Mexican American Women's

Adherence to Hemodialysis Treatment:

A Social Constructivist Perspective
Mary S. Tijerina
Mexican Americans have as much as a six-times greater risk of end-stage renal disease (ESRD)
than non-Hispanic white Americans, and women show a faster rate of dechne in diabetic
renal functioning. The leading treatment for ESRD is hemodialysis, an intensive, complex
treatment regimen associated with high levels of patient nonadherence. Previous studies of
patient adherence have adopted a biomdical, practitioner-oriented approach focused on
performance of fixed behaviors and ignoring contextual and motivational factors.The author
describes a social constructivist approach to understanding how female Mexican American
dialysis patients experience their disease, the treatment regimen, and the consequences ofthat
experience. Mexican American women's perceptions and psychosocial factors were examined
to understand what these women viewed as important to their realities as dialysis patients.
Poverty, longer treatment history, and immigrant status emerged as factors that appeared
to influence treatment nonadherence. Perceived identity losses, heightened awareness of
mortality, and family dysfunction emerged as themes that participants viewed as preeminent
in their day-to-day lives. A social constructivist perspective is highly compatible with social
work principles of person-in-environment and starting where the client is. This perspective
provides a valuable framework for informing social work practice with this special population
of Mexican American dialysis patients.
KEY WO1.DS: chronic illness; hemodialysis; Mexican American;patient adherence; women
G
enetic predisposition, lifestyle risks, en-
vironmental Stressors, and unequal access
to health care are among the factors con-
tributing to a growing prevalence of chronic illness
among racial and ethnic minorities in the United
States. In the absence of a cure, chronic conditions
are medically managed through treatment regimens
aimed at slowing or stopping disease progression and
preventing complications related to the condition.
Such regimens typically involve self-administered
actions, including following medication schedules,
making lifestyle changes (for instance, dietary
changes, exercise), and reporting for prescribed
treatment sessions. Unfortunately, whenever people
are given responsibility for implementing prescribed
treatments, nonadherence is common. Failure to
adhere to treatment recommendations is a serious
problem; it can jeopardize an individual's survival,
complicate the illness condition, reduce quality of
life, and require additional medical intervention, in-
creasing physical and fmancial costs to the individual
and increasing demand on health care resources.The
extent of the problem is difficult to assess, primarily
because measures of nonadherence vary depending
on the particular treatment regimen. Neverthe-
less, the pervasiveness of the problem is evident
in research fmdings indicating that only one-third
of patients correctly follow physicians' directions
(Becker, 1990). Research on treatment adherence
traditionally has reflected a biomdical approach,
focusing on the extent to which individuals follow
a prescribed set of actions, with scant attention to
the context of behavior or the phenomenological
and psychosocial concerns of people suffering from
chronic illness. As a result, traditional nonadherence
research has been criticized as reductionistic, uni-
dimensional, practitioner-oriented, and ignorant of
motivational factors (Corbin & Strauss, 1988;Karoly,
1993; Trostle, 1988). Studies of treatment nonadher-
ence that focus on how patients experience their
illness, treatment regimen, and adherence behavior
are limited. The present study seeks to address this
research gap and the relative neglect in the literature
of the population of Mexican American women. A
232 CCC Code: 0037-8046/09 $3.00 O2009 National Association of Social Wori<ers
social constructivist approach is adopted to explore
the cognitive, phenomenological, and psychosocial
factors influencing Mexican American women's
adherence to the hemodialysis treatment regimen.
MEXICAN AMERICANS, END-STAGE RENAL
DISEASE, AND HEMODIALYSIS
Primarily because of a higher incidence of type II
diabetes (Pugh, Medina, Cornell, & Basu, 1995)
and higher rates of complications from diabetes,
Mexican Americans in the United States have as
much as a six-times greater risk of end-stage renal
disease (ESRD) than non-Hispanic white Ameri-
cans (Schwab, Meyer, & Merrell, 1994). Additional
ES1\D risk factors for Mexican Americans include
poorer adherence to treatments for diabetes and
hypertension (Pugh et al., 1995); lower educational
levels (Lafayette, 1995); and lower income levels,
which can result in decreased access to health care
(Sniedley, Stith, & Nelson, 2002).
ESRD is a serious, life-threatening disease that
affects almost every aspect of a person's life. Physical
symptoms include fatigue and weakness, decreased
alertness, memory loss, and impaired thought
processes (Hener,Weisenberg, & Har-Even, 1996).
Inability to maintain employment is common,
often resulting in fmancial pressures and lifestyle
modifications. Changes in family and social roles
may also occur as a result of employment restrictions
and inability to perform usual roles in the home.
Feelings related to loss, dependency, disability and
issues related to death and dying are among the
psychological challenges often faced by people
with ESRD.
The leading treatment modality for people with
ESRD is hemodialysis, accounting for approxi-
mately 92 percent of all people undergoing renal
replacement therapy (U.S.Renal Data System,2005).
Hemodialysis treatment sessions average four hours
in length and typically are performed three times
a week. In addition to undergoing this mechanical
cleansing of the blood, patients must also maintain
demanding medication schedules and severe fluid
and dietary restrictions as compensation for their
kidneys' inabihty to excrete fluids and wastes (Bame,
Petersen,&Wray, 1993).The hemodialysis regimen
has many characteristics that have been associated
with higher rates of patient nonadherence, includ-
ing complexity of recommended actions (Haynes,
Taylor, & Sackett, 1979), duration of treatment
(Gerber, 1986), incidence of side effects (Chris-
tensen,Benotsch, & Smith, 1997), and requirement
of changes in lifestyle or habitual behaviors (Kaplan
& Simon, 1990).
