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

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.

Lindsay May, MD, FRCPC (dual Pilot and Scholar awardee)

Associate Professor, Pediatrics

University of Utah

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.

Gesine Hearn, RN, MA, PhD

Associate Professor

Department of Sociology

Idaho State University

Father Involvement in the NICU: A Pilot Study

The health of family members is a pivotal factor in family well-being.  According to the U.S. Department of Health and Human Services (DHHS), family well-being includes being safe, being healthy, and having opportunities for educational advancement and economic mobility. Poor health of family members can negatively impact family well-being and child outcomes. Research has shown that poor parental health has negative effects on child health. Father involvement in the Newborn Intensive Care Unit (NICU) has been shown to help improve father confidence, competence, knowledge, and reduce stress, which may help to improve positive outcomes for the entire family.

We are particularly interested in the relationship between father involvement in the NICU and infant and family outcomes over time.  There is growing evidence documenting the association between increased father involvement and a variety of positive child outcomes, though very few are longitudinal. The purpose of this proposal is to assess feasibility of recruitment, processes, and test performance of data collection instruments for our planned future longitudinal research project.  Our planned future proposal is a longitudinal, prospective cohort study that will use a mixed-method approach and will include surveys, interviews, and follow-up home visits when the infants are aged 1 and 2 years. This pilot study is crucial for planning for a successful future longitudinal study.  The specific aims of this pilot work are to test recruitment, test instruments, develop qualitative interview questions, and identify issues related to family well-being and contributions of fathers to this well-being.  We will also be testing potential associations between father involvement and confidence with measures of paternal well-being such as sleep, stress, and resiliency.

Megan C. Thomas Hebdon, PhD, DNP, RN, NP-C

Assistant Professor

School of Nursing

University of Texas at Austin

Outcome Measurement and Psychosocial Context of Family Caregivers’ Financial Well-Being

Megan C. Thomas Hebdon is a nurse by training, and currently works as a family nurse practitioner in a community clinic for individuals who are under- or uninsured, in addition to her research and teaching roles. Her research focuses on the supportive care needs of early and mid-adulthood family caregivers, with a specific emphasis on employment and financial well-being.

Dr. Thomas Hebdon’s research project focuses on financial well-being for family caregivers with a three-fold approach 1) a scoping review on financial interventions for family caregivers: 2) quantitative surveys examining financial and holistic well-being, workplace productivity, and caregiving burden, and 3) grounded theory analysis of interviews with diverse family caregivers regarding financial well-being. Dr. Hebdon and her co-investigator, Dr. Carolyn Phillips, will map the antecedents, attributes and measurement of financial well-being, and outcomes related to financial well-being to guide future intervention development.

Laura Hart, MD, MPH, FAAP, FACP

Assistant Professor of Pediatrics

Adjunct Assistant Professor of Medicine

Nationwide Children’s Hospital

The Ohio State University College of Medicine

Understanding Family Well-being in Families with an Individual with Intellectual Disability

Family members of individuals with an intellectual disability (ID) report high levels of caregiver burden and stress. As a result, efforts have been made to better understand and improve both individual and family well-being within families with an individual with ID. The previous work seeking to understand the dynamics of family well-being in families where a family member has ID has limitations, however, including a lack of data regarding the well-being of siblings and the need for a theoretical framework. And while the study of the dynamics of family well-being has been considered for families generally, the unique dynamics of family well-being among families with a family member with ID have not.

To help address these gaps, we intend to complete a systematic review of reviews to 1) develop a conceptual framework for family well-being among families with an individual with an intellectual and developmental disability and 2) identify existing measures for family well-being overall and the components of family well-being in this population to determine the domains within the framework where measures are needed.  This proposal will result in the development of a conceptual framework of family well-being specifically in families that include an individual with ID.  It will also provide a comprehensive view of the dynamics of family well-being in such families, providing a foundation for producing a measure of family well-being to be used in future research.