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Research Article

Living with Advanced Chronic Obstructive Pulmonary Disease: A Qualitative Interview Study with Patients and Informal Carers

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Pages 410-418 | Received 10 Jan 2020, Accepted 10 Jun 2020, Published online: 25 Jun 2020

References

  • World Health Organization. Burden of COPD. 2014. [cited 2018 Sept 10]. Available from: http://www.who.int/respiratory/copd/burden/en.
  • Global Initiative for Chronic Obstructive Lung Disease (GOLD). Global Strategy for the Diagnosis, Management, and Prevention of COPD. 2017. [cited 2018 Sept 10]. http://goldcopd.org/gold-2017-global-strategy-diagnosis-management-prevention-copd.
  • Gershon AS, Warner L, Cascagnette P, et al. Lifetime risk of developing chronic obstructive pulmonary disease: a longitudinal population study. Lancet. 2011;378(9795):991–996. doi:10.1016/S0140-6736(11)60990-2.
  • Sorenson HM. Improving end-of-life care for patients with chronic obstructive pulmonary disease. Ther Adv Respir Dis. 2013;7(6):320–326. doi:10.1177/1753465813504803.
  • O'Donnell DE, Ora J, Webb KA, et al. Mechanisms of activity-related dyspnea in pulmonary diseases. Respir Physiol Neurobiol. 2009;167(1):116–132. doi:10.1016/j.resp.2009.01.010.
  • Hayle C, Coventry PA, Gomm S, et al. Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study. Palliat Med. 2013;27(9):861–868. doi:10.1177/0269216313486719.
  • World Health Organization. Palliative care. 2017. [cited 2018 Sept 10]. http://www.who.int/cancer/palliative/definition/en.
  • Cawley D, Billings J, Oliver D, et al. Potential triggers for the holistic assessment of people with severe chronic obstructive pulmonary disease: analysis of multiperspective, serial qualitative interviews. BMJ Support Palliat Care. 2014;4(2):152–160. doi:10.1136/bmjspcare-2013-000629.
  • Pinnock H, Kendall M, Murray SA, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ. 2011;342:d142. doi:10.1136/bmj.d142.
  • Smallwood N, Moran T, Thompson M, et al. Integrated respiratory and palliative care leads to high levels of satisfaction: a survey of patients and carers. BMC Palliat Care. 2019;18(1):7. doi:10.1186/s12904-019-0390-0.
  • den Herder-van der Eerden M, Hasselaar J, Payne S, et al. How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries. Palliat Med. 2017; 31(10):946–955. doi:10.1177/0269216317697898.
  • Elkington H, White P, Addington-Hall J, et al. The last year of life of COPD: a qualitative study of symptoms and services. Respir Med. 2004;98(5):439–445. doi:10.1016/j.rmed.2003.11.006.
  • Nakken N, Janssen DJA, van den Bogaart EHA, et al. Informal caregivers of patients with COPD: Home sweet home? Eur Respir Rev. 2015;24(137):498–504. doi:10.1183/16000617.00010114.
  • Seamark DA, Blake SD, Seamark CJ, et al. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers: an interpretative phenomenological analysis. Palliat Med. 2004;18(7):619–625. doi:10.1191/0269216304pm928oa.
  • Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi:10.1093/intqhc/mzm042.
  • Ando H, Cousins R, Young C. Achieving saturation in thematic analysis: development and refinement of a codebook. Compr Psychol. 2014;3:1–7. doi:10.2466/03.CP.3.4.
  • Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. London: SAGE Publications; 2013.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa.
  • Gardiner C, Gott M, Small N, et al. Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying. Palliat Med. 2009;23(8):691–697. doi:10.1177/0269216309107003.
  • Barnett M. Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences. J Clin Nurs. 2005;14(7):805–812. doi:10.1111/j.1365-2702.2005.01125.x.
  • Panos RJ, Krywkowski-Mohn SM, Sherman SN, et al. Patient reported determinants of health: a qualitative analysis of veterans with chronic obstructive pulmonary disease. COPD. 2013;10(3):333–347. doi:10.3109/15412555.2012.752805.
  • Disler RT, Green A, Luckett T, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage. 2014;48(6):1182–1199. doi:10.1016/j.jpainsymman.2014.03.009.
  • Iyer AS, Dionne-Odom JN, Ford SM, et al. A formative evaluation of patient and family caregiver perspectives on early palliative care in chronic obstructive pulmonary disease across disease severity. Annals ATS. 2019;16(8):1024–1033. doi:10.1513/AnnalsATS.201902-112OC.
  • Lindqvist G, Hallberg L. Feelings of guilt due to self-inflicted disease: a grounded theory of suffering from chronic obstructive pulmonary disease (COPD). J Health Psychol. 2010;15(3):456–466. doi:10.1177/1359105309353646.
  • Berger BE, Kapella MC, Larson JL. The experience of stigma in chronic obstructive pulmonary disease. West J Nurs Res. 2011;33(7):916–932. doi:10.1177/0193945910384602.
  • Halding AG, Heggdal K, Wahl A. Experiences of self-blame and stigmatisation for self-infliction among individuals living with COPD. Scand J Caring Sci. 2011;25(1):100–107. doi:10.1111/j.1471-6712.2010.00796.x.
  • Johnson MJ. Management of end stage cardiac failure. Postgrad Med J. 2007;83(980):395–401. doi:10.1136/pgmj.2006.055723.
  • Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002;325(7370):929. doi:10.1136/bmj.325.7370.929.
  • Hill K, Vogiatzis I, Burtin C. The importance of components of pulmonary rehabilitation, other than exercise training, in COPD. Eur Respir Rev. 2013;22(129):405–413. doi:10.1183/09059180.00002913.
  • Hynes G, Stokes A, McCarron M. Informal care-giving in advanced chronic obstructive pulmonary disease: lay knowledge and experience. J Clin Nurs. 2012;21(7–8):1068–1077. doi:10.1111/j.1365-2702.2011.03944.x.
  • Epiphaniou E, Shipman C, Harding R, et al. Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study. Primary Care Respir J. 2014;23(1):46–51. doi:10.4104/pcrj.2014.00004.
  • Fusi-Schmidhauser T, Riglietti A, Froggatt K, et al. Palliative care provision for patients with advanced chronic obstructive pulmonary disease: a systematic integrative literature review. COPD. 2018;15(6):600–611. doi:10.1080/15412555.2019.1566893.
  • Ek K, Sahlberg-Blom E, Andershed B, et al. Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs. 2011;67(7):1480–1490. doi:10.1111/j.1365-2648.2010.05604.x.

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