Parental stress and resilience in CHD: a new frontier for health disparities research

Abstract

Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child's illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study

“…[51][52][53][54][55] Parental stress, in turn, is associated with decreased physical and psychological wellbeing in both children and their parents. [56][57][58] Indeed, parental stress can have greater effect on quality of life for children with CHD than their illness severity. [59][60][61][62] Consistent with Merle Mishel's uncertainty in illness theory, 63,64 when faced with uncertainty from a prenatal diagnosis of CHD, parents searched for information to reduce the uncertainty as well as for strategies to cope with it.…”

Neurodevelopmental Outcomes Among Children With Congenital Heart Disease: At-Risk Populations and Modifiable Risk Factors

“…Parental stress and mental health is becoming recognized as an important factor influencing child health and neurodevelopmental outcomes. 36 Importantly, parental mental health has shown to more strongly predict child behavioral adjustment than other physiologic or surgical factors. 37 In particular, parents of children with cCHD are at higher risk of mental health problems.…”

Defining a new normal: A qualitative exploration of the parent experience during the single ventricle congenital heart disease interstage period

“…This trauma arises as an emotional response to watching their infant receive life‐sustaining care (Muscara et al., 2015). A parent's mental health is important in its own right, and it is crucial for the impact it can have on an infant's quality of life, since the parent's capacity for bonding, coping, and meeting challenges with confidence may be at stake (Lisanti, 2018). There is a paucity of evidence regarding how parents experience their infants' care transitions out of the hospital to home monitoring during the interstage of SVCHD.…”