Preparing Family Caregivers to Make Medical Decisions for Their Loved Ones

Completed · Not applicable

Conditions studied: Neoplasms, Heart Failure, Kidney Diseases, Lung Diseases

In brief

The overarching goal of the project is to improve the process and experience of surrogate decision-making by family caregivers. Since feeling unprepared to make surrogate decisions is a major contributor to caregiver stress, the primary outcome is caregiver self-efficacy --i.e., caregivers' assessment of how well prepared they feel to serve effectively as a surrogate decision-maker. Through follow-on Renewal funding, we are now also qualitatively examining family caregivers' experience with surrogate decision-making.

Key facts

Study ID

NCT02429479

Run by

Milton S. Hershey Medical Center

People needed

285

Starts

2013-06-01

Expected to finish

2021-06-30

Last updated by the study team

2024-01-26

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 18 years of age or older
• Diagnosis of kidney disease (e.g. chronic kidney disease, end stage renal disease ) OR advanced cancer (Stage IV disease or having an estimated survival of <2 years) OR severe heart failure (e.g. New York Heart Assoc. Class III or Class IV) OR severe lung disease (e.g. Stage III or Stage IV COPD by modified GOLD Spirometric Classification, Idiopathic Pulmonary Fibrosis).
• Able to read and understand English at an 8th grade level (word 26 on either blue or tan version of the WRAT-3 reading subtest)
• Neuro-cognitively able to engage in ACP (Mini Mental State Exam (MMSE) score >23)
• No active suicidal ideations (i.e., score of 0 or 1 on item 9 of the BDI-II).

You may not qualify if…

• Failure on any of the above inclusion criteria.

Where it is running

• Brigham & Women's Hospital — Boston, Massachusetts, United States
• Penn State Milton S. Hershey Medical Center / Penn State College of Medicine — Hershey, Pennsylvania, United States

Full record on ClinicalTrials.gov

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