I AM THE ARCHIVE.PHP FILE

Author: Jessica Famularo

OPENPediatrics Complex Care Journal Club Podcast: CISWH Experts Share Best Practices for Ensuring Human Dignity in Care for Children with Medical Complexity

Bethlyn Vergo Houlihan , Center for Innovation in Social Work and Health (CISWH) project director, and Meg Comeau, CISWH senior project director, appeared on the latest OPENPediatrics Complex Care Journal Club Podcast where they shared recent findings from a qualitative analysis of focus groups with families of children with medical complexity. The purpose of the 27 focus groups across 10 states was to gain a better understanding of families’ quality of life and well-being, and how care providers could better meet their children’s and families’ needs.  

Through powerful focus group reflections, families expressed the importance of counteracting societal bias about children and families with medical complexity by viewing each child as a whole person rather than just a medical diagnosis. When providers respond to a child with medical complexity as a whole human, capable of leading a life full of meaning and joy, the experience of care is  transformed for everyone in the family and the care provider team. CISWH researchers also found that building trusted relationships and incorporating family expertise into decision-making are the most important, yet often missing, elements of care for families. Incorporating family expertise into decision-making can lead to strong improvements in child quality of life and family well-being.   

 
Excerpt from “Upholding Human Dignity for Children with Medical Complexity and their Families” by the OPENPediatrics Complex Care Journal Club Podcast: 

 
“I think it’s all part of that same sense of the family saying, ‘Look, our child is not a burden, our child is a joy’. And it’s the system, or a lack of system really all around, that isn’t able to provide the support. It’s this much larger daily experience of [families] feeling they’re constantly fighting to say, ‘I just want what we know we need so that my child can live, can just be a child and enjoy childhood experiences’. I think it makes a huge difference for everybody when you’re able to bring your humanity into an encounter and into a relationship, and that’s not always easy to figure out how to do. But I think that that is exactly what families are saying that needs to be elevated, emphasized, and valued as one of the most important things that they need in order to feel like it’s improving their daily lives for them and their children.” 

 
Listen to the full episode here.  

CISWH Experts Present ‘The Future of Care for Children with Medical Complexity’ Virtual Café Series

In this family-driven interdisciplinary café-style series, funded by the Lucile Packard Foundation for Children’s Health (LPFCH)  and presented by co-principal investigators (PIs) Bethlyn Houlihan and Meg Comeau of the Center for Innovation in Social Work and Health (CISWH) at BU School of Social Work, experts share perspectives on what matters most to families of children with medical complexity (CMC) to improve systems of care. The sessions are largely based on learnings from the Collaborative Improvement and Innovation Network to Advance the Care of CMC (CMC CoIIN). Cafés focus on facilitated, active group discussions for concrete strategies to advance policy, clinical practice, research, and interdisciplinary education, elevating family leader colleagues throughout. Participants’ ideas are then synthesized thematically using generative AI and distributed widely. 

 

3/27/24 – Café #1: Where We Are Now & Where We Need to Go 

In the first café, Cara Coleman, JD, MPH, The Bluebird Way Foundation, and Meg Comeau, MHA, CISWH, provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of CMC and their families through federal, state, and local initiatives. Bethlyn Houlihan, MSW, MPH, CISWH, took a deep dive into participants’ questions and facilitated large group discussion to garner insights into improving systems of care of CMC including actionable strategies, resources, and leverage points for change. 

View the recording, slides, and related materials here.  

 

5/29/24 – Café #2: Humanism in Clinical Care to Meet Whole Child/Family Needs 

In this session, Bethlyn Houlihan, MSW, MPH, CISWH, and Dennis Kuo, MD, MHS, University of Rochester, shared current framing around what matters most to families from, “What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change”, focusing on strategies for humanism in practice to improve care delivery and mitigate systems-level bias. Participants then explored how to reinvigorate human-driven approaches to meet whole child/family needs in systems of care. 

View the recording, slides, and related materials here. 

