Understanding the meaning of permanent deferral for blood donors

BACKGROUND: To ensure the safety of the blood supply, it is necessary to permanently defer blood donors with a repeat-reactive transmissible disease test result. The purpose of this study was to explore the permanent deferral experience from the donor's perspective. STUDY DESIGN AND METHODS: A qualitative study was conducted with donors from two Canadian blood centers who received written notice of permanent deferral in six deferral categories: human immunodeficiency virus-1 and/or -2 and hepatitis C virus and/or hepatitis B virus (negative, indeterminate, or positive). Telephone interviews were conducted with a semistructured questionnaire. Interview transcripts were coded and central themes were identified. The data were then modeled to illustrate the relationships between the themes. RESULTS: Twenty-eight permanently deferred donors were interviewed and described a variety of negative emotional and behavioral responses including confusion, shock, disbelief, panic, fear, anger, stigmatization, and loss. A conceptual model was developed illustrating the phases that a deferred donor goes through (identifying as a healthy donor, receiving notification, experiencing emotional and behavioral reactions, trying to make sense of what happened, and taking action) as they travel along the path to becoming either a "reconciled" or "not reconciled" permanently deferred donor. Participants offered constructive suggestions for modifying the notification process including revising the letter, providing follow-up, and educating family physicians. CONCLUSIONS: To our knowledge, this is the first study to use qualitative research methodology to explore the experience of permanent blood donor deferral. More studies are needed to validate and expand this preliminary conceptual model.