A Social Constructivist Perspective

8/11/2019 A Social Constructivist Perspective

1/12

Mexican American Women sAdherence to Hemodialysis Treatm

A Social Constructivist PerspectivMary S TijerinaMexican Am ericans have as much as a six-times greater risk of end-stage renal disease (Ethan non-Hispanic white Americans, and women show a faster rate of dechne inrenal functioning. The leading treatment for ESRD is hemodialysis, an intensive,treatment regimen associated with high levels of patient nonadherence. Previous patient adherence have adopted a biomdical, practitioner-oriented approach foperformance of fixed behaviors and ignoring contextual and motivational factors.Tdescribes a social constructivist approach to understanding how female Mexican dialysis patients experie nce their disease, the treatm ent reg imen, and the consequenexperience. Mexican American wom en s perceptions and psychosocial factors wereto understand what these women viewed as important to their realities as dialysisPoverty, longer treatment history, and immigrant status emerged as factors that to influence treatment nonadherence. Perceived identity losses, heightened awamortality, and family dysfunction emerged as themes that participants viewed as pin their day-to-day lives. A social constructivist perspective is highly compatible with swork principles of person-in-environment and starting where the client is. This perspectiveprovides a valuable framework for informing social wo rk practice w ith this special pof Mexican American dialysis patients.

KEY WO 1.DS: chronic illness; hemo dialysis; Mexican Am erican;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,

li t th ill diti d lit f

extent of the problem is difficult to assessbecause measures of nonadherence vary don the particular treatment regimen. Nless, the pervasiveness of the problem isin research fmdings indicating that only of patients correctly follow physicians d(Becker, 1990). Research on treatment atraditionally has reflected a biomdical focusing on the extent to which individuaa prescribed set of actions, with scant attthe context of behavior or the phenomenand psychosocial concerns of people suffechronic illness. As a result traditional nonadheresearch has been criticized as reductionidimensional, practitioner-oriented, and igmotivational factors (Corbin Strauss, 1988;Ka1993; Trostle, 1988). Studies of treatment nonaence that focus on how patients experieill i d dh


2/12

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

MEX ICAN AMERICAN S 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 trea tment 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 associated

tensen,Benotsch, Smith, 1997), and requirementof changes in lifestyle or habitual behaviors (Kaplan Simon, 1990).

PATIENT NONADHERENCE

The 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. A lthough research onpatient characteristics associated w ith 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 the

most 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 minor ity 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 con trol, 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' sense

of physical and emotional vulnerability (DiMatteo c DiN icola , 1982), social support (Ell, 1996; Lo,1999) d d d h l h


3/12

of control, higher levels of depression, and poorsocial adjustment.

Research on non adherence has been complicatedby disagreement on w hat exactly constitutes no nad -herence and how it should be measured. Measures

used 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 dietary

restrictions (Bame et al., 1993). Studies focusing onhemodialysis patients have estimated that between30 percent and 70 percen t of patients are nonad her-ent w ith 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 ntake adherencebu t not to dietary restrictions, and Boyer, F riend,

Chlouverakis, and Kaloyanides (1990) found thathigher levels of family supp ort w ere associated w ithlow serum potassium and phosphate levels. Clearly,patient nonadherence is pervasive problem am onghemodialysis patients; however, studies of femaleMexican American dialysis patients are scant.

CONCEPTUAL FRAMEWORK NDRESEARCH 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 u nderstanding of whatoccurs in society and the knowledge that is built onthis understanding come from a process of mutualagreement linked to the traditions, language, and

culture of a community (Cottone, 2007).The con-struction of knowledge, then, occurs w ithin culture

d d i l i l

constructivism assumes that people have differe versions of reality that depend on their particulacomm unities of understanding. People s realities areestablished as tru ths through social processes andthe interactions people have with others' versionof reality. W hat people com e to believe togetherbecomes absolutely true or re l in their communitie(Cottone, 2007). Finally, assuming that knowledgand social action go hand in hand, it stands to reasonthat different versions of reality will lead to differepatterns of soci l action (Burr, 1995).The social constructivist 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 adoptefor the present study, which had the following re-search question: How do Mexican American wom eundergoin g dialysis treatment understand and m akmeaning of their illness and the treatment regimeand do these constructions influence treatment ad-herence? Guided by this approach, the study soughto explore the psychosocial, cognitive, and culturafactors m ost salient in shaping the adherence behavior of this underrepresented population.

