NATIONAL BLEEDING DISORDERS CLINICAL PRACTICE RECOMMENDATIONS FOR HEMOPHILIA TREATMENT CENTER (HTC) SOCIAL WORKERS

 

 

RECOMMENDATIONS FOR THE ROLE OF SOCIAL WORKERS IN HEMOPHILIA TREATMENT CENTERS IN THE UNITED STATES

 

Experts:  Kathaleen M. Schnur, MSW, LCSW1; Diane Bartlett, MSW, LCSW2; Bryn Dunham, MSW, LCSW3; Lucy Ramirez, MSW, LCSW4; Amy K. Wilson, MSW, LICSW5

1Hemophilia Center of Western Pennsylvania, Pittsburgh, PA, USA

2St. Luke's Hemophilia Center, Boise, ID, USA

3University of Colorado, Anschutz Medical Campus, Aurora, CO, USA

4Rush University Medical Center Hemophilia and Thrombophilia Treatment Center, Chicago, IL, USA

5M Health Fairview, Center for Bleeding and Clotting Disorders, Minneapolis, MN, USA

 

Background

The development of "Recommendations for Practice of Hemophilia Treatment Center (HTC) Social Workers" arose from efforts to define and optimize the roles of social workers (SWs) within these specialized settings. In 2018, the National Bleeding Disorders Foundation’s Social Work Working Group (SWWG) formed a task force to clarify the SW role, recognizing the importance of consistent recommendations across HTCs while respecting each center's unique needs. This effort was guided by two foundational studies that analyzed the demographics and professional roles of SWs, indicating that the majority had a master’s degree or higher and identified themselves as vital members of the health care team. A discrepancy between actual and ideal SW roles was identified, with case management being the most common task and counseling the most relevant to patient needs. Barriers such as limited training and time constraints hindered the fulfillment of these roles.

1-5

The gap between the actual work and the ideal role of social workers can create major challenges in patient care. When SWs cannot fulfill their ideal roles, it often results in unmet psychosocial needs, limited advocacy, and poor care coordination, compromising health outcomes for patients with bleeding disorders. In turn, it can hinder the social worker’s ability to effectively serve clients, which may contribute to higher rates of turnover. A follow-up study, "Defining the Micro and Macro Roles of a Hemophilia Treatment Center Social Worker in the United States from an Interdisciplinary Team Perspective," examined SW roles from the perspectives of both SWs and other HTC providers6. The study underscored the critical importance of interdisciplinary collaboration and highlighted the need for social workers to be recognized as equal partners in patient care, serving as catalysts for enhanced care coordination and effective advocacy. This research further demonstrated a need for recommendations to maximize the role of SWs in HTCs. 

 

These recommendations are designed to clarify the roles and responsibilities of SWs in HTCs while recognizing the diversity in clinical settings and patient needs. Due to the inherent complexity of the social work role, which involves addressing a wide range of psychosocial and practical needs, these recommendations offer broad guidance rather than specific directives. This approach allows SWs to tailor their interventions to the unique circumstances of each patient, fostering personalized care. Overly specific instructions could limit a social worker’s ability to adapt their clinical work, reducing efficacy.

 

The recommendations emphasize individualized care and provide a flexible framework to help SWs navigate their roles based on licensure and full-time equivalent (FTE) status while advocating for appropriate FTE allocations. Additionally, they support SWs in overcoming barriers such as time constraints and limited resources, ensuring effective, comprehensive care delivery. 

 

Remarks:  Grounded in the National Association of Social Workers (NASW) Code of Ethics and NBDF Standards & Criteria and informed by feedback from HTC SWs, these recommendations aim to guide SWs within HTCs by educating key stakeholders about the depth of advanced SW education, training, and roles. This document serves to elevate the status of SWs within HTCs and ensure leadership’s commitment to FTE positions and equitable compensation, thus bolstering retention rates. This strategic approach enhances patient care, especially with chronic healthcare diagnoses, where relationships and longevity are key factors in access and adherence. 

 

Recommendation 1.1

  • Role Definition
    • Most HTC SWs are required to hold a master's degree in social work (MSW), and many hold clinical licensure, reflecting advanced expertise. HTC SWs provide essential services, such as counseling and support for patients and families navigating the medical system. However, the SW role is increasingly expansive and unique. HTC SWs are committed to working to the top of their licensure, utilizing their expertise to address the complex needs of patients with bleeding disorders and their families. With a person-in-environment and strengths-based approach, SWs understand each patient's unique context and strengths to provide tailored support and interventions. HTC SWs engage in a variety of roles across micro, mezzo, and macro levels of care. At the micro level, they provide counseling, emotional support, and coping strategies to help patients manage the psychosocial aspects of living with a bleeding disorder. At the mezzo level, they facilitate communication and collaboration among healthcare team members and advocate for patients' and families’ needs. At the macro level, they engage in community outreach and education. They participate in research and advocacy efforts to improve care and support for individuals with bleeding disorders and their families. This multifaceted role reflects the diverse needs of the bleeding disorder patient population and underscores the specialized expertise that HTC SWs bring to their positions. Just as each patient is unique, so is the role of an HTC SW. The SW role is fluid, requiring flexibility to adapt to constant systemic changes.   