 

7/24/24 – Cafe #3: Policy Opportunities 

In this hour-long café, Lisa Kirsch, MPaff, senior policy director of the dean’s office at Dell Medical School, and Meg Comeau, MHA, CISWH senior project director, will share framing around the current policy landscape for CMC. Through facilitated discussion in breakouts, participants will explore and learn together where policy opportunities lie for both small and substantial changes at the local, state, and national levels. We will reconvene the group to share high-level takeaways from breakouts and ideas will be synthesized thematically using generative AI and distributed widely. 

 Learn more and register here.  

 

8/21/24 – Café #4: Family-Driven Approach to Understanding Family Well-Being and Its Facilitators 

Jay Berry, MD, MPH, and Katie Huth, MD, MMSc, FRCPC, both of Boston Children’s Hospital, will discuss the current state of research priorities for CMC, including family-driven measurement. Participants will join breakouts where they will explore meaningful research opportunities to advance policy and practice, particularly around family well-being and novel approaches that are family-driven. The group will reconvene to share high-level takeaways from breakouts.  

Learn more and register here. 

 

10/30/24– Café #5: Health Equity and Anti-Ableism Through Family Partnership 

This café will be led by discussants Nikki Montgomery, MA, MEd, GPAC, Director of Strategy and Communications, Family Voices, mother of a child with medical complexity; and Michelle J. White, MD, MPH, Associate Professor of Pediatrics, Duke University School of Medicine. Discussants will first give examples of the pressing need to address bias in systems of care and move from a medical to social model of care, and key ways family colleagues’ lived expertise is essential to humanizing systems.  Through facilitated discussion in breakouts, participants will explore and learn together tangible tools, strategies, and resources to effectively partner with families to make real progress in health equity and anti-ableism. We will reconvene the group briefly to share high-level takeaways from breakouts. 

Learn more and register here. 

 

12/4/24 – Café #6: Sustainability and Strategic Partnerships  

The final café will be led by Jeff Schiff, MD, MBA and Rich Antonelli, MD, MS, with lead facilitation by CISWH’s Meg Comeau, MHA. Based on current efforts at state, territorial, and national levels, they will share a strategic yet practical perspective for advancing sustainable care coordination and integration despite its elusive challenges. The experts will discuss the power of embracing radical incrementalism in Medicaid and emphasize the critical role that collaborative leadership with families plays in sustainability efforts. Through facilitated breakout discussions, participants will explore strategies to progress toward meaningful sustainability and strategic partnerships in systems of care. 

Learn more and register here.  

 

Learn more about the CMC CoIIN. 

Pediatrics: New Assessment Tool Enhances Family Engagement in Healthcare Systems Change

A recent Pediatrics article by CISWH researchers identifies the Family Engagement in Systems Assessment Tool (FESAT) as a key tool for improving family partnership in healthcare systems changes. The article highlights how two state teams from the Collaborative Improvement and Innovation Network (CoIIN) for Children with Medical Complexity (CMC), Colorado and Oregon, utilized the FESAT to assess and advance family engagement on their teams for quality improvement projects to improve quality of life of CMC, the well-being of their families, and the cost-effectiveness of their care. 

The FESAT, developed by Family Voices, is a valuable tool in facilitating meaningful engagement for family colleagues in healthcare systems change. The case studies from CMC CoIIN teams in Colorado and Oregon revealed key lessons: 

  • Early partnerships with family leaders are crucial for successful quality improvement initiatives. Both Colorado and Oregon emphasized the importance of involving families and youth from the outset of their projects to co-design the initiative.

  • Repetitive use of the FESAT allows teams to consistently evaluate and improve family engagement practices over time. By regularly assessing their progress and adjusting strategies through a consensus-driven process, quality improvement teams can ensure meaningful partnerships with family leaders for systems change.
  • The FESAT operationalizes transparency and communication to allow for targeted and specific action plans for culture change; both domains are essential to fostering meaningful partnerships with families.
  • Adapting the research methods and approaches to reflect the current experiences and needs of family leaders on the team is necessary for effective engagement.

  • Cross-team learning and sharing in family partnership efforts allows teams to learn from one another and accelerate progress. 

