The power of informal cancer caregivers' writings: results from a thematic and narrative analysis (2021)
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The power of informal cancer caregivers' writings: results from a thematic and narrative analysis (2021)
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Il cancro è una malattia che sconvolge non solo la vita del paziente, ma anche quella dell'intera famiglia, da una prospettiva di cura, organizzativa ed emotiva. I pazienti condividono frequentemente la loro esperienza di malattia con il loro caregiver informale (IC), un partner, figlio/ figlia, amico, volontario o qualsiasi altra persona della famiglia o della rete sociale che si offre di sostenerli durante il loro viaggio clinico. Lo scopo di questo studio è stato quello di indagare le esperienze oncologiche ancora sconosciute dei IC attraverso le storie dei partecipanti al Concorso Artistico Letterario organizzato dal Centro di Riferimento Oncologico di Aviano (CRO) IRCSS e comprendere i temi che sono emersi dai loro testi e, quindi, la potenza della scrittura espressiva.
Materiali e metodi
Uno studio qualitativo è stato effettuato sui testi letterari utilizzando i tre livelli di analisi narrativa di Mishler: tematica (per rilevare temi e sottigliezze), strutturale (per sostenere il livello tematico), e performativo (per comprendere il significato delle narrazioni). Inoltre, le narrazioni sono state classificate in base ai modelli di Kleinman e Frank. Una particolare attenzione è stata posta sul linguaggio delle narrazioni per identificare figure retoriche, ad esempio metafore legate al cancro.
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JournalArticle
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Supportive Care in Cancer
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1433-7339
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29
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8
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4381-4388
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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 Centro di Riferimento Oncologico di Aviano (CRO) IRCSS 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 subthemes); 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 language of the narratives 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 subthemes 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.
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application/pdf
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en
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Creative Commons Attribution 4.0
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IT, EN
Alfabetizzazione sanitaria
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IT, EN
Medicina narrativa
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IT, EN
Expressive writing
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IT, EN
Ricerca qualitativa
