
conversations, especially in larger groups. People who experienced laryngectomy, also
experienced some psychological consequences such as depression, lack of confidence (especially
in social situations), and increased irritability. Family members perceive stigma in a similar way
as their laryngectomized spouses or parents, and after the surgery often feel more worried and
stressed than before. All participants believe that they would benefit from psychological support
after laryngectomy, and at the same time, express the need of raising awareness and informing the
public about this procedure.
Conclusion: Besides physical and functional problems, people who have undergone a total
laryngectomy also experience a significant level of stigmatization in their social environment.
They mostly believe that the reason behind the stigmatization lies in insufficient knowledge and
information about laryngectomy in general public. Colleagues, friends, and families show better
acceptance and support after learning more about laryngectomized people. However, total
laryngectomy and social stigma that follows it, often result in self-stigmatization, and
psychological consequences for laryngectomized people and their families.
Raising awareness and including formal psychological support in their treatment, could improve
psychological wellbeing and the quality of life of laryngectomized people and their families. |
