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What Families of Children with Medical Complexity Say They Need: Humanism in Care Delivery Change

Tuesday, May 7, 2024

There is growing consensus in systems design that “lived experience” is the cornerstone for meaningfully transforming systems of health care.¹ Lived experience purposefully integrates people who have the direct experience of living with specific health conditions, who most need intended services, and for whom progress matters most.² Frontline providers and systems leaders are able to incorporate lived experience by optimizing family partnerships to cocreate value-based systems improvement at all levels,³^,⁴ and to ensure equitable care of children with medical complexity (CMC). Capturing value from the perspective of all stakeholders for true systems transformation necessitates the inclusion of people with lived experience.⁵^,⁶

By all accounts, the system of care is not working for families of CMC, exacerbated by COVID-19. Families provide most of the home and community-based health care for their children with no reliable back up. They serve as the essential lifeline⁷ necessary for their child to achieve their full potential, amid much daily uncertainty,⁸ and are keenly aware of the system’s shortcomings on the front lines.⁶

Family colleagues codesigning improvement efforts illuminate a critical real-world view of systems of care otherwise missing and/or taken for granted: relevance sorely needed to address unintended bias and depathologize the predominant medical model of care.⁹^,¹⁰ For instance, health care services research instruments meant to measure caregiving burden in effect imply that CMC are by default a “burden” to care for.¹¹ This term implicitly undercuts the primary experience of families cherishing their child as a whole person. There may also be bias in measures of the quality of life (QoL) of CMC (and children and youth with special health care needs [CYSHCN] in general), in which the gold standard currently is to compare them against children without special needs, effectively undervaluing CMC’s QoL.¹²

On the recent Health Resources and Services Administration (HRSA)-funded Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) quality improvement (QI) initiative, family colleagues pointed out that to improve child QoL/family well-being (WB), we needed to go beyond existing survey measures that were largely medical model-focused.¹³

In response, we instituted family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams to elicit themes that would lead to meaningful system changes. Here, we share candid themes from the focus groups, in which families described the need for systems to counteract widespread misconceptions and bias they continuously experience in order to achieve meaningful system change.

Methods

The CMC CoIIN Project

In 2017, HRSA funded the CMC CoIIN over 5 years to drive system innovation through QI and fiscal innovation, partnered with family colleagues across 10 multidisciplinary state teams.¹⁴ Two of the 3 CMC CoIIN goals are of particular interest here, to improve CMC QoL and family WB, captured by 4 of the 5 project objectives: Increasing from baseline (1) CMC reporting single point/locus of management in a patient/family-centered medical home; (2) CMC with a shared plan of care; (3) families of CMC reporting previously unmet needs are being met; and (4) families reporting engagement on the clinical level (Fig 1).

Relationships Between Goals, Objectives, and Data Sources — Relationships between goals, objectives, and data sources for the CMC CoIIN. This figure demonstrates the relationships between the CMC CoIIN project’s goals and objectives (as required by HRSA) and the data sources used to demonstrate progress and improvement.

The CMC CoIIN was the first HRSA-funded care transformation project to focus on child QoL and family WB as explicit shared outcomes. In turn, the CMC CoIIN produced a diverse array of practical frameworks, models, strategies, and processes that may also be applicable to children with disabilities and CYSHCN generally.

Family-Identified Need to Add Meaningful Qualitative Data

By design, CMC CoIIN family colleagues co-led every aspect of the project at the network and state team levels, based on the core values of accountability, equity, and transparency (Fig 2). As a network-level measurement workgroup worked to identify quantitative measures, it became clear that existing medically focused measures tend to score high, suggesting at baseline that health care systems are working well for CMC and families. Yet, family colleagues made clear that systems fall far short in meeting QoL/WB needs, and measures needed to address the child and family holistically to drive the most meaningful system changes.

Continue Reading this Article online at the American Academy of Pediatrics Website

Dr. Adriana Verwey Publishes Updated Inclusive Recreation Brochure

Saturday, March 9, 2024

photo of Dr. Verwey This week at the 24th annual Anne E. Dyson memorial grand rounds and community health symposium Dr. Adriana Verwey, Assistant Professor Department of Pediatrics, Developmental & Behavioral Pediatrics was the special guest speaker in a discussion about promoting physical opportunities for all children. Dr. Verwey presented her updated inclusive recreation brochure 'A Guide to Recreation and Leisure for All in Greater Rochester'.

"Accessible recreation is a civil right and outlined in ADA accessible design standards" said Dr. Verwey

She empathized that providers who have knowledge of resources are a main facilitator of promoting inclusive recreation for children with disabilities. She discussed the health disparities that exist for individuals with disabilities and how the benefit of physical activity can improve these health disparities. Her research shows that the barriers to exercise for people with disabilities are not only program cost or transportation as would be expected, but nearly 50% of individuals reported they did not know how to exercise and, they did not know where to exercise or what facilities were available to them.

By creating this inclusive recreation brochure Dr. Verwey aims to share her knowledge of resources to accessible recreation throughout the Rochester community. She said,

“There are a lot of opportunities in our community for physical activity for individuals with disabilities”

The interactive map below was created by Dr. Verwey and displays various options for Inclusive Recreation, Dance/Theater/Music/Art, Parks and Playgrounds, and TIES (Together Including Every Student) programming within the various school districts in our region. Although we have a lot here, we don’t have enough here and we need more, she said. Dr. Verwey wants the community to know that there are places you can go! This brochure was supported with grants from the American Academy of Pediatrics, Special Olympics, and The Hoekelman Center. A link to the brochure can be found at the bottom of this article.

Panelists at this event included members of local Rochester businesses and organizations such as - Healthi Kids, Rochester Accessible Adventures, Reconnect Rochester, Abilities Movement, and the Department of Recreation and Human Services.

A Guide to Recreation and Leisure for All in Greater Rochester Brochure

The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration

Monday, January 29, 2024

Photo of Student in EEG Booth

Batten disease is a devastating rare genetic disorder. While the genetic flaw that causes this disease is well known, scientists do not fully understand the connection between this mutation and the disease’s symptoms like behavioral changes, cognitive impairment, seizures, and vision loss. John Foxe, PhD, co-director of the University of Rochester Intellectual and Developmental Disabilities Research Center (UR-IDDRC), recently described a potential neuro marker for the disease that could represent a way to better understand this complex disease and, ultimately, help researchers measure outcomes in clinical trials.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.