Mexican American Women'sAdherence to Hemodialysis Treatment:

A Social Constructivist PerspectiveMary 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 diabeticrenal functioning. The leading treatment for ESRD is hemodialysis, an intensive, complextreatment regimen associated with high levels of patient nonadherence. Previous studies ofpatient adherence have adopted a biomédical, practitioner-oriented approach focused onperformance of fixed behaviors and ignoring contextual and motivational factors.The authordescribes a social constructivist approach to understanding how female Mexican Americandialysis patients experience their disease, the treatment regimen, and the consequences ofthatexperience. Mexican American women's perceptions and psychosocial factors were examinedto understand what these women viewed as important to their realities as dialysis patients.Poverty, longer treatment history, and immigrant status emerged as factors that appearedto influence treatment nonadherence. Perceived identity losses, heightened awareness ofmortality, and family dysfunction emerged as themes that participants viewed as preeminentin their day-to-day lives. A social constructivist perspective is highly compatible with socialwork principles of person-in-environment and starting where the client is. This perspectiveprovides a valuable framework for informing social work practice with this special populationof Mexican American dialysis patients.

KEY WO1Í.DS: chronic illness; hemodialysis; Mexican American;patient adherence; women

Genetic predisposition, lifestyle risks, en-vironmental Stressors, and unequal accessto health care are among the factors con-

tributing to a growing prevalence of chronic illnessamong racial and ethnic minorities in the UnitedStates. In the absence of a cure, chronic conditionsare medically managed through treatment regimensaimed at slowing or stopping disease progression andpreventing complications related to the condition.Such regimens typically involve self-administeredactions, including following medication schedules,making lifestyle changes (for instance, dietarychanges, exercise), and reporting for prescribedtreatment sessions. Unfortunately, whenever peopleare given responsibility for implementing prescribedtreatments, nonadherence is common. Failure toadhere to treatment recommendations is a seriousproblem; it can jeopardize an individual's survival,complicate the illness condition, reduce quality oflife, and require additional medical intervention, in-creasing physical and fmancial costs to the individualand increasing demand on health care resources.The

extent of the problem is difficult to assess, primarilybecause measures of nonadherence vary dependingon the particular treatment regimen. Neverthe-less, the pervasiveness of the problem is evidentin research fmdings indicating that only one-thirdof patients correctly follow physicians' directions(Becker, 1990). Research on treatment adherencetraditionally has reflected a biomédical approach,focusing on the extent to which individuals followa prescribed set of actions, with scant attention tothe context of behavior or the phenomenologicaland psychosocial concerns of people suffering fromchronic illness. As a result, traditional nonadherenceresearch has been criticized as reductionistic, uni-dimensional, practitioner-oriented, and ignorant ofmotivational factors (Corbin & Strauss, 1988;Karoly,1993; Trostle, 1988). Studies of treatment nonadher-ence that focus on how patients experience theirillness, treatment regimen, and adherence behaviorare limited. The present study seeks to address thisresearch gap and the relative neglect in the literatureof the population of Mexican American women. A

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social constructivist approach is adopted to explorethe cognitive, phenomenological, and psychosocialfactors influencing Mexican American women'sadherence to the hemodialysis treatment regimen.

MEXICAN AMERICANS, END-STAGE RENALDISEASE, AND HEMODIALYSISPrimarily because of a higher incidence of type IIdiabetes (Pugh, Medina, Cornell, & Basu, 1995)and higher rates of complications from diabetes,Mexican Americans in the United States have asmuch as a six-times greater risk of end-stage renaldisease (ESRD) than non-Hispanic white Ameri-cans (Schwab, Meyer, & Merrell, 1994). AdditionalES1\D risk factors for Mexican Americans includepoorer adherence to treatments for diabetes andhypertension (Pugh et al., 1995); lower educationallevels (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 thataffects almost every aspect of a person's life. Physicalsymptoms include fatigue and weakness, decreasedalertness, memory loss, and impaired thoughtprocesses (Hener,Weisenberg, & Har-Even, 1996).Inability to maintain employment is common,often resulting in fmancial pressures and lifestylemodifications. Changes in family and social rolesmay also occur as a result of employment restrictionsand inability to perform usual roles in the home.Feelings related to loss, dependency, disability andissues related to death and dying are among thepsychological challenges often faced by peoplewith ESRD.

