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

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.