Research
Projects
Medical and Psychosocial Outcomes in Children with a Disorders/Differences of Sexual Development (DSD) and Their Parents
Co-PI: Amy B. Wisniewski, Ph.D. at OUHSC
Collaborators: The DSD Consortium
This study is a prospective, longitudinal, NIH-funded, multi-site R01 currently centered
at Oklahoma State University. It is the result of a longstanding collaboration between
Dr. Amy Wisniewski and Dr. Mullins. The purpose of this study is to examine the medical
and psychosocial adjustment of parents of children with DSD with ambiguous genitalia
from the time of birth to five years of age. The rare nature of this set of conditions,
as well as the complexity and constantly evolving nature of its medical management,
has resulted in a lack of available and/or comprehensive research for this population.
Thus, we aim to better assess parental adjustment (i.e., depression, anxiety, and
posttraumatic stress symptoms), related psychosocial variables such as illness uncertainty,
quality of life, and decisional regret, as well as medical outcomes following surgical
intervention, and perceptions of the quality of surgical outcomes.
Relevant Publications
This study is in year five of implementation and has yielded several publications which characterize adjustment for parents of children with a DSD over the first year following diagnosis.
- Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development
- Changes in levels of parental distress after their child with atypical genitalia undergoes genitoplasty
- Prospective assessment of cosmesis before and after genital surgery
- Psychological adjustment in parents of children born with atypical genitalia one year after their child undergoes genitoplasty
- Uncertainty and Posttraumatic Stress: Differences Between Mothers and Fathers of Infants with Disorders of Sex Development
- Predictors of Psychosocial Distress in Parents of Young Children with Disorders of Sex Development
- Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia
- Baseline Characteristics of Infants With Atypical Genital Development: Phenotypes, Diagnoses, and Sex of Rearing
Assessing Psychosocial Outcomes in Young Adults with Chronic Health Conditions
Collaborators: John M. Chaney, Ph.D.
Ashley Clawson, Ph.D.
The goal of this project is to examine psychosocial functioning and adjustment outcomes
in college students with a wide variety of chronic illnesses, including asthma, allergies,
Type 1 diabetes, and epilepsy, among others. Young adult college students with a chronic
illness experience a multitude of stressors, including the transition of health care
responsibilities from the parent to the young adult in addition to the typical stress
of going away to college and establishing new social support systems. This study seeks
to examine the complex ways in which having a chronic illness as a college student
can affect a number of outcomes such as depression, anxiety, health care management
and self-efficacy, and health-related quality of life. Additionally, this study seeks
to provide a preliminary investigation of novel predictors of risk and resiliency
in chronic illness populations such as the impact of various positive psychology factors,
including grit, and cognitive appraisals such as illness-related stigma.
Relevant Publications
This study has yielded a number of publications furthering our understanding of illness-related distress in young adults.
- The Role of Grit in College Student Health Care Management Skills and Health-Related Quality of Life
- Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses
- Adolescents and Young Adults with Asthma and Allergies: Physical Activity, Self-Efficacy, Social Support, and Subsequent Psychosocial Outcomes
- Self-esteem, Self-focused Attention, and the Mediating Role of Fear of Negative Evaluation in College Students With and Without Asthma
- Factor Structure of the Illness Intrusiveness Ratings Scale in Young Adults With Allergies and Asthma
Psychosocial Functioning in Children Newly Diagnosed with Cancer and their Parents
Collaborators: Carrick Cater, Psy.D. and Rene McNall, M.D. at OUHSC
Sunnye Mayes, PhD. at University of Louisville
This project involves the assessment of multiple cognitive appraisal variables and
their relationship to adjustment outcomes in children newly diagnosed with cancer
and their parents. This study has been an ongoing project run out of Oklahoma University
Health Sciences Center (OUHSC)’s Jimmy Everest Center, with more than 5 years’ worth
of data collection already completed. It seeks to provide a better understanding of
the multitude of psychosocial implications of having a child newly diagnosed with
cancer, as well as being a child newly diagnosed with cancer.
Relevant Publications
- Post traumatic stress symptoms in parents of children with cancer: A mediation model
- Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress
- Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer
Parent Adjustment to REhabilitation iNpatient Treatment (PARENT) Study
Collaborators: Amy Cherry, PhD at OUHSC,
Michael Johnson, MD at The Children’s Center
Tami McMichael, APRN at The Children’s Center
This project is a longitudinal study of parent psychosocial adjustment during a child’s
admission to a pediatric medical rehabilitation hospital. Children admitted to a pediatric
medical rehabilitation hospital have conditions which are typically the result of
traumatic, life threatening events (e.g., traumatic brain injuries, spinal cord injuries),
or other dangerous and debilitating conditions (e.g., stroke, cancer, burns, orthopedic
injuries). Previous research indicates that these parents and children are at increased
risk for depression, anxiety, and posttraumatic stress symptoms, though there is a
paucity of research on modifiable risk factors or clinical interventions in this population.
