How do people with neurofibromatosis type 1 (the forgotten victims) live? A grounded theory study.
Background: Neurofibromatosis type I (NF1) is a rare genetic disorder, associated with some physical symptoms including spots and tiny bumps on the skin, and internal organ involvement. People suffering from neurofibromatosis face various challenges in their daily lives. However, there is little und...
| Publicado en: | Health Expectations Vol. 25; no. 2; pp. 659 - 667 |
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| Autores principales: | , , , |
| Formato: | questions and answers research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Apr2022
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=155950191&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 155950191 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Apr2022 vid: 25 iid: 2 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 155950191 154753077 155950191 155950191 10.1111/hex.13413 155950191 ppf: 659 ppct: 8 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: How do people with neurofibromatosis type 1 (the forgotten victims) live? A grounded theory study. aug: au: Foji, Samira Mohammadi, Eesa Sanagoo, Akram Jouybari, Leila affil: School of Nursing and Midwifery, Sabzevar University of Medical Sciences, Sabzevar, Iran sug: subj: Neurofibromatosis 1 Diagnosis Neurofibromatosis 1 Symptoms Rare Diseases Patient Attitudes Coping Evaluation Human Grounded Theory Qualitative Studies Iran Comparative Studies Hopelessness Male Female Support, Psychosocial Neurofibromatosis 1 Complications Funding Source Male Female ab: Background: Neurofibromatosis type I (NF1) is a rare genetic disorder, associated with some physical symptoms including spots and tiny bumps on the skin, and internal organ involvement. People suffering from neurofibromatosis face various challenges in their daily lives. However, there is little understanding on how patients deal with neurofibromatosis. This study aimed to investigate the life challenges of patients with NF1. Methods: This qualitative study was performed by implementing a grounded theory with the cooperation of the Society for Neurofibromatosis Patients over the course of 15 months in 2019 across 4 provinces in Iran. Twenty‐four patients with NF1 were interviewed. An analysis was performed using the constant comparative method. Findings: The results of the analyses indicated that the major concern of the NF1 patients was feelings of failure and falling behind in life. In the face of failure in life in such a context, patients used the main strategy of "unsuccessful struggle to escape" the disease and its complications, which was represented itself in the forms of 'hopelessness and impatience', 'suicidal thoughts and unsuccessful suicide attempts', 'isolation and seclusion', 'expressing complaints and grievances to God', 'hiding the disease' and 'hopelessness and refusing to receive care'. The implementation of such strategies helped patients reduce tension and achieve a temporary, though vulnerable and fragile, sense of relief and peace. Conclusion: Given an unfavourable life condition, NF1 patients turned to a harmful passive strategy in the face of the challenges posed by the disease. Patient or Public Contribution: Public contributors were active partners throughout, and co‐authored the paper. pubtype: Academic Journal doctype: questions and answers research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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