Perspectives on End-of-Life Care for Medically-Fragile Children and Young Adults
NCT ID: NCT00724646
Last Updated: 2009-09-15
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
125 participants
OBSERVATIONAL
2009-02-28
2009-06-30
Brief Summary
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Detailed Description
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Conditions
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Study Design
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COHORT
RETROSPECTIVE
Study Groups
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1
Habilitation assistants
Survey
3 individual surveys
Focus group
Focus group discussions facilitated by a psychologist
2
Parents/ legal guardians
Survey
3 individual surveys
Focus group
Focus group discussions facilitated by a psychologist
Interventions
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Survey
3 individual surveys
Focus group
Focus group discussions facilitated by a psychologist
Eligibility Criteria
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Inclusion Criteria
* 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 or parent/legal guardian who has not experienced a Hattie Larlham resident's death since December 31, 2005
ALL
No
Sponsors
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Akron Children's Hospital
OTHER
Responsible Party
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Hattie Larlham Center for Disabled Children
Principal Investigators
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Richard Grossberg, MD
Role: PRINCIPAL_INVESTIGATOR
Hattie Larlham Center for Disabled Children
Locations
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Hattie Larlham Center for Disabled Children
Mantua, Ohio, United States
Countries
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References
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Brazil K, McAiney C, Caron-O'Brien M, Kelley ML, O'Krafka P, Sturdy-Smith C. Quality end-of-life care in long-term care facilities: service providers' perspective. J Palliat Care. 2004 Summer;20(2):85-92.
Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002 Jan;156(1):14-9. doi: 10.1001/archpedi.156.1.14.
Vohra JU, Brazil K, Szala-Meneok K. The last word: family members' descriptions of end-of-life care in long-term care facilities. J Palliat Care. 2006 Spring;22(1):33-9.
Other Identifiers
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End-of-Life Care
Identifier Type: -
Identifier Source: org_study_id
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