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

Death Clinical Trial

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT00724646
• Other study ID #: End-of-Life Care
• Status: Completed
• Phase: N/A
• First received: July 25, 2008
• Last updated: September 14, 2009
• Start date: February 2009
• Est. completion date: June 2009

Study information

• Verified date: September 2009
• Source: Akron Children's Hospital
• Contact: n/a
• Is FDA regulated: No
• Health authority: United States: Institutional Review Board
• Study type: Observational

Clinical Trial 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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 125
• Est. completion date: June 2009
• Est. primary completion date: April 2009
• Accepts healthy volunteers: No
• Gender: Both
• Age group: N/A and older

Eligibility

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 Design

Observational Model: Cohort, Time Perspective: Retrospective

Related Conditions & MeSH terms

• Death

Intervention

Other:
• Survey
3 individual surveys
• Focus group
Focus group discussions facilitated by a psychologist

Locations

Country	Name	City	State
United States	Hattie Larlham Center for Disabled Children	Mantua	Ohio

Sponsors (1)

Lead Sponsor	Collaborator
Akron Children's Hospital

Country where clinical trial is conducted

United States, 

References & Publications (3)

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. — View Citation

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. — View Citation

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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Participants' responses to survey questions.		Start of Study	No
Secondary	Participants' responses to focus group discussions.		End of study	No