The implementation of the FESAT provides valuable guidance for interprofessional teams seeking to deepen family engagement in systems of care change initiatives. 

Read the full article here.

GlobeNewsWire: National CISWH Initiative Addresses HIV-Related Inequities Through Supportive Housing Interventions

In an effort to address HIV related disparities, the Center for Innovation in Social Work and Health (CISWH) at Boston University School of Social Work (BUSSW) and the Corporation for Supportive Housing (CSH) have embarked on a national initiative to implement, adapt, and evaluate housing interventions for three priority populations affected by HIV. 

The Supporting Replication (SURE) of Housing Interventions project, also known as the SURE Housing Initiative,is funded by the Health Resources and Services Administration’s HIV/AIDS Bureau. The project targets individuals experiencing homelessness or housing instability in the United States and addresses the critical intersectionality among housing status, HIV diagnosis and health outcomes of individuals. The three priority populations of this initiative include LGBTQ+ individuals, youth and young adults, and those involved with the legal system. The SURE Housing Initiative seeks to reduce disparities in HIV care and outcomes. 

This innovative project emphasizes the crucial role of housing as a social determinant of health and its impact on HIV prevention and care outcomes. Through collaborative efforts, the SURE Housing Initiative strives to advance health equity, quality and accessibility in housing and healthcare services for vulnerable populations that are affected by HIV. 

Excerpt from “National Implementation of Supportive Housing Initiative to Close the Gap on HIV-Related Inequities Outlined in the National HIV/AIDS Strategy” originally published in GlobeNewsWire:

“‘We know people with HIV experiencing homelessness and housing instability continue to disproportionately face challenges in accessing care and achieving improved health outcomes,’ said Allyson Baughman, PhD, MPH, and principal investigator at BUSSW. ‘This innovative initiative represents opportunities to integrate HIV care and behavioral health with housing interventions to improve health outcomes among priority populations of people with HIV.’”

Read the full press release here.

CISWH’s Year of Transformation and Global Impact

Celebrating Social Work Month this March, we put a spotlight on CISWH. Social workers play a crucial role in healthcare by bridging the gap between medical care and social services to ensure that individuals and communities receive quality, affordable, holistic care. By providing support, advocacy, and resources to patients and families facing medical challenges, social workers help others navigate the complexity of our healthcare and social services systems. They also contribute to research and policy development by working to address social determinants of health and promote health equity. It is important we, as a society, continue to recognize the vital contributions of social workers in health and the transformative impact of their work.

As we enter Social Work Month this March, we take a moment to reflect on CISWH’s commitment to social work and health over the past year. CISWH, in collaboration with dedicated professionals and leaders, has conducted transformative research and launched initiatives that will leave a lasting impact on the intersection of social work, health, and public health.

Boston Children’s Hospital

Boston University School of Social Work (BUSSW) Prof. and Research Core Director Christina Lee is leading a research project with Boston Children’s Hospital that examines the impact of social workers on health outcomes for children and families in Child Protective Services. Under her guidance, a team of BUSSW faculty analyzed data trends in the utilization of the Children’s Hospital emergency department, social work services, and referral patterns. As the project advances into the data analysis phase, findings are expected to be unveiled in late 2024.

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN)

In 2023 CISWH concluded its work on the HRSA-funded CoIIN program for children with medical complexity. The CoIIN brought together groups of interdisciplinary teams of families, social workers, medical providers, policy makers, and payers to develop strategies to improve child quality, family well-being, and cost-effectiveness of care. The culmination of this 5-year project resulted in the publication of several papers in the journal Pediatrics, showcasing the team’s significant contributions in increasing access to care for children with medical complexities.

Supporting Replication (SURE) of Housing Interventions in the Ryan White HIV AIDS Program

In 2023 the SURE Housing Initiative was funded to implement and evaluate housing-related interventions for people with HIV who experience unstable housing. Through collaborative efforts with project partners, 10 community organizations were chosen nationwide to implement housing interventions for individuals with HIV. As the selected organizations prepared to implement the intervention, the SURE team conducted a comprehensive training on how to evaluate the multi-site project at the first all-site meeting in Washington D.C.

