Experiences and challenges of caregivers for patients with chronic obstructive pulmonary disease during six months post-hospital discharge: Qualitative analysis
Keywords:
Chronic Obstructive Pulmonary Disease, Caregiver, quality of lifeAbstract
Background and aim:
Chronic obstructive pulmonary disease (COPD) is a progressive respiratory disease with a high incidence of exacerbations and hospitalisation. Caregivers, after hospital discharge, play a central role in the management of the disease without often adequate support. This study aims to explore the experiences of caregivers of patients with COPD in the six months after hospital discharge, identifying the main difficulties encountered and the impact of these challenges on the caregiver's quality of life.
Methods: A qualitative phenomenological study based on the Colazzi approach was conducted. Twenty-three caregivers who had cared for patients with COPD discharged from Italian hospitals for at least 6 months after discharge were recruited. Semi-structured, question-guided interviews were used to collect data, which were subsequently transcribed and analysed to identify the main themes underlying their experience.
Results: Four main themes emerged from the qualitative analysis: 1) Challenges in daily management of the disease, 2) Emotional and psychological impact, 3) Relationship with health professionals and 4) Impact on quality of life. Caregivers described difficulties in administering therapy, managing symptoms and making environmental adjustments. They also reported high levels of stress, anxiety and a sense of overload, as well as difficulties in communicating with the healthcare team and finding the resources needed for optimal care.
Conclusions: The experiences of caregivers of patients with COPD highlight the need for greater practical and emotional support from healthcare professionals, especially regarding disease management and psychological well-being.
References
1. GBD Chronic Respiratory Disease Collaborators. Prevalence and attributable health burden of chronic respiratory diseases, 1990-2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet Respir Med. 2020;8(6):585-96. doi: 10.1016/S2213-2600(20)30105-3
2. Global Initiative for Chronic Obstructive Lung Disease. 2025 GOLD Report. [Internet]. 2025. Available from: https://goldcopd.org/2025-gold-report/. Accessed: 2025 Nov 19.
3. Ammous O, Andreas S, Friede T, et al. Adherence enhancing interventions for pharmacological and oxygen therapy in patients with COPD: protocol for a systematic review and component network meta-analyses. Syst Rev. 2023;12(1):159. doi: 10.1186/s13643-023-02326-x
4. Criner GJ, Bourbeau J, Diekemper RL, et al. Prevention of acute exacerbations of COPD: American College of Chest Physicians and Canadian Thoracic Society guideline. Chest. 2015;147(4):894-942. doi: 10.1378/chest.14-1676
5. World Health Organization. Chronic obstructive pulmonary disease (COPD). [Internet]. Available from: https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd). Accessed: 2025 Nov 19.
6. Tsai SH, Hung JY, Su PF, et al. Chronic obstructive pulmonary disease trajectory: severe exacerbations and dynamic change in health-related quality of life. BMJ Open Respir Res. 2024;11(1):e002037. doi: 10.1136/bmjresp-2023-002037
7. Cai M, Cui M, Nong Y, Qin J, Mo S. A longitudinal study of trajectories and factors influencing patient-reported outcomes in chronic obstructive pulmonary disease. Int J Chron Obstruct Pulmon Dis. 2022;17:2945-56. doi: 10.2147/COPD.S374129
8. Andersen IC, Thomsen TG, Bruun P, et al. Patients’ and their family members’ experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: a phenomenological-hermeneutic study. J Clin Nurs. 2017;26(23-24):4877-89. doi: 10.1111/jocn.13963
