Palliative care services in families of males with Duchenne muscular dystrophy.

Abstract

INTRODUCTION:

Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD).

METHODS:

The objective of this study was to describe the palliative care services that families of males with DMD report they receive. A questionnaire was administered to families of males with DMD born prior to January 1, 1982. Thirty-four families responded.

RESULTS:

Most families (85%) had never heard the term palliative care. Only attendant care and skilled nursing services showed much usage, with 44% and 50% indicating receipt of these services, respectively. Receipt of other services was reported less frequently: pastoral care (27%); respite care (18%); pain management (12%); and hospice care (6%). Only 8 respondents (25%) reported having any type of directive document in place.

CONCLUSION:

The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.

• Authors: Rebeca Arias, Jennifer Andrews, Shree Pandya, Kathleen Pettit, Christina Trout, Susan Apkon, Jane Karwoski, Christopher Cunniff, Dennis Matthews, Timothy Miller, Melinda F Davis, F John Meaney
• Journal: Muscle & nerve (Muscle Nerve) Vol. 44 Issue 1 Pg. 93-101 (Jul 2011) ISSN: 1097-4598 [Electronic] United States
• PMID: 21674523 (Publication Type: Comparative Study, Journal Article, Research Support, U.S. Gov't, P.H.S.)
• Copyright: Copyright © 2011 Wiley Periodicals, Inc.

Topics

• Adolescent
• Adult
• Caregivers (psychology)
• Child
• Female
• Health Knowledge, Attitudes, Practice
• Humans
• Male
• Middle Aged
• Muscular Dystrophy, Duchenne (psychology, therapy)
• Palliative Care (methods)
• Surveys and Questionnaires
• Young Adult