The leading treatment modality for people withESRD is hemodialysis, accounting for approxi-mately 92 percent of all people undergoing renalreplacement therapy (U.S.Renal Data System,2005).Hemodialysis treatment sessions average four hoursin length and typically are performed three timesa week. In addition to undergoing this mechanicalcleansing of the blood, patients must also maintaindemanding medication schedules and severe fluidand dietary restrictions as compensation for theirkidneys' inabihty to excrete fluids and wastes (Bame,Petersen,&Wray, 1993).The hemodialysis regimenhas many characteristics that have been associatedwith 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 requirementof changes in lifestyle or habitual behaviors (Kaplan& Simon, 1990).

PATIENT NONADHERENCEThe issue of patient nonadherence has been thesubject of much research from a variety of disciplin-ary perspectives. Biomedically oriented studies oftreatment nonadherence have focused on four majorareas: patient characteristics, illness characteristics,characteristics of the treatment regimen, and thephysician-patient relationship. Although research onpatient characteristics associated with nonadherencehas been largely inconclusive, among dialysis patients,younger patients are more likely to be nonadherent(Bame et al., 1993; Leggat et al., 1998). Researchon characteristics of the treatment regimen sug-gests some relationship to nonadherence.The moreintense (for example, higher number of treatments,greater frequency of dosage) and complex the totalregimen, the more likely it is to lead to nonadher-ence (Haynes et al., 1979; Paes,Bakker,& Soe-Agnie,1997).The hemodialysis regimen, with its frequentand extended treatment sessions, dietary restrictions,and complex medication schedules, is among themost intense and complex of treatment regimens.Studies focusing on the physician-patient relation-ship have identified such issues as communicationproblems, lack of shared meanings, and unequal socialor power status. Beyond the basic difl iculty of com-municating information, lack of English languageskills can also exclude ethnic minority patients fromthe 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) .Variablesidentified in this literature include psychodynamicprocesses, sociocultural factors, and cognitive factors,including locus of control, health beliefs, and causalattributions (Becker, 1990; Sensky, Leger, & Gilmour,1996). Factors associated with nonadherence includepatients' feelings related to illness and dying (Blum,1985; Nehemkis & Gerber, 1986), patients' senseof physical and emotional vulnerability (DiMatteo8c DiNicola, 1982), social support (Ell, 1996; Lo,1999), poverty, and reduced access to health care(Fishman, Bobo, Kosub, & Womeoda, 1993). Senskyet al. (1996) found that nonadherent behavior waspredicted 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 poorsocial adjustment.

Research on nonadherence has been complicatedby disagreement on what exactly constitutes nonad-herence and how it should be measured. Measuresused in nonadherence studies have included missedmedical appointments, failure to take medicationsas prescribed, and failure to make recommendedlifestyle 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 biochemicalanalyses. For hemodialysis patients, adherence tra-ditionally has been measured objectively in threeareas: medication taking, fluid intake, and dietaryrestrictions (Bame et al., 1993). Studies focusing onhemodialysis patients have estimated that between30 percent and 70 percent of patients are nonadher-ent with medications, 25 percent to 80 percent donot comply with fluid restrictions, and between 15percent and 50 percent do not comply with dietaryrestrictions (Bame et al., 1993). Christensen et al.(1992) found that dialysis patients' perceptions offamily support were related to fluid intake adherencebut not to dietary restrictions, and Boyer, Friend,Chlouverakis, and Kaloyanides (1990) found thathigher levels of family support were associated withlow serum potassium and phosphate levels. Clearly,patient nonadherence is a pervasive problem amonghemodialysis patients; however, studies of femaleMexican American dialysis patients are scant.

