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Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease
Mary Katherine Miller1, Elizabeth D Blume2, Chase Samsel3
1Department of Cardiology, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA, 02115, USA.
Insights
Effective communication is crucial for parents making decisions about their child's advanced heart disease care. However, many parents receive conflicting information, impacting their preparedness.
Area of Science:
- Pediatric Cardiology
- Healthcare Communication
- Patient Decision-Making
Background:
- Parent-provider communication is vital for children with advanced heart disease.
- Effective communication supports informed decision-making in pediatric cardiac care.
Purpose of the Study:
- To explore parental perceptions of communication with healthcare providers for hospitalized children with advanced heart disease.
- To identify factors influencing communication effectiveness and parental preparedness for decision-making.
Main Methods:
- Prospective survey study involving 160 parent-provider pairs of children (30 days to 19 years) hospitalized for over 7 days.
- Descriptive statistics, Fisher exact tests, and kappa statistics were used to analyze communication agreement and perceptions.
Main Results:
- While all parents rated communication positively, 56% reported receiving conflicting information.
- Perceiving "too many" providers was linked to poorer communication and less preparedness.
- A significant minority (32%) felt unprepared for decisions, despite feeling supported (88%).
- Poor agreement existed between parents and physicians regarding communication adequacy and information delivery.
Conclusions:
- Interventions focusing on physician communication training are recommended.
- Proactively assessing parental communication preferences can enhance decision-making support.
- Addressing conflicting information and provider communication overload is essential in pediatric cardiac care.
Abstract:
Communication between parents and providers of children with cardiac disease is essential to parental decision-making. This study explored how parents of hospitalized children with advanced heart disease perceived communication with their child's providers. We performed a prospective survey study of parents and physicians of children with advanced heart disease age 30 days to 19 years admitted to the hospital for > 7 days over a 1-year period at a single institution (n = 160 parent-provider pairs). Descriptive statistics were primarily used and Fisher exact tests and kappa statistics were used to assess agreement. All parents rated communication with their child's care team as excellent, very good, or good, but 56% of parents reported having received conflicting information. Parental perception of "too many" people giving them information was associated with overall poorer communication and less preparedness for decision-making. One-third (32%) of parents felt unprepared for decision-making, despite 88% feeling supported. Parents and physicians showed poor agreement with respect to overall adequacy of communication, receipt of conflicting information, and evaluation of the most effective way for parents to receive information. Interventions involving physician communication training and proactive assessment of parent communication preferences may be beneficial.
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