PATIENT NONADHERENCE
The issue of patient nonadherence has been the
subject of much research from a variety of disciplin-
ary perspectives. Biomedically oriented studies of
treatment nonadherence have focused on four major
areas: patient characteristics, illness characteristics,
characteristics of the treatment regimen, and the
physician-patient relationship. Although research on
patient characteristics associated with nonadherence
has been largely inconclusive, among dialysis patients,
younger patients are more likely to be nonadherent
(Bame et al., 1993; Leggat et al., 1998). Research
on characteristics of the treatment regimen sug-
gests some relationship to nonadherence.The more
intense (for example, higher number of treatments,
greater frequency of dosage) and complex the total
regimen, the more likely it is to lead to nonadher-
ence (Haynes et al., 1979; Paes,Bakker,& Soe-Agnie,
1997).The hemodialysis regimen, with its frequent
and extended treatment sessions, dietary restrictions,
and complex medication schedules, is among the
most intense and complex of treatment regimens.
Studies focusing on the physician-patient relation-
ship have identified such issues as communication
problems, lack of shared meanings, and unequal social
or power status. Beyond the basic difl^iculty of com-
municating information, lack of English language
skills can also exclude ethnic minority patients from
the dominant forms of thought through which so-
ciety's ideas about health and illness are constructed
(Anderson, Blue, & Lau, 1991).
A large body of nonadherence research has fo-
cused on sociodemographic variables, although find-
ings are inconsistent (Hailey & Moss, 2000) .Variables
identified in this literature include psychodynamic
processes, sociocultural factors, and cognitive factors,
including locus of control, health beliefs, and causal
attributions (Becker, 1990; Sensky, Leger, & Gilmour,
1996). Factors associated with nonadherence include
patients' feelings related to illness and dying (Blum,
1985; Nehemkis & Gerber, 1986), patients' sense
of physical and emotional vulnerability (DiMatteo
8c DiNicola, 1982), social support (Ell, 1996; Lo,
1999), poverty, and reduced access to health care
(Fishman, Bobo, Kosub, & Womeoda, 1993). Sensky
et al. (1996) found that nonadherent behavior was
predicted for younger patients with external locus
Tij ERiNA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective 233
of control, higher levels of depression, and poor
social adjustment.
Research on nonadherence has been complicated
by disagreement on what exactly constitutes nonad-
herence and how it should be measured. Measures
used in nonadherence studies have included missed
medical appointments, failure to take medications
as prescribed, and failure to make recommended
lifestyle changes in areas such as diet and exercise.
Some measures are subjective, such as patient self-
reports and assessments by health care professionals,
whereas others are objective, such as biochemical
analyses. For hemodialysis patients, adherence tra-
ditionally has been measured objectively in three
areas: medication taking, fluid intake, and dietary
restrictions (Bame et al., 1993). Studies focusing on
hemodialysis patients have estimated that between
30 percent and 70 percent of patients are nonadher-
ent with medications, 25 percent to 80 percent do
not comply with fluid restrictions, and between 15
percent and 50 percent do not comply with dietary
restrictions (Bame et al., 1993). Christensen et al.
(1992) found that dialysis patients' perceptions of
family support were related to fluid intake adherence
but not to dietary restrictions, and Boyer, Friend,
Chlouverakis, and Kaloyanides (1990) found that
higher levels of family support were associated with
low serum potassium and phosphate levels. Clearly,
patient nonadherence is a pervasive problem among
hemodialysis patients; however, studies of female
Mexican American dialysis patients are scant.
CONCEPTUAL FRAMEWORK AND
RESEARCH QUESTION
Social constructivism is a complex perspective, lack-
ing clear consensus in terms of its defmition; how-
ever, there are certain general concepts associated
with this approach. Social constructivism proposes
that what is known or understood is the result of
processes within communities of understanding
rather than of individuals operating as isolated
entities. In other words, an understanding of what
occurs in society and the knowledge that is built on
this understanding come from a process of mutual
agreement linked to the traditions, language, and
culture of a community (Cottone, 2007).The con-
struction of knowledge, then, occurs within culture
and context and involves interpersonal processes.
According to Burr (1995), social constructivism
challenges "taken-for-granted" knowledge and the
way in which it becomes accepted as truth. Social
constructivism assumes that people have different
"versions" of reality that depend on their particular
communities of understanding. People s realities are
established as "truths" through social processes and
the interactions people have with others' versions
of reality. What people come to believe together
becomes absolutely true or real in their communities
(Cottone, 2007). Finally, assuming that knowledge
and social action go hand in hand, it stands to reason
that different versions of reality will lead to different
patterns of social action (Burr, 1995).The social con-
structivist perspective thus aims to understand how
people construct their own realities and meanings
of what is important as opposed to understanding
some external, independent reality.
The social constructivist perspective was adopted
for the present study, which had the following re-
search question: How do Mexican American women
undergoing dialysis treatment understand and make
meaning of their illness and the treatment regimen,
and do these constructions influence treatment ad-
herence? Guided by this approach, the study sought
to explore the psychosocial, cognitive, and cultural
factors most salient in shaping the adherence behav-
ior of this underrepresented population.
METHOD
Selection of Participants
The study sample consisted of 26 Mexican American
womeri receiving hemodialysis treatment in eight
outpatient dialysis clinics operating in central Texas.
Purposive sampling was used to identify women who
were between the ages of 30 and 55, were residing
in private homes (that is, not residing in nursing
homes), and had spent a minimum of six months
in hemodialysis treatment.The rationale for the age
and residence criteria was that women with these
characteristics were more likely to have responsibility
for tasks related to dietary practices (meal planning,
grocery shopping, and cooking).The time require-
ment was based on the assumption that a six-month
period is sufficient to allow stabilization of physi-
ological functioning and adequate experience of the
treatment regimen. Dialysis social w^orkers at each
of the participating clinics facilitated access to the
population and brokered initial contacts between
the researcher and potential participants.
Data Collection
Data were collected using three methods: (1) an
orally administered survey at the initial contact.
