Seki A. Balogun, MBBS, AGSF1, Natalie B. May, PhD1, Meagan Briley2, Allison Bosch2, Isabelle Duerr2, Justine E. Owens, PhD3, Emaad Abdel Rahman, MD, PhD4
1Division of General Medicine/Geriatrics, University of Virginia Health System, Charlottesville, VA, USA
2University of Virginia School of Medicine, Charlottesville, VA, USA
3Department of Medicine, University of Virginia, Charlottesville, VA, USA
4Division of Nephrology, University of Virginia Health System, Charlottesville, VA, USA
DOI: https://doi.org/10.5770/cgj.22.342
ABSTRACT
Background
Little is known about the perceptions of older adults with end-stage kidney disease (ESKD) on chronic hemodialysis (HD) even though this could potentially influence how treatment is received. This study explores the perceptions of older adults with ESKD on HD, specifically their decision to initiate HD, preconceptions and expectations of HD, perceived difficulties with HD, and coping strategies.
Design
Cross–sectional
Setting
Outpatient chronic dialysis units
Participants
Older adults with ESKD on HD
Intervention
Open-ended interviews were conducted with 15 participants. Inclusion criteria were age 60 years and older, HD duration of at least three months, and ability to consent and participate in the interview process.
Results
We report on four identified domains: decision to initiate HD; preconceptions and expectations of HD; drawback of HD; and coping strategies. All participants were reluctant to initiate HD, but made the decision on advice from their physicians for varying reasons. Trust in physicians’ opinions also played a role for some. Some participants had positive preconceptions of HD, while a few had negative preconceptions or unrealistic expectations. Even though the majority of participants identified several difficulties with being on HD, they also had positive coping strategies, and the majority indicated that they would make the same decision to initiate HD.
Conclusion
As clinicians are turning more to patient-centered medicine, understanding patients’ perceptions of HD is of crucial importance. Our study highlights the importance of improving pre-hemodialysis education to ensure that patients’ expectations are realistic, as well as identifying individualized coping strategies by patients.
Key words: older adults, perceptions, end-stage kidney disease, hemodialysis
Prevalence of end-stage kidney disease (ESKD) has steadily increased in the last three decades with over 700,000 prevalent cases in 2015, an increase of 80% since 2000.(1) According to the 2017 United States Renal Data System report, approximately 40% of all patients with ESKD requiring renal replacement therapy (RRT) are 65 years and older.(1) RRT modalities utilized in older adults are hemodialysis (HD), peritoneal dialysis (PD) and, to a lesser extent, kidney transplantation. A recent systematic review(2) of studies on adults age 65 years and older with ESKD requiring RRT revealed that there are very limited data on their perceptions of RRT, with highly variable opinions ranging from very high expectations that hemodialysis would help make them feel better and maintain their independence, to feeling that it was the only way to stay alive as they saw no other alternatives. Also, in a study by Stringer and Baharani,(3) 55% of older adults with ESKD on starting hemodialysis had a change in the perception of the treatment modality, finding it unacceptable. Even less is known about health satisfaction in these older adults, with the few extant studies revealing widely varying views.(4,5)
It is important for clinicians to know and understand the perceptions of older adults on RRT as this could potentially affect adherence to RRT, and also influence how RRT is received and tolerated. Ultimately, clinical outcomes of older adults on RRT may be impacted by their perceptions and satisfaction with these modalities.
In this qualitative study, we explore the perceptions of older adults with ESKD on HD, specifically their decision to initiate HD, preconceptions and expectations of HD, perceived difficulties with HD, and coping strategies.