METHOD

Selection of ParticipantsTh e study s mple consisted of 26 M exican Am ericanwomeri receiving hemodialysis treatment in eightoutpatient dialysis clinics operating in central TexaPurposive sampling was used to identify wom en w howere between the ages of 30 and 55, were residingin private homes (that is, not residing in nursinghomes), and had spent a m inimum of six m onthsin hemodialysis treatm ent.Th e rationale for the agand residence criteria was that women with thescharacteristics were more likely to have responsibilitfor tasks related to dietary practices (meal planninggrocery shopping, and cooking).T he time requirement was based on the assumption that a six-monthperiod is sufficient to allow stabilization of physi-ological functioning and adequate experience of thetreatm ent regim en. Dialysis social w^orkers at eachof the participating clinics facilitated access to the

population and brokered initial contacts betweenthe researcher and potential participants.


4/12

(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. Consen ting participants completed a brieforal 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 con cern -ing such variables as knowledge and beliefs aboutESRD and hemodialysis, the illness and treatmentexperience and m eanings, and m otivations 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 coection 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 m easure 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-m onthperiod preceding the date of the in-dep th 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 ofdh l f d f

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 & Hu berm an, 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 m ade 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 the

transcripts 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. Mem ber checking byparticipants was used to establish confirmability ortrustworthiness.

FINDINGSDescriptive Analysis of Quantitative DataDemographic haracteristics of the Sample The

sample iV = 26) ranged in age from 30 to 56 years,with a median age of 44.8. Th e 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 nine

f f l d i O l (4 )


5/12

nuclear family. Almost half (42 percent, n 11)were married or living with a dom estic partner, andone-ha lf of the participants (n = 13) had at least oneminor child living in the home.

Although all participants appeared willing to

report 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-th ird ( = 9) reportingincomes below 12,000 and eight participants (31percent) reporting household incomes below the

poverty line (U.S. Department of Health and Hum anServices, 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.

Th e 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 been

dialysis patients for 10 years or longer.

Th ti l i f I t i T i t

participants' constructivist perceptions and mings regarding their illness and treatment exence. For the sample as a whole, perceptionillness reflected two overarching themes: loss aheightened awareness of death. A sense of loss wa

expressed in a number of forms: loss of persfreedom, loss of identity because of changebody image, loss of functional ability, and associlosses of independence and ability to maintain sroles. Heigh tened aw^areness of death was evideparticipants' accounts of the uncertainty of ba dialysis patient, the possibility of problems ing treatment, accounts of observing or learof deaths of fellow patients, and having near-dexperiences.

Loss of ersonal Freedom. The most promintheme in participants' perceptions of the diatreatment regimen was loss of personal freebecause of the constant, fixed, and demanding tment regimen. Women used analogies of marrand slavery to describe the dominating naturtheir regimen:

I feel like this machine monitors my whole lif. . . it's like I'm married to someone else nowAnd that's who decides on everything aboume .. . my schedule, my time, what I eat what Id ri nk .. .. It's kinda sad . . . you're controlled bdialysis... it s really a controlling issue. (Ramona,45, dialysis patient for 11 months)

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

Loss of Identity Because of Changes in Body Image. Changes in body image as a result of phychanges emerged as an issue threatening womidentity. Participants described body image concsuch as skin discoloration, weight loss, and scarrinfrom surgical creation and repeated use of blaccess sites. Concerns about changes in body im

resulting from renal failure and dialysis treatm enillustrated in the following statement by Betty,

h h d b d l f


6/12

But I can't now. I 'm em barrassed ... .And too , Iwas always dark . .. bu t I wasn't ever that dark Iwas dark, but not like th is ... . And I lost weight. . . I can't gain weight . . .Th e do ctor tells meI'm fme the way 1 am but I want to be fat like

