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

September 14, 2009 updated by: Akron Children's Hospital

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.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Anticipated)

125

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Ohio
      • Mantua, Ohio, United States, 44255
        • Hattie Larlham Center for Disabled Children

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

Parents/ legal guardians and habilitation assistants

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
1
Habilitation assistants
Other: Survey
3 individual surveys
Other: Focus group
Focus group discussions facilitated by a psychologist
2
Parents/ legal guardians
Other: Survey
3 individual surveys
Other: Focus group
Focus group discussions facilitated by a psychologist

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Participants' responses to survey questions.
Time Frame: Start of Study
Start of Study

Secondary Outcome Measures

Outcome Measure
Time Frame
Participants' responses to focus group discussions.
Time Frame: End of study
End of study

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Akron Children's Hospital

Investigators

  • Principal Investigator: Richard Grossberg, MD, Hattie Larlham Center for Disabled Children

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

February 1, 2009

Primary Completion (Actual)

April 1, 2009

Study Completion (Actual)

June 1, 2009

Study Registration Dates

First Submitted

July 25, 2008

First Submitted That Met QC Criteria

July 28, 2008

First Posted (Estimate)

July 29, 2008

Study Record Updates

Last Update Posted (Estimate)

September 15, 2009

Last Update Submitted That Met QC Criteria

September 14, 2009

Last Verified

September 1, 2009

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • End-of-Life Care

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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