What Survivorship Means to Liver Transplant Recipients—Qualitative Groundwork for A Survivorship Conceptual Model

Abstract

Background & Aims:

Survivorship is a well-established concept in the cancer care continuum with a focus on disease recurrence, quality of life, and minimizing competing risks for mortality; however, this has not been well studied in liver transplantation (LT). We aimed to investigate what survivorship means to LT patients and identify motivations and coping strategies for overcoming challenges after LT.

Approach & Results:

Twenty in-depth home interviews were conducted among adults 3 to 6 months after LT. Interviews were conducted by trained qualitative research experts, coded and analyzed using an inductive approach. A majority of LT recipients (75%) identified themselves as survivors. Integral to the definition of survivorship was overcoming hardship (including experiences on the waitlist) and the unique experience of being given a “second chance” at life. Motivations to survive included: 1) honoring a new chance at life (55%), 2) family (40%), 3) spirituality/faith (30%), and 4) fear of rejection (15%). LT recipients and caregivers identified multiple strategies to cope with post-LT challenges including relying on a large network of community, spiritual, and virtual support. These findings informed a conceptual model of LT survivorship based on socioecological theory, which identified the following variables influencing survivorship: 1) pre-transplant experiences, 2) individual attributes and challenges, 3) interpersonal relationships with caregivers and other social support, 4) community relationships, and, 5) largescale factors including neighborhood and financial issues.

Conclusions:

LT recipients identify themselves as survivors, and post-LT identities were greatly influenced by pre-LT experiences. These perspectives informed an in depth conceptual model of survivorship after transplantation. We identified sources of motivation and coping strategies used in LT recovery that could be targets of survivorship interventions aimed at improving post-LT outcomes.

Introduction

Survivorship is an important concept that has been well described in the cancer literature (1–4), yet has not been investigated among liver transplant recipients. Cancer survivorship delves into a continuum of experiences from diagnosis to beyond treatment including physical functioning, quality of life, and various psychosocial concerns (1). In a similar way, liver transplantation (LT) is a treatment for cirrhosis and liver cancer. Yet, more than a surgery, it is a life-altering experience that poses different physical, emotional, and psychological challenges for recipients and their caregivers (5). Some patients may even view their LT as a new chronic illness, one that involves tradeoffs given the commitment to lifelong medical care (6). These concepts of LT recovery and evolving post-LT identity comprise a larger notion of LT survivorship that has important implications for health behaviors including medication adherence, exercise and healthy eating, and overall engagement in care. Understanding LT survivorship better can inform targeted interventions designed to enhance post-LT recovery and improve outcomes.

While the concept of survivorship has been introduced in LT (7), the full scope of survivorship has not been thoroughly investigated, especially from the patient perspective. The extant literature has focused on some aspects of LT recovery that have important implications for survivorship including physical functioning (8–11), quality of life (12–15), coping (16–18), and psychological symptoms (19–24). Most studies have focused on how these variables relate to outcomes such as medication adherence or graft and patient survival, with limited exploration into other patient-reported experiences (17,25,26). What survivorship means from the patient and caregiver perspective has never been explored for the transplant population.

This study aimed to use in-depth home interviews to better characterize patient and caregiver thoughts, attitudes, and behaviors surrounding challenges experienced after LT and strategies for overcoming these challenges. By characterizing how individuals dealt with these challenges, we hoped to gain insight into what survivorship meant to them and how the experience of receiving a new liver shaped their post-transplant identity. Lastly, we aimed to develop a conceptual model of LT survivorship drawing from these patient and caregiver experiences. This conceptual model intends to inform our approach to supporting individuals in their LT recovery, including adapting interventions from the cancer literature to improve experiences and clinical outcomes for LT recipients (27–30).

Methods

Population

Adults who underwent LT from December 2018 through November 2019 at the University of North Carolina (UNC) were consecutively enrolled either in person in the UNC transplant clinic, or by telephone by a transplant hepatology fellow (S.R.L). Eligible participants included English-speaking, adult (≥18 years of age) LT recipients who were at least 3 to 6 months post-transplant. The 3–6 month period was chosen to: 1) capture a time period during which individuals had overcome the acute physical recovery from surgery, and were beginning to adjust to a new life with their transplant; 2) avoid a recall bias that may occur if interviews were conducted too far after transplant (e.g. 1 year). At the discretion of LT recipients, caregivers were invited to participate in interviews. This provided a unique experience on post-transplant survivorship including collateral information about overcoming challenges after transplant. All participants provided written informed consent and received a $40 gift card for their participation. This study was approved by the UNC Institutional Review Board.