[1 was] b efore

Scarring from surgical creation of blood accesssites and repeated needle punctures was a commoncon cer n, especially for you nge r wo m en . Because o fproblems related to pro longed use, one part icipant '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 w ant to be ayoung person walking around with differentscars on different limbs. I don't want to hasslewith trying to hide it all the tim e. Plus, wh atif 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 withil lness and the demands of treatment led womento express identi ty losses involving inabil i ty tomaintain social roles and relat ionships. Matilde,age 5 1 , m arrie d for 30 years and a dialysis patie ntfor 28 months, was emotional as she shared thefollowing:

Before dialysis, [my husband] and I would walk... som ething that I can't do now, at al l. . 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 An tonio . . . walk arou nd.N ow 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 m e,"I miss you I wish we

could do stuff together like we used to."

f d d l f h l l

In my [extended] family, I used to be the onein charge. . . . I used to be the one that goteverything toge ther but no w that I 'm in awheelchair, I depend on other people to carryme aroun d . . . that's the biggest c hange in my

life, that I have to dep end on oth er p eople. . . .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. Th i stheme is illustrated by the following statement byCar olina, 43 , a dialysis patie nt for six years and thedivorced mother of a 13-year old girl:

I can die a nytime. My little girl tells me .. ."C anwe go here, can we go there?" or "Wh at are wegonna do at Ch ristmas, Mo m ?" I say, "L, youdon't know I don't know if 1 might be hereon Ch ristmas " All of a sudden you can die, youknow.You got to take it day by day. I don't plananything ahead of time.

Similarly, R am on a, 4 5, a dialysis patie nt for 11

months, stated that

I'm always thinking what kind of life I'm gonnahave. Am I goin g 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 ofProblems duringTreatment. n add i -t ion to bein g constantly aware of the precariousnessof l ife for dialysis patients, ma ny w om en expressedworr ies about l i fe- threatening compl ica t ions 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 wh ether I 'm gonna

come out alive or dead. (Berta, age 45, dialysispatient for 18 months)


7/12

I think, am I gonna die there or what? (Laura,32, dialysis patient for 11 months)

Deaths oJ ellow 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 particulartreatment "shift" on certain days and times, theydevelop relationships with other patients who sharetheir treatm ent schedule. Treatmen t 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 thoug ht,"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 com ing.. . . He had died So I thought, Well if he died,I guess maybe I'm next "(Olga, age 5 1, dialysispatient for two years)

Near D eath Experiences. Women's perceptionsof their precarious hold on life were also derivedfrom their having experienced serious episodes ofillness. Eight women (31 percent) recounted timeswh en 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 awareness

of death in relation to uncertainty associated withbeing a dialysis patient, con cerns with the possibil-i f bl d i d b i

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

Problems in Family Functioning Although

specifically included in the in terview schedule,sues related to family emerged as a theme for maparticipants. Problems described included marconflict (rt = 3), conflict between participants aadult or mino r children n = 4), family membebeing involved in the criminal or juvenile justisystems (n = 4), participants being victims of veror em otional abuse by family mem bers ( = 3) , anfamily involvement with Child Protective Servi(tt = 2). Although the num bers were small, wom

describing such family problems were clearly dtressed by their particular circumstances, and thblamed the stress resulting from these situations their illness and the problems encountered in thtreatment experience.

Integ rated nalysis and Relationshipsbetween VariablesThe constructivist findings of this study, obtainthrough qualitative data collection and analymethods, are the study's primary focus. Howevfor purposes of exploring how those constructfindings relate to the variable of nonadherenfollowing the separate analyses of qualitative anquantitative data, participants were assigned to of two groupsadherent or nonadherent. Thgroup assignment was made on the basis of thPO ^ measure. W ith the standard PO ^ level of mg/dL as the cut point for adherence (Bame et 1993), 10 participants (38 percent) were classif

as adherent, and 16 (62 percent) were classifiednonadherent. As a group, wom en in the nonadhergroup had a mean PO^ level of 7.4 mg/dL (ran= 6.1 to 9.6 m g/dL) compared w ith a mean POlevel of 5.1 mg/dL (range = 3.7 to 5 .5 m g/dL) fwomen classified as adherent.

