Caregiver Perspectives on Supporting Kidney Transplant Recipients Through Graft Loss

Abstract

Background

Caregivers of patients with chronic diseases are unpaid providers, whose contributions to healthcare and patient outcomes are well recognized. We sought to obtain the perspectives of those who have supported a kidney transplant recipient with a failing or failed graft.

Methods

This qualitative study adopted an interpretive-descriptive methodology. Data collection entailed semistructured interviews that were analyzed thematically.

Results

Twenty-three caregivers (spouses = 11, parents = 10, and siblings = 2) reported that graft loss did not introduce new roles or responsibilities. However, the caregiver burden intensified because of the following: supporting recipients’ wellbeing (emotional support and attention to social needs); adapting to the new reality of graft loss (dietary management, home dialysis support, logistical coordination for medical appointments, and treatments); navigation of care (information tracking and communication and advocacy); and managing multiple roles and responsibilities (increased household and parental load and balancing employment and caregiving). Care gaps included more focus on the graft instead of the person (clinical prioritization of the graft and lack of attention to mental health and emotional aspects of graft loss); communication shortcomings; and inclusion of caregivers in patient care (not recognizing the value of caregiver input and lack of role definition). Recognition of emotional labor and support; educational resources tailored to the graft loss phase; training and tools to fulfill the role of caregivers; peer support; and social work were the desired resources.

Conclusion

Caregivers of kidney transplant recipients experience heightened burden with graft loss and reported feeling undervalued. We recommend strategies to better integrate, support, and educate these caregivers, as it may enhance both their well-being and the outcomes of recipients who experience graft loss.

Graphical abstract

The medical and economic contributions of unpaid caregivers, or ‘lay caregivers,’ in healthcare are widely recognized.1, 2, 3 They are family members or friends, often not professionally trained, who provide care and support to a patient with a chronic or acute illness or an impairment. A multidimensional and evolving role, a caregiver’s tasks and activities fall within the domains of self-care, mobility, emotional and social support, care provision, and care coordination.⁴ Intensification in the caregiving role can occur during transitions of care, health deterioration, and changes in therapies. The impact of this on the caregiver and aspects of their role that change or evolve are not well understood.

A caregiver of a kidney transplant recipient with a failing or failed graft may particularly exemplify this intensification of roles and responsibilities. Caregivers play a crucial role in patient adjustment and adherence to dialysis and transplantation.^5,6 The burden of dialysis on patients and caregivers has been extensively reported using different quantitative measures of well-being, and in some explorative qualitative studies.^5,7, 8, 9, 10, 11, 12, 13, 14, 15, 16 Kidney transplantation can alleviate some of this burden and improve the quality of life of both recipients and their caregivers.^7,12,17 However, 20% of recipients are estimated to lose their graft within 5 years of transplantation, and > 50% within 10 years.^18,19 Kidney transplant recipients who experience graft loss are impacted by a range of tangible and experiential losses that go beyond the loss of the transplant itself.²⁰ Many of these patients are not re-transplant candidates and will be dialysis dependent.²¹ Furthermore, the outcomes and quality of life of recipients postgraft loss are worse than patients with native kidney failure, and mortality is disproportionately higher in the first year following graft loss.22, 23, 24, 25, 26, 27, 28, 29 This phase of health deterioration and the transition from a functioning graft to dialysis can contribute to an intensification of caregiving responsibilities and roles. However, there is a dearth of data reporting on the impact of a failing or failed transplant on caregivers. The perspective of caregivers with native kidney failure in the studies cited above may not be completely representative of the perspectives of the caregivers of recipients who have lost their graft.

We developed a multiphase study to investigate the perspectives of multiple stakeholders on the experience of kidney transplant loss. In our previous work, recipients reported several care deficiencies and unmet healthcare needs.³⁰ The importance of social support in helping these individuals cope with graft loss was summarized in a systematic review.³¹ Perspectives of caregivers can add to this body of work and help identify opportunities for improvement in care delivery. Thus, we now focus on a comprehensive examination of the experiences of caregivers supporting recipients through the challenging process of graft loss. Our specific questions were: (i) What specific roles do caregivers play during graft loss and its aftermath?; (ii) What do caregivers perceive as critical shortcomings in care provision?; and (iii) What resources could assist caregivers in offering better support?

Methods

This study was approved by the research ethics board of the McGill University Health Centre in Montreal, Canada (MP-37-2022-8290). We followed the Consolidated Criteria for Reporting Qualitative Research checklist to ensure rigor in our reporting (Supplement 1).³²

Design

We adopted an interpretive-descriptive approach, which is designed for the examination of “problems in practice.”³³ Interpretive description is a rigorous methodology suitable for researching clinical problems and collecting experiential knowledge with the goal of providing insight for the improvement of care.³⁴ In this case, the impetus of our study was to address care deficiencies and analyze the subjective experiences of individuals who have first-hand encounters with graft loss.

Research Participants and Sampling

Eligible participants were adult Canadian caregivers (>18 years of age). Although definitions of caregiver are not consistent in the literature,¹² we defined a caregiver as someone who had supported a recipient during the loss of their graft. There was no restriction on the length of time between the interview and the patient’s experience of graft loss. The caregiver could be a partner/spouse, parent, other family member, or friend. No language restriction was placed; if needed, we offered certified translators to provide live translation during the interview.