234
Social Work VOLUME 54, NUMBER 3 JULY 2009
(2) in-depth interviews conducted in participants'
homes, and (3) standardized adherence data obtained
from dialysis clinic records. At initial contact, the
researcher estabHshed participants' language prefer-
ence (English or Spanish) and obtained informed
consent. Consenting participants completed a brief,
oral survey that gathered demographic and medical
history information. In-depth narrative interviews
were scheduled at the end of the initial contact and
subsequently conducted in participants' homes. A
semistructured interview schedule explored wom-
en's knowledge, perceptions, and realities concern-
ing such variables as knowledge and beliefs about
ESRD and hemodialysis, the illness and treatment
experience and meanings, and motivations and sup-
ports. Interviews were audiotaped for subsequent
transcription and analysis. Interviews conducted in
Spanish were transcribed in Spanish.The transcripts
were then translated into English for purposes of
analysis. Reverse translation was used to ensure fidel-
ity and accuracy of translation. Interviews averaged
two hours in length and were conducted prior to
the coection of treatment adherence data to avoid
researcher bias in the interview process.
The third and fmal stage of data collection
gathered information from participants' treatment
records, specifically serum phosphate (PO^), the
measure of adherence selected for this study. Level
of PO^was selected as the measure of treatment ad-
herence because it can indicate both diet adherence
and medication adherence (Bame et al., 1993;Leggat
et al., 1998). Although nonadherence is often por-
trayed as a dichotomous, static concept, such a view
fails to recognize that nonadherence is a dynamic
phenomenon, affected by shifts in an individual's
emotional, cognitive, and rational processes and by
environmental changes. To allow for variation in
adherence behavior, a time-series approach to its
measurement was selected over a cross-sectional
approach. Participants' PO^ levels were collected
monthly during two time periods: the three-month
period preceding the date of the in-depth interview
and the seventh through ninth months preceding
the interview.The six values were averaged to yield
a mean monthly PO^ value for each participant.
For purposes of examining resulting themes in the
constructivist findings for the dependent variable of
adherence, participants were classified into one of
two groups: (1) adherentthose with a mean PO^
value of 6.0 mg/dL or lower and (2) nonadherent
those with a mean PO value over 6.0 mg/dL.The
6.0 mg/dL cut-point for adherence is consistent
with the Health Care Financing Administration
quality review standards for dialysis treatment (Bame
et al., 1993).
Data Analysis
Analysis of data involved three stages: (1) thematic
analysis of interview transcripts, (2) descriptive
analysis of quantitative data from clinic records and
closed-ended responses to survey and interview
items, and (3) an integrative analysis of the descriptive
and constructivist findings on adherence.Thematic
analysis of the interview transcripts was approached
from the social constructivist perspective. Analysis
began with a "start list" (Miles & Huberman, 1994)
or template consisting of major codes, subcodes, and
categories of anticipated responses derived from
theory, preexisting knowledge of the hemodialysis
regimen and Mexican American culture, and review
of the transcripts from a pilot test. Revisions to the
original start list were made on the basis of readings
of the transcripts and recognition of meaningful
themes in the data. As analysis proceeded, new
codes and categories were identified, incorporated
into the template, and systematically reapplied to the
transcripts in an iterative process. Once the final list
of codes was applied to the transcripts, pattern cod-
ing (Miles Sc Huberman, 1994) was used to surface
common themes across cases. Member checking by
participants was used to establish confirmability or
trustworthiness.
FINDINGS
Descriptive Analysis of Quantitative Data
Demographic Characteristics of the Sample. The
sample (iV = 26) ranged in age from 30 to 56 years,
with a median age of 44.8. The majority of the
women (73 percent; = 19 were third-generation
(grandchildren of immigrants) residents of the
United States; six (23 percent) were immigrants or
first-generation residents. Over half of the sample
(58 percent; = 15) preferred to communicate in
English. Four (15 percent) participants spoke ex-
clusively Spanish; three (12 percent) of these were
immigrants. Although 46 percent of the sample (
= 12) had graduated from high school, more than
one-third (n = 9) had completed fewer than nine
years of formal education. Only one (4 percent)
participant had a college degree. Eighty-two percent
of the participants (n = 23) lived in households with
at least two other people, typically representing a
TijERiNA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective 235
nuclear family. Almost half (42 percent, n = 11)
were married or living with a domestic partner, and
one-half of the participants (n = 13) had at least one
minor child living in the home.
Although all participants appeared willing to
report household income, six women (33 percent
of the sample) reported that they did not know the
amount earned by their husbands or other members
(sons, brothers) of their households. Thus, income
data reported represent conservative estimates.
The majority of the sample (62 percent, n = 16)
reported annual household incomes of less than
$18,000, with more than one-third ( = 9) reporting
incomes below $12,000 and eight participants (31
percent) reporting household incomes below the
poverty line (U.S. Department of Health and Human
Services, n.d.). As additional indicators of poverty,
35 percent of participants (n = 8) were receiving
food stamps, and 23 percent (n = 6) were residing
in public housing. Only three (12 percent) of the
women were employed at the time of the study, two
(8 percent) of them on a full-time basis. Of the 23
(88 percent) participants who were not employed,
all but two had a history of previous employment,
primarily in unskilled service jobs (cashiers, house-
keeping, personal care aides), and had ended their
employment either at the time of or shortly before
beginning dialysis treatment.
The majority of participants (69 percent, = 18)
had developed ESRD as a consequence of diabetes;
five (19 percent) women reported that they did
not know the cause of their renal failure. One-
half of the participants reported a family history
of the particular underlying condition to which
they attributed their ESRD, and nine (35 percent)
women had family members who had received or
were receiving hemodialysis. For all but one of the
participants, hemodialysis was the only treatment
modality experienced. Although a few of the women
expressed interest in transplantation, at the time of
data collection, none were on the transplant wait-
ing list. Length of hemodialysis treatment ranged
from eight to 166 months, with a mean of 48.1. Six
women (23 percent) had been dialysis patients less
than one year, whereas four (15 percent) had been
dialysis patients for 10 years or longer.
Thematic Analysis of Interview Transcripts
Thematic analysis of in-depth interviews was con-
ducted initially without regard to adherence. The
goal of this stage of data analysis was to explore
participants' constructivist perceptions and mean-
ings regarding their illness and treatment experi-
ence. For the sample as a whole, perceptions of
illness reflected two overarching themes: loss and a
heightened awareness of death. A sense of loss was
expressed in a number of forms: loss of personal
freedom, loss of identity because of changes in
body image, loss of functional ability, and associated
losses of independence and ability to maintain social
roles. Heightened aw^areness of death was evident in
participants' accounts of the uncertainty of being
a dialysis patient, the possibility of problems dur-
ing treatment, accounts of observing or learning
of deaths of fellow patients, and having near-death
experiences.
Loss of Personal Freedom. The most prominent
theme in participants' perceptions of the dialysis
treatment regimen was loss of personal freedom
because of the constant, fixed, and demanding treat-
ment regimen. Women used analogies of marriage
and slavery to describe the dominating nature of
their regimen:
I feel like this machine monitors my whole life
. . . it's like I'm married to someone else now.
And that's who decides on everything about
me ... my schedule, my time, what I eat, what I
drink.... It's kinda sad . . . you're controlled by
dialysis... it's really a controlling issue. (Ramona,
45, dialysis patient for 11 months)
* * *
Being on dialysis means being a slave to the
machine ... that makes you feel like you're tied
to the machine.Your first priority is your treat-
ment schedule, before everything else. I can't
do what I want. (Estefana, 36, dialysis patient
for 5 years)
Loss of Identity Because of Changes in Body Im-
age. Changes in body image as a result of physical
changes emerged as an issue threatening women's
identity. Participants described body image concerns
such as skin discoloration, weight loss, and scarring
from surgical creation and repeated use of blood
access sites. Concerns about changes in body image
resulting from renal failure and dialysis treatment are
illustrated in the following statement by Betty, age
43, who had been a dialysis patient for 21 months:
I didn't want it [fistula (arterial-venous graft)]
here [on arm] because I like to wear short sleeves.
236 Social Work VOLUME 54, NUMBER 3 JULY 1009
But I can't now. I'm embarrassed... .And too, I
was always dark . . . but I wasn't ever that dark! I
was dark, but not like this.... And I lost weight
. . . I can't gain weight! . . .The doctor tells me
I'm fme the way 1 am but I want to be fat like
[1 was] before!
Scarring from surgical creation of blood access
sites and repeated needle punctures was a common
concern, especially for younger women. Because of
problems related to prolonged use, one participant's
fistula was no longer functional. However, she was
actively resisting surgery to create a replacement
fistula:
1 don't like the idea of them going to another
limb on my body and making scars on it . . .
because I'm young and 1 don't want to be a
young person walking around with different
scars on different limbs. I don't want to hassle
with trying to hide it all the time. Plus, what
if my [common-law] husband left me? Who's
going to want me with all these scars?(Amanda,
age 30, dialysis patient for nine years)
Loss of Functional Ability, Independence, and
Ability to Maintain Social Roles. Loss of functional
ability because of physical changes associated with
illness and the demands of treatment led women
to express identity losses involving inability to
maintain social roles and relationships. Matilde,
age 51, married for 30 years and a dialysis patient
for 28 months, was emotional as she shared the
following:
Before dialysis, [my husband] and I would walk
... something that I can't do now, at all.. .1 wish
I could walk like I used to, but I can't . . . we
used to go to the movies all the time . . . go to
the lake . . . go to San Antonio . . . walk around.
Now he goes on his own . . . I can't even go
grocery shoppinghe does it.... 1 feel like we're
not as close as we used to be . . . because now,
he does everything on his own. . . . Sometimes
he cries and he tells me,"I miss you! I wish we
could do stuff together like we used to."
Loss of independence as a result of physical limi-
tations was expressed by many women, including
Laura, age 52, a dialysis patient for 12 years who had
recently had a toe amputated:
In my [extended] family, I used to be the one
in charge. . . . I used to be the one that got
everything together but now that I'm in a
wheelchair, I depend on other people to carry
me around . . . that's the biggest change in my
life, that I have to depend on other people. . . .
I used to just get up and go. 1 would clean my
house and run my errands, not only mine, but
I would take my mom and dad to the doctor
or to the store.
Uncertainty of Being a Dialysis Patient. This
theme is illustrated by the following statement by
Carolina, 43, a dialysis patient for six years and the
divorced mother of a 13-year old girl:
I can die anytime. My little girl tells me .. ."Can
we go here, can we go there?" or "What are we
gonna do at Christmas, Mom?" I say, "L, you
don't know! I don't know if 1 might be here
on Christmas!" All of a sudden you can die, you
know.You got to take it day by day. I don't plan
anything ahead of time.
Similarly, Ramona, 45, a dialysis patient for 11
months, stated that
I'm always thinking what kind of life I'm gonna
have. Am I going to be okay? Is dialysis really
going to work for me? Before, I had a very
good attitude about life, but now . . . I worry
constantly . . . I think about my body. Is it going
to be able to keep up and keep going? 1 worry
that I'm not going to be able to go through it
a lot, a long time.
Possibility of Problems duringTreatment. In addi-
tion to being constantly aware of the precariousness
of life for dialysis patients, many women expressed
worries about life-threatening complications or
staff errors during the treatment process:
I have heard [about] a lot of people that died on
dialysis and had strokes on dialysis... Once I sit
down there, I don't know whether I'm gonna
come out alive or dead. (Berta, age 45, dialysis
patient for 18 months)
* * *
I'm afraid they might poke me wrong. And see-
ing the blood flow out of my body scares me
TI J E RI NA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective
237
I think, am I gonna die there or what? (Laura,
32, dialysis patient for 11 months)
Deaths oJ Fellow Patients. Awareness or obser-
vance of the deaths of fellow dialysis patients was
another theme expressed by many participants.
Because dialysis patients are assigned to a particular
treatment "shift" on certain days and times, they
develop relationships with other patients who share
their treatment schedule. Treatment is provided in
large common areas; thus, when a patient experi-
ences treatment complications or is absent, it is
obvious to others. In addition to their concern for
other patients experiencing problems, it is typical for
patients to fear that the same fate awaits them:
There was this little old man sitting across from
me and he died... .And I thought,"Oh! maybe
I'm next!" . . . and then there was another little
lady ... I think she had a stroke there at dialysis
and then she died And I think,"Oh, I wonder
why did they die? What did they do wrong? ...
Maybe I'm next!"(Petra, age 43, dialysis patient
for 13 months)
* * *
There was this one guy.... He looked to me like
he was 20 ... we started dialysis at the same time
... but he was the picture of health! He used to
talk about how he played tennis on the weekend
and I thought, "How can he play tennis? I can't
even hold my head up!"... and he quit coming.
. . . He had died! So I thought, "Well if he died,
I guess maybe I'm next!"(Olga, age 51, dialysis
patient for two years)
Near-Death Experiences. Women's perceptions
of their precarious hold on life were also derived
from their having experienced serious episodes of
illness. Eight women (31 percent) recounted times
when they "almost died," "could have died," or
when physicians told family members that the pa-
tients "should have died." Two w^omen (8 percent)
related that they had been clinically dead on at least
one occasion.
Women who expressed a heightened awareness
of death in relation to uncertainty associated with
being a dialysis patient, concerns with the possibil-
ity of problems during treatment, and observations
of the deaths of fellow patients were just as likely
to be classified as adherent as nonadherent with
treatment. However, those women who reported
near-death experiences were three times as likely
to fall in the nonadherent classification (75 percent,
=6) as compared with the adherent group (25
percent, n =2).
Problems in Family Functioning. Although not
specifically included in the interview schedule, is-
sues related to family emerged as a theme for many
participants. Problems described included marital
conflict (rt =3), conflict between participants and
adult or minor children (n =4), family members
being involved in the criminal or juvenile justice
systems (n = 4), participants being victims of verbal
or emotional abuse by family members ( = 3), and
family involvement with Child Protective Services
(tt =2). Although the numbers were small, women
describing such family problems were clearly dis-
tressed by their particular circumstances, and they
blamed the stress resulting from these situations for
their illness and the problems encountered in their
treatment experience.
Integrated Analysis and Relationships
between Variables
The constructivist findings of this study, obtained
through qualitative data collection and analysis
methods, are the study's primary focus. However,
for purposes of exploring how those constructive
findings relate to the variable of nonadherence,
following the separate analyses of qualitative and
quantitative data, participants were assigned to one
of two groupsadherent or nonadherent. The
group assignment was made on the basis of the
PO^ measure. With the standard PO^ level of 6.0
mg/dL as the cut point for adherence (Bame et al.,
1993), 10 participants (38 percent) were classified
as adherent, and 16 (62 percent) were classified as
nonadherent. As a group, women in the nonadherent
group had a mean PO^ level of 7.4 mg/dL (range
= 6.1 to 9.6 mg/dL) compared with a mean PO^
level of 5.1 mg/dL (range =3.7 to 5.5 mg/dL) for
women classified as adherent.
The constructivist approach of this study and its
small sample size {N = 26) did not meet certain
conditions such as random selection and normal
distribution of variables, so the results did not readily
lend themselves to the use of tests of significance.
Decisions regarding meaningful differences betw^een
the adherent and nonadherent groups were made by
comparing the numbers and percentages of partici-
pants in various categories. Women in both groups
were similar in age, marital status, educational attain-
238 SocialWork VOLUME 54, NUMBER 3 JULY 2009
ment, and language preference; they differed with
respect to poverty status, length of time on dialysis,
family history of ESRD, and immigrant status.
Poverty. Although the entire sample can be de-
scribed as poor, the poorest participants were more
likely to be classified as nonadherent. Of the eight
participants (31 percent) with household incomes
below the poverty line, seven were in the non-
adherent category. Additional poverty indicators
revealed that 10 (83 percent) of the 12 participants
who self-identified as Medicaid recipients and five
of the six women living in public housing were
nonadherent.
Length of Time on Dialysis. Participants with a
longer history of receiving dialysis treatment were
also more likely to be in the nonadherent group.
Women in this category had been receiving dialysis
treatment more than twice as long as those in the
adherent category (Ms = 58.6 months and 25.5
months, respectively).
Family History of ESRD. Women with a family
history of renal failure were also more likely to be
nonadherent (six, compared with three adherent).
Participants identified parents, grandparents, and
siblings as ESRD or dialysis patients.
Immigrant Status. All of the immigrant women
in the sample (w = 5) were classified as adherent.
As a group, they were younger (median age of 37
years, compared with 50 for nonimmigrant women
in the adherent group) and less educated (median
of eight years of schooling, compared with 11.6
years for nonimmigrants) than other adherent
women. Although the numbers were too small for
meaningful comparison, the data suggest that im-
migrant women were more likely to be poor than
nonimmigrant women but had been on dialysis
about equally as long as nonimmigrant women in
the adherent category (Ms = 24 months and 27
months, respectively).
Constructimst Themes. With regard to the qualita-
tive findings of how women construct knowledge
and meaning around their illness and treatment
experience, few differences were observed between
the adherent and nonadherent groups. Participants
across the board expressed perceptions of loss
loss of personal freedom, loss of functional ability,
and associated losses of independence and abihty
to maintain social roles. The exception was loss of
identity as a result of altered body image, which
was more frequently expressed by women in the
nonadherent group.
Similarly, participants in general expressed a
heightened awareness of death through their ac-
counts of the uncertainty of being a dialysis patient,
the possibility of something going wrong during
treatment, and observing or learning of deaths of
fellow patients. Women who described their own
near-death experiences, however, were more likely
to be nonadherent.
DISCUSSION
Mexican American women were selected as the fo-
cus of this study because of their high risk of ESRD
and consequent dialysis treatment and because this
group has been relatively neglected in the research
literature. Nevertheless, limiting the current study to
Mexican American women precluded the possibility
of attributing findings specifically to gender-specific
or culturally specific patterns or factors. A second
limitation of the study was its cross-sectional design.
Although treatment adherence was conceptualized
as the product of dynamic processes occurring over
time, the study design did not allow for examina-
tion of changes in participants' adherence behavior
over time.This is particularly unfortunate given the
findings suggesting that greater length of time on
dialysis affects nonadherence. Because participants'
perceptions were obtained at only one point in time,
the study design did not allow for exainination of
shifts in individual participants' perceptions over
time, nor did it capture information about transi-
tory factors that may have influenced participants
at the time of data collection. Because participants'
dialysis treatment histories differed, their percep-
tions were captured at very different points in their
illness trajectories.
Although the findings offer a preliminary view
of adherence behavior at different stages of the iO-
ness experience, the differences in time on dialysis,
and other variables (such as age distribution and
generational status), made for a very heterogeneous
sample. Given the small sample size, this heterogene-
ity limits the possibility of attributing differences in
patterns observed to variations in particular vari-
ables. Nevertheless, from a qualitative perspective, a
heterogeneous sample can be useful in uncovering
multiple realities (Kuzel, 1992).
The low socioeconomic status of the sample is
consistent with the significantly lower income re-
ported for Mexican Americans as a group (DeNavas-
Walt, Cleveland, & Webster, 2003) and the lower in-
come levels previously reported for Hispanic dialysis
TI J ERI NA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective
239
patients (Bame et al., 1993;Loghman-Adhani,2003).
Poverty may afect adherence behavior because of its
relationship to buying power. Costs of medications
and recommended foods are high, leading patients
to make trade-oifs in their use of limited resources.
For example, beans, economical and a staple of the
Mexican American diet, are highly restricted in the
dialysis treatment regimen because of their high
phosphate content.
The finding that women who had been on
dialysis longer were more likely to be nonadher-
ent is consistent with previous adherence research
indicating that longer duration of treatment is
generally associated with a greater likelihood of
nonadherence (Cameron, 1996;Haynes et al., 1979).
However, among dialysis patients, research on the
relationship between length of time on dialysis and
adherence has been inconsistent (Hailey & Moss,
2000), possibly because of the different measures of
adherence used. The findings of the present study
may reflect a general tendency of ESRD patients to
become more lax in sustaining dietary restrictions
and medication schedules over time.
Women's perceptions of identity loss as a result of
altered body image may reflect the issues of illness
identity described by Charmaz (1999). Although
this relationship has not been studied with regard
to dialysis patients or Mexican American women,
research with other groups suggests that concerns
about body image can contribute to loss of corre-
sponding valued identities (Charmaz, 1995;MiUen &
Walker, 2001), with women being more likely than
men to fear loss of attractiveness and relationships.
The finding that women who themselves had
near-death experiences were more likely to be
nonadherent is ambiguous. Nehemkis and Gerber
(1986) attributed dialysis patients'nonadherence to
ambivalence toward living and, thus, toward treat-
ment. However, it is certainly possible that women's
near-death experiences were the result of their
nonadherence. Because this constructivist finding
emerged from the in-depth interviews and was not
systematically examined, it is not possible to make
assumptions about the causal order between near-
death experiences and nonadherence.
Likewise, because family functioning was not
systematically examined in the present study, it is
not clear whether the family problems described
preceded the illness or had evolved as a function of
the illness's impact on the family system. Hemo-
dialysis patients and their families are faced with a
totally different way of living; family life becomes
centered on the patient's treatment schedule, and
the family is threatened by decreased financial sta-
tus, unemployment, lifestyle changes, altered social
and family roles, and decreased ability to fulfill
long-range life goals. Although psychosocial factors
strongly influence how patients adjust to dialysis,
social work interventions can affect patients' psy-
chosocial situations and enhance patient outcomes
(Dobrof, Dolinko, Lichtiger, Uribarri, & Epstein,
2001), supporting continuation of federal regula-
tions mandating involvement of social workers in
dialysis treatment teams. Nevertheless, the literature
regarding family needs of dialysis patients and the
influence of family dysfunction on treatment adher-
ence is unclear.
IMPLICATIONS FOR SOCIAL WORK
The present study suggests that a social constructivist
approach is useful for social workers in understand-
ing how Mexican American women make mean-
ing of their realities as dialysis patients. Unlike the
biomdical approaches that have dominated the
literature on illness management, with their reduc-
tionistic and practitioner-oriented perspectives, the
social constructivist paradigm is highly compatible
with social work values and precepts. The concept
of knowledge construction occurring within the
social context is synonymous with the person-
in-environment (Germain & Gitterman, 1987)
approach that is of paramount importance to the
practice of social work. This principle views people
as continually shaping, and being shaped by, their
environments. Furthermore, with its aim of under-
standing how people construct their own realities
and meanings of what is important, the social con-
structivist perspective fosters the social work precept
of starting where the client is (Goldstein, 1983). As
Perlman (1957) noted, a client's problem can only
be taken hold of from where he or she stands.Thus,
the social constructivist perspective presents a valu-
able framework for informing social work practice
with this special population of Mexican American
dialysis patients. The socially constructed realities
that women described in this study included pov-
erty, family dysfunction, loss of personal freedom,
identity changes involving altered body image and
social roles, and a heightened awareness of death. In
addition to being sources of much stress, such fac-
tors may negatively affect women's decisions about
treatment adherence.
240 SocialWork VOLUME 54, NUMBER 3 JULY 2009
With their systems perspective, social workers
are uniquely suited to meet many of the service
needs suggested by the findings of this study. Social
workers can assist dialysis patients and their families
in identifying relevant community resources and ac-
cessing needed services such as financial assistance,
housing, transportation, income maintenance, and
mental health services. Furthermore, as members
of the multidisciplinary dialysis team in traditional,
biomedicaUy oriented dialysis settings, social workers
are in a unique position to advocate for the psycho-
social needs of dialysis patients and their families.
Social workers can use the social constructivist ap-
proach to help health care staff understand how the
social context contributes to a patient's construction
of knowledge and meaning, which in turn shapes
behavior, and accept the reality that patient non-
adherence may reflect preoccupation with those
social constructions rather than simply an attitude
of rebelliousness or indifference.
CONCLUSION
ESRD and its treatment is a growing problem,
disproportionately affecting people of color, includ-
ing Mexican American women, a population often
overlooked in the literature. A common problem
among dialysis patients, treatment nonadherence
has been the subject of much past research, mostly
from a traditional, biomdical perspective that fo-
cuses on the performance of a complex, demanding
treatment regimen.The present study suggests that a
constructivist framework can enhance understand-
ing of treatment nonadherence by considering the
culture and context within which it occurs. Addi-
tional research from a constructivist perspective is
needed, particularly with ethnic or racial minority
populations experiencing chronic illness. By con-
sidering the total experience of individuals rather
than simply their performance of a narrow set of
prescribed behaviors, the constructivist framework
can help uncover what individuals view as impor-
tant and how their views of reality may influence
their illness behavior. In this way, practitioners can
identify issues and design effective interventions to
address individuals' needs as they are perceived by
the individuals themselves. HSU
REFERENCES
Anderson,J. M., Blue, C, & Lau, A. (1991).Women's
perspectives on chronic illne.ss: Ethnicity, ideology
and restructuring of life. Social Science & Medicine, 33,
101-113.
Bame, S. I., Petersen, N., & Wray, N. P. (1993).Variation
in hemodialysis patient compliance according to
demographic characteristics. Social Science & Medicine,
31, 1035-1043.
Becker, M. H. (1990). Theoretical models of adherence and
strategies for improving adherence. In S.A. Shumaker,
E. B. Schron, & J. K. Ockene (Eds.), Tlxe handbook of
health behavior (pp. 544). New York: Springer.
Blum, L. H. (1985). Beyond medicine: Healing power in
the doctorpatient relationship. Psychooiical Report,
51, 399-427.
Boyer, C. B., Friend, R., Chlouverakis, G., & Kaloyanides,
G. (1990). Social support and demographic factors
influencing compliance of hemodialysis patients.
Journal of Applied Social Psychology, 22, 1902-1918.
Burr,V. (1995). An introduction to social constructivism.
London: Routledge.
Cameron, C. (1996). Patient compliance: Recognition of
factors involved and suggestions for promoting com-
pliance with therapeutic regimens.Jtira/ of Advanced
Nursing, 24, 244-250.
Charmaz, K. (1995).The body, identity and self: Adapting
to impairment. Sociological Quarterly, 36, 657680.
Charmaz, K. (1999). From the "sick role" to stories of self:
Understanding the self in illness. In R.J. Contrada
(Vol. Ed.) & R. D. Ashmore (Series Ed.), Self social
identity and physical healinq. Vol. 2: Self and social identity
(pp. 209-239). New York: Oxford University Press.
Christensen,A.J.,Benotsch, E. G.,& Smith,T.W. (1997).
Determinants of regimen adherence in renal dialysis.
In D. S. Gochman (Ed.), Handbook of health behavior
research I: Provider determinants (pp. 231244). New
York: Plenum Press.
Christensen, A.J., Smith,T,Turner, C.W., Holman,J. M.,
Gregory, M. C, & Rich, M. A. (1992). Family sup-
port, physical impairment, and adherence in hemo-
dialysis: An investigation of pain and buffering effects.
Journal of Behavioral Medicine, 15, 313325.
Corbin,J. M., & Strauss, A. (1988). Unending work and care.
San Francisco: Jossey-Bass.
Cottone, R. R. (2007). Paradigms of counseling and
psychotherapy, revisited.Jour/w/ of Mental Health
Counseling, 29, 189-203.
DeNavas-Walt, C, Cleveland, R.W., & Webster, B. H.,Jr.
(2003, September). Income in the United States: 2002.
Retrieved June 6, 2004, from http://www.census.
gov/prod/2003pubs/p60-221 .pdf
DiMatteo, M. R., & DiNicola, D. D. (1982). Achieving pa-
tient compliance:'riie psychology of the medical practitioner's
role. New York: Pergamon Press.
DobrofJ., Dolinko, A., Lichtiger, E., Uribarri,J., &
Epstein, I. (2001). Dialysis patient characteristics and
outcomes:The complexity of social work practice
with the end-stage renal disease population. Social
Work in Health Care, 33(3/4), 105-128.
Ell, K. (1996). Social networks, social support and coping
with serious illness:The family connection. Social
Science and Medicine, 42, 173183.
Fishman, B. M., Bobo, L., Kosub, K., & Womeoda,J. (1993).
Cultural issues in serving minority populations:
Emphasis on Mexican-Americans and African-
Americans. American Journal of the Medical Sciences,
306, 160-166.
