Identifying Needs and Barriers to Engage Family Members in Transplant Candidate Care

Abstract

Introduction:

Friends and family members provide critical support to patients on the waitlist for deceased donor kidney transplantation. However, little is known about how best to support and engage them effectively to improve patient outcomes.

Methods:

We conducted 5 focus groups with the family members of patients on the waitlist for a deceased donor kidney (n=23) to identify individual- and group-level targets for an intervention. Discussions encouraged participants to reflect on their support roles, experiences at the transplant evaluation, interactions with providers, knowledge of transplant options and expected outcomes. Transcripts of study sessions were coded using an iterative and inductive process.

Results:

The thematic analysis produced two main themes related to experiences providing care to patients on the waitlist for kidney transplantation. First, participants revealed that supporting a patient on the waitlist created challenges that reverberate through their entire social structure. Family members discussed frustrations with adapting to their patient’s kidney health needs, feelings of isolation, and barriers to identifying and building effective support networks. Second, participants described multiple challenges that prevented their patient-family unit from making informed decisions about transplant care. These challenges included communication with their patient, patients resisting help, difficulty understanding the information, and feeling helpless.

Conclusion:

Family members providing care to patients with end-stage kidney disease require targeted support to overcome the unique challenges associated with their role in helping to meet their patient’s clinical needs. Interventions to engage friends and family members in the care of kidney transplant candidates need to effectively address these challenges.

Introduction

Kidney transplant confers survival and quality of life benefits for the treatment of end stage kidney disease (ESKD),¹ but the process of getting transplanted is complex and challenging. Many medically eligible patients are never listed for kidney transplant due to inability to complete the evaluation process,² and more than half of those listed are never transplanted due to death or removal from the list.³ While much of the limited access to transplant is caused by supply-demand mismatch, modifiable patient-level behaviors and decisions can improve the likelihood of kidney transplant, including completing the transplant medical evaluation, adhering to necessary but burdensome medical recommendations, seeking living donors, and willingness to accept an increased infectious risk or marginal quality kidney.

Despite the efforts of transplant centers, patients have limited knowledge about transplant options and likely outcomes on the waiting list.^4–7 In addition to knowledge gaps, studies show that ambivalence,⁸ uncertainty,⁶ and needing social support,⁹ are key barriers to kidney transplant. Patient-centered¹⁰ and culturally sensitive¹¹ interventions have been efficacious at closing knowledge gaps and increasing interest in pursuing transplant, but have not been as effective at improving deceased donor transplant rates. At the same time, qualitative studies in kidney transplant candidates revealed that members of patients’ social support networks provide critical cognitive and structural support to candidates,¹² and home counseling interventions that include patients’ social support networks have been shown to increase patients’ likelihood to ask a family member to consider donation and rates of living kidney donation.^13,14 The latter set of interventions build on socioecological models of health behaviors and decision making to modify factors that are often obscured.

Interventions targeting social support networks have been shown to be effective for a variety of other disorders and for improving rates of living kidney donation,^12–14 suggesting incorporation of social support networks into interventions targeting both living and deceased donor transplant is warranted (eg those meant to improve access to the waitlist, knowledge, decision support on donor options, etc.). In addition, patients say social support is critical,¹² but current usual care does not specifically target support network members who are not already actively participating. Further, insight into the experiences of support network members and the barriers they face is limited to indirect reports from patients. To optimize inclusion of social support network members in future interventions, we sought to characterize the barriers and facilitators they experience in supporting transplant candidates, and to refine the Kidney Transplant Candidate Support framework,¹² used for guiding interventions that enable more effective support to improve clinical and patient-centered outcomes.

Methods

Design

We conducted five focus groups with adult members from the support networks of kidney transplant candidates on the waitlist for deceased donor transplant. Participants in each focus group represented multiple support networks, but as many as 3 members of an individual patient’s support network could be present. Each participating friend or family member provided written informed consent and the study was approved by the Human Subjects Research Committees at the 2 participating transplant centers. Participants received a $40 honorarium for their participation. This manuscript was organized according to the COREQ guidelines for reporting qualitative research.