CONCEPTUAL FRAMEWORK ANDRESEARCH QUESTIONSocial constructivism is a complex perspective, lack-ing clear consensus in terms of its defmition; how-ever, there are certain general concepts associatedwith this approach. Social constructivism proposesthat what is known or understood is the result ofprocesses within communities of understandingrather than of individuals operating as isolatedentities. In other words, an understanding of whatoccurs in society and the knowledge that is built onthis understanding come from a process of mutualagreement linked to the traditions, language, andculture of a community (Cottone, 2007).The con-struction of knowledge, then, occurs within cultureand context and involves interpersonal processes.According to Burr (1995), social constructivismchallenges "taken-for-granted" knowledge and theway in which it becomes accepted as truth. Social

constructivism assumes that people have different"versions" of reality that depend on their particularcommunities of understanding. People s realities areestablished as "truths" through social processes andthe interactions people have with others' versionsof reality. What people come to believe togetherbecomes absolutely true or real in their communities(Cottone, 2007). Finally, assuming that knowledgeand social action go hand in hand, it stands to reasonthat different versions of reality will lead to differentpatterns of social action (Burr, 1995).The social con-structivist perspective thus aims to understand howpeople construct their own realities and meaningsof what is important as opposed to understandingsome external, independent reality.

The social constructivist perspective was adoptedfor the present study, which had the following re-search question: How do Mexican American womenundergoing dialysis treatment understand and makemeaning of their illness and the treatment regimen,and do these constructions influence treatment ad-herence? Guided by this approach, the study soughtto explore the psychosocial, cognitive, and culturalfactors most salient in shaping the adherence behav-ior of this underrepresented population.

METHOD

Selection of ParticipantsThe study sample consisted of 26 Mexican Americanwomeri receiving hemodialysis treatment in eightoutpatient dialysis clinics operating in central Texas.Purposive sampling was used to identify women whowere between the ages of 30 and 55, were residingin private homes (that is, not residing in nursinghomes), and had spent a minimum of six monthsin hemodialysis treatment.The rationale for the ageand residence criteria was that women with thesecharacteristics were more likely to have responsibilityfor tasks related to dietary practices (meal planning,grocery shopping, and cooking).The time require-ment was based on the assumption that a six-monthperiod is sufficient to allow stabilization of physi-ological functioning and adequate experience of thetreatment regimen. Dialysis social w^orkers at eachof the participating clinics facilitated access to thepopulation and brokered initial contacts betweenthe researcher and potential participants.

Data CollectionData were collected using three methods: (1) anorally 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 obtainedfrom dialysis clinic records. At initial contact, theresearcher estabHshed participants' language prefer-ence (English or Spanish) and obtained informedconsent. Consenting participants completed a brief,oral survey that gathered demographic and medicalhistory information. In-depth narrative interviewswere scheduled at the end of the initial contact andsubsequently conducted in participants' homes. Asemistructured interview schedule explored wom-en's knowledge, perceptions, and realities concern-ing such variables as knowledge and beliefs aboutESRD and hemodialysis, the illness and treatmentexperience and meanings, and motivations and sup-ports. Interviews were audiotaped for subsequenttranscription and analysis. Interviews conducted inSpanish were transcribed in Spanish.The transcriptswere then translated into English for purposes ofanalysis. Reverse translation was used to ensure fidel-ity and accuracy of translation. Interviews averagedtwo hours in length and were conducted prior tothe coüection of treatment adherence data to avoidresearcher bias in the interview process.

The third and fmal stage of data collectiongathered information from participants' treatmentrecords, specifically serum phosphate (PO^), themeasure of adherence selected for this study. Levelof PO^was selected as the measure of treatment ad-herence because it can indicate both diet adherenceand medication adherence (Bame et al., 1993;Leggatet al., 1998). Although nonadherence is often por-trayed as a dichotomous, static concept, such a viewfails to recognize that nonadherence is a dynamicphenomenon, affected by shifts in an individual'semotional, cognitive, and rational processes and byenvironmental changes. To allow for variation inadherence behavior, a time-series approach to itsmeasurement was selected over a cross-sectionalapproach. Participants' PO^ levels were collectedmonthly during two time periods: the three-monthperiod preceding the date of the in-depth interviewand the seventh through ninth months precedingthe interview.The six values were averaged to yielda mean monthly PO^ value for each participant.For purposes of examining resulting themes in theconstructivist findings for the dependent variable ofadherence, participants were classified into one oftwo groups: (1) adherent—those 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 consistentwith the Health Care Financing Administrationquality review standards for dialysis treatment (Bameet al., 1993).

