ArticleJournal of education and health promotion2023
Persistent suffering: Living experiences of patients with rare disease: An interpretative phenomenological study.
Article in Journal of education and health promotion, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Exploring the Illness Experience of Patients with Central Nervous System Hemangioblastomas in Von Hippel-Lindau Disease: A Qualitative Study.Healthcare (Basel, Switzerland) · 2026Article
- Perspectives on Pain: A Narrative Review of Pain Beliefs, Coping, and Clinical Implications.Journal of pain research · 2026Review
- Importance and Potential of Rare Disease Research in Pediatric Rheumatology and Beyond: Pushing Frontiers.ACR open rheumatology · 2025Review
- Nurses' experiences of providing emotional intelligence-based nursing care: a hermeneutic phenomenological study.BMC nursing · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- A Sociology of Plasma Proteins - A Technocrat's Perspective.International journal of social determinants of health and health services · 2025Article
- Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.Orphanet journal of rare diseases · 2024Article
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Authors and funding
4 authors.
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Abstract
backgroundThe low prevalence of rare diseases has caused the need for studies in this field to be neglected. Regardless of the prevalence of rare diseases, many people around the world have to live with the medical, psychological, and social consequences of their condition. Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. The life experiences of patients with rare diseases have not been sufficiently investigated. The purpose of this study was to discover the meaning of living as a person with a rare disease. MATERIALS AND
methodsThis interpretative phenomenological study was conducted in 2021-2022 on 10 patients with one of the rare diseases (registered in the Atlas of Rare Diseases of Iran). Based on purposeful sampling, people with rare diseases living in Mazandaran, Golestan, and Tehran provinces were invited to participate in the study. Data collection was done using open and semi-structured interviews. The research question was exploring understanding the experience and meaning of life as a person with a rare disease. Van Manen's interpretive phenomenological approach was used to analyze the data, and the criteria of validity, transferability, and verifiability were used to ensure the trustworthiness of the research.
resultsThe five main themes "permanent suffering, such as a bird in a cage, rejection, immersion in the whirlpool of thoughts, losing the feeling of life", and 10 sub-themes "nightmare, giving up, deprivation, limitation, worthlessness, being stigmatized, dark vision, confusion, continuous regret, and inferiority feeling" were extracted.
conclusionThe results of this study show that the suffering of the disease casts a shadow on all aspects of a patient's life with a rare disease. The effects of illness, disability, limitations, and exclusions had created a human being in a cage, whose right to live like others has been denied.
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