Experience of long-term use of non-invasive ventilation in motor neuron disease: An interpretative phenomenological analysis

BMJ Supportive and Palliative Care

Volumn 4, Issue 1, 2014, Pages 50-56

  Ando, Hikari ^a   Chakrabarti, Biswajit ^b   Angus, Robert M ^b   Cousins, Rosanna ^a   Thornton, Everard W ^c   Young, Carolyn A ^d  

^a LIVERPOOL HOPE UNIVERSITY   (United Kingdom)

^b UNIVERSITY HOSPITAL AINTREE   (United Kingdom)

^c UNIVERSITY OF LIVERPOOL   (United Kingdom)

^d WALTON CENTRE FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADAPTIVE BEHAVIOR; AGED; ANIMAL; ATTITUDE TO HEALTH; COMPLICATION; DISEASE COURSE; FEMALE; HUMAN; INTERVIEW; LONG EVANS RAT; LONGITUDINAL STUDY; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; NONINVASIVE VENTILATION; PALLIATIVE THERAPY; PATIENT COMPLIANCE; PROCEDURES; PROSPECTIVE STUDY; PSYCHOLOGY; QUALITY OF LIFE; RESPIRATORY INSUFFICIENCY; STATISTICS AND NUMERICAL DATA;

ADAPTATION, PSYCHOLOGICAL; AGED; ANIMALS; ATTITUDE TO HEALTH; DISEASE PROGRESSION; FEMALE; HUMANS; INTERVIEWS AS TOPIC; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; NONINVASIVE VENTILATION; PALLIATIVE CARE; PATIENT COMPLIANCE; PROSPECTIVE STUDIES; QUALITY OF LIFE; RATS, LONG-EVANS; RESPIRATORY INSUFFICIENCY;

EID: 84923457574     PISSN: 2045435X     EISSN: 20454368     Source Type: Journal    
DOI: 10.1136/bmjspcare-2013-000494     Document Type: Article

References (30)

1. Lyall RA, Donaldson N, Fleming T, et al. A prospective study of quality of life in ALS patients treated with non-invasive ventilation. Neurology 2001;57:153-6.
2. Bourke SC, Tomlinson M, Williams TL, et al. Effect of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol 2006;5:140-7.
3. Mustfa N, Walsh E, Bryant V, et al. The effect of non-invasive ventilation on ALS patients and their caregivers. Neurology 2006;66:1211-17.
4. Cella DF. Quality of life: concepts and definition. J Pain Symptom Manage 1994;9:186-92.
5. Sundling IM, Ekman SL, Weinberg J, et al. Patients' with ALS and caregivers' experiences of non-invasive home ventilation. Adv Physiother 2009;11:114-20.
6. Lemoignan J, Ells C. Amyotrophic lateral sclerosis and assisted ventilation: how patients decide. Pallia Support Care 2010;8:207-13.
7. Baxter SK, Baird WO, Thompson S, et al. The initiation of non-invasive ventilation for patients with motor neuron disease: patient and carer perceptions of obstacles and outcomes. Amyotroph Lateral Scler 2013;14:105-10.
8. Ballangrud R, Bogsti WB, Johansson IS. Clients' experiences of living at home with a mechanical ventilator. J Adv Nurs 2009;65:425-34.
9. Goldstein RS, Psek JA, Gort EH. Home mechanical ventilation: demographics and user perspectives. Chest 1995;108:1581-6.
10. Lindahl B, Sandman PO, Rasmussen BH. Meanings of living at home on a ventilator. Nurs Inq 2003;10:19-27.
11. Phukan J, Hardiman O. The management of amyotrophic lateral sclerosis. J Neurol 2009;256:176-86.
12. Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial "Clinical limits of amyotrophic lateral sclerosis" workshop contributors. J Neurol Sci 1994;124(Suppl):96-107.
13. Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA. ed. Qualitative psychology: a practical guide to research methods. 2nd edn. London: Sage, 2008:53-80.
14. Philpin SM, Jordan SE, Warring J. Giving people a voice: reflections on conducting interviews with participants experiencing communication impairment. J Adv Nurs 2005;50:299-306.
15. Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: Sage, 2009.
16. Brocki JM, Wearden AJ. A critical evaluation of interpretative phenomenological analysis (IPA) in health psychology. Psychol Health 2006;21:87-108.
17. Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA. ed. Qualitative psychology: a practical guide to research methods. Thousand Oaks, CA: Sage, 2003:51-80.
18. Roach AR, Averill AJ, Segerstrom SC, et al. The dynamics of quality of life in ALS patients and caregivers. Ann Behav Med 2009;37:197-206.
19. Broström A, Nilsen P, Johansson P, et al. Putative facilitators and barriers for adherence to CPAP treatment in patients with obstructive sleep apnea syndrome: a qualitative content analysis. Sleep Med 2010;11:126-30.
20. Heszen-Niejodek I. Coping style and its role in coping with stressful encounters. Eur Psychol 1997;2:342-51.
21. O'Doherty LJ, Hickey A, Hardiman O. Measuring life quality, physical function and psychological well-being in neurological illness. Amyotroph Lateral Scler 2010;11:461-8.
22. Hugel H, Pih N, Dougan CP, et al. Identifying poor adaptation to a new diagnosis of motor neuron disease: a pilot study into the value of an early patient-led interview. Amyotroph Lateral Scler 2010;11:104-9.
23. Kraaij V, Granefski N, Schroevers MJ, et al. Cognitive coping, goal adjustment, and depressive and anxiety symptoms in people undergoing infertility treatment: a prospective study. J Health Psychol 2010;15:876-86.
24. Saniah AR, Zainal NZ. Anxiety, depression and coping strategies in breast cancer patients on chemotherapy. Malaysian Journal of Psychiatry 2010;19. http://mjpsychiatry.com/index. php/mjp/article/viewFile/99/91 (accessed 21 Apr 2012).
25. Harris GE, Larsen D. Understanding hope in the face of an HIV diagnosis and high-risk behaviors. J Health Psychol 2008;13:401-15.
26. Torheim H, Gjengedal E. How to cope with the mask? Experiences of mask treatment in patients with acute chronic obstructive pulmonary disease-exacerbation. Scand J Caring Sci 2009;24:499-506.
27. Plahuta JM, McCulloch BJ, Kasarskis EJ, et al. Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. Soc Sci Med 2002;55:2131-40.
28. Bohnen N, Nicolson N, Sulon J, et al. Coping style, trait anxiety and cortisol reactivity during mental stress. J Psychosom Res 1991;35:141-7.
29. King SJ, Duke MM, O'Connor BA. Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about 'ongoing change and adaptation'. J Clin Nurs 2009;18:745-54.
30. Kemp S, Morley S, Anderson E. Coping with epilepsy: do illness representations play a role? Br J Clin Psychol 1999;38:43-58.