Original Research Article

Chronic Illness
1–13
Negotiating treatment and © The Author(s) 2022
Article reuse guidelines:
managing expectations in sagepub.com/journals-permissions
DOI: 10.1177/17423953221124312
chronic kidney disease: A journals.sagepub.com/home/chi

qualitative study in Argentina

Javier E Roberti1,2 , Juan P Alonso1,2

and Carl R May3

Abstract
Objectives: To describe how patients with CKD negotiated assigned responsibilities in the man-
agement of their disease, resulting in potential relational nonadherence.
Methods: Qualitative study performed in two healthcare facilities in Buenos Aires, Argentina,
including 50 patients and 14 healthcare providers. We conducted semistructured interviews
which were analysed using a frame of reference with concepts of Burden of Treatment and
Cognitive Authority theories.
Findings: Adherence to treatment defined “good patients”. Patients needed to negotiate starting
treatment, its modality and dialysis schedule, although most patients felt they did not participate in
the decision process and that providers did not acknowledge implications of these decisions on
their routine. Some patients skipped dialysis if concerns were not attended. Regularly, patients
negotiated frequency of visits, doses, dietary restrictions and redefined relationships with their
support networks, sometimes with devasting effects. As a result of overwhelming uncertainty
some patients refused enrolling into a transplant program. When the frequency of complications
increased, patients considered abandoning dialysis.
Conclusion: When patients perceived demands were excessive or conflicting, they entered
into negotiations. Relationally induced nonadherence may arise when professionals do not or
cannot enter into negotiations over patients’ beliefs or knowledge about what is possible for
them to do.

1
CIESP/CONICET, Buenos Aires, Argentina
2
IECS, Buenos Aires, Argentina
3
London School of Hygiene and Tropical Medicine, London, UK
Corresponding author:
Javier Roberti, Institute for Clinical Effectiveness and Health Policy, Dr Emilio Ravignani 2024 (C1414CPV), Buenos Aires,
Argentina
Email: javierroberti@gmail.com
2 Chronic Illness 0(0)

Keywords
Chronic kidney disease, burden of treatment, adherence, cognitive authority, negotiations
Received 30 November 2021; accepted 28 July 2022

Introduction in self-care is likely to occur.11 If the health

system does not negotiate with patients over
Epidemiological and demographic changes in what they and carers believe is needed to
recent decades have resulted in an increase in
manage their condition, relationally induced
the number of people with chronic diseases,1 nonadherence may hamper treatment.12
and a shift of care from the system to patients, Nonadherence is a major issue in patients
with the restructuring and bureaucratization of
with kidney disease and is associated with
medical care.2,3 This change has been driven worse health outcomes, which translate to
by the need to address chronic illnesses and more morbidity and mortality.13,14 Patients
use self-management, new attitudes towards
with chronic kidney disease (CKD) are at
healthcare delivery, the management of scarce very high risk of poor adherence because of
resources, and the influence of individual the complexity of treatment and the high pill
service advocates.4,5 The health system has
burden, among several other factors.13,14 In
been encouraging patients to monitor and contexts of deficiencies in health systems or
manage their health, gain knowledge about situations in which unfavourable socio-
the disease and assume more responsibilities.6
economic factors act, patients must negotiate
The knowledge, skills and confidence patients these factors through demands, expectations,
need to manage their health and healthcare, and objectives related to healthcare and daily
described as patient activation, have been
life.
increasingly associated to a better quality of CKD remains a public health problem,
life and lower symptom burden and, therefore, affecting more than 700 million people world-
promoted by the health system.7,8
wide.15 Its most severe manifestation is kidney
Patients must perform a set of tasks related failure (KF), when kidney function must be
to self-care, managing the index chronic replaced by either maintenance dialysis or
disease and comorbidities, and handling the kidney transplantation. Renal replacement
physical, psychological, and social effects – therapy (RRT) is complex and expensive;
this is known as the burden of treatment often, rates of CKD and the provision of its
(BoT).9 Additionally, patients must continue care are defined by socioeconomic, cultural,
with responsibilities related to their daily life, and political factors.16 Patients with KF face
family, and work.4 However, some BoT may a significant BoT, made up of the interaction
be reasonable, necessary, situational or transi- of work and capacity, which are highly
ent; polypharmacy for multimorbidity or a spe- unstable situational factors particularly affected
cific acute crisis, for example.10 These tasks by socioeconomic factors.17
often require technical knowledge, specific
skills, and the support of the relational
network; additionally, they are complicated Theoretical framework
by patientś psychological or physical pro- The work of being a patient with a chronic
blems.10 People with a chronic condition illness brings into play processes of embedding
need to balance the BoT with the resources practices, maintaining and integrating them
available; if a patient’s capacity is over- into social contexts and in knowledge matri-
whelmed by the demands, a structurally ces.18 The BoT and the cognitive authority the-
induced decrease in the patient’s participation ories describe how work and capacity relate to
Roberti et al. 3

