NCT00724646

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

Direct Care Staff and Parents'/Legal Guardians' Perspectives on End-of-Life Care in a Long-Term Care Facility for Medically Fragile and Intellectually Disabled Pediatric and Young Adult Residents

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 125 (estimated)
• Sponsor: Akron Children's Hospital · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

Summary

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.

Conditions

• Death

Interventions

Type	Name	Description
OTHER	Survey	3 individual surveys
OTHER	Focus group	Focus group discussions facilitated by a psychologist

Timeline

• Start date: 2009-02-01
• Primary completion: 2009-04-01
• Completion: 2009-06-01
• First posted: 2008-07-29
• Last updated: 2009-09-15

Locations

1 site across 1 country: United States