Research Scholars
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Hadley Stevens Smith, PhD, MPSA
Assistant Professor
Department of Population Medicine
Harvard Medical School and Harvard Pilgrim Health Care Institute
Mentor:
Janel Hanmer, MD, PhD
Associate Professor of Medicine, General Internal Medicine
Medical Director, UPMC Patient Reported Outcomes
Assistant Dean, Medical Student Research
University of Pittsburgh
Health-related Quality of Life and Family Well-being in Pediatric Patients with Genetic Conditions and their Families: A Scoping Review of the Literature
Genetic conditions that manifest in childhood can have substantial impacts on both the physical health and emotional well-being of children and their families. The objective of this project is to systematically describe empirical literature on health-related quality of life (HRQoL) measurement in pediatric patients with genetic conditions and their family members and on family well-being measurement in the context of genetic conditions. We will conduct a scoping literature review to describe: 1) the instruments used to measure HRQoL in pediatric patients with genetic conditions; 2) the instruments used to measure HRQoL in siblings, parents, and other caregivers of pediatric patients with genetic conditions (i.e., family “spillover effects”); 3) other empirical evidence on aspects of family well-being, such as caregiver experience. We will quantitatively describe and narratively synthesize findings on instruments used, study results, and study quality. Further, we will identify key evidence gaps and methodological challenges as areas for future research.
![Liz Sloss Headshot](https://fam-net.org/wp-content/uploads/2022/03/Liz-Sloss-Headshot-scaled-e1648223219376.jpg)
Elizabeth Sloss, PhD, MBA, RN, CNL
Postdoctoral Fellow
T32 Interdisciplinary Training in Cancer, Caregiving & End-of-Life Care
College of Nursing
University of Utah
Mentor:
Katherine Sward, PhD, RN
Professor
College of Nursing
University of Utah
Natural Experimentation Approaches to Explore Family Well-being: A Scoping Review
Family and caregiver well-being can be studied in new ways by leveraging existing population-level datasets through natural experimentation. However, there is a gap in the literature regarding the use of natural experimentation methods, including the availability of population-level datasets, to study family well-being. This project is a first step toward implementing natural experimentation design to study family well-being outcomes by systematically synthesizing literature on natural experiments that use large, longitudinal population-level datasets to study family well-being. The goals of this scoping review are to provide insight into population-level datasets that can be leveraged to conduct natural experimentation studies and develop the knowledge of measurable outcomes that can be used to assess family well-being across the lifespan.
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Lindsay May, MD FRCPC
Dual Pilot and Scholar awardee
Associate Professor, Pediatrics
University of Utah
Mentor:
Alex Kemper, MD
Division Chief of Primary Care Pediatrics
Nationwide Children’s Hospital
Professor of Pediatrics
The Ohio State University College of Medicine
Beyond ‘Survival’: Patient and Caregiver Well-being in Pediatric Heart Failure
Children with heart failure (HF) are subject to poor long-term outcomes in spite of high-intensity medical management. Children with HF are at risk of reduced quality of life (QoL), and at high risk of multiple hospitalizations and mortality. In pediatrics, HF, or the inability of the heart to pump blood effectively to support the needs of the body, can result from heart muscle diseases, congenital heart disease (CHD), or can be secondary to processes such as infection, arrhythmia, or chemotherapeutics. Pediatric chronic illness can negatively impact both child and caregivers’ QoL; however, the specific QoL concerns of children with HF and their caregivers are understudied. For adults with HF, there are established links between clinical outcomes and QoL of both patient and caregiver and the well-being of both has become a priority in adult HF clinical guidelines. It is plausible that similarly measuring and addressing child and caregiver QoL as an integral part of outpatient care could improve pediatric HF outcomes; however, in order to design clinical pathways to improve QoL for this unique population, we must first understand which aspects of QoL are most important to these families and select the appropriate measures. My study objectives are to: 1] identify QoL themes among outpatient children with HF and their caregivers using data obtained from semi-structured interviews, and 2] identify which combination of existing QoL measures/domains map to the QoL themes identified in the semi-structured interviews. These measures may then be used in combination as a panel to assess patient and caregiver well-being as part of larger scale study in pediatric HF, and eventually serve as an outcome measure for family-centered interventions to improve child and caregiver QoL in this population.