Data AnalysisAnalysis of data involved three stages: (1) thematicanalysis of interview transcripts, (2) descriptiveanalysis of quantitative data from clinic records andclosed-ended responses to survey and interviewitems, and (3) an integrative analysis of the descriptiveand constructivist findings on adherence.Thematicanalysis of the interview transcripts was approachedfrom the social constructivist perspective. Analysisbegan with a "start list" (Miles & Huberman, 1994)or template consisting of major codes, subcodes, andcategories of anticipated responses derived fromtheory, preexisting knowledge of the hemodialysisregimen and Mexican American culture, and reviewof the transcripts from a pilot test. Revisions to theoriginal start list were made on the basis of readingsof the transcripts and recognition of meaningfulthemes in the data. As analysis proceeded, newcodes and categories were identified, incorporatedinto the template, and systematically reapplied to thetranscripts in an iterative process. Once the final listof codes was applied to the transcripts, pattern cod-ing (Miles Sc Huberman, 1994) was used to surfacecommon themes across cases. Member checking byparticipants was used to establish confirmability ortrustworthiness.

FINDINGSDescriptive Analysis of Quantitative DataDemographic Characteristics of the Sample. Thesample (iV = 26) ranged in age from 30 to 56 years,with a median age of 44.8. The majority of thewomen (73 percent; « = 19 were third-generation(grandchildren of immigrants) residents of theUnited States; six (23 percent) were immigrants orfirst-generation residents. Over half of the sample(58 percent; « = 15) preferred to communicate inEnglish. Four (15 percent) participants spoke ex-clusively Spanish; three (12 percent) of these wereimmigrants. Although 46 percent of the sample («= 12) had graduated from high school, more thanone-third (n = 9) had completed fewer than nineyears of formal education. Only one (4 percent)participant had a college degree. Eighty-two percentof the participants (n = 23) lived in households withat 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, andone-half of the participants (n = 13) had at least oneminor child living in the home.

Although all participants appeared willing toreport household income, six women (33 percentof the sample) reported that they did not know theamount earned by their husbands or other members(sons, brothers) of their households. Thus, incomedata 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) reportingincomes below $12,000 and eight participants (31percent) reporting household incomes below thepoverty line (U.S. Department of Health and HumanServices, n.d.). As additional indicators of poverty,35 percent of participants (n = 8) were receivingfood stamps, and 23 percent (n = 6) were residingin public housing. Only three (12 percent) of thewomen 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 theiremployment either at the time of or shortly beforebeginning dialysis treatment.

The majority of participants (69 percent, « = 18)had developed ESRD as a consequence of diabetes;five (19 percent) women reported that they didnot know the cause of their renal failure. One-half of the participants reported a family historyof the particular underlying condition to whichthey attributed their ESRD, and nine (35 percent)women had family members who had received orwere receiving hemodialysis. For all but one of theparticipants, hemodialysis was the only treatmentmodality experienced. Although a few of the womenexpressed interest in transplantation, at the time ofdata collection, none were on the transplant wait-ing list. Length of hemodialysis treatment rangedfrom eight to 166 months, with a mean of 48.1. Sixwomen (23 percent) had been dialysis patients lessthan one year, whereas four (15 percent) had beendialysis patients for 10 years or longer.

Thematic Analysis of Interview TranscriptsThematic analysis of in-depth interviews was con-ducted initially without regard to adherence. Thegoal 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 ofillness reflected two overarching themes: loss and aheightened awareness of death. A sense of loss wasexpressed in a number of forms: loss of personalfreedom, loss of identity because of changes inbody image, loss of functional ability, and associatedlosses of independence and ability to maintain socialroles. Heightened aw areness of death was evident inparticipants' accounts of the uncertainty of beinga dialysis patient, the possibility of problems dur-ing treatment, accounts of observing or learningof deaths of fellow patients, and having near-deathexperiences.

