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

This study has been completed.
Sponsor:
Information provided by:
Akron Children's Hospital
ClinicalTrials.gov Identifier:
NCT00724646
First received: July 25, 2008
Last updated: September 14, 2009
Last verified: September 2009
  Purpose

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.


Condition Intervention
Death
Other: Survey
Other: Focus group

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Retrospective
Official 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

Resource links provided by NLM:


Further study details as provided by Akron Children's Hospital:

Primary Outcome Measures:
  • Participants' responses to survey questions. [ Time Frame: Start of Study ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • Participants' responses to focus group discussions. [ Time Frame: End of study ] [ Designated as safety issue: No ]

Estimated Enrollment: 125
Study Start Date: February 2009
Study Completion Date: June 2009
Primary Completion Date: April 2009 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
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

  Eligibility

Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

Parents/ legal guardians and habilitation assistants

Criteria

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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00724646

Locations
United States, Ohio
Hattie Larlham Center for Disabled Children
Mantua, Ohio, United States, 44255
Sponsors and Collaborators
Akron Children's Hospital
Investigators
Principal Investigator: Richard Grossberg, MD Hattie Larlham Center for Disabled Children
  More Information

Publications:
Responsible Party: Richard Grossberg, MD, Hattie Larlham Center for Disabled Children
ClinicalTrials.gov Identifier: NCT00724646     History of Changes
Other Study ID Numbers: End-of-Life Care
Study First Received: July 25, 2008
Last Updated: September 14, 2009
Health Authority: United States: Institutional Review Board

Keywords provided by Akron Children's Hospital:
parents
medically fragile
death
end-of-life care
surveys

ClinicalTrials.gov processed this record on October 01, 2014