Parenting under Pressure: a grounded theory of parenting young children with life‐threatening congenital heart disease

Abstract

In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

Analysis of the psychosocial impact of caretaking on the parents of an infant with severe congenital heart defect

“…Too often, there is little emphasis on explaining to parents, in lay terms, the condition of their child 14. This barrier between the medical world and the parents who must care for their sick child can be a major source of anxiety 10 12.…”

Developmentally Supportive Care in Congenital Heart Disease: A Concept Analysis

“…Teaching parents to recognize and interpret subtle infant behavioral cues to their environment allows parents to be more responsive and reduces parental stress. Parents of children with CHD often report tremendous family stress associated with the care of child with CHD, and these phases of stress response are overlapping and re-emerging as their child's condition changes over time (Rempel, Ravindran, Rogers, & Magill-Evans, 2013). Because DSC is family-centered and both empowers and support parents, the functioning of the family overall is supported.…”

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

“…Clinically significant stress levels would identify parents that would likely benefit from psychological and educational interventions. (5,18,26,40) These interventions may include counselling, parent education, active listening and the provision of anticipatory guidance, teaching of coping skills and developing strategies for accessing social support within parents' families and communities, and parent support groups have all been found to mediate stress and anxiety. (7,15,17,38,39) The PSI-SF has been used in several studies to determine parenting stress in children with CHD, and has been found to be a valid and reliable measure.…”

“…(25,41,(46)(47)(48) A family's ability to come to terms with their child's cardiac diagnosis, and to then make the necessary lifestyle adjustments it demands, plays an important role in the outcome of the child with CHD, (1,7,15,38,39) currently driving interest into the impact of a child's CHD on parents' psychological health and parenting experiences. (2,5,12,26) The aim of this study was to determine stress in parents of children with CHD who had undergone cardiac surgery in central South Africa. to indicate the extent to which they agree or disagree with each statement, where "strongly agree" is scored a 5, and "strongly disagree" a 1.…”

“…(4) Raising a child with CHD has been described as "parenting under pressure", (5) and many parents find the experience to be a challenge. (6)(7)(8)(9) Research findings on parenting stress outcomes in children with CHD are conflicting, with some investigators reporting that parents experienced higher levels of stress, (1,6,7,10,11) whilst others have found stress levels to be similar to those experienced by parents of healthy children; in fact, in some instances parents of children with CHD have even reported lower stress levels than parents of healthy children.…”