Communicating about haemophilia within the family: the importance of context and of experience

Abstract

This study examines communication within families affected by haemophilia, focusing especially on communication about carrier status. A qualitative study using semi-structured interviews with family members in the UK revealed recurrent patterns in communication strategies and styles. Participants drew a marked contrast between the nature of communication within the clinic and within the home. In families, it is notable that communication usually occurs within the context of concrete experience of the condition. Noticeable differences existed in families with obligate carriers when compared with families with non-obligate carrier daughters. In families with affected sons, daughters may have more experience of haemophilia and consequently more understanding of their possible carrier status than in families with an affected father. Families also typically make value judgements and comments on coping strategies when they communicate about the condition. Readiness to receive information is very variable, and depends upon factors such as personality and life stage. Information may seem to be successfully communicated but the recipient may sometimes actually comprehend much less, only understanding more fully later or when the information becomes directly relevant to them. Periodic checking of understanding of different family members, and the provision of written information, may be helpful.