Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

BMC Palliative Care

Volumn 11, Issue , 2012, Pages

  Bentley, Brenda ^a   Aoun, Samar M ^a   Oconnor, Moira ^a   Breen, Lauren J ^a   Chochinov, Harvey Max ^b  

^a CURTIN UNIVERSITY   (Australia)

^b UNIVERSITY OF MANITOBA   (Canada)

Author keywords

Amyotrophic lateral sclerosis; Dignity therapy; Existential distress; Family carers; Motor neurone disease; Palliative care

Indexed keywords

ANXIETY; ARTICLE; CAREGIVER BURDEN; CLINICAL ARTICLE; CLINICAL TRIAL; DEPRESSION; DIGNITY THERAPY; DYING; HUMAN; HUMAN DIGNITY; MOTOR NEURON DISEASE; PSYCHOSOCIAL CARE; QUESTIONNAIRE; RELIGION; THERAPY EFFECT; TREATMENT OUTCOME;

EID: 84870886714     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/1472-684X-11-18     Document Type: Article

References (38)

1. Quality in life in ALS depends on factors other than strength and physical function. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S, Neurology 2000 55 388 392 10.1212/WNL.55.3.388 10932273
2. Quality of life in ALS is maintained as physical function declines. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S, Neurology 2001 56 442 444 10.1212/WNL.56.4.442 11222784
3. Responding to requests for physician-assisted suicide: "These are uncharted waters for both of us. Bascom PB, Tolle SW, Jama 2002 288 1 91 98 10.1001/jama.288.1.91 12090867
4. Correlates of suffering in amyotrophic lateral sclerosis. Ganzini L, Johnston WS, Hoffman WF, Neurology 1999 52 1434 1440 10.1212/WNL.52.7.1434 10227631
5. Perceptions of quality of life in people with ALS: effects of coping and health care. Foley G, O'Mahony P, Hardiman O, Amyotroph Lateral Scler 2007 8 3 164 169 10.1080/17482960601164532 17538778
6. Meaning in life in patients with amyotrophic lateral sclerosis. Fegg MJ, Kogler M, Brandstatter M, Jox R, Anneser J, Haarmann-Doetkotte S, Wasner M, Borasio GD, Amyotroph Lateral Scler 2010 11 5 469 474 10.3109/17482961003692604 20235757
7. Hope in palliative care: from narcissism to self-transcendence in amytrophic lateral sclerosis. Fanos JH, Gelinas DF, Foster RS, Postone N, Miller RG, J Palliat Med 2008 11 3 470 475 10.1089/jpm.2007.0098 18363490
8. Amyotrophic Lateral Sclerosis. Mitchell J, Borasio G, Lancet 2007 369 2031 2041 10.1016/S0140-6736(07)60944-1 17574095
9. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Trail M, Nelson ND, Van JN, Appel SH, Lai EC, J Neurol Sci 2003 209 1-2 79 85 12686407
10. Are supportive services meeting the needs of Australians with neurodegenerative conditions and their families? Kristjanson LJ, Aoun SM, Yates P, J Palliat Care 2006 22 3 151 157 17058753
11. Motor Neurone Disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study. Aoun S, Connors S, Priddis L, Breen L, Colyer S, Palliat Med 2012 26 6 842 850 10.1177/ 0269216311416036 21775409
12. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Rabkin J, Wagner G, Del Bene M, Psychosom Med 2000 62 2 271 279 10772408
13. The dynamics of quality of life in ALS patients and caregivers. Roach AR, Averill AJ, Ann Behav Med 2009 37 197 206 10.1007/s12160-009-9092-9 19350337
14. Caregiver burden and patients' perception of being a burden in ALS. Chio A, Gauthier A, Calvo A, Ghiglione P, Mutani R, Neurology 2005 64 1780 1782 10.1212/01.WNL.0000162034.06268.37 15911811
15. Dignity in the terminally ill: a developing empirical model. Chochinov H, Hack T, McClement S, Kristjanson L, Harlos M, Soc Sci Med 2002 54 3 433 443 10.1016/S0277-9536(01)00084-3 11824919
16. Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M, J Clin Oncol 2005 23 4 5520 5525 10.1200/JCO.2005.08.391 16110012
17. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Chochinov HM, Kristjanson L, Breitbart W, McClement S, Hack T, Hassard T, Harlos M, Lancet Oncol 2011 12 8 753 762 10.1016/S1470-2045(11)70153-X 21741309