We conducted preliminary open-ended interviews with 15 ESKD patients who were receiving chronic hemodialysis (HD) in two local outpatient chronic dialysis units. Inclusion criteria for participants were age 60 years and older, ability to consent for participation in the study and interview process, and duration of at least three months on HD. The university institutional review board for social and behavioral sciences approved the study. A total of 16 participants were approached for inclusion in the study, of which 15 agreed to participate and one declined. Four investigators (NM, MB, AB, and ID) conducted the interviews using a semi-structured interview guide (see Appendix A) to ensure uniformity in the questions asked. The interview guide was developed based on findings in a systematic review by Balogun et al.(2) on perceptions of older adults with end-stage kidney disease. Interviews were conducted in person while participants were receiving hemodialysis in the chronic dialysis units. The unit nurses helped the interviewers identify patients who met the inclusion criteria and introduced the researchers. Each interview was audio-recorded and lasted 30–60 minutes. The interviewers had no prior relationship with the participants or knowledge of their medical history. MB transcribed all interview recordings verbatim, and interviewers reviewed the transcripts for accuracy. MB and NM conducted grounded theory analysis of the data, which is a well-established method of conducting qualitative research focusing on creating conceptual frameworks through developing analytic categories directly based on the data.(6) Initial domains based on the interview protocol topics were developed. Both researchers then generated subdomains independently, compared their analyses, and created a mutually agreed upon set of subdomains. They repeated this process until a final set of domains and subdomains emerged.
Participants were 63–92 years old (mean: 75.1 years) and had been on chronic hemodialysis for a mean of 4.5 years (range: 6 months to 14 years). Eight of 15 (53%) participants were female. The majority (53%) of the participants were African American, while 47% were Caucasian (Table 1). We report on four main identified domains: decision to initiate HD; preconceptions and expectations of HD; drawback of HD; and coping strategies.
TABLE 1 Demography of participants
In Table 2, we summarize the interview data regarding participants’ decisions to start HD. All of the participants were reluctant to go on HD, but made the decision on advice from their physicians for varying reasons. Some voiced that they felt this was the only option to prolong their lives. Others made the decision to avoid a painful death, to manage symptoms, or to appease the wishes of family members. Most patients started HD when it became clear that there was no medical alternative and that, without treatment, they might die: “It’s pretty much dialysis or nothing”. One participant voiced: “I thought it [kidney disease] was a death sentence,” as an explanation for his decision to start on HD. A few participants commenced HD for symptom control or as medical emergency during inpatient hospitalization: “I just was sick every day. Throwing up and stuff.” These participants felt they had little choice in the decision to start hemodialysis and that the decision was made for them by their medical provider. One participant did not believe she required HD because she was asymptomatic:
TABLE 2 Decision to initiate hemodialysis
“I woke up in the hospital one morning and they said I was going to be on dialysis. I said, ‘Ain’t nothing wrong with my kidneys ‘cause I still go to the bathroom, I still urinate.”
Some participants made the decision to initiate HD because they trusted their physicians’ opinions. Longer term doctor-patient relationships and the accompanying higher trust levels typically made patients more comfortable with their decision to begin treatment. All of the participants admitted that their family or friends influenced their decision to go on hemodialysis. Some cited reasons include wanting to see their grandchildren grow up or that they were caregivers for spouses or children who were dependent upon them for their own survival:
“That’s right. You’ve got to understand, I am a single parent and I’m all they have. So whatever it is they would like for me to do to stay with them, I’m going to do that. Whatever it is God would like for me to do to stay with them, I will do that. It has nothing to do with a human being.”
For some who were reluctant to start HD, the insistence and support of immediate family played a key role in overcoming their initial resistance. “I’m doing what [my family] wanted,” and “because they wanted me here longer”, reflect predominant themes in the decision-making process. Some participants also relied on their religious faith in making a decision.
A few felt they had adequate information prior to commencing hemodialysis. While majority did not feel they received adequate information prior to starting HD, they however acknowledged that they became more knowledgeable afterwards. Some participants felt they had received inaccurate (or misleading) information from their providers. In addition to information from their doctors and health educators, a few participants received information from health brochures and the media. However, participants more often relied on their family and friends’ experiences with kidney disease for information in their decision-making process. The tragic death of a sister-in-law who refused to continue dialysis treatments served as a deciding factor for one participant:
“My sister-in-law … found out she was going on dialysis and she was on there maybe two or three months. And she said, ‘No, not going to do it anymore.’ And she swole up and literally drown in the fluid around her heart … See, I had already seen that and I said, ‘No way, José.’”