This study seeks to understand risk and resilience factors which affect parent psychosocial
adjustment. This project is a collaboration between Oklahoma State University, OU
Health Sciences Center, and The Children’s Center Rehabilitation Hospital.
Funding
Current
Long Term Outcomes of Interventions for Reproductive Dysfunction
Source: NIH R01 2R01HD074579-08
Role: Co-Principal Investigator
Status: Funded ($2,900,000 total costs)
Project Period: 05/01/2018 - 02/28/2023
A Clinic-Based Interdisciplinary Intervention for Parents of Children with Cancer
Source: NIH/NINR R01
Role: Co-Principal Investigator
Status: Funded ($2,754,450)
Project Period: 10/01/2013-5/31/2020
Completed Funding
Development of an Internet-Delivered Illness Uncertainty Intervention for Caregivers of Children with a Disorder of Sex Development: A Multi-Center Collaboration
Source: NIH/NINR R21
Role: Co-Principal Investigator
Status: Funded ($375,000 total costs)
Project Period: 06/03/2017 - 5/31/2019
Short term Outcomes of Genitoplasty in Disorders of Sexual Development
Source: NIH R01
Role: Co-Principal Investigator
Status: Funded ($2,300,000)
Project Period: 07/01/13-06/30/2018
Title of Project: Risk for Psychopathology and Neurocognitive Impairment in Leukemia
Survivors
Source: NIH/NCI R01
Role: Research Advisory Council Member
Status: Funded ($2,590,459)
Project Period: 02/05/10-12/31/2014
Title: A Clinic-Based Interdisciplinary Intervention for Parents of Children with
Cancer
Source: NIH/NINR R21
Role: PI
Project Period: 4/08-3/11
Status: Completed ($275,000)
Title: Assessing Parenting Capacities and Stress in Neurofibromatosis 1
Source: Heartland Genetics and Newborn Screening Collaborative, HRSA/Maternal Child
Health Bureau
Role: PI
Project Period: 9/1/06- 8/30/07
Status: Completed ($16,000)
Title: Neuropsychological Predictors of Long-Term Social Functioning in Pediatric
Cancer Survivors
Source: College of Medicine Alumni Association, OUHSC
Role: PI
Project Period: 7/1/06- 6/30/07
Status: Completed ($25,000)
Title: The Relationship of Parental Overprotection, Child Vulnerability, and Parenting
Stress to Emotional, Behavioral, and Social Adjustment in Children Newly Diagnosed
with Cancer
Source: Presbyterian Health Foundation
Role: PI
Dates: 10/1/05- 9/30/06
Status: Completed ($25,000)
Title: Reducing illness uncertainty: An intervention to promote adjustment in families
of newly diagnosed children with insulin dependent diabetes mellitus
Source: Oklahoma Center for the Advancement of Science and Technology (OCAST)
Role: PI
Dates: 09/01/00 - 09/01/03
Status: Completed ($135,000)
Title: Rural Youth and Family Program
Source: Oklahoma State Department of Education (IDEA)
Role: Co-Investigator
Dates: 08/20/00 - 08/20/01
Status: Completed ($25,000)
Title: Adaptation to Pediatric Chronic Illness: Utilization of Disease Specific Methodology
Source: Olsten Healthcare Corporation
Role: PI
Dates: 03/01/98-06/01/04
Status: Completed ($35,000)
Title: The Influence of Respite Care and Short-Term Hospitalization on Parental Stress,
Adjustment, and Health Care Utilization: A Prospective Study
Source: Oklahoma Department of Human Services
Role: PI
Dates: 12/01/97 - 12/01/99
Status: Completed ($90,000)
Title: Adaptation to Pediatric Chronic Illness: Utilization of Disease Specific Methodology
Source: Quantum Health Resources Corporation
Role: PI
Dates: 10/01/96 - 10/01/97
Status: Completed
Title: Assessment of risk factors for adjustment problems in children with chronic
illness and their parents
Source: Oklahoma State University
Role: PI
Dates; 06/01/96-07/30/96
Status: Completed
Title: Coping and adaptation in chronic illness populations
Source: University of Central Oklahoma
Role: PI
Dates: 1994-1995
Status: Completed
Title: Chronic Illness in Children and Adults
Source: University of Central Oklahoma
Role: PI
Dates: 1993-1994
Status: Completed
Title: Assessment of Chronic Illness in Adults
Source: University of Central Oklahoma
Role: PI
Dates: 1992-1993
Status: Completed
Title: An assessment of coping in children with chronic illness and their families
Source: Presbyterian Health Foundation
Role: PI
Dates: 1989-1990
Status: Completed