responding to demands on patients and their Approximately 30,000 patients are on dialysis,
relational networks, resulting in variations in mainly haemodialysis; 6000 patients are on the
service use and adherence to treatment.4,11 kidney transplant list, but only 1300 transplants
The theory explains how cognitive authority are performed each year.20,21
and experienced control moderate population
actors’ experiences of their accountabilities
and process-specific limiting factors. When Participants
they do so, it is often within the context of a The sample of patients and professionals was
temporal process defined by status passage. In intentional, comprising people with KF and
the case of KF, we have described this receiving any treatment, with any of the three
passage as a sequence of transitions that may types of health coverage in the country (public
occur unexpectedly, accompanied by fear, health, social security and private system) and
uncertainty, the experience of wasting time, a diversity of socioeconomic backgrounds. We
bringing changes in patientś social roles and included foreign citizens living in Argentina
capacities.19 This theory helps us understand who had migrated to receive or continue treat-
key mechanisms involved in configuring ment for KF. The inclusion criteria were as
people’s experiences of long-term life limiting follows: patients had to be at least 18 years old,
conditions in a context of unequally formed diagnosed with KF, be receiving some type of
relations between population and institutional treatment and be able to give informed
actors.11 consent. The sample comprised 50 patients, 30
This study contributes to the sociology of KF (60%) women and 20 (40%) men, with an
and to a richer understanding of chronic diseases, average age of 53 years, ranging from 21 to 88
adding to the literature on the experience of the years. Twenty-five (50%) participants were
disease and answering questions about how the covered by social security, 13 (26%) by private
disease and the BoT affect social life. In this medicine and 12 (24%) by the public system.
study, we focused on describing how patients We interviewed health professionals, physicians
with KF negotiated treatment and responsibilities and nurses specialising in nephrology, dialysis,
in the management of their disease, resulting in or kidney transplantation and administrative
potential relational nonadherence. staff working in the facilities. The sample com-
prised 14 healthcare workers; 9 (58%) were
women, with an average age of 43 years and a
Methods range between 26 and 60 years. Seven (50%)
participants were nephrologists, and 4 (29%)
Setting were haemodialysis nurses/technicians. Tables
We carried out this study in two healthcare 1 and 2 shows participants’ characteristics.
facilities: a nephrology centre offering haemo-
dialysis and peritoneal modalities of dialysis
and reference to transplant team and the
Data collection
haemodialysis service of a public hospital, Individual semi-structured interviews were con-
both in Buenos Aires, Argentina. Argentina ducted using a guide developed from our earlier
has universal health coverage that includes systematic review.17 Most interviews involved
the diagnosis and treatment of KF. Healthcare two or three sessions, which lasted between
is provided through a combination of multi- 20 min and 60 min. The interview guide
payers, including employer and labour union- included: diagnosis process, search for medical
sponsored insurance (social security), the help, treatment options, starting treatments, chan-
public system and private insurance; 82% of ging treatments, effects on daily life, resources
the financing comes from the public sector.20 and tasks for managing the disease and treatment,
4 Chronic Illness 0(0)

Table 1. Sample characteristics, patients.