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Marie E. Heffernan, PhD
Dual Pilot and Scholar awardee
Assistant Professor, Department of Pediatrics
Northwestern University Feinberg School of Medicine
Associate Director, Voices of Child Health in Chicago
Ann & Robert H. Lurie Children’s Hospital of Chicago
Mentor:
Paul Pilkonis, PhD
Professor of Psychiatry, Psychology, and Clinical and Translational Science
University of Pittsburgh
Parent and Adolescent Perspectives on Adolescent Well-being
Adolescent well-being is multifaceted and includes subjective elements (e.g., happiness, finding meaning in life), relational elements (e.g., connectedness), and a bidirectional connection with physical and mental health. In the proposed research, we aim to understand the ways in which parents’ perspectives about their adolescent child’s well-being and family functioning are concordant or discordant with their child’s perspective about their own well-being, what factors predict concordance vs. discordance, and what other connections emerge among adolescent well-being, family relationships, and health.
We will use survey methodology to ask parents in a large metropolitan area about their adolescent children’s well-being and health, and separately ask their adolescent children about the same topics and other topics such as family relationships and attachment. We will examine parent-child concordance and discordance about adolescent well-being, and explore other correlates of adolescent well-being.
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Anne L R Schuster, PhD, MHS
Research Scientist
Department of Biomedical Informatics
College of Medicine
The Ohio State University
Mentor:
Heather Hampel, MS, LGC
Associate Director
Division of Genetics and Genetic Counseling
City of Hope
Conceptualizing Family Well-being in the Context of Cascade Testing: A Scoping Review of the Literature
Cascade testing is the systematic process of contacting relatives of people diagnosed with certain hereditary conditions. It is critical for increasing the identification rates of individuals with these conditions and preventing morbidity and mortality. Yet, family wellbeing can affect how members of a family seek, accept, and respond to cascade testing. The objectives of this project are to describe how family well-being is conceptualized and defined as an antecedent and/or outcome of cascade testing. To achieve this objective, we will conduct a scoping review that methodically: 1) examines the use of family well-being theories, models, and frameworks in the context of cascade testing and 2) characterizes the constructs of family well-being in the context of cascade testing.
![Yuchen Liu crop](https://fam-net.org/wp-content/uploads/2023/01/Yuchen-Liu-crop-2.jpg)
Yuchen Liu, MS
Global Health and Population
Harvard T.H Chan School of Public Health
Mentor:
Eve Wittenberg, MPP, PhD
Senior Research Scientist
Center for Health Decision Science
Harvard T.H Chan School of Public Health
The Relationship Between Frailty and Life Satisfaction Among Older Chinese Adults
Frailty, characterized by the increasing vulnerability to stressors and decreasing physiological reserves across multiple systems, is associated with decreasing quality of life and increasing risk of various chronic conditions, mortality, higher usage of healthcare services and costs. Subjective well-being refers to an individual’s assessments on various domains of his or her experience and life. Family relationships influence one’s well-being profoundly. Relationships with spouse and children become more essential for older adults, because of the care needs, changes of social ties due to decease of peers, and less involvement in workplace.
The quality of these familial interactions potentially influences the objective health of the older adults. We aim to understand the bidirectional relationships between frailty and well-being focusing on satisfaction with family relationships in the most populous country with a rapidly aging population, China, using data from China Health and Retirement Longitudinal Study (CHARLS).
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Andrea Kalvesmaki, MS, PhD
Research Health Science Specialist, VA Salt Lake City Health Care System
Research Associate, Division of Epidemiology, University of Utah School of Medicine
Mentor:
Mary Jo Pugh, PhD
Professor of Epidemiology, University of Utah School of Medicine
Research Career Scientist, VA Salt Lake City Health Care System
Identifying Youth Caregivers
More than 3 million young people in the US care for an adult with a disability, 2 million of which live with a disabled Veteran. Youth caregivers have more emotional challenges, poorer health and well-being, and poorer education outcomes than non-caregiving peers. This project will use a Community-Based Participatory Research approach to design and field a family-based questionnaire on youth caregiving roles and how caregiving may impact outcomes including education, health, and well-being. This project has the potential to impact how caregiving and “caregivers” are defined and understood, and how to better support families of disabled people and their caregivers of all ages.