In-Person Interviews

The design and implementation of this study followed the Standards for Reporting Qualitative Research (SRQR) checklist for qualitative investigation (31). In this phenomenological study, interviews were developed so as to uncover the physical, emotional, and psychological challenges experienced after LT, ways of coping with these challenges, and how challenges shaped one’s post-LT identity including what survivorship meant to LT recipients and caregivers. Interviews were intended to generate data to inform a survivorship framework for LT. Interviews were led by trained qualitative research specialists from the University of North Carolina CHAI Core with extensive experience facilitating health-related conversations with patients (including R.T.) and a transplant hepatology fellow (S.R.L). Other research team members including a gastroenterology fellow (H.P.K) and internal medicine resident (L.B.) who also participated in interviews at times so that a goal of 2 interviewers were present for each interview. There was no established clinical relationship between the interviewer and participant, and it was reiterated at the start of the interview that our research team was distinct from the transplant team and conversations would remain confidential. We attempted to conduct each interview in patients’ homes to explore contextual factors that influenced recovery. This included a tour of the home during which participants were invited to show us rooms where they recovered, tools used for recovery, and any other important aspects of their recovery process (e.g., pets, pictures of family). Interviews followed a semi-structured interview guide developed as part of a narrative research paradigm to elicit stories and descriptive details about challenges experienced after LT, and ways of coping with these challenges (Supplemental Figure 1). Interviews were conducted until thematic saturation was reached.

Interview Coding and Data Analysis

Digitally recorded interviews were transcribed by a professional transcription service and imported into Dedoose qualitative software version 8.0 (Los Angeles, CA). Qualitative experts from the UNC CHAI core including R.T. coded ~1,000 pages of interview transcripts compiled across the 20 interviews using standard consensus coding techniques.(32) An inductive analytic approach was used. A codebook was developed in an iterative fashion based on the research questions and notes taken during interviews. The initial codebook was pilot tested by three analysts independently coding two transcripts. Consensus meetings among the analysts led to fine-tuning thematic definitions and revising decision rules in the codebook. There were meetings at the halfway point and at the end of coding during which coding discrepancies were reconciled by discussion and consensus. Narrative descriptions including illustrative quotes were reported for themes/sub-themes that emerged related to each code. In addition to qualitative analyses, patient characteristics were reported using descriptive statistics.

Results

Population: Sociodemographic and Clinical Characteristics

Twenty-five LT recipients were approached and 5 were excluded (2 were not interested in participation; 2 were medically too ill including one individual with severe dyspnea from hepatopulmonary syndrome who could not partake in long discussions; and 1 who lived too far away to coordinate an interview during the 3–6 month period). There were no significant sociodemographic or clinical factors shared among those patients who were excluded and those who participated in the study. In total, twenty in-person interviews were conducted between May 2019 and February 2020; the majority occurred in participants’ homes with a primary caregiver present. Interviews lasted on average 104 minutes (range 56–131 minutes). Patient characteristics are detailed in Table 1. The median age of LT recipients was 61 years (range 28–68), two-thirds (65%) were male, and most (60%) identified as Caucasian. One-third (35%) of patients underwent LT for history of hepatocellular carcinoma (HCC). Regarding post-transplant experiences, the median hospital length of stay was 8 days (range 6–91) and median ICU stay was 4 days (range 1–76 days). About half of participants (45%) had at least 1 re-admission for a post-transplant complication between the time of their transplant and the interview date.

Table 1.

Sociodemographic and Clinical Characteristics of Study Participants (N= 20)

ID*	Age (yr)	Sex (M/F)	Race	Education Level	Self-Identified Faith/Religion+	Interview Location	Caregiver Present (Y/N)	LT Indication^	KT (Y/N)	Native MELD at LT	Waitlist Time (months)	Post-LT Length of Stay (days)	Post-LT ICU (days)	Re-Admissions (#)&	Home Distance to LT Center (miles)
1	63	M	White	HS Grad	Methodist	Home	Y	NAFLD	N	23	1.7	8	3	2	75
2	47	M	White	Some HS	Baptist	Home	Y	Alcohol	N	21	4.1	12	2	0	49
3	50	F	Black	College Grad	Christian, unspecified	Home	N	AIH / PBC / PSC	N	28	22.5	21	12	0	93
4	66	M	White	HS Grad	Baptist	Home	Y	NAFLD / HCC	N	19	8.8	8	4	1	140
5	42	F	Other	Some College	Pentecostal	Home	N	NAFLD	N	32	3.7	7	3	1	129
6	54	M	Other	HS Grad	Methodist	Clinic	Y	Viral / HCC	N	8	6.8	7	3	1	100
7	52	F	Black	Some College	None	Home	Y	AIH / PBC / PSC	Y	21	51.6	17	5	1	84
8	55	M	White	HS Grad	None	Home	Y	Alcohol	N	27	0.76	6	3	2	48
9	68	F	White	Some college	Methodist	UNC temporary residence	Y	Cryptogenic	N	26	42.4	17	6	0	270
10	66	M	White	Grad School	Methodist	Home	N	Viral / HCC	N	28	7.7	6	2	1	21
11	64	M	White	HS Grad	Baptist	Home	N	Viral / HCC	N	14	10.1	6	4	1	18
12	28	M	Black	College Grad	Baptist	Home	N	AIH / PBC / PSC	N	24	42.8	9	5	0	101
13	62	F	Black	HS Grad	Baptist	Clinic	Y	AIH / PBC / PSC	N	36	1.8	21	4	1	85
14	68	M	White	Some College	Baptist	Clinic	N	NAFLD / HCC	N	28	9.8	8	2	0	65
15	65	M	White	HS Grad	None	Home	Y	Viral / NAFLD	N	17	12.1	91	76	0	14
16	58	F	White	College Grad	Baptist	Home	Y	NAFLD	Y	21	7.9	13	4	0	22
17	68	M	White	College Grad	Baptist	Home	Y	NAFLD / HCC	N	40	4.5	7	2	1	76
18	55	F	White	Some college	Christian, unspecified	Home	Y	Viral / HCC	N	28	82.4	7	1	0	25
19	66	M	White	College Grad	Baptist	Home	Y	NAFLD	Y	28	2.4	10	6	0	104
20	60	M	White	Some College	Catholic	Home	Y	NAFLD	N	27	10.1	7	5	1	73