Participants placed great value on information that came from patients who were already receiving HD treatments: “Well, you talk to the people that are going through it and you know it’s not going to be the blessing that everybody thinks it is, but…” said one who made the decision to begin treatment based on these conversations. Some participants also felt that other HD patients were likely to provide an accurate account of their experience on HD. Some participants admitted that the accuracy of this real-world information is difficult to determine, and one participant likened it to trying to figure out what’s wrong with a car in need of repair: “You can walk down the street, and before you can see the end, you’ll have about 20 answers.”
Follow-up with doctors and health educators to sort through the wide array and quality of information was considered important. All participants, except two, stated that they would make the same decision to start on hemodialysis if they were given the choice again, and their reasons reflected their initial decisions to begin HD. Relieving symptoms, wanting to make family members happy, and prolonging life—”I love to live … I love living”—typically played key roles in their decision. A few indicated that they wish they’d made different lifestyle choices in order to avoid starting on hemodialysis altogether. One patient reflected on her family’s reaction if she should decide to stop treatments:
“I usually do what I want to do. If I say, ‘I don’t want to do it anymore,’ I think they’d have a cow, but it would be my decision.”
Participants’ preconceptions and expectations of HD fell into three categories: negative, positive, and neutral, as summarized in Table 3. Few participants had negative preconceptions of HD prior to starting on it. They generally formed these opinions from either different media sources, health-care providers or, more often, the negative experiences of others. Hemodialysis “has a bad reputation” said one patient who was disturbed by a newspaper article he had read. Others related stories of friends, family, or people they had heard of who did not fare well on HD. “Yeah. All my friends were telling me— Man, I wouldn’t take [hemodialysis] … you can die from it.” Not surprisingly, these stories lowered expectations of positive outcomes for patients who were about to begin treatments.
TABLE 3 Preconceptions and expectations of hemodialysis in older adults with ESKD
Some participants had positive preconceptions of HD and felt hemodialysis would make them feel better: “… because they said I’d feel great and after you get doing it (hemodialysis) for a while, you do feel great. Better, not great.” Two participants hoped that hemodialysis would cure their kidney disease. One woman said she had hoped “that in a week or two my kidneys would start working again.”
The preconceptions of majority of participants were influenced by the experience of family members or friends on hemodialysis, patient education programs or through discussions with their physicians. Only two participants had no preconceived ideas about HD or its effects, and neither had any exposure to others on HD prior to starting treatment.
Participants identified several difficulties with being on hemodialysis, as summarized in Table 4. The majority of participants felt that hemodialysis was too time consuming and significantly limited their independence. Other difficulties cited were the limited activities to keep them occupied while on hemodialysis, lack of energy, dietary restrictions, difficulty with the AV fistula graft, and poor relationship with the HD team. One participant, who was not sure why she required HD, also did not feel that it was beneficial:
TABLE 4 Drawback of hemodialysis
“To me, it (hemodialysis) feels the same to me. They say it’s working, but I don’t see how…. I ain’t fighting to die … just tired of going up here getting treatment. Ain’t doing no good.”
We identified four main positive coping strategies in our participants: reliance on family and friends; reliance on spirituality; self-care; and engaging in activities that foster well-being (see Table 5). Participants also described specific strategies for coping while getting HD treatments including socializing with staff and other patients, watching TV, staying calm or sleeping.
TABLE 5 Positive coping strategies of older ESKD adults on hemodialysis
Some participants rely on family and friends, both for the supportive relationships they offer and for their willingness to help with chores, transportation, and more. Although most patients strived to maintain their independence, they rely on family and friends to help with instrumental activities of daily living such as cooking, mowing the grass, shoveling snow, grocery shopping, and providing transportation to treatments, doctor appointments, and physical therapy sessions. Relationships with family and friends were sustaining, both in a general way, but also during HD treatments. In addition to providing encouragement to continue HD, some family members accompanied patients to HD treatments and education sessions or showed support in other ways:
“I came in heavy today, but my friend brought me some lemon pound cake last night. Yesterday evening she came for a visit, and it was so good.”
