Challenges for social work in hemophilia care.

Abstract

This article discusses trends in health care that affect hemophilia social work practice in terms of clinical roles and macro interventions. Hemophilia is an X-linked, recessive trait blood coagulation disorder caused by deficiencies of clotting proteins such as Factor VIII (hemophilia A) or Factor IX (hemophilia B or Christmas disease). Individuals with hemophilia experience recurrent bleeding into muscles and joints. Frequent and prolonged episodes of bleeding into susceptible joints leads to arthritis which, in turn, is responsible for most of the pain, long-term physical disability, psychosocial stress, and financial hardship experienced by individuals with severe hemophilia (Lowe, 1997). Bleeds occurring in internal organs or in the head may be life threatening. TRENDS IN HEALTH CARE AFFECTING HEMOPHILIA CARE The presence of HIV and hepatitis C virus (HCV) in the blood supply in the 1980s highlights the inherent risk in technological advancement, which may outpace our ability to fully understand and prepare for unforeseen or unexpected complications from a new blood product. Social workers can make consumers aware that the use of new technologies involves the risk of undesirable repercussions. Conversely, scientific inquiry and its technological spin-offs have had a positive effect on treatment options and patterns of care for hemophilia management. Demonstrating accountability and conveying the distinctive nature of social work will become increasingly important as health care dollar restraint results in a smaller labor force in acute care settings. Most hospital social workers have only a small portion of their time dedicated to a hemophilia caseload, thus further reductions in time allocation could eliminate social work from core team membership. At a time when their practice roles are being impeded by a movement toward community care, social workers need to effectively articulate their function to other health care professionals and the public at large (Keigher, 1997). Hemophilia care is an excellent example of how control and responsibility for a chronic condition has shifted away from health care professionals and onto consumers. With the advent of home infusion, the day-to-day management of hemophilia rests with the patient. This partnered approach to self-care ultimately means that the final decision-making authority on management issues lies with the individual with hemophilia. Professionals who help clients assume proper responsibility are performing their roles to the utmost. Similarly, consumers can act to ensure that professionals exercise their roles in a fully accountable manner. Practitioner--client partnerships are characterized by mutual respect and equity between roles. These are essential values in redefining relationships in health care. SOCIAL WORK ROLES Clinical Practice HIV Management. The most dramatic impact of the HIV crisis on hemophilia management was that it shifted the focus from the individual patient to the family. Families were often poorly prepared to deal with the tremendous stress experienced during acute illness and throughout palliative care. Clinic staff are expected to support families during the bereavement process. Researchers have suggested that programs should identify resources outside the family to provide emotional and instrumental support (Forehand et al., 1997). Network analysis may be a particularly useful intervention, because it offers a way to examine how people's social networks may facilitate coping in communities by reducing social isolation. A review of HIV-related services at the hemophilia clinic in Vancouver identified several emerging needs for this population to which social workers can respond (Taylor, 1999). First, a strong advocacy presence is needed, because the hemophilia population is a small group within the HIV-positive community. Advocacy is particularly critical to ensure continued inclusion in drug trials and psychosocial initiatives that hold the promise of improved HIV/AIDS management. …