Literature DB >> 29173015

When Patients Tell Their Own Stories: A Meta-Narrative Study of Web-Based Personalized Texts of 214 Melanoma Patients' Journeys in Four Countries.

Klay Lamprell1, Jeffrey Braithwaite1.   

Abstract

Malignant melanoma is an aggressive, recalcitrant disease. Its impact on people can be compounded by the physical and psychosocial consequences of medical management. Providing melanoma patients with patient-centered care that is effective, safe, and supportive throughout their journey requires knowledge of patients' progressive experiences and evolving perspectives. With ethical approval, we undertook a meta-narrative study of 214 experiential accounts of melanoma collected from the personal story sections of melanoma and cancer support websites. Using a narrative approach, we qualitatively examined the care experiences represented in these accounts and identified needs for supportive care in a framework reflective of the personal patient journey. We differentiate these across three key periods: lead-up to diagnosis; diagnosis, treatment, and recovery; and posttreatment and recurrence, and provide a visual representation of the patient journey. This article contributes to the growing body of work that utilizes Internet content as sources of qualitative, experiential health care data.

Entities:  

Keywords:  Internet; international; melanoma; narrative; patient experience; patient journey; qualitative; support needs

Mesh:

Year:  2017        PMID: 29173015     DOI: 10.1177/1049732317742623

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  5 in total

1.  Death Narratives, Negative Emotion, and Counterarguing: Testing Fear, Anger, and Sadness as Mechanisms of Effect.

Authors:  Helen M Lillie; Jakob D Jensen; Manusheela Pokharel; Sean J Upshaw
Journal:  J Health Commun       Date:  2021-09-27

2.  Breaking bad news: Awareness and practice among Sudanese doctors.

Authors:  Mumen Abdalazim Dafallah; Esraa Ahmed Ragab; Mahmoud Hussien Salih; Wail Nuri Osman; Roaa Omer Mohammed; Mugtaba Osman; Mohamed H Taha; Mohamed H Ahmed
Journal:  AIMS Public Health       Date:  2020-09-24

3.  Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study.

Authors:  Klay Lamprell; Diana Fajardo Pulido; Yvonne Tran; Bróna Nic Giolla Easpaig; Winston Liauw; Gaston Arnolda; Jeffrey Braithwaite
Journal:  JMIR Res Protoc       Date:  2021-02-26

4.  Are we on the cusp of a fourth research paradigm? Predicting the future for a new approach to methods-use in medical and health services research.

Authors:  Frances Rapport; Jeffrey Braithwaite
Journal:  BMC Med Res Methodol       Date:  2018-11-14       Impact factor: 4.615

5.  Understanding the Lived Experiences of Patients With Melanoma: Real-World Evidence Generated Through a European Social Media Listening Analysis.

Authors:  Jyoti Chauhan; Sathyaraj Aasaithambi; Iván Márquez-Rodas; Luigi Formisano; Sophie Papa; Nicolas Meyer; Andrea Forschner; Guy Faust; Mike Lau; Alexandros Sagkriotis
Journal:  JMIR Cancer       Date:  2022-06-13
  5 in total

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