Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective

Qualitative Health Research

Volumn 24, Issue 1, 2014, Pages 67-77

  Foley, Geraldine ^a   Timonen, Virpi ^a   Hardiman, Orla ^a  

^a TRINITY COLLEGE DUBLIN   (Ireland)

Author keywords

aging; families; grounded theory; health care, users' experiences; illness and disease, life threatening terminal; palliative care; parenting

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; AGING; AMYOTROPHIC LATERAL SCLEROSIS; ATTITUDE TO DEATH; DECISION MAKING; FAMILY RELATION; FEMALE; HUMAN; IRELAND; MALE; MIDDLE AGED; PATIENT ATTITUDE; PSYCHOLOGY; VERY ELDERLY;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; AGING; AMYOTROPHIC LATERAL SCLEROSIS; ATTITUDE TO DEATH; DECISION MAKING; FAMILY RELATIONS; FEMALE; HUMANS; IRELAND; MALE; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE;

EID: 84893006437     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732313516545     Document Type: Article

References (46)

1. Albert S. M., Whitaker A., Rabkin J. G., del Bene M., Tider T., O'Sullivan I., Mitsumoto H.. Medical and supportive care among people with ALS in the months before death or tracheostomy. Journal of Pain and Symptom Management. 2009 ; 38 (4). 546-553
2. Alwin D. F.. Integrating varieties of life course concepts. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences. 2012 ; 67 (2). 206-220
3. Andersen P. M., Abrahams S., Borasio G. D., de Carvalho M., Chio A., Van Damme P.,...Weber M.. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) - Revised report of an EFNS task force. European Journal of Neurology. 2012 ; 19 (3). 360-375
4. Aoun S. M., Connors S. L., Priddis L., Breen L. J., Colyer S.. Motor neurone disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study. Palliative Medicine. 2012 ; 26 (6). 842-850
5. Bell K., Ristovski-Slijepcevic S.. Metastatic cancer and mothering: Being a mother in the face of a contracted future. Medical Anthropology. 2011 ; 30 (6). 629-649
6. Boeije H. R., Duijnstee M. S. H., Grypdonck M. H. F., Pool A.. Encountering the downward phase: Biographical work in people with multiple sclerosis living at home. Social Science and Medicine. 2002 ; 55 (6). 881-893
7. Brown J., Addington-Hall J.. How people with motor neurone disease talk about living with their illness: A narrative study. Journal of Advanced Nursing. 2008 ; 62 (2). 200-208
8. Casarett D.. Ethical considerations in end-of-life care and research. Journal of Palliative Medicine. 2005 ; 8: S148 - S160
9. Charmaz K. Constructing grounded theory. A practical guide through qualitative analysis. London: Sage ; 2006 :
10. Chio A., Logroscino G., Hardiman O., Swingler R., Mitchell D., Beghi E., Traynor B. G.. Prognostic factors in ALS: A critical review. Amyotrophic Lateral Sclerosis. 2009 ; 10 (5-6). 310-323
11. Corbin J., Strauss A. Basics of qualitative research. Techniques and procedures for developing grounded theory. 2008 ). Basics of qualitative research. Techniques and procedures for developing grounded theory (3rd ed.). London: Sage. London: Sage ; 2008 :
12. Cumming E., Henry W. E. Growing old: The process of disengagement. New York: Basic Books ; 1961 :
13. De Raedt R., Koster E. H., Ryckewaert R.. Aging and attentional bias for death related and general threat-related information: Less avoidance in older as compared with middle-aged adults. Journals of Gerontology, Series B: Psychological and Social Sciences. 2013 ; 68 (1). 41-48
14. Elder G. H. Social dynamics of the life course: Transitions, institutions, and interrelations. Heinz W. R. Marshall V. W., ed. New York: Aldine de Gruyter ; 2003: 57-71.
15. Evenson R. J., Simon R. W.. Clarifying the relationship between parenthood and depression. Journal of Health and Social Behaviour. 2005 ; 46 (4). 341-358
16. Fegg M. J., Kogler M., Brandstatter M., Jox R., Anneser J., Haarmann-Doetkotte S.,... Borasio G. D.. Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis. 2010 ; 11 (5). 469-474
17. Foley G., Timonen V., Hardiman O.. Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review. Amyotrophic Lateral Sclerosis. 2012 ; 13 (1). 11-24
18. Gambling T., Long A. F.. An exploratory study of young women adjusting to developmental dysplasia of the hip and deciding on treatment choices. Chronic Illness. 2012 ; 8 (1). 17-30
19. Ganzini L., Johnston W. S., McFarland B. H., Tolle S. W., Lee M. A.. Attitudes of patients with amyotrophic lateral sclerosis and their carers towards assisted suicide. New England Journal of Medicine. 1998 ; 339 (14). 967-973
20. Gisquet E.. Cerebral implants and Parkinson's disease: A unique form of biographical disruption?. Social Science and Medicine. 2008 ; 67 (11). 1847-1851