 

Recommendation 1.2

  • Counseling

    • Psychosocial assessment

    • Individual/family counseling

    • Mental health assessment and intervention

    • Crisis intervention

    • Adjustment to illness and grief counseling

    • Support groups

Remarks: Psychosocial evaluation and intervention are integral components of SW. SWs conduct comprehensive assessments of patients and their caregivers/families to ensure that services are developmentally appropriate, culturally competent, and tailored to individual needs, beliefs, and goals. This includes mental health and substance use screening and assessment, as well as support for coping with a chronic health condition. Interventions and referrals for mental health and substance use issues are provided as needed. 

SWs assess if basic needs are being met and identify barriers to care (e.g., transportation, finances, insurance), providing resources and referrals to address these challenges. Additional responsibilities include coordinating with local social service agencies, support and advocacy with schools, employers, and the local/national community, as well as vocational guidance or resources tailored to each patient.

Many HTC SWs hold licensure as Clinical SWs, indicating advanced training and expertise. They implement clinical interventions as part of their psychosocial responsibilities, utilizing evidence-based interventions for anxiety, depression, grief, trauma, and family dynamics to support patients and families. In some HTC settings, SWs provide therapy to patients seeking psychological counseling. When appropriate, SWs refer patients to external mental health providers for specialized treatment, ensuring continuity of care and ongoing support. 

HTC SWs stay current with the latest research and best practices in psychosocial interventions through ongoing professional development and training. Their licensure and competency play a crucial role in promoting the mental health and well-being of patients and families affected by bleeding disorders.

Recommendation 1.3

  • Grants/Research
    • Administration of Maternal and Child Health Bureau (MCHB) & Centers for Disease Control and Prevention (CDC) grant projects
    • Quality Improvement projects
    • Grant writing
    • Grant reporting
    • Creating budgets

    • Conducting research & writing manuscripts

       

Remarks:  Some HTC SWs play a key role in grants and research administration, managing projects funded by agencies such as the MCHB and the CDC. Their responsibilities may include grant writing and reporting, budget management, research coordination, data collection, and dissemination of findings. Through this work, SWs help advance knowledge and promote evidence-based practices in bleeding disorder care. Because of their direct involvement, they are often uniquely positioned to understand and implement the comprehensive care priorities outlined by federal funders, and to communicate these priorities to the rest of the care team.

 

Recommendation 1.4

  • Case Management
    • Information & referral services to community programs/organizations
    • Discharge planning
    • Patient & family education
    • Networking & resource sharing

    • Documentation

       

Remarks:  Most HTC SWs engage in comprehensive case management to ensure patients and families receive coordinated care. This could include providing information and referral services to community programs and organizations, coordinating discharge planning, facilitating patient and family education, and networking with other healthcare providers to optimize patient outcomes.

 

SWs assess knowledge gaps and preferred learning methods, provide education in the patient's preferred language, and address health literacy needs. This is an ongoing process tailored to individual needs. HTC SWs create educational materials that are disseminated widely, including outreach materials, clinical care information, and tools for collaboration with other healthcare providers, schools, employers, and insurance plans. SWs assess patients’ and families’ preparedness and safety in managing bleeding disorders, and connect them to relevant resources, educational materials, and support services as needed. They also provide healthcare transition support to adolescents, young adults, and their families, focusing on preparing for independence in healthcare and addressing transitions in education, employment, and living situations. In recent years, transition support has evolved with the aging bleeding disorder population, recognizing the many transitions that occur across the lifespan. 

 

Recommendation 1.5

  • Financial & Insurance
    • Educating patients/families on insurance/financial resources
    • Assisting patients/families in accessing insurance benefits
    • Advocating and communicating with sources of insurance and benefits
    • Linking patients/families with pharmaceutical assistance programs
    • Assisting with Medicare, Medicaid, and commercial insurance
    • Assisting with Social Security application & benefits

 

Remarks: Some HTC SWs assist patients and families in navigating the complex landscape of insurance and financial resources. 

 

Recommendation 1.6

  • Outreach Programs
    • Community education
    • Home visits
    • School visits
    • Speaking engagements & presentations
    • Program development
    • Advocacy and lobbying
    • Fundraising & working with chapters/foundations
    • Hemophilia & bleeding disorder camps
    • Creating/publishing newsletters
    • Websites & other social media updates

 

Remarks:  Some HTC SWs actively participate in outreach programs to educate communities about bleeding disorders and connect individuals with vital resources. Outreach efforts include home and school visits, public speaking engagements, and the development of community education initiatives. Additionally, SWs may plan and participate in outreach clinics, ensuring that SW psychosocial assessments and interventions reach patients and families in their communities.

