Experience of patients with neurofibromatosis: A qualitative research

Abstract

Context: Neurofibromatosis type 1 (NF1) is one of the most common genetic skin disorders that impose significant psychological and social pressure on patients. Aim: The objective of the study was to explore the experiences of patients with neurofibromatosis. Setting and Design: Iran - qualitative study Materials and Methods: This qualitative study was conducted in 2020. Eighteen patients with Neurofibromatosis type 1 (NF1) entered the study with maximum variation through purposeful sampling. Semi-structured interviews were used to collect data. Statistical Analysis Used: Conventional content analysis method was used for the data analysis. Results: Based on analyzed data, five categories including “Feeling defective and incompetent,” “Succumbing”, “Perceived social deprivation”, “Encountering oppression and violation of rights”, and “Rejection” were found. Conclusion: It was shown that patients with NF1 had unpleasant experiences. Besides the challenges that they had to tolerate with the nature and symptoms of the disease, the disease imposed severe social and psychological pressures on them. Based on findings, it is essential to establish supportive strategies that would help patients deal with problems of the disease effectively.