Laryngectomized patients caregivers' life experience: A phenomenological study

Background: Laryngectomized patients often depend on their caregivers who have a centraland difficult role in supporting them dealingwith financial, social, and relationalissues. In fact, they feel very responsible and committed, especially considering the timedevoted to take care of their beloved. Besides, providing care induces caregivers high stresslevels, emotional distress, anxiety and the fear of cancer recurrence or progress. Few studiesinvestigated laryngectomized patients caregivers’ life experience during both the wholecourse of illness and at the end of the treatment. Therefore, the purpose of our study wasto explore, through a phenomenological approach, the lived-experience of primary familycaregivers of laryngectomized patients undergoing radical surgery.Methods: Qualitative semi-structured and audiotaped interviews were held with 12 laryngectomizedpatients’ primary family caregivers. Data were analysed using thedescriptive phenomenological approach outlined by Colaizzi.Results: Three key themes emerged: the caregivers lived experience of illness; thechange of caregivers’ daily life and how they support their sick beloved. The experienceof caregivers’ lived relations changes from being a family member to a supportive carer,and the illness of their beloved negatively affects their psychological lived experience.Their perception of time and Quality of Life change as their perception of the futurebecomes uncertain. Finally, they feel guilty mainly because of the limited amount oftime they can devote to their beloved.Conclusions: The study findings allowed to understand in depth how the presence of alaryngectomized person in the family may affect the life of the caregiver, even after thetreatment phase. This suggests the need for healthcare professionals to support caregiversthroughout the whole care journey and especially in dealing with the perceptionof time during the diagnosis and care phases. Further research should be conducted onfactors contributing to time perception alteration and possible interventions to supportcaregivers to cope with it.