Thematernalexperienceofhavingdiabetesinpregnancy
JillA.Nolan,MA1,SusanMcCrone,PhD,RN,PMHCNS-BC,2&IlanaR.AzulayChertok,PhD,RN,IBCLC2
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DepartmentofCommunityMedicine,PublicHealthSciences,WestVirginiaUniversity,Morgantown,WestVirginiaSchoolofNursing,DepartmentofHealthPromotion,WestVirginiaUniversity,Morgantown,WestVirginia
Keywords
Diabetes;diabetestype2;pregnancy;qualitative.
Correspondence
SusanMcCrone,PhD,RN,PMHCNS-BC,WestVirginiaUniversity,SchoolofNursing,HealthPromotion,P.O.Box9630,Morgantown,WV.
Tel:304-293-1400;Fax:304-293-2517;
E-mail:smccrone@hsc.wvu.eduReceived:December2009;accepted:July2010
doi:10.1111/j.1745-7599.2011.00646.x
Abstract
Purpose:Todescribethematernalexperienceofhavingtype2orgestationaldiabetesinpregnancyusingfocusgroupsandindividualtelephoneinterviews.Datasources:Eightwomenwhohadtype2orgestationaldiabetesinatleastonepregnancyandparticipatedinthequalitativestudyaddressingtheopen-endedguidingquestionsontheirexperience.
Conclusions:Thisphenomenologicalstudygavevoicetothewomen’sexpe-riencewithandconcernsabouthavingdiabetesinpregnancy.Threeprimarythemesemergedandwereidentified:(a)feelingconcernfortheinfantrelatedtodiabetes,(b)feelingconcernforselfrelatedtodiabetes,and(c)sensingalossofpersonalcontrolovertheirhealth.Subthemesforeachoftheprimarythemeswerealsoidentified.
Implicationsforpractice:Theexperiencessharedbythesewomenmayservetoinformthedevelopmentofinterventionsaimedatmeetingtheneedsofwomenwithdiabetesinpregnancy.Bylearningfromthethemesofthephenomenologicalstudy,advancepracticenursesmayanticipatetheneedsofthewomendiagnosedwithdiabetesinpregnancytoaugmenttheircare,edu-cation,andpromotionofdiabetesself-managementinpregnancy.
Diabetesisacommonpregnancycomplication,withanestimatedprevalencerateof3%–7%(Baptiste-Robertsetal.,2009;Ferrara,Hedderson,Quesenberry,&Selby,2002).Gestationaldiabetesvariesindirectproportiontotheprevalenceoftype2diabetesinagivenpopula-tion.Withtheprevalenceoftype2diabetesontherise,theprevalenceofgestationaldiabeteshasalsoincreaseddramaticallyintheUnitedStatesinthelast20years(Dabeleaetal.,2005;Getahun,Nath,Ananth,Chavez,&Smulian,2008;Hunt&Schuller,2007).Moreover,womeninWestVirginiahaveahigherprevalenceofpregestationaldiabeteswhencomparedtotherateintheUnitedStates(5.7%vs.1.8%,respectively;D’Angeloetal.,2004).
Poorlycontrolleddiabetesinpregnancyincreasestherisks,complications,andadverseoutcomesforwomenandtheirinfantsintheperinatalandneona-talperiods(Gainor,Fitch,&Pollard,2006;Galindo,Burguillo,Azriel,&Fuente,2006;HAPOStudyCo-operativeResearchGroup,2008;Nielson,Moller,&Sorensen,2006).Havingdiabetesinpregnancyin-creasestheriskthatawomanwilldeveloptype2di-abeteslaterinlife(Feig,Zinman,Wang,&Hux,2008;Retnakaranetal.,2008)andalsoincreasestheriskthatthechildrenofsuchpregnancieswilldeveloptype2diabetes(Clausenetal.,2008).Despitetheincreasingprevalencerateofgestationaldiabetesandthesignificantandsometimeslong-termimpactofthediseaseonbothwomenandtheirinfants,littleisknownaboutthema-ternalexperienceofhavinggestationaldiabetes.Becauseofthelimitedresearchontheexperienceofhavingtype2orgestationaldiabetesduringpregnancyandtheprevi-oussuccessoffocusgroupsinadvancinghealthresearchandeducation(Bender&Ewbank,1994),focusgroupswereusedtogainadeeperunderstandingofthismini-mallyexploredissue.
Althoughgestationaldiabetesinparticularhasnotbeenstudiedusingfocusgroups,focusgroupshavebeenusedinthepasttoexploreaspectsofdiabetes,includingdi-abetesmanagementamongthegeneralpopulationofadults(Lin,Anderson,Hagerty,&Lee,2008;Vincent,Clark,Zimmer,&Sanchez,2006).Astudyexploringcul-turalperceptionsofdiabeteswasconductedamong(non-pregnant)adultsinWestVirginia.Researchersfoundthat
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Diabetesinpregnancyqualitativestudyfocusgroupscanservetoinvolvecommunitiesinthedevelopmentofculturallyrelevantinterventions(Smith,Black,Olson,&Tessaro,2002).