All collaborating sites used a purposive recruitment approach whereby they intentionally selected participants and shared information about our study and a flyer with them.^35,36 In addition, we used a snowball approach,^35,36 whereby participants from the patient cohort in our study shared the study flyer with their caregivers.^20,30 Those interested then contacted the research team at the McGill University Health Center and were screened for eligibility. Consent was obtained by a research assistant (KG). Recruitment flyers were also posted on the social media sites of our team members and participating organizations; however, all eligible participants were referred from participating sites or recruited through the snowballing approach.

Data Collection

We collected data using semistructured interviews in which the questions posed were open-ended and encouraged engaged conversation. The interview guide was developed using data from our previous work with recipients who had experienced graft loss and with the input of our patient partner (MF, caregiver, and living kidney donor). It was piloted with 5 participants, requiring minor revisions (Supplement 2). The interviews were conducted by an experienced qualitative researcher (AS, female, >10 years of experience). The participants had no previous relationship with the interviewer. Participants were aware of the interviewer’s credentials, and it was explained that the purpose of the study and the interviewer’s interest was to understand their experience. The researcher (AS) took notes and wrote brief memos during and following the interviews to foster reflexivity, identify potential follow-up questions, and record key points. Interviews lasted from 33 to 115 minutes (average 77 minutes). Interviews were held over the telephone or Zoom meetings (Zoom video communications), recorded, and transcribed. Transcripts were verified by a member of the study team (AS), but member checking was not pursued. Participants were compensated with a $50 gift certificate in appreciation of their time and contribution upon completion of their interview. Interviews were conducted until inductive thematic saturation was achieved, i.e., when new codes were not emerging, and we had sufficient data to support the themes.³⁷

Data Analysis

We conducted an inductive thematic analysis through the following stages³⁸: (i) Data familiarization: Two researchers (AS, AL) independently reviewed all transcripts to identify preliminary themes relevant to caregiver experiences. (ii) Initial coding framework: The researcher (AS) created tabular summaries highlighting key points from each interview. These summaries informed the development of a preliminary codebook with theme definitions. (iii) Systematic coding: Interviews were uploaded to Quirkos software for analysis. Two researchers (AS with AL or MG-B) independently coded each transcript. (iv) Iterative refinement: Themes and subthemes were dynamically updated throughout coding to better reflect emerging patterns. Coding disagreements were resolved through consensus discussions and with the participation of another team member (SS).

Results

Sample

Of the 30 eligible caregivers who contacted us, 23 participated in the study. Participants were spouses (n = 11), parents (n = 10), and siblings (n = 2), from 6 provinces across Canada, and 57% identified as women and 83% as White. Twenty-one interviews were conducted in English, 1 in French, and 1 in Cantonese with a certified translator (Table 1). Six participants cared for someone who subsequently received another transplant, 2 were caring for someone with a failing graft, and the remaining cared for someone on dialysis.

Table 1.

Sociodemographic characteristics of participants

Age (mean yrs and range)	55 (31–71)
Women, n (%)	13 (56.5)
Race or ethnicity, n (%)
White	19 (82.7)
Asian	3 (13.0)
Indigenous	1 (4.3)
Province of residence, n (%)
Alberta	1 (4.3)
British Columbia	2 (8.7)
Manitoba	3 (13.0)
New Brunswick	4 (17.4)
Ontario	8 (34.8)
Quebec	5 (21.8)
Level of education, n (%)
High School	5 (21.8)
University/college degree	17 (73.9)
Not reported	1 (4.3)
Employment status, n (%)
Full-time	11 (47.9)
Part-time	1 (4.3)
Unemployed	3 (13)
Retired/Semiretired	7 (30.5)
Not reported	1 (4.3)
Relationship to patient, n (%)
Partner/Spouse	11 (47.9)
Parent	10 (43.5)
Sibling	2 (8.6)
Language, n (%)
English	21 (91.4)
French	1 (4.3)
Cantonese	1 (4.3)

The themes generated surrounding each research question are discussed below and outlined in Figure 1. Illustrative quotes are presented in Table 2, Table 3, Table 4.

Figure 1.

An illustration of the caregiver roles when supporting a kidney transplant recipient with a failing or a failed graft, what they perceive as care gaps, and the resources that could assist their caregiving role.

Table 2.

Illustrative quotes for the themes and subthemes that emerged describing participants’ role as a caregiver to a kidney transplant recipient with a failing or a failed graft

