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Lived experiences for individuals with cystic fibrosis who have undergone lung transplantation: a qualitative study
Stockholm CF Center, Karolinska University Hospital, Stockholm, Sweden.
Stockholm CF Center, Karolinska University Hospital, Stockholm, Sweden.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Faculty of Nursing and Health Sciences, Nord University, Norway.ORCID iD: 0000-0001-6011-6740
2025 (English)In: BMC Nursing, E-ISSN 1472-6955, Vol. 24, no 1, article id 127Article in journal (Refereed) Published
Abstract [en]

Background: Cystic Fibrosis (CF) significantly affects the respiratory system, often requiring lung transplantationin advanced stages. This life-saving procedure presents substantial challenges and uncertainties. While there is existing research on support and information needs post-lung transplant from various perspectives, this study aims to specifically to address the unique experiences and challenges faced by individuals with CF during both the pretransplant and post-transplant periods.

Methods: Twenty-three lung-transplanted individuals with CF participated in this exploratory qualitative study. Data was collected through individual semi-structured interviews and analyzed using inductive content analysis.

Results: Participants faced physical and mental challenges, including fatigue, depression, and anxiety. The waiting period involved isolation, dependence on family, and guilt. Post-transplant, they dealt with relief but also severe painand adjusted to a new identity. Participants highlighted the importance of taking immunosuppressive medications asprescribed, even though the regimen was complicated and these medications had side effects. Participants stressed the need for earlier and more open dialogue with healthcare professionals and better emotional preparation for the transplant process, including preparedness for pain and previously inadequately addressed concerns such as depression and anxiety. Conclusions This study underscores the significant physical and emotional challenges individuals with CF face during lung transplantation, highlighting the need for comprehensive, person-centered care. Psychological support, effective post-transplant pain management, and early palliative care may be beneficial approaches to improve the patient experience. Nurses can play a pivotal role in this process by ensuring clear communication, managing pain, educating patients on immunosuppressive regimens, and advocating for holistic care.

Place, publisher, year, edition, pages
Springer Nature, 2025. Vol. 24, no 1, article id 127
Keywords [en]
Cystic fibrosis, Individual interviews, Lung transplantation, Nurses, Nursing, Qualitative research
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-551260DOI: 10.1186/s12912-025-02774-xISI: 001413673700002PubMedID: 39901222Scopus ID: 2-s2.0-85217670020OAI: oai:DiVA.org:uu-551260DiVA, id: diva2:1939499
Funder
Region StockholmAvailable from: 2025-02-22 Created: 2025-02-22 Last updated: 2025-03-05Bibliographically approved

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