Morerecently,therehavebeenaselectnumberofsmallerstudiesthathaveusedfocusgroupstoexploredi-abetesamongpregnantwomen;however,noneofthemhaveincludedwomenwithgestationaldiabetes.Aqual-itativestudyutilizingindividualface-to-faceandtele-phoneinterviewsofsevenpregnantwomenwithtype1diabetesidentifiedincreasedhealthchallengesexpe-riencedbywomenwithdiabeticpregnanciesandprob-lemsrelatedtolimitedaccesstoeducationandresourcesspecifictothewomen’sneeds(King&Wellard,2009).Anotherstudyusingfocusgroupsandindividualinter-viewsexaminedtheexperienceofwomeninEnglandwithpregestational,type1,andtype2diabetes.Thisstudyidentifiedthefollowingthemes:relinquishingper-sonalcontrol,pregnancyovershadowedbydiabetes,andhaphazardpreconceptioncare(Lavenderetal.,2009).Neitherofthesestudiesincludedwomenwithgesta-tionaldiabetes;hence,thisstudywasundertakentofillthisidentifiedgapintheliterature.Theobjectiveofthestudywastoexplorewomen’sexperienceofhavingdi-abetesduringpregnancywithasampleofwomeninWestVirginiawhohadpregestationaldiabetesorges-tationaldiabetesmellitus.Forthisstudy,weusedaqualitativeapproachwithcross-sectionaldatacollectiontoprovidearichunderstandingofawoman’sexperienceofhavingdiabetesduringherpregnancy.
Methods
Operationaldefinitions
Gestationaldiabetesmellitusisanoperationalclassi-ficationratherthanapathophysiologicconditioniden-tifyingwomenwhodevelopdiabetesmellitusduringgestation(NationalDiabetesDataGroup,1995).Womenwhodeveloptype1diabetesmellitusduringpregnancyandwomenwithundiagnosedasymptomatictype2dia-betesmellitusthatisdiscoveredduringpregnancyaredi-agnosedwithgestationaldiabetesmellitus.Womenwithdiabetesmellitusbeforepregnancyareconsideredtohave“pregestationaldiabetes”andarenotdiagnosedashavinggestationaldiabetes(Mayfield,1998).
Design
Inthisphenomenologicalstudy,weusedaqualitativedescriptivedesignusingcontentanalysistodescribethewoman’sexperienceofhavingdiabetesduringherpreg-nancy.Spiegelberg(1975)notedthat“descriptivephe-nomenologystimulatesourperceptionofthelivedex-periencewhileemphasizingtherichness,breadth,and
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depthofthoseexperiences”(p.57).Ourgoalwastode-scribethematernalexperienceofhavingpregestationalorgestationaldiabetesinthewomen’sownvoices.
Participants
Werecruitedaconveniencesampleofeightwomenbe-tweenNovember2008andMay2009usingflyersdis-tributedinhealthcareprovideroffices,acountyWomen,Infants,andChildren(WIC)Programoffice,andcom-munitydaycarecenters.Theparticipantinclusioncrite-riawerewomeninWestVirginiawhohadself-reportedeitherpregestationalorgestationaldiabetesinatleastonepregnancy(hereinreferredtoas“diabetesinpreg-nancy”),wereatleast18yearsofage,andwerefluentinEnglish.Toaccessamorediversesocioeconomicandgeographicpopulation,threerecruitmentsiteswereusedfordatacollection.Focusgroupswereconductedinauniversitymedicalcenter,aWICclinic,anddatawerealsocollectedthroughindividualtelephoneinterviews.Thetelephoneinterviewswereconductedwithwomenwhowereunabletoparticipateinpersonasaresultoflocationandtovalidatefindingsfromthefocusgroups.Thesamplewascomposedofeightwomen,sixwomeninoneoftwofocusgroupsessions,andtwowomenwhoparticipatedviatelephoneinterviews.Smallerparticipantnumbersarerecommendedinfocusgroupswhentheparticipantshaveahighlevelofinvolvementwiththetopic,thetopicisemotional,ortheparticipantsareex-pectedtogivepersonalaccounts(Morgan,1998).
