The actual and ideal roles of haemophilia treatment centre social workers in the United States and the barriers to ideal roles.

INTRODUCTION: Social Workers (SWs) provide valuable services on multidisciplinary teams of Haemophilia Treatment Centres (HTCs). However, their roles have not been defined and standardized. This paper identifies six major SW roles, including counselling, case management, financial/insurance, outreach/programs, administrative, and grants/research. Roles were further classified as 'actual' roles, those that SWs were actively practicing, and 'ideal' roles, those that SWs felt were most important for their clients. AIM: The goal of this study was to determine the actual and ideal roles of HTC SWs and the barriers to ideal roles. METHODS: An online survey was tested with a focus group and then e-mailed to 147 SWs who were working in the 141 HTCs across the United States. RESULTS: Fifty-five percent of the SWs completed the survey. Data revealed that SWs' most prominent actual role was case management in their work with three client sub-populations: adult patients, paediatric patients and family members. However, SWs identified counselling as the ideal role that was most important for all client groups. Barriers to practicing ideal roles included lack of SW input, insufficient budgeted time and inadequate training. Salaries were found to be stagnant compared to 2010. Twenty-five percent of SWs reported no supervision. CONCLUSIONS: Survey results gave evidence that although HTC SWs were primarily engaged in case management roles, they wanted to take on larger counselling roles. Efforts should be made to eliminate barriers to ideal SW roles so that SWs can provide additional psychosocial services for HTC patients.

The dangers of iron overload: bring in the iron police.

PURPOSE: To increase awareness of nurse practitioners (NPs) about the dangers of iron overload and to review common hematologic conditions where transfusions are essential, iron mechanism and transport within the body, effects of iron overload on the body, and treatment options available. Finally, the process for development of a protocol for monitoring such patients will be introduced. DATA SOURCES: Review of existing literature, myelodysplastic syndrome guidelines, sickle cell guidelines, thalassemia guidelines. CONCLUSIONS: Transfusions of packed red blood cells save lives. There are many hematologic conditions for which packed red blood cell transfusions are required as a result of bone marrow suppression. However, extended exposure to red blood cell transfusions places the patient at an additional risk of iron overload. Iron overload is a real concern for patients who become transfusion dependent, with increased risks of liver cirrhosis and cardiac arrhythmias. IMPLICATIONS FOR PRACTICE: NPs in all areas of practice can increase awareness of the dangers of transfusional iron overload, and become familiar with the treatment options available. Additionally, NPs can institute a monitoring program based on the protocol suggested here within their own practices to prevent poor outcomes for patients with transfusion-related iron overload.

Aging with hemophilia: implications for social work practice.

Individuals with hemophilia and other congenital bleeding disorders are surviving beyond any life expectancy previously predicted and now face conditions associated with "normal" aging. Hemophilia along with co-morbid conditions of HIV and Hepatitis C complicate treatment for heart disease, cancer, kidney disease, and other age-related diseases. Lack of understanding of the condition, its treatment, and its costs hampers care, particularly when patients are treated outside of specialty clinics. This article provides an overview of bleeding disorders with a special focus on aging considerations. The role of social work in specialized hemophilia treatment centers is described and suggestions made to other social workers who may encounter this population in their practice. Finally, the need for policy and advocacy strategies is also addressed.