Meaning of living with severe chronic obstructive lung disease: A qualitative study

BMJ Open

Volumn 6, Issue 12, 2016, Pages

  Marx, Gabriella ^a   Nasse, Maximilian ^a   Stanze, Henrikje ^a,b   Boakye, Sonja Owusu ^a   Nauck, Friedemann ^a   Schneider, Nils ^b  

^a UNIVERSITY MEDICAL CENTER GÖTTINGEN   (Germany)

^b HANNOVER MEDICAL SCHOOL   (Germany)

Author keywords

General Practice; Patients' Perspectives; QUALITATIVE RESEARCH

Indexed keywords

ADULT; AGED; ARTICLE; CHRONIC OBSTRUCTIVE LUNG DISEASE; CLINICAL ARTICLE; COMMUNITY CARE; DISEASE COURSE; DISEASE SEVERITY; DYSPNEA; FEMALE; GERMANY; GROUNDED THEORY; HELPLESSNESS; HUMAN; LIFE; LIMITED MOBILITY; LONGITUDINAL STUDY; MALE; PATIENT ATTITUDE; QUALITATIVE RESEARCH; RESPONSIBILITY; SEMI STRUCTURED INTERVIEW; SOCIAL ISOLATION; CHRONIC DISEASE; COMPLICATION; COPING BEHAVIOR; DENIAL; MENTAL STRESS; MIDDLE AGED; PALLIATIVE THERAPY; PSYCHOLOGY; QUALITY OF LIFE;

ADAPTATION, PSYCHOLOGICAL; AGED; CHRONIC DISEASE; DENIAL (PSYCHOLOGY); DYSPNEA; FEMALE; GERMANY; HUMANS; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; PALLIATIVE CARE; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE; QUALITATIVE RESEARCH; QUALITY OF LIFE; SOCIAL ISOLATION; STRESS, PSYCHOLOGICAL;

EID: 85003889035     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2016-011555     Document Type: Article

References (36)

1. WHO. Burden of COPD. Chronic respiratory diseases. (cited 5 January 2015). http://www.who.int/respiratory/copd/burden/en/2. Sterbefälle insgesamt 2011 nach den 10 häufigsten Todesursachen Der ICD-10 2011 [Mortality 2011]. (cited 27 February 2014). https://www.destatis.de/DE/ZahlenFakten/GesellschaftStaat/Gesundheit/Todesursachen/Tabellen/SterbefaelleInsgesamt.html
2. Vogelmeier C, Buhl R, Criée C, et al. Leitlinie Der Deutschen Atemwegsliga und Der Deutschen Gesellschaft für Pneumologie und Beatmungsmedizin zur Diagnostik und Therapie von Patienten mit chronisch obstruktiver Bronchitis und Lungenemphysem (COPD). Pneumologie 2007; 61: e1-40
3. Global Initiative for Chronic Obstructive Lung Disease (GOLD). Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. 2010. http://www.goldcopd. org/uploads/users/files/GOLDReport-April112011.pdf
4. Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ 2005; 330: 1007-11
5. Bausewein C, Booth S, Gysels M, et al. Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study. Palliat Med 2010; 24: 777-86
6. Giacomini M, DeJean D, Simeonov D, et al. Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser 2012; 12: 1-47
7. 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
8. Tsiligianni I, Kocks J, Tzanakis N, et al. Factors that influence disease-specific quality of life or health status in patients with COPD: a review and meta-Analysis of Pearson correlations. Prim Care Respir J 2011; 20: 257
9. Saltnes SS, Storhaug K, Borge CR, et al. Oral health-related quality-of-life and mental health in individuals with chronic obstructive pulmonary disease (COPD). Acta Odontol Scand 2015; 73: 14-20
10. Gärtner J, Simon S, Voltz R. Palliativmedizin und fortgeschrittene, nicht heilbare Erkrankungen. Internist 2011; 52: 20-7
11. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)?. A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 55: 1000-6
12. Edmonds P, Karlsen S, Khan S, et al. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 2001; 15: 287-95
13. Habraken JM, Van Der Wal WM, ter Riet G, et al. Health-related quality of life and functional status in end-stage COPD: a longitudinal study. Eur Respir J 2011; 37: 280-8
14. Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat Care 2011; 10: 15
15. Weingaertner V, Scheve C, Gerdes V, et al. Breathlessness, functional status, distress and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage 2014; 48: 569-81.e1
16. Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonary disease. J Pain Symptom Manage 2010; 39: 555-63
17. Bausewein C, Booth S, Gysels M, et al. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010; 13: 1109-18
18. Goodridge D, Lawson J, Duggleby W, et al. Health care utilization of patients with chronic obstructive pulmonary disease and lung cancer in the last 12 months of life. Respir Med 2008; 102: 885-91
19. Marx G, Stanze H, Nauck F, Schneider N. Understanding the Needs and Perspectives of Patients with Incurable Pulmonary Disease at the End of Life and their Relatives: Protocol of a Qualitative Longitudinal Study. J Palliat Care Med 2014; 4: 177
20. Glaser BG, Strauss AL. The discovery of grounded theory strategies for qualitative research. Chicago: Aldine Pub., 1973
21. Strauss AL, Corbin JM. Basics of qualitative research: grounded theory procedures and techniques. Newbury Park, CA: Sage Publications, 1990
22. Corbin JM, Strauss AL. Grounded theory research: procedures, canons and evaluative criteria. ZfS 1990; 19: 418-27
23. Mruck K, Mey G. Grounded theory and reflexivity. In: Bryant A, Charmaz K, Eds. The sage handbook of grounded theory. London: Sage, 2010: 487-510
24. Baker C, Wuest J, Stern PN. Method slurring: the grounded theory/phenomenology example. J Adv Nurs 1992; 17: 1355-60
25. Reichertz J. Abduction: the logic of discovery of grounded theory. Forum Qual Soc Res 2010; 11: Art. 13
26. Corbin JM, Strauss AL. Weiterleben lernen: Verlauf und Bewältigung chronischer Krankheit. Bern: Huber, 2010
27. Kelle U. "Emergence vs. "forcing of empirical data?. A crucial problem of "grounded theory reconsidered. Forum Qual Soc Res 2005 revised 2012; 6: Art. 27
28. Disler RT, Currow DC, Phillips JL, et al. Interventions to support a palliative care approach in patients with chronic obstructive pulmonary disease: an integrative review. Int J Nurs Stud 2012; 49: 1443-58
29. Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. J Pain Symptom Manage 2008; 36: 451-60
30. Lunney JR, Lynn J, Foley DJ, et al. Patterns of functional decline at the end of life. JAMA 2003; 289: 2387-92
31. Hall S. World Health Organization, Regional Office for Europe. Palliative care for older people: better practices. Copenhagen: World Health Organization, Regional Office for Europe, 2011
32. World Health Organization. WHO Definition of Palliative Care. (cited 17 June 2016). http://www.who.int/cancer/palliative/definition/en/
33. Burbeck R, Candy B, Low J, et al. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliat Care 2014; 13: 3
34. Burbeck R, Low J, Sampson EL, et al. Volunteers in specialist palliative care: a survey of adult services in the United Kingdom. J Palliat Med 2014; 17: 568-74
35. Weeks LE, Macquarrie C, Bryanton O. Hospice palliative care volunteers: a unique care link. J Palliat Care 2008; 24: 85-93.
36. Herbst-Damm KL, ulik JA. Volunteer support, marital status, and the survival times of terminally ill patients. Health Psychol 2005; 24: 225-9