Theaverageageofthewomenwas35.0±5.7.Theaveragelengthoftimeofthewomenwhohaddiabetesinpregnancyfromdeliverytoparticipationinthefocusgroupwas1.75years.Amongtheparticipants,twohadpregestationaldiabetesandsixhadgestationaldiabetesdiagnosedatanaverageof24.5±4.9weeksgestation.Theaverageweekofdeliverywas38.3±1.4weeksgesta-tion.Fiveofthewomenwereinduced,50%hadcesareandeliveries,and50%deliveredvaginallywithoneforceps-assistedvaginaldelivery.ThedemographicsofthesamplearepresentedinTable1.Halfofthewomen(n=4)hadboysandhalfofthewomen(n=4)hadgirls.Halfoftheinfants(50%,n=4)experiencedcomplicationsintheearlyneonatalperiod.Threeinfantsdevelopedjaundiceandoneinfantexperiencedseverehypoglycemiarequir-ingadmissiontoaneonatalintensivecareunit(NICU).Oneinfantwasconsideredlargeforgestationalageandonewassmallforgestationalage,whiletheotherswereaverageforgestationalage.
Procedures
ThestudywasdeemedexemptbytheInstitutionalRe-viewBoardatourinstitutionprecludingtheneedfor
J.A.Nolanetal.Diabetesinpregnancyqualitativestudy
Table1Demographiccharacteristicsofparticipantsinfocusgroups(n=8)CharacteristicType2diabetesGestationaldiabetesMarried
WestVirginianativeCompletedcollegePrimiparaMultipara
InduceddeliveryVaginaldeliveryCesareandelivery
%(n)25(2)75(6)100(8)62.5(5)75(6)75(6)25(2)62.5(5)50(4)50(4)
noteswereusedasachecktomakesurethatthediscus-sionontheaudiotapewasclearlyunderstandable.Partic-ipantsreceivedagiftcardforparticipatinginthestudy.
Dataanalysis
Thefocusgroupsessionswereaudiotapedandthentranscribedverbatimbyamemberoftheresearchteamwhowaspresentforallfocusgroupsandinterviews.Informalmemberchecksweremadeduringthefocusgroupsandinterviewsintheformofsummarizingandparaphrasingtoensureunderstandingofpersonalex-periences.Thetelephoneinterviewswerefoundtore-peatmanyoftheideasexpressedinthefocusgroups,therebyverifyingsaturation.Thesamplesizewasthendeterminedbytheconsistencyofresponsesfromthefo-cusgroupsandthetelephoneinterviews.AsidentifiedbyGiorgi(1985),thedescriptionoftheexperienceswasconsideredasawholefromtheaudio-tapedsessions.De-scriptionswererereadbyallthreeinvestigators.Clarifi-cationwassoughtbyrelatingthedescriptionstoeachotherandtothetotalityoftheexperience.Languagefromthewomenwasusedtoreflectthethemes.Thesethemeswerethenexaminedinthecontextofexistingevidenceonthetopic.Finally,theexperiencesweresynthesizedintothemeaningoftheexperience.
documentedinformedconsent.Writtenandverbalinfor-mationaboutparticipationwasprovidedtothewomen,andtheysignedareleaseformfortheaudiotapingofthefocusgroupsessions.Participantshadtheoptionofrequestingterminationoftherecordingatanytime.Noneoftheparticipantschosethisoption.Abriefstruc-turedquestionnairewasusedtocollectdemographicandhealthdata(withoutidentifyinginformation).Open-endedguidingquestionsabouthavingdiabetesinpreg-nancywereusedforfocusgroupsandindividualtele-phoneinterviewstoexplorethewomen’sperceptionsoftheirpregnancyexperience.Open-endedguidingques-tionssolicitedinformationaboutparticipants,experi-encesandfeelingsabouthavingbeendiagnosedwithdi-abetesinpregnancy,barrierstocare,diabetesmanage-ment,andconcernsaboutthefuture(seeTable2fortheinterviewguide).Thesamequestionswereusedinboththefocusgroupsandthetelephoneinterviews.Thetelephoneinterviewswereusedtoestablishcredibilityasparticipantswereabletoidentifyexperiencesastruetotheirexperiencesaswellastoincreaseinclusionofex-periencesofwomenfromotherregions.Thefocusgroupdiscussionswerefacilitatedbythesamemoderatorusingtheguidingquestions.Participantsweregivenacopyofthequestions,thesessionswereaudiotaped,andanaddi-tionalinvestigatorwaspresentwhotookfieldnotes.Field
Results
Phenomenologywasusedtoexploretheexperiencesofwomenwhohaddiabetesinpregnancy.Threeprimarythemeswereidentified:concernfortheinfantspecifictodiabetes,concernforselfspecifictoperinatalcompli-cationsandrelatedtodiabetesinthefuture,andsenseofcontrol.Therewerealsosubthemesforeachoftheprimarythemes.