Theme	Subtheme	Representative Quotes
Supporting Patient’s Wellbeing	Emotional Support	It’s not just about going to those appointments and sitting there and being by his side, but . . . checking in with him after . . . to say, like, hey . . . I know physically you’re struggling, but how are you doing mentally? Are you okay? (28-11).
		Like, when she gets home from dialysis especially if she’s had a really, really bad session. She’s like, you know, just be close. Like, even if I’m playing video games or watching, you know, tv or whatever, you know, just be close. Just be here. Just be present. (11-01)
		It was holding his hands. It was a lot of holding his hand . . . You do a lot of listening, and you have to sit with them, even though everything is quiet, as long as they know that you’re nearby and that you’re supportive. (28-14)
		So part of it was talking to my wife about her previous experience with things like dialysis and when she first got ill and was losing her native kidneys. We talked about that, and I pick up tidbits from here and there. When she talks about things that were hard, I remember and say, oh, you found that part of it hard, right? (28-18)
		There were days . . . I would call just to make sure he’s okay . . . And if he didn’t answer . . . you get that pit in your stomach feeling. So I would, on my lunch hour, make a journey home and see . . .I mean, did he get depressed? Yes, he did . . . It’s like, do you want to listen to your favorite music? Do you want me to put on some Neil Diamond? No answer. So then you would put on good old Neil Diamond. And then I’d say to him, well, I made you something to eat and I got to get back to work. (28-14)
		I held back my tears, I didn’t cry in front of her, I really held it back but deep down, I let off steam this way… but in front of her I didn’t cry, I let her know that it is possible to have another kidney transplant. If I had started crying, started to be negative, I would have pushed her in the direction of, you know, what is the point in living then? (99-02)
	Attention to Social Needs	All his friends are married with children, and so really all he has is us. He talks a lot to my husband. I’m remarried . . . so he and [husband] talk a lot, so that’s a good social thing for him . . . It’s a big worry that he has no contacts with people his own age . . . He said to me, I just don’t have any energy now. And he doesn’t. He doesn’t have any energy. He’s tired all the time . . . So social isolation is a big factor, and . . . I feel for him. It’s not a good way to live. (28-15)
		His friends have all progressed, marrying, kids, things like that. All of this has affected his ability to . . . meet anyone, have a group of friends . . . so that means that he’s here with us all the time and we become his social and emotional support as best we can, which is tough. (50-02)
		This weekend we went out with the family, I kept her busy, I didn’t let her do nothing. We didn’t stay in, we went out, the weather is becoming nicer now, so I take advantage of it, I say OK let’s go outside, we’ll go by the water, we’re going to have picnics. (99-02)
Adapting to the new reality of graft loss	Dietary management	The one thing is my son needs to have a very strict diet. So that led to additional planning and work . . . I was very strict about the diet. (99-03)
		I’m educated enough about diet and the roles of potassium and phosphate in the system and things, so I know what happens and make myself aware (50-02)
		A big part of his care was getting a certain amount of fluid, right, to keep the kidneys working. You know, you do that, you know, like, if he needs two liters of water a day, then you, as a parent, make sure that he gets two liters of water a day. When he was on dialysis and he was fluid restricted and he could only have a liter, you make sure he only gets a liter. (34-02)
	Home dialysis support	When we started doing home dialysis overnight, which was like, 12 hours overnight every night, seven nights a week, I would be the one to prepare the machine and all the bags of fluid that would have to be used. They’re big, heavy boxes that would get delivered every month by Baxter, and I would be the one that would take them, store them, and carry them up and down the stairs and fix the machine up every night so that my wife could be hooked up overnight and that stuff. (99-04)
		I felt like I’m responsible for keeping him alive, and that was really scary. Although nobody said you’re responsible for keeping him alive. That is really what’s going on. (28-12)
		Knowing what I know about . . . peritoneal dialysis, I don’t know how somebody could do it on their own. (28-18)
	Logistical coordination for medical appointments and treatments	I could say my job is like bus driver because I drive her three times a week to the hospital, then I come home, then I go back, pick her up, and then I come home. So I do that three times a week because it’s hard enough and long enough. I don’t want for her to take . . . other methods of transportation. I can be there in, like, 25 minutes, half an hour. So that, I think, eases the burden for her because it’s late enough. She’s done at 10:00 at night, so it’s a long day. (28-13)
		So the transportation to and from clinic visits and or, you know, other visits is a big thing, especially when you’re tired and you’re not focused . . .But, you know, we got to kind of plan the day and go to [place] for all the appointments. That’s a big one. Taking care of, like, taking the anxiety away from how my, you know, how her thinking, how will I get to all these appointments? (28-18)
		The driving up and down to [location] from [location]. But did I ever complain? No, I don’t think he could say that I ever complain. We have to do what we have to do to support one another (28-14)
Navigation of care	Information tracking and communication	I went with him to every appointment as being his eyes and ears, because when you’re ill, you don’t always hear and recite your history well. So I always wanted to be there because I knew the difference it would make in his care. (50-02)
		It’s important that you ask questions and that you go to all the appointments . . . if you got the flexibility, go to all the appointments. Two heads. We always thought, [name] and I always thought that two heads were better than one, because when you come out of there and you talk sometimes it’s amazing what each of you actually heard. You interpret things differently. (28-13)
		I think it’s so important to have somebody at those appointments, especially . . . when it’s getting to be the end of this kidney life. I think it’s critical that someone else is there to hear the information. (28-11)
		You have to keep notes of the stuff that happens (50-01)
		I kept my own notes and things so that if someone asked a question, we could recite it accurately. If I made any recommendation, I would recommend that a family be given a diary or a logbook and encouraged to put their observations down, because charting is important, but it’s always from one perspective, the medical, not the caregivers. And the caregivers are asked questions . . . when did this happen? Or when did that happen? . . . And you’ve got five minutes attention, you know, you’ve got to get it right. So if someone has a log, they can quickly refer to that happened on that date. This is what they said to us. This is how we responded to that. (50-02)
	Advocacy	Probably the biggest thing I’ve learned, and one of the most important things I learned, is when your partner who’s ill is down, you have to be the advocate. You have to be the medical advocate, and you have to know what you’re talking about a little bit when you talk to the professionals . . . I’m the one that will ask questions and advocate . . . I ask the hard questions. I have them explain it to us and to her. And if I need to speak to the doctor and advocate for her myself, I will . . . when your partner is the person who’s ill, somebody’s got to kind of sometimes step up. Some patients, I’m sure, are able to advocate for themselves, no problem. But in our case, it’s a kidney loss and the kidney disease just takes everything, takes all your energy. (28-18)
		Be your loved one’s advocate. You’ve got to be their advocate. Even though it’s really hard, you really need to do it . . . and don’t be afraid to speak up for yourself. (50-01)
		You’ve got to be involved . . . and you’ve got to advocate . . . it’s okay to question things and it’s okay to say, this doesn’t work for me. (34-02)
		Speak up, be heard. Open the communication channels, make sure they stay open, even if you feel pressure and look at everybody being incredibly busy and you don’t want to interfere, you don’t want to interrupt. And remember that your impact per hour, per day is far greater than theirs. (50-02)
Managing multiple roles and responsibilities	Increased household and parental load	I’m basically doing everything . . . you know, I do most of the cooking, most of the cleaning, most of everything, everything at home. (99-14)
		So I’ve had to take on pretty much I wouldn’t say all the responsibility, but the majority of the responsibility, there’s still stuff he does, like getting insurance every year and stuff like that. And he takes care of the cars. That’s his domain. But I’ve sort of taken on everything else, like the finances and just general planning and having to get things fixed (28-12)
	Balancing employment and caregiving	And if I needed a day or a few hours, they [employers] were good about it . . . I didn’t have to worry about, oh, my God, I missed too many days. They’re going to give you a letter and then you’re going to be fired type of thing. (28-14)
		When I needed to go to work, I didn’t know what was going on. I used to work from four to midnight, it was the worst thing because she would be alone in the house at night, so I did not do the four to midnight for a long time, I did everything I could to have the day shift. (99-02)
		Through all the kidney failure and the dialysis, I didn’t work because I was exhausted. I could sit down to do some programming and I wouldn’t even be able to remember my name . . . I don’t know if some people do it because there’s no way I could have gone to work and do everything that I was doing. So that’s a really huge thing. Caregivers need to have financial support to know that they’re going to be able to have groceries and pay their mortgage while their spouse or whatever is going through this kind of medical stuff. (28-12)
		I retired early because when she was sick in the hospital, I said, what am I doing? I said, I’m going to retire. I can retire. All my pensions were maxed out, so I decided to retire in December of last year, and that way I could take care of her. (28-13)

