NHF funds a broad range of research programs that seek to increase our understanding of the science behind bleeding disorders, how they affect people's lives, and pathways to better treatments and cures.
Post-Traumatic Stress Disorder (PTSD) and Posttraumatic Stress Symptoms (PTSS) Among Adults with Hemophilia A and B
Amanda Stahl, MSW, LICSW is the social worker for adult patients at the Boston Hemophilia Center at Brigham and Women’s Hospital, where she has been providing clinical services to patients with bleeding disorders since 2015. She participates in multiple national committees, joining the NHF Social Work Working Group in 2019, and the ATHN Access to Care Working Group also in 2019. For the past 2 years she has been a speaker at the NHF Bleeding Disorders Conference presenting on her research and information about Post-Traumatic Stress Symptoms for patients with acute and chronic illness. Amanda is a “double eagle” graduating with both her BA in 2006, and MSW in 2010, from Boston College.
Role of the HTC Social Worker
The Prevalence of Depression and Anxiety in Children with Coagulopathies Being Treated at a Hemophilia and Thrombosis Center
The hemophilia and thrombosis centers in Tucson and Phoenix would like to join efforts to make a meaningful contribution to our understanding of the mental health profile of our pediatric population. This knowledge could contribute to a more tailored approach when designing clinics and programming, and, by identifying mental health issues, inform the development of targeted interventions. We hope to look at the prevalence of depression and anxiety in children with bleeding disorders including hemophilia, von Willebrand disease, and other congenital coagulopathies. We expect that the existence of a chronic health condition could affect a child's psychological development. We're also aware of the critical impact of family culture so our survey will include data on the mental health of the participants’ primary caretakers as well as other significant socioeconomic markers.
Improving the Quality of Life for the Aging Patient with Hemophilia
As a social worker at Gulf States Hemophilia & Thrombophilia Treatment Center, I have the privilege of serving patients across their lifespan. I would like to initiate grass roots education about hemophilia in Houston, Texas, by offering educational programming to specialized health care professionals who work directly with the aging population in nursing homes and assisted living communities. This would include executive directors and administrators of these facilities as well as direct clinical staff.
Empowering the Future of Hemophilia through Swimming
Swimming is an important life skill that benefits hemophilia patients medically and psychosocially. The goal of this project is to provide inner city children and teenagers the opportunity to learn how to swim. The swim program will be held at the Detroit Medical Center, where a team of professionals will teach the basics of swimming with the goal of independent swimming by the end of the program. The team will measure the children's progress medically and psychosocially throughout the program. This program will provide children and teenagers at our HTC with an amazing opportunity and also a very important life skill. We will also be using adult hemophilia patients to teach the children how to swim, which will provide them with work experience and community involvement.
Mothers' Perceived Vulnerability, Protective Behaviors and Stress in Relation to Their Sons with Hemophilia
It is unknown if there are differences in attitudes and behaviors between mothers of sons with hemophilia who have a known family history of hemophilia compared to mothers without a known family history. To capture these differences, this study will measure mothers' perceived vulnerability of their sons, protective behaviors toward their sons and reported stress in the mother-son relationship. Sixty mothers will complete the following surveys: Parent Protection Scale, Child Vulnerability Scale and Parenting Stress Index/Short Form. The results of this data will influence clinic social work practice in the comprehensive care model at hemophilia treatment centers.
The Role of the Hemophilia Treatment Center Social Worker: A National Survey
Social workers have been active members of the multidisciplinary teams of hemophilia treatment centers for many years, but the roles of these social workers may differ greatly from center to center. Social workers are often the advocate for patients and a primary source of assistance, information and referral. In many HTCs, they also provide counseling and therapy services to patients and consultation to staff. Indeed, these social workers appear to provide a wide variety of psychosocial and case management services to patients with bleeding disorders and their families. This research project will attempt to describe the various role tasks of hemophilia treatment center social workers, describe these tasks and identify the influences of the role in each HTC. An online survey will be developed and emailed to the approximately 135 HTC social workers across the nation. Data will be analyzed and shared with the social worker community through sessions and posters and the NHF annual meeting.
A Standardized Approach to Empowering Families with Hemophilia
Hemophilia is a rare lifelong condition which can be potentially life-threatening. Parents bare a significant responsibility for delivery of medical care because the treatment for hemophilia begins early in life for children within the home setting. As a result, parents frequently exhibit a heightened level of stress, anxiety, and subsequent trauma around the acceptance of the illness and the administration of medication management. To address the multifaceted nature of chronic illness for patients and their families, the ideal treatment utilizes a multidisciplinary team. Our proposed 3P Patient Parent Power Program aims to standardize care for families with patients of hemophilia using a tiered approach of psychosocial support. The necessary level of support will be provided to parents in order for them to successfully provide in-home prophylactic factor treatment. The goal of the program is to reduce parental stress and anxiety related to this chronic illness and increase feelings of empowerment for the parent and child.
Understanding the Role of Spirituality and Religiosity among Adolescent Hemophilia Patients
This study explores perceptions among adolescent aged patients with inherited bleeding disorders regarding religiosity/spirituality and whether their beliefs have an impact on the pain they experience. Subjects participating will be assessed in regards to the type, frequency and intensity of pain experienced and measures used to cope with the pain. Finally, we will measure patient self reports of disease self efficacy. To further assess the impact of religiosity/spirituality on the family system, we will be measuring parental perceptions of religiosity/spirituality with parents of the participating adolescents.
Resilience and Quality of Life in Individuals Aging with Hemophilia
Individuals with hemophilia are living longer than previously expected because of advances in treatment, including the development of clotting factor replacement. However, we do not understand the psychological and emotional impact of aging with hemophilia, how this affects quality of life, and how resilience and healthy coping skills are developed and maintained. For example, we do not know if persons with hemophilia: (a) retire early because of having a disability, although this may be a reasonable assumption; (b) if they are financially secure; and (c) how much joint damage impacts the ability to move, walk, and perform everyday activities. We also do not know what special challenges arise from aging with hemophilia, and if this leads to more divorces, an increase in living alone, and a greater need for help to remain independent. There is little research showing which traits help persons with hemophilia continue to mature, and keep an emotional balance while dealing with a lifelong, chronic condition and how all these traits improve or reduce quality of life.
Socialization of Adult Men with Hereditary Bleeding Disorders and the Role of Spouse and Significant Other
The purpose of this pilot study is to characterize social integration of persons with congenital bleeding disorders (PWCBD), specifically adult males with hemophilia A or B. Due to early onset of bleeding symptoms, they are predisposed to acute, life-threatening bleeding, bleeding complications, risk for long-term disabling hemophilic arthropathy, and blood-borne infections. A European study has shown that adult males with hemophilia have inferior socialization as measured by work, work disability and health-related quality of life when compared to adult men in the general population. We hypothesize that a broader view of socialization components also contribute to quality of life. We also propose that the role of the spouse or significant other may have relevance for current social work goals in providing comprehensive care for adult PWCBD.