Perspectives on End-of-Life Care for Medically-Fragile Children and Young Adults

Completed

Conditions studied: Death

In brief

Hattie Larlham is a specialized long-term care facility for pediatric and young adult residents who are medically fragile and intellectually disabled, whose daily care is provided by direct care staff, Habilitation Assistants (HA), in conjunction with nurses and other direct care providers. The purpose of this study is to assess the perspectives of HA and parents/legal guardians on end-of-life care in a long-term care facility for pediatric and young adult residents who are medically fragile and intellectually disabled.

Key facts

Study ID

NCT00724646

Run by

Akron Children's Hospital

People needed

125

Starts

2009-02-01

Expected to finish

2009-06-01

Last updated by the study team

2009-09-15

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• HA at Hattie Larlham between January 1, 2006 to present
• HA provided care to > 1 resident whose death occurred between January 1, 2006 through the end of the study period
• HA provided ongoing care to the resident for at least 5 days in the last 30 days at Hattie Larlham before the resident's death
• Parent/legal guardian of a Hattie Larlham resident whose death occurred between January 1, 2006 through the end of the study

You may not qualify if…

• HA employed < 30 days at Hattie Larlham or cared for resident <5 days in last 30 days prior to the resident's death
• HA or parent/legal guardian who has not experienced a Hattie Larlham resident's death since December 31, 2005

Where it is running

• Hattie Larlham Center for Disabled Children — Mantua, Ohio, United States

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.