Table 3.

Illustrative quotes highlighting the care gaps that caregivers of kidney transplant recipients with a failing or a failed graft identified

Theme	Subtheme	Representative Quotes
Focus on the graft over the person	Clinical prioritization of the graft	They’re great at the clinic, but I always joke with my wife and say, we’re only renting their kidney. It’s their kidney. You just happen to carry it in your abdomen, and they want their kidney to visit every three months to make sure everything’s okay. But it’s kind of a facetious way of thinking of it. But their focus is on the graft. Their job is putting a graft in there, making sure that graft lasts . . . So their focus is on the health of their kidney . . . Because there’s not a lot of questions about how are you emotionally, how are things? How are things at home (28-18)
		They tried their best to save his kidney. So I appreciate the effort that was put in there, and I think that’s where most of the focus was and maybe why some of that, you know, more bedside manner type stuff fell to the wayside. (99-15)
	Lack of attention to mental health and emotional aspects of graft loss	I’ve been through his journey of his transplant . . . after [transplant], your nephrologist [says] “Oh, the kidney is going great. Your creatinine is great. This is great. That’s great. See you in six months.” And what about the mental health? That’s where I’m like, there’s nothing asked. (28-14).
		The mechanics of his care and his physical stuff, that was the totality of the discussion or the support (28-12)
		Quite often it feels like they’re one foot out the door when they walk in. So you’re hesitant to share because they’re giving the impression of not having time for this. And so then you will not say the thing that’s most uppermost in your mind, like, you know, concern for . . . your person. You know, you’re afraid to say, well, I think they’ve had a mood shift. I think they’re depressed or, because it’s, it’s really not as important as what their lab values are right now or their drug levels or their whatever. (11-02)
Communication shortcomings		Always share the plan. Like, I hate walking out of clinic and going so, like, they’re gonna, like, mail us? They’re phoning us? Like, what? You’re gonna have to do blood work in a couple weeks? You know what I mean? Like, always, always share the plan. (11=03)
		But all this other stuff happens and you’re in the hospital, it seems there’s just so many people involved. You get . . . so much conflicting information from different departments, different doctors. (99-14)
		I have to prepare for what’s next to be able to support him. So to stand in the corridor and look at the doctor in the eye and say, what’s next? If this fails, what’s next? . . . Let us be prepared to help him. When we’re taken aback, we’re not ready. (50-02)
		[Let] us know what’s going on, even if it’s bad news, I feel better knowing because it’s almost like you know anyway. (28-15)
Inclusion of caregivers in patient care	Not recognizing the value of caregiver input	I can help fill in the gaps. Like he’s saying he was throwing up on Saturday. It started Friday. Right. So I just think it’s important for healthcare professionals to recognize if there is somebody there, they’re usually there for a reason and they usually have good information that might help. (28-11)
		My observations were important . . . I’m close to her. I see her closer, and . . . I know what normal looks like, and I know what abnormal looks like for her. (28-18)
		I find that the clinicians need to listen to the caregiver, not, oh, I’m in a hurry . . . They got to give us time for our fears also or to understand something that’s going on, because I’m finding communication, sometimes something is missed. (28-14)
	Lack of role definition for caregiver	Make sure that the caregiver understands, that we know our role . . . So it’s not just telling us, “Here’s your list of instructions. Have a good day” . . . make sure if we need to do something that we’re shown how to do it. (28-14)
		If my role as a caregiver was defined in some way between myself and his team at the hospital in more of a, how do I put it? A structure. One, that I’m acknowledged by the team as his caregiver. And two, what do they think I’m going to do? What is their expectation of me? Is it just feed them, house them, shelter them? Or am I expected to do more, or can I do more? What can I do? Giving me some, if not tools, some information I could turn into a plan. (50-02)

