Death
Conditions
Keywords
parents, medically fragile, death, end-of-life care, surveys
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.
Interventions
OTHERSurvey
3 individual surveys
OTHERFocus group
Focus group discussions facilitated by a psychologist
Sponsors
Akron Children's Hospital
Study design
Observational model
COHORT
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Participants' responses to survey questions. | Start of Study |
Secondary
| Measure | Time frame |
|---|---|
| Participants' responses to focus group discussions. | End of study |
Countries
United States
Outcome results
None listed