Introduction
Liver transplantation is the only effective intervention for end-stage liver disease. Despite the significant innovations in graft optimization and organ allocation processes over the past two decades, the shortage of available liver donor organs remains pressing [
1]. This has led to a longer median time on the waiting list for transplantation. Data from the United Network for Organ Sharing (UNOS) shows that nearly 1,200 patients die every year while waiting for a liver transplant [
1]. In response to the shortage of liver grafts from deceased donors, living donor liver transplantation (LDLT) has developed as an important alternative [
2]. Influenced by cultural, socio-economic and other constraints, deceased-donor liver transplantation is predominant in Europe and America unlike Asia where LDLT accounts for the majority of liver transplants [
3]. LDLT has the potential to increase the donor pool and decrease the waiting list mortality. What’s more, LDLT provides high-quality grafts for the recipients and potentially avoids dysregulation, or death due to changes in clinical status. Also LDLT has the advantage of scheduling transplantation as an elective procedure and selecting the best anatomical match [
4].
In spite of LDLT’s advantages in long-term survival outcomes for recipients [
4], it, as an invasive surgery, may cause donors to experience a series of complications after surgery, such as intra-abdominal haemorrhage, abdominal incision infection, bile leak, and even death in severe cases [
5]. The donor complication rates reported vary significantly from 24 to 67% in the literature [
6]. These postoperative complications not only affect the rehabilitation of a patient’s physical function but also challenge the recovery of the patient’s psychological functions to some extent, which decreases their long-term health-related quality of life [
7]. Several studies [
8‐
10] have reported poor postoperative psychological conditions in living liver donors, such as anxiety, depression, remorse, and post-traumatic stress disorder. The emotional stress associated with a donation may increase psychological vulnerability and lead to mental health problems. In addition, donation-related interpersonal relationships and financial strains were noted [
11,
12]. A study [
13] conducted by Ordin et al. indicated that living liver donors need physical care and psychosocial support after surgery to cope with psychological, social, and financial problems. Thus, fully understanding and exploring the real lived experience of living liver donors can promptly identify the possible needs, which is conducive to providing targeted support interventions to help donors recover better and return to normal life.
The majority of previous studies regarding living liver donors after surgery have focused on immediate and long-term medical outcomes with quantitative methods, including investigations of surgical complications, psychological and socioeconomic complications, fast recovery strategies and health-related quality of life [
14]. Due to the limitations of quantitative review studies in terms of understanding living liver donors’ everyday experiences, an increasing number of studies have explored the experiences of living liver donors through qualitative methods. These studies have employed various qualitative methodological approaches and have various foci (e.g., complications, the donor-recipient relationship, postoperative coping experiences, transplant information needs, and donation decision-making). However, the diversity of these qualitative studies and the differences in their findings have made it difficult to gain a fuller understanding of the real lived experiences of living liver donors. Therefore, this meta-synthesis aimed to analyse, interpret, and synthesize previous qualitative studies that explored living liver donors’ experiences.
Methods
Study design
We registered this qualitative meta-synthesis on PROSPERO (PROSPERO CRD42022328947) and reported our findings in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement to strengthen the completeness of reporting [
15]. We chose qualitative meta-synthesis because this research approach can preserve the meaning of individual studies while producing a new and integrated interpretation of findings and can help develop a theoretical and conceptual understanding and enhance the development of clinical practice and intervention design [
15].
Search strategy
We conducted a comprehensive search of PubMed, Embase, Web of Science, Scopus, CINAHL, Cochrane, and PsycINFO databases for publications using a combination of Medical Subject Headings (MeSH) with keywords. After our first search, we conducted a manual search based on the citations of the included studies, relevant published systematic reviews, and clinical practice guidelines to collect additional eligible data. All electronic database searches were conducted from database inception to March 2024. Search terms were devised by the study team, which included a research librarian working in a third-level grade-A hospital, and subject headings were used where possible and adjusted for differences.
The following keyword combinations were used for the search: (Liver Transplantation OR Liver Transplant∗ OR Hepatic Transplant OR Hepatic Grafting OR Liver Grafting) AND (Living donors OR donor∗ OR donation) AND (qualitative research OR qualitative study OR qualitative descriptive OR qualitative method* OR qualitative methods OR qualitative analysis OR focus group OR interview OR attitude OR experience OR phenomenology OR feel* OR needs OR ground research). Only peer-reviewed qualitative studies relevant to the real feelings, inner needs, and emotional experiences of living liver donors were considered eligible for inclusion in this study. In this review, qualitative studies were defined as those using methodologies such as phenomenology, ethnography, grounded theory, hermeneutics, narrative and thematic analysis and/or studies reporting primarily textual rather than numerical analyses and findings.
