Understanding Barriers to Home Dialysis Within an Integrated Health Care System: A National Qualitative Study Within the Department of Veterans Affairs

To the Editor:

Despite federal initiatives to promote peritoneal dialysis (PD), uptake is limited within the Department of Veterans Affairs (VA).^1,2 Understanding how barriers influence PD use within VA can help design implementation strategies tailored to the needs of VA clinicians and Veterans.³ In a recent national survey (the IM-HOME study), we identified 6 major barriers to home dialysis: fear, limited space, inadequate home-based support, insufficient patient education, limited reimbursement for home-based support, and lack of experienced staff.⁴ To what extent these barriers influence PD uptake within VA is unknown. In this letter, we describe a qualitative study that employs a structured visual aid to understand how VA clinicians, Veterans, and care partners perceive major barriers to PD.

We conducted semistructured interviews with Veterans with experience in PD, their care partners, and their VA clinicians at 9 VA Medical Centers. We purposively sampled participants from sites with lower and higher proportions of PD use (range: 3% to 40%; Item S1). During each interview, we shared a visual aid summarizing the six barriers identified in the IM-HOME study (Fig 1) to validate whether these barriers influence the VA context (as a modified member-checking approach).⁵ We asked participants to describe how these barriers resonated with their experiences and to identify elements they felt were missing. Interviews were conducted in-person or virtually, audio-recorded, transcribed, and deidentified. Transcripts were coded deductively using the categories identified in the IM HOME study.

Figure 1.

Visual aid outlining the 6 major barriers to home dialysis from the IM-HOME study. This figure illustrates the 6 major barriers to home dialysis that were derived from a national survey study (the IM-HOME study). We shared this visual aid during semistructured interviews with VA clinicians, Veterans, and care partners to explore how these barriers influence home dialysis use within VA. This visual aid was shared as a picture during in-person or video interviews. When interviews were conducted by audio or over the phone only, we described these six barriers verbally to solicit participant feedback. Abbreviations: IM-HOME, the Identifying Major Barriers to Home Dialysis study; VA, Veterans Affairs.

We interviewed 82 participants (50 clinicians and 32 Veterans/care partners). Participants generally agreed with the IM-HOME barriers (Table 1). For example, Veterans and care partners were fearful about initiating PD, especially when considering physical and mental comorbid conditions or nuances about their home environment (e.g., pets, stairs, privacy). Clinicians largely echoed these concerns, linking patient fear to perceived safety, infection risk, and Veteran burnout. All groups acknowledged space limitations as a barrier, but some identified strategies to overcome space (eg, scheduling more frequent deliveries; rearranging the home).

Table 1.

Example Quotes from Veterans, Care Partners, PD Nurses, and Clinicians Describing Agreement and Disagreement With the IM-HOME Barriers.

