SEARCH

SEARCH BY CITATION

References

  • 1
    Sach, Associates . Future service directions review 2003 . Melbourne : Motor Neurone Association of Victoria , 2003 .
  • 2
    AounS . The Hardest Thing We Have Ever Done: The Social Impact of Caring for Terminally Ill People in Australia 2004: Full Report of the National Inquiry into the Social Impact of Caring for Terminally Ill People . Canberra : Palliative Care Australia , 2004 .
  • 3
    GrandeG , StajduharK , AounS et al. Supporting lay carers in end of life care: current gaps and future priorities . Palliative Medicine , 2009 ; 23 : 339344 .
  • 4
    HowarthG . The social context of death and old age . Working with older people , 2007 ; 11 : 1720 .
  • 5
    SealeC . Constructing Death . Cambridge : Cambridge University Press , 1998 .
  • 6
    AriesP . The reversal of death: changes in attitudes towards death in western societies . In : StannardDE ( ed .) Death in America . Philadelphia, PA : University of Pennsylvania Press , 1975 .
  • 7
    Kubler-RossE . On Death and Dying . New York : Macmillan , 1969 .
  • 8
    Department of Health . End of Life Care Strategy . London : NHS , 2008 . Available at: http://www.endoflifecareforadults.nhs.uk/publications/eolc-strategy. accessed on 16 February 2012 .
  • 9
    FinlayI . The art of medicine: dying and choosing . The Lancet , 2009 ; 373 : 18401841 .
  • 10
    GrahamM . Euthanasia ban not a pressing concern: Abbott , 2010 . Available at: http://www.abc.net.au/news/stories/2010/09/19/3015943.htm, accessed 6 January 2011 .
  • 11
    SeymourJ , AlmackK , KennedyS . Implementing advance care planning: a qualitative study of community nurses’ views and experiences . BMC Palliative Care , 2010 ; 9 : 4 .
  • 12
    Respecting Patient Choices. Advance care planning in Australia. Heidelburg , 2010 . Available at: http://www.respectingpatientchoices.org.au/index.php?option=com_content&view=article&id=22&Itemid=23. accessed 29 November 2010 .
  • 13
    KellehearA . Health Promoting Palliative Care . Oxford : Oxford University Press , 1999 .
  • 14
    RosenbergJP , YatesP . Health promotion in palliative care: the case for conceptual congruence . Critical Public Health , 2010 ; 30 : 201210 .
  • 15
    ThomasK . Care for the Dying at Home . Abingdon : Radcliffe Medical Press , 2004 .
  • 16
    National Health Service . Enabling a gold standard of care for all people nearing the end of life . Brownhills, Walsall , 2010 . Available at: http://www.goldstandardsframework.nhs.uk/, accessed 24 November 2010 .
  • 17
    Department of Health . End of Life Care Strategy . London , 2008 . Available at: http://www.endoflifecareforadults.nhs.uk/publications/eolc-strategy, accessed 16 February 2012 .
  • 18
    BriggsL . Shifting the focus of advance care planning: using an in-depth interview to build and strengthen relationships . Journal of Palliative Medicine , 2004 ; 7 : 341349 .
  • 19
    ThomasK . Overview and introduction to advance care planning . In : ThomasK , LoboB ( eds ) Advance Care Planning in End of Life Care . Oxford : Oxford University Press , 2011 : 315 .
  • 20
    LynnJ . A commentary: where to live while dying . The Gerontologist , 2002 ; 42 ( Suppl. 3 ): 6870 .
  • 21
    FarberA , FarberS . The respectful death model: difficult conversations at the end of life . In : KatzRS , JohnsonTG ( eds ) When Professionals Weep Emotions and Contertransference Responses in End-of-Life Care . New York : Routledge , 2006 : 221236 .
  • 22
    TimmermansS . Death brokering: constructing culturally appropriate deaths . Sociology of Health & Illness , 2005 ; 27 : 9931013 .
  • 23
    TerryW , OlsonLG , WilssL , Boulton-LewisG . Experience of dying: concerns of dying patients and of carers . Internal Medicine Journal , 2006 ; 36 : 338346 .
  • 24
    WhiteheadB , O’BrienMR , JackBA , MitchellD . Experiences of dying, death and bereavement in motor neurone disease: a qualitative study . Palliative Medicine , 2011 ; published online 28 June 2011, doi: 10.1177/0269216311410900 .
  • 25
    OliverD . Palliative Care . In : KiernanMC ( ed .) The Motor Neurone Disease Handbook . Pyrmont : Australasian Medical Publishing Company , 2007 : 186195 .
  • 26
    TurnerMR , Al-ChalabiA . Clinical phenotypes . In : KiernanM ( ed .) The Motor Neurone Disease Handbook . Pyrmont : Australasian Medical Publishing Company Ltd , 2007 : 5673 .
  • 27
    ChioA , MoraG , LeoneM et al. Early symptom progression rate is related to ALS outcome: a prospective population-based study . Neurology , 2002 ; 59 : 99103 .
  • 28
    OliverD . Palliative care for motor neurone disease . Practical Neurology , 2002 ; 2 : 6879 .