The constructivist approach of this study and ismall sample size {N = 26) did not meet certaconditions such as random selection and n ormdistribution of variables, so the results did n ot readi

lend themselves to the use of tests of significanDecisions regarding meaningful differences betw^h dh d dh d


8/12

ment, and language preference; they differed withrespect to poverty status, length of time on dialysis,family history of ESRD, and imm igrant 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 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 were

also 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).

amily 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 ESR D 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 than

nonimmigrant women but had been on dialysisabout equally as long as nonimmigrant women inthe adherent category (Ms = 24 months and 27months, respectively).

onstructimst 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 of

Similarly, participants in general expressed aheightened awareness of death through their ac-counts of the uncertainty of being a dialysis pa tient ,the possibility of something going wrong duringtreatment, and observing or learning of deaths of

fellow patients. Women wh o described their ownnear-death experiences, however, were more likelyto be nonadherent.

IS USSION

Mexican American women were selected as the fo -cus of this study because of their high risk of ESR Dand consequent dialysis treatment and because thisgroup has been relatively neglected in the researchliterature. Nevertheless, limiting the current study to

Mexican American w omen precluded the possibilityof attributing findings specifically to gender-specificor culturally specific patterns or factors. A secondlimitation o f 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 on

dialysis affects nonadherence. Because participants'perceptions were obtained at only one po int 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 uncovering

multiple realities (Kuzel, 1992).The low socioeconomic status of the sample is

i t t ith th i ifi tl l i


9/12

patients (Bame et al., 1993;Loghman-Adhani,2003).Poverty may afect 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 ES RD 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 Charm az (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-me nt. However, it is certainly possible that wom en'snear-death experiences were the result of theirnonadherence. Because this constructivist findingemerged from the in-dep th 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 is

totally different way of living; family life becomcentered on the patient's treatment schedule, anthe family is threatened by decreased financial stus, unem ployment, lifestyle changes, altered socand family roles, and decreased ability to fulfil

long-range life goals. Although psychosocial factstrongly influence how patients adjust to dialysisocial work interventions can affect patients' pschosocial situations and enhance patient outcom(Dobrof, Dolinko , Lichtiger, Ur ibar ri, Epste2001), supporting continuation of federal regultions mandating involvement of social workers indialysis treatment teams. Nevertheless, the literaturegarding family needs of dialysis patients and tinfluence of family dysfunction on treatment adh

ence is unclear.

IMPLICATIONS FOR SOCIAL WORK

The present study suggests that a social constructiviapproach is useful for social workers in understaning how Mexican American women make meaing of their realities as dialysis patients. Unlike tbiomdical approaches that have dominated theliterature on illness management, with their redutionistic and prac titioner-oriented perspectives, tsocial constructivist paradigm is highly compatibwith social work values and precepts. Th e conceof knowledge construction occurring within thesocial context is synonymous with the personin-environment (Germain Gitterman, 1987approach that is of paramount importance to thpractice of social work. This principle views peopas continually shaping, and being shaped by, thenvironments. Furthermore, with its aim of un destanding how people construct their own realiti

and meanings of what is important, the social costructivist perspective fosters the social work preceof starting where the client is (Goldstein, 1983). AsPerlman (1957) noted, a client's problem can onbe taken hold of from where he or she stands.Ththe social constructivist perspective presents a valuable framework for informing social work practiwith this special population of Mexican Am ericdialysis patients. The socially constructed realitthat women described in this study included po

erty, family dysfunction, loss of personal freedoidentity changes involving altered body image a

i l l d h i h d f d h


10/12

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 un ique 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 construc tion

of 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.

