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Palliative care services in families of males with duchenne muscular dystrophy

Authors

  • Rebeca Arias BA,

    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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  • Jennifer Andrews MBA,

    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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  • Shree Pandya DPT,

    1. Department of Neurology, University of Rochester, Rochester, New York, USA
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  • Kathleen Pettit MA,

    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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  • Christina Trout MSN,

    1. Department of Pediatrics, University of Iowa, Iowa City, Iowa, USA
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  • Susan Apkon MD,

    1. Seattle Children's Hospital, Seattle, Washington, USA
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  • Jane Karwoski PhD,

    1. Oak Ridge Institute for Science and Education Fellowship Program, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA
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  • Christopher Cunniff MD,

    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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  • Dennis Matthews MD,

    1. Department of Physical Medicine and Rehabilitation, University of Colorado School of Medicine and Children's Hospital, Denver, Colorado, USA
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  • Timothy Miller MD,

    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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  • Melinda F. Davis PhD,

    1. Department of Psychology, University of Arizona, Tucson, Arizona, USA
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  • F. John Meaney PhD

    Corresponding author
    1. Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
    • Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA
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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. Muscle Nerve 44: 93–101, 2011

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