  • 29
    BorasioGD , RogersA , VoltzR . Palliative medicine in non-malignant neurological disorders . In : DoyleD , HanksG , ChernyNI , CalmanK ( eds ) Oxford Textbook of Palliative Medicine , 3rd edn . Oxford : Oxford University Press , 2004 : 925934 .
  • 30
    BrownJB . User, carer and professional experiences of care in motor neurone disease . Primary health care research and development , 2003 ; 4 : 207217 .
  • 31
    KrivickasLS , ShockleyL , MitsumotoH . Home care of patients with amyotrophic lateral sclerosis . Journal of Neurological Sciences , 1997 ; 152 ( Suppl. 1 ): S82S89 .
  • 32
    BrownJB , LattimerV , TudballT . An investigation of patients and providers’ views of services for motor neurone disease . British Journal Neuroscience Nursing , 2006 ; 1 : 249252 .
  • 33
    MackenzieRA . Living with motor neurone disease: a personal perspective . In : KiernanMC ( ed .) The Motor Neurone Disease Handbook . Pyrmont : Australasian Medical Publishing Company , 2007 : 155163 .
  • 34
    RayRA , StreetAF . Nonfinite loss and emotional labour: family caregivers’ experiences of living with motor neurone disease . Journal of Clinical Nursing , 2007 ; 16 : 3543 .
  • 35
    HindsPS , VogelRJ , Clarke-SteffenL . The possibilities and pitfalls of doing a secondary analysis of a qualitative data set . Qualitative Health Research , 1997 ; 7 : 408424 .
  • 36
    HughesRA , AspinalF , HigginsonIJ et al. Assessing palliative care outcomes for people with motor neurone disease living at home . International Journal of Palliative Nursing , 2004 ; 10 : 449453 .
  • 37
    RabkinJG , AlbertSM , Del BeneML et al. Prevalence of depressive disorders and change over time in late-stage ALS . Neurology , 2005 ; 65 : 6267 .
  • 38
    TalbotK . Epidemiology of motor neurone disease . In : KiernanMC ( ed .) The Motor Neurone Disease Handbook . Pyrmont : Australasian Medical Publishing Company , 2007:313 .
  • 39
    HeatonJ . Reworking Qualitative Data . London : Sage Publications , 2004 .
  • 40
    HowardRS , OrrellRW . Management of motor neurone disease . Postgraduate Medicine Journal , 2002 ; 78 : 736741 .
  • 41
    CharmazK . Grounded theory; Objectivist and constructivist methods . In : DenzinNK , LincolnYS ( eds ). Handbook of Qualitative Research . Thousand Oaks : Sage Publications , 2000 : 509529 .
  • 42
    RayRA , StreetAF . Caregiver bodywork: family member’s experiences of caring for someone living with motor neurone disease (MND) . Journal of Advanced Nursing , 2006 ; 56 : 3543 .
  • 43
    ZhangAY , SiminoffLA . Silence and cancer: why do families and patients fail to communicate?Health Communication , 2003 ; 15 : 415429 .
  • 44
    StreetAF , KissaneDW . Constructions of dignity in end-of-life care . Journal of Palliative Care , 2001 ; 17 : 93101 .
  • 45
    SaundersC . Pain and impending death . In : SaundersC ( ed .) Cicely Saunders; Selected Writings . Oxford : Oxford University Press , 2006 : 185196
  • 46
    ShearM , MulhareE . Complicated grief . Psychatiric Annals , 2008 ; 39 : 662670 .
  • 47
    GardnerDS , KramerBJ . End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers . Omega , 2009 ; 60 : 273297 .
  • 48
    MadioniF , MoralesC , MichelJP . Body image and the impact of terminal disease . European Journal of Palliative care , 1997 ; 4 : 160162 .
  • 49
    LawtonJ . The Dying Process: Patients’ Experiences of Palliative Care . London : Routledge , 2000 .
  • 50
    CannuscioCC , ColditzGA , RimmEB , BerkmanLF , JonesCP , KawachiI . Employment status, social ties, and caregivers’ mental health . Social Science & Medicine , 2004 ; 58 : 12471256 .
  • 51
    MetzgerPL , GrayMJ . End-of-life communication and adjustment: pre-loss communication as a predictor of bereavement-related outcomes . Death Studies , 2008 ; 32 : 301325 .
  • 52
    EngelbergRA , PatrickDL , CurtisJR . Correspondence between patients’ preferences and surrogates’ understandings for dying and death . Journal of Pain and Symptom Management , 2005 ; 30 : 498509 .
  • 53
    LocockL , BrownJ . Interacting with other people living with ALS/MND: patient and carers attitudes to support groups . Amyotrophic Lateral Sclerosis , 2008 ; 9 ( Suppl. 1 ): 157 .
  • 54
    ThomasK . Improving end of life care using Gold Standards Framework . BMJ Supportive and Palliative Care , 2011 ; 1 : 6667 .
  • 55
    McLeanLM , JonesJM . A review of distress and its management in couples facing end-of-life cancer . Psycho-Oncology , 2007 ; 16 : 603616 .
  • 56
    RayRA , StreetAF . Who’s there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease . Health and Social Care in the Community , 2005 ; 13 : 542552 .