Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: A qualitative secondary analysis

BMJ Supportive and Palliative Care

Volumn 5, Issue 5, 2015, Pages 503-509

  O'Brien, Mary R ^a   Preston, Harriet ^b  

^a EDGE HILL UNIVERSITY   (United Kingdom)

^b St Catherine's Hospice   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; BEREAVEMENT; CAREGIVER; ENGLAND; FAMILY; FEMALE; HOSPITAL SUBDIVISIONS AND COMPONENTS; HOSPITALIZATION; HUMAN; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; PSYCHOLOGY; QUALITATIVE RESEARCH; TERMINAL CARE;

ADULT; AGED; BEREAVEMENT; CAREGIVERS; ENGLAND; FAMILY; FEMALE; HOSPITAL UNITS; HOSPITALIZATION; HUMANS; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; QUALITATIVE RESEARCH; TERMINAL CARE;

EID: 84939477034     PISSN: 2045435X     EISSN: 20454368     Source Type: Journal    
DOI: 10.1136/bmjspcare-2013-000627     Document Type: Article

References (40)

1. Forbes RB, Colville S, Cran GW, et al. Unexpected decline in survival from amyotrophic lateral sclerosis/motor neurone disease. J Neurol Neurosurg Psychiatry 2004;75:1753-5.
2. Davis M, Lou JS. Management of amyotrophic lateral sclerosis (ALS) by the family nurse practitioner: a timeline for anticipated referrals. J Am Assoc Nurse Pract 2011;23:464-72.
3. Miller RG, Rosenberg JA, Gelinas DF, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology 2009;73:1227-33.
4. Oliver D, Webb S. The involvement of specialist palliative care in the care of people with motor neurone disease. Palliat Med 2000;14:427-8.
5. McCluskey L. Palliative rehabilitation and Amyotrophic Lateral Sclerosis: a perfect match. NeuroRehabilitation 2007;22:407-8.
6. Department of Health. The National Service Framework for Long Term Conditions. London: The Stationery Office, 2005.
7. Traynor BJ, Alexander M, Corr B, et al. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. J Neurol Neurosurg Psychiatry 2003;74:1258-61.
8. Chio A, Bottachi E, Buffa C, et al. PARALS. Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry 2006;77:948-50.
9. O'Brien MR, Whitehead B, Jack BA, et al. Multidisciplinary team working in motor neurone disease: the views of patients and family carers. Br J Neurosci Nurs 2011;7:580-5.
10. Van Teijlingen ER, Friend E, Kamal AD. Service use and needs of people with motor neurone disease and their carers in Scotland. Health Soc Care Community 2001;9:397-403.
11. All Party Parliamentary Group. Inquiry into access to specialist palliative care for people with motor neurone disease in England. 2011. http://www.mndassociation.org/get-involved/campaigning-influencing/all-party-parliamentary-group-inquiryinto-palliative-care (accessed 5/11/2013).
12. Neudert C, Oliver D, Wasner M, et al. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol 2001;248:612-16.
13. Spichiger E. Living with terminal illness: patient and carer experiences of hospital end-of-life care. Int J Palliat Nurs 2008;14:220-8.
14. Rogers A, Karlsen F. 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. J Adv Nurs 2000;31:768-74.
15. Young AJ, Rogers A, Dent L, et al. Experiences of hospital care reported by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES questionnaire. J Adv Nurs 2009;65:2161-74.
16. Foley J, Timonen V, Hardiman O. Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler 2012;13:11-24.
17. Heaton J. Reworking qualitative data. London: Sage, 2004.
18. O'Brien MR, Whitehead B, Jack BA, et al. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers-a qualitative study. Amyotroph Lateral Scler 2011;12:97-104.
19. Preston H, Cohen Fineberg I, Callagher P, et al. The preferred priorities for care document in motor neurone disease: views of bereaved relatives and carers. Palliat Med 2012;26:132-8.
20. Locock L, Brown J. 'All in the same boat'? Patient and carer attitudes to peer support and social comparison in Motor Neurone Disease (MND). Soc Sci Med 2010;71:1498-505.
21. Ray RA, Brown J, Street AF. Dying with motor neurone disease, what can we learn from family caregivers? Health Expect Published Online First: 19 Apr 2012. doi: 10.1111/j.1369-7625.2012.00773.x.
22. Whitehead B, O'Brien MR, Jack BA, et al. Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med 2012;26:368-78.
23. Hugel H, Grundy N, Rigby S, et al. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lateral Scler 2006;7:161-6.
24. Hughes RA, Sinha A, Higginson I, et al. Living with motor neurone disease: lives, experiences of services and suggestions for change. Health Soc Care Community 2005;13:64-74.
25. Ng L, Khan F. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev 2009;(4):CD007425.
26. Krivickas LS, Shockley L, Mitsumoto H. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci 1997;152 (Suppl 1):S82-9.
27. Bridges J, Flatley M, Meyer J. Older people's and relatives' experiences in acute care settings: systematic review and synthesis of qualitative studies. Int J Nurs Stud 2010;47:89-107.
28. Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. London: The Stationery Office. 2013.
29. Tadd W, Hillman A, Calnan S, et al. Right place-wrong person: dignity in the acute care of older people. Qual Ageing Older Adults 2011;12:33-43.
30. Coyle J. Exploring the meaning of 'dissatisfaction' with health care: the importance of 'personal identity threat'. Sociol Health Illn 1999;21:95-124.
31. Jurgens F, Clissett P, Gladman J, et al. Why are family carers of people with dementia dissatisfied with general hospital care? A qualitative study. BMC Geriatr 2002;12:57.
32. Schoenfelder T, Klewer J, Kugler J. Determinants of patient satisfaction: a study among 39 hospitals in an in-patient setting in Germany. Int J Qual Health Care 2011;23:503-9.
33. Bolmsjo I. Existential issues in palliative care: interview of patients with amyotrophic lateral sclerosis. J Palliat Med 2001;4:499-505.
34. Cook T, Atkin H, Carter L, et al. Towards inclusive living: a case study of the impact of inclusive practice in neuro-rehabilitation/neuro-psychiatry services. 2012. http://www.ltnc.org.uk/download_files/final%20reports/April%2012/2012/2012/Inclusive%20practice:final%20report.pdf (accessed 5/11/2013).
35. NHS England Friends and Family test. http://www.england.nhs.uk/2013/07/30/nhsfft/friendsandfamilytest.
36. Mackintosh JE, Murtagh MJ, Rodgers H, et al. Why people do, or do not, immediately contact emergency medical services following the onset of acute stroke: qualitative interview study. PLoS ONE 2012;7:e46124.
37. Jackson D, Williams D, Turner-Stokes L, et al. How do carers of people with long term neurological conditions experience the provision of replacement care? Final report to the Department of Health R&D grant 053/0012. 2011. http://www.csi.kcl.ac.uk/files/Executive%20summary%20-%20Replacement%20care%20for%20LTNC%20carers%20May%202011.pdf (accessed 5/11/2013).
38. National End-of-life Care Intelligence Network. What do we know now that we didn't know a year ago? New intelligence on end-of-life care in England. Department of Health, 2012. http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now (accessed 5/11/2013).
39. Donnelly S, Battley J. Relatives' experience of the moment of death in a tertiary referral hospital. Mortality 2010;15:81-100.
40. Boslaugh S. Secondary Data Sources for Public Health: A Practical Guide. New York: Cambridge University Press, 2007.