Palliative care services in families of males with Duchenne muscular dystrophy

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

Research output: Contribution to journalArticle

24 Scopus citations

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. Thirtyfour 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.

Original languageEnglish (US)
Pages (from-to)93-101
Number of pages9
JournalMuscle and Nerve
Volume44
Issue number1
DOIs
StatePublished - Jul 2011

Keywords

  • Advance directives
  • Duchenne muscular dystrophy
  • Health services model
  • Healthcare barriers
  • Palliative care

ASJC Scopus subject areas

  • Physiology
  • Clinical Neurology
  • Cellular and Molecular Neuroscience
  • Physiology (medical)

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    Arias, R., Andrews, J., Pandya, S., Pettit, K., Trout, C., Apkon, S., Karwoski, J., Cunniff, C., Matthews, D., Miller, T., Davis, M. F., & John Meaney, F. (2011). Palliative care services in families of males with Duchenne muscular dystrophy. Muscle and Nerve, 44(1), 93-101. https://doi.org/10.1002/mus.22005