Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences

Abstract

Critical heart disease in the pediatric population is associated with high morbidity and mortality. Research around the most effective communication and decision-making strategies is lacking. This systematic review aims to summarise what is known about parent preference for communication and decision-making in children with critical heart disease. Database searches included key words such as family, pediatric heart disease, communication, and decision-making. A total of 10 studies fit our inclusion criteria: nine were qualitative studies with parent interviews and one study was quantitative with a parent survey. We found three main themes regarding physician-parent communication and decision-making in the context of paediatric heart disease: (1) amount, timing, and content of information provided to parents; (2) helpful physician characteristics and communication styles; and (3) reinforcing the support circle for families.

Provider insights on shared decision-making with families affected by CHD

“…Many previous studies have focused on parent perspectives on shared decision-making and communication. 9,20,21 While we found that providers perceived a discrepant parental focus on short-term compared to the providers' emphases on long-term outcomes, previous work has highlighted parents' desire for more information related to long-term outcomes. Further, Arya et al found that parents rated information on quality of life as significantly more important than providers did.…”

“…The nuances of CHD diagnoses and statistics related to outcomes can be difficult to convey at baseline and exacerbated if there are language, literacy, or numeracy barriers. Balancing the details versus the big picture can be challenging since parents have previously expressed a desire for more information than clinicians may provide, 9,22 with the caveat that the amount of information can be overwhelming and requires repetition. Previous work has found that the amount and manner in which this information is conveyed may be related to provider subspecialty.…”

“…7 There has been increasing attention on eliciting parental perspectives to improve counselling and shared decisionmaking. [8][9][10][11][12] However, there has been less investigation of provider perspectives on counselling and shared decision-making, particularly barriers and ways to support best practices. 13 Eliciting provider insights is necessary since optimal shared decisionmaking is by its very nature a collaborative endeavour between providers and patients particularly in such high stakes discussions such as these.…”