^*To protect the identity of interview participants, IDs were reassigned such that it does not reflect the chronological order of transplants at UNC.

^{^}To protect the identity of interview participants, indications for liver transplantation were listed using broader categories such as viral hepatitis (HBV, HCV) and autoimmune/cholestatic liver diseases (AIH, PBC, PSC).

⁺Based on pre-transplant psychosocial evaluation and electronic medical record documentation.

^&Frequency of readmissions from time of transplant to interview date.

Abbreviations: Autoimmune Hepatitis (AIH); Female (F); Graduate (Grad); Hepatitis C Virus (HCV); Hepatocellular carcinoma (HCC); High school (HS); Kidney transplant (KT); Liver transplantation (LT); Male (M); No (N); Non-alcoholic fatty liver disease (NAFLD); Primary biliary cholangitis (PBC); Primary sclerosing cholangitis (PSC); Yes (Y);

The subsequent results report on: 1) what survivorship meant to LT recipients; 2) motivations and strategies to survive; 3) variables influencing survivorship including pre-LT experiences, social support networks, and largescale issues related to finance and neighborhood level variables; and 4) a conceptual model of transplant survivorship that ties all this information together.

What Does Survivorship Mean to LT Recipients?

Overwhelmingly, LT recipients viewed themselves as survivors (75% participants). Figure 1 summarizes what being a survivor meant to them. LT recipients conceptualized survivorship in terms of the following four factors:

Figure 1.

Representative quotes depicting what survivorship means to liver transplant (LT) recipients from home interviews at 3–6 months after transplantation. Survivorship was described as an ongoing process of overcoming hardship, adapting to new challenges during post-LT recovery, and evolving as an individual with a “second chance” at life. For many, being a survivor meant overcoming a terminal illness like cancer. This concept especially resonated with those transplanted for hepatocellular carcinoma.

• Achievement (i.e., overcoming challenges and having endured something difficult): “I had some challenges, and I overcame them with the help of good doctors and good advocates for transplant. I think that made me become an achiever” (Participant 7). LT recipients also conveyed the mentality of being willing to tackle challenges and being a “fighter”.

• “Second chances” or a new lease on life: Individuals gained a new perspective on life as a result of being given a “second chance”—“You feel like you get a new life…I feel clean and I feel just like I get a second chance…It’s a miracle. And I got one. I got a miracle... It changes [you]” (P8).

• Recovery that is an ongoing and ever-changing process: The liver transplant recovery, while difficult, had motivated individuals to stay healthy and protect their new liver and had generally boosted their resiliency and self-determination—”I think it’s a process to getting healthy. Just like any disease, you go through a process to reach that level of getting healthy. That’s the way I see it” (P3). Interestingly, several individuals described survivorship as an evolving concept that changed over time. They saw themselves as survivors right now, but were not sure what the future had in store—”I don’t ever know when it’s gonna bring me down or if it will bring me down. I’ve pulled through everything I’ve been through so far but it’s nothing like this. I don’t know if one day the medicine isn’t going to work. I just don’t know” (P2).

• Having a terminal illness like cancer: Patients who underwent transplant, especially for HCC, connected the term “survivor” with the experience of having cancer and acknowledged their transplant as a “cure” for their cancer—”I got cancer…that got taken care of… I know it was a necessary thing... It needed to be done. And now I’m just happy” (P18). Even those who did not have HCC, used cancer-related terminology including describing transplant as a cure for a “terminal” illness—”You have a disease and if you do not get a liver, you are going to die…You have a disease that is terminal if something doesn’t intervene here” (P20 Caregiver).

Salient to the definition of survivorship was a sense of one’s identity evolving before and after LT. This shift in identity centered around the unusual experience of being given another human’s body part in a life-saving way. LT recipients mentioned simply feeling different or somehow “clean.” This experience led to physical improvements, as well as a newfound self-confidence and sense of hope. Nearly everyone talked about being more appreciative of life and being grateful to the donor—”You’ve lived two birthdays now. You have your regular birthday and the birthday day that you got your new liver…We want to protect it…so that’s what I do…just it’s meant a whole lot. I’ve gotten another chance” (P14). For many individuals, an important part of their new identity was the chance to do better in the world. For some, this had a spiritual connotation—that it was God’s way of saying ‘do more’ or that their time on earth was not up.