Concernfortheinfantspecifictodiabetes
Participantsexpressedconcernonmultiplelevelsfortheinfantbothpre-andpostnatal.Thisanxietywas
Table2Diabetesinpregnancyfocusgroupquestions
1.Tellusaboutyourexperiencewithdiabetesduringyourpregnancy.2.Tellusaboutyourfeelingswhenyoufoundoutthatyouhaddiabetes.3.Howdidthediagnosisaffectyouremotionsduringpregnancy?
4.Whatchallengesdidyoufacetryingtomanageyourdiabetesduringpregnancy?
5.Whatwouldyouhavewantedtobedifferentwithyourhealthcareduringpregnancy?6.Whatrecommendationswereyougiventomanageyourdiabetesinpregnancy?7.Howdidyoumanageyourdiabetes?Whatworked?
8.Whatisyourunderstandingoftherelationshipbetweenhavingdiabetesduringpregnancyandanyfutureriskofdevelopingdiabetes?
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Diabetesinpregnancyqualitativestudyexacerbatedbytheirperceivedinabilitytoaccessaccu-rateandrelevantinformationthatdidnotincludescaretacticsandcondescension.Thethreesubthemesidenti-fiedforthissectionareprenatalconcernfortheinfant,postpartumconcernfortheinfant,anddesireforaccurateinformation.
Prenatalconcernfortheinfant.Thewomendis-cussedtheirfeelingsofconcernabouttheirinfants’healthandwell-beingthroughoutthepregnancy.Whendiag-nosedwithgestationaldiabetes,amotherwondered,“Whatwillbethebadeffectonmybaby?”expressingconcernthatherinfantmightbeatrisk.Participantsexperiencedincreasedmedicalmonitoringandsixwomendeliveredwithmedicalintervention(induction,forceps,and/orcesareandelivery),therebyincreasingtheiranxietyabouttheirinfants’health.
Postpartumconcernforinfant.Therewasacom-monlysharedexpressionoffearthatprenataldiabetesmaynegativelyimpactinfants’postnatalandlong-termhealth.Onemotherhadvaguefearsregardingherchild’shealth,despiteherhealthcareprovider’sreassurance,“...thedoctorsayshe’shealthy,butIstillhavesomecon-cerns,”evenwithmedicalconfirmationthathersonwashealthy,shehadlingeringanxietyforhishealth.Manyofthewomenexpressedfeelingguilty,especiallywhentheirinfantshadtoundergoadditionalmonitoringandtestingfollowingdelivery.Oneparticipantreportedthatinfanttesting“...causedalotofguilttoo,whenyouseewhattheydotothebaby.”Onewoman,whoseinfantexperiencedcomplicationsassociatedwithseverehypo-glycemiashared,“itallhappenedsofastandtheytookhertotheNICU...ShewasincriticalconditionandIfeltliketherewasnothingIcoulddoforher.”Partici-pantswerealsoconcernedabouttheirinfants’futureriskofdevelopingtype2diabetes.
Desireforaccurateinformation.Manyofthewomenattributedtheirfearstoinformationtheyreceivedfromtheirproviders,readintheliterature,retrievedfromonlinesources,andheardfromotherpeople.Thewomenfeltthatthehealthcareprovidersusedscaretacticssuchastellingthemaboutpotentialinfantproblemstoinducecompliancewithrecommendations,“Well,theyscaredthecrapoutofme...50%mortalityrateforthefetus...”Thestoriesheardfromotherssuchasfriendsandfamilyalsoincreasedfear,“Idon’twanttohearaboutsomeoneelse’sbabythathadalltheseproblemsbecauseof[dia-betes],becausethat’sgoingtoputmorefearinme.Andthat’sallyouhearalotofthetime.”Ontheotherhand,thewomanwhoseinfantwasadmittedtotheNICUfeltthatshehadbeeninsufficientlyeducatedregardingpo-tentialcomplicationscontributingtoherincreasedfear,“Ifeellikenoonereallypreparedmeforwhatcouldhappentothebaby.OnlyafterithappenedandIlearnedmore
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aboutitdidIunderstandwhatwasgoingon.Itwasreallyscary.Ididnotknowabouthypoglycemiaandhowseri-ousitcouldbe.Iwouldhavewantedmoreinformationaboutit.”
Concernforselfspecifictoperinatalcomplicationsandriskofdevelopingdiabetesinthefuture
Manyparticipantsexpressedconcernforthemselvesphysicallyandemotionallybothduringthepregnancyandinthefuture.Subthemesidentifiedwereemotionalresponse,concernfordiabetesself-management,andconcernabouttheriskofdevelopingdiabetesinthefu-ture.
