1 40 1 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. URL Address <a href="http://doi.org/10.1017/S1478951512000326" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951512000326</a> Pages 307–314 Issue 4 Volume 11 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 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. Publisher An entity responsible for making the resource available Palliative & supportive care Date A point or period of time associated with an event in the lifecycle of the resource 2013 2013-08 Subject The topic of the resource Adolescence; Adolescent; Adult; Aged; Caregivers – Psychosocial Factors; Caregivers/*psychology; Child; Clinical Assessment Tools; Disabled – Psychosocial Factors; Disabled Children/*psychology; Female; Hospital – Psychosocial Factors; Hospital/*psychology; Human; Humans; Impact of Events Scale; Infant; Long Term Care – Psychosocial Factors; Long-Term Care/*psychology; Male; Middle Age; Middle Aged; Newborn; Nursing Staff; Ohio; Parents – Psychosocial Factors; Parents/*psychology; Pediatric Nursing; Preschool; Scales; Terminal Care – Psychosocial Factors; Terminal Care/*psychology; Young Adult Creator An entity primarily responsible for making the resource Grossberg Richard I; Blackford Martha; Friebert Sarah; Benore Ethan; Reed Michael D Description An account of the resource OBJECTIVE: Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians. METHOD: Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents. RESULTS: Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support. SIGNIFICANCE OF RESULTS: Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/S1478951512000326" target="_blank" rel="noreferrer noopener">10.1017/S1478951512000326</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. All rights are retained by the journal listed under publisher and/or the creator(s). 2013 Adolescence Adolescent Adult Aged Benore Ethan Blackford Martha Caregivers – Psychosocial Factors Caregivers/*psychology Child Clinical Assessment Tools Disabled – Psychosocial Factors Disabled Children/*psychology Female Friebert Sarah Grossberg Richard I Hospital – Psychosocial Factors Hospital/*psychology Human Humans Impact of Events Scale Infant Long Term Care – Psychosocial Factors Long-Term Care/*psychology Male Middle Age Middle Aged Newborn Nursing Staff Ohio Palliative & supportive care Parents – Psychosocial Factors Parents/*psychology Pediatric Nursing Preschool Reed Michael D Scales Terminal Care – Psychosocial Factors Terminal Care/*psychology Young Adult