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.
BackgroundThe aim of this study was to assess the psychometric characteristics of four Health Literacy (HL) measurement tools, viz. Newest Vital Sign (NVS), Short Test of Functional Health Literacy in Adults (STOFHLA), Single Item Literacy Screener (SILS) and Single question on Self-rated Reading Ability (SrRA) among Italian oncology patients.MethodsThe original version of the tools were translated from the English language into Italian using a standard forward-backward procedure and according to internationally recognized good practices. Their internal consistency (reliability) and validity (construct, convergent and discriminative) were tested in a sample of 245 consecutive cancer patients recruited from seven Italian health care centers.ResultsThe internal consistency of the STOFHLA-I was Chronbach’s α=0.96 and that of NVS-I was α=0.74. The STOFHLA-I, NVS-I, SILS-I and SrRA-I scores were in a good relative correlation and in all tools the discriminative known-group validity was confirmed. The reliability and validity values were similar to those obtained from other cultural context studies.ConclusionThe psychometric characteristics of the Italian version of NVS, STHOFLA, SILS and SrRA were found to be good, with satisfactory reliability and validity. This indicates that they could be used as a screening tool in Italian patients. Moreover, the use of the same cross-cultural tools, validated in different languages, is essential for implementing multicenter studies to measure and compare the functional HL levels across countries.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2359-0) contains supplementary material, which is available to authorized users.
In Italy, educational programs for cancer patients are currently provided by the national government, scientific societies, and patient advocate organizations. Several gaps limit their effectiveness, including the lack of coordinated efforts, poor involvement of patient feedback in the planning of programs, as well as a lack of resources on innovative cancerrelated topics. This process is parallel to a strong shift in the attitude of patients towards health in general and taking charge of their own health conditions in particular. The National Cancer Institute in the USA and the Organization of European Cancer Institutes encourage comprehensive cancer centers in providing educational programs conceived to overcome these gaps. The goal of this paper is to identify and describe the key elements necessary to develop a global patient education program and provide recommendations for strategies with practical examples for implementation in the daily activities of cancer institutes. A multidisciplinary committee was established for patient education, including patient representatives as equal partners, to define, implement, verify, and evaluate the fundamental steps for establishing a comprehensive education program. Six essential topics were identified for the program: appropriate communication of cancer epidemiology, clinical trial information, new therapeutic technologies, support in the use of medicines, psycho-oncological interventions, age-personalized approaches, and training programs for healthcare providers. Integration of these topics along with patient feedback is the key to a successful model for educational programs. An integrated educational program can transform a comprehensive cancer center to an institution that provides research and care for and with patients.Ivana Truccolo and Chiara Cipolat Mis equally contributed to this work.
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