Loss of Personal Freedom. The most prominenttheme in participants' perceptions of the dialysistreatment regimen was loss of personal freedombecause of the constant, fixed, and demanding treat-ment regimen. Women used analogies of marriageand slavery to describe the dominating nature oftheir 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 aboutme ... my schedule, my time, what I eat, what Idrink.... It's kinda sad ... you're controlled bydialysis... it's really a controlling issue. (Ramona,45, dialysis patient for 11 months)

* * *Being on dialysis means being a slave to themachine ... that makes you feel like you're tiedto the machine.Your first priority is your treat-ment schedule, before everything else. I can'tdo what I want. (Estefana, 36, dialysis patientfor 5 years)

Loss of Identity Because of Changes in Body Im-age. Changes in body image as a result of physicalchanges emerged as an issue threatening women'sidentity. Participants described body image concernssuch as skin discoloration, weight loss, and scarringfrom surgical creation and repeated use of bloodaccess sites. Concerns about changes in body imageresulting from renal failure and dialysis treatment areillustrated in the following statement by Betty, age43, 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, Iwas always dark . . . but I wasn't ever that dark! Iwas dark, but not like this.... And I lost weight. . . I can't gain weight! . . .The doctor tells meI'm fme the way 1 am but I want to be fat like[1 was] before!

Scarring from surgical creation of blood accesssites and repeated needle punctures was a commonconcern, especially for younger women. Because ofproblems related to prolonged use, one participant'sfistula was no longer functional. However, she wasactively resisting surgery to create a replacementfistula:

1 don't like the idea of them going to anotherlimb on my body and making scars on it . . .because I'm young and 1 don't want to be ayoung person walking around with differentscars on different limbs. I don't want to hasslewith trying to hide it all the time. Plus, whatif my [common-law] husband left me? Who'sgoing to want me with all these scars?(Amanda,age 30, dialysis patient for nine years)

Loss of Functional Ability, Independence, andAbility to Maintain Social Roles. Loss of functionalability because of physical changes associated withillness and the demands of treatment led womento express identity losses involving inability tomaintain social roles and relationships. Matilde,age 51, married for 30 years and a dialysis patientfor 28 months, was emotional as she shared thefollowing:

Before dialysis, [my husband] and I would walk... something that I can't do now, at all.. .1 wishI could walk like I used to, but I can't . . . weused to go to the movies all the time . . . go tothe lake . . . go to San Antonio . . . walk around.Now he goes on his own . . . I can't even gogrocery shopping—he does it.... 1 feel like we'renot as close as we used to be . . . because now,he does everything on his own. . . . Sometimeshe cries and he tells me,"I miss you! I wish wecould do stuff together like we used to."

Loss of independence as a result of physical limi-tations was expressed by many women, includingLaura, age 52, a dialysis patient for 12 years who hadrecently had a toe amputated:

In my [extended] family, I used to be the onein charge. . . . I used to be the one that goteverything together but now that I'm in awheelchair, I depend on other people to carryme around . . . that's the biggest change in mylife, that I have to depend on other people. . . .I used to just get up and go. 1 would clean myhouse and run my errands, not only mine, butI would take my mom and dad to the doctoror to the store.

Uncertainty of Being a Dialysis Patient. Thistheme is illustrated by the following statement byCarolina, 43, a dialysis patient for six years and thedivorced mother of a 13-year old girl:

I can die anytime. My little girl tells me .. ."Canwe go here, can we go there?" or "What are wegonna do at Christmas, Mom?" I say, "L, youdon't know! I don't know if 1 might be hereon Christmas!" All of a sudden you can die, youknow.You got to take it day by day. I don't plananything ahead of time.

Similarly, Ramona, 45, a dialysis patient for 11months, stated that

I'm always thinking what kind of life I'm gonnahave. Am I going to be okay? Is dialysis reallygoing to work for me? Before, I had a verygood attitude about life, but now . . . I worryconstantly . . . I think about my body. Is it goingto be able to keep up and keep going? 1 worrythat I'm not going to be able to go through ita lot, a long time.