Name
(pseudonym) Sex Age Time on dialysis, years Treatment received System

Adriana Woman 72 4 HD Public

Alejandra Woman 58 0.6 HD Private
Alexa Woman 47 7 HD Private
Andrea Woman 64 4 HD SS
Antonio Male 46 1 HD Public and SS
Beatriz Woman 28 0.5 HD SS
Betina Woman 22 0.3 HD/DP SS
Carlos Male 31 0.5 HD/TX Private
Claudio Male 56 6 HD/TX SS
Cristina Woman 54 7 HD Public
Daniel Male 59 3 HD SS
Elba Woman 51 1 HD SS
Elisa Woman 71 9 HD SS
Emilia Woman 35 4 HD Public and SS
Emma Woman 64 7 HD SS
Ernesto Male 62 1 HD Private
Esteban Male 47 0.4 HD SS
Wake Woman 62 15 HD SS
Francisco Male 58 10 HD Public and SS
Gastón Male 42 1 HD/TX Private
Gisela Woman 49 0.5 HD SS
Gladys Woman 56 7 HD SS
Hector Male 43 1 HD/TX Public and SS
Helena Woman 48 1 HD SS
Humberto Male 69 4 PD SS
Ignacio Male 31 3 HD Public
Irma Woman 55 7 HD Public
Jorge Male 48 2 HD SS
Joseph Male 59 2 HD Private
John Male 59 1 HD/TX SS
Laura Woman 60 10 HD SS
Lorraine Woman 21 7 HD/TX SS
Luis Male 48 1 HD/DP Private
Marcela Woman 55 1 HD Public
Frames Male 73 0.5 HD Private
Maria Woman 72 7 HD SS
Marta Woman 35 1.5 HD SS
Miriam Woman 47 4 HD Public
Patricia Woman 44 0.5 HD SS
Patrick Male 63 3 HD SS
Pedro Male 58 1 HD/TX Private
Ricardo Male 47 2.5 HD SS
Roxana Woman 51 1 HD Public
Ruben Male 62 0.5 HD Private
Sarah Woman 88 4 HD SS

(continued)
Roberti et al. 5

Table 1. Continued

Name
(pseudonym) Sex Age Time on dialysis, years Treatment received System

Susana Woman 60 2 HD Private

Thelma Woman 85 1 HD SS
Victoria Woman 62 0.8 HD/DP Private
Valeria Woman 48 10 HD/TXx2 Private
Viviana Woman 36 3 HD Public
Abbreviations: PD, peritoneal dialysis; HD, hemodialysis; SS, social security; TX, kidney transplantation; TXx2, twice-renewal
transplantation.

Table 2. Sample characteristics, health and professionals formed a unique corpus. For
professionals. the analysis, we started from a frame of reference
with the concepts of the BoT and Cognitive
Role Sex Age
Authority theories. Iteratively, the initial code
Doctor, Nephrology Woman 45 manual was adjusted and used to compare codes.
Doctor, Nephrology Woman 41 We used an integrated approach with inductive
Doctor, Nephrology Male 45 code development and a deductive frame of refer-
Doctor, Nephrology Male 60 ence from which the theories and interview
Doctor, Nephrology Male 26 guide.22 The first author shared the initial coding
Doctor, Nephrology Woman 26 and data with the other authors who reviewed the
Doctor, Diabetology Male 35
data and provided input.
Doctor Nephrology Male 60
Nurse Woman 29
Nurse Woman 57 Ethical aspects
Nurse Male 53 We conducted the study under the Principles of
Nurse Woman 54
Good Clinical Practice and the Declaration of
Employee Male 34
Employee Woman 32
Helsinki.23 The Ethics Committee of the Gino
Germani Institute of the University of Buenos
Aires evaluated the protocol and informed
consent. Informed consent was obtained from par-
relationships with professionals, other patients, ticipants; confidentiality of information and pro-
family, friends, employment, decision-making tection of participants’ identities were ensured.
processes, transplantation, and end-of-life deci- Participantś names were replaced by pseudonyms
sions. Individual interviews with professionals for better understanding. The names of the institu-
covered the type of work, contact with patients, tions in which the study was conducted were not
information provided to patients, patients’ used to maintain confidentiality.
responsibilities, expectations, etc.