9. Bagnasco A, Rosa F, Dasso N, et al. Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: a phenomenological study of family caregivers’ experiences. J Clin Nurs. 2021;30(15-16):2246-57. doi: 10.1111/jocn.15613
10. Ivziku D, Clari M, Piredda M, De Marinis MG, Matarese M. Anxiety, depression and quality of life in chronic obstructive pulmonary disease patients and caregivers: an actor-partner interdependence model analysis. Qual Life Res. 2019;28(2):461-72. doi: 10.1007/s11136-018-2024-z
11. Gholami S, Chinonyerem D, Cooper EJ, Kuwornu JP. Understanding the unmet needs, experiences, and perspectives of COPD caregivers: a scoping review. COPD. 2025;22(1):2481260. doi: 10.1080/15412555.2025.2481260
12. Li Y, Yan F, Jiang L, Zhen W, Li X, Wang H. Epidemiological trends and risk factors of chronic obstructive pulmonary disease in young individuals based on the 2021 global burden of disease data (1990-2021). BMC Pulm Med. 2025;25(1):174. doi: 10.1186/s12890-025-03630-z
13. Gui D, Zhang L, Wang C, et al. Analysis and prediction of the burden of COPD in original BRICS countries from 1990 to 2050. Expert Rev Respir Med. 2025;1-10. doi: 10.1080/17476348.2025.2488961
14. Sigurgeirsdottir J, Halldorsdottir S, Arnardottir RH, Gudmundsson G, Bjornsson EH. Frustrated caring: family members’ experience of motivating COPD patients towards self-management. Int J Chron Obstruct Pulmon Dis. 2020;15:2953-65. doi: 10.2147/COPD.S273903
15. Cai Y, Zhang Z, Ren X, Chen O. Coping with chronic obstructive pulmonary disease together: a dyadic study of self-care and quality of life in patients and their caregivers. J Clin Nurs. 2025;34(8):3297-306. doi: 10.1111/jocn.17513
16. Au DH, Collins MP, Berger DB, et al. Health system approach to improve chronic obstructive pulmonary disease care after hospital discharge: stepped-wedge clinical trial. Am J Respir Crit Care Med. 2022;205(11):1281-9. doi: 10.1164/rccm.202107-1707OC
17. Colaizzi PF. Psychological research as the phenomenologist views it. In: Valle RS, King M, eds. Existential-phenomenological alternatives for psychology. New York: Oxford University Press; 1978. p. 48-71.
18. Mortari L. Apprendere dall’esperienza. Il pensare riflessivo nella formazione. Roma: Carocci; 2007.
19. Utens CMA, van Schayck OCP, Goossens LMA, et al. Informal caregiver strain, preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: results of a randomised controlled trial. Int J Nurs Stud. 2014;51(8):1093-102. doi: 10.1016/j.ijnurstu.2014.01.002
20. Bove DG, Zakrisson AB, Midtgaard J, Lomborg K, Overgaard D. Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD. J Clin Nurs. 2016;25(3-4):483-93. doi: 10.1111/jocn.13076
21. Figueiredo D, Gabriel R, Jácome C, Marques A. Caring for people with early and advanced chronic obstructive pulmonary disease: how do family carers cope? J Clin Nurs. 2014;23(1-2):211-20. doi: 10.1111/jocn.12363
22. Hahn-Goldberg S, Jeffs L, Troup A, et al. ‘We are doing it together’: the integral role of caregivers in a patients’ transition home from the medicine unit. PLoS One. 2018;13(5):e0197831. doi: 10.1371/journal.pone.0197831
23. Schroedl CJ, Yount SE, Szmuilowicz E, Hutchison PJ, Rosenberg SR, Kalhan R. A qualitative study of unmet healthcare needs in chronic obstructive pulmonary disease. A potential role for specialist palliative care? Ann Am Thorac Soc. 2014;11(9):1433-8. doi: 10.1513/AnnalsATS.201404-155BC
24. Aasbø G, Solbrække KN, Kristvik E, Werner A. Between disruption and continuity: challenges in maintaining the ‘biographical we’ when caring for a partner with a severe, chronic illness. Sociol Health Illn. 2016;38(5):782-96. doi: 10.1111/1467-9566.12396
25. Andersen IC, Thomsen TG, Bruun P, Bødtger U, Hounsgaard L. Between hope and hopelessness: COPD patients’ and their family members’ experiences of interacting with healthcare providers - a qualitative longitudinal study. Scand J Caring Sci. 2018;32(3):1197-206. doi: 10.1111/scs.12565
