Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: A meta-ethnography

Palliative Medicine

Volumn 26, Issue 2, 2012, Pages 108-122

  Hubbard, G ^a   McLachlan, K ^a   Forbat, L ^a   Munday, D ^b  

^a UNIVERSITY OF STIRLING   (United Kingdom)

^b UNIVERSITY OF WARWICK   (United Kingdom)

Author keywords

Family; motor neuron disease; multiple sclerosis; palliative care; Parkinson's disease; prognostication

Indexed keywords

AMBIVALENCE; AWARENESS; DATA BASE; DISEASE COURSE; ETHNOGRAPHY; FAMILY; HUMAN; MOTOR NEURON DISEASE; MULTIPLE SCLEROSIS; PALLIATIVE THERAPY; PARKINSON DISEASE; PROGNOSIS; RECOGNITION; REVIEW; SUPPORT GROUP; WELLBEING;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ANTHROPOLOGY, CULTURAL; ATTITUDE TO DEATH; DISEASE PROGRESSION; FAMILY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MOTOR NEURON DISEASE; MULTIPLE SCLEROSIS; NEURODEGENERATIVE DISEASES; PALLIATIVE CARE; PARKINSON DISEASE; PROGNOSIS; QUALITATIVE RESEARCH;

EID: 84857342225     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216311402712     Document Type: Review

References (55)