Emotionalresponse.Uponlearningthattheywerediagnosedwithgestationaldiabetesinpregnancy,threeofthewomensaidthattheyoriginallyfeltshockandde-nial,“Itquitesurprisedme...Ididn’twanttobelieveitwastrue...Ikindofconsidermyselfontopofthehealthydeal...IthinkIhadalotofdenial...Isaidstraightout[totheprovider]Idon’tbelieveit.Howcouldthatbe?”An-otherwoman,whodescribedherselfaspetiteandhealthconscious,hadsimilarfeelings,“Iwasalsoindenial.I’mreallysmallandIjustthoughtthatitwasn’tgoingtohap-pentomeandIflunkedthefirstone[glucosetolerancetest],Iwasshocked,andwhenIflunkedthe3hourIwasshockedbecauseIfeltfine.”
Onewomanwhohadfrequentlyexperienceddiscom-fortfollowingeatingandhadapositivefamilyhistoryofdiabeteswasnotsurprisedbyherdiagnosis,althoughshestilldidnotwanttoaccepthercondition:
IknewIhadit.Mydadhadjustbeendiagnosedwithdia-betesandmygrandmaandallmyauntsanduncles...everytimeIatecertainthings,IwassosickIcouldn’tgetoffthecouchandIknew,IknewwhatitwasandIknewwhatwascausingit.CourseI’mstubbornanddidn’twanttofaceit...Iendedupreallysickandtheycalledthenursesover...Iwasn’tshocked.
Concernfordiabetesself-management.The
womenwerealsoconcernedabouttheirdiabetesmanagementinpregnancy,especiallymedicationadmin-istration,“Ifearedhavingtogooninsulinoranykindofpilloranything,ratherthandoingitbydietorexercise,”and“AtfirstIwasalittlescaredbecauseusuallywithdiabetesyouhavetodoshotsandkeepaneyeonwhatyoueatandtestyourblood...needlesallthetime.”Someofthewomenfeltreluctanceabouttherecommendedlifestylechanges,“Idreadhavingtochangeeverythingandit’shardtochange,it’snotsomethingthatyoucandoovernight.”Anothersaid,“Ilikesomeofmyjunkfood,”anditwas“...hardformetochangemydiet...actuallybeingabletodothat,isjustachallenge.”
J.A.Nolanetal.Thewomenwerealsoconcernedaboutobstetriccom-plications.Onewomanstated,“IwasconcernedthatIwouldhavetobeinducedandIdidn’twantthatwholespiralthateveryonetalksaboutthatendsupinaC-sectionandallofthat.”Anotherwomantriedpreventingcomplicationsbyrequestingtobeinduced,“Ikeptsaying,shouldn’twebedoingsomethingyouknow,I’veheardallthesehorrorstoriesabouthavingdiabetesandhavingbigbabiesandhavingsomuchtrouble,andIdidenduphavingaC-section.”
Concernabouttheriskofdevelopingdiabetesinthefuture.Thewomenwhodidnothavediabetes
priortopregnancysharedtheconcernofdevelopingdia-beteslaterinlife:
Ohyeah,itconcernsmealright.Andthedoctortoldmeintheendyouhavea75%chance...fromwhatI’vereaditwaslike50ormaybeeven60%greaterchancethatyouwilldevelopdiabetesafteryouhaveyourbaby.Sothatit’s,it’sanindicator,it’saredflag,it’ssomethingthattellsyouthiscouldbeahealthconcernforyoulateron...itwasscarybecauseIdidn’tthinkthatitbodedwellformyfuture.
Womenwhohadafamilyhistoryofdiabeteswereespeciallyconcerned,“Mymomandmygrandmother[havediabetes]...we’regoingtohavetowatchandjustkeepaneyeonmeasIgetolder.”Likewise,onewomanhadgestationaldiabeteswithpreviouspregnanciesandhad“...beentoldallmylife,wellsinceIgotitwiththefirstone,everybody’slikeyouknowbeforeyouturn40you’regoingtohavefullfledgeddiabetes.”Eventhewomanwithpregestationaldiabetesexpressedconcernaboutherfuture,“...ifIlivetobe100,that’s75yearsofdealingwithdiabetes.”
Sensingalossofcontrol
Athemeexpressedbymanyparticipantswasalossofcontrol.Thisincludedinternalcontroloftheirbloodsugarandexternalcontroloftheirmedicalmanagement.Thisfeelingwasexacerbatedbythefactthattheyfeltasthoughtheywerenotgivenindividualizedcareandhadlittlecontrolintheirinteractionswithpractitioners.Sub-themesidentifiedwereusurpingofcontrolbyhealthcareprovider,inabilitytocontrolbloodsugar,andlackoftai-loredcare.
Usurpingofcontrolbyhealthcareprovider.Thewomendiscussedtheirsenseofcontrolovertheirhealthandtheirdiabetesmanagement.Somewomenwerefrus-tratedbytheperceivedusurpingofcontrolbyhealth-careprovidersandthesenseofstruggleoverself-controlandself-determination,“Iwasconstantlyfightingto-wardstheend...Ihadallthisanxietyaboutbeingin-duced,whichwassomethingIdidn’twant...Ireallyfelt
Diabetesinpregnancyqualitativestudy
liketheyweretakingallthiscontrolawayfromme.”Participantsfeltalossofcontroltowardtheendofthepregnancy,“...thisisstillmydecision...andthenallofasudden,attheend,it’slikeyoucan’tmakeyourowndecisions,youcan’tdecidewhattodo,andtheyknowbest.”Thewomenperseveredtomaintaininter-nalcontrolovertheirbodiesduringtheirpregnancywithdiabetesinadditiontosensingastruggleforexternalcontrol,“Youneedtohavemorecontroloverwhat’sgo-ingonbecauseyoufeellikeyoudon’thavecontrol.”Par-ticipantswerealsofrustratedwiththeirproviders,“It’sliketheyknowyou,theyknowyourbody,eventhoughit’syourbodyandyouliveinit.”Someofthewomenper-ceivedthattheirhealthcareproviderslackedconfidenceinorrespectoftheirself-managementandweretold,“Youhavenocluewhatyou’redoing,Iknowbest,here’swhatwe’regoingtodo.”Othersfeltbelittledbytheirhealthcareproviders,“Weweretalkeddowntothewholetime...theydidn’ttrustme...theydidn’tbelieveyou.”Anotherparticipantalsofeltthatherprovider’sman-nerwasdisrespectful,“Ithoughttheywerepreachy...Igotpreachedatalot.”Muchofthefeedbackwasperceivedasnegative,“[They]tellyou...whatyoudidwrong.”Theyfeltthatthehealthcareproviders’attitudewas“don’tyoucareaboutthisbaby?”andthattheirproviders“hintthatmaybeyoujustdidn’tcareenoughaboutwhathappens.”Oneofthewomenwhoexperi-encedcomplicationsfeltthatherearlierrequestsforin-ductionwereignoredandthatheremergencycesareandeliverymayhavebeenavoided,“IwasprettyfrustratedbecauseIhadbeeninthehospitalacoupleofdaysbe-fore,readytohavethebabyandtheywouldn’tdeliver[me].”
Inabilitytocontrolbloodsugar.Somewomenfeltalackofcontrolandwerefrustratedbyglycemicinsta-bility,despitetheirdiabetesmanagementcompliance,“Iwouldgotothedoctorandshe’dbelike‘you’relosingtoomuchweight’...andthen...‘yourbloodsugaristoohigh’...Ifeltkindoftrappedinthere,eitherway”and“Ihadalotoffeelingsoffrustration,andI’mthekindofpersonwhotriedtobeverymethodicalaboutthiskindofstuffandIfeltreallyoutofcontrol.”Severalparticipantsfeltminimalsuccesswiththeirself-management,“It’saCatch22.You’renotdoingwhatyoushouldtokeepyourweightwhereitshouldbe,butyetyou’renotdoingwhatyoushouldtokeepyourbloodsugardown.”Onewomanhadafatalisticapproachtoheragenerallackofcontrol,“it’snotlikeyouhaveanycontrol,andwhateverisgoingtohappenisgoingtohappen.”Onapositivenote,ex-periencingdiabetesinpregnancyhaditsadvantagesforsomeofthewomenastheyfeltthattheylearnedtobettercontroltheirdiet,“Itdoeskindofmakeyoumoreac-countable”and“Itkeptmeeatinghealthier.”
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DiabetesinpregnancyqualitativestudyLackoftailoredcare.Thewomenalsoexpresseddis-appointmentinthelackoftailoreddiabetescare;beingtoldinformationtheyalreadyknewandnotbeingin-formedofdesiredinformation,“Ihadtomeetwiththeeducator,whospent45minutestellingmestuffIal-readyknewandthengoingoverstuffthatIfeltwasreallyimportant...Canyounottellmenowhowtoap-plyit?”Onewomandescribedremindingherselfthatherproviderwasnottalkingspecificallytoher,butwas“speakingtothemasses.”Someofthewomenfoundtheyhadtoberesourcefultogaininformation,“Ifyouwanttoknow,youhavetoaskalotofquestions...thereissomuchyouneedtoknow.”Oneparticipantfeltthein-formationprovidedtoherwassimplistic,“TheygavemealistofwhatfoodsgoinwhichgroupsandI...learnedthatinelementaryschool...itwasalmostoffensive.”An-otherparticipantfeltuninformedthroughoutthepreg-nancyandunpreparedforupcomingexaminations,“Itwouldbenicetoknow...testsyou’regoingtoneedandallthesethingsandwhattheymeanandwhattheycheckfor,and,justtoknowkindofwhatyou’regettingintoandwhattoexpect.”Ingeneral,manyofthewomenpre-ferredtobeinformedinadvanceregardingtestswithoutcoercionandwithtimetoconsideroptions,ratherthanfeel“pressuredthentohavetests...iftherewassome-thingwrong,theyweregoingtopressureyouintohav-inganabortion...wehadtoliterallyfightthedoctorsandsay...we’renotgoingtohaveanabortion...wehadtofightthemoveritandthatwashard.”Anotherpartic-ipantagreed,“Iwanttogohomeandthinkaboutthetest...talktomyhusbandaboutit.”Theyalsosuggestedmethodsofinformationdeliveryincludingonlinemeans,chatrooms,messageboards,networking,“somethingvir-tual,ormaybeevenaphonenumberofsomeoneyoucouldcallifyouhadaquestion.”