“I think I’m blessed. I think I’m a very special person in what I went through and how it all came out. God has a plan for me…I’m not gonna say well, the Lord’s gonna take care of me. I take my medications...I listen to the doctors but I really seriously am at a point now where I think he has a plan for me. There’s something else now he left for me to do, and it might be interacting with my son or whatever but there’s a reason for it” (P19).

Participants spoke about feeling more altruistic and strived to be more open and adaptable to other people. They talked about trying to reset their own personal and social priorities and not waste the new opportunity they had been given—“I’d say I’m more outgoing. I’m more forgiving to people…You just have to let it go. And I’m finding that that’s working better now…so I have changed that way” (P8).

Despite grappling with the loss of another’s life that was necessary in order for them to live, LT recipients also expressed a sense of ownership over their new liver—“I know that I have somebody else’s liver and kidney in my body. But just from me speaking, I look at those as being me. They’re mine now... That’s my liver now” (P19).

Motivations and Strategies to Survive After Liver Transplantation

LT recipients identified four main motivations to survive including: 1) honoring this new chance at life / respect for the donor, 2) family, 3) spirituality / faith, and 4) fear of rejection (Table 2). The deep connection and respect felt for the donor and the donor’s family was a main motivator to care for one’s new liver. Mixed emotions came with knowing someone had to die in order for them to live; while grateful, LT recipients expressed a lot of sadness, guilt and heavy responsibility, which translated into important motivations to survive.

Table 2.

Key Motivations to Survive after Liver Transplantation—Qualitative Interviews of Liver Transplant Recipients 3–6 Months After Transplant (N=20)

MOTIVATION	%	ILLUSTRATIVE QUOTES
1) Honoring a New Chance at Life / Respect for Donor	55%	“I may not be given another chance and I’m not going to blow it… Somebody else had to die in order for me to get a chance and I try to respect that” (P14) “But it is a lot – to me, it’s like a responsibility. Since someone else gave their life… you know, you’re responsible for making this chance a better chance” (P1) “It’s a gift that someone’s given to you, and they’re losing someone in the process of it, so you’ve got to take care of it. That’s the way I see it… it could have been someone who’s a match and they said no, I’m going to keep these organs in. I don’t care if no one lives or not. It takes special people to do special things. I’m grateful for her family, and whoever she is, gave me the opportunity to live longer” (P7) “You look in the mirror, you see the scars and you think there’s somebody else’s organ and she’s no longer with her family, and I’m here living with mine. So, it’s really touching” (P3)
2) Family	40%	“You’re gonna have times where you’re gonna feel like, ‘Why the hell did I do this?’...it hurts, sometimes, you can’t rest good in bed, can’t turn over...so, it’s this bed, it’s bad, I mean, but you think, Well, why in the hell did I do it?...ah – I said, ‘Well, I got my wife and what I got here, and my kids and the grandkids’… I’d like to see my grandkids get out of school, like to see’em graduate, like to see them go to college. That little six-year-old, if he keeps on playing ball like he does, he’s gonna go somewhere – I’d like to see that” (P4) “My grandkids, and my baby girl getting ready to graduate next year from high school. I got to be there for my babies… it’s being here for my grandkids, and playing, you know, interacting with them and my kids…I can’t be Debbie Downer when I got such a great gift. Every time somebody calls me, they say why are you smiling? …Why not smile? I’m happy. I’m excited, so why not smile?” (P7)
3) Spiritual / Faith	30%	“I think he’s [God’s] giving me this second chance of life that some people don’t get. And I need to take advantage of it… I need to do a better job of not ministering to people but expressing my faith to more people more openly than I did in the past” (P17) “I guess my stronger faith is making me empowered. ’Cause before, I wouldn’t have anything to say about that. But now, I think my faith has given me so much power and strength to move forward. I think that’s what my faith... You have to be strong to go through this and not give up” (P3) “I mean I’m not a church-goer or whatever…but I am spiritual. And I believe there is some kind of higher power, keeping us alive…he had hundreds and hundreds of people praying for me. And I said, ‘Well y’all keep praying.’ I say, ‘Because it seems to be working’” (P15) “I was serving the Lord before this; I was serving him. But now after the transplant, it’s like he’s given me more power to overcome situations like this. So, my power comes from him…he gave me strength and everything to go through this, and I’m just – you know, I’m grateful that he gave the doctors that I saw, and the surgeons, the knowledge and understanding to do their jobs” (P5)
4) Fear of Rejection / Liver Failing Again	15%	“What motivates me is to make sure I don’t have to go through it again, or that my liver doesn’t get bad again. I guess that really motivates me because I know I waited such a long time. I know that’s definitely my number one motivation.” (P12) “But I don’t want to go without it, because I know I could reject my liver. And why go through what all’s been done from the surgery on, to just throw it all away? That would be stupid. I mean, I shouldn’t have had the transplant if I was gonna be like that. I didn’t deserve it if I’m not gonna try to do what I need to do to stay healthy and live” (P18)

A key component of LT survivorship was finding ways to cope with significant emotional distress, including feelings of depression and anxiety, at some point during the recovery process. Overcoming these emotional and psychological challenges was an important component to their recovery and plan to return to a healthier, more productive life. Regarding strategies for overcoming challenges, participants expressed the importance of the following key strategies (Table 3):

Table 3.

