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Assessing quality of maternity care in Hungary: expert validation and testing of the mother-centered… Rubashkin, Nicholas; Szebik, Imre; Baji, Petra; Szántó, Zsuzsa; Susánszky, Éva; Vedam, Saraswathi 2017-11-16

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RESEARCH Open AccessAssessing quality of maternity care inHungary: expert validation and testing ofthe mother-centered prenatal care (MCPC)survey instrumentNicholas Rubashkin1* , Imre Szebik2, Petra Baji3, Zsuzsa Szántó2, Éva Susánszky2 and Saraswathi Vedam4,5AbstractBackground: Instruments to assess quality of maternity care in Central and Eastern European (CEE) region are scarce,despite reports of poor doctor-patient communication, non-evidence-based care, and informal cash payments. Wevalidated and tested an online questionnaire to study maternity care experiences among Hungarian women.Methods: Following literature review, we collated validated items and scales from two previous English-language surveysand adapted them to the Hungarian context. An expert panel assessed items for clarity and relevance on a4-point ordinal scale. We calculated item-level Content Validation Index (CVI) scores. We designed 9 new items concerninginformal cash payments, as well as 7 new “model of care” categories based on mode of payment. The final questionnaire(N= 111 items) was tested in two samples of Hungarian women, representative (N= 600) and convenience (N = 657). Weconducted bivariate analysis and thematic analysis of open-ended responses.Results: Experts rated pre-existing English-language items as clear and relevant to Hungarian women’s maternity careexperiences with an average CVI for included questions of 0.97. Significant differences emerged across the model ofcare categories in terms of informal payments, informed consent practices, and women’s perceptions of autonomy.Thematic analysis (N = 1015) of women’s responses identified 13 priority areas of the maternity care experience, 9 ofwhich were addressed by the questionnaire.Conclusions: We developed and validated a comprehensive questionnaire that can be used to evaluate respectfulmaternity care, evidence-based practice, and informal cash payments in CEE region and beyond.Keywords: Questionnaire, Validation, Respectful maternity care, Informal payments, HungaryPlain English summaryWomen in Hungary and in the CEE region report negativeexperiences with pregnancy care. It is unknown how com-mon these experiences are. High numbers of women paytheir obstetricians with informal cash payments, some-times called “tips”, in order to obtain higher quality care.We don’t know if, when women pay informally, they actu-ally get higher quality care.In order to quantitatively explore the experience ofquality maternity care in Hungary, we assembled a multi-disciplinary expert panel to adapt English-language mater-nity care surveys to the Hungarian context. We instructedthe experts to think broadly about all aspects of care thatmay be important to women.Generally, the experts found that English-language sur-veys could be easily adapted, and they helped us narrowthe number of survey questions from 155 to 117. Becausethe informal payment, or “tip” system, is specific toHungary, the experts developed new questions using Hun-garian words to represent this practice. We then tested allquestions on two groups of post-partum Hungarianwomen who use the internet: a random, representative* Correspondence: nicholas.rubashkin@ucsf.edu1Departments of Global Health Sciences and Obstetrics, Gynecology, andReproductive Sciences, University of California at San Francisco, Mission Hall,Box 1224, 550 16th Street, Third Floor, San Francisco, California 94158, USAFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Rubashkin et al. Reproductive Health  (2017) 14:152 DOI 10.1186/s12978-017-0413-3sample and another group recruited from online mater-nity care forums.We found that the new questions about informal cashpayments made sense to women and that women re-ported more positive experiences with care when theypaid informally. Women’s responses to an open-endedquestion revealed that we addressed the majority of caredimensions that mattered to them.In conclusion, we developed a survey to comprehen-sively explore the maternity care experience in Hungary.Our survey process and questions may be useful toexplore the maternity systems of surrounding countries.Article summaryStrengthsWe used a rigorous process to develop and validate a pa-tient survey instrument that can evaluate women’s expe-riences in the Hungarian maternity care