ON LUSION

ESRD and its treatment is a growing problem,disproportionately affecting peop le of color includ-ing Mexican American wom en, a population often

overlooked in the literature. A com mo n problemamong dialysis patients, treatment nonadherencehas been the subject of much past research, mostlyfrom a traditional, biomdical 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 is

needed, 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 by

the individuals themselves. HSU

R F R N S

Bame, S. I., Petersen, N. , Wray, N . P. (1993).Variationin hemodialysis patient compliance according todemo graphic characteristics. Social Science Medicine,31 , 1035-1043 .

Becker, M. H. (1990). Theoretical models o f adherence andstrategies for im proving adherence. In S.A. Shum aker,E. B. Schron, J. K. Oc ken e (Eds.), Tlxe handbook of

health behavior (pp. 544). Ne w York: Spring er.Blum, L. H. (1985). Beyond medicine: Healing power inthe doctorpatient relationship. Psychooiical Report51 , 399-427 .

Boyer, C. B., Friend, R., Chlouv erakis, G., & Kaloyanides,G. (1990). Social support and d emog raphic factorsinfluencing compliance of hemodialysis patients.

Journal ofApplied Social Psychology, 22, 1902-1918 .Burr,V. (1995). An introduction to social constructivism.

London: Rout ledge.Came ron, C. (1996). Patient compliance: Recognition of

factors involved and suggestions for promoting com-pliance with therapeutic regimens.Jtira/ ofAdvancedNursing 24 , 244-250 .

Charmaz, K. (1995).The body, identity and self:

Adaptingto impairment. Sociological Quarterly, 36, 657680.Cha rmaz, K. (1999). From the sick role to stories of self:

Understanding the self in illness. In R.J. Contrada(Vol. Ed.) & R . D. Ashm ore (Series Ed.), Self socialidentity an d physical healinq. Vol. 2: Self and social identi(pp. 20 9-2 39 ). New York: Oxford University Press.

Christense n,A.J. ,Ben otsch, E. G.,& Smith,T.W. (1997).Determinants of regimen adherence in renal dialysis.In D. S. Goc hm an (Ed.), Handbook of health behaviorresearch I: Provider determinants (pp. 231244). N ewYork: Plenum Press.

Christensen, A.J. , Sm ith,T,T urner, C.W., Holman,J. M .,Gregory, M. C , & R ich , M. A. (1992). Family su p-port, physical impairment, and adherence in hemo-dialysis: An inv estigation of pain an d 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 H ealthCounseling 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://ww w.cen sus.gov/prod/2003pubs/p60-221 .pdf

DiMatteo, M. R., & DiNicola, D. D. (1982). Achieving pa-tient compliance: riie psychology o f the medical practitioner srole. N ew York: Pergamon Press.

Do br ofJ ., Dolin ko, A., Lichtiger, E., Urib arri,J., &Epstein, I. (2001). Dialysis patient characteristics andoutcomes:The complexity of social work practicewith the end-stage renal disease population. SocialWork in Health Care, 33(3/4) , 105-128.

Ell, K. (1996). Social networks, social support and copingwith serious illness:The family connection. SocialScience and Medicine, 42, 173183.

Fishman, B. M., B obo, L., Kosub, K., Womeoda,J. (1993).Cultural issues in serving minority populations:Emphasis on Mexican-Americans and African-Americans. A merican Journal of the Medical Sciences,306, 160-166.

Gerber, K. (1986). Co mplian ce in the chronically ill: Anintroduction to the problem. In K. E. Gerbe r &A. M. Nehemkis (Eds.), Compliance:Tlie dilemma of thechronically ill (pp. 1223). New York: S pringer.


11/12

Goldstein, H. (1983). Starting wh ere the client is. SocialCasework, 64, 267-275 .

Hailey, B. J., & Moss, S. B. (2000). Compliance behaviourin patients undergoing haemodialysis:A review of theliterature. 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.H en er.T , Weisenberg, M., & Har-Even, D. (1996).