Study selection
Following the search, all identified records were imported into Endnote X8 software (Clarivate Analytics, PA, USA), and duplicates were removed. Subsequently, two reviewers (L.D and Z.R.L) independently screened the titles and abstracts of the study to determine whether the study met the inclusion criteria. Full papers of abstracts were then reviewed regarding the inclusion and exclusion criteria. The inclusion criteria were as follows: (1) the samples were living liver donors (≥ 18 years); (2) the study focused on the real feelings, inner needs, and emotional experiences of living liver donors after surgery; (3) the study used a qualitative design; and (4) the study was published in English in peer-reviewed journals. Exclusion criteria were as follows: (1) unavailable full text or incomplete data in the literature; (2) repeated publication; and (3) studies including only clinicians’ views and experiences of caregivers on liver transplant. Additionally, the reasons for the exclusion of full-text papers were recorded. Discrepancies between the reviewers at each stage of the study selection process were resolved through discussion and assessed independently by a third reviewer in the research group when necessary.
Appraisal of methodological quality
Two reviewers (L.D and F.C.L) who had received systematic training in qualitative research independently evaluated the quality of the included studies using the 10-item Joanna Briggs Institute Critical Appraisal Checklist [
16]. This checklist, used for evaluating the quality of reports on qualitative research outcomes, was selected because it was found to be the most coherent tool compared with other appraisal methods for qualitative research [
17]. Disagreements between the reviewers regarding the risk of bias in the quality assessment of the included studies were resolved by discussion, and a third reviewer was involved in this process when necessary. A minimum of ‘yes’ for six domains was required for inclusion in previous studies [
18].
Data extraction and synthesis
After confirming the eligibility of studies, the two reviewers independently extracted relevant data, including author, year of publication, aims or purpose of the study, donor-recipient type, sample, methodology, data collection and analysis, and themes. An arbitrator was consulted in cases of disagreement between the two reviewers.
We used Thomas and Hardens’ three-stage thematic synthesis approach [
19]: (i) line-by-line coding of relevant texts; (ii) organization of codes into descriptive themes; and (iii) development of analytical themes. Microsoft Word was used to assist with the data synthesis. The first reviewer (L.D) carefully read the included studies to obtain an adequate understanding and coded the relevant extractions from these texts that captured the meaning of each sentence line by line. The codes were compared, consolidated and then grouped into descriptive themes. Finally, descriptive themes were developed and further interpreted to develop analytical themes. All coded data were re-examined by the first reviewer to ensure consistency and to determine whether additional coding was necessary. A second reviewer (Z.R.L) reviewed the codes, and disagreements were resolved through discussion throughout the process if necessary. Two reviewers compared the coded data and common themes across studies to establish concepts that pertained to more than one study, which can constitute a synthesis.
Rigor, trustworthiness, and reflexivity
Our study illuminated different themes by analyzing quotations from participants, not the authors’ themes or interpretations. The multidisciplinary team included academic nurses (role: aim development and interpretation), research assistants (role: data analysis, and synthesis), and a librarian (role: literature search) in a third-level grade-A hospital. L.D, was an MSc student and is interested in the experience of living liver donors. Z.R.L, is now a PhD student conducting research in the same area. F.Y.L and F.C.L have clinical and research experience relevant to the study topic. L.Z has research expertise in qualitative research and is currently engaged in research on symptom experience in liver transplant recipients. The nursing and research assistants were trained in the use of qualitative methods before conducting the study. Team members communicated regularly via WeChat meetings and face-to-face group discussions to conduct the meta-synthesis. Disagreements were resolved through discussion and, if necessary, evaluation by a third reviewer (L.Z). We presented our analytical themes to five people who had donated a liver to their family members and incorporated their suggestions into the final analytical themes.
Discussion
This review identified, compared and synthesized nine qualitative articles with the aim of exploring the lived experiences of living liver donors. Four themes emerged: facing a life-changing situation, experiencing changes in interpersonal relationships, coping with changes and achieving personal growth.
First, the theme of facing a life-changing situation showed that living liver donors experienced physical trauma and psychological changes following surgery. Most donors described a variety of physical changes after surgery in the studies included in this review. This finding supports a previously reported systematic review [
7] that included 13 prospective longitudinal studies and concluded that living liver donors reported decreased physical functioning after surgery that were returning to pre-donation levels by two years post-donation. A study [
29] with the longest mean follow-up period of 11.5 years revealed that living liver donors continue to maintain excellent quality of life outcomes up to 20 years after donation and return to their normal daily life without any reported lasting physical or psychosocial concerns. In addition, psychological changes have also been observed in living liver donors after surgery. For example, donors not only report experiencing feelings of loneliness, helplessness, vulnerability, hurt and neglect and great concern for the recipient after surgery, but also report positive emotions such as pride, joy, certainty, confidence and gratitude. This finding is consistent with Kisch et al.’s [
30] review in 2018. Negativity causes donors to feel vulnerable and adversely affects donor access to mental health, while worry about recipients, lack of psychological support, and uncertainty about the future often exacerbate donor psychological distress. Positive psychology posits that positive psychological traits are a manifestation of psychological defence, which can help individuals develop positive psychological coping strategies. Studies [
31,
32] have shown that positive emotions are adaptive and can enhance an individual’s psychological function and social connection, increase well-being, reduce physical and mental health risks, and ultimately help donors adapt to recovery more effectively. The combined results of this study indicated that donor-reported positive psychological changes overlapped with published finding [
33,
34]. For example, many donors feel increased self-esteem and self-affirmation and exhibit positive lifestyle changes. As discussed in the study conducted by Rudow et al. in 2014 [
31], the donors after liver transplantation had greater life expectation. Therefore, from the perspective of positive psychology, the transplant team, including nurses and coordinators, should fully understand the donor’s psychological experience, pay attention to the positive role of psychological traits, take into account the personality traits of living donors and recipient’s disease stage, and jointly explore the supporting factors of positive psychological experience in the living liver donor, ensuring that the donor’s positive psychological state can be well adapted and maintained to the greatest extent and the influence of the negative emotions of the donor can be reduced, especially in cases of poor donor or recipient outcomes.