 

Collaboration is central to these programs; HTC SWs partner with local chapters/foundations and organizations to coordinate and support bleeding disorder camps. They may also enhance communication and awareness by creating newsletters, maintaining websites, and updating social media platforms to share critical information.

 

Advocacy is another essential aspect of outreach. HTC SWs work at the local, state, and national levels to address systemic barriers affecting healthcare access, insurance coverage, disability rights, and funding for research and education. They collaborate with professional associations, patient advocacy groups, and policymakers to develop strategies that drive legislative and regulatory change. Beyond direct advocacy, they empower patients and families with the knowledge and skills to advocate for themselves, amplifying their voices in healthcare discussions and policymaking.

 

Recommendation 1.7

  • Administrative
    • Public Health Service (PHS)/340B Hemophilia Factor program
    • Data and oversights of the American Thrombosis and Hemostasis Network (ATHN) Clinical Manager
    • Registries
    • Management (such as serving as HTC Manager or Program Coordinator)
    • Working groups

 

Remarks:  Some HTC SWs play a vital role in administrative functions that support the center’s operations. These responsibilities can include managing specialized programs such as the 340B Factor program, ensuring compliance with program regulations, and overseeing financial and patient access aspects. Additionally, SWs may be involved in data management and oversight through platforms like the American Thrombosis & Hemostasis Network (ATHN) Clinical Manager, contributing to registries that track patient outcomes and treatment efficacy.

 

Beyond data oversight, SWs often take on leadership roles, serving as HTC managers or program coordinators, ensuring seamless clinic operations, and enhancing patient care services. Many HTC SWs participate in national and international working groups, collaborating on best practices, policy development, and quality improvement initiatives. 

 

Recommendation 1.8

Final Remarks: HTC social workers are essential to comprehensive care, addressing the complex biopsychosocial needs of patients and families with bleeding disorders. While federal funding requirements mandate that each HTC have a social worker, staffing decisions must account for the profession’s vast skill set, broad impact, and the limitations of shared or fractional FTEs. Backed by advanced education, licensure, and specialized training, HTC SWs often work without peer support, making institutional backing, equitable resources, and strong leadership critical.

 

Their expertise improves patient outcomes, strengthens workforce retention, advances knowledge, promotes health equity, and drives advocacy at every level. Regardless of structure or size, every HTC must not only employ a trained and licensed SW but also staff the role in a way that reflects its scope, complexity, and value to the bleeding disorders community.

 

Future Research Needs:

  • Research how HTC SW staffing levels and interventions affect patient adherence, mental health, quality of life, and long-term health outcomes.
  • Identify systemic, financial, and institutional challenges that limit HTC SWs ability to perform their roles, including burnout, retention, funding constraints, and interdisciplinary support gaps.
  • Explore strategies to improve the integration of HTC SWs into healthcare teams, improve communication, and enhance training for interdisciplinary care.
  • Assess the role of HTC SWs in policy advocacy, research initiatives, and legislative efforts to improve healthcare access, insurance coverage, and patient support programs.

 

REFERENCES

  1. Dunn L, McGeady L, Geary M, et al. Hemophilia treatment center social workers’ involvement with local bleeding disorder chapters: Preliminary results of a national survey. Poster presented at NHF Bleeding Disorder Conference 2015. 

 

  1. Geary M, Kachalsky E, Pennick L, et al. Perceived roles of hemophilia treatment center social workers in the United States and barriers to those roles. Poster presented at NHF Bleeding Disorder Conference 2016. 

 

  1. Geary M, Kachalsky E, Pennick L, et al. Social work caseloads in hemophilia treatment centers in the United States. Poster presented at NHF Bleeding Disorder Conference 2016.

 

  1. Geary MK, McGeady L, Dunn L, et al. The demographics of the United States hemophilia treatment center social workers: The results of a national survey. Haemophilia. 2014; 20: 500-505.

 

  1. Kachalsky E, Geary M, Pennick L, et al. The role of the hemophilia treatment center social worker in the United States. Poster presented at NHF Bleeding Disorder Conference 2016. 

 

  1. Bartlett DL, Schnur KM, Wilson AK, Moorman SS. Defining the micro and macro roles of a hemophilia treatment center social worker in the United States from an interdisciplinary team perspective. Haemophilia. 2022; 1-8. https://doi.org/10.1111/hae.14612

 

  1. National Association of Social Workers. NASW Standards for Social Work Practice in Health Care Settings. Author; 2016.

 

  1. NBDF. (2022).  MASAC document 269:  Standards and criteria for the care of persons with congenital bleeding disorders. https://www.bleeding.org/healthcare-professionals/guidelines-on-care/masac-documents/masac-document-269-standards-and-criteria-for-the-care-of-persons-with-congenital-bleeding-disorders

 

 

Keywords: 

delivery of integrated healthcare, hemophilia, bleeding disorders, patient care team, scope of practice, social work, standard of care

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