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

NCT00724646 | Completed

• 1 other identifier: End-of-Life Care
• Study Type: observational
• Target: 125
• Locations: 1 country
• Sites: 1

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.

Conditions

Death

Keywords

parents; medically fragile; death; end-of-life care; surveys

Outcome Measures

Primary Outcomes (1)

• Participants' responses to survey questions.

  Start of Study

Secondary Outcomes (1)

• Participants' responses to focus group discussions.

  End of study

Study Arms (2)

1

Habilitation assistants

Other: Survey; Other: Focus group

2

Parents/ legal guardians

Other: Survey; Other: Focus group

Interventions

Survey OTHER

3 individual surveys

1; 2

Focus group OTHER

Focus group discussions facilitated by a psychologist

1; 2

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Parents/ legal guardians and habilitation assistants

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• Akron Children's Hospital: lead

Study Sites (1)

Hattie Larlham Center for Disabled Children

Mantua, Ohio, 44255, United States

Location

Related 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.

  PMID: 15332472 BACKGROUND

• 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.

  PMID: 11772185 BACKGROUND

• 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.

  PMID: 16689413 BACKGROUND

MeSH Terms

Conditions

Death

Interventions

Surveys and Questionnaires; Focus Groups

Condition Hierarchy (Ancestors)

Pathologic Processes; Pathological Conditions, Signs and Symptoms

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Richard Grossberg, MD

  Hattie Larlham Center for Disabled Children

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER

Study Record Dates

• First Submitted: July 25, 2008
• First Posted: July 29, 2008
• Study Start: February 1, 2009
• Primary Completion: April 1, 2009
• Study Completion: June 1, 2009
• Last Updated: September 15, 2009

Record last verified: 2009-09

Locations

US (1)