Psychological Distress Experienced by Parents of Young Children With Congenital Heart Defects: A Comprehensive Review of Literature

Abstract

The purpose of this study was to examine the existing research on the psychological distress experienced by parents whose young children (between the ages of 0 and 5 years old) have a congenital heart defect (CHD). A more detailed understanding of the distress experienced by these parents, including stress associated with the child's age, the severity of the child's diagnosis, and parent characteristics, is vital as it would allow for more targeted and individualized support for this population to enhance parental coping strategies and increase the likelihood of more positive parent-child interactions. This review of 25 studies contributes to the parenting stress literature by focusing on parents of young children and categorizing studies by publication characteristics, research methodology, and findings. The research clearly demonstrates that parents report a great deal of stress throughout the continuum of their child's health care experience. Recommendations for future research and practice implications, such as developing a stress vulnerability model specific to parenting children with CHD, clarifying the role between interdisciplinary team members regarding provision of psychosocial support to parents, and referring parents to specific community-based ongoing social support services, are presented.

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

“…(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. It has been suggested that these parents have likely developed a higher threshold for what they perceive to be stressful due to their experiences with their child with CHD.…”

“…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.…”

“…(2,7,23,24) Caring for a child with CHD also places considerable financial strain on families. (2,14,15,18,24) For many parents the chronic health problems faced by their child place them at a high risk of experiencing ongoing stress. (1,17,27) The effects of these ongoing stressors accumulate over time, and affect parents' ability to adapt, undermining their own health and wellbeing, as well as their family's functioning.…”

“…(27,28) Consequently, these parents may develop psychological problems, including anxiety and depression. (1,7,12,17,18,27) The stress experienced by parents of young children with CHD in South Africa is unknown. South Africa is classified as a developing country based on its degree of economic development, level of industrialisation, infrastructure and general standard of living.…”

“…Moreover, some children with CHD may also exhibit excessive irritability and behavioural difficulties that make them more difficult to parent. (10,19) In addition, approximately 30% of children with CHD may also have been born with a genetic disorder or syndrome, including Down syndrome (DS), which presents additional parenting challenges. (20)(21)(22) Caring for a child with CHD increases the burden of care and role-related stress experienced, especially by mothers, who tend to fulfil the role of primary caregiver.…”