Barriers (IM-HOME)	Agreement	Disagreement
Scared to receive dialysis at home	“I would say, scared to do dialysis at home, that was definitely, in the beginning, a fear of mine […] of missing a step and totally messing everything up.” (Care Partner, 1_2_07) “Well, I absolutely agree. I talked to you earlier about the fear of doing it initially, even though I had been trained very well by my PD nurse, even though we had gone over it several times. There is a fear of taking this machine and these solutions and working them by yourself.” (Veteran, 1_1_03) “Scared to do dialysis at home is very real […] it’s a pretty alien concept […] getting a piece of plastic stuck in your belly and exchanging fluid.” (Nephrologist, 1_6_02) “I think they all have a sense of that […] they all have that first day like, okay, you sure I’m good?” (PD Nurse, 2_3_01) “Some people […] don’t feel comfortable to do [PD] by [them]self. Because […] it’s too much work […] or not safe enough.” (PD Nurse, 1_3_01)	“I would agree with all of them. The only one I would say less of for myself is the fear of doing the treatment at home, I think, was the very first thing that was said. [. . .] But, like I said, I think I took this on a little bit easier, especially having to go through the transplant once before that already …” (Veteran, 2_1_02)
Little space for dialysis machine and supplies	“Little space. I mean, we’re in [densely populated urban city], and I'm in a small flat, small two-bedroom, and that could be a problem. My wife, she’s rearranged everything so I have adequate space for the boxes of solution and equipment.” (Veteran, 5_1_02) “We had to make the decision to kind of lose a room in the house […] because this is what it’s going to be.” (Care Partner, 1_2_07) “Some people […] can’t even afford to keep their stuff at home for the whole month […] delivery has to be biweekly.” (PD Nurse, 1_3_01) “They deliver [supplies every] two weeks to a month […]. If you don’t have the space, […] that could take you off of PD immediately.” (Veteran, 1_1_03) “Storage space […] lifting the bags[…] for some patients that was the dealbreaker.” (Nephrologist, 1_6_02)	“In terms of space for dialysis machines and supplies, that hasn't been as much of an issue for my Veterans. I have […] two patients who live in trailers, and then they managed to find a way. We're sort of kind of—we don't use that as—we try to do our best to come up with ways for them to work around the limitations they have.” (Nephrologist and Medical Director, 4_4_01) “[There’s] not a huge space issue for a lot of our patients. I mean, are some of the rooms maybe a little bit tighter with adding tables for solutions? Yes, but nothing that wasn’t ever doable, or you’re not squeezing into a tight spot and trying to set up, or anywhere unsafe.” (PD Nurse, 2_3_01)
Lack of support/assistance at home	“I think lack of support and assistance at home is the biggest one that I would say on the patient side that I see in a very broad sense, not just having another person, which some people need. But, yeah, it’s often another person really because I think a lot of our patients… I can’t expect them either to have the cognitive or the manual skills to do this for themselves. And so, you do need that other person.” (Nephrologist, 5_6_01) “I have patients on PD with no caregivers […] and others with full assistance. It makes a big difference.” (Nephrologist, 1_6_01)	“With us and [PD Nurse], that was not even in the vocabulary. You’re gonna get support with her. So, I don’t know who they [the IM-HOME survey participants] were going to. I don’t know who they were going to, but if it was [PD Nurse], you are gonna get support.” (Care Partner, 5_2_03) “I'd say, the third one, lack of support or assistance at home, we have not experienced that. We have really good support.” (Care partner, 1_2_07)
Poor patient education, before and after starting dialysis	“Teaching a geriatric population is much harder […] sometimes I thought I explained it clearly, and I find out later they didn’t understand.” (Nephrologist, 1_6_01) “Some people […] they think, oh, this is totally different than what we heard about. We should be crystal clear [about how to do PD…] this is their life.” (PD Nurse, 1_3_01) “I would agree with the poor patient education […] people don’t understand their medications or dietary restrictions […] there's a gap in patient education everywhere” (Executive leadership, 2_9_01) “If we don’t explain things clearly […] that's their life. We should tell them honestly the expectations and workload” (Nurse Practitioner, 4_10_02)	“The VA’s been very patient with us […] they said, we’re not stopping until you feel comfortable.” (Care Partner, 1_2_07) “Even though I had been trained very well by my PD nurse […] it’s still a scary thing.” (Veteran, 1_1_03)
Lack of reimbursable mechanisms to support assistance at home, mental health, and kidney disease education	“The VA, to my knowledge, does not pay for someone to do your PD for you” (Social Worker, 1_7_01)	“Reimbursable mechanisms aren’t as important […] it’s more the lack of staff and outpatient-based resources” (Nephrologist and Section Chief, 1_5_01) “We’re told no [for staff positions], due to financial whatever[…] reimbursement is less of an issue, but still affects staffing.” (Nephrologist and Medical Director, 1_4_01)
Lack of experienced staff to train patients and manage complications	“We’ve got one nurse and that’s it[…] staffing is a very fraught issue that continues to be a challenge” (Social Worker, 2_7_01) “When we first opened the PD program […] it was one nurse 24/7, 7 days a week for months” (Nurse Practitioner, 4_10_02) “If you have only one PD nurse in the whole hospital […] it is difficult. We need more staff […] to train and monitor.” (PD Nurse, 1_3_01)	“I'm a little surprised at that [barrier], as well, because my understanding is there's a lot of incentive to have a home program in general. From a financial standpoint, and from a staffing standpoint, there should be a push to doing more home dialysis, if possible.” (Nephrologist and Medical Director, 4_4_01)

Abbreviations: IM-HOME, the Identifying Major Barriers to Home Dialysis study; PD, peritoneal dialysis; VA, Veterans Affairs.

There were some instances in which Veterans and clinicians had different perspectives on IM-HOME barriers, such as education and home-based support. Several clinicians characterized gaps in patient education, particularly for the “geriatric population” within VA. However, Veterans and care partners generally expressed strong satisfaction with education and training from PD nurses. Clinicians perceived inadequate home-based support as a common reason for not offering PD, particularly when Veterans had functional limitations and/or lived alone. In contrast, most Veterans in the study did not identify lack of home-based support as a significant barrier, although we predominantly interviewed Veterans who had succeeded in starting PD.

Participants also described barriers unique to VA. For example, Veterans and clinicians perceived VA as caring for a population with a higher burden of comorbid conditions and functional impairment, including post-traumatic stress disorder, depression, and frailty, which could limit access to PD if unaddressed. Clinicians described the logistical challenges of ensuring Veterans are engaged in mental health services. Clinicians offered examples of patients who were motivated and capable, but lacked the strength or dexterity to manage PD. Additionally, Veterans described difficulty coordinating care across VA and non-VA clinical settings. Clinicians referenced greater difficulty securing institutional support for staffing and space for PD compared with hemodialysis.

Finally, although we interviewed participants from nine sites with varying PD use, we did not identify variations in themes related to the IM-HOME barriers. Instead, we identified facilitators that were common across sites. Veterans greatly valued the collaborative, long-term relationship with their PD clinicians. Those who received most or all of their care within VA expressed appreciation for the integrated nature of the VA system, including having their records and clinicians all within VA.

Our study has limitations. First, the majority of Veterans that we interviewed were receiving or had previously received PD (ie, we identified very few Veterans who were earlier in the decision-making process about whether to pursue PD). This may limit the transferability of our findings, and may explain some of the discrepant findings we identified around Veteran and VA clinician perspectives. Second, given our goal of eliciting the perspectives and experiences related to barriers of PD within VA, we used semistructured interviews rather than a standardized survey. This approach allowed us to gain a richer perspective of barriers to PD, but it also limits our ability to quantify the frequency of particular barriers within this population.

In summary, we used a structured visual aid to validate the idea that the IM-HOME major barriers broadly influence PD use within VA settings, with some caveats. Although the 6 IM-HOME barriers resonated with our study participants, our evaluation showed that implementation strategies to increase VA PD use should also address VA-specific considerations, including frailty, mental health, communication gaps, and care coordination issues. This study illustrates how qualitative inquiry can be used to adapt data from one study population to enhance our understanding of barriers within another population, such as Veterans.

Supplementary Material

Supplementary File (PDF)

Item S1