Possibility of Problems duringTreatment. In addi-tion to being constantly aware of the precariousnessof life for dialysis patients, many women expressedworries about life-threatening complications orstaff errors during the treatment process:

I have heard [about] a lot of people that died ondialysis and had strokes on dialysis... Once I sitdown there, I don't know whether I'm gonnacome out alive or dead. (Berta, age 45, dialysispatient for 18 months)

* * *I'm afraid they might poke me wrong. And see-ing the blood flow out of my body scares me

TIJERINA / 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 wasanother theme expressed by many participants.Because dialysis patients are assigned to a particulartreatment "shift" on certain days and times, theydevelop relationships with other patients who sharetheir treatment schedule. Treatment is provided inlarge common areas; thus, when a patient experi-ences treatment complications or is absent, it isobvious to others. In addition to their concern forother patients experiencing problems, it is typical forpatients to fear that the same fate awaits them:

There was this little old man sitting across fromme and he died... .And I thought,"Oh! maybeI'm next!" .. . and then there was another littlelady ... I think she had a stroke there at dialysisand then she died And I think,"Oh, I wonderwhy did they die? What did they do wrong? ...Maybe I'm next!"(Petra, age 43, dialysis patientfor 13 months)

* * *There was this one guy.... He looked to me likehe was 20 ... we started dialysis at the same time... but he was the picture of health! He used totalk about how he played tennis on the weekendand I thought, "How can he play tennis? I can'teven 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, dialysispatient for two years)

Near-Death Experiences. Women's perceptionsof their precarious hold on life were also derivedfrom their having experienced serious episodes ofillness. Eight women (31 percent) recounted timeswhen they "almost died," "could have died," orwhen 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 leastone occasion.

Women who expressed a heightened awarenessof death in relation to uncertainty associated withbeing a dialysis patient, concerns with the possibil-ity of problems during treatment, and observationsof the deaths of fellow patients were just as likelyto be classified as adherent as nonadherent withtreatment. However, those women who reported

near-death experiences were three times as likelyto fall in the nonadherent classification (75 percent,« = 6) as compared with the adherent group (25percent, n = 2).

Problems in Family Functioning. Although notspecifically included in the interview schedule, is-sues related to family emerged as a theme for manyparticipants. Problems described included maritalconflict (rt = 3), conflict between participants andadult or minor children (n = 4), family membersbeing involved in the criminal or juvenile justicesystems (n = 4), participants being victims of verbalor emotional abuse by family members (« = 3), andfamily involvement with Child Protective Services(tt = 2). Although the numbers were small, womendescribing such family problems were clearly dis-tressed by their particular circumstances, and theyblamed the stress resulting from these situations fortheir illness and the problems encountered in theirtreatment experience.

Integrated Analysis and Relationshipsbetween VariablesThe constructivist findings of this study, obtainedthrough qualitative data collection and analysismethods, are the study's primary focus. However,for purposes of exploring how those constructivefindings relate to the variable of nonadherence,following the separate analyses of qualitative andquantitative data, participants were assigned to oneof two groups—adherent or nonadherent. Thegroup assignment was made on the basis of thePO^ measure. With the standard PO^ level of £6.0mg/dL as the cut point for adherence (Bame et al.,1993), 10 participants (38 percent) were classifiedas adherent, and 16 (62 percent) were classified asnonadherent. As a group, women in the nonadherentgroup 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) forwomen classified as adherent.

The constructivist approach of this study and itssmall sample size {N = 26) did not meet certainconditions such as random selection and normaldistribution of variables, so the results did not readilylend themselves to the use of tests of significance.Decisions regarding meaningful differences betw^eenthe adherent and nonadherent groups were made bycomparing the numbers and percentages of partici-pants in various categories. Women in both groupswere similar in age, marital status, educational attain-

238 SocialWork VOLUME 54, NUMBER 3 JULY 2009

ment, and language preference; they differed withrespect 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 morelikely to be classified as nonadherent. Of the eightparticipants (31 percent) with household incomesbelow the poverty line, seven were in the non-adherent category. Additional poverty indicatorsrevealed that 10 (83 percent) of the 12 participantswho self-identified as Medicaid recipients and fiveof the six women living in public housing werenonadherent.

Length of Time on Dialysis. Participants with alonger history of receiving dialysis treatment werealso more likely to be in the nonadherent group.Women in this category had been receiving dialysistreatment more than twice as long as those in theadherent category (Ms = 58.6 months and 25.5months, respectively).

Family History of ESRD. Women with a familyhistory of renal failure were also more likely to benonadherent (six, compared with three adherent).Participants identified parents, grandparents, andsiblings as ESRD or dialysis patients.