Strategies for Surviving After Transplantation—Qualitative Interviews of Liver Transplant Recipients 3–6 Months After Transplant (N=20)

STRATEGY	ILLUSTRATIVE QUOTES
1) Maintain Hope / Positivity	“I feel so much better about life overall because before, with liver disease, your mind is not...there’s always depression and, what can I say, negative thoughts. But now, I’m more positive, the outcome is more positive. Life is what you make it. That’s the way I see it now, so” (P3) “I feel really positive about that, because I think that if I was blessed enough to be able to get a liver that some other person gave to me, I feel like I’m just very, very grateful. And I feel that it is gonna be a real good one for me. I have full intentions of living to be 90, so, I don’t think any other way, and I don’t choose to” (P9) “And that’s what we call it now, this liver is my new life, I have a new life, second chance of life, you know, that I can just, I can continue on” (P5)
2) Focus on the Physical Recovery—The Mind Will Follow	“It just really affected me physically, mentally, emotionally, every kind of feeling you got. It was tough and then I started trying to get my strength back and walking some more and it was, I knew I was not anywhere near what I was prior to the surgery…[but it was progress]” (P17) “But, you know, the first 90 days, it’s pretty much just getting your body built back up just enough to do the basics, you know. Like, making sure you can get to your showers, and to the little everyday things, you know, fixing some of your own meals and stuff” (P11) “I have gained a lot more confidence from it, just knowing there’s a big difference physically in things now. So, I can do more and feel differently… I feel better and probably look a lot better, so there’s getting confidence in there for me…there are some things I’ve, I guess, even gained confidence in overcoming fears and things like that, too. It’s been a big confidence booster for me. I look at things a lot differently now” (P12) “I feel really better than I thought I was gonna feel. ’Cause I’ve seen people that have surgery, transplant. They look so fragile and really ill. But I guess I feel better than I look, I guess, I’d say. But then, I went to the store and the lady that works at the pharmacist in the pharmacy, she looked at me. She was like, oh my god, you look so much better ’cause before, I didn’t think you were gonna make it” (P3)
3) Rely on Family	“So, then I’d lay here and it’d be like she’d come home from work. That was one of the priorities when she came back. She’d stayed up there for so long, all of her vacation time and everything had gone out and financially --– it was really tough because you know all of her vacation time, and all that stuff had run out. So we didn’t have any income coming in. If it hadn’t have been for her mother and father helping us out, that could have been a really bad situation, being able to meet the mortgage and that kinda thing” (P19) “I was lucky enough; my sister flew out here…she stayed at the house with us for the first month. And then she stayed at my parents’ house, which is just down the road for the second month. And she was actually making up – she’d help me get in and out of the shower. Because that’s difficult, you know, that when you take a shower. Then my mom and dad bought me a shower seat to sit down in it. ‘Cause it’s rough, you know? You can only do so much. And your body just hasn’t adjusted to it, and you don’t have a lot of energy” (P18)
4) Use Support Networks	“It’s tough. But like I say it’s good, if you ain’t got good support—you’re not going to get through it. You’ve got to have a positive support system” (P6) “Praying, writing, talking to my friends. I have some really good friends who I can trust. Talking to them, talking to my mom” (P16) “I have a friend and she’s out on the road. She travels a lot with her job. I Facetime with her…She calls me a lot…Even though the time is different, like the middle of the night… she keeps me motivated, as well. I talk to her about it. She’ll say no, don’t even think about that. We’ll just talk about it” (P3) “I’ve got friends that come by regularly. They got a set time to come near about. And the biggest thing is I found out how many friends I do have. That’s been a blessing in disguise…we all must rely on each other around here, because like I say, you found that driving down here. There ain’t a whole lot down here” (P1) I got a lot of my musician friends…they got me on Facebook. There’s a man “We miss you, hurry up and get well and get back here.” (P15)
5) Embrace Faith / Spirituality	“My church was praying for me, my family was praying for me. We were praying together and I got a peace about it again” (P17) “Well, one thing that sticks out to me is all of our church people, how much they have supported us for so many years, bringing us stuff, bringing us food…And our Sunday school class gave us how much...I mean more than once they’ve given us checks like $500 checks. I remember one time it was $1,000 check. I mean it’s so wonderful. I mean as time is passing by, they just don’t give up on you. Stick with you” (P16) “My church family that came, they cooked, they, you know, if I needed my home cleaned, they would clean it. But I didn’t ask them to do that, because, you know, as soon as I would wake up, my mom would come over and get me, and I’d go over there and stay” (P5)
6) Trust in Medical Care Team	“I have medical professionals to tell me this is what I’ve got to do to have a better life. And so, I’ll do it. And so, they told me you got to have a liver. Okay. Let’s do it. Let’s get it over with” (P15) “I tell myself, ‘You went to the right hospital’… I don’t know how long some of those doctors have been up there, this, that, and the other, you know, I don’t do background checks. But, you know, when they talk to you, they break it down to tell you…you listen to’em and you’re, like, ‘Okay, sounds like they know what they’re talking about.’ So, you know, I’m pretty sure they can get you fixed in a hurry” (P5)

• Maintaining hope/positivity: It was important to try to maintain a positive outlook during the post-transplant recovery. Positivity helped individuals to handle adversity.

