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

Akron Children's Hospital

Status

Completed

Conditions

Death

Treatments

Other: Focus group

Other: Survey

Study type

Observational

Funder types

Other

Identifiers

NCT00724646

End-of-Life Care

Details and patient eligibility

About

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.

Enrollment

125 estimated patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

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