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Factors influencing parent decision making about pediatric cardiac transplantation
1University of San Francisco School of Nursing, Children's Hospital of Oakland, California, USA.
Insights
Parental decisions about pediatric heart transplantation are influenced by emotional, familial, and social factors, alongside physician recommendations. Family beliefs and values often play a key role in these critical choices for children with heart disease.
Area of Science:
- Pediatric Cardiology
- Medical Decision-Making
- Qualitative Research
Background:
- Children with end-stage heart disease face complex treatment decisions.
- Pediatric heart transplantation is a critical but challenging option for these patients.
- Parental decision-making processes require thorough investigation.
Purpose of the Study:
- To explore factors influencing parental decisions regarding pediatric heart transplantation.
- To understand the multifaceted influences on parents considering this procedure for their children.
Main Methods:
- Prospective qualitative study design.
- In-depth interviews and participant observation with 24 parents of 15 children.
- Thematic coding and analysis of collected data until data saturation.
Main Results:
- Key influencing factors included psychological/emotional, familial, and social aspects.
- Physician endorsement significantly impacted treatment option selection.
- Family beliefs and values were primary decision drivers in 10 of 15 cases.
- Ten families opted for transplantation; five declined.
Conclusions:
- Parental decisions on pediatric heart transplantation are complex and influenced by a combination of personal, familial, and professional factors.
- Pediatric nurses are vital in supporting parent-health professional communication during these difficult decisions.
- Understanding these influences can improve support for families facing pediatric heart transplantation choices.
Abstract:
The purpose of this prospective qualitative study was to investigate factors that influenced 15 parental decision-making situations regarding pediatric heart transplantation for children with end-stage heart disease. Twenty-four parents of 15 children, ranging in age from 1 day to 16 years, who had been given the heart transplantation option were inducted into the study as a convenience sample. All 24 parents were either interviewed (n = 18) or observed at some point during the decision-making process. Data collection strategies included participant observation and in-depth interviews. Data were coded into relevant themes and then clustered into categories; concurrent coding and analysis continued until new categories were no longer found. Predominant factors identified that influenced parental decision making were (a) psychological/emotional, (b) familial, and (c) social factors, and (d) physician endorsement of a treatment option. In 10 of the 15 situations, family beliefs and values were the main parental decision-making factors. Ten families chose transplantation for their child; 5 decided against the procedure. Pediatric nurses have central roles in facilitating parent-health professional communication in complex decision making concerning treatment alternatives of children.
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