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.
abstract: 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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Hattie Larlham Center for Children with Disabilities, Mantua, Ohio.
authors.forename: Richard I
authors.initials: RI
authors.lastname: Grossberg
authors.affiliation: Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH.
authors.forename: Martha
authors.initials: M
authors.lastname: Blackford
authors.affiliation: Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH.
authors.forename: Sarah
authors.initials: S
authors.lastname: Friebert
authors.affiliation: Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH.
authors.forename: Ethan
authors.initials: E
authors.lastname: Benore
authors.affiliation: Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Reed
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008134:Long-Term Care / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009741:Nursing Staff, Hospital / Q000523:psychology*; D009820:Ohio; D010290:Parents / Q000523:psychology*; D010371:Pediatric Nursing; D013727:Terminal Care / Q000523:psychology*; D055815:Young Adult