• Focusing on the physical recovery: By recognizing that their body was getting stronger each day and that they were not as “sick” as before surgery, LT recipients were able to gain confidence and assurance that they would emotionally recover after LT. Although the recovery period was slow and with plenty of setbacks, experiencing incremental improvements in physical functioning and appearance brought about happiness and hope for a successful recovery. Feeling better was also a motivator to continue to adhere to other transplant recovery guidelines (i.e., diet, medication adherence, engaging in physical activity).

• Relying on family and other support networks: All LT recipients mentioned the importance of relying on family and their network of friends, neighbors, and other community members. These support structures were vital to not only the physical recovery (i.e., getting around the house, attending clinic appointments), but also bolstering morale and fostering positive energy.

• Embracing faith / spirituality: Overall, 60% of participants mentioned the positive role that faith or spirituality played in their recovery. Some felt their faith had led them to find a sense of peace or connection with the situation and with loved ones. Others commented on the healing power of personal prayer and prayers they had received from others. Several participants shared stories of how their religious community helped to spiritually and financially uplift them with cards, letters, phone-calls, and monetary donations.

• Trusting in the medical care team: The health care team played a vital role in maintaining a positive outlook during recovery. Participants indicated that their trust in their medical care team boosted morale and positivity. The professionalism and overall support of the healthcare team made a difference in how LT recipients and caregivers felt especially when it came to confronting post-transplant challenges.

Factors Influencing Liver Transplantation Survivorship

LT survivorship was described as an ongoing process of overcoming hardship, adapting to new challenges during post-LT recovery, and evolving as an individual with a “second chance” at life. Various factors were identified as contributing to LT survivorship that were categorized into larger domains of influence including pre-LT experiences, interpersonal relationship including support networks, largescale issues including financial and neighborhood level variables.

Experiences Leading Up to Transplantation

Already mentioned as a key component of survivorship was the concept of overcoming adversity. The varying experiences leading up to LT greatly shaped perceptions of post-transplant identity and recovery. For many participants, especially those with decompensated cirrhosis, existing at the brink of life and death shaped their identity as survivors—“Absolutely [I am a survivor]. After what I went through, are you kidding? Oh, my gosh, yeah. I was sick as a dog before that. I didn’t realize how much I was sick, really. I was coming and going every week” (P20). In addition to hepatic decompensations, other waitlist experiences that shaped their view of their recovery and what they overcame including functional impairment, time spent on the waitlist, and being called in from home (vs. inpatient) for LT.

Social Support Networks: In-Person, Spiritual, and Virtual

The importance of a support network during the recovery period, especially the first 3–6 months after transplantation, could not be overstated. Most said it would have been impossible to deal with and overcome challenges post-transplant without the support from others. Support was derived from various sources including: 1) primary caregivers / families / friends, 2) local communities, 3) religious communities, and 4) virtual communities (Table 3; Section 3 & 4). LT recipients found comfort and support from pets at home—a majority of participants had dogs or cats at home with them and expressed how much joy and comfort they received from being with them after LT. Other sources of support aside from family/friends are described in more detail below including local/neighborhood, spiritual, and virtual sources of support.

The outpouring of help received from the local community was surprising and overwhelming to patients and caregivers. They received numerous phone calls and texts from community members checking in on them or asking what they needed. Community groups (e.g., firemen, church congregation) organized fundraisers to raise money to help participants with their added medical costs. At least 20% of participants mentioned significant funds being raised on their behalf to help support them financially after LT (Participants 1, 4, 16, 20).

“There’s a place down here, a consignment shop… I went in there after my surgery and they had put me in their prayer jug. When I walked in there, the lady started to cry…I didn’t realize how many people, half this neighborhood knows about me” (P20).

“We had a fundraiser…we had a pancake and sausage supper, one night, and we raised about $3,500.00 that night, and [then] they put it online…and people kept donating, I think we ended up, like, $4,500.00. You can use that money for light bills, house payments, whatever” (P4).

For many, going through the experience of transplantation resulted in a renewed sense of spirituality or a deeper connection to their religious faith. Faith, religion, and spirituality helped LT recipients and caregivers cope with challenges after LT and contributed in various ways to LT survivorship (Tables 2 & 3):

• Help understand the process of LT (including rationalizing waitlist experiences and grappling with the death of the donor): Most felt God or another higher power had played an active role in their being placed on the liver transplant waiting list and had provided safety and security during the surgery and the recovery period. The fact that they spent as long as they did on the liver transplant waiting list and received their new liver when they did, was all part of “His plan.” They felt blessed and at peace knowing this experience was all part of “His plan.”

• Clarify post-LT identity and “purpose”: Most expressed they had looked more deeply for meaning in their lives since receiving a new liver and used spirituality and faith as a way to understand their purpose in life.