Some participants found joy in having close relationships with grandchildren. While others felt that their faith or religion played an important role in their ability to cope with their medical diagnosis and with being on hemodialysis:
“Then one doctor came in and told me that I was going to, uh, die in a few weeks. And uh … that was still a bit shocking. Then after that I started getting happy. I said, “I wonder when is this going to happen?”
“… I wouldn’t call myself religious, but I believe in God and Heaven, so I want to be with my lord. But I started feeling better after dialysis, and I just couldn’t believe it.”
One participant arranged her dialysis schedule so that she could continue to with her church activities. Engaging in activities that foster well-being and self-care were other positive coping strategies for participants. Examples of such activities include exercises, playing or listening to music, adopting a pet, occasional ‘cheating’ on dietary restrictions, and maintaining as normal a routine as possible. Participants also shared ways that they lessen the pain and boredom of dialysis treatments. Most watched television or slept during their treatments, but others enjoyed socializing with the other patients and staff. One participant who resides in a long-term care facility looked forward to “getting out of the nursing home” and meeting new people at the hemodialysis center. She also indicated that group activities and exercise classes in the nursing facility play a key role in her ability to cope with her medical condition. One patient talked about how staying calm during treatments helped him, and another said his interest in medicine made the dialysis treatments bearable.
Patients with ESKD receiving HD treatments face many challenges, including those directly related to HD treatments such as muscle pain and cramping, gastrointestinal distress, problems with fistula/graft, inactivity, and boredom during treatments.(7,8) In addition, they experience symptoms related to the disease process itself, such as fluid overload, fatigue, sleep disturbance, depressed mood, and decrease in sexual libido.(9,10) Furthermore, they must also cope with the amount of time HD treatments require which typically is three treatments each week, with each treatment lasting between 3–4 hours in duration. With transportation to and from the outpatient dialysis units and the resultant fatigue after each HD treatment, patients usually tend to devote three full days a week to their ESKD care. With all of these factors, one would expect a significant negative impact on ESKD patients, particularly in older adults who also have other medical problems and less physiologic reserve. We sought to learn about older ESKD patients’ perceptions of HD and how they coped with threats to their independence and wellbeing. While all participants commenced hemodialysis on advice from their physician, they did so for varying reasons including viewing HD as the only option to prolong their life, for symptom control or due to influence from family or friends. This is consistent with findings from another study of predialysis ESKD older adults in which they tended to delay making a decision on HD initiation until they were either symptomatic, facing a life-threatening clinical situation or had paternalistic guidance from their physician.(11)
High levels of trust in physicians’ opinion also played a major role for some participants and were largely present in those who had longer term doctor–patient relationships. A few participants who commenced HD in the hospital as an emergency procedure felt they had no control in the decision-making, and only a quarter of our participants felt that they had adequate information prior to commencing HD. However, the majority of the participants had positive or neutral preconceptions of HD which were largely influenced by the experience of family members or friends on hemodialysis, patient education programs or through discussions with their physicians. The negative preconceptions of a few participants were based on information from different media sources, health-care providers or, more often, the negative experiences of others on HD. Also, very few participants had unrealistic expectations that HD would cure their kidney disease.
The positive coping strategies utilized by these participants were very revealing and likely explain their ability to overcome some of the physical and psychosocial difficulties related to HD. Their reliance on faith or religion, family and friends were particularly notable, but not surprising, as previous studies have found that many patients with chronic or serious diseases depend on their religious faith or spiritualty as a way to cope with their medical conditions.(12)
Understanding patient perceptions and factors that may affect these perceptions is of utmost importance as they can affect patients’ adaptability to their illness and well-being.(13) In addition, this knowledge helps to better inform clinicians on how best to meet the needs of this vulnerable subset of the population.
