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Open Access 01.12.2024 | Research

The lived experience of living liver donors: A meta-synthesis of qualitative studies

verfasst von: Li Dong, Zhiru Li, Feicui Lv, Li Zheng, Fangyan Lu

Erschienen in: BMC Nursing | Ausgabe 1/2024

Abstract

Background

Living liver donors are frequently used for liver transplantation, but they experience many physical changes and psychological challenges. A better understanding of the experiences of liver donors can provide them with comprehensive and individualized patient-centred support and health care. Thus, this study sought to identify and synthesize existing qualitative studies to develop an in-depth understanding of the lived experiences of living liver donors.

Method

A meta-synthesis was conducted and reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement. Seven databases were systematically searched from inception to March, 2024, using a combination of Medical Subject Headings with keywords. The results were integrated using the three-step thematic synthesis method suggested by Thomas and Harden.

Results

Nine studies met the inclusion criteria and were included in this meta-synthesis. Four themes emerged from the meta-synthesis: (1) facing a life-changing situation, (2) experiencing changes in interpersonal relationships, (3) coping with changes, and (4) achieving personal growth.

Conclusions

Living liver donors experienced physical, psychological, and social changes after surgery, striving to manage these challenges, highlighting the importance of coping strategies and ultimately achieving personal growth. Future nursing research should focus on psychological interventions, supportive measures, and the positive aspects of living liver donors to help them achieve the optimal quality of life.

Trial registration

PROSPERO CRD42022328947.
Hinweise

Publisher’s note

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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 [810] 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.