Setting

Focus groups were conducted in private meeting rooms in the participating transplant centers and public libraries in Minnesota. The library settings were selected to facilitate the participation of caregivers more than 30 miles from the transplant centers. Focus group discussions were led by a white female social science researcher or a black male social science researcher, and a white female physician trained in qualitative research was in attendance to take field notes and address clinical concerns that emerged over the course of the focus group meeting.

Population

The combined deceased donor waitlists at the two centers consist of 990 candidates from the Upper Midwest. Of the waitlisted candidates in each center 39.0% and 65.5% were white; 42.0% and 42.6% were female and 9.5% and 22.3% were 65 years or older.^15,16 We anticipated that the sample would mirror the demographics of the waitlist, especially when considering family members who cohabitate with their patient.

Sampling

Participation in the study was limited to the adult friends and family members of kidney transplant candidates. Candidates were not recruited to participate. Participants were recruited through convenience sampling using patients on the deceased donor waitlist for kidney transplant at 2 transplant centers in Minnesota.

Information / Data Collection

Focus group discussions were structured around four areas: (1) understanding of likely outcomes and treatment options (eg wait times, deceased vs. living donor transplant, etc.); (2) experiences attending the evaluation for wait-listing and discussing this information with patients; (3) education and communication experiences with providers; and (4) specific roles and barriers that participants and other family members experienced while supporting their patient. After gathering data from participants on their experiences and understanding about the process of getting a kidney transplant, each session was supplemented with a brief demonstration of the Scientific Registry of Transplant Recipients (SRTR) Kidney Transplant Decision Aid to provide an overview and prompt discussions of available treatment options and likely outcomes.¹⁷ When participants did not attend the waitlist evaluation and/or had limited contact with providers, participants were prompted to comment on why, and how they would prefer to be involved in these critical moments in the transplant care continuum.

Discussions were audio recorded and transcribed verbatim. Field notes were drafted during and after the focus groups by the investigators who were present, but not leading the discussion. Surveys administered prior to the start of each focus group captured information on participant demographics and experiences providing support to their patient. One social scientist used Dedoose coding software version 8.2.32 (Los Angeles, CA: SocioCultural Research Consultants, LLC) to code and organize data. Transcripts were open-coded and axially-coded through an inductive strategy that prioritized participant reflections on past experiences and suggestions for interventions.^18,19 A preliminary code book was developed and a second social scientist as well as the clinician trained in qualitative research methods reviewed and discussed codes for accuracy and consistency. Disputes over code definitions and applications were resolved through discussion, and all the transcripts were re-examined to ensure that the code applications were correct and consistent across transcripts, resulting in a code book consisting of 96 codes. Interpretive themes were identified following a review of 503 excerpts and were later verified by the physician and second social scientist. Representative quotations illustrating themes were identified and included in this manuscript.

Results

A total of 23 family members participated in 5 focus groups with between 2 and 7 participants each (2, 3, 4, 7, and 7 per group). Focus group discussions were between 60–100 minutes in length. Characteristics of the participants are shown in Table 1. The majority of the participants were white (87.0%) and earned over $75,000 a year, but educational achievement was evenly distributed with a slight majority completing some college. A majority of participants (69.6%) reported having some understanding of transplantation but wanted to know more.

Table 1.

Focus Group Participant Characteristics.