Results
Data analysis
Interviews were audio recorded and transcribed Health providers’ expectations
verbatim; data that could identify the participants Physicians’ expectations regarding patients’
were eliminated. Transcripts were uploaded to adherence to treatment differed according to
Atlas.Ti v8.1.3 (Scientific Software Development the stage in their illness trajectories. According
GmbH, Germany). All interviews with patients to professionals, patients who had suffered
6 Chronic Illness 0(0)

symptoms and experienced an improvement dialysis centre. Patients perceived that some
upon commencing dialysis were likely to feel specialists supported one treatment modality
relief and gratitude and, for some time, would driven by economic interests, that treatment
be clearly adherent. Patients who received a options had not been fully explained to them,
diagnosis without having experienced serious that they did not have the chance to choose.
symptoms were more likely to underestimate Professionals explained that this perception
the need for treatment and would delay RRT. of lack of options was likely the result of the
Providers perceived patients grew tired of the shock patients experienced when receiving
treatment after some time and would try to skip the diagnosis, the negative cognitive effects
haemodialysis sessions or reduce the number of the disease, the low education level of
of hours of each session. many patients or the lack of specialised train-
ing of clinicians, as explained by a
We have very few patients who are more nephrologist:
defiant, but there is a moment there is no
other way out. They have to do what they
We explain it (the treatment) to them, and they
are told, or else they will end up badly and
doń t understand it, but well, we can’t do any-
they know it. I’ve got to teach them and
thing else. When you explain this to patients,
make them understand what the disease is
they understand nothing. You can explain
so that they can comply with the treatment,
once, twice, three times. (Nephrologist).
because if they don’t… (Nephrologist).

Adherence to treatment defined “good Patients knew the passage to being a patient
patients”. Often, professionals took a patient on haemodialysis implied an overwhelming
as a model because of the patient’s interests change in all aspects of their lives and that
and treatment adapted to the professional’s not starting a treatment had fatal consequences.
objectives. Physicians described renal patients Some patients received the diagnosis, the news
as people who were always unhappy and irrit- of an immediate start of dialysis and were intro-
able, causing carers and families to get tired duced to the haemodialysis machines within
of complaints. As a result, providers explained the same visit. Some patients tried delaying
that it was common to see patients becoming the start of dialysis, and some patients even
increasingly isolated. told professionals and family that they pre-
ferred to die. Professionals often employed
And there’s a time when the family get tired family members to convince the patient to
of the patient and the patient gets isolated. accept treatment. Often, this negotiating
Their family doesn’t care any longer, unless process extended over days with additional
there is some complication or they talk to us visits and phone calls, in which patients and
when they can’t stand the patient any carers received detailed information on the
longer. That is the reality of chronic kidney advantages of a specific treatment, the possibil-
disease. (Nephrologist). ity of a transplant, and the promise of better
health. Family members appealed to the
Negotiating a treatment modality patient’s emotions and family values to con-
When prescribing RRT, providers evaluated vince them. Patients who arrived at a diagnosis
patients’ self-sufficiency to perform daily with deteriorated renal function did not have
tasks and stressed the importance of their inde- time to consider a kidney transplant before dia-
pendence. Providers believed that autonomous lysis (called pre-emptive transplant). Patientś
patients could receive peritoneal dialysis at deteriorating health and the pressure from
home, which implied not having to go to a family and providers pushed them to accept.
Roberti et al. 7