Results

Characteristics of the included studies

Based on the initial searches, 3880 articles were retrieved, and 3380 records remained after duplicates were removed. Subsequently, during the screening of titles and abstracts, 51 studies were selected for full-text screening. Following this, two authors independently read 51 full-text articles and excluded 42 of them. Ultimately, 9 studies that met the inclusion criteria were included. The results of the search are presented in line with the PRISMA guidelines, and flow charts are shown in Fig. 1.
Among the included studies, two were conducted in the USA, two in Turkey, and one each in Canada, China, Germany, Japan, and Sweden. A total of 144 living liver donors participated in this study. Various qualitative methodologies were used, most commonly phenomenology [2022](n = 3); two studies [23, 24] used grounded theory, one study [25]used ethnography, and 3 studies [2628] did not report a specific approach, but identified the study as “qualitative”. Data were primarily gathered through interviews, and five studies reported data saturation. A broad range of data analysis methods were used, including content analysis, thematic analysis, interpretive phenomenological analysis, and grounded theory. Detailed information regarding the included studies is shown in Table 1. Most studies met most Joanna Briggs Institute criteria, and the quality appraisal of the studies is reported in Table 2.
Table 1
Characteristics of study included in Meta-analysis
Author, year
Country
Aim
Relationship
with recipient
Sampling
Method
(sample)
Design of study
Data collection, analysis, and saturation
Themes
Krause et al. 2022 [26]
Canada
To explores the nature of post-traumatic growth experienced by anonymous living liver donor
Nondirected
Convenience Sampling (26)
Qualitative
research
• In-depth, semi-structured interviews by telephone and in person
• Constant comparison method
• Not reported
• Appreciation of close others
• Perception of self
• Appreciation of personal strength
• New possibilities
• Generativity and legacy building
Ordin et al. 2021[27]
Turkey
To explore the donor-recipient relationships following living-donor liver transplantation
Directed
Convenience sampling (11)
Qualitative research
• In-depth face-to-face, semi-structured interviews;
• Thematic content analysis
• Saturation of data
• Became care providers
• Differentiation in relationship after transplantation: three sub-themes:
(1) feeling guilty, (2) becoming closer and more intense owing to a feeling of indebtedness, (3) putting some distance owing to a feeling of indebtedness.
Krespi et al. 2016[23]
Turkey
To explore living donor’s experience of life
Directed
Typical
Sampling
(16)
Grounded theory approach
• Interview
• Grounded Theory
• Not reported
• Participants evaluated their life in terms of limitations brought by organ donation surgery
• Awareness of the need for lifestyle changes
• Emotional changes
• Changes in character
• Mixed relationships
Nasr et al. 2014[25]
USA
To explore how donation influenced the emotional and
familial lives of donors.
Directed
Convenience Sampling (13)
Focused ethnographic qualitative research
• A semi-structured interview, observations, and field notes
• Thematic analysis
• Saturation of data
• A self-awareness process
• A clarification of familial relationships
• A change in perspectives on community
Weng et al. 2012[20]
China
To describe the
perceptions
of living liver transplantation and corresponding coping
strategies of living liver donors
Directed
Purposive sampling (7)
Phenomenological research
• Face-to-face tape recorded interviews
• Thematic content analysis
• Saturation of data
Core theme: maintaining peace of mind.
Four sub-themes:
• Removing themselves from information
• Viewing the surgery as common
• Having overall confidence
• Assigning value to their decision
Papachristou et al.
2009[24]
Germany
To investigate
the development of the donor–recipient relationship after LDLT
Directed
Theoretical sampling (18)
Grounded
theory approach
• A semi-structured open-ended interview
• Grounded Theory
• Saturation of data
• Changes in the relationship after donation
• No changes in the relationship
• Influence of donation on relationship
• Donation and gratitude
• Instrumentalization of the donation
Kusakabe et al. 2008[28]
Japan
To investigate the feelings of living donors about adult-to-adult liver transplantation
Directed
Snowball sampling (18)
Qualitative research
• Semi-structured interviews
• Content analysis
• Not reported
Pretransplantation:
• Reason to be a donor
• Feelings that occurred in the time between decision to donate and operation
• Feelings after medical notice that they could donate
• Matters being worried
• Feelings toward the recipient before transplantation.
Post-transplantation :
• Effects of the experience of LDLT
• Feelings toward the recipient after transplantation
Cabello et al. 2008[21]
USA
To describe the meaning of the experience of being a live liver donor
Directed
Purposive sampling
(6)
Phenomenological study
• A qualitative, in-depth, semi-structured interview
• Munhall’s phenomenological method
• Saturation of data
• No turning back-how do I live without you
• Roller coaster marathon
• Donor network
• The scar
• Reflections-time to think
Forsberg et al.
2004[22]
Sweden
To investigate the expressed deeper feelings of parents who donated a part of their liver to their own child.
Directed
Purposive sampling (11)
Interpretive phenomenological method
• In-depth unstructured interviews
• Interpretive phenomenological analysis
• Not reported
• The total lack of choice
• Facing the fear of death
• The transition from health to illness
Abbreviations: LDLT: living donor liver transplantation
Table 2
Joanna Briggs Institute critical appraisal of included studies
Author, year
Domains 1: Congruous philosophical perspective and methodology
Domains 2: Congruous methodology and research question of objectives
Domains 3: Congruous methodology and methods of data collection
Domains 4: Congruous methodology and representation and analysis of data
Domains 5: Congruous methodology and interpretation of results
Domains 6: Statement locating the researcher culturally or theoretically
Domains 7: Influence of researcher on the research, and vice-versa, addressed
Domains 8: Participants, and their voices, adequately represented
Domains 9: Ethical study according to current criteria or evidence of ethical approval
Domains 10: Conclusions flow from analysis/interpretation of the data
Krause et al. 2022[26]
unclear
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Ordin et al. 2021[27]
unclear
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Krespi et al. 2016[23]
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Nasr et al. 2014[25]
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Weng et al. 2012[20]
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Papachristou et al. 2009[24]
unclear
Yes
Yes
Yes
Yes
No
Yes
Yes
unclear
Yes
Kusakabe et al. 2008[28]
unclear
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Cabello et al. 2008[21]
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
unclear
Yes
Forsberg et al. 2004[22]
Yes
Yes
Yes
Yes
Yes
No
No
Yes
unclear
Yes

Main findings of the synthesis

Through the meta-synthesis, four themes were identified: facing a life-changing situation, experiencing changes in interpersonal relationships, coping with changes, and achieving personal growth (Fig. 2). Review of analytical themes by our consultation with 5 living liver donors elucidated the importance for personal growth. Themes with key quotations are presented below.