While we recognize that several limitations of our qualitative pilot study including small participant sample size, lack of geographic representation make it difficult to draw generalizable conclusions in this patient population. In addition, our data were based on retrospective recollection of older adults already on hemodialysis and who may have very different perceptions from those with pre-dialysis ESKD. This underscores the need for further studies to examine these factors in a more representative robust patient sample.
Furthermore, patients’ perceptions of various therapeutic modalities of RRT are of crucial importance in patient-centered clinical care of this subset of the population. Our study also underscores the importance of appropriate patient education prior to HD to better align patients’ perceptions and expectations with reality, as well as identifying individualized patient coping strategies with the ultimate aim of better personalized care.
The authors gratefully acknowledge funding from the University of Virginia Medical Student Summer Research Program.
The authors declare that no conflicts of interest exist.
Thank you for agreeing to participate in this interview about your experience with kidney disease and treatment. I am especially interested in the story of your kidney disease and how the dialysis (RRT, “this treatment”) experience has been for you. If you’re ready, let’s get started.
Please tell me about your overall health.
What major diagnoses have you had?
How do you feel overall?
Would you say that you are satisfied with your current health?
Could you feel better, do you think?
If yes, what do you think would help you feel better?
Next, I would like for you to tell me the “story” of your kidney disease.
When and how were you diagnosed?
How did you know that you were sick with kidney disease?
Once your doctor told you that you had kidney disease, what happened next?
How did you react? Emotions. Reaction of family and friends.
What treatment did you receive? Did you receive it right away?
How has that treatment changed over time?
How long have you been on dialysis?
Now I’d like to learn more about your decision to go on dialysis (renal replacement therapy).
How did you decide that this was the right therapy for you?
Doctor’s influence
Family member’s influence
Friends’ influence and knowing others who are on RRT
Other reasons
Did you feel that you had enough help and information to make the right decision for you?
What did you hope would be the result of dialysis?
Feel better
Save my life
Cure me (?)
Now let’s talk about the treatment (dialysis, RRT, “this treatment) itself and how it’s affecting you.
Do you think this treatment is working? Why or why not?
How does this treatment make you feel?
Prior to coming for treatment
During treatment
After treatment
Do you ever have any side effects?
i. If yes, what are they?
Fatigue
Nausea/vomiting
Depressed mood
Other
v. How often do you get these side effects?
vi. How severe are they?
vii. Do you think these side effects are normal? To be expected?
Is there anything about the treatment that has surprised you?
Has the treatment improved your functional status? Are you able to do more things or fewer things now than you were before the treatment? Or is it about the same? Please tell me more about that.
Has the treatment had a positive or negative impact on your quality of life?
Function
Relationships
Finances
Independence
If you could do it all over again, would you make the same decision to receive this treatment?
Could you describe to me what your dialysis days are like? Start when you get up in the morning and walk me through your day.
If there were something (anything!) we could change about your dialysis experience, what would that be?
How would you describe your relationship with your kidney doctors and nurses?
Are there things that you would like them to continue to do?
Are there things that you wish they would do differently?
Do you have access to all the services that you need?
If yes, what services are you using?
If not, what services would be helpful to you?
And finally, if you had a friend or relative, or even a total stranger, who had the same diagnosis as yours, what would you tell them about the decision to have dialysis treatment?
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10 Abdel-Rahman EM, Balogun SA, Kepple A, et al. Beck Depression Inventory and survival in elderly hemodialysis patients. Nephrol Dial Transpl. 2011;26(6):2064–65.
11 Lovell S, Walker RJ, Schollum JBW, et al. To dialyse or delay: a qualitative study of older New Zealanders’ perceptions and experiences of decision-making, with stage 5 chronic kidney disease. BMJ Open. 2017;7(3):e014781.
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13 Knowles S, Swan L, Salzberg M, et al. Exploring the relationships between health status, illness perceptions, coping strategies and psychological morbidity in a chronic kidney disease cohort. Am J Med Sci. 2014;348(4):271–76.
*Accepted for Poster presentation at the Society of General Internal Medicine Annual Meeting, April 2018. ( Return to Text )
Canadian Geriatrics Journal, Vol. 22, No. 2, June 2019