Characteristic	N =23
	Mean (SD)
Age (Mean, SD)	52.2 (13.9)
	N (%)
Female gender	17 (73.9)
Race
Black	3 (13.0)
White	20 (87.0)
Education
No college degree	13 (56.5)
College degree	6 (26.1)
Advanced education	4 (17.4)
Employment
Employed (full-time, part-time, homemaker)	18 (78.3)
Retired/unable to work	5 (21.7)
Income
< $30,000	3 (13.0)
$30,000 – $75,000	2 (8.7)
> $75,000	12 (52.2)
Did not answer	6 (26.1)
Relationship to patient
Partner/spouse and other family members	22 (95.7)
Community member/friend	1 (4.3)
Attended evaluation with patient	14 (60.9)
Years patient has been on dialysis
0 years	9 (39.1)
< 1 year	3 (13.0)
1–5 years	8 (34.8)
> 5 years	3 (13.0)
Subjective understanding of transplant
Don’t know enough	4 (17.4)
Understand a little, need to know more	16 (69.6)
Understand enough	3 (13.0)
Source of kidney transplant information
Kidney transplant center	10 (43.5)
Patient / own research / other	13 (56.5))

Participants reported a range of challenges that limit their ability to provide support to their patients. First-hand insight into interpersonal barriers, knowledge gaps, and existing patient support that was centered in clinics reveal potentially modifiable targets for interventions. Two primary themes relating to support roles and decision making emerged from the analysis of code applications and associated excerpts; (1) advanced and end stage kidney disease was a disease of the whole support network and (2) participants felt unprepared to make decisions about transplant.

The themes emerged from a consensus of most of the participants’ experiences. However, variations in care roles and context mediate individual experiences of the themes (eg participating in the evaluation, ESKD in the family, and family dynamics). Additional supporting quotations are included in Table 2.

Table 2.

Supporting Quotations Illustrating Themes.

Theme 1: Advanced and End Stage Kidney Disease is a disease of the whole support network

You just learn to be resilient and live with things and internally you need to make decisions about your life and I’ve made decisions. And I’ve taken care of – tried to take care of myself. And that’s what you need to do. It’s not just about him, and I’ve told him that. It’s not just about you buddy.

So my husband has been on a list for three plus years. And he wasn’t put on the list right after, and he does dialysis. But it’s the peritoneal – in the abdomen so that he can work. And so I can work too.

And you got to go in and you got to have surgery. And you got – he’s been in a couple times and had surgery through that. And it’s a stressful thing with this … it does get very scary.

And so I’ve been – I joined the same gym that he’s at. I’m making him go to the gym with me. I even joined a class so he’s actually there right now and I’m not… so yes I do feel that I’m a part of the care team. I guess I’m not his medical care team.

Sub-theme: Friends and families caring for patients with ESKD feel disconnected from other caregivers and stakeholder communities

… if you offered classes or something similar to an AA group but obviously for kidney caretakers, people and family members where you could meet weekly or monthly or something. Come and share in a group, you circle off in a small group and you get to know people and it will be private and confidential, but you would share your thoughts and what you are going through.

It would have [been] nice if she would have had someplace where she went with other people to do this before. I would encourage her to do something like that.

But she was – she just bumped into somebody that had it. So it probably wouldn’t have hurt her to sit down and just have a few more people to have support on that.

Sub-theme: Families prioritize first-hand knowledge about transplant options and expectations from recipients and their families

She did find somebody else that had kidney transplant, and she was visiting with them and stuff, so that helped a little bit.

You’re just so overwhelmed. You’re just trying to stay alive, so it would be nice if somebody has gone down that path can give you some of those helps.

I actually have a friend of mine who was a co-worker of mine. Her husband has had a transplant before … So I do have her to talk to and that stuff because she’s been through that with him before.

You know what, tell people that have had transplants available or their family members available because I get a lot of my information from my friend whose husband had a kidney transplant. And you know she keeps me kind of informed what’s the next step while you’re waiting…

I love the idea of a peer mentorship.

Theme 2: Unprepared to make decisions about transplant

Sub-theme: Difficulty communicating with their patients about ESKD and support roles

Yeah, they come and tell you but if they do not tell you everything and if you are not there to see exactly what they are going through, then you do not realize how serious it is

But I think, at the end of the day, that was a little–I wish I would have been there because I would have had a ton of questions versus he’s just like “Oh, I’m good. Life’s good.” That would be my only comment.

