title: 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.
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.
authors.affiliation: Department of Education Studies, University of Bologna, Bologna, Italy; laura.palareti2@unibo.it.
authors.forename: Laura
authors.initials: L
authors.lastname: Palareti
authors.affiliation: Department of Education Studies, University of Bologna, Bologna, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Potì
authors.affiliation: Hemophilia Center, University of São Paulo Faculty of Medicine Clinics Hospital, São Paulo, Brazil.
authors.forename: Frederica
authors.initials: F
authors.lastname: Cassis
authors.affiliation: Department of Education Studies, University of Bologna, Bologna, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Emiliani
authors.affiliation: Health Information Research Unit, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: Davide
authors.initials: D
authors.lastname: Matino
authors.affiliation: Health Information Research Unit, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: Alfonso
authors.initials: A
authors.lastname: Iorio
mesh_terms: D000367:Age Factors; D004644:Emotions; D005006:Ethnicity; D005190:Family; D006467:Hemophilia A / Q000150:complications / Q000523:psychology / Q000628:therapy; D002836:Hemophilia B / Q000150:complications / Q000523:psychology / Q000628:therapy; D006801:Humans; D008297:Male; D010146:Pain; D012648:Self Care; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D006113:United Kingdom; D014481:United States; D014777:Virus Diseases / Q000150:complications
keywords: Haemophilia; cross-cultural; patient perspective; psychosocial; thematic analysis