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.

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.

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.

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.

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).