Female Participant: I do not know if my dad would [laughter].

Moderator: Maybe, maybe, yes.

Female Participant: I do not know I think he is hoping to be on the slot for surgery.

Female Participant: Even if he wasn’t, he would probably like – I do not want you to know. (Group 2)

My mom tries to talk about positive things, just dance around the subject [ESKD and mortality]… As much as I want to know, it hurts me to hear it so sometimes I do not even ask because I know that is bad, but I just do not want to think of being without my mom.

Female Participant:…: I think if you can go with your patient or the person to the doctor that really makes a big difference too.

Female Participant: It does.

Female Participant: Because they will not tell you everything, some people will not tell you. (Group 2)

Sub-theme: Patients resisting help due to not wanting to feel like a burden

My parents don’t tell a lot about their health issues … It’s hard for them to accept that they’re getting to the age of where their parents were and they need help. To go to these doctor’s appointments and that kind of thing, it’s like knocking down their pride because they should be strong and young again and not have to depend on somebody.

Because we felt like it was an insult to have her go through all that testing and then two days before she got her final yes, which we thought she was getting, that we said oh by the way we just went and had a kidney transplant from a deceased donor.

Because we find that maybe, or I’ll just say my brother – he kind of resists a little bit of help like no, you don’t have to do that either because he just wants to try and do it on his own and doesn’t want to feel like he’s relying on other people or for whatever reason.

She does not like to share with me very much stuff because she does not want me to worry about her

… they say bring somebody with you for this appointment or whatever, because there’s going to be a lot of information. It’s always good to have two people. It doesn’t matter who they are, that’s your choice. But to say, this is a normal thing to have a person with you and you make the choice who, but it’s not being a baby to ask somebody to go with you. It’s just part of the protocol.

Sub-theme: Difficulty understanding information

The worst, I think, they gave us our options and, like I said, we had to go back and ask a couple more times because they gave them to us and they weren’t always clear. Once we got back then we needed to – well, did they say this or did they say that? Or I thought they said this, and I thought they said that… how much was the medication going to be? Can we afford it? Do we have to change our lifestyle

There’s just too much at once. And so I think that a follow [-up]review with the appropriate support groups and making sure and evaluate everything and make sure the[y] understand

A lot of appointments in a short amount of time. In bouncing from one building to another, and you have this amount of time. But if you wanted to talk to the doctor a little longer, you had to speed it up. My mom and her sister went along to another appointment while I sat and asked a few more questions because they were going to be late for the next appointment.

And plus, sometimes you get so much all at once and they’ll say, “But we told you that” and it’s like you know so much was coming in at that time. I might not have connected to that. Even though you might have said it; I didn’t connect to it. Now three years later, five, six years later. Now I’m going oh is that what that meant or you know, being proactive I guess is important.

I was told today by the transplant team. Don’t ever turn anybody away, let the transplant team people do the evaluation and literally they gave me this information about the kidney pairing where you don’t even have to have the same blood type to be able to offer a kidney. It will go into a pool. There’s a group and we’ve been on this for eight years. And this is the first time that it’s really made sense to me that we could do that.

Sub-theme: Feeling helpless / needing guidance on how to help

What do we need to know in the process as support people that we can do? What do we need to know? I don’t know what I need to know to support. I mean, I guess I need maybe a little bit of direction on well, here’s something you can do to help.

I would have loved to know that’s what he was going for [evaluation]. Then, I would have gone with him so I could have asked questions. So I really feel like I’m in the dark right now on this whole thing because I really don’t understand the process. I know it’s challenging because of HIPPA laws and all that kind of stuff.

I agree with you because as a family member they’re a huge part of your family and you want to support that. So you want to bring them meals. They’re already under so much stress with what they’re going through, so you want to be all the support you can. So it’s like bringing them something, preparing family meals that might be more supportive of what they’re going through, to make sure you know, we’re a part of that.

