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

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.

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Key information

Conditions

Death Pathologic Processes Pathological Conditions, Signs and Symptoms

Sex eligibility

All sexes

Study type

Observational

Primary location

Hattie Larlham Center for Disabled Children

Mantua, Ohio, 44255, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Survey

Other

3 individual surveys

Focus Group

Other

Focus group discussions facilitated by a psychologist

Primary outcomes

Participants' responses to survey questions.

Time frame: Start of Study

Secondary outcomes

Participants' responses to focus group discussions.

Time frame: End of study

Sponsors and collaborators

Lead sponsor

Akron Children's Hospital

Other

Registry information

Official study title

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

Important dates

Study start: 2009
Primary completion: 2009
Study completion: 2009
First posted: Jul 29, 2008
Registry last updated: Sep 15, 2009

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed