Last data update: Mar 17, 2025. (Total: 48910 publications since 2009)
Records 1-1 (of 1 Records) |
Query Trace: Karwoski J[original query] |
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Palliative care services in families of males with Duchenne muscular dystrophy
Arias R , Andrews J , Pandya S , Pettit K , Trout C , Apkon S , Karwoski J , Cunniff C , Matthews D , Miller T , Davis MF , Meaney FJ . Muscle Nerve 2011 44 (1) 93-101 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. Muscle Nerve 44: 93-101, 2011. |
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