What can I connect to for him and how can I support him and guide him and maybe help provide some questions that he could ask next time or you know, what his – what he’s entitled to. And just to be there because he’s under all the stress.

Like a family support group would be helpful. Hey, we have this open family support group and you can come in. And you could share information and resources and how did you deal with this and what happened here, so that would be helpful.

Yeah, I know it is better to get a living. I know in the beginning of it, I was pregnant I had offered to get tested but clearly you cannot get tested when you are pregnant. I learned through researching because I was feeling very helpless and wanted to do something.

Theme 1: Advanced and End Stage Kidney Disease is a Disease of the Whole Support Network

The families of kidney transplant candidates overwhelmingly indicate that they experienced stressors and challenges stemming from the clinical needs and support they provide to their patients. While the specific challenges varied, many participants indicated that supporting a family member with ESKD created unforeseen difficulties that disrupted the family dynamics. For example, many participants lamented the restrictive renal diet, and described instances when they had to prepare multiple meals to accommodate their patient and the rest of their family. Others described restrictions and stress on family routines created by their patient’s need to undergo regular dialysis treatments three times a week. Nearly all of the participants described ways the dynamics of their family relationships shifted following their patient’s diagnosis with ESKD. This was clearest in situations where patients were considering living donor transplantation; familial relationships shifted around considerations for who could be an acceptable candidate for donation. These concerns were exacerbated in families with histories of ESKD and those with multiple individuals in need of kidney transplantation.

I mean especially when you’re talking years. Now not only is that one person affected, it’s affecting the whole family. And from you on down to your children or whatever. Everybody is affected, not just you and your spouse. It’s going to be everybody.

(Female, Group 1)

We already went through the shame of how dare you ask your wife for a kidney, which oh, you wouldn’t believe. Yeah. His family was mortified that I would give a kidney and have two young children and “How could you do that to your wife?” blah, blah, blah. They didn’t say it outright, but there was innuendos

(Female, Group 1)

Two sub-themes emerged broadly reflecting family isolation and their eagerness to connect with kidney transplant recipients for mentorship, education, and expectation management.

Sub-theme 1. Friends and families Caring for Patients with ESKD feel Disconnected from Other Caregivers and Stakeholder Communities

Participants described feeling isolated from other patients and caregivers. Reflections on the limited opportunity to engage with others who are supporting patients with ESKD cast the absence of these interactions as a barrier to acquiring knowledge that would help them to care for their patients. In addition, families felt that as caregivers, they lacked a support network that they can draw on for support. Multiple participants suggested that the focus group study sessions were in fact their first opportunity to reflect on their roles as caregivers and openly discuss interpersonal challenges with their patients. Participants who had more interactions with other patient-caregiver units through support groups and other organized activities (eg Transplant Olympics) reflected positively on these experiences. Some highlighted instances when these interactions served to manage expectations about waitlist and transplant outcomes or provide knowledge about previously unknown treatment options. Similarly, participants caring for patients seeking a second transplant expressed a desire to mentor patient-family units seeking their first transplant. Many participants support transplant programs and patient advocacy groups facilitating these activities in the future.

But this [caring for a patient with kidney failure] feels isolating. Everybody is going through it individually ….grabbing the little bits of resources …

(Female, Group 1)

My sister, I didn’t say, but she also had cancer. And I remember going to the chemo place and it’s like a big circle of people getting [chemotherapy] – so I think she’s used to that kind of community thing.[…] And someone going through dialysis without having that other kind of community thing with chemo, the community support, it might be hard to do.