Table 4.

Illustrative quotes surrounding the desired resources that caregivers reported could assist them in better supporting a kidney transplant recipient with a failing or a failed graft

Theme	Representative Quotes
Recognition of emotional labor and support	Making sure that you don’t hold it all in. Because I think as caregivers, we can do that . . . because we don’t want to put our worry on the person because they’re already worried enough. But if there was a way to let that out to . . . say, a psychological, like a therapist or somebody to talk to about what you’re feeling as a caregiver, that might be helpful for some people. (28-11)
	But even just to be offered, like, a therapist, like, once a month or something. Something like that. Or, like I say, like, a group therapy with like-minded people, once a month, that would be good. Just so . . . you’re not alone with it . . . It would be kind of nice to swap stories. (50-01)
Educational resources tailored to the graft loss phase	A safe place for caregivers to express, you know, that strange exhaustion and the emotion, like the emotional buildup and the letdown and all of that. (11-02)
	In those initial days, I guess years where it was getting really bad, and they were like, you’re going to need a third transplant that would have been helpful . . . if there are resources out there . . . support for the caregiver, for me when he was going through the kidney loss . . . like, we know you’re his primary caregiver, and we know it’s hard seeing somebody in end stage kidney failure. Here are some resources. (28-11)
	When do we get to the point where he’ll need dialysis . . . are there symptoms I should be looking for? Like, is his body poisoning itself? . . . Should I be concerned that his blood pressure is this high, that his pulse is this high? (28-11)
	I wish that he maybe had had a better idea of early signs and me too, like, I kind of wish we’d all been told, like, watch out for these things and if [name]’s feeling this way, don’t wait. Go to the hospital right away. You know, I think that would have been really helpful because I think . . . it was probably about a month to two months even that he was probably deteriorating and didn’t know immediately that’s what it was related to. Just thought he was run down. (99-15)
	What to expect when you lose your kidney? We get binders of what to expect when you have a transplant . . . it doesn’t come to you when you lose it . . . and I need to know. It’s what to expect when the kidney has stopped to function for the caregiver . . . Who to contact? Who’s the social worker or who’s the person or the nurse who’s assigned? Who’s the advocate nurse, who’s the patient advocate, so that I can call and say, it’s gone to shit. (50-02)
Training and tools to fulfill role as caregivers	I think there could be something put together, an online video package . . . you know, like giving them ideas about how to help, like general ideas about it . . . that would kind of provide a little bit of guidance maybe for caregivers and an acknowledgement, too, of their role and maybe what some things they could do. (28-18)
	How to advocate for the patient as well, that’s probably something that could be taught, like, as a group, saying, you know, imagine if you had a group of caregivers and you could do a scenario like . . . a mock up play . . . and teach people how to advocate . . . We do it in the military. We did it in the nuclear industry I worked in . . . the most important thing is running a mock up . . . that would be a good thing to add to a caregiver’s training. (28-18)
	I went for training for home dialysis, for peritoneal, first of all, and then home hemo . . . I found it really hard to learn that stuff. I’m not a nurse, and they do it with their eyes closed. So I felt like there was a lot of expectation that you just do it and you’re expected to be this great caregiver and understand how his machine works and how his body works. So I felt kind of like, man, I must be really stupid because I’m really struggling to grasp this stuff . . . I really felt unprepared and really quite nervous. (28-12)
Peer support	Hearing other people’s stories and seeing other people survive it and go through it and have a positive experience or how they handle the negative stuff. (28-12)
	Find someone else that’s going through the same experience and try and speak to them . . . try and get in a support group or find other people that are sharing the same experiences. (34-01)
	This is someone who’s had a failed kidney. This is their caregiver. They have time today to sit and chat with you if you have questions. It would be so valuable, I think, to have that opportunity to hear from other people and have that support also at that time. And I know there’s people out there who’ve been through it that are more than willing to sit and talk with someone who’s going through it because they recognize that the healthcare professionals don’t have that time or that personal experience. (50-02)
Social work	Take time for yourself . . . Just do something good for yourself, something that gives you a break. So me it’s booking time to go hiking or bubble baths. You’ve got to do something for yourself. Even if you think you can’t fit it in, you got to squeak it in or you’re just going to lose yourself. (50-01)
	At first, I didn’t have anyone to help me. I didn’t know you could also apply for federal disability tax benefits. I wasn’t even aware of that. . . . We really need services because there are so many things we don’t know about. The social worker knows a lot about this stuff because she studied it, and she knows where to send people if they need these kinds of services. (99-02)
	Here’s your pamphlet. Find this online. And, I mean, that’s all fine and good. Sometimes I don’t have time to sit and go online and read through websites and find what’s pertinent. And because I’m not a techie computer person . . . I would have rather had . . . like a social worker or somebody else to talk to. (50-34)