Discussion
EmdenandSandelowski(1999)identifyanimportantcriterionforaddressingrigorinaqualitativestudyas“thecriterionofuncertainty”(p.6).Theyidentifythatre-searchoutcomesare“atbesttentativeandthattheremayindeedbenowayofshowingotherwise”(p.5).Thishav-ingbeensaid,wetriedtoaddresstherigorofthestudyinseveralways.Credibilitywasdemonstratedthroughthetelephoneinterviewsand“memberchecks”byhav-ingsomeofthewomenvalidatethatthereportedfind-ingsrepresentedtheirlivedexperiences(Lincoln&Guba,1985).Inregardstoconfirmability,Sandelowski(1986)arguesthatonlyresearcherswhohavecollectedthedataandareimmersedinitcanconfirmthefindings.Othercriteriausedtojudgetherigorofqualitativeresearchistransferability;thisidentifieswhetherthestudyfindings
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havemeaninginothersimilarsituations.Asseveralau-thorsnote(Greene,1990;Lincoln&Guba,1985;Sande-lowski,1986),fitortransferabilityrestswithpotentialusersoftheresults,notwiththeresearchers.
Thewomensharedtheirperceptionsandfeelingsabouthavingpregestationaltype2orgestationaldiabetesinpregnancyinthefocusgroupsandtelephoneinterviews.Itisimportantforfutureresearcherstofocusonthisspecificdiabeticpopulationastheirmedicationrequire-mentsandself-managementneedsdifferfromthosewithinsulin-dependenttype1diabetes.Twoofthethreethemesthatwereidentified,feelingconcernforinfantandfeelingconcernforself,reflectknowledgeandworryonthepartofthewomeninthesampleaboutthema-ternalandinfantrisksofdiabetesinpregnancy.Inoursample,therewasahighrateofobstetricinterventionsandhalfoftheinfantsexperiencedearlyneonatalcom-plications.Theconcernsexpressedbythewomenalsoincludedlong-termissuessuchaslaterdevelopmentofdiabetesforbothparticipantsandtheirchildren.Thisisincontrasttoasurveythatfoundthatamajorityofthewomenwhohadbeendiagnosedwithgestationaldia-betesdidnotperceivethemselvestohaveanincreasedriskofdevelopingdiabetes(Kimetal.,2007).
Thewomeninthecurrentstudywantedinformationregardingpreventionofthesepossiblelong-termhealthconsequences.Likewise,thewomenexpressedaninter-estinamorepersonalizedandtailoredapproachtotheirhealthcare.Similartoapreviousstudy(Lavenderetal.,2009),thewomeninoursamplediscussedtheissueofpersonalcontrol.Someofthewomenperceivedthem-selvesasnotbeingconsideredpartnersintheirowncarebutratherobjectsofpreachingandbeingaccusedof“notcaringforthebaby.”Theydescribedthattheyreceivedlittlesupportbutrathercriticism.Thewomenwantedtobeinformedaheadoftime,givenoptionsaboutun-dergoingtests,ratherthanbeingpressuredtocompletethetests,andofferedtailoreddiabetescarewithappro-priatedlifestylechangerecommendations.Thewomanwhoremindedherselfthatherproviderwasnotspecif-icallyspeakingtoher,butwas“speakingtothemasses,”highlightstheoverallbeliefexpressedbytheparticipants,thattheywerenottreatedasindividuals.Thefindingsarealsosimilartothoseofaqualitativestudyexaminingperceptionsofwomenwithpregestationallydiagnosedchronicillnesses,includingdiabetes,regardingwomen’sdesiretolearnstrategiestomanagetheirillnessandpre-ventcomplications(Corbin,1987).Thewomeninourstudynotedthattheyhadreceivedtheirinformationfromprovidersandothers,readliterature,andretrievedinformationfromonlinesources.Despitetheiraccesstomultiplesourcesofinformation,therewasaperceptionofmanipulationandcontrolbytheirprovidersthrough
J.A.Nolanetal.theuseof“scaretactics”tourgecompliancewithrec-ommendations.ThewomanwhoseinfantwasadmittedtotheNICUfeltthatshehadnotbeenpreparedenoughforthepossiblecomplicationscausingalackofknowl-edgeandresultantfear.Thisraisesthequestionofhowtobesteducatewomenaboutthepossibleconsequencesofdiabetesinpregnancythroughasensitive,tailored,col-laborativeapproachwhileminimizingfear,concerns,andcoercion.
