ArticleInternational journal of qualitative studies on health and well-being2015
Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study.
Article in International journal of qualitative studies on health and well-being, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Living with a rare disorder: a systematic review of the qualitative literature.Molecular genetics & genomic medicine · 2017Pooled it
- A Retrospective Observational Study of Quality of Life in a Northern Greece Population of People with Haemophilia.Life (Basel, Switzerland) · 2024Article
- Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong.International journal of environmental research and public health · 2022Article
- Beliefs and Values About Gene Therapy and In-Utero Gene Editing in Patients with Hemophilia and Their Relatives.The patient · 2020Article
- No friends 1.Orphanet journal of rare diseases · 2020Article
- Telehealth Interventions for Improving Self-Management in Patients With Hemophilia: Scoping Review of Clinical Studies.Journal of medical Internet research · 2019Article
- Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study.Patient related outcome measures · 2019Article
- Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative.Journal of multidisciplinary healthcare · 2019Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The study illuminates the subjective experience of haemophilia in people who took part in the Haemophilia Experience, Results and Opportunities (HERO) initiative, a quali-quantitative research program aimed at exploring psychosocial issues concerning this illness around the world. Applying a bottom-up analytic process with the help of software for textual data, we investigated 19 interviews in order to describe the core themes and the latent factors of speech, to explore the role of different variables in shaping the participants' illness experiences. The five themes detected are feeling different from others, body pain, acquisition of knowledge and resources, family history, and integration of care practices in everyday life. We illustrate how nationality, age, family situation, the use of prophylaxis or on-demand treatment, and the presence of human immunodeficiency virus or hepatitis C virus affect the experience of our participants in different ways. Findings are used to bring insights on research, clinical practice, and psychosocial support.
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