Findings: The Caregiver’s Role

Participants’’ accounts conveyed that caregiving was an ongoing commitment extending across the transplant journey. Although graft failure was not reported to introduce new roles, it appeared to intensify and complicate existing caregiving demands, as well as the emotional and logistical aspects of care (Table 2).

Theme 1: Supporting Patients’ Wellbeing

Caregivers described that they played a significant role in supporting the emotional and social well-being of the recipient during graft loss. Two subthemes emerged.

• •Emotional Support. Caregivers frequently identified themselves as the primary providers of emotional support, often prioritizing this role over physical care tasks because the emotional impact of graft loss was so significant. This support was evident through vigilant monitoring (regular “check-ins” on the recipient’s mental state, tracking emotional fluctuations, and a heightened awareness of distress), being “present” (physical and emotional availability, listening, and patience), and doing emotional labor (validating the recipient’s sense of loss and maintaining emotional stability). Many described emotional support as their most critical responsibility during graft loss, as it is a major disappointment that has profound repercussions on patients. Fulfilling the responsibility of emotional support could be challenging because the experience of graft loss was devastating for caregivers as well. They had the dual burden of managing their own emotional struggles while simultaneously providing encouragement, boosting spirits, or being a “cheerleader” to help recipients cope with the experience of graft loss, which could include depression or feelings of wanting to give up. Staying positive and strong for their loved one sometimes meant hiding or masking their own emotions.
• •Attention to Social Needs. Graft loss and the transition to dialysis were described as barriers to social participation. With a functioning graft, recipients often experienced greater independence and fewer restrictions on social life. In contrast, graft loss brought about physical limitations, such as fatigue and exhaustion, that reduced energy for social engagement. The time constraints of a dialysis routine could also contribute to the shrinking of social networks. Caregivers noted that the immediate family often became the primary source of social interaction. To counter this isolation, caregivers described engaging recipients in enjoyable and distracting activities, recognizing that during graft loss and transition to dialysis can feel “limited” and “lonely.” They described doing things to bring enjoyment, laughter, or a “mental break” or “escape,” such as outings, watching movies, or attending sporting events.

Theme 2: Adapting to the New Reality of Graft Loss

Following graft loss, caregivers described a significant increase in responsibility and dependency, often assuming a wide range of tasks to support the health and daily functioning of the recipient. The most frequently mentioned areas are as follows:

• •Dietary Management. Following graft loss, recipients faced strict food and fluid restrictions that required vigilance and adherence. Caregivers often took on the role of understanding and managing new dietary needs, adapting menu planning accordingly. They also described being proactively educating themselves about nutrition and fluid intake and being vigilant about adherence to optimize the recipient’s health.
• •Home Dialysis Support. Home dialysis was described as a complex procedure that involved a transfer of responsibility to patients and caregivers. It was discussed as a major undertaking for caregivers with a steep learning curve entailing managing the supplies, prepping and operating the machine, disposing waste, and dealing with technical malfunctions (often in the middle of the night). Some caregivers discussed overseeing home dialysis as highly stressful and demanding.
• •Logistical Coordination for Medical Appointments and Treatments. Caregivers explained that they sometimes took on a significant amount of the logistical labor to ease the burden on recipients during and after graft loss. Providing transportation was identified as 1 of their most time-intensive responsibilities, especially when it entailed routine commuting for in-center dialysis (typically 3 weekly visits). Additional journeys for transplant clinic follow-ups, specialist appointments, and unpredictable hospital trips for complications were time-consuming and had a disproportionate impact on rural caregivers who lived at a greater distance from the hospital or the transplant clinic.

Theme 3: Navigation of Care

Recipients were faced with complex decisions about their future care and went through a period of transitioning to a new treatment. Many caregivers saw themselves as active participants in navigating care and the healthcare system and took on the responsibilities of information tracking and communication, as well as advocacy.

• •Information Tracking and Communication. Some caregivers stressed the importance of being an avid note-taker to accurately remember important details in order to facilitate better communication with care teams, advocate for the recipient, and help with the cognitive burden of graft loss on them. Some described that they kept logs, binders, or notebooks to record what happened at medical appointments and tracked changes associated with the complex and fluctuating symptoms of graft loss. They thought this practice of keeping informal medical records from the caregiver and recipient’s perspective should be recommended and encouraged. Likewise, many recommend attending all medical appointments to stay informed, especially when the patient is faced with transitions and the need for care planning and decision-making. Being at appointments to listen and ask questions was also seen to benefit collaborative understanding because, as some participants noted, people hear different things, especially when they are processing difficult news.
• •Advocacy. Sometimes caregivers described acting as advocates by speaking up, being assertive, and asking difficult questions to ensure that the recipient’s concerns and priorities are being heard. Some described learning not to be afraid of advocacy, even though it can be intimidating to encounter situations that some described as “facing down” or “standing up” to doctors.