Visit to Kenya

In July Ellie Zambrano, CISWH executive director, BUSSW Prof. Margaret Lombe, and MSW students traveled to Kenya to collaborate with Jesuit Refugee Services (JRS), the United Nations International Children’s Emergency Fund (UNICEF), the United Nations High Commissioner for Refugees (UNHCR), the United Nations Fund for Population Activities (UNFPA), the Nymbani Children’s Home Orphans, and the Catholic University of Eastern Africa in Nairobi, Kenya on new programming. The goal of the trip was to learn more about refugee experiences in eastern Africa and the role social workers can play in improving the lives of displaced communities.

Project IMPACT
BUSSW Prof. Astraea Augsberger, along with Wendy Zeitlin from Montclair State University and Trupti Rao from the Westchester Institute of Human Development, received a National Institute of Health grant to expand the reach and funding for their successful Project IMPACT (Improving Parenting Achievements Together). This intensive parent training program, tailored for parents with intellectual disabilities in the child welfare system, demonstrated success in preserving families compared to standard services. Prof. Augsberger is now conducting learning sessions with policymakers, practitioners, and researchers to share findings and shape the next steps in research, practice and policy advocacy.

The Prevention of Violence Against Young Children in South Africa

BUSSW Profs. Margaret Lombe and Lenette Azzi-Lessing recently completed a one-year research project in which the team identified community-driven and evidence-based interventions to address violence against young children in South African communities. The team will now share their evidence globally in the hopes of mainstreaming these interventions.

Fellows Program

In 2023 CISWH established a Graduate and Doctoral Fellows Program to help prepare social work and public health leaders for influential careers in the field. CISWH fellows conduct research, create policy briefs, support strategic planning, and much more.

Recent Events

Pediatrics: Lessons Learned and Future Directions for Improving Care of Children with Medical Complexity Through CISWH Project

The population of children with medical complexity (CMC) is steadily growing, and with it comes a rising awareness of the challenges faced by their families—lack of access to needed health and social services, financial hardship as the result of high expenses, and lost income and missed opportunities for improving outcomes. To address these needs, the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) funded the Center for Innovation in Social Work and Health (CISWH) at Boston University’s School of Social Work (BUSSW) to lead the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN).

In a new seven-paper journal supplement published in Pediatrics, a group of CMC CoIIN leaders lay out lessons learned over the duration of the project (2017 – 2022), its impact, and the future of its work to improve child quality of life, family well-being and cost-effectiveness of care. The first article in the supplement gives an overview of CISWH’s CMC CoIIN project.

How a Collaborative Improvement and Innovation Network (CoIIN) Works

A CoIIN brings together groups of interdisciplinary teams of families, medical providers, policy makers, and payers to form a network aimed at identifying problems, developing and applying interventions, and evaluating the impact of said interventions using evidence-based processes. The separate teams come together regularly to share findings with one another and ensure that successes are spread throughout the network.

The CMC CoIIN had three goals for the project across ten state teams:

● Improve the quality of life for CMC
● Improve the well-being of their families
● Improve the cost-effectiveness of care of CMC

Equitable, Measurable Family Partnership and Core Values as Guiding Principles

Guided by nationally-recognized family leaders, clinical and implementation science experts, state-based teams, affiliate organizations, and individual families, the CMC CoIIN held equitable, measurable family partnership as a key principle in achieving its goals. The following are examples of strategies used to operationalize this guiding principle:

● Active family leader participation, serving on the project’s National Advisory Committee and as faculty, case presenters, moderators and learners in the COVID-19 and CMC Extension for Community Healthcare Outcomes (ECHO) medical education program.
● Training, technical assistance, and financial support for family leaders participating in the CMC CoIIN provided by the CISWH-based leadership team.
● Tools, resources, peer-mentoring support and coaching for family leaders provided by Family Voices.
● Use of the new Family Engagement in Systems Assessment Tool (FESAT) to help state teams measure levels of family engagement in systems-level work, and, based on this data, develop team-driven plans to increase it.
● A family leaders’ affinity group call every 6 weeks for shared problem-solving and peer-support.
● Required monthly reporting by state teams on family engagement activities and outcomes to the CISWH-based leadership team.

