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

Abstract

Background and Objectives: Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making. Methods: We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach. Results: Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds. Conclusions: Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association

“…[137][138][139] Using primary palliative care principles to understand family goals of care will help navigate the complexity of each family's capacity and need for different levels of detail. 132,138 Awareness of center-based practice variation and individual clinician bias is also important. For example, although rates of termination and fetal loss are as high as 79% 144 for hypoplastic left heart syndrome, many centers recommend surgical palliation as standard care.…”

American Heart Association's Children's Strategically Focused Research Network Experience

“…Specifically, the Population Science project leaders successfully coordinated and conducted 10 focus groups with parents and 31 semistructured interviews with congenital heart defects practitioners across all participating Children's SFRN sites, identifying the informational needs, outcome priorities, and decision aid preferences of parents and clinicians. 2 , 4 Religious/spiritual beliefs and quality of life considerations factored prominently in individual family's approach to decision making. 2 Challenges to making clinical decisions included inconsistent communication of options by providers, the urgency of arriving at a decision, and the difficulty in processing complex information at a stressful time for families.…”

“…Nearly a century after AHA began and half a century after commissioning of Cardiovascular Disease in the Young, the Children's Strategically Focused Research Network (SFRN) was established to apply state‐of‐the‐art basic, clinical, and population science strategies and train the next generation of pediatric cardiology scientists while still embodying Cardiovascular Disease in the Young's original focus on RHD, CHD, and preventive cardiology. The Children's SFRN directly and proudly builds on work done by the early pioneers in of pediatric cardiovascular science within AHA in the 1940s and 1950s.This article highlights the hypotheses, goals, accomplishments, challenges, and future directions of each center; provides an overview of collaboration efforts (Table 1 ) 1 , 2 , 3 , 4 and trainee accomplishments (Table 2 ) 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 ; and summarizes how we can leverage the output of this SFRN to advance pediatric cardiovascular science.…”

Study protocol for a randomised clinical trial of a decision aid and values clarification method for parents of a fetus or neonate diagnosed with a life-threatening congenital heart defect

“…We used data from focus groups of parents who had a fetus/neonate diagnosed with a complex CHD, as well as semistructured interviews with family and provider stakeholders to identify important content to include in the digital decision aid. 27 28 The tool was developed through an iterative process of content drafting by the development team followed by multiple rounds of content review and revision with the research team, parent partners, and healthcare providers in relevant fields (eg, paediatric cardiologists, surgeons, social workers, palliative care experts). The team gathered stories about parents’ experiences during several individual and group interviews.…”