1. George R, Sykes J New Themes in Palliative Care. Clark D Hockley J Ahmedzai S, ed. Buckingham: Oxford University Press ; 1997: 239-254.
2. McKinley R, Stoeks T, Exley C, Field D. Care of people dying with malignant and cardiorespiratory disease in general practice. Br J Gen Pract. 2004 ; 54: 909-913
3. Addington-Hall J. Extending palliative care to chronic conditions. Eur J Pall Care. 2005 ; 12: 15-19
4. Murray S, Boyd K, Kendall M, Worth A, Benton T, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002 ; 325: 929-932 (Pubitemid 35265207)
5. Murray SA, Boyd K, Kendall M, Worth A, Fredrick Benton T, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002 ; 225: 929
6. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005 ; 330: 1007-1011 (Pubitemid 40604286)
7. Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing. 2005 ; 34: 218-227 (Pubitemid 40711733)
8. Murray S, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005 ; 330: 1007-1011 (Pubitemid 40604286)
9. McLeod J, Hammon S, Hallpike J. Epidemiology of multiple sclerosis in Australia. Med J Aus. 1994 ; 160: 117-121
10. Fallowfield LJ, Jenkins VA, BHA . Truth may hurt but deceit hurts more: communication in palliative care. Pall Med. 2002 ; 16: 297-303 (Pubitemid 34785126)
11. Murray S. Palliative care in chronic illness. BMJ. 2005 ; 330: 611-612 (Pubitemid 40444753)
12. McKeown L, Porter-Srmstrong A, Baxter G. The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabilitation. 2003 ; 17: 234-248 (Pubitemid 36519268)
13. Whetton-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M. The burden of Parkinson's disease on society, family and the individual. J Am Ger Soc. 1997 ; 45: 844-849 (Pubitemid 27289932)
14. Robin R, Street A. Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease. Health Soc Care Comm. 2005 ; 13: 542-552 (Pubitemid 41524283)
15. Gysels M, Higginson I. Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources. Pall Support Care. 2009 ; 7: 153-162
16. Higginson I, Sen-Gupta G. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Pall Med. 2000 ; 3: 287-300
17. Wolff JL, Dy S, Frick K, Kasper JD. End-of-Life Care: Findings From a National Survey of Informal Caregivers. Arch Intern Med. 2007 ; 167: 40-46 (Pubitemid 46072405)
18. Tilden V, Tolle SW, Garland MJ, Nelson CA. Decisions about life-sustaining treatment: impact of physicians' behaviors on the family. Arch Intern Med. 1995 ; 155: 638
19. Glare P, Sinclair C, Downing M, Stone P, Maltoni M, Vigano A. Predicting survival in patients with advanced disease. Eur J Cancer. 2008 ; 44: 1146-1156
20. Higginson I, McCarthy M. Validity of the Support Team Assessment Schedule: do staff's ratings reflect those made by patients or their families?. Pall Med. 1993 ; 7: 219-228 (Pubitemid 23217440)
21. Caring about carers: a national strategy for carers. London: Department of Health ; 1999 :
22. The future of unpaid care in Scotland. Edinburgh: Scottish Executive ; 2006 :
23. Fantino B, Wainsten J, Bungener M, Joublin H, Brun-Strang C. Perspectives of general practitioners on the role of patients' caregivers in the process of consultation and treatment. Sante Publique. 2007 ; 19: 241-252
24. Shipman C, Gysels M, White P, Worth A, Murray SA, Barclay S, et al. Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ. 2008 ; 337: 1720
25. Andersen P, Borasio G, Dengler R, Hardiman O, Kollewe K, Leigh P, et al. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. Eur J Neurol. 2005 ; 12: 921-938 (Pubitemid 41823891)
26. Noblit G, Hare R Meta-ethnography: synthesising qualitative studies. London: Sage ; 1988 :
27. Adams E, McCann L, Richardson A, Stark D, Armes J, Watson E, Hubbard G. The experiences, needs and concerns of younger women with breast cancer: A meta-ethnography. Psycho-oncology. 2010 ;:
28. Campbell R, Pound P, Pope C, Britten N, Pill R, Morgan M, Donovan J. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003 ; 56: 671-684 (Pubitemid 36135801)
29. Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol. 2008 ; 8 :
30. Goldman A. The ABC of palliative care: special problems of children. BMJ. 1998 ; 316: 49-52 (Pubitemid 28019872)
31. Cochrane Pain PaSCG. Resources for review authors. http://papas.cochrane. org/resources-review-authors, 2010.
32. Dixon-Woods M, Sutton A, Shaw R, Miller T, Young B, Bonas S, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J Health Serv Res Pol. 2007 ; 12: 42-47 (Pubitemid 46174205)
33. Mays N, Pope C. Qualitative research in health care: assessing quality in qualitative research. BMJ. 2000 ; 320: 50-52 (Pubitemid 30173021)
34. Hudson PL, Toye C, Kristjanson LJ. Would people with Parkinson's disease benefit from palliative care?. Pall Med. 2006 ; 20: 87-94
35. Dawson S, Kristjanson LJ. Mapping the journey: family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. J Pall Care. 2003 ; 19: 36-42 (Pubitemid 37140480)
36. Ray RA, Street AF. Non-finite loss and emotional labour: family caregivers' experiences of living with motor neurone disease. J Nurs Healthcare Chronic Ill, in association with J Clin Nurs. 2007 ; 16: 35-43 (Pubitemid 44395176)
37. Wollin JA, Yates PM, Kristjanson LJ. Supportive and palliative care needs identified by multiple sclerosis patients and their families. Int J Pall Nurs. 2006 ; 12: 20-26
38. Christakis N, Lamont E. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. BMJ. 2010 ; 320: 469-473
39. Hughes RA, Sinha A, Higginson I, Down K, Leigh PN. Living with motor neurone disease: lives, experiences of services and suggestions for change. Health Soc Care Comm. 2005 ; 13: 64-74 (Pubitemid 40131804)
40. Bolmsjo I, Hermern G. Conflicts of interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis. Nurs Ethics. 2003 ; 10: 186-198 (Pubitemid 44145470)
41. Giles S, Miyasaki J. Palliative stage Parkinson's disease: patient and family experiences of health-care services. Pall Med. 2009 ; 23: 120-125
42. Worth A, Irshad T, Bhopal R, Brown D, Lawton J, Grant E, et al. Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study. BMJ. 2009 ; 338: b183
43. McCarthy M, Higginson I. Clinical Audit by a Palliative Care Team. Pall Med. 1991 ; 5: 221
44. Glare P, Sinclair C, Downing M, Stone P, Maltoni M, Vigano A. A systematic review of physicians' survival predictions in terminally ill patients.; 1 1 4 6 -1 1 5 6. Eur J Cancer. 2008 ; 44: 1146-1156
45. Hancock K. Discrepant perceptions about end-of-life communication: A systematic review. J Pain Symptom Management. 2007 ; 34: 190-200 (Pubitemid 47096782)
46. Clayton JM. When and how to initiate discussion about prognosis and EOL issues with terminally ill patients. J Pain Symptom Management. 2005 ; 30: 132-144 (Pubitemid 41206576)
47. Barbour RS, Barbour M. Evaluating and synthesising qualitative research: the need to develop a distinctive approach. J Evaluation Clin Pract. 2003 ; 9: 179-186 (Pubitemid 36749547)
48. Lau F, Downing M, Lesperance M, Karlson N, Kuziemsky C, Yang J. Using the Palliative Performance Scale to provide meaningful survival estimates. J Pain Symptom Management. 2009 ; 38: 134-144
49. Llobera J, Esteva M, Rifa J. Terminal cancer: duration and prediction of survival time. Eur J Cancer. 2000 ; 36: 2036-2043
50. Abel E, Browner C Pragmatic women and body politics. Lock M Kaufert P, ed. Cambridge: Cambridge University Press ; 1998: 310-326.
51. Borkman T. Experiential knowledge: a new concept for the analysis of self-help groups. Soc Sci Rev. 1976 ; 50: 445-456
52. Elkington H, White P, Higgs R, Johnson Pettinari C. GPs' views of discussion of prognosis in severe COPD. Family Pract. 2001 ; 18: 440-444 (Pubitemid 32771648)
53. McCarthy M, Addington-Hall J, Lay M. Communication and choice in dying from heart disease. J Res Soc Med. 1997 ; 80: 128-131 (Pubitemid 27135942)
54. Curtis J, Patrick D, Caldwell E, Greenlee H, Collier A. The quality of patient-doctor communication about end of life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999 ; 13: 1123-1131 (Pubitemid 29361404)
55. Nolan M, Kub J, Hughes M, Terry P, Astrow A, Carbo C, et al. Family health care decision making and self efficacy with patients wtih ALS at the end of life. J Pall Support Care. 2008 ; 6: 273-280