The CMC CoIIN also centered its work around three core values:

● Accountability: The CMC CoIIN leadership and state teams held themselves accountable to CMC and their families, ensuring that families were part of the process and empowered to share their perspectives.

● Transparency: The teams held honest conversations and were open to sharing both challenges and successes across teams and hierarchies. The network was committed to building a community of trust, encouraging teams to share their disappointments and challenges, in addition to identifying any “wins” as a source of valuable learning for everyone.

● Equity: In the CMC CoIIN, family leaders were treated as equals among clinicians and other team members. Family leaders themselves were required to be treated as equals with one another as well, regardless of experience, child’s age, diagnosis, or status as a paid family leader or volunteer.

What We Learned

Over five years, the CMC CoIIN made considerable progress in understanding and quantifying the challenges of families raising CMC, particularly during the COVID-19 pandemic.

While the CMC CoIIN made good progress on improving the quality of life for CMC and the well-being of their families, the network made fewer gains on improving cost effectiveness, largely because of the small number of CMC enrolled across all teams and the impacts of the pandemic—it was difficult to see meaningful change in claims and utilization data that could be directly credited to the CoIIN teams’ interventions.

As the first collaborative quality improvement network for improving the quality of life for CMC and their families, the CMC CoIIN gained valuable learnings and experience which could have implications for future improved care delivery for this growing population of children across the United States.

Learn more about topic-specific impacts of the CMC CoIIN through the January 2024 Pediatrics Supplement.

Social Work Leadership in Substance Use Treatment and Social Justice Advocacy: A Conversation with Dr. Nabila El-Bassel

Social Work Leadership in Substance Use Treatment and Social Justice Advocacy:
A Conversation with Dr. Nabila El-Bassel

A Virtual and In-Person Event

Friday, January 26, 2024
9:00AM – 11:00AM
Zoom; Boston University School of Social Work Conant Lounge
264 Bay State Road
Boston, MA 02215
View the Recording

A Panel Discussion Presented by the Center for Innovation in Social Work and Health at the BU School of Social Work and the Grayken Center for Addiction at Boston Medical Center

Join Dr. Nabila El-Bassel, director of the Social Intervention Group at Columbia University, for an engaging discussion as she explores the intersection of social work leadership in substance use treatment and social justice advocacy. Dr. El-Bassel will share insights from her work at the local, national, and global levels and engage in dialogue with BU School of Social Work (BUSSW) scholars about their work in substance use prevention, treatment, and social justice advocacy.

Moderated by CISWH Research Core Director Prof. Christina Lee, BUSSW faculty, including Profs. Ruth Paris, Jordana Muroff, Luis Alvarez-Hernandez, and Peter Treitler, will discuss their research projects, shedding light on the connections between social work, advocacy, and leadership.

Dr. El-Bassel is known for her work as the director of the Social Intervention Group at Columbia University, a multi-disciplinary center focused on prevention and interventions targeting HIV, drug use, and gender–based violence. Dr. El-Bassel’s work is funded extensively by the National Institute on Drug Abuse and the National Institute of Mental Health. She is seen as a national and international leader in the areas of global HIV and health.

Register Here

Accessibility:
Boston University strives to be accessible, inclusive, and diverse in its facilities, programming, and academic offerings. Your experience in this event is important to us. If you have a disability (including but not limited to learning or attention, mental health, concussion, vision, mobility, hearing, physical, or other health-related issues), require communication access services for the deaf or hard of hearing, or believe that you require a reasonable accommodation for another reason, please contact the event organizer at [email protected] to discuss your needs.

CISWH Board Member Dr. Vanessa Kerry Appointed WHO Director-General Special Envoy for Climate Change and Health

Dr. Vanessa Kerry, advisory board member for the Center for Innovation in Social Work & Health (CISWH), has been appointed the first-ever World Health Organization (WHO) Director-General Special Envoy for Climate Change and Health. In her new role, Dr. Kerry will raise awareness of the global impacts of climate change and advocate for strong policies and partnerships to promote the health of communities affected by global warming.

