Overview

This trial is active, not recruiting.

Condition parental decision making for seriously ill children
Sponsor Children's Hospital of Philadelphia
Collaborator National Institute of Nursing Research (NINR)
Start date July 2010
End date November 2014
Trial size 358 participants
Trial identifier NCT01163136, 10-007447, 1R01NR012026-01

Summary

This study will look at a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings, to test whether parents with higher levels of hopeful patterns of thinking are subsequently more likely a) to change the "level of care" order status of their child (as an important and demonstrable example of adapting goals); b) to reprioritize goals for the child when they are reassessed regarding goals ; and c) to report a higher degree of achieving self-defined 'good parent' attributes.

United States No locations recruiting
Other Countries No locations recruiting

Study Design

Observational model cohort
Time perspective prospective

Primary Outcomes

Measure
Parents' reprioritized goals
time frame: up to 2 years

Secondary Outcomes

Measure
Parents' self-defined 'good parent' attributes
time frame: up to 2 years

Eligibility Criteria

Male or female participants at least 18 years old.

Inclusion Criteria: - Parents of children who are patients at The Children's Hospital of Philadelphia (CHOP) admitted to the neonatal, pediatric, or cardiac intensive care unit (NICU, PICU, or CICU), or who have been referred to the Pediatric Advanced Care Team (PACT) for palliative care services. A patient is eligible when the patient's attending physician considers it likely that parents will have major treatment decisions to make for their child within the coming 12 to 24 months. Exclusion Criteria: - Non English-speaking parents

Additional Information

Official title Decision Making in Serious Pediatric Illness
Principal investigator Chris Feudtner, MD, PhD, MPH
Description Parents making medical decisions for a child living with a life-threatening condition confront, sometimes repeatedly, an extremely daunting task: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life. This study will look at a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings, to test whether parents with higher levels of hopeful patterns of thinking are subsequently more likely a) to change the "level of care" order status of their child (as an important and demonstrable example of adapting goals); b) to reprioritize goals for the child when they are reassessed regarding goals ; and c) to report a higher degree of achieving self-defined 'good parent' attributes. We hypothesize that parents with higher levels of hopeful patterns of thinking subsequently will be: More likely to enact a limit of intervention order. More likely, upon explicit formal reassessment, to reprioritize goals for the child. More likely to report a higher degree of achieving self-defined 'good parent' attributes.
Trial information was received from ClinicalTrials.gov and was last updated in December 2015.
Information provided to ClinicalTrials.gov by Children's Hospital of Philadelphia.