21. Gruis K. L., Wren P. A., Huggins J. E.. Amyotrophic lateral sclerosis patients' self-reported satisfaction with assistive technology. Muscle and Nerve. 2011 ; 43 (5). 643-647
22. HaidetP.HamelM. B.DavisR. B.WengerN.RedingD.KussinP. S.... PhillipsR. S. (1998). Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. American Journal of Medicine, 105(3), 222-229. Retrieved from www.amjmed.com/article/S0002-9343(98)00242-3
23. Health Information and Quality Authority. (2013). Irish Motor Neurone Disease Register. Retrieved from www.hiqa.ie/resource-centre/professionals/ health-information-sources/irish-motor-neurone-disease-register
24. Hendricks J.. Considering life course concepts. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences. 2012 ; 67 (2). 226-231
25. Hirano Y., Yamazaki Y.. Ethical issues in invasive mechanical ventilation for amyotrophic lateral sclerosis. Nursing Ethics. 2010 ; 17 (1). 51-63
26. Hirano Y. M., Yamazaki Y., Shimizu J., Togari T., Bryce T. J.. Ventilator dependence and expressions of need: A study of patients with amyotrophic lateral sclerosis in Japan. Social Science and Medicine. 2006 ; 62 (6). 1403-1413
27. Hughes R. A, Sinha A., Higginson I., Down K., Leigh P. N.. Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health and Social Care in the Community. 2005 ; 13 (1). 64-74
28. Locock L., Ziebland S., Dumelow C.. Biographical disruption, abruption and repair in the context of motor neurone disease. Sociology of Health and Illness. 2009 ; 31 (7). 1043-1058
29. Macmillan R., Copher R.. Families in the life course: Interdependency of roles, role configurations, and pathways. Journal of Marriage and Family. 2005 ; 67 (4). 858-879
30. Mandemakers J. J., Dykstra P. A.. Discrepancies in parent's and adult child's reports of support and contact. Journal of Marriage and Family. 2008 ; 70 (2). 495-506
31. Mills T. L., Wilmoth J. M.. Intergenerational differences and similarities in life-sustaining treatment attitudes and decision factors. Family Relations. 2002 ; 51 (1). 46-54
32. Nilsson M. E., Maciejewski P. K., Zhang B., Wright A. A., Trice E. D., Muriel A. C.,... Prigerson H. G.. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer. 2009 ; 115 (2). 399-409
33. Palliative care in amyotrophic lateral sclerosis. From diagnosis to bereavement. 2006 ). Palliative care in amyotrophic lateral sclerosis. From diagnosis to bereavement (2nd ed.). Oxford: Oxford University Press. Oliver D. Borasio G. D. Walsh D., ed. Oxford: Oxford University Press ; 2006 :
34. Phukan J., Elamin M., Bede P., Jordan N., Gallagher L., Byrne S.,... Hardiman O.. The syndrome of cognitive impairment in amyotrophic lateral sclerosis: A population-based study. Journal of Neurology, Neurosurgery and Psychiatry. 2012 ; 83 (1). 102-108
35. Pound P., Gompertz P., Ebrahim S.. Illness in the context of older age: The case of stroke. Sociology of Health and Illness. 1998 ; 20 (4). 489-506
36. QSR International. (2010). NVivo (Version 9) [Computer software]. Cambridge, MA: Author. Retrieved from www.qsrinternational.com/products-nvivo. aspx
37. Quinn J. R., Schmitt M., Baggs J. G., Norton S. A., Dombeck M. T., Sellers C. R.. Family members' informal roles in end-of-life decision making in adult intensive care units. American Journal of Critical Care. 2012 ; 21 (1). 43-51
38. Reeve J., Lloyd-Williams M., Payne S., Dowrick C.. Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer. Health. 2010 ; 14 (2). 178-195
39. Sanders C., Donovan J., Dieppe P.. The significances and consequences of having painful and disabled joints in older age: Co-existing accounts of normal and disrupted biographies. Sociology of Health and Illness. 2002 ; 24 (2). 227-253
40. Sulmasy D. P., Hughes M. T., Thompson R. E., Astrow A. B., Terry P. B., Kub J., Nolan M. T.. How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. Journal of the American Geriatrics Society. 2007 ; 55 (12). 1981-1988
41. Timonen V. Ageing societies. A comparative introduction. Maidenhead, United Kingdom: Open University Press ; 2008 :
42. Timonen V., Doyle M., O'Dwyer C.. Expanded, but not regulated: Ambiguity in home-care policy in Ireland. Health and Social Care in the Community. 2012 ; 20 (3). 310-318
43. Tussing A. D., Wren M. A. How Ireland cares. The case for health care reform. Dublin: New Island ; 2006 :
44. Umberson D., Pudrovska T., Reczek C.. Parenthood, childlessness, and well-being: A life course perspective. Journal of Marriage and Family. 2010 ; 72 (3). 612-629
45. Wijesekera L. C., Leigh P. N.. Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases. 2009 ; 4: 3
46. YellenS. B.CellaD. F. (1995). Someone to live for: Social well-being, parenthood status, and decision-making in oncology. Journal of Clinical Oncology, 13(5), 1255-1264. Retrieved from http://jco.ascopubs.org/content/13/5/ 1255