18. Dignity therapy: family member perspectives. McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ, Harlos M, J Palliat Med 2007 10 5 1076 1082 10.1089/jpm.2007.0002 17985964
19. Developing and evaluating complex interventions: the new Medical Research Council guidance. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M, BMJ 2008 337 1655 10.1136/bmj.a1655 18824488
20. Evidence in palliative care research: How should it be gathered? Aoun S, Kristjanson L, Medical Journal of Australia 2005 183 5 264 266 16138803
21. Abbreviated instrument to measure hope: development and psychometric evaluation. Herth K, J Adv Nurs 1992 17 1251 1259 10.1111/j.1365-2648.1992. tb01843.x 1430629
22. Fostering hope in the terminally ill. Buckley J, Herth K, Nurs Stand 2004 19 10 33 41 15633873
23. A comparison of psychosocial and physical functioning in patients with motor neurone disease and metastatic cancer. Clarke D, McLeod JE, Smith GC, Trauer T, Kissane D, J Palliat Care 2005 21 173 179 16334972
24. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA, N Engl J Med 1998 339 14 967 973 10.1056/NEJM199810013391406 9753713
25. The patient dignity inventory: a novel way of measuring dignity related distress in palliative care. Chochinov HM, J Pain Symptom Manage 2008 36 6 559 571 10.1016/j.jpainsymman.2007.12.018 18579340
26. Seeking meaning and hope: Self-reported spiritual and existential needs among an ethnically diverse cancer patient population. Moadel A, Morgan C, Fatone A, Grennan J, Carter J, Laruffa G, Skummy A, Dutcher J, Psychooncology 1999 8 1428 1431
27. The zarit burden interview: a new short version and screening version. Bedard M, Molloy DW, Squire L, Cdubois S, Lever J, O'Donnell M, Gerontologist 2001 41 5 652 657 10.1093/geront/41.5.652 11574710
28. Disparities in perceptions of distress and burden in ALS patients and family caregivers. Adelman EE, Albert SM, Rabkin JG, Del Bene ML, Tider T, O'Sullivan I, Neurology 2004 62 1766 1770 10.1212/01.WNL.0000125180.04000.A4 15159475
29. The ALS Health Profile Study: quality of life of amytrophic lateral sclerosis patients and carers in Europe. Jenkinson C, Fitzpatrick R, Swash M, Peto VALS-HPS Steering Group, J Neurol 2000 247 835 840 10.1007/s004150070069 11151414
30. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, Molinari E, Psychol Health Med 2010 15 6 685 693 10.1080/13548506.2010.507773 21154021
31. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Goldstein LH, Atkins L, Landau S, Brown R, Leigh PN, Psychol Med 2006 36 865 875 10.1017/S0033291706007124 16490122
32. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, Mutani R, Chio A, Neurology 2007 68 12 923 926 10.1212/01.wnl. 0000257093.53430.a8 17372127
33. Hope in the family caregiver of terminally ill people. Herth K, J Adv Nurs 1993 18 4 538 548 10.1046/j.1365-2648.1993.18040538.x 8496501
34. The hospital anxiety and depression scale. Zigmond A, Snaith R, Acta Psychiat Scand 1983 67 361 370 10.1111/j.1600-0447.1983.tb09716.x 6880820
35. Comparison of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) with a short-form five-item version (ALSAQ-5) in a longitudinal survey. [References]. Jenkinson C, Fitzpatrick R, Swash M, Jones G, Clin Rehabil 2007 21 3 266 272 2007 10.1177/0269215506071123 17329284
36. Detecting frontotemporal dysfunction in ALS: Utility of the ALS Cognitive Behavioral Screen (ALS-CBS). Woolley SC, York MK, Moore DH, Strutt AM, Murphy J, Schulz PE, Katz JS, Amyotroph Lateral Scler 2010 11 303 311 10.3109/17482961003727954 20433413
37. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A, J Neurol Sci 1999 169 1-2 13 21 10540002
38. Rating the severity of ALS by caregivers over the telephone using the ALSFRS-R. Kasarskis E, Amyotroph Lateral Scler Other Motor Neuron Disord 2005 6 1 50 54 10.1080/14660820510027107 16036426