Dr. Kerry is the co-founder and CEO of Seed Global Health, director of the global Public Policy and Social Change program at Harvard Medical School and an associate professor of medicine at Harvard University. She is a renowned doctor and expert in global health who continues to play a pivotal role in climate and health advocacy.

“We are excited and proud to have Dr. Kerry as an advisor and resource in achieving the Center’s vision to be a global partner in cross-sector collaboration to promote health, health equity, and social justice, ” says Ellie Zambrano, CISWH executive director.

As a practicing critical care physician, Dr. Kerry is committed to furthering the conversation on the link between global health and economic growth, community development and national security.

Utilizing her extensive experience, Dr. Kerry hopes to use this leadership role as a way to shape policies, foster collaborations and drive transformative action to safeguard the health of current and future generations in the face of the climate crisis.

Read Full WHO Announcement Here.

The BUSSW Statement: Supreme Court Decision on the Use of Race in Admission Decisions

Dear BUSSW Community, 

By now you may have heard about the Supreme Court’s decision today, June 29, 2023, regarding the use of race in considering applicants’ admission to colleges and universities. This is deeply disappointing news and one that is a set back and at odds with the values and mission of BU and our School.  Please see President Brown’s letter in response to the announcement in which he affirms BU’s enduring commitment to working within the parameters of the law to continue to support and grow the diversity of our student body, and a story in BU Today that shares reaction from the BU community.

As President Brown explains, BU is reviewing the decision to better understand the implications for the University.  However, I want to unequivocally state that the SCOTUS decision in no way changes our commitment to a diverse student community.  We will redouble our efforts to grow and support racial and ethnic diversity at our School and will work closely with central administration to ensure we do so within the parameters of the law.  We will not let this decision hinder our ongoing efforts to recruit students from underrepresented communities and we will continue to support them in their journey as they apply to and attend BUSSW. 

As we have always done when evaluating student applications, we will continue to holistically consider an individual’s background and experiences and their potential for success and contribution to society – guided by our School’s vision and mission.  It is our intention to maintain those financial aid policies that open our doors to economically disadvantaged students – policies that have made our student body the most diverse in our School’s history. And finally, to the extent permitted by law, we will maintain those programs that support students from diverse backgrounds and embed them in our community.  Guided by our professional values and commitment to a more just society, the School will continue its robust program of research and scholarship to further advance social, racial, and economic justice. 

As we continue to learn more about the implications of the decision, we will keep you updated on programmatic and policy changes we may need to consider.  We are open to hearing thoughts and ideas from our community to help inform the strategies we will develop to navigate this new landscape.  We want to also ensure that everyone understands the ramifications of this decision and the parameters that we will need to work within moving forward.   

Sincerely,

Dean Jorge Delva

Taking Action: Social Work and Civic Health

Eleanor Zambrano, CISWH executive director, presented “Taking Action: Social Work and Civic Health” at the McLean Hospital Annual Golda Edinburg Lecture on March 30, 2023. This annual event honors the late Golda Edinburg, (MSW ’46). She was invaluable in developing the McLean social work department, and was recognized not only at McLean but throughout the country for her contributions to social work practice.

In this year’s lecture, Zambrano shed light on the Center for Innovation in Social Work and Health’s work, civic health engagement, and ways to discover your power as a practitioner.

“Social work is the fastest-growing profession in healthcare in the United States, according to the Bureau of Labor Statistics. Between 2021 and 2031, the social work profession will grow by almost 10%, faster than the average for all other occupations in the US,” Zambrano said. ”Part of what makes our profession unique is that we recognize how human behavior is impacted by the social environment, and we understand that the obstacles experienced by the communities we serve are more often than not barriers that are created by policies and systems.”

Zambrano highlighted the professional code of ethics that calls on social workers to address social problems, respect the self-determination of individuals and utilize civic engagement within interventions. It is important for social workers to engage with political processes and systems. By connecting clients and community members to the democratic process, Zambrano hopes that social workers can continue to break political and systemic barriers.