564
Views
19
CrossRef citations to date
0
Altmetric
Peer-Reviewed Articles

Challenges Facing Families at the End of Life in Three Settings

, , &
Pages 144-168 | Received 25 Feb 2009, Accepted 29 Oct 2009, Published online: 16 Mar 2010

REFERENCES

  • Andershed , B. ( 2006 ). Relatives in end-of-life care—Part 1: A systematic review of the literature the five last years, January 1999–February 2004 . Journal of Clinical Nursing , 15 ( 9 ), 1158 – 1169 .
  • Andershed , B. , & Ternestedt , B. M. ( 1999 ). Involvement of relatives in care of the dying in different care cultures: Development of a theoretical understanding . Nursing Science Quarterly , 12 ( 1 ), 45 – 51 .
  • Aoun , S. , Kristjanson , L. , & Oldham , L. (2006). The challenges and unmet needs of people with neurodegenerative conditions and their carers. Journal for Community Nurses , 11(1), 17–20.
  • Aoun , S. , Kristjanson , L. J. , Currow , D. C. , & Hudson , P. L. ( 2005 ). Caregiving for the terminally ill: At what cost? Palliative Medicine , 19 ( 7 ), 551 – 555 .
  • Arman , M. ( 2007 ). Bearing witness: An existential position in caring . Contemporary Nurse , 27 ( 1 ), 84 – 93 .
  • Baer , W. M. , & Hanson , L. C. ( 2000 ). Families' perception of the added value of hospice in the nursing home . Journal of the American Geriatrics Society , 48 ( 8 ), 879 – 882 .
  • Bailey , D. E. , Mishel , M. H. , Belyea , M. , Stewart , J. L. , & Mohler , J. ( 2004 ). Uncertainty intervention for watchful waiting in prostate cancer . Cancer Nursing , 27 ( 5 ), 339 – 346 .
  • Benjamin , A. E. , Matthias , R. E. , Kietzman , K. , & Furman , W. ( 2008 ). Retention of paid related caregivers: Who stays and who leaves home care careers? The Gerontologist , 48 (Suppl. 1) , 104 – 113 .
  • Bowers , B. J. , Fibich , B. , & Jacobson , N. ( 2001 ). Care-as-service, care-as-relating, care-as-comfort: Understanding nursing home residents' definitions of quality . The Gerontologist , 41 ( 4 ), 539 – 545 .
  • Bowling , A. , & Charlton , J. ( 1987 ). Risk factors for mortality after bereavement: A logistic regression analysis . The Journal of the Royal College of General Practitioners , 37 ( 305 ), 551 – 554 .
  • Boyatzis , R. E. ( 1998 ). Transforming qualitative information: Thematic analysis and code development . Thousand Oaks , CA : Sage Publications .
  • Broback , G. , & Bertero , C. ( 2003 ). How next of kin experience palliative care of relatives at home . European Journal of Cancer Care (English) , 12 ( 4 ), 339 – 346 .
  • Browning , A. M. ( 2009 ). Empowering family members in end-of-life care decision making in the intensive care unit . Dimensions of Critical Care Nursing , 28 ( 1 ), 18 – 23 .
  • Browning , A. M. , & Cartwright , A. ( 1982 ). Life after a death: A study of the elderly widowed . New York : Tavistock Publications .
  • Byock , I. R. , Corbeil , Y. J. , & Goodrich , M. E. ( 2009 ). Beyond polarization, public preferences suggest policy opportunities to address aging, dying, and family caregiving . American Journal of Hospice and Palliative Care , 26 ( 3 ), 200 – 208 .
  • Callahan , D. ( 2009 ). Death, mourning, and medical progress . Perspectives in Biology and Medicine , 52 ( 1 ), 103 – 115 .
  • Clukey , L. ( 2008 ). Anticipatory mourning: Processes of expected loss in palliative care . International Journal of Palliative Nursing , 14 ( 7 ), 316 , 318 – 325 .
  • Coffey , A. J. , & Atkinson , P. A. ( 1996 ). Making sense of qualitative data: Complementary research strategies . Thousand Oaks , CA : Sage Publications .
  • Csikai , E. L. ( 2006 ). Bereaved hospice caregivers' perceptions of the end-of-life care communication process and the involvement of health care professionals . Journal of Palliative Medicine , 9 ( 6 ), 1300 – 1309 .
  • de Araujo , M. M. , da Silva , M. J. , & Francisco , M. C. ( 2004 ). Nursing the dying: Essential elements in the care of terminally ill patients . International Nursing Review , 51 ( 3 ), 149 – 158 .
