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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

Published online by Cambridge University Press:  10 August 2012

Richard I. Grossberg ,
Martha Blackford ,
Sarah Friebert ,
Ethan Benore  and
Michael D. Reed
Richard I. Grossberg*
Affiliation:
Hattie Larlham Center for Children with Disabilities, Mantua, Ohio Department of Pediatrics, Case Western Reserve University School of Medicine and Rainbow Babies & Children's Hospital, Cleveland, Ohio
Martha Blackford
Affiliation:
Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH Division of Clinical Pharmacology & Toxicology and the Rebecca D Considine Research Institute, Children's Hospital Medical Center of Akron, Akron, OH
Sarah Friebert
Affiliation:
Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH Haslinger Family Pediatric Palliative Care Center, Children's Hospital Medical Center of Akron, Akron, OH
Ethan Benore
Affiliation:
Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH Neurodevelopmental Science Center, Children's Hospital Medical Center of Akron, Akron, OH
Michael D. Reed
Affiliation:
Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH Division of Clinical Pharmacology & Toxicology and the Rebecca D Considine Research Institute, Children's Hospital Medical Center of Akron, Akron, OH
*
Address correspondence and reprint requests to: Richard I. Grossberg, Hattie Larlham Center for Children with Disabilities, 9772 Diagonal Road, Mantua, Ohio 44255. E-mail: [email protected]
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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.

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.

Keywords

End of lifeLong-term carePediatricsMedically fragile persons
Type
Original Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 4 , August 2013 , pp. 307 - 314
Copyright
Copyright © Cambridge University Press 2012 

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References

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