Once the modality was decided, patients structural factors such as a lack of coverage, a
also needed to negotiate the haemodialysis malfunction in the dialysis centre, a problem
schedule based on availability, preferences, with the transfer services covered by the insur-
and obligations. Although choosing the sched- ance, or not being able to afford transport in the
ule was a minor issue compared to the need to case of patients in the public system. If a patient
start treatment, this was an important factor for under the private scheme was not covered, they
adherence. Each of the three weekly sessions had to transfer to the public system.
could take up to seven hours of the patient’s Conversely, patients in the public system
day if travel time was considered. Depending experienced an interruption of treatment when
on the assigned schedule, the patient could con- they began procedures to obtain social security
tinue working, studying, caring for someone insurance.
else. In fact, patients could lose their job or Regularly, patients needed to negotiate the
their informal source of income if there was a frequency of visits with specialists, medication
conflict with the schedule. Patients perceived doses, dietary restrictions, the convenience of
providers did not fully acknowledge the an examination, and the need for surgery or
serious implications of the dialysis schedule other intervention. A context of economic pro-
on their routine and felt frustrated with the blems brought a reduction of benefits, such as
assigned modality and schedule. Laura no free transfers to health centres, new red tape
explains her feelings when she started dialysis: to access medication, staff shortages, and lower-
quality meals distributed during haemodialysis.
I didń t even buy clothes back then. I felt like I The difficult economic situation many patients
was dying at any moment and I worked just experienced in some degree affected patients’
because I needed the money, but I didń t capacity to access care; patients could not
have any expectation, no project. I planned always afford every single medication prescribed
nothing, nothing at all. It was from one day by all specialists – as some were not fully
to another, day by day. I’m sure I was like covered-, could not pay for transportation to a
this for three or four years. (Laura, 60, health facility or afford a specific diet. Patients
social security). complained that the accumulation of comorbid-
ities, specialists and treatments was beyond
Adherence to dialysis, medication and diet their reach and that this was not taken into
account. To confront problems, strategies used
restrictions by patients included choosing what medication
Although most patients feared fluid accumula- they needed to buy, assessing their own percep-
tion during days without haemodialysis ses- tion of treatment priorities, the costs of medica-
sions and decompensation during travel to or tion, the availability of resources, and the type
from the dialysis centre, some skipped dialysis of relationship they had with providers.
sessions if the schedule was in conflict with a Additionally, patients delayed examinations or
social activity, they perceived it to be important visits, scheduled all visits in one day and tried
if there was an interpersonal conflict with to obtain authorization for free transportation to
another patient in the same shift or a health pro- the health facility.
vider. Often, patients tried to negotiate these Changing the medication regimen was a fre-
unauthorised changes with technicians or quent response to adverse effects perceived as
nurses who were more frequently in contact intolerable and when providers did not seem
with the patients. Most patients feared cata- to understand the patient’s concerns. Patients
strophic consequences of interruptions, the would initially try to discuss a change, but if
result a medical complication with the catheter negotiations did not succeed, changes were
or fistula, an infection, a fall, anaemia, or made without the physician’s permission.
8 Chronic Illness 0(0)

Adherence to the immunosuppressive medica- necessary negotiation processes to obtain

tion to avoid the rejection of the transplanted assistance, medication, and tests, the patient
kidney may also be affected when patients’ became increasingly isolated, stopped leaving
complaints about side effects or when there their home and barely complied with the treat-
appear relational conflicts in the living donor- ment regimen.
recipient dyad. Pedro explains how he con- If patients needed financial support from
fronted doctors to ask for a change in immuno- their relational network, family dynamics
suppressive medication because he could no were significantly altered, and conflicts
longer tolerate its adverse effects: emerged because care involved additional
expenses and work. The same was true for sib-
I couldn’t eat anything. I had allergic reac- lings, nephews with aunts and uncles, or grand-
tions to everything. He ate what I knew was children with grandparents. When the sick
Ok, like a baked potato, but I felt so sick. person was the breadwinner in a family, there
One Friday night I just got into a cold were changes in roles within the family,
shower to calm an itching sensation all over. exacerbating difficulties in caring for the chil-
I called my doctor and told me “I may keep dren. Younger patients, faced with the diagno-
the kidney but die of pneumonia”. So, I sis and the impossibility of working as they did
insisted so much until they (the doctors) told before, became dependent on their parents
me there was a drug called belatacept that again. Patients reported that their disease
they could try. They were afraid of switching could ruin the lives of family members and
my medication. But I told them I took the risk, their carers because of the patients’ depend-
that I could sign any paper if necessary. ence. In extreme cases, this situation led to a
(Pedro, 58, private system). divorce, and this meant being left without
support. Laura explained:
Negotiating family responsibilities
My husband left us. I can see now that he was
As an effect of the disease and treatment,
overwhelmed by the situation, he left my son
patients must redefine their relationships with
and me. He was a just a kid, he was 10 years
their networks. Younger people, by revealing
old. I would drop him off at school, go to dia-
the disease, risked not being accepted, while
lysis. He would get home where I had left his
older people risked losing their autonomy.
meal ready. I didn’t have time to work. My
Although most patients did not want to be a
son had problems, anxiety issues and so on.
burden to their families, they often needed
I think it’s all because of my illness. So, I
help to go out, consult with doctors, get tests,
worked hard to organise things, now I can
go shopping, and even go to each dialysis
handle things, but it´s not easy. (Laura, 60,
session; patients with more deteriorated health
social security).
also needed help to eat, dress, and wash.
Family members served as protection against
social isolation. However, many elderly The sexual aspect of relationships was also
patients lived alone, and contact with other deeply affected by the disease and treatment
patients and professionals at the dialysis unit because of fatigue caused by the treatment or
was the only social contact in their daily the associated anaemia or because of the dis-
lives. Home peritoneal dialysis patients comfort caused by having a catheter, among
involved family members, for training and other reasons. This could affect the couple
support if the patient did not feel well. If the until the breakup, and in other cases, some
network did not provide support and the sort of sexless living arrangement was
patient did not have the capacity to enter into established.
Roberti et al. 9

Patients reported that their young children then we’ll talk.” I don’t feel like meeting
felt sad, changed behaviour, and lowered guys or girls. (Beatriz, 28, social security).
school performance as a result of their parents
being ill. Likewise, if the children were sepa-
rated from their mother who had to emigrate, Negotiating a kidney transplant
the separation would seem to have no solution. The waiting time to receive a kidney from a
Patients on dialysis had to get used to see their deceased donor was clearly beyond the
children less time, leading to feelings of help- patient’s control. After being on the waiting
lessness, especially when the children were list for a long time, some patients began to
very young. Patricia explained how her question the transparency of the organ alloca-
illness and treatment negatively influenced tion system. At some point, most patients felt
the family dynamics: depressed because of this uncertainty, and
even considered discontinuing haemodialysis.
My daughter, who is a teenager, was affected Patients mentioned that seeing their loved
by not seeing me at home and had problems ones grow up or expecting a transplant soon
with low weight. She didn’t want to see the encouraged them to continue and enrol in a
problem; I was coming here in the afternoon transplant program. However, many patients
and she didn’t want to eat alone. The family confirmed that they wanted to delay enrolment
dynamic got a little complicated there. She in the waiting list because they needed to
recovered now that she sees me better and I resolve medical issues before the procedure,
am more at home. (Patricia, 44, social for fear of adverse effects of immunosuppres-
security). sion, and because they expected difficulties
taking medication. Moreover, some patients
The role of caregiver could be extremely described that they were not interested in a
important for many patients, even the reason transplant because they were happy with the
for compliance, hoping for a kidney transplant- results and quality of life offered by dialysis,
ation as a solution. When patients were care- did not see transplantation as a definitive solu-
givers, the onset of illness affected and tion, perceived immunosuppression medication
redefined their role, and family responsibilities excessive, and feared surgery. In most cases,
with other members of their network needed to patients saw the idea of receiving the kidney
be renegotiated, with upsetting consequences. from one of their children as risky and selfish.
New relationships were also affected. Some Some patients described that the transplant
patients lost interest in or opportunities to team encouraged them to look for a living
meet new people because they felt exhausted donor, and many felt uncomfortable with this.
from having to explain what was wrong with For those patients who explored the possi-
them or because they were constantly worried bility of receiving a kidney from a family
about symptoms, diet restrictions, and gave member, the news that the living donor was
up social activities so that they were not not compatible could be devastating, as they
tempted to eat or drink. Beatriz explains: feared having to wait for years for a deceased
donor or not receiving a transplant at all.
Now I don’t want to meet anyone. You know Some couples who needed to work or had
when they ask you out? I mean, I don’t feel young children did not want to risk entering
like it. I go out with my friends from school an operating room for major surgery, one as a
who know my problem and I know them. donor and the other as a recipient, with pro-
But I don’t feel like meeting new people and longed recovery times in which they could
starting to count. Yeah, I get tired. It’s like lose income or could not be able to care for
I’m saying, “Take a tape, listen to it, and their children. Some patients explained that
10 Chronic Illness 0(0)

they knew of transplant tourism abroad, but no Negotiating hospital admissions

one mentioned thinking of that possibility.
When medical complications made hospitalisa-
tions necessary, patients often opposed to be
You can buy a kidney abroad. However, it´s admitted because they did not want to be a
very expensive, I mean, very! She (friend) burden for their family, said they were tired
has had two transplants: one was 60,000 of the disease and feared a long stay with a
dollars, and the other was 70,000 dollars. bad outcome. For patients in the private and
She got sick when she was young, she’s social security systems, negotiations also
already 70 years old, she was transplanted involved accepting the assigned facility where
when she was 40, she already had two the patient would be admitted, as patients had
15-year-old kidneys, one she bought in preferences regarding quality or proximity to
Bolivia and the other she bought in their home. In these negotiations, the patient,
Venezuela. She went there, paid, stayed in a their family, healthcare providers and insur-
five-star hotel, she told me, and then had the ance representatives could be involved.
transplant. (Ernesto, 62, private system). Regardless, the negotiations only resulted in
delays and the patient´s acceptance of what
was indicated by the processionals and
Patients also confirmed they could not offered by the insurance. In the public
access a kidney transplant if their living condi- system, options were more limited. In any
tions were not suitable for a person receiving case, a long hospital stay could have cata-
immunosuppressive medication; patients were strophic consequences for the patient´s health,
asked to be living in a house with no shared network dynamics and finance.
bathroom, for example. A homeless man was When the frequency of complications
receiving haemodialysis but could not be increased, patients expressed a sense of coming
enrolled in the transplant list Foreign patients to the end of life and even considered abandon-
also needed permanent residency to apply for ing dialysis. However, these comments were
deceased donor transplant or temporary resi- generally shared among patients but not men-
dency for a transplant with a living donor. tioned to professionals. Conservative treatment
Additionally, various of these patients shared was never mentioned by patients or physicians.
a house with family or friends, sometimes in If patients were very ill, family members led
precarious conditions. Importantly, foreign the conversations and decisions about the end
patients could not receive a transplant to of life. During hospitalisations, relatives of
return to their home country because they some patients decided that the patient would
could not secure coverage of immunosuppres- not return to dialysis because it made little
sive drugs there. Ricardo from Venezuela sense to prolong the agony. Elisa was hospita-
explains: lised for several months, she returned to haemo-
dialysis in poor health, in a wheelchair, with a
colostomy bag, she was tired of being sick, and
I cań t go back, therés no medication. Since
said, “I do not want to be a burden anymore, I
there were no immunosuppressants, 40% of
ruined my family’s life, I want euthanasia”. A
the transplant patients lost their kidneys, and
few days later, the patient died.
some even died. The people who still
survive are because they could afford to
travel abroad, buy the medicine abroad, and
Discussion
return. They go out, buy six months” worth This study draws attention to structurally and
of medication and come back. (Ricardo, 47, relationally induced nonadherence in a setting
social security). with universal healthcare but limited resources.
Roberti et al. 11

When patients perceived that the demands on attempts to manipulate for advantage.26 We
them were excessive or in conflict with their found that, for any subsystem, resources were
priorities, they entered into negotiations with limited due to an adverse economic situation,
healthcare providers or carers. These negotia- and patients had to fight to maintain benefits.
tions regarding treatment, responsibilities, If patients felt their complaints were not lis-
roles or transplantation were affected by limit- tened to and negotiations were not successful,
ing factors, patients’ capacity, and professionalś they interrupted or modified treatment even
expectations; moreover, the results could lead to with detrimental effects on their health.
the interruption or modification of treatment. Professionals, on the other hand, expected
Accepting a treatment modality and being understanding of the limiting factors that
enrolled in the transplant waiting list were two affected services.
instances of negotiations with important conse- Surprisingly, not all patients had made a
quences on the patient´s life. Patient adherence clear decision in favour of receiving a trans-
to treatment is the product of constant negotia- plant. For patients, the decision-making
tions to balance expectations, accountability process was often based on finding a balance
and resources. Relationally induced nonadher- between known quality of life and future
ence may arise when health professionals do quality of life.27 This was the result of
not or cannot enter into negotiations over unfounded expectations, lack of information,
patients’ beliefs or knowledge about what is and the impossibility of keeping motivation
possible for them to do.11 to meet the negotiated accountabilities, such
When deciding on the treatment modality or as pretransplant tests. Patients experienced an
on the dialysis schedule, patients may receive overwhelming uncertainty. In this context, a
information on treatment options, but they do patient may prefer to remain on dialysis
not necessarily participate in the decision- because of the relative stability provided by
making process.24 This explains why patients routine treatment versus the risk involved in a
did not recall having chosen a modality, kidney transplant.27 The shortage of organs
although professionals emphasised that they from deceased donors has led to the acceptance
offered information to their patients. This of kidney transplants from living donors; this
approach follows a paternalistic mindset in implicitly or explicitly requires reciprocity
which professionals communicate what they that translates into pressure to be grateful and
think patients need.24 In fact, patients may be responsible.28 We found adversarial relation-
aware of the health risks of changing or inter- ships; patients perceived they were pressured
rupting their treatment; however, their risk- to look for a potential living donor among rela-
taking is not based only upon a rational weigh- tives and that their values were not being taken
ing of medical benefit and may not accord with into account.
professionalś framework and intention, as seen A strength of the study was that the use of
by Harrington et al..25 multiple interviews over time added depth
Attempts to begin negotiations often trans- and a nuanced description of interactions;
late into complaints directed to healthcare repeat interviews contributed to obtaining a
staff. Healthcare providers often view patient sense of how peoplés experiences were
complaints as detrimental to professionals, shaped by changing treatments and interven-
healthcare, and the organisation of service, tions. Given the small number of participants
especially in resource-limited settings.26 in this study, the perspectives presented here
Then, complaints may be interpreted as indicat- cannot be interpreted as representing the
ing errors in the relationship with the patient, as experiences of all patients.
signs of distress or misunderstanding, or, espe- A set of principles has been proposed to
cially in resource-constrained settings, as address structurally induced non-adherence:
12 Chronic Illness 0(0)

Assess the weight of treatment burden, encourage Ethical approval

coordination in clinical practice, acknowledge Ethical approval for this study was obtained from
comorbidity in evidence, and prioritise from the Gino Germani Institute Ethics Committee of the
patient perspective.29 To facilitate agreement on University of Buenos Aires, Argentina. Study was
healthcare responsibilities, providers may use conducted according to the World Medical
shared decision-making tools and consultation Association Declaration of Helsinki. No intervention
models of collaborative encounters. It is critical was performed in the course of this study.
to manage patient expectations through compre-
hensive education modules and regular follow-up Guarantor
of waitlisted patients, for example. On the other JR
hand, providers’ expectations may not be
always related to patients’ capacities; here evalu- Informed consent
ating treatment burden is most important. With
Verbal informed consent was obtained from the
this valuable information, healthcare providers
patient(s) and professionals for their anonymized
should facilitate patients’ access to social information to be published in this article.
workers and psychological support.
Our findings emphasise the importance of
establishing attainable, sustainable and informed ORCID iD
objectives throughout treatment, resulting from Javier E Roberti https://orcid.org/0000-0002-
negotiations between professionals, patients 4285-5061
and carers. If expectations expressed by health-
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