  • Desbiens , N. A. , Wu , A. W. , Broste , S. K. , Wenger , N. S. , Connors , A. F. , Jr. , et al. . ( 1996 ). Pain and satisfaction with pain control in seriously ill hospitalized adults: Findings from the SUPPORT research investigations. For the SUPPORT investigators. Study to understand prognoses and preferences for outcomes and risks of treatment [see comment] . Critical Care Medicine , 24 ( 12 ), 1953 – 1961 .
  • Downey , L. , Engelberg , R. A. , Curtis , J. R. , Lafferty , W. E. , & Patrick , D. L. (2009). Shared priorities for the end-of-life period. Journal of Pain and Symptom Management , 37(2), 175–188.
  • Drisko , J. ( 1997 ). Strengthening qualitative studies and reports: Standards to enhance academic integrity . Journal of Social Work Education , 33 , 10 .
  • Dumont , I. , Dumont , S. , & Mongeau , S. ( 2008 ). End-of-life care and the grieving process: Family caregivers who have experienced the loss of a terminal-phase cancer patient . Qualitative Health Research , 18 ( 8 ), 1049 – 1061 .
  • Gardner , D. S. ( 2008 ). Cancer in a dyadic context: Older couples' negotiation of ambiguity and search for meaning at the end of life . Journal of Social Work in End-of-Life and Palliative Care , 4 ( 2 ), 135 – 159 .
  • Grbich , C. , Parker , D. , & Maddocks , I. ( 2001 ). The emotions and coping strategies of caregivers of family members with a terminal cancer . Journal of Palliative Care , 17 ( 1 ), 30 – 36 .
  • Han , B. , Remsburg , R. E. , McAuley , W. J. , Keay , T. J. , & Travis , S. S. ( 2006 ). TRENDS: National trends in adult hospice use 1991–1992 to 1999–2000 . Health Affairs , 25 ( 3 ), 792 – 799 .
  • Hebert , R. S. , Schulz , R. , Copeland , V. C. , & Arnold , R. M. ( 2009 ). Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients . Journal of Pain and Symptom Management , 37 ( 1 ), 3 – 12 .
  • Hooyman , N. , & Kramer , B. J. ( 2008 ). Living through loss: Interventions across the life span . New York : Columbia University Press .
  • Jo , S. , Brazil , K. , Lohfield , L. , & Willison , K. ( 2007 ). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients . Palliative and Supportive Care , 5 ( 1 ), 11 – 17 .
  • Johnson , V. M. , Teno , J. M. , Bourbonniere , M. , & Mor , V. ( 2005 ). Palliative care needs of cancer patients in U.S. nursing homes . Journal of Palliative Medicine , 8 ( 2 ), 273 – 279 .
  • Kayser-Jones , J. ( 2002 ). The experience of dying: An ethnographic nursing home study . The Gerontologist , 42 ( Suppl. 3 ), 11 – 19 .
  • Keegan , O. , McGee , H. , Hogan , M. , Kunin , H. , O'Brien , S. , & O'Siorain , L. ( 2001 ). Relatives' views of health care in the last year of life . International Journal of Palliative Nursing , 7 ( 9 ), 449 – 456 .
  • Kehl , K. A. ( 2006 ). Moving toward peace: An analysis of the concept of a good death . American Journal of Hospice and Palliative Care , 23 ( 4 ), 277 – 286 .
  • Kiely , D. K. , Prigerson , H. , & Mitchell , S. L. ( 2008 ). Health care proxy grief symptoms before the death of nursing home residents with advanced dementia . American Journal of Geriatric Psychiatry , 16 ( 8 ), 664 – 673 .
  • King , N. , Bell , D. , & Thomas , K. ( 2004 ). Family carers' experiences of out-of-hours community palliative care: A qualitative study . International Journal of Palliative Nursing , 10 ( 2 ), 76 – 83 .
  • Kirchhoff , K. T. , & Kehl , K. A. ( 2008 ). Recruiting participants in end-of-life research . American Journal of Hospice and Palliative Care , 24 ( 6 ), 515 – 521 .
  • Kramer , B. J. , & Auer , C. (2005). Challenges to providing end-of-life care to low-income elders with advanced chronic disease: Lessons learned from a model program. The Gerontologist , 45(5), 651–660.
  • Kramer , B. J. , Christ , G. H. , Bern-Klug , M. , & Francoeur , R. B. ( 2005 ). A national agenda for social work research in palliative and end-of-life care . Journal of Palliative Medicine , 8 ( 2 ), 418 – 431 .
