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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

Stethoscope on a chartThis 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.


Assessing Psychosocial Outcomes in Young Adults with Chronic Health Conditions

Collaborators: John M. Chaney, Ph.D.
Ashley Clawson, Ph.D.

man holding a iPad sitting next to a woman with a laptopThe 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.


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

African American mother and child kissing each other's cheeksThis 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


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

Mother and child being affectionateThis 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

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