(Male, Group 1)

Sub-theme 2. Families Prioritize First-Hand Knowledge about Transplant Options and Expectations from Recipients and their Families

Building on the previous theme, the second sub-theme highlights the perceived value of first-hand knowledge from transplant recipients and their families. Participants searched widely for connections to people with transplant experience and engaged ties to individuals on the peripheries of their familial, professional, religious, and social networks who have received a transplant. Many described their patient’s apprehension about disclosing their transplant needs outside of their immediate family. Others reflected on formal networking and educational opportunities offered by transplant programs and patient groups, but noted the limited offerings and costs associated with attending—distance being a major barrier for many. In addition to providing an opportunity to gain knowledge, participants viewed interacting with other patient-families as an opportunity to locate support for themselves.

… maybe have a list of people who have been through it who you can contact for first-hand information. I’ve had people contact me and I’ve been able to tell them my experience. There’s nothing like getting it firsthand from somebody.

(Female, Group 1)

I shared with other people about being a donor, and then I learned a lot about how other people were taking care of their spouses or their kids or whatever and what they were going through. To me, it kind of put my life in perspective …

(Female, Group 1)

Theme 2: Unprepared to Make Decisions About Transplant

Participants indicated that they and their patients were unprepared to make decisions about treatment options that could maximize outcomes for their patients (eg living vs. deceased donor transplant, wait-listing at multiple centers, Public Health Service increased risk donors, high kidney donor profile index donors, etc.). We noted multiple barriers to decision-making and describe four as sub-themes that family members indicate also impede their ability to support their patients: (1) difficulty communicating with their patients, (2) patients resisting help due to not wanting to feel like a burden, (3) difficulty understanding information, and (4) feeling helpless / needing guidance on how to help. Combined, the four barriers negatively impact communication between stakeholders, patient education, and decision support.

Sub-Theme 1. Difficulty Communicating With Their Patients About ESKD and Support Roles

Family members described multiple communication barriers that hindered their ability to identify and fulfill support roles. Participants recalled instances when their patients withheld information about treatment options, declined to reveal the urgency of their transplant needs, and even hesitated to divulge that they were seeking a transplant. These information asymmetries were exaggerated in cases when family members were not able to attend the transplant evaluation, education sessions and follow-up visits. In addition, some participants indicated that they themselves found it difficult to initiate conversations with their patients about transplant options and possible outcomes due to the emotional weight of contemplating their patient’s mortality.

What she was telling us was not the full [extent of ESKD progression]–it was what she wanted [us] to hear.

(Female, Group 1)

I remember when my dad told us that he had it [kidney disease] and he kind of waits until we are all together and he will do it but he does try to downplay it definitely. I have to get more information from my mom later and she will fill me in more. Again, he would never tell us that he would have a higher life expectancy getting a living donor.

(Female, Group 2)

Sub-Theme 2. Patients Resisting Help Due to not Wanting to Feel Like a Burden

Multiple participants in three of the five focus groups reported that supporting their patient helps to manage their own anxieties about their patient’s transplant care. In this context, instances when patients were resistant to support became extremely distressing for potential caregivers. While the cases raised in the focus groups varied, it was common for family members to perceive that patients resist help as a means to avoid burdening their families with their care needs and the emotional work of managing expectations. Participants reported that patients were resistant to their families considering living donation and searching for living donors, in part due to a combination of the overestimation of the potential risks to donors and apprehensions tied to shame and perceived stigmas. In many cases, such barriers and those around being invited to attend medical appointments, receiving information from providers, and assisting with decision making reflected familial roles, with parents resisting full disclosure with their children and/or support roles being unevenly distributed amongst siblings.

I want to learn how to talk to my mom … She is so worried about me and being a financial burden for us if she does do a transplant. She said if I live for a year then I am leaving you with all this debt.

(Female, Group 2)

I think that’s the main problem with a lot of … older people. They [think], why say something because now I’m going to take a day off from work, which you can’t afford…. So I think that’s where the big problem comes in is they don’t want you to waste your time on them …, so you don’t get all the information.

