Palliative care services in families of males with Duchenne muscular dystrophy.
Muscle Nerve
; 44(1): 93-101, 2011 Jul.
Article
en En
| MEDLINE
| ID: mdl-21674523
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.
Texto completo:
1
Banco de datos:
MEDLINE
Asunto principal:
Cuidados Paliativos
/
Conocimientos, Actitudes y Práctica en Salud
/
Cuidadores
/
Distrofia Muscular de Duchenne
Tipo de estudio:
Qualitative_research
Límite:
Adolescent
/
Adult
/
Child
/
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Año:
2011
Tipo del documento:
Article