We interviewed 16 in-center hemodialysis patients, 14 dialysis staff members and 6 nephrologists (Table 1). The mean (SD) age of patients was 60.1(17) years, 50% were females, 62.5% were blacks and 25% had high school degree or less. This is representative of the HD population in Pittsburgh area (mean age 64 years, 38% females, 41% blacks; data obtained from DCI, 2015). Dialysis staff included 6 nurses, 3 technicians, 2 dietitians, 1 social worker and 2 unit administrators. Nephrologists also represented a diverse group including one third over 50 years of age, 50% female gender and 50% academic nephrologists.
Major themes and subthemes
Theme 1: Knowledge and perceived benefits of exercise: patients and staff view exercise as beneficial: “It gives me more energy…”
As illustrated in Table 2, majority of the participants’ comments reflected a view that a major benefit of exercise was improved overall perception of health and well-being. Physical health benefits such as improving cardiovascular health, energy level, muscular strength and balance emerged as a prominent sub-theme, especially in the patient interviews. Male patients seemed to focus more on the muscular strength benefits and females on cardio-protective benefits. Interestingly, only a few of the patients commented on the mental health benefits, such as reduced depression and stress, and an increased sense of accomplishment. We found that all but one patient (72 yo White female) and surprisingly one staff member (dialysis technician, 28 yo) reported no knowledge of benefits of exercise. Most patients were unaware or underestimated the recommended frequency and/or duration of exercise:
“Probably couldn’t be no more than maybe twice a week” [Interview 10, F, 54yo, Black]
Theme 2: Reported barriers to exercise: dialysis makes exercise challenging: “When I come home from dialysis, I’m a little bit wiped out”
We identified a number of patient- and system-related or logistic factors that are perceived as barriers (Table 3). Fatigue or lack of energy, especially post-dialysis fatigue was universally cited as the biggest barrier to exercise and was described as “drained”, “just don’t feel like doing anything after HD”. Limitations on lifting weights due to fear of injuring the fistula, inability to do water exercises due to dialysis catheter and time constraints due to dialysis were other major dialysis-related barriers. Several participants commented on the poor overall health and comorbidities such as arthritis, amputations, leg weakness and blindness as common barriers. Fear of falling, lack of counselling by staff and lack of suitable exercise options were some of the other reported barriers.
As with adopting any lifestyle modification, lack of motivation is one of the biggest challenges – and patients, staff and nephrologists readily recognized this. Patients reported that dealing with physical and mental challenges of having a chronic illness and being on dialysis made exercise a low priority for them. Providers felt most patients lacked the motivation to take care of their health and were thus not likely to care about exercising.
Theme 3: Reported barriers to intra-dialytic exercise: intra-dialytic exercise should be safe without disrupting usual care: “None of us want to stay there any longer than we have to”
We identified several barriers related to type, safety and feasibility of intra-dialytic exercise (Table 4). As expected, safety concerns regarding blood pressure stability, limitations due to inability to use the access arm, fear of needle dislodgement and infiltration and cramps due to exercise were commonly reported barriers. Only a few patients stated that exercising in front of others was a significant barrier. Several participants talked about limitations related to the ease of use, cost, and storage of exercise equipment. Some of them had prior experience using a stationary pedaling bike during HD and offered reasons for poor adherence - patients felt that the bike was boring, staff felt that it added to their workload. All participants felt that extensive staff involvement in any intra-dialytic exercise program would be impractical. An interesting barrier that emerged was patients’ resistance to changing the routine of dialysis. Although patients described situational reasons for this (e.g., extending time spent at the dialysis center), providers viewed resistance in terms of patients’ personal characteristics, describing some, especially long-term HD patients as “strong-willed”, and introducing any change to dialysis routine as being “an uphill battle”.
Theme 4: Motivators and facilitators for exercise: motivation for exercise comes from within and from the encouragement of others: “I’m 100% for exercise, I know first-hand that it is beneficial”
A number of patients expressed self-motivation to exercise, arising from either experiencing positive benefits or from recognition of loss of physical fitness after starting dialysis (Table 5). Patients who had accepted dialysis as a lifestyle change seemed to overcome the psychosocial challenges of being more physically active. Participants also identified health incentives and achieving health goals as important motivators to exercise. We also identified a strong trusting relationship of patients with their doctors (primary care and nephrologists) and dialysis staff, and this was a key motivating factor, along with encouragement from family, friends and other dialysis patients. Although most nephrologists offered a number of thoughts on what would motivate patients for an intra-dialytic exercise program (as mentioned below), majority of them did not comment on motivators for overall physical activity.
Theme 5: Recommendations for intra-dialytic exercise: “It would be good for us mentally to have something else to do there while we are sitting in those chairs”
Participants’ thoughts on why, how and what kind of intra-dialytic exercise program they believed might work are shown in Table 6. A recurring theme was the convenience in terms of saving travel and precious non-dialysis time. Moreover, by adding distraction to the mundane routine of dialysis, participants felt that it would make the time go faster and add value to the dialysis time. They reiterated that since the dialysis unit is a social environment and if a culture of exercise is introduced, it is likely to be well accepted by the patients. However, an individualized engaging program with prior testing of individual’s capabilities was important to the patients. A dialysis unit administrator described his experience with a pilot group physical therapy program in his unit involving an in-center physical therapist:
“it was well tolerated, it was well accepted … was extremely positive from patients. The anecdotal patients’ feedback was overwhelming, not just one or two, essentially all patients seemed to very much appreciate the attention, the diversion…. the patient response one after another after another totally was “This is fun, I like it, I love the person, I look forward to it”. From our measurements of patient perception, participation, and their feedback, it was a wonderful success.” [Interview 30, 54 yo, Administrator]
Despite its initial success, the program failed due to lack of resources to support the in-center exercise staff, thus again emphasizing the need for a less resource intensive program.
Staff and nephrologists suggested offering patients incentives such as prizes or raffles as a way to motivate them to participate in exercise. Interestingly many patients identified positive health benefits and the ability to do more as internal motivators for engaging in exercise. “I feel good because I’ve done it. And that’s the only payment you can get from it [Interview 12, male, 75 yo, white].
Theme 6: Dialysis staff attitude towards promoting exercise: “I know it can be done and that it can be tolerated”
Since dialysis staff - the nurses, technicians, social workers, dietitians and administrators - are the key front line staff involved in the successful implementation of any intra-dialytic exercise program, we elicited their attitude and willingness to support such a program and the extent of their participation that they thought would be feasible. Majority of staff members believed that intra-dialytic exercise was safe and feasible:
“There’s clearly a significant population of patients who could participate in some kind of planned exercise during a dialysis treatment, I know that to be possible. I know it can be done and that it can be tolerated” [Interview 30, 54 yo, Administrator]
Although most of the staff members were supportive of an intra-dialytic exercise program, they strongly felt that their direct responsibility should be limited to patient encouragement, motivation and monitoring. Staff felt that a program that required minimal staff assistance could be easily accommodated and would not add to their workload.
“I don’t see it [encouraging exercising] being a huge issue …. monthly education with them on that [exercise] like I do with the diet and you know adding a little bit of work but I don’t think it would cumbersome.” [Interview 19, 35 yo, dietitian]
“I don’t know if that would, you know, interfere with us making sure that they’re okay ‘cause we do every half hour check-ups basically we’re making our rounds to every patient, making sure that they’re okay, checking all of their vitals.…….. I wouldn’t see it [exercise during dialysis] being that much of a hassle.” [Interview 24, 28 yo, technician]