Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions

Abstract

Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.

Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review

“…Will caregivers perception of communication and decision-making improve with earlier PGOCC? Shared decision-making is complex and although we believe earlier and more transparent PGOCCs may lead to goal-concordant care, these conversations may not influence caregiver decision-making in the way we expect (89).…”

Communication challenges: perioperative risks and care directives

“…Strategies employed by providers that left parents feeling supported included: establishing care teams that met their child's complex needs; encouraging participation in their child's health care and team rounds; including them in the development of care plans in the hospital's electronic medical record; acknowledging and fostering hope; and using pictures/drawings to assist understanding of their child's condition [15]. Many parents preferred direct and definitive communication from their provider to enhance hope and support their decision-making.…”

“…A qualitative, descriptive, prospective study was performed longitudinally to determine how hope affects decision-making of parents with children diagnosed with complex life-threatening chronic conditions (33% had complex cardiac conditions) [15]. Koch et al found that communication plays a critical role in decision-making for parents of children with complex CHD and was integrally tied to hope.…”

“…When opinions based on emotions became a basis for judgment, relationships and communication between providers and parents became less positive and detrimental to hope and shared decision-making. It is critical that providers support realistic hope and empower parents of hospitalized children with complex life-threatening chronic conditions by engaging in nonjudgmental, honest, early communication [15]. Recognizing that disease-directed care and palliative care can occur in parallel is an important step in facilitating these challenging conversations.…”