Theme 4: Managing Multiple Roles and Responsibilities

Throughout the experience of graft loss, caregivers described assuming increased domestic and additional financial responsibility that meant needing to balance employment and caregiving.

• •Increased Household and Parental Load. Although recipients were experiencing graft loss, caregivers explained that they were tasked with the burdens of household management. Participants spoke of an increase in responsibilities around the house and with family that are often time-consuming but unrecognized and undervalued chores, such as shopping, cleaning, laundry, yard work, errands, pet care, paying bills, as well as parenting and childcare.
• •Balancing Employment and Caregiving. Some caregivers were the sole income earners, and many felt additional financial responsibility in cases where graft loss meant that the recipient had to stop working, with or without disability leave. Some mentioned the difficulty of juggling responsibilities and needed their employers to be flexible and understanding, and appreciated time off and the ability to work from home. Others found the employment and caregiving too difficult to balance and said they took early retirement or needed to stop working to better fulfill their role as a caregiver. Most caregiving situations entailed some degree of lost household income.

Findings: Care Gaps

Caregivers offered valuable insights into their experiences and perceptions, highlighting areas where care delivery could be improved. Three overarching themes and 4 subthemes emerged (Table 3).

Theme 1: Focus on the Graft Over the Person

• •Clinical Prioritization of the Graft. A critical observation that emerged in our data was that the main priority of the transplant team, from the caregiver’s perspective, was taking care of the kidney transplant and not the recipient as a whole (“they’re treating a kidney, not a person”). Caregivers expressed that the clinical team’s main concern was whether the “kidney’s working.” During graft failure, caregivers perceived the main goal was graft-centered (to “save the kidney”) and sometimes gave the impression they did not have the time to deal with other issues or provide holistic or person-centered care.
• •Lack of Attention to Mental Health and Emotional Aspects of Graft Loss. Some caregivers specifically mentioned that care was “strictly medical” with other aspects of care overlooked, including “bedside manner” and mental health. They perceived that the healthcare team was not always very aware of the recipient’s overall well-being. It was also noted that the emotional aspects of graft loss were not acknowledged in the clinical setting.

Theme 2: Communication Shortcomings

Many caregivers were satisfied with the communication they had with the nephrology clinic in general, but found that during hospitalizations, communication could become less reliable when multiple departments are involved, and they often heard conflicting information from different people. Poor communication could exacerbate a sense of lack of continuity and uncoordinated care. Some caregivers expressed the need for clear care plans so that they can understand the next steps. As well, some also wished that care teams were frank about “bad news,” noting that it helped them feel more prepared to support the recipient.

Theme 3: Inclusion of Caregivers in Patient Care

• •Not Recognizing the Value of Caregiver Input. Caregivers described that they played a significant role in communication with the care team, and many saw themselves as repositories of knowledge about the recipient’s condition and health history. For this reason, many thought it was important for care teams to regularly acknowledge caregivers and include them in conversations, especially during an evolving medical situation like graft loss and the transition to dialysis.
• •Lack of Role Definition for Caregivers. Caregivers provided a substantial amount of patient care and support; however, it was noted that the expectations of caregivers were not always clearly established. One caregiver expressed that she wished: “my role as a caregiver was defined in some way between myself and his team at the hospital in more of a, how do I put it? A structure. One, that I’’m acknowledged by the team as his caregiver. And two, what do they think I’m going to do? What is their expectation of me?” Inclusion and guidance from healthcare teams, and recognition that caregiving may become more intense and complex during graft loss, would benefit caregivers in defining and fulfilling their roles and responsibilities.

Findings: Resource Gaps

A common perception among participants was that caregiver-specific resources were lacking, including emotional support and educational materials tailored to their role. Many caregivers felt unseen in the transplant journey, noting that though the recipient was rightly the focus of care, their own needs were often overlooked. They expressed a strong desire for the following:

Theme 1: Recognition of Emotional Labor and Support

Caregivers described the emotional strain of supporting a loved one through graft loss, and many noted the absence of dedicated support resources for caregivers. Some would have liked to have had, or been offered, psychological support, such as access to therapists or group counseling, to process their own emotions without burdening the recipient, mentioning the importance of having a safe space to express feelings of exhaustion, fear, and grief; some thought that offering emotional support to caregivers should be a standard part of care. After being through graft loss, some described the transplant experience as a “rollercoaster” and how they had to develop inner strength and resilience not only to cope with themselves, but also to continue providing emotional support to the recipient.

Theme 2: Educational Resources Tailored to the Graft Loss Phase

Caregivers described that they want clear, accessible information to help them understand and respond to the medical and emotional realities of graft loss. Participants offered numerous suggestions about educational resources that could be useful, including materials that explain graft loss in layman’s terms, outline warning signs, and offer anticipatory guidance of what to expect, with navigational support (i.e., clear points of contact). Guidance on the transition to dialysis was especially needed in cases where the recipient had received a pre-emptive first transplant.

Theme 3: Training and Tools to Fulfill the Role of Caregivers

Participants expressed a desire for practical training to help them effectively support a recipient through graft loss and advocate for their care. Useful training would be guidance on symptom management, emotional support strategies, and skill development related to becoming a strong advocate for the patient. Suggested tools were online video packages, scenario-based learning, and written guides that are tailored to the caregiver’s responsibilities and roles.