Thesupportandpromotionofdiabetesself-managementduringpregnancyiscrucialindecreasingthematernal–infantrisksassociatedwithdiabetes.Interventionsaimedatpromotingself-managementinpregnantwomenhavemetvaryingdegreesofsuccessinalteringlifestylebehaviorsandinreducingnegativepregnancyoutcomes(Artal,Catanzaro,Gavard,Mostello,&Friganza,2007;Kimetal.,2007).Inaddition,inter-ventionstoaddressthehealthissuesofpregnantwomenshouldbeaimedatmeetingtheperceivedneedsandconcernsofthesewomen.
Limitations
Itshouldbenotedthatthefocusgroupparticipantsinthisstudyhadahigheducationallevelunreflectiveofthestateasawholethatmayhavealsoinfluencedtheirac-cesstoinformation.ThefocusgroupswereconductedinamajorcityinWestVirginiawheretheprimarycampusofthestate’suniversityislocated,potentiallycreatingabiasintheconveniencesample.Evidenceofthediffer-encesbetweenthepopulationinthecitywherethestudywasconductedandthegeneralstatepopulationisthattherateofcollege-educatedadultsinthecityis47.8%,fargreaterthanthestate’srateof14.8%,andtheover-allU.S.rateof24.4%(U.S.CensusBureau,2009).InanefforttohaveamorerepresentativesampleofwomeninWestVirginia,oneofthefocusgroupswasconductedinaWICclinic,asapproximatelyhalfofpregnantwomeninthestatereceiveassistancefromMedicaid(O’Conner,2005).AswomeninWestVirginiawerespecificallytar-geted,theresultsmaynotbegeneralizabletootherpop-ulations.Furtherinvestigationintothespecificinfluenceofthehealthdisparitiesandhealthdeliveryinrurallo-cationsshouldbeexplored;priorresearch(Liu,2007)hasdocumentedlimitedaccesstocarenegativelyimpact-inghealthcareandoutcomes.Challengestorecruitmenthavebeennotedinruralpopulations(Smithetal.,2002)andwereexperiencedinthisproject,resultinginasmallsamplesize.Ontheotherhand,thesamplesizemayhavepositivelycontributedtoenablingallofthewomentosharetheiropinionsoneachissue,whichisnotalwayspossibleinlargerfocusgroupsettings.Furthermore,thefindingsarecompellingandhelptoilluminatethecom-
Diabetesinpregnancyqualitativestudy
plexitiesofemotionandexperiencethataccompanydi-abetesduringpregnancy.Listeningtotheexperiencesofwomencanhelpguidethedevelopmentofeffectivecareforwomenwithdiabetesinpregnancy.
Implicationsforpractice
Withtheincreasingratesofpregestationalandges-tationaldiabetes,theneedtoaddressthisissueinanappropriatemanneriscrucialinhelpingtopreventorreducefurthercomplicationsandtominimizedelete-riouseffectsofdiabetes.Thisphenomenologicalstudygivesvoicetowomenwhohavehadthisexperienceandinformsthedevelopmentoftailoredinterventionpro-gramsforwomenwithdiabetesinpregnancy.Interven-tionsshouldincludeimprovedaccesstoappropriateandeffectiveeducationaswellasdeliveryofcareusingaparticipatorymodel.Womeninthecurrentstudysug-gestedtheuseofonlinechatrooms,messageboards,andtelephonenumberstocallforquestions.Theseav-enuesshouldbeexploredanddevelopedtoaugmentstandardcare.Uponidentifyingdiabetesinpregnancy,nursesshouldassesseachwoman’sdiabetesknowledgeandsensitivelyaddressthewoman’sconcernsandques-tionswhileallowinghertimetoacceptthediagnosis.Pro-vidingeducationalmaterialsspecifictopatientneedsandrelayinginformationonavailableresourceswillencour-agebetterinformedparticipationandfacilitatecoopera-tion.Discussionaimedatidentifyingfearsandprovidingtailoredsupportandeducationcouldminimizefearsandencouragepositivelifestylechanges.Furthermore,demonstratingrespectofthewomaninherdiabetesself-managementwillpromoteimproveddiabetescarepartnership.
Acknowledgements
Theauthorsthanktheparticipantsforsharingtheirexperiences.ThestudywassupportedbyagrantfromtheDean’sFundatWestVirginiaUniversity,SchoolofNursing.
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