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

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.

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