Theme 1: facing a life-changing situation

Donors described the donation as a life-changing event or, in some cases, as a life-saving gift [24, 25]. When asked to provide further details regarding the specifics of these life-changing situations, most donors reported having experienced a period of significant physical and/or psychological distress. Facing a situation in which they were transformed from a healthy, strong, and suitable donor to someone with a recognized illness, donors reported experiencing physical impairments, such as bowel-related issues, the expected difficulties of movement and mobility, and severe pain [21, 22, 26].
“Someone at the liver surgery unit told me that after the operation there will be a slight pain in the wound. I have to say that was a gross understatement. I could never imagine that one could be so totally paralyzed by a wound.” [22].
Although donors perceived these physical impairments as necessary “tradeoffs” (e.g., the survival of the recipient versus physical impairments), psychological distress also became a cause of concern for them. In the included studies, living liver donors experienced feelings of loneliness, helplessness, vulnerability, hurt, and neglect after surgery and expressed a desire to receive care [22, 27]; however, most health care providers and family members paid more attention to the recipient even after discharge from the hospital. Many donors continued to express strong concerns about the recipient, such as concerns regarding transplant complications, drug side effects, and test indicators [23, 28].
“After surgery, my mother and I were put in the same room. No one showed interest in me. This disinterest continued after our discharge. I always had the role of an attendant, but I needed care too.” [27].
Despite the negative aspects mentioned above, the donors reported positive emotions. As the donation was viewed as a uniquely rewarding and meaningful experience, some donors described the pride, happiness, certainty, confidence and appreciation associated with being part of a specific group and being able to try their best to do good things for others [23, 25, 26]. Additionally, as the postoperative period progressed, their enjoyment of the donation improved due to the recipient’s recovery in terms of health.
“Um, and just kind of made me, definitely like a self-esteem boost knowing that I’m able to have the potential to do good things for other people.” [26].

Theme 2: experiencing changes in interpersonal relationships

In the included studies, donors exhibited both closer and estranged relationships with others who were close to them as a result of the donation. On the one hand, they explicitly indicated that they maintained an intimate, good or even better relationship with the recipient. They showed more understanding or interest in each other, had more trust in the relationship, and met or communicated more often; their relationship was thus described as a special and deepened bond [2328]. Simultaneously, donors also noted the strengthening of their relationships with the family to some extent, which subsequently recreated their family and their inner self. Consequently, they viewed their donation as meaningful and rewarding.
“As a result of the illness, we started getting along very well with each other and better and better, till she could open herself to me and tell me everything which had happened to her, in her life. This made her feel better and we have become so honest with each other, that I could tell her my problems too.” [24].
“It creates a different bond between you, I mean, you donating your organ, your liver to your mother is an entirely different thing, it creates a completely different bond I mean.” [23].
On the other hand, donors experienced intense relationships, not only with the recipient but also with their families. For the former, due to feelings of indebtedness and gratitude towards their donors’ sacrifice, the recipient tended to put some distance between himself/herself and the donor. That might influence the authenticity of the communication, especially in the event of a conflict [24, 27]. Regarding the latter, other family members believed that the donor valued the recipient more than the family relationship, and the donor did not receive sufficient support from family members during the donation process, which led to an estranged family relationship [25, 27].
“Everything got worse after the transplantation. He said that I treated him badly since he owed me. However, I didn’t do anything bad to him. He misunderstood me.” [27].
“I knew it was something that bothered her a lot, and she was angry at me about it. [Laughs] It was resentment that moved toward anger later on. It expressed itself, you know, in ways that I had never imagined.” [25].

Theme 3: coping with changes

The considerable impact on the physical and psychological health of donors necessitates appropriate coping strategies to address the effects of the situation. Several studies have reported that many donors strive to adapt, accept, or surrender to this life-changing situation after surgery [20, 21, 24, 28]. Specific examples included striving to control negative emotions, viewing complications as reversible and manageable, removing themselves from information, exhibiting overall confidence, and assigning value to donation [20, 21, 24, 28]. Other donors also mentioned that religion and beliefs are significant in helping them cope with the situation and experience less stress [23].
“I take care of myself very well. I think it [liver donation] was not a problem. I only needed to donate a part of liver. The liver will regenerate, and I will recover after surgery quickly.” [20].
“Thank you God for granting me such thing so that I can do something good for my child. You gave me such a good liver that it also did good to her.” [23].
In addition, most donors noted that support from family, friends, medical staff and the community was integral to the task of coping with the most difficult times following their donation [2325]. These sources provided financial support and emotional support by discussing the donation process, providing disease-related information, offering verbal words of encouragement and praise, helping the donors manage their emotions, praying with the donors and celebrating the donors’ actions, which made the donors feel loved, motivated, relieved and supported.
“Very often and we write to each other. We are in contact at least two or three times a week, if possible. And then I also helped her financially. She’s living from welfare, so I’d like to support her financially. And I am writing really nice letters to her, she is replying and we talk and she encourages me on the phone.” [24].
“If I didn’t understand something, we were going to discuss it and make sure that I did understand what was going on. Dr C was very thorough, he’d get a piece of paper or a napkin, and he would draw me a picture and show me exactly what’s connecting and where it’s going, and he really did put the information out there so that you could ask the questions.” [25].
However, other donors noted that the information and emotional support provided by family and medical staff were less than optimal [22, 23, 27].
“My father and mother are very old, they are in the village. When I had this operation, they weren’t here.” [23].
“Little or no support was provided. You get the feeling that such resources are not prioritised at all… Yes, there is a great deal of fear and thoughts and stuff that you can’t share with others, there’s just no time for it.” [22].