Subsequently, we observed changes in the interpersonal relationships experienced by donors as part of their lived experience. At least 6 of the 11 studies we reviewed included descriptions of relationship changes (e.g., receiver related, partner related and integral family related). Similarly, the “donor-recipient relationship after living kidney donation” emerged as the main issue in a recent systematic review [
35], which focused specifically on the psychological impact of living kidney donation on donors. This review [
35] and other studies [
36‐
38] have shown that relationships among donors and recipients and their families rarely deteriorate after transplant; in fact, they often remain the same or even improve. Assessing the relationship between the recipient and donor is a key component of the psycho-social assessment of the transplant process. Facilitating access to post-transplant psychological support with the aim of addressing potentially deteriorating relationship changes may help living donors adjust to changes in relationship dynamics more effectively, which in turn may contribute to improving their psycho-social and transplant outcomes [
39]. Gift-exchange theory [
40] provides a logical explanation for changes in the donor-recipient relationship, and this understanding should help the transplant team assist donors, recipients, and their families throughout the process.
The integrated results of this study suggest that positive personal responses and support from multiple sources can help donors cope with donation more effectively. Only by establishing and maintaining a good support system for living liver donors in an all-around way with the aim of meeting their support needs can the physical and mental health of living liver donors be effectively achieved and maintained [
41‐
44]. Therefore, targeted support should be given based on the specific circumstances of the donor in question. In terms of information support, the transplantation team should provide the donor with sufficient information about the operation to help the living liver donor understand the overall process, procedures and risks associated with donation [
43]. Simultaneously, to alleviate the financial difficulties of donors, it is necessary to expand the public burden of financial assistance and expenses and to increase financial assistance throughout the entire donation process, including donor suitability checks during the donation process, surgery and nursing care, and post-donation health checks [
45]. At the family level, transplant families should be encouraged to participate in the procedure as much as possible, strengthen care for donors, to promote emotional communication with transplant donors, establish a multidimensional support model, reduce the psychological burden of donors, and encourage donors to respond more actively to life after donation [
46]. With the multidisciplinary cooperation of medical staff, social workers and transplant coordinators, liver donors can be provided with continuous post-donation social adjustment counselling and emotional support to help them return to normal and maintain their quality of life [
47].
The theme of “achieving personal growth” showed that living liver donors undergo a transformative journey encompassing both physical recuperation and psychological challenges, culminating in positive personal growth. Living donation implies reciprocity, as the living donor donates a fragment of their liver with the intention of giving life or health to another person. In return, the donor feels that his or her life is given greater meaning, leading to a profound appreciation of life. Some liver donors even compared the donation experience to the greatness of giving birth, reflecting the giving of life in different ways [
16]. This finding was consistent with a recent review [
48], which demonstrated that living kidney donors gained benefits from the donation experience. Despite the relative absence of discussions in the earlier review [
30,
49] related to the positive personal growth of living donors, our findings supported the results of other studies [
50,
51]. Other studies have found that the act of donation appears to be a catalyst for positive long term personal growth. These findings help to bolster the ethical argument in favour of living liver donation. In addition, it’s important to recognize that the lived experience of living liver donors may vary depending on the relationship between the donor and the recipient. However, comparisons to elucidate the differences in experiences between directed liver donors and nondirected donors are limited due to the sparsity of data on anonymous liver donors. In the case of directed liver donors, the majority of these individuals are from first-degree relatives, spouses, or partners [
52]. These donors frequently describe their donation as a rebirth of a loved one [
53]. Nondirected donors, who donate organs to someone in need, tend to view their donation as a gift exchange, giving and receiving a gift-reciprocity [
54].
Implications
This study systematically reviewed and analyzed the lived experiences of living liver donors after surgery, and its results can help transplant teams obtain comprehensive insights into the inner world of living liver donors and could inform tailored care. Specifically, transplant teams should pay more attention to donors’ physical, psychological, and social changes after surgery, closely monitor the physical problems of liver donors in the short-term, and provide ongoing psychological counselling and family support to help living liver donors return to the normal life. Especially those for donors or recipients with poor outcomes should be treated as a vulnerable group requiring increased attention and continued follow-up after donation. More importantly, this study provides an understanding of positive personal growth in living liver donors. Living donors who have had positive experiences help potential donors gain a deeper understanding of the donation process by sharing their personal experiences and providing emotional support, empowering them to make informed and confident decisions. Future nursing research should focus on the positive aspects of living liver donors and explore how these positive aspects can be facilitated and maximised to help living liver donors achieve their optimal level of functioning.
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