Supportive versus cognitive-behavioral interventionin achieving adjustment to home peritoneal kidneydialysis . JoMmfl/ of Counseling Clinical Psychology, 64,731-741 .

Kaplan, R. M., & Simon, H.J. (1990). Comp liance inmedical care: Reconsideration of self-predictions.Annals of Behavioral M edicine, 12, 6671.

Karoly, R (1993). Enlarg ing the scope of the co mpli-ance construct: Toward developm ental and motiva-tional relevance. In N . A. Krasnegor, L. Epstein, S. B .Johnson, & S.J.Yaffee (Eds.), Developmental aspects ofhealth 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 ). New bury Park, CA: SagePublications.

Lafayette, R.A. (1995). Preventing disease progression inchronic renal failure. American Family Physician, 52,1783-1791.

Leggat,J. E . J r , Orzol, S. M., Hulbert-Shearon,T. E.,Go lper,T .A.Jo nes, C A ., H eld, P.J., & Port, E K.(1998). Non comp liance in hemodialysis: Predictorsand survival analysis. American Journal of KidneyDiseases, 32, 139-145 .

Lo, R. (1999). Co rrelates of expected success at adherence

to health regimen of people with IDDM. Journal ofAdvanced Nursing, 30 , 418-424 .Loghm an-Adham, M . (2003). Medication noncompliance

in patients with chronic disease: Issues in dialysis andrenal transplantation. American Journal of Mana gedCare, 9, 155-171.

Miles, M. B., & H uberm an, A. M. (1994). Qualitative dataanalysis:An expanded somcehook 2nd ed.) .ThousandOaks, CA : Sage Pub lications.

Millen, N., Walker, C. (2001). Ov ercom ing the stigmaofc hr on ic illness: Strategies for normalization of a spoiled identity. Health Sociology Review, 10, 8997.

Nehemkis , A. E., & Gerber, K. E. (1986). Co mplianc ean d the quality of survival. In K . E . Gerber & A. M.

Nehemkis (Eds.), Compliance:Tlie dilemma of thechronically il l (pp. 7395). Ne w York: Sp ringer.Paes,A.H.P,Bakker,A.,& Soe-Agnie, C.J. (1997). Impact

of dosage frequency on patient compliance. DiabetesCare, 20, 1512-1517.

Perlman, H. H. (1957). Social casework:A problem solvingprocess. Chicago: University of Chicago Press.

Pugh ,J. A., Medina, R. A., C ornell , J . C , & B asu, S. (1995).N I D D M is the major cause of diabetic end-stagerenal disease: More evidence from a tr i-ethnic com-munity Diabetes, 44, 1375-1481 .

Schwab,T, M eyerJ . , & Merrel l, R. (1994). Measuring at-titudes and health beliefs amo ng M exican A mericanswith diabetes. Diabetes Educator, 20, 221-227 .

Sensky,T., Leger, C , & Gilmour, S. (1996). Psychosocialand cognitive factors associated with adherence todietary and fluid restriction regimens by people onchronic hemodialysis Psychotherapy and Psyclwsomatics

Tro stleJ. A. (1988). Medical compliance as an ideology.Social Science and M edicine, 21, 1299-1308.

U.S. Depar tment of Health and Hu ma n Services, (n.d.).Poverty guidelines, research, and measurement. RetrieApril 10,20 07, from http://aspe.h hs.gov /poverty /index.shtml

U.S. Renal Data System. (2005). USKDS 2005 Annual

Data Report. Bethesda, MD : National Institute ofDiabetes and Digestive and Kidney Diseases, NationInstitutes of Health, and U.S. Departmen t of Healthand Human Services.

Mary S.TiJerina PhD is associate professor. School of SWork, Texas State Uniuersity-San Marcos, 601 UniversitDrive, San Marcos,TX 78666;e-ma il: mary.tijerina@txstaedu.

Original ma nuscript received IVIay 3 2007Final revision received January 29 2009Accepted February 3 2009

er250tt0BS;

Instant Certificates , :


12/12

A Social Constructivist Perspective

Documents

Transcript of A Social Constructivist Perspective