Narrative Medicine Across Languages and Cultures: Using Minimal English for Increased Comparability of Patients’ Narratives

Peeters, Bert; Marini, Maria Giulia

doi:10.1007/978-3-319-62512-6_11

Cited by 20 publications

(18 citation statements)

References 11 publications

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“…A sociodemographic survey constituted the written narrative, together with an illness plot, 34 35 namely a plot related to the illness experience: it serves to guide narratives in a chronological order to identify evolutions over time and is characterised by evocative and open words that facilitate individual expression. 36 Three illness plots were designed for three different groups-underage and adult patients with PWS, and caregivers (online supplementary material 2)-while addressing common aspects: (A) diagnosis and current management of the condition, namely the strategies related to food behaviours; (B) daily living with PWS, namely the relational sphere and social context; and (C) the work experience and future perspectives.…”

Section: Data Collectionmentioning

confidence: 99%

Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

et al. 2020

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ObjectivesPrader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and settingThe project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project’s steering committee.ParticipantsTwenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.ResultsThe analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants’ future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.ConclusionThe project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.

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Section: Data Collectionmentioning

confidence: 99%

Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

et al. 2020

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“…The Minimal English has gained momentum across various disciplines and there are several studies conducted by Wierzbicka's colleagues in which Minimal English is successfully implemented in fields like narrative medicine (Peeters and Marini 2018), disability and mental health issues (Jordan 2017), diplomacy (Maley 2018;Farrelly and Wesley 2018), human rights discourse (Mooney 2018), among others.…”

Section: Further Developments and Applications Of Nsm: Minimal Languagementioning

confidence: 99%

“…Минимальный английский набирает силу, и уже есть несколько исследований, проведенных коллегами A. Вежбицкой, которые свидетельствуют о его успешном использовании в таких областях, как нарративная медицина (Peeters, Marini 2018), проблемы недееспособности и психического здоровья (Jordan 2017), дипломатия (Maley 2018;Farrelly, Wesley 2018), правозащитный дискурс (Mooney 2018) и др.…”

Section: дальнейшее развитие и применение есм: минимальный языкunclassified

Anna Wierzbicka, language, culture and communication

Gladkova

Larina

2018

Vestn. Ross. univ. družby nar., Ser. Lingvist.

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The Introductory article to the second part of the Special Issue dedicated to Anna Wierzbicka's anniversary focuses on her research in the domain of language and culture interchange. It overviews the fundamental concepts of Wierzbicka's research program, those of cultural keywords and cultural scripts within the cultural semantics and ethnopragmatics paradigm. As is the case with other Wierzbicka's linguistic studies, the analysis involves representation of meaning in terms of universal human concepts of the Natural Semantic Metalanguage (NSM). The article also discusses the concept of Minimal Language as a recent development in the NSM programme and associated research into various fields.

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“…NM is considered informative since integrating all the perspectives involved in the care pathway helps to reveal common issues as well as possible interventions or solutions about experiencing a condition [9,[11][12][13]. The parallel chart and the illness plot represent the main NM tools, respectively dedicated to healthcare professionals and to patients and caregivers [14,15]. Recent studies demonstrated the advantages of applying the parallel chart in exploring healthcare professionals' point of view on the care pathway for chronic conditions (i.e.…”

Section: Introductionmentioning

confidence: 99%

The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

Testa

Cappuccio²,

Latella

et al. 2020

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Background: The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of heart failure (HF) on the daily life of patients and their carers. Methods: Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. Results: 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients’ and their caregivers’ daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. Conclusions: This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.

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Narrative Medicine Across Languages and Cultures: Using Minimal English for Increased Comparability of Patients’ Narratives

Cited by 20 publications

References 11 publications

Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research

Anna Wierzbicka, language, culture and communication

The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

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