system.No other survey has explored the connection betweeninformal cash payments and quality of maternity care inthe CEE region.LimitationsSurvey development could have employed more activeusers of the maternity system. Some care dimensionsimportant to women were not addressed by the survey.BackgroundPerson-centered care has been associated with engender-ing the most optimal relationship between patient andprovider in all medical specialties [1]. Balanced sharing ofinformation, individualized care plans, and continuousemotional support are elements that have been shown toimprove birth care outcomes and increase satisfactionwith the birth experience [2, 3]. The World Health Orga-nization’s (WHO) vision for quality of care for pregnantwomen and newborns mandates both the provision ofevidence-based medical services and curation of the ma-ternal experience [4, 5]. However, in a systematic reviewof 65 studies across 34 countries Bohren and colleaguesconfirmed that few tools exist to measure the experienceof respect or mistreatment in maternity care [6].While the CEE region demonstrates generally favor-able maternal health indicators [7], Miteniece et al.’s sys-tematic review of 20 investigations into the region’squality of maternity care confirmed the need to also as-sess the professional, technical, and informational as-pects of maternity care [8]. Birth care providers areoften trained with outdated curricula [9], resulting inoverapplication of non-evidence-based techniques.Doctor-patient communication is often poor, with pro-viders lacking the skills to interpret what mothers needduring pregnancy care [10, 11]. Women themselves playan important role in the doctor-patient interactionduring pregnancy, including uptake of information, opti-mizing health behaviors, and adherence to care. How-ever, there is scarce information about whether womenin the CEE region have autonomy over their childbear-ing experiences. Mitenice et al. conclude that the evi-dence on these and other aspects of quality maternitycare in the CEE region are derived in large part fromqualitative designs, and few studies provide nationallyrepresentative data [8].To date, there have been conflicting quantitative inves-tigations of the quality of maternity care in Hungary. Ina 1998 survey of academic obstetric departments,Hagymasy found high levels of “family-centered obstet-rics”, defined as involvement of fathers, an upright birth-ing position, and skin-to-skin to contact [12]. Incontrast, a 2004 “birth guide”, compiled by surveying aconvenience sample of women and hospital staff, re-vealed significant variations in the quality of informationprovided to pregnant women and in respectful treatmentfrom staff [13].Neither of these previous surveys explored the effectsof informal cash payments, even though in Hungarymore than 60% of pregnant women pay informally forbirth care [14]. Informal and formal cash payments mayaffect quality of maternity care in terms of affordabilityand accessibility of services. As with fee-for-service offi-cial payment schemes, informal payments may generateunnecessary use of services with “doctors recommendingprocedures in order to increase their income rather thanfor therapeutic benefit [15, 16].” Even though quantita-tive data is lacking, qualitative studies from Serbia andthe Ukraine found that women pay informally to have a“chosen” obstetrician attend their births, and that theyperceive many benefits to this continuity relationship—-mainly, receiving more respectful care [10, 17]. However,given the lack of representative data to measure andmonitor the quality of maternity care, the extent towhich women actually benefit from these payments isunknown.Investigators in the United States and in Canada haveused cross-sectional surveys to assess women’s experi-ences of quality maternity care, addressing issues ofevidence-based care, doctor-patient communication, andthe process of decision-making in birth. The Americansurvey Listening to Mothers 3 (LTM3) has been adminis-tered three times to a representative cohort of U.S.women [18]. Changing Childbirth in British Columbia(CCinBC) incorporated items from LTM3 but also usedcommunity-based participatory research methods to de-velop new items pertaining to women’s maternity carepreferences, their decision-making, and perceptions ofautonomy and respect [19, 20]. Given the existence ofhigh-quality, English-language survey items, we decidedto adapt and content validate these items for use in theRubashkin et al. Reproductive Health  (2017) 14:152 Page 2 of 10Hungarian context with the primary aim of creating acomprehensive