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

Completed

• Conditions: Death
• Interventions: Other: Survey; Other: Focus group

• Registration Number: NCT00724646
• Lead Sponsor: Akron Children's Hospital

Brief 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.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2008-07-25
• Study First Submitted QC: 2008-07-28
• Study First Posted: 2008-07-29
• Study Start: 2009-02
• Primary Completion: 2009-04
• Study Completion: 2009-06
• Status Verified: 2009-09
• Last Update Submitted: 2009-09-14
• Last Update Posted: 2009-09-15

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 125

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

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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

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
1	Focus group	Habilitation assistants
2	Survey	Parents/ legal guardians
1	Survey	Habilitation assistants
2	Focus group	Parents/ legal guardians

Primary Outcome Measures

Name	Time	Method
Participants' responses to survey questions.	Start of Study

Secondary Outcome Measures

Name	Time	Method
Participants' responses to focus group discussions.	End of study

Trial Locations

Locations (1)

Hattie Larlham Center for Disabled Children; 🇺🇸 Mantua, Ohio, United States