Sickle cell mutual assistance groups and the health services delivery system

Abstract

One of the main reasons individuals with sickle cell disease (SCD) join self-help groups is to address the problems they perceive in the health care delivery system, such as long delays in hospital emergency departments, inadequate training of health care workers about SCD, and frequent accusations of drug-seeking behavior. This formative evaluation study surveyed the leaders of 11 self-help groups which are attempting to make changes in the health care system, representing 8% of the 134 known SCD self-help groups. The group leaders reported the problems their groups perceived in health care delivery, the obstacles they encountered in trying to make changes in the system, and the approaches they employed in addressing the perceived problems. This study shows that, in educating themselves and others about the experience of SCD, the members of the groups have taken a pro-active role in their own health care which gives them a sense of empowerment that they would not otherwise have. The activism of the SCD self-help groups is also helping to redefine the traditional relationship between patient and provider, and it signals an emerging new role for self-help groups in general.