Family Adaptation Study Following the Diagnosis of Hypoplastic Left Heart Syndrome in a Newborn

Summary

Survival for one of the most complex forms of congenital heart disease, hypoplastic left heart syndrome (HLHS), has improved dramatically. However, little is known about family stress, coping and outcomes following the diagnosis of HLHS. It is expected that families face emotional, social and financial stressors. Health care professionals have a unique opportunity to positively influence how families interpret and adapt to these stressors. The specific aims of the study are to describe perceived stress, and coping skills utilized, in parents of children with HLHS and their impact on family outcomes measured as well-being, adaptation and caregiver/family quality of life, and to describe changes in stress, coping, and adaptation and differences in perceptions of mothers versus fathers of children with HLHS over the first 14 months of life. The Resiliency Model of Family Adjustment and Adaptation (McCubbin, Thompson, \& McCubbin, 1996) is the theoretical framework that guides this research.

Hypotheses:

1. Family perception of stress, and coping skills utilized, will have an impact on family outcomes measured as well-being, adaptation, and caregiver/family quality of life.
2. Variables influencing perception of stress and variables influencing family coping will be significant predictors of family adaptation outcomes.
3. Perceptions of stress, coping skills utilized, and family adaptation outcomes will improve during the first 14 months of life with an infant with HLHS.
4. Mothers and fathers will report different perceptions of stress, coping skills utilized, and family adaptation outcomes during the first 14 months of life with an infant with HLHS.

Conditions

• Hypoplastic Left Heart Syndrome

Sponsors & Collaborators

• Children's Hospital and Health System Foundation, Wisconsin

  collaborator OTHER

• American Nurses Foundation

  collaborator OTHER

• Columbia University

  collaborator OTHER

• Boston Children's Hospital

  collaborator OTHER

• University of Michigan

  collaborator OTHER

• Children's Hospital of Philadelphia

  collaborator OTHER

• Johns Hopkins All Children's Hospital

  collaborator OTHER

• Medical University of South Carolina

  collaborator OTHER

• Arkansas Children's Hospital Research Institute

  collaborator OTHER

• Nicklaus Children's Hospital f/k/a Miami Children's Hospital

  collaborator OTHER

• Medical College of Wisconsin

  lead OTHER

Principal Investigators

• Kathleen A Mussatto, PhD, RN · Children's Hospital and Health System Foundation, Wisconsin

Eligibility

Max Age

3 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2006-06-30

Primary Completion

2011-05-31

Completion

2019-09-05

Countries

• United States

Study Locations