Decision Making in Serious Pediatric Illness (DSPI)

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.

Study Overview

• Status: Completed
• Conditions: Parental Decision Making for Seriously Ill Children

Detailed 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.

• Study Type: Observational
• Enrollment (Actual): 358

Contacts and Locations

Study Locations

• United States
  • Pennsylvania
    • Philadelphia, Pennsylvania, United States, 19104
      • The Children's Hospital of Philadelphia

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Parents of children of age < 18 years or cognitively impaired such that their parents make all medical decisions on their behalf; and of either gender and any race/ethnicity who are patients at The Children's Hospital of Philadelphia (CHOP) admitted to the neonatal, pediatric, or cardiac intensive care unit (CICU), neonatal intensive care unit (NICU), or pediatric intensive care unit (PICU), or who have been referred to the Pediatric Advanced Care Team (PACT) for palliative care services.

Description

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

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Parents' reprioritized goals	Parents, when interviewed every 4 months for up to 2 years, are asked what the goals of care are for their child, and if the priority of those goals has changed.	up to 2 years

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Parents' self-defined 'good parent' attributes	Parents, when interviewed every 4 months for up to 2 years, are asked how they assess their achievement of attributes of being a good parent to their ill child	up to 2 years

Collaborators and Investigators

• Sponsor: Children's Hospital of Philadelphia
• Collaborators: National Institute of Nursing Research (NINR)
• Investigators: Principal Investigator: Chris Feudtner, MD, PhD, MPH, Children's Hospital of Philadelphia

Study record dates

Study Major Dates

• Study Start: July 1, 2010
• Primary Completion (Actual): November 1, 2014
• Study Completion (Actual): June 1, 2017

Study Registration Dates

• First Submitted: July 13, 2010
• First Submitted That Met QC Criteria: July 14, 2010
• First Posted (Estimate): July 15, 2010

Study Record Updates

• Last Update Posted (Actual): October 3, 2017
• Last Update Submitted That Met QC Criteria: September 29, 2017
• Last Verified: September 1, 2017

More Information

Terms related to this study

• Keywords: Parental decision making; Decision Making in Serious Pediatric Illness (DSPI); palliative care decision making
• Other Study ID Numbers: 10-007447; 1R01NR012026-01 (U.S. NIH Grant/Contract)