(Female, Group 1)

Sub-Theme 3. Difficulty Understanding Information

Across participants, family members who attended the evaluation for candidacy and those who did not described knowledge gaps and difficulty comprehending information on treatment options and outcomes. Participants who joined their patients in the education sessions suggested that the limited time and condensed schedule of consultations impeded comprehension and discussion of treatment options, likely outcomes, and even the underlying cause of their patient’s transplant needs. Many described being overwhelmed with the amount of information presented and a need to follow up with providers at a later date for clarifications. Participants who did not attend the evaluation and patient education relied on information conveyed through their patient or other caregivers who attended. Often these participants raised concerns about their patient’s comprehension of the information and willingness to convey all of the knowledge gained—most often information about mortality, wait times, and living donor options.

I think sometimes we had to go back because we misinterpreted or her idea (about) what the doctor said and what I heard were different.

(Male, Group 2)

… we go to this clinic and we get all this information in one day and we’re sent home and it’s like, okay. I got some paper here, but I can’t quite remember, what did they say about that?

(Female, Group 1)

Sub-Theme 4. Feeling Helpless / Needing Guidance on how to Help

Finally, participants described feeling helpless and being unprepared to support their patients. For some family members, knowledge gaps and barriers in communication prevented them from identifying practical ways to support their patients and limited their capacity to influence informed decision support. Others described experiencing great distress when their patient’s motivation to receive a transplant waivered or patients resisted help from family members. Multiple participants described encountering barriers that hindered communication with providers and other stakeholders who could provide guidance on how to engage with their patient, interpret information and manage expectations for waitlist and transplant outcomes.

… he was so frustrated and he kept expressing this. And I’m like what can I do to help? And I just felt so helpless and it’s been so many times where, as a family member, I feel helpless because I think, if I could go on there as a family member and go okay, here’s information

(Female, Group 1)

I will be your advocate. I can step in on this. I can do this for you. And he said, “No”, so gosh. Where does that leave me?

(Female, Group 1)

Conceptual Framework Development:

A Kidney Transplant Candidate Support framework for patient barriers to coping with transplant crisis was previously derived from interviews and focus groups with transplant candidates.¹² In light of our findings, we reviewed theoretical frameworks in family studies to identity a perspective to guide our investigation of how families process a medical stressor. The ABC model of family stress and coping,²⁰ articulated by Rubin Hill to explain how families strove to maintain a perception of well-being proved insightful. More recently the elaborated ABC-X model has been used in research on families coping with medical issues.²¹ The model suits this research as it: (1) focuses on a system including a patient and their support network; (2) describes perceptions of the stressor and resources; and, (3) explains how system members strive to maintain well-being. Our conceptual model defines ESKD, as the crisis (A), interventions such as access to relevant, understandable information as resources (B), and perceptions of treatment options and outcomes (C) to explain how patients, family members, and friends cope with decisions about treatment (X). Applying out findings to our Kidney Transplant Candidate Support framework and the ABC-X coping model, we developed a modified framework presented in Figure 1, to apply new insights drawn from support network members to identify interventions to overcome barriers to effective support.

Figure 1.

Framework for patient and support network barriers to coping with transplant crisis and potential interventions to address them.

Discussion

We found that the friends and family members of kidney transplant candidates feel that the impact of kidney disease affects the whole family, and express a desire to be an integrated and effective part of the care team. Their ability to help their patients is inhibited by several potentially modifiable barriers, including inadequate knowledge, difficulty communicating with patients, need for guidance about how to be involved, and resistance from patients to their involvement due to a feeling of burden.