  • Kristjanson , L. J. , Walton , J. , & Toye , C. ( 2005 ). End-of-life challenges in residential aged care facilities: A case for a palliative approach to care . International Journal of Palliative Nursing , 11 ( 3 ), 127 – 129 .
  • Kruse , B. ( 2004 ). The meaning of letting go: The lived experience for caregivers of persons at the end of life . Journal of Hospice & Palliative Nursing , 6 ( 4 ), 215 – 222 .
  • Lincoln , Y. S. , & Guba , E. G. ( 1985 ). Naturalistic inquiry . Beverly Hills , CA : Sage Publications .
  • Long , J. ( 2008 , September 15 ). Inpatient hospice facilities become more common . Chicago Tribune. Retrieved July 17, 2009, from http://archives.chicagotribune.com/2008/sep/15/local/chi-hospice-inpatient-15-sep15
  • Marks , N. F. ( 1996 ). Caregiving across the lifespan: National prevalence and predictors . Family Relations , 45 , 27 – 36 .
  • Milberg , A. , Strang , P. , Carlsson , M. , & Borjesson , S. ( 2003 ). Advanced palliative home care: Next-of-kin's perspective . Journal of Palliative Medicine , 6 ( 5 ), 749 – 756 .
  • Mishel , M. H. , Belyea , M. , Germino , B. B. , Stewart , J. L. , Bailey , D. E. , Jr. , et al. . ( 2002 ). Helping patients with localized prostate carcinoma manage uncertainty and treatment side effects: Nurse-delivered psychoeducational intervention over the telephone . Cancer , 94 ( 6 ), 1854 – 1866 .
  • Mishel , M. H. , & Braden , C. J. ( 1987 ). Uncertainty. A mediator between support and adjustment . Western Journal of Nursing Research , 9 ( 1 ), 43 – 57 .
  • Mishel , M. H. , Germino , B. B. , Belyea , M. , Stewart , J. L. , Bailey , D. E. , Jr. , et al. . ( 2003 ). Moderators of an uncertainty management intervention: For men with localized prostate cancer . Nursing Research , 52 ( 2 ), 89 – 97 .
  • Mishel , M. H. , Hostetter , T. , King , B. , & Graham , V. ( 1984 ). Predictors of psychosocial adjustment in patients newly diagnosed with gynecological cancer . Cancer Nursing , 7 ( 4 ), 291 – 299 .
  • Mishel , M. H. , Padilla , G. , Grant , M. , & Sorenson , D. S. ( 1991 ). Uncertainty in illness theory: A replication of the mediating effects of mastery and coping . Nursing Research , 40 ( 4 ), 236 – 240 .
  • Munn , J. C. , Dobbs , D. , Meier , A. , Williams , C. S. , Biola , H. , & Zimmerman , S. ( 2008 ). The end-of-life experience in long-term care: Five themes identified from focus groups with residents, family members, and staff . The Gerontologist , 48 ( 4 ), 485 – 494 .
  • National Consensus Project Steering Committee . ( 2004 ). Clinical practice guidelines for quality palliative care . Pittsburgh , PA : National Consensus Project for Quality Palliative Care .
  • Northouse , L. L. , Rosset , T. , Phillips , L. , Mood , D. , Schafenacker , A. , & Kershaw , T. ( 2006 ). Research with families facing cancer: The challenges of accrual and retention . Research in Nursing & Health , 29 ( 3 ), 199 – 211 .
  • Padgett , D. ( 1998 ). Qualitative methods in social work research: Challenges and rewards . Thousand Oaks , CA : Sage Publications .
  • Patton , M. Q. (2002). Qualitative research and evaluation methods, , (3rd ed.). Thousand Oaks , CA : Sage.
  • Perreault , A. , Fothergill-Bourbonnais , F. , & Fiset , V. ( 2004 ). The experience of family members caring for a dying loved one . International Journal of Palliative Nursing , 10 ( 3 ), 133 – 143 .
  • Pierce , S. F. ( 1999 ). Improving end-of-life care: Gathering suggestions from family members . Nursing Forum , 34 ( 2 ), 5 – 14 .
  • Proot , I. M. , Abu-Saad , H. H. , Crebolder , H. F. , Goldsteen , M. , Luker , K. A. , & Widdershoven , G. A. ( 2003 ). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity . Scandinavian Journal of Caring Sciences , 17 ( 2 ), 113 – 121 .
  • Reynolds , K. , Henderson , M. , Schulman , A. , & Hanson , L. C. ( 2002 ). Needs of the dying in nursing homes . Journal of Palliative Medicine , 5 ( 6 ), 895 – 901 .