• Provide hope to help support physical and emotional recovery: Individuals leaned on their faith after surgery and during the recovery process. They derived strength from knowing that others cared about them through phone calls, texts, and offers to cook food. As a result, LT recipients felt more empowered to stay positive and motivated to push themselves forward towards a healthier life.

• Connect with others including members of their community: Some described a “church family” that was always supporting them during the LT recovery. Even for some who did not attend religious services, feeling connected to others in their community provided healing in a powerful way.

“I mean I’m not a church-goer or whatever…but I am spiritual. And I believe there is some kind of higher power, keeping us alive…we had hundreds and hundreds of people praying for me. And I said, ‘Well y’all keep praying.’ I say, ‘Because it seems to be working’” (P15).

Another source of support included online or virtual communities. Facebook, for example, was used to update friends/family, raise awareness about transplant-related issues, and collect donations. Social media allowed for easy dissemination of this information to various individuals from different networks. Indeed, most felt compelled to let employers, extended family, and neighbors/friends know about how they were recovering after LT.

They started the Facebook page – It was our daughter who just would get on there and talk about what was going on with him…she kept everybody updated through Facebook…One day they had an auction too…People donated items to be sold. Some nice stuff…Somebody donated a generator (P1 Caregiver).

Largescale Issues

Beyond the individual, community, and spiritual aspects of LT survivorship, there were other issues at hand including dealing with financial hardships, issues with healthcare access (i.e., medications, clinic visits, transportation), and neighborhood-level disparities. This was further appreciated by traveling to individuals’ homes and experiencing the remoteness of some locations. Patients lived on average 76 miles (range 14–270) from the transplant center (Table 1), which was often mentioned by patients in our discussions pertaining to travel, access to medical facilities, and related financial struggles. LT recipients were worried about making ends meet and the financial burden of covering medical costs and other bills with no income being generated.

“It gets tough some months… Mostly you’re worried about are you gonna have the money to get your medicine. We make it by. There might be a month or so that gets tough. We ain’t the ones that get out and go shopping just for no reason, or go here, or go there. We just go do what we gotta do” (P2).

A Conceptual Model of LT Survivorship

After a final compilation of the data, a conceptual model of LT survivorship was developed based on the socioecological model (33), which was chosen given the numerous variables found to influence survivorship as discussed above (Figure 2). Socioecological theory best captured the interactions between individual and environmental domains of influence. The proposed survivorship model was informed by patient/caregiver perspectives as reported here, anthropologic assessments of individuals’ homes, and variables suspected to be of importance. Figure 2 elucidates several important dimensions shaping LT survivorship: 1) pre-transplant experiences: including history of decompensations, pre-LT functional status, waitlist time and experiences; 2) individual characteristics: including physical, emotional and psychological attributes and experiences after LT; 3) interpersonal relationships: including relationships with family, friends, and other social networks, as well as challenges grappling with social isolation; 4) community relationships: including those with the local, spiritual, and medical communities; and 5) largescale access issues: including financial stressors and neighborhood-level disparities.

Figure 2.

This conceptual model depicts the different layers of influence contributing to LT survivorship—defined by participants as an ongoing process of overcoming hardship, adapting to new challenges during the post-LT recovery, and evolving as an individual with a “second chance” at life. Adapted from the socioecological model, there are individual, interpersonal, community, and largescale variables influencing LT survivorship. Among individual experiences, pre-transplant experiences were found to have a very important influence in shaping how LT recipients saw their recovery and life after LT.

DISCUSSION

LT recipients view themselves as survivors as a result of the challenges they endured, including experiences leading up to and after LT. This was more pronounced in patients with decompensated cirrhosis, who suffered severe morbidity prior to LT. In comparison, individuals transplanted for HCC often felt well prior to LT, but identified themselves as survivors of cancer. Some LT recipients described an evolving post-LT identity sparked by the salient experience of receiving another individual’s liver and being given a “second chance” at life. Our findings highlight the complex network of social support structures that are important to LT survivorship, which surpass routine caregiver and family support and include community, spiritual, and virtual support structures. These findings taken together informed a conceptual model of LT survivorship, depicting the various domains of influence shaping LT survivorship, identity, and recovery. Ultimately, LT survivorship comprises more than just graft or patient survival; it includes an evolving recovery process greatly shaped by experiences before and after LT.

The concept of LT survivorship recently has been introduced as an extension from the cancer survivorship literature (7). However, no studies have specifically explored what survivorship means to LT recipients and caregivers. Given transplant recipients are an inherently different population than those diagnosed with cancer (including those with HCC), it is important to conceptualize survivorship as it pertains to this unique population. Essential to understanding LT survivorship is: 1) identifying the challenges (physical, emotional, and psychological) experienced by LT recipients and caregivers; 2) understanding how individuals cope with these challenges; 3) and connecting how these challenges/coping strategies influence post-LT identity and recovery. Elsewhere, we elaborated on the specific challenges experienced by LT recipients and caregivers, investigating domains beyond quality of life or psychological symptoms (5). Here, we focused on LT survivorship from the patient/caregiver perspective, motivations to survive, and coping strategies for overcoming challenges surrounding LT. This more in-depth understanding of LT survivorship can help inform how to better support LT recipients/caregivers and ideally improve outcomes as has been attempted among cancer populations.