This study fills an important gap in data on the perspectives and needs of social support networks in order to better support kidney transplant candidates. The ability to integrate friends and family into transplant patient care has implications in its potential to improve patient outcomes. While the medical science of kidney transplantation has advanced, the health gains realized have fallen behind the potential health gains due to the complex interaction of medical science and human behavior. The potential survival and quality of life gains from kidney transplant for the treatment of ESKD have been tempered by suboptimal rates of transplant. Transplant rates can be improved by increasing the proportion of living kidney donor transplants, and improving acceptance of increased infectious risk or high kidney donor profile index kidneys that have been shown to provide benefit for almost all patients with ESKD compared to remaining on dialysis.^22,23 While more difficult to quantify given that referral and listing rates are not tracked, evidence suggests inequities in access to kidney transplant start prior to listing as well, with factors such as gender, race, ethnicity, socioeconomic status, and health literacy all affecting the likelihood that a patient referred for transplant will subsequently get listed and transplanted.^24–26

While transplant providers have justifiably focused on the medical evaluation of kidney transplant candidates, access to the kidney transplant waiting list is heavily dependent on patients’ understanding of their choices²⁷ as well as patient behaviors, such as completing the evaluation process and adhering to complex medical therapies and recommendations.²⁸ Our data from kidney transplant candidates on barriers and facilitators to listing revealed that effective support from friends and family was a key factor in patients’ ability to cope with ESKD, a finding consistent with studies that have found home counseling with friends and family improved rates of living kidney donation.^12,13 Interventions targeting patients’ social support networks have been shown to be effective in a variety of disorders and for increasing rates of living donor transplants.^13,14 While these studies are promising, additional interventions that include social support network members are limited by a lack of data collection directly from these friends and family members, rather than indirectly via patients. By identifying specific barriers and facilitators experienced by kidney transplant candidates’ social support networks, this study informs intervention strategies for engaging friends and family seeking to improve patient outcomes.

Many of the concerns raised by friends and family mirrored those expressed by patients. In our studies as well as others, kidney transplant candidates reported limited understanding of their treatment options and likely outcomes.^12,29 Friends and family also felt overwhelmed by the information, and even those who attended the transplant evaluation with their patient expressed a desire for more educational resources after the initial information session. Barriers to communication exacerbated the knowledge gap for friends and family who were reliant on their patients for all their information. Patients expressed an intense desire not to burden friends and family, while friends and family reported this desire not to burden them as a barrier to effective communication and assistance, causing greater stress and anxiety. Friends and family expressed the same sense of isolation, helplessness and need for guidance, although friends and family’s helplessness was often rooted in a desire to help but not knowing exactly how.

Given the parallel, but unique needs and barriers to support networks, the themes and findings of this study were incorporated into the Transplant Decision Support conceptual model initially developed using data from patients¹² and the ABC-X Model of Family Stress.²¹ The systematic identification of these needs and barriers is an essential first step in developing interventions that are effective in supporting patients and their support networks. At the same time, our findings have relevance to general clinical practice and protocols for initiating and completing the transplant evaluation. The revelation of friends and family members’ eagerness to participate and support their patient creates a need to reevaluate how centers engage patients their support networks during the evaluation and at follow up. Future research should identify which barriers are most amenable to intervention, and evaluate theory based and empirically supported interventions to modify them.

While our study provides new insights directly from social support networks, it has important limitations. Participants were recruited from one geographic region and were predominantly white. Themes from friends and family in other regions with broader racial and ethnic diversity may differ and should be investigated. In addition, participants were more educated and earned greater incomes than the general population. However, the finding that even these more highly educated participants with fewer economic struggles expressed barriers and difficulty getting the help and information they needed only highlights the need to support all patients and social support networks, as those with less education or access to resources likely experience even more barriers than those expressed by our participants. The vast majority of participants were family members, the experiences of friends was not fully characterized. These support network members were also from patients who are listed for transplant, and therefore do not reflect the challenges of living with a kidney transplant. Finally, while qualitative data provides critical information on the range of needs and experiences, it does not provide information on the frequency or prevalence of those experiences.

Conclusion

Friends and family of kidney transplant candidates reported important needs and potentially modifiable barriers to acting as effective members of patients’ care teams. Interventions that systematically target these barriers to effectively incorporate them into care have the potential to greatly improve outcomes in these complex and vulnerable patients.