Immigrant Status. All of the immigrant womenin the sample (w = 5) were classified as adherent.As a group, they were younger (median age of 37years, compared with 50 for nonimmigrant womenin the adherent group) and less educated (medianof eight years of schooling, compared with 11.6years for nonimmigrants) than other adherentwomen. Although the numbers were too small formeaningful comparison, the data suggest that im-migrant women were more likely to be poor thannonimmigrant women but had been on dialysisabout equally as long as nonimmigrant women inthe adherent category (Ms = 24 months and 27months, respectively).

Constructimst Themes. With regard to the qualita-tive findings of how women construct knowledgeand meaning around their illness and treatmentexperience, few differences were observed betweenthe adherent and nonadherent groups. Participantsacross the board expressed perceptions of loss—loss of personal freedom, loss of functional ability,and associated losses of independence and abihtyto maintain social roles. The exception was loss ofidentity as a result of altered body image, whichwas more frequently expressed by women in thenonadherent group.

Similarly, participants in general expressed aheightened awareness of death through their ac-counts of the uncertainty of being a dialysis patient,the possibility of something going wrong duringtreatment, and observing or learning of deaths offellow patients. Women who described their ownnear-death experiences, however, were more likelyto be nonadherent.

DISCUSSIONMexican American women were selected as the fo-cus of this study because of their high risk of ESRDand consequent dialysis treatment and because thisgroup has been relatively neglected in the researchliterature. Nevertheless, limiting the current study toMexican American women precluded the possibilityof attributing findings specifically to gender-specificor culturally specific patterns or factors. A secondlimitation of the study was its cross-sectional design.Although treatment adherence was conceptualizedas the product of dynamic processes occurring overtime, the study design did not allow for examina-tion of changes in participants' adherence behaviorover time.This is particularly unfortunate given thefindings suggesting that greater length of time ondialysis affects nonadherence. Because participants'perceptions were obtained at only one point in time,the study design did not allow for exainination ofshifts in individual participants' perceptions overtime, nor did it capture information about transi-tory factors that may have influenced participantsat the time of data collection. Because participants'dialysis treatment histories differed, their percep-tions were captured at very different points in theirillness trajectories.

Although the findings offer a preliminary viewof adherence behavior at different stages of the iO-ness experience, the differences in time on dialysis,and other variables (such as age distribution andgenerational status), made for a very heterogeneoussample. Given the small sample size, this heterogene-ity limits the possibility of attributing differences inpatterns observed to variations in particular vari-ables. Nevertheless, from a qualitative perspective, aheterogeneous sample can be useful in uncoveringmultiple realities (Kuzel, 1992).

The low socioeconomic status of the sample isconsistent 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

TIJERINA / Mexican American Women's Adherence to Hemodialysis Treatment: A Social Constructivist Perspective 239

patients (Bame et al., 1993;Loghman-Adhani,2003).Poverty may aífect adherence behavior because of itsrelationship to buying power. Costs of medicationsand recommended foods are high, leading patientsto make trade-oifs in their use of limited resources.For example, beans, economical and a staple of theMexican American diet, are highly restricted in thedialysis treatment regimen because of their highphosphate content.

The finding that women who had been ondialysis longer were more likely to be nonadher-ent is consistent with previous adherence researchindicating that longer duration of treatment isgenerally associated with a greater likelihood ofnonadherence (Cameron, 1996;Haynes et al., 1979).However, among dialysis patients, research on therelationship between length of time on dialysis andadherence has been inconsistent (Hailey & Moss,2000), possibly because of the different measures ofadherence used. The findings of the present studymay reflect a general tendency of ESRD patients tobecome more lax in sustaining dietary restrictionsand medication schedules over time.

Women's perceptions of identity loss as a result ofaltered body image may reflect the issues of illnessidentity described by Charmaz (1999). Althoughthis relationship has not been studied with regardto dialysis patients or Mexican American women,research with other groups suggests that concernsabout body image can contribute to loss of corre-sponding valued identities (Charmaz, 1995;MiUen &Walker, 2001), with women being more likely thanmen to fear loss of attractiveness and relationships.