  • Rickerson , E. , Harrold , J. , Kapo , J. , Carroll , J. T. , & Casarett , D. ( 2005 ). Timing of hospice referral and families' perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatrics Society , 53 ( 5 ), 819 – 823 .
  • Rogers , A. , Karlsen , S. , & Addington-Hall , J. ( 2000 ). ‘All the services were excellent. It is when the human element comes in that things go wrong': Dissatisfaction with hospital care in the last year of life . Journal of Advanced Nursing , 31 ( 4 ), 768 – 774 .
  • Rose , K. E. ( 1999 ). A qualitative analysis of the information needs of informal carers of terminally ill cancer patients . Journal of Clinical Nursing , 8 ( 1 ), 81 – 88 .
  • Stajduhar , K. I. ( 2003 ). Examining the perspectives of family members involved in the delivery of palliative care at home . Journal of Palliative Care , 19 ( 1 ), 27 – 35 .
  • Steinhauser , K. E. , Christakis , N. A. , Clipp , E. C. , McNeilly , M. , McIntyre , L. , & Tulsky , J. A. ( 2000 ). Factors considered important at the end of life by patients, family, physicians, and other care providers . Journal of the American Medical Association , 284 ( 19 ), 2476 – 2482 .
  • Steinhauser , K. E. , Clipp , E. C. , McNeilly , M. , Christakis , N. A. , McIntyre , L. M. , & Tulsky , J. A. ( 2000 ). In search of a good death: Observations of patients, families, and providers . Annals of Internal Medicine , 132 ( 10 ), 825 – 832 .
  • Stillman , M. J. , & Syrjala , K. L. ( 1999 ). Differences in physician access patterns to hospice care . Journal of Pain and Symptom Management , 17 ( 3 ), 157 – 163 .
  • Stone , R. , Cafferata , G. L. , & Sangl , J. ( 1987 ). Caregivers of the frail elderly: A national profile . The Gerontologist , 27 ( 5 ), 616 – 626 .
  • Strassels , S. A. , Blough , D. K. , Hazlet , T. K. , Veenstra , D. L. , & Sullivan , S. D. ( 2006 ). Pain, demographics, and clinical characteristics in persons who received hospice care in the United States . Journal of Pain and Symptom Management , 32 ( 6 ), 519 – 531 .
  • Temkin-Greener , H. , & Mukamel , D. B. ( 2002 ). Predicting place of death in the program of all-inclusive care for the elderly (PACE): Participant versus program characteristics . Journal of the American Geriatrics Society , 50 ( 1 ), 125 – 135 .
  • Teno , J. M. , Casey , V. A. , Welch , L. C. , & Edgman-Levitan , S. ( 2001 ). Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members . Journal of Pain and Symptom Management , 22 ( 3 ), 738 – 751 .
  • Teno , J. M. , Clarridge , B. R. , Casey , V. , Welch , L. C. , Wetle , T. , et al.. (2004). Family perspectives on end-of-life care at the last place of care [see comment]. Journal of the American Medical Association , 291(1), 88–93.
  • Teno , J. M. , Gruneir , A. , Schwartz , Z. , Nanda , A. , & Wetle , T. ( 2007 ). Association between advance directives and quality of end-of-life care: A national study . Journal of the American Geriatrics Society , 55 ( 2 ), 189 – 194 .
  • Teno , J. M. , Kabumoto , G. , Wetle , T. , Roy , J. , & Mor , V. ( 2004 ). Daily pain that was excruciating at some time in the previous week: Prevalence, characteristics, and outcomes in nursing home residents . Journal of the American Geriatrics Society , 52 ( 5 ), 762 – 767 .
  • Thompson , G. N. , Menec , V. H. , Chochinov , H. M. , & McClement , S. E. ( 2008 ). Family satisfaction with care of a dying loved one in nursing homes: What makes the difference? Journal of Gerontological Nursing , 34 ( 12 ), 37 – 44 .
  • Waldrop , D. P. , Kramer , B. J. , Skretny , J. A. , Milch , R. A. , & Finn , W. ( 2005 ). Final transitions: Family caregiving at the end of life . Journal of Palliative Medicine , 8 ( 3 ), 623 – 638 .
  • Weitzner , M. A. , McMillan , S. C. , & Jacobsen , P. B. ( 1999 ). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings . Journal of Pain and Symptom Management , 17 ( 6 ), 418 – 428 .
  • Wilson , S. A. , & Daley , B. J. ( 1999 ). Family perspectives on dying in long-term care settings . Journal of Gerontological Nursing , 25 ( 11 ), 19 – 25 .

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.