A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia

Summary.  The Canadian Physiotherapists in Hemophilia Care (CPHC) sought to learn about attitudes and behaviours of young male adults with mild haemophilia towards their condition and care. Semi‐structured in‐person or telephone interviews were conducted with 18 young men from and across Canada. This report summarizes the participants’ attitudes towards their haemophilia, previous injuries, perceived barriers to seeking treatment, as well as their decision‐making process when self‐assessing injury. The interviews demonstrated that communication between the young adults and the health care team was not optimal, with common reference to the ineffectiveness of lecture style education. Gaps in knowledge also emerged regarding bleed identification and management.

[1]  R. Nuss,et al.  Mild Hemophilia in Children: Prevalence, Complications, and Treatment , 1998, Journal of pediatric hematology/oncology.

[2]  E. Rodríguez‐Merchán Effects of hemophilia on articulations of children and adults. , 1996, Clinical orthopaedics and related research.

[3]  M E Duffy,et al.  Compliance in adolescents with chronic diseases: a review. , 2000, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[4]  K. Larson,et al.  Knowledge, attitudes, and behaviors of youths in the US hemophilia population: results of a national survey. , 2006, American journal of public health.

[5]  Peter Reason,et al.  CO-OPERATIVE INQUIRY, PARTICIPATORY ACTION RESEARCH & ACTION INQUIRY: THREE APPROACHES TO PARTICIPATIVE INQUIRY , 1994 .

[6]  K. Peerlinck,et al.  Mild haemophilia: a disease with many faces and many unexpected pitfalls , 2010, Haemophilia : the official journal of the World Federation of Hemophilia.

[7]  J. Astermark,et al.  Mild haemophilia in Sweden , 2010 .

[8]  Rodríguez-Merchán Ec Effects of hemophilia on articulations of children and adults. , 1996 .

[9]  J. Bijlsma,et al.  Blood‐Induced Joint Damage: An Overview of Musculoskeletal Research in Haemophilia , 2008 .

[10]  F. Rosendaal,et al.  Definitions in Hemophilia , 2001, Thrombosis and Haemostasis.

[11]  A. Rafowicz,et al.  What factors influence the age at diagnosis of hemophilia? Results of the French hemophilia cohort. , 2002, The Journal of pediatrics.