Theme 4: Promoting Peer Support

Caregivers expressed that they would value the opportunity to connect with others who had gone through similar experiences with graft loss. Peer support groups or peer mentorship were mentioned as a potentially vital source of emotional relief, validation, and advice. Some recognized the importance of hearing stories from other caregivers to learn coping strategies and feel less alone, and stressed the importance, or even necessity, of taking time for themselves. Participants frequently mentioned that they would advise other caregivers to make time for things they enjoyed to manage stress, mitigate burnout, and preserve their own sense of well-being.

Theme 5: Access to Social Work Support

Having access to a social worker to help navigate practical and financial issues was also recognized as an essential source of support. Participants identified social workers as essential allies in managing logistics, accessing benefits, and coordinating care, but such social services were not always available.

Discussion

In this qualitative study, we explored caregivers’ perspectives on kidney graft loss. Our findings reveal a connection between the caregiver’s responsibilities and gaps in care and resources. Caregivers’ efforts to support patients’ well-being, adapt to new medical realities, navigate care, and manage multiple roles highlighted concerns about the clinical focus being narrowly centered on the graft itself, limited communication, and the lack of caregiver inclusion. These insights underscore the need for more holistic, coordinated, and inclusive approaches to care that support both patients and their caregivers throughout the process of graft failure.^39,40 Many of the care gaps highlighted by caregivers were also highlighted by recipients.³⁰

A recurring theme was the emotional and psychosocial support caregivers provide. This made them highly aware that the current standard of care often overlooks mental health and emotional needs. Caregivers felt that their emotional labor was largely unrecognized, with few resources available to support either themselves or the patients during the emotionally taxing experience of graft failure. Despite their significant contributions to patient well-being, caregivers sometimes reported feeling excluded, unacknowledged, and undervalued by healthcare teams. Emotional support for graft loss is not formally integrated into care plans, leaving caregivers to shoulder this responsibility without support or recognition.

Our findings also highlight the increased caregiver burden following graft loss, especially with dialysis initiation. Similar to previous literature on caregivers of patients with native kidney failure,^5,7, 8, 9, 10, 11, 12, 13, 14, 15, 16 our study found that graft failure and dialysis initiation heightened caregiver burden. Although the merits of home kidney replacement therapies are well recognized, caregivers describe them as demanding. Indeed, caregivers of people receiving longer dialysis or home nocturnal dialysis report a higher perceived burden and a greater decrease in quality of life.^14,41,42 These findings underscore the need for targeted support strategies that address the evolving demands placed on caregivers, particularly during transitions such as dialysis initiation, and highlight the importance of integrating caregiver needs into clinical care planning with appropriate education and training.

Another important finding was that caregivers play a crucial role in navigating the healthcare system. Participants emphasized the need for more educational resources about the graft loss phase and clearer communication from care teams that includes caregivers. These improvements could help caregivers better anticipate challenges and support and advocate for patients more effectively. Access to social workers was vital for addressing financial and employment concerns, ensuring both patients and caregivers are informed about available support and income replacement options. Given the detrimental impact of caregiver strain on patient outcomes and the interdependent nature of the caregiving dyad,^10,43,44 we contend that alleviating the caregiving burden and developing appropriate resources should be prioritized.

Our study has several strengths. First, the bulk of previous literature in nephrology has focused on examining caregiver burden using quality of life or other quantitative measures. Our qualitative study allowed an unconstrained and in-depth exploration of caregiver perspectives, allowing the emergence of unique themes related to the distinct caregiving roles. Our sample includes a higher proportion of men and parents than previous studies. However, limitations include a potentially skewed sample of educated and engaged caregivers and limited racial and ethnic diversity. The inclusion of only Canadian participants, a country with universal healthcare, may limit the transferability of our findings to different countries and health systems. Although this may not be representative, we maintain that the perspective of our sample is highly valuable, while acknowledging that it is not possible to generalize the experience of all caregivers in all contexts, particularly because another limitation is that none of our sample caregivers were caring for a recipient who had opted for conservative care.

Overall, our findings have implications for the global nephrology community as a synthesis of 61 studies from 21 countries highlighted the role caregivers play in supporting patients with kidney failure.¹² Similar patterns likely apply to graft failure. Furthermore, a Kidney Disease: Improving Global Outcomes controversies conference found that psychological preparation and support for graft loss were key priorities for care practice improvement.⁴⁵ We believe that informal caregivers are key unpaid healthcare providers who can help improve the care and outcomes of kidney transplant recipients. Overwhelming evidence emerging from oncology and other fields indicates the integral role of caregivers in enhancing the quality of life, symptom management, and outcomes for patients with devastating and terminal illnesses.^46,47 In addition, caregiver-focused interventions can improve patient well-being and psychological burden.^47,48 Similar strategies could be adapted within nephrology, and enhanced caregiver engagement and integration may serve as a key strategy to improve outcomes. In conclusion, effective training, education, and engagement of caregivers should be considered as part of the broader approaches that are being undertaken to improve the outcomes of recipients who experience graft loss.⁴⁵

Disclosure

SS has received an education grant from Amgen Canada to improve the care of patients with graft failure and has received speaking honorarium from AstraZeneca. All the other authors declare no competing interests.