Theme 4: achieving personal growth

Finally, a theme identified in some included studies focused on participants’ descriptions of personal growth. While these studies depicted fairly dire circumstances with regard to physical recovery and the psychological struggles associated with donation, these struggles appeared to be the source of growth and meaning for many donors. Some donors noted that their previous understanding of their personal limitations and abilities was shattered and gained confidence and new perceptions regarding their capabilities [25], which enabled them to accomplish things that previously seemed to be unrealistic or unachievable and to take a step forward for a new path in their lives [26, 28], for instance, starting to perform in front of large audiences, which they had never thought possible before.
“And I can just keep growing in any way that I want to now, and I don’t have to, like, listen to the no person in your head that, like, just like, ‘No, you can’t do that.’ Why not? Why the heck not? You know? Like, you defy the things you think are possible, and then all of a sudden everything becomes possible.” [26].
More importantly, for some donors, as a result of their newly acquired perspectives following donation, they strongly desired to give something back to the society from which they had received so much [25, 26]. One donor stated that “The donation did open our eyes to do something to reach out and to pick your neighbour up, and we knew right after the donation that we were now responsible for putting something back into the kitty” [25]. In addition, the donation experience led donors to change their outlook and perspective on life; they learned to enjoy life now instead of just focusing on furthering their careers or their children’s performance at school [21, 23, 28].
“It made me realize who I am and what I want to be, the value of life. That you take things for granted or you can just let life pass you by and not do anything.” [21].
“It’s provided me a more, um, awareness [… .] and consciousness of my place in society, in my community, my spiritual and physical connection, and my desire to just continue on the same ethos of helping people where possible.” [26].

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 [3638] 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 [4144]. 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.

Limitations

However, some limitations of this study should also be taken into account. Firstly, despite the fact that this search was comprehensive and systematic, some studies may have been missed; in addition, we included only papers published in English, and some non-English papers and grey literature may have been missed. Secondly, we included studies on the lived experience of donors between paediatric liver transplantation and adult liver transplantation, which may have influenced the integration results to some degree.

Conclusion

This meta-synthesis of qualitative studies explored the physical, psychological, and social changes that occur in living liver donors and highlighted the importance of coping strategies and gaining personal growth. This review provides a more comprehensive experience of living donors than is currently in the literature. Promoting the early recovery of living liver donors and improving their quality of life are essential for healthcare providers. Identifying current coping strategies will allow nurses and living liver donors to collectively assess the effectiveness of these strategies and facilitate adaptation when more effective responses are needed. Finally, future studies need rigorous research methods, clear methodological approaches, and consider applying or developing theories to advance academic research and patient-centered interventions for living liver donors.

Acknowledgements

The authors would like to thank all authors of the included original studies, and all participants in this study for their friendly cooperation.

Declarations

Not applicable.
Not applicable.

Competing interests

The authors declare no competing interests.
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Metadaten
Titel
The lived experience of living liver donors: A meta-synthesis of qualitative studies
verfasst von
Li Dong
Zhiru Li
Feicui Lv
Li Zheng
Fangyan Lu
Publikationsdatum
01.12.2024
Verlag
BioMed Central
Erschienen in
BMC Nursing / Ausgabe 1/2024
Elektronische ISSN: 1472-6955
DOI
https://doi.org/10.1186/s12912-024-02611-7