26. Strang S, Fährn J, Strang P, Ronstad A, Danielsson L. Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals. BMJ Open. 2019;9(8):e028720. doi: 10.1136/bmjopen-2018-028720
27. Scheerens C, Deliens L, Van Belle S, Joos G, Pype P, Chambaere K. ‘A palliative end-stage COPD patient does not exist’: a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD. NPJ Prim Care Respir Med. 2018;28(1):23. doi: 10.1038/s41533-018-0091-9
28. Risør MB, Spigt M, Iversen R, et al. The complexity of managing COPD exacerbations: a grounded theory study of European general practice. BMJ Open. 2013;3(12):e003861. doi: 10.1136/bmjopen-2013-003861
29. Iroegbu C, Tuot DS, Lewis L, Matura LA. The influence of patient-provider communication on self-management among patients with chronic illness: a systematic mixed studies review. J Adv Nurs. 2025;81(4):1678-99. doi: 10.1111/jan.16492
30. Banfi P, Cappuccio A, Latella ME, Reale L, Muscianisi E, Marini MG. Narrative medicine to improve the management and quality of life of patients with COPD: the first experience applying parallelchart in Italy. Int J Chron Obstruct Pulmon Dis. 2018;13:287-97. doi: 10.2147/COPD.S148685
31. Lopez-Anuarbe M, Kohli P. Understanding male caregivers’ emotional, financial, and physical burden in the United States. Healthcare (Basel). 2019;7(2):72. doi: 10.3390/healthcare7020072
32. Noonan MC, Wingham J, Taylor RS. ‘Who cares?’ The experiences of caregivers of adults living with heart failure, chronic obstructive pulmonary disease and coronary artery disease: a mixed methods systematic review. BMJ Open. 2018;8(7):e020927. doi: 10.1136/bmjopen-2017-020927
33. Jarab A, Alefishat E, Mukattash T, Alzoubi K, Pinto S. Patients’ perspective of the impact of COPD on quality of life: a focus group study for patients with COPD. Int J Clin Pharm. 2018;40(3):573-9. doi: 10.1007/s11096-018-0614-z
34. 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
35. Marques A, Cruz J, Brooks D. Interventions to support informal caregivers of people with chronic obstructive pulmonary disease: a systematic literature review. Respiration. 2021;100(12):1230-42. doi: 10.1159/000517032
36. Bilgin A, Ozdemir L. Interventions to improve the preparedness to care for family caregivers of cancer patients. Cancer Nurs. 2022;45(3):E689-705. doi: 10.1097/NCC.0000000000001014
37. Li R, Li Y, Xiong C, Gao W. Burden of chronic obstructive pulmonary disease in China: an analysis based on the GBD 2021 compared with the United States. PLoS One. 2025;20(4):e0321470. doi: 10.1371/journal.pone.0321470
38. Boers E, Allen A, Barrett M, et al. Forecasting the global economic and health burden of COPD from 2025 through 2050. Chest. 2025;S0012-3692(25)00435-0. doi: 10.1016/j.chest.2025.03.029
39. Farmer MJS, Callahan C, Riska K, Hughes AM, Stefan MS. Identifying themes to inform nursing decisions when caring for patients with acute exacerbation of chronic obstructive pulmonary disease on noninvasive ventilation: a qualitative descriptive study. Res Nurs Health. 2022;45(6):707-16. doi: 10.1002/nur.22260
40. Rafii F, Alinejad-Naeini M, Soleymani Babadi A, Shahriari E, Heidari Beni F. Facilitators and barriers to self-management in Iranian men with chronic obstructive pulmonary disease: a qualitative study. BMJ Open Respir Res. 2024;11(1):e002245. doi: 10.1136/bmjresp-2023-002245
41. O’Toole J, Krishnan M, Riekert K, Eakin MN. Understanding barriers to and strategies for medication adherence in COPD: a qualitative study. BMC Pulm Med. 2022;22(1):98. doi: 10.1186/s12890-022-01892-5
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Copyright (c) 2026 Tatiana Bolgeo, Francesca Gambalunga, Elisa Ferraro, Carlo Cerruti, Laura Iacorossi, Federico Ruta, Menada Gardalini, Roberta Di Matteo, Antonio Maconi
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