title: Palliative care services in families of males with Duchenne muscular dystrophy.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.
authors.affiliation: Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA.
authors.forename: Rebeca
authors.initials: R
authors.lastname: Arias
authors.forename: Jennifer
authors.initials: J
authors.lastname: Andrews
authors.forename: Shree
authors.initials: S
authors.lastname: Pandya
authors.forename: Kathleen
authors.initials: K
authors.lastname: Pettit
authors.forename: Christina
authors.initials: C
authors.lastname: Trout
authors.forename: Susan
authors.initials: S
authors.lastname: Apkon
authors.forename: Jane
authors.initials: J
authors.lastname: Karwoski
authors.forename: Christopher
authors.initials: C
authors.lastname: Cunniff
authors.forename: Dennis
authors.initials: D
authors.lastname: Matthews
authors.forename: Timothy
authors.initials: T
authors.lastname: Miller
authors.forename: Melinda F
authors.initials: MF
authors.lastname: Davis
authors.forename: F John
authors.initials: FJ
authors.lastname: Meaney
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology* / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D011795:Surveys and Questionnaires; D055815:Young Adult