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Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent
Robert J Graham1, Dvora M Pemstein, Martha A Q Curley
1Department of Anesthesiology, Perioperative and Pain Medicine, Division of Critical Care, Children's Hospital Boston, Boston, MA, USA. Robert.Graham@childrens.harvard.edu
Insights
Parents of children with severe disabilities experience pediatric intensive care unit (PICU) hospitalizations uniquely. Understanding their perspective is crucial for improving care and support during critical illness.
Area of Science:
- Pediatric critical care medicine
- Parental experiences in healthcare
- Childhood disability and healthcare access
Background:
- Hospitalization in a pediatric intensive care unit (PICU) presents unique challenges for families.
- Children with severe antecedent disabilities require specialized care and support during critical illness.
- Parental perspectives are vital for understanding and improving the healthcare experience for these children.
Purpose of the Study:
- To explore the experiences of parents whose children with severe antecedent disabilities were hospitalized in a PICU.
- To identify key themes and challenges faced by parents during their child's PICU admission.
- To provide insights for enhancing care and support for families in pediatric critical care settings.
Main Methods:
- Qualitative study utilizing semistructured interviews with parents.
- Interviews conducted during or immediately after PICU admission until data saturation.
- Analysis of data from eight parents of children with severe antecedent disabilities.
Main Results:
- Seven major themes emerged: understanding the child's baseline, integrating services, role disconnect, PICU not being respite, high-stakes learning, group heterogeneity, and poor fit with acute care models.
- Effective communication and mutuality in parent-professional relationships were identified as critical.
- Parents highlighted the need for better integration of care and recognition of their unique role.
Conclusions:
- Children with severe disabilities and their parents have a profound connection to critical care services.
- Findings can inform clinicians to better understand parental perspectives and improve care.
- Critical care structures, processes, and communication models require tailoring to meet parental needs and expectations.
Objective:
To describe the experience of pediatric intensive care hospitalization from the perspective of a parents of children with severe, antecedent disability.
Design:
Qualitative analysis of data obtained through semistructured interviews.
Setting:
Pediatric intensive care unit (PICU) in a children's hospital.
Subjects:
Parents of eight children admitted to the PICU with severe antecedent disabilities.
Interventions:
None.
Measurements And Main Results:
Data were collected between May and July 2006. Parents were interviewed during, or just after, PICU admission until data saturation was achieved. Seven major themes emerged from analysis: 1) know my child's baseline; 2) integrate and bridge multiple services; 3) disconnect between role of parent at home versus parent in the PICU; 4) a PICU admission does not equate with respite; 5) high stakes learning environment; 6) heterogeneity within group; and 7) lack of fit within the acute care model. The need for stellar communication and mutuality within the parent-professional relationship were common conceptual threads through all interviews.
Conclusions:
Children with severe antecedent disabilities and their parents are inextricably linked with critical care services. Study results provide data that can be used to help clinicians better understand the perspectives of these parents and also help guide interventions to improve care and support. Although communication is essential, the structure and processes of critical care including rounding format, continuity in management, and mutual participation models should be tested and tailored to better meet parental needs and expectations.
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