Exerting control and adapting to loss in amyotrophic lateral sclerosis

Social Science and Medicine

Volumn 101, Issue , 2014, Pages 113-119

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

^a TRINITY COLLEGE DUBLIN   (Ireland)

^b BEAUMONT HOSPITAL   (Ireland)

Author keywords

Adapting to loss; Amyotrophic lateral sclerosis; Decision making; End of life care; Exerting control; Healthcare experiences; Ireland; Motor neurone disease

Indexed keywords

DECISION MAKING; DISEASE CONTROL; HEALTH CARE; HEALTH SERVICES; NERVOUS SYSTEM DISORDER;

ADAPT TO LOSS; ADAPTIVE BEHAVIOR; ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; ATTITUDE TO HEALTH; CLINICAL ARTICLE; CLINICAL PRACTICE; DOCTOR PATIENT RELATION; FEMALE; HEALTH CARE UTILIZATION; HEALTH SERVICE; HUMAN; INTERVIEW; IRISH (CITIZEN); MALE; MEDICAL DECISION MAKING; MIDDLE AGED; PATIENT ATTITUDE; PATIENT CARE; PERSONAL EXPERIENCE; TERMINAL CARE; VERY ELDERLY;

IRELAND;

ADAPTING TO LOSS; AMYOTROPHIC LATERAL SCLEROSIS; DECISION-MAKING; END-OF-LIFE CARE; EXERTING CONTROL; HEALTHCARE EXPERIENCES; IRELAND; MOTOR NEURONE DISEASE;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; AMYOTROPHIC LATERAL SCLEROSIS; FEMALE; HUMANS; IRELAND; MALE; MIDDLE AGED; PATIENT PARTICIPATION; POWER (PSYCHOLOGY); PSYCHOLOGICAL THEORY; QUALITATIVE RESEARCH; YOUNG ADULT;

EID: 84894088034     PISSN: 02779536     EISSN: 18735347     Source Type: Journal    
DOI: 10.1016/j.socscimed.2013.11.003     Document Type: Article

References (39)

