The power of informal cancer caregivers' writings

Abstract

Background: Cancer is a disease that disrupts not only the patient’s life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs’ still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the IRCCS CRO of Aviano organized, and understand the themes that emerged from their texts and hence, the power of expressive writing.

Materials and Methods: A qualitative study was carried out on literary texts using Mishler’s three levels of narrative analysis: Thematic (to detect themes and sub-themes); structural (to support the thematic level) and performative (to understand the narratives’ meaning). In addition, the narratives were classified based on Kleinman and Frank’s models. A particular focus was placed on the narratives’ language to identify figures of speech, e.g., metaphors related to cancer.

Results: Seven main themes emerged from the 40 stories’ thematic analysis: Perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC’s role; encounter with death, and strength of memory. The ICs’ stories also highlighted the strengths and weaknesses of the patient’s clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance, but also for the healthcare organization, above all because they serve a relational role as a “bridge” between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and sub-themes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.