Table 4 Personal responsibility and psychological burden for patients and families (Theme 3)

Responsibility for becoming a “good candidate”

Patient states that he wants to “prove to everyone” that he can do what is necessary to be a good peritoneal dialysis candidate as well as a transplant candidate. (nutritionist)

Must encourage self-determination and responsibility for performing the suggested dental work to avoid infection before can be activated on transplant list. (dialysis unit nurse)

Admitted that … he had indicated he had stopped smoking (which he had not) [the patient] appeared truly sorry and upset. (dialysis unit nurse)

Being a loner is not a good style for transplant, so the veteran will benefit from learning to reach out & be more inclusive during the phases of transplant (psychiatrist)

The [transplant center] team wants him to be less dependent on his mother and asked that he go to vocational rehab to learn job skills … I encouraged [the patient] to consider volunteering as a start. (transplant coordinator)

Discussed patient’s current lack of compliance with meds, blood sugar readings, etc. Discussed how this continued non-compliance does not make him a good candidate for transplant, because the regimen he needs to maintain post-transplant is much more demanding. (social worker)

Patient has NOT BEEN taking all medications as ordered. Reminded patient of importance of taking medications and that compliance with therapies will be noted by the transplant workup staff and those who will evaluate his ability to work with team for transplant. Patient indicates that he really wants to make this work and promises to make a more concentrated effort. (dialysis unit nurse)

His coping skills, level of family support, and compliance will be tested once he starts dialysis, and we will be able to better assess these concerns at that time. (nephrologist)

Anxiety and psychological distress

Transplant workup was begun … however he and his family have decided that “it’s just too much...”, too many appointments, too much “back and forth”. (transplant coordinator)

Patient and [his wife] were not getting along today. This is the first time this social worker has ever witnessed this ...it is obvious that the pressure and stress of this has affected both patient and [his wife]. (social worker, transplant evaluation note)

It was clear that from a psychological perspective a backup person for [peri-transplant] caregiver was very important for this veteran & his spouse. His spouse was feeling overwhelmed and had panic attacks. (psychiatrist)

Does seem somewhat anxious about all the appointments he has for his transplant work-up … becomes very anxious if there are changes or deviations in the process. (social worker)

[The patient] has a long history of major depression with multiple episodes in the past several years...sudden “crash” 2 weeks prior when learning that his brother would not be able to donate kidney. (psychiatrist)

Veteran primarily expressed feelings of anger; he sees this decision [rejection from the transplant center] as arbitrary made by “some bureaucrats”. (psychiatrist)

He had a history of three arrests, three incarcerations...history of probation & history of parole … [patient] said that he was saddened by his mis-steps & behaviors which results in the arrest/incarceration … He said that he was very sorry for behaving so bad & he said that talking about it was embarrassing for him. (psychiatrist, transplant evaluation note)