1. Albert S.M., Murphy P.L., Del Bene M.L., Rowland L.P. Aprospective study of preferences and actual treatment choices in ALS. Neurology 1999, 53(2):278-283.
2. Andersen P.M., Abrahams S., Borasio G.D., de Carvalho M., Chio A., Van Damme P., et al. 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.
3. Anderson M., Asnani M. "You just have to live with it": coping with sickle cell disease in Jamaica. Qualitative Heath Research 2013, 23(5):655-664.
4. Astrow A.B., Sood J.R., Nolan M.T., Terry P.B., Clawson L., Kub J., et al. Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. Journal of Medical Ethics 2008, 34(9):664-668.
5. Broom A., Cavenagh J. On the meanings and experiences of living and dying in an Australian hospice. Health 2011, 15(1):96-111.
6. 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.
7. Chapple A., Ziebland S., McPherson A., Herxheimer A. What people close to death say about euthanasia and assisted suicide: a qualitative study. Journal of Medical Ethics 2006, 32(12):706-710.
8. Charmaz K. The body, identity, and self: adapting to impairment. Sociological Quarterly 1995, 36(4):657-680.
9. Charmaz K. Constructing grounded theory. A practical guide through qualitative analysis 2006, Sage, London.
10. Cheng J.O.Y., Lo R.S.K., Chan F.M.Y., Kwan B.H.F., Woo J. An exploration of anticipatory grief in advanced cancer patients. Psycho-Oncology 2010, 19(7):693-700.
11. Chio A., Bottacchi A., Buffa C., Mutani R., Mora G. Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. Journal of Neurology, Neurosurgery and Psychiatry 2006, 77(8):948-950.
12. Chio A., Montuschi A., Cammarosano S., De Mercanti S., Cavallo E., Ilardi A., et al. ALS patients and caregivers communication preferences and information seeking behaviour. European Journal of Neurology 2008, 15(1):55-60.
13. Cooney G., Lewando Hundt G., Goodall G., Weaver J. Choices and control when you have a life-shortening illness. Researching the views of people with motor neurone disease 2012, Picker Institute Europe, Oxford, Accessed April 2013. http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Documents/Choices%20and%20control%20FINAL.pdf.
14. Corbin J., Strauss A. Basics of qualitative research. Techniques and procedures for developing grounded theory 2008, Sage, London. 3rd ed.
15. Edmonds P., Vivat B., Burman R., Silber E., Higginson I.J. Loss and change: experiences of people severely affected by multiple sclerosis. Palliative Medicine 2007, 21(2):101-107.
16. Entwistle V., Firnigi D., Ryan M., Francis J., Kinghorn P. Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map. Journal of Health Services Research and Policy 2012, 17(2):70-78.
17. Foley G., Timonen V., Hardiman O. Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiences. American Journal of Hospice and Palliative Medicine 2012, 29(5):362-367.
18. Goldstein L.H., Atkins L., Leigh P.N. Health-related locus of control: does it change in motor neurone disease (MND)?. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 2003, 4(1):27-30.
19. Hardiman O., van den Berg L.H., Kiernan M.C. Clinical diagnosis and management of amyotrophic lateral sclerosis. Nature Reviews Neurology 2011, 7(11):639-649.
20. 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.
21. Knight S.J., Emanuel L. Processes of adjustment to end-of-life losses: a reintegration model. Journal of Palliative Medicine 2007, 10(5):1190-1198.
22. Kutner J.S., Steiner J.F., Corbett K.K., Jahnigen D.W., Barton P.L. Information needs in terminal illness. Social Science & Medicine 1999, 48(10):1341-1352.
23. 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.
24. Miller R.G., Jackson C.E., Kasarskis E.J., England J.D., Forshew D., Johnston W., et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009, 73(15):1218-1226.
25. Miller R.G., Jackson C.E., Kasarskis E.J., England J.D., Forshew D., Johnston W., et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioural impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009, 73(15):1227-1233.
26. Morse J.M. Sampling in grounded theory. The SAGE handbook of grounded theory 2007, 229-244. Sage, London. A. Bryant, K. Charmaz (Eds.).
27. Murray J.A. Loss as a universal concept: a review of the literature to identify common aspects of loss in diverse situations. Journal of Loss and Trauma 2001, 6(3):219-241.
28. Oliver D., Borasio G.D., Walsh D. Palliative care in amyotrophic lateral sclerosis. From diagnosis to bereavement 2006, Oxford University Press, Oxford.
29. O'Brien M.R., Whitehead B., Murphy P.N., Mitchell J.D., Jack B.A. Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?. Palliative Medicine 2012, 26(2):123-131.
30. Plahuta J.M., McCulloch B.J., Kasarskis E.J., Ross M.A., Walter R.A., McDonald E.R. Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. Social Science & Medicine 2002, 55(12):2131-2140.
31. QSR International NVivo qualitative data analysis software. Version 9 2010, QSR International Pty Ltd.
32. Ranchor A.V., Wardle J., Steptoe A., Henselmans I., Ormel J., Sanderman R. The adaptive role of perceived control before and after cancer diagnosis: a prospective study. Social Science & Medicine 2010, 70(11):1825-1831.
33. 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.
34. Rodriguez K.L., Young A.J. Patients' and healthcare providers' understandings of life-sustaining treatment: are perceptions of goals shared or divergent?. Social Science & Medicine 2006, 62(1):125-133.
35. Sakellariou D., Boniface G., Brown P. Experiences of living with motor neurone disease: a review of qualitative research. Disability and Rehabilitation 2013, 35(21):1765-1773.
36. Sulmasy D.P., Hughes M.T., Thompson R.E., Astrow A.B., Terry P.B., Kub J., et al. 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.
37. Traynor B.J., Alexander M., Corr B., Frost E., Hardiman O. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. Journal of Neurology, Neurosurgery and Psychiatry 2003, 74(9):1258-1261.
38. Volker D.L., Wu H.L. Cancer patients' preferences for control at the end of life. Qualitative Health Research 2011, 21(12):1618-1631.
39. Wicks P., Frost J. ALS patients request more information about cognitive symptoms. European Journal of Neurology 2008, 15(5):497-500.