Fear of pain in people with hemophilia and their families – a pilot study

Pain is one of the most threatening feelings, and people will usually do whatever they can to avoid it. People with hemophilia (PWH) suffer from acute pain from the early days of their life - during blood tests and factor IV infusions. Later, they start to suffer from chronic pain due to target joint damages, inner bleedings, hematuria and so on. The families of PWH are also exposed to the PWH’s pain, and usually are also involved in medical procedures that the PWH undergo and they even cause the pain when they infuse their children the IV factors. The present study aimed to find out the amount of fear of pain in PWH and their relatives. Method: The fear of pain Questioner - FPQ-III: The Fear of Pain - was given to 24 PWH with severe hemophilia, most of them type A, and 39 family members. PWH’s range of age was 10-94 with an average age of 32. Results: Analysis of the questioner revealed that PWH presented significantly less fear of pain compared to their family members. We find the same results even when we compared the PWH’s fear of pain to those of students, hospitalized patients and even of chronic pain patients (according to publication of other studies). Conclusions: When we try to understand the surprising results of the study, which means that PWH fear of pain less than the other populations, we may go in two directions: First, it might be that PWH are getting used to the pain or to the fear of pain, or developed emotional coping mechanisms due to the fact that they are exposed to pain almost from day one of their lives. The second way of understanding this may be that the PWH learned to hide their feelings and they use a denial mechanism, meaning that they are denying their fear of pain feelings.