The finding that women who themselves hadnear-death experiences were more likely to benonadherent is ambiguous. Nehemkis and Gerber(1986) attributed dialysis patients'nonadherence toambivalence toward living and, thus, toward treat-ment. However, it is certainly possible that women'snear-death experiences were the result of theirnonadherence. Because this constructivist findingemerged from the in-depth interviews and was notsystematically examined, it is not possible to makeassumptions about the causal order between near-death experiences and nonadherence.

Likewise, because family functioning was notsystematically examined in the present study, it isnot clear whether the family problems describedpreceded the illness or had evolved as a function ofthe illness's impact on the family system. Hemo-dialysis patients and their families are faced with a

totally different way of living; family life becomescentered on the patient's treatment schedule, andthe family is threatened by decreased financial sta-tus, unemployment, lifestyle changes, altered socialand family roles, and decreased ability to fulfilllong-range life goals. Although psychosocial factorsstrongly 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 indialysis treatment teams. Nevertheless, the literatureregarding family needs of dialysis patients and theinfluence of family dysfunction on treatment adher-ence is unclear.

IMPLICATIONS FOR SOCIAL WORKThe present study suggests that a social constructivistapproach is useful for social workers in understand-ing how Mexican American women make mean-ing of their realities as dialysis patients. Unlike thebiomédical approaches that have dominated theliterature on illness management, with their reduc-tionistic and practitioner-oriented perspectives, thesocial constructivist paradigm is highly compatiblewith social work values and precepts. The conceptof knowledge construction occurring within thesocial context is synonymous with the person-in-environment (Germain & Gitterman, 1987)approach that is of paramount importance to thepractice of social work. This principle views peopleas continually shaping, and being shaped by, theirenvironments. Furthermore, with its aim of under-standing how people construct their own realitiesand meanings of what is important, the social con-structivist perspective fosters the social work preceptof starting where the client is (Goldstein, 1983). AsPerlman (1957) noted, a client's problem can onlybe taken hold of from where he or she stands.Thus,the social constructivist perspective presents a valu-able framework for informing social work practicewith this special population of Mexican Americandialysis patients. The socially constructed realitiesthat women described in this study included pov-erty, family dysfunction, loss of personal freedom,identity changes involving altered body image andsocial roles, and a heightened awareness of death. Inaddition to being sources of much stress, such fac-tors may negatively affect women's decisions abouttreatment adherence.

240 SocialWork VOLUME 54, NUMBER 3 JULY 2009

With their systems perspective, social workersare uniquely suited to meet many of the serviceneeds suggested by the findings of this study. Socialworkers can assist dialysis patients and their familiesin identifying relevant community resources and ac-cessing needed services such as financial assistance,housing, transportation, income maintenance, andmental health services. Furthermore, as membersof the multidisciplinary dialysis team in traditional,biomedicaUy oriented dialysis settings, social workersare 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 thesocial context contributes to a patient's constructionof knowledge and meaning, which in turn shapesbehavior, and accept the reality that patient non-adherence may reflect preoccupation with thosesocial constructions rather than simply an attitudeof rebelliousness or indifference.

CONCLUSIONESRD and its treatment is a growing problem,disproportionately affecting people of color, includ-ing Mexican American women, a population oftenoverlooked in the literature. A common problemamong dialysis patients, treatment nonadherencehas been the subject of much past research, mostlyfrom a traditional, biomédical perspective that fo-cuses on the performance of a complex, demandingtreatment regimen.The present study suggests that aconstructivist framework can enhance understand-ing of treatment nonadherence by considering theculture and context within which it occurs. Addi-tional research from a constructivist perspective isneeded, particularly with ethnic or racial minoritypopulations experiencing chronic illness. By con-sidering the total experience of individuals ratherthan simply their performance of a narrow set ofprescribed behaviors, the constructivist frameworkcan help uncover what individuals view as impor-tant and how their views of reality may influencetheir illness behavior. In this way, practitioners canidentify issues and design effective interventions toaddress individuals' needs as they are perceived bythe individuals themselves. HSU

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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, 2007Final revision received January 29, 2009Accepted February 3, 2009

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242 SocialWork VOLUME 54, NUMBER 3 JULY 2009