‘Just an unfortunate coincidence’: children’s understanding of haemophilia genetics and inheritance

Abstract

This paper presents the results of a study talking to children and young people affected with severe haemophilia A and/or haemophilia B about their knowledge and understanding of genetics and inheritance. These data were gathered in a qualitative study using semi-structured interviews with thirty boys aged four to sixteen discussing the impact of haemophilia on their lives. Responses were tape recorded, transcribed and analysed, using thematic analysis; one of the themes identified was genetic knowledge which is presented in this paper. Genetic knowledge was formed within the context of normal day-to-day lives within families affected by haemophilia, with parents and haemophilia centre staff being sources of information about individual inheritance patterns as well as providers of information about the future genetic impact of having haemophilia.

Self‐management and skills acquisition in boys with haemophilia

“…The content of the narratives could be grouped and coded into seven recurring themes, which were recognized by the research team as important aspects of modern day life with haemophilia. Six of these themes have been published elsewhere; the seventh, development of self‐management skills, is discussed here.…”

Youth perspectives on genetic inheritance, carrier status and disclosure

“…In addition, neither study included any standardisation in the interview questions used to measure the concept of inheritance and genetics in the different age groups. The difference in results between the two studies may, at least in part, be explained by improved accessibility to information by parent and child, better patient/parent education, and participants having grown up with a brother with haemophilia in the later study by Khair et al [12]. Unlike the children interviewed in the study by Spitzer, those in the study by Khair et al had access to the internet, which offers a source of instant communication, social interaction and networking with friends, as well as providing access to health information on a variety of topics, including genetics and inheritance [13,14].…”

“…Findings indicated that the children in the study had very limited understanding of their disease and how haemophilia is inherited. • In a qualitative study by Khair et al in 2011, data on knowledge and understanding of genetics and inheritance were gathered using semi-structured interviews from 30 boys (aged 4-16 years) with haemophilia A (n=27) and haemophilia B (n=3) [12]. The children in this study had a good awareness of the genetics and inheritance of their haemophilia.…”

“…According to Williams and Smith, a child's biological understanding of inheritance develops with age [18]. Older children and adolescents in the UK are now taught genetics and inheritance as part of the National Curriculum for Science and have a physiological understanding of inheritance [12,19,20]. Studies by Lindvall et al, involving young people and adults with haemophilia aged 13-25 years and over 25 years, showed that 69% and 96% of patients respectively were aware of inheritance [21,22].…”

Genetic Service Delivery: Infrastructure, Assessment and Information

“…Within the Great Ormond Street Hospital for Children NHS Trust, Haemophilia Centre, boys with hemophilia demonstrated a good awareness of genetic risks associated with their disorder. Surveys suggested that knowledge was gained from family members as well as center providers [33]. Thus, genetic counseling through a disorder-specific treatment center can be effective in providing practical genetic information to affected individuals.…”