Gerber, K. (1986). Compliance in the chronically ill: An
introduction to the problem. In K. E. Gerber &
A. M. Nehemkis (Eds.), Compliance:Tlie dilemma of the
chronically ill (pp. 1223). New York: Springer.
Germain, C. B., & Gitterman,A. (1987). Ecological per-
spective. In A. Minahan (Ed.-in-Chief), Encyclopedia
of social work (18th ed.. Vol. 1, pp. 488-489). Silver
Spring, MD: National Association of Social Workers.
TIJERINA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective 241
Goldstein, H. (1983). Starting where the client is. Social
Casework, 64, 267-275.
Hailey, B. J., & Moss, S. B. (2000). Compliance behaviour
in patients undergoing haemodialysis:A review of the
literature. Psychology, Health and Medicine, 5, 395-406.
Haynes, R. B.,Taylor, D.W., & Sackett, D. L. (1979).
Compliance in health care. Baltimore: Johns Hopkins
University Press.
Hener.T, Weisenberg, M., & Har-Even, D. (1996).
Supportive versus cognitive-behavioral intervention
in achieving adjustment to home peritoneal kidney
dialysis. JoMmfl/ of Counseling & Clinical Psychology, 64,
731-741.
Kaplan, R. M., & Simon, H.J. (1990). Compliance in
medical care: Reconsideration of self-predictions.
Annals of Behavioral Medicine, 12, 6671.
Karoly, R (1993). Enlarging the scope of the compli-
ance construct: Toward developmental and motiva-
tional relevance. In N. A. Krasnegor, L. Epstein, S. B.
Johnson, & S.J.Yaffee (Eds.), Developmental aspects of
health compliance behavior (pp. 11-27). Hillsdale, NJ:
Lawrence Erlbaum Associates.
Kuzel.A.J. (1992). Sampling in qualitative inquiry. In
B. E Crabtree &W. L. Miller (Eds.), Doing qualita-
tive research (pp. 31-44). Newbury Park, CA: Sage
Publications.
Lafayette, R.A. (1995). Preventing disease progression in
chronic renal failure. American Family Physician, 52,
1783-1791.
Leggat,J. E. J r , Orzol, S. M., Hulbert-Shearon,T. E.,
Golper,T.A.Jones, CA. , Held, P.J., & Port, E K.
(1998). Noncompliance in hemodialysis: Predictors
and survival analysis. American Journal of Kidney
Diseases, 32, 139-145.
Lo, R. (1999). Correlates of expected success at adherence
to health regimen of people with IDDM. Journal of
Advanced Nursing, 30, 418-424.
Loghman-Adham, M. (2003). Medication noncompliance
in patients with chronic disease: Issues in dialysis and
renal transplantation. American Journal of Managed
Care, 9, 155-171.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data
analysis:An expanded somcehook (2nd ed.).Thousand
Oaks, CA: Sage Publications.
Millen, N., & Walker, C. (2001). Overcoming the stigma
ofchronic illness: Strategies for normalization of a
"spoiled identity." Health Sociology Review, 10, 8997.
Nehemkis, A. E., & Gerber, K. E. (1986). Compliance
and the quality of survival. In K. E. Gerber & A. M.
Nehemkis (Eds.), Compliance:Tlie dilemma of the
chronically ill (pp. 7395). New York: Springer.
Paes,A.H.P,Bakker,A.,& Soe-Agnie, C.J. (1997). Impact
of dosage frequency on patient compliance. Diabetes
Care, 20, 1512-1517.
Perlman, H. H. (1957). Social casework:A problem-solving
process. Chicago: University of Chicago Press.
Pugh,J. A., Medina, R. A., Cornell, J. C, & Basu, S. (1995).
NIDDM is the major cause of diabetic end-stage
renal disease: More evidence from a tri-ethnic com-
munity Diabetes, 44, 1375-1481.
Schwab,T, MeyerJ., & Merrell, R. (1994). Measuring at-
titudes and health beliefs among Mexican Americans
with diabetes. Diabetes Educator, 20, 221-227.
Sensky,T., Leger, C, & Gilmour, S. (1996). Psychosocial
and cognitive factors associated with adherence to
dietary and fluid restriction regimens by people on
chronic hemodialysis. Psychotherapy and Psyclwsomatics,
65, 36-42.
Smedley, B. D., Stith, A.Y., & Nelson,A. R. (2002).
Unequal treatment: Confronting racial and ethnic
disparities in health care. Washington, DC: National
Academies Press.
TrostleJ. A. (1988). Medical compliance as an ideology.
Social Science and Medicine, 21, 1299-1308.
U.S. Department of Health and Human Services, (n.d.).
Poverty guidelines, research, and measurement. Retrieved
April 10,2007, from http://aspe.hhs.gov/poverty/
index.shtml
U.S. Renal Data System. (2005). USKDS 2005 Annual
Data Report. Bethesda, MD: National Institute of
Diabetes and Digestive and Kidney Diseases, National
Institutes of Health, and U.S. Department of Health
and Human Services.
Mary S.TiJerina, PhD, is associate professor. School of Social
Work, Texas State Uniuersity-San Marcos, 601 University
Drive, San Marcos,TX 78666;e-mail: mary.tijerina@txstate.
edu.
Original manuscript received IVIay 3, 2007
Final revision received January 29, 2009
Accepted February 3, 2009
er250tt0BS;
Instant'Certificates''', .:<v
Methamphetamine Abuse
CME Resource, UI092. is approved as
a provider for social work continuing
education by the Association ofSociat
Work Boards (ASWB) 400 South Ridge
Parkway, Suite B, Culpeper, VA 22701.
www.aswb.org. ASWB Approval Period:
3/13/2007 to 3/13/2010. Social workers
should contact their regulatory board to
detertnine course approval.
800.232.4238 Continuing Education Online
242 SocialWork VOLUME 54, NUMBER 3 JULY 2009