PALLIATIVE CARE SERVICES IN FAMILIES OF MALES WITH DUCHENNE MUSCULAR DYSTROPHY

被引：32

作者：

Arias, Rebeca ^{[1
,2
]}

Andrews, Jennifer ^{[1
,2
]}

Pandya, Shree ^{[3
]}

Pettit, Kathleen ^{[1
,2
]}

Trout, Christina ^{[4
]}

Apkon, Susan ^{[5
]}

Karwoski, Jane ^{[6
,7
]}

Cunniff, Christopher ^{[1
,2
]}

Matthews, Dennis ^{[8
,9
]}

Miller, Timothy ^{[1
,2
]}

Davis, Melinda F. ^{[10
]}

Meaney, F. John ^{[1
,2
]}

机构：

[1] Univ Arizona, Dept Pediat, Tucson, AZ 85724 USA

[2] Univ Arizona, Steele Res Ctr, Tucson, AZ 85724 USA

[3] Univ Rochester, Dept Neurol, Rochester, NY USA

[4] Univ Iowa, Dept Pediat, Iowa City, IA 52242 USA

[5] Seattle Childrens Hosp, Seattle, WA USA

[6] Oak Ridge Inst Sci & Educ, Atlanta, GA USA

[7] Ctr Dis Control & Prevent, Div Human Dev & Disabil, Natl Ctr Birth Defects & Dev Disabil, Atlanta, GA USA

[8] Univ Colorado, Sch Med, Dept Phys Med & Rehabil, Denver, CO USA

[9] Childrens Hosp, Denver, CO 80218 USA

[10] Univ Arizona, Dept Psychol, Tucson, AZ 85721 USA

来源：

MUSCLE & NERVE | 2011年 / 44卷 / 01期

关键词：

advance directives; Duchenne muscular dystrophy; health services model; healthcare barriers; palliative care; ACCULTURATION; PERCEPTIONS; SURVIVAL; DISEASE;

D O I：

10.1002/mus.22005

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

100204 [神经病学];

摘要：

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

引用

页码：93 / 101

页数：9

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