In the cancer literature, defining when survivorship begins (i.e. at diagnosis, start of treatment) remains controversial (1–4). Similarly, if LT is considered a treatment for chronic liver disease or cancer, then survivorship may begin with the experience of being placed on the waitlist or undergoing surgery itself. The emphasis on graft and patient survival as metrics of quality in LT suggests that LT survivorship is most influenced by surgery and the recovery thereafter. However, we found that from the patient/caregiver perspective, survivorship did not begin with LT surgery and was very much shaped by pre-LT experiences. Inherent to the definition of survivorship was overcoming hardship—for many this included managing cirrhosis complications and other waitlist experiences, in addition to recovering from challenges after surgery. This finding that pre-LT experiences shape LT survivorship and post-LT identity, has important consequences for LT outcomes including how we define a “successful” LT, as well as how we engage LT recipients and motivate them to stay healthy.

A large focus of this study was investigating how individuals cope with or overcome challenges. The extant LT literature has investigated coping and resilience as measured by survey instruments (17,18). While objectively measured coping styles are important, this study used in-depth interviews to better understand unanticipated challenges faced after LT and intervenable factors that influenced coping and resilience. We aimed to understand the complex challenges experienced after LT and specific cognitive, behavioral and social strategies used to overcome these challenges. An important finding from this study was that LT recipients draw on various types of support networks to help cope with the challenges surrounding LT. Atypical sources of support included community, spiritual, and virtual sources of support, which were vital to LT recovery. This has important implications for what we consider to be “good social support” in the pre-LT evaluation. Beyond family and friends are other sources of support and connectedness that may play an important role in LT recovery. Identifying these sources prior to LT and encouraging recipients to utilize this support may be important in facilitating better coping.

Understanding motivations for surviving and strategies for coping can better inform socio-behavioral interventions at the patient level. More specifically, survivorship interventions can target several aspects of LT recovery including physical symptoms, psychosocial experiences, and health promotion, as has been done in cancer populations (27,28,30). Examples of cancer survivorship interventions include diet/exercise regimens, mindfulness interventions, and proactive management of symptoms like poor appetite or fatigue with medications. An important intervention that could be adapted from the cancer literature is an individualized survivorship plan that includes: 1) medical information (e.g., details of a LT recipient’s diagnosis, surgery, complications, medication list, care team and expected consequences of surgery/medication side effects), 2) health maintenance plan (e.g., primary care follow-up, cancer prevention screening), 3) employment resources (e.g., short term financial resources while recovering and plan for return to work), 4) insurance information, 5) psychosocial support (e.g., resources for community, religious, virtual and transplant-specific support networks), and 6) diet/exercise plan (e.g., in home or virtual programs) (29). Harnessing technology, including developing a virtual survivorship plan, and making educational and support resources readily available through smartphones or web-based platforms, could be an important way to promote survivorship after LT (34). Survivorship care plans also invoke the question of interventions at the provider or clinic level. Cancer survivorship has begun to explore issues of roles and responsibilities of different clinician types (35), some within a framework of a multi-team system (36,37). Before we can assess whether interventions tested in other disease sites may be relevant and adaptable to the LT survivorship milieu, better data on physician attitudes, knowledge, and practice related to these important transitions in care are needed.

Limitations of this qualitative study included its small sample size and single center design, so findings may not be generalizable to all LT recipients. This is a phenomenological study including only English-speaking patients with the potential for variable regional results. A sampling strategy was not used; therefore, the findings may not represent survivorship experiences of all LT recipients. That being said, our population was fairly diverse in terms of age, sex, race, and indication for LT considering baseline disparities in LT. As with any qualitative study, biases can occur including acquiescence and selection biases. To combat these biases, we used rigorous qualitative methods including bringing in external qualitative researcher experts separate from the primary research team to facilitate interviews. We used open-ended questions and techniques to facilitate patient-driven conversations. Conducting interviews face to face, especially in the patient’s home, helped us reach more patients who were struggling with their recovery. This allowed for investigation of more diverse survivorship experiences and helped avoid a selection bias. Home interviews not only provided an anthropological assessment of the environments in which individuals recovered, but also helped facilitate open and honest conversations with LT recipients and caregivers.

In conclusion, LT survivorship encompasses more than just graft or patient survival and is an important concept that should inform LT outcomes. By offering a conceptual model of LT survivorship that looks at multiple dimensions influencing LT recovery, we hope to offer a more holistic understanding of survivorship and uncover areas to target in terms of interventions to improve LT outcomes.

Supplementary Material

Supplementary FIgure

Supplemental Figure 1. Interview guide used for semi-structured interviews of 20 LT recipients and their caregivers. Interviews took place primarily in patients’ homes and were conducted by skilled qualitative research experts.

Abbreviations:

(HCC)

Hepatocellular carcinoma

(LT)

Liver transplantation

(P)

Participant