Lung transplant recipients’ experiences of and attitudes towards self-management: a qualitative systematic review

Abstract

Objective: The objective of this review was to identify lung transplant recipients’ experiences of and attitudes towards self-management. Introduction: Lung transplantation is an established treatment to improve the survival of patients with end-stage lung diseases and has been performed on more than 40,000 patients worldwide. The current focus of care for lung transplant recipients is long-term management. Patients need to adapt and adhere to complex self-management tasks to prevent complications and to enable them to keep the transplanted graft as long as possible. However, to date, there are no qualitative systematic reviews that identify lung transplant recipients’ experiences of and attitudes towards self-management. Inclusion criteria: This review included studies of adults over 18 years of age who had received a lung transplant and were able to perform their self-management tasks independently. All studies that investigated lung transplant recipients’ experiences of and attitudes towards self-management in any setting were eligible for inclusion. All types of studies that focused on qualitative data, including, but not limited to, phenomenology, grounded theory, ethnography, action research, and feminist research, were considered for inclusion. Mixed methods studies were included only when qualitative data could be extracted separately, and if they reported results relating to the phenomenon of interest. Studies published in English or German were considered for inclusion in this review. Methods: The search strategy aimed to find published studies using the databases Web of Science Core Collection, PsycINFO (Ovid), MEDLINE (Ovid), Embase (Ovid), Emcare (Ovid), and CINAHL (EBSCOhost). The search for unpublished studies included ProQuest Dissertations and Theses Database, EThOS, and OpenGrey. Databases were searched from inception to March 2022. Methodological quality of studies was independently assessed by 2 independent reviewers using the JBI checklist for qualitative research. A standardized data extraction tool from JBI was used by 2 reviewers for data collection. Meta-aggregation was undertaken to synthesize the data, and the final synthesis of the findings was reached through discussion. Results were graded according to ConQual. Results: Ten studies with a sample size from 8 to 73 participants from North America and Central/Northern Europe were included in the review. The critical appraisal scores of the included studies ranged from 3 to 9 out of 10. A total of 137 findings were extracted and aggregated to form 19 categories and the following 4 aggregated syntheses: i) Changes in routines, beliefs, and sense of responsibility are essential for better adaptation and self-management after lung transplantation; ii) Life after transplantation is characterized by both positive and negative feelings and experiences; iii) Better adjustment and self-management after a lung transplant require dealing with one’s own feelings and beliefs; iv) After transplantation, engaging with relatives, friends, medical team, and donors is essential to improve experiences and adapt to being a transplant recipient. Based on the ConQual scores, 2 synthesized findings were graded as moderate and 2 were graded as low. Conclusions: Nuanced emotional, social, relational, and psychological adjustment is required of lung transplant recipients to be able to successfully self-manage. Loved ones and health professionals contribute significantly to this process, but psychosocial or peer support may further facilitate this transition. Supplemental Digital Content: A German-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A46].