Henry’s Hospitals:
OU Medical Center: Children’s Hospital (Oklahoma City)
Stanford University: Lucile Packard Children’s Hospital (Palo Alto, CA)
Learn more about congenital heart defects:
Congenital Heart Information Network
Cincinnati Children’s Hospital: Heart Institute
Encyclopedia
Research on and for families caring for chronically ill
children (medical journals)
Patient and familial stress as a result of congenital heart disease
and/or heart transplant
Parenting stress and parental post-traumatic stress
disorder in families after pediatric heart transplantation (Farley, Lisa, et
al., Journal of Heart and Lung Transplantation, February 2007, 120-126).
Family
stress, perceived social support and coping following the diagnosis of a
child’s congenital heart disease (Young, Ran and McCubbin, Marilyn, Issues
and Innovations in Nursing Practice, January 2002, 190-198).
PTSD
in heart transplant recipients and their primary family caregivers (Stukas, Arthur, et
al., Psychosomatics, May-June 1999, 212-221).
Parent education after newborn congenital heart surgery (Pye, Sherry, et
al., National Association of Neonatal Nurses: The Long Road Home – Focus on the
Family, 2003, 147-156).
Maternal experiences making a decision about
heart surgery for their young children with congenital heart disease
(Lan,
Shu-Fan, et al., Journal of Clinical Nursing, 2007, 2323-2330).
Learning and other
developmental outcomes in CHD children with intensive surgical interventions
Developmental outcomes after pediatric heart
transplantation (Chinnock, Richard, et al., Journal of Heart and Lung
Transplantation, October 2008, 1079-1084).
Long-term
developmental outcomes of children with complex congenital heart disease (Mahle, William and
Wernovsky, Gil, Clinics in Perinatology, March 2001, 235-246).
Neurodevelopmental
outcomes in hypoplastic left heart syndrome (Mahle, William and Wernovsky,
Gil, Pediatric Cardiac Surgery Annual of the Seminars in Thoracic and
Cardiovascular Surgery, 2004, 39-47).
Neurocognitive consequences of surgically
corrected congenital heart defects: a review (Miatton, M., et al., Neuropsychology
Review, 2006, 65-85).
Psychosocial outcomes for preschool children
and families after surgery for complex congenital heart disease
(Brosig,
C.L., et al., Pediatric Cardiology, 2007, 255-262).
The emerging recognition of school and behavior problems
in children with congenital heart defects (Wernovsky, Gil, et al.,
http://tchin.org, Congenital Heart Information Network, 2007).
Neurologic
and cognitive outcomes in children with congenital heart disease (Mahle,
William, Current Opinion in Pediatrics, 2001, 482-486).
Current
insights regarding neurological and developmental abnormalities in children and
young adults with complex congenital cardiac disease (Wernovsky, Gil,
Cardiol Young, 2006, 92-104).
Child and adolescent
QOL/long-term health with CHD/after organ transplantation
Understanding
the pathway between the transplant experience and health-related quality of
life outcomes in adolescents (Simons, LE, et al., Pediatric
Transplantation, 2008, 187-193).
In
my shoes: children’s quality of life after heart transplantation (Green, Angela, et
al., Progress in Transplantation, September 2007, 199-207).
Pediatric organ transplant patients and
long-term care (Waite, Eva and Laraque, Danielle, The Mount Sinai Journal of
Medicine, December 2006, 1148-1155).
Does family involvement and psychosocial
support influence coping in teenage populations who have congenital heart
disease
(Brown, Monica et al., Pediatric Nursing, September-October 2008, 405-417)?
Additional Research
Sources
In Sickness In Health Blog – this is a popular
blog for couples where one partner is chronically ill
How American Health Care Killed My Father: The Atlantic, September 2009
October 2009
Erin
Taylor/Jack Staley