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Decision Making in Serious Pediatric Illness

Decision Making in Serious Pediatric Illness

Status
Completed
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT01163136
Acronym
DSPI
Enrollment
358
Registered
2010-07-15
Start date
2010-07-31
Completion date
2017-06-30
Last updated
2017-10-03

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Parental Decision Making for Seriously Ill Children

Keywords

Parental decision making, Decision Making in Serious Pediatric Illness (DSPI), palliative care decision making

Brief 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.

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.

Interventions

None listed

Sponsors

National Institute of Nursing Research (NINR)
CollaboratorNIH
Children's Hospital of Philadelphia
Lead SponsorOTHER

Study design

Observational model
COHORT
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No

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

Design outcomes

Primary

MeasureTime frameDescription
Parents' reprioritized goalsup to 2 yearsParents, 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.

Secondary

MeasureTime frameDescription
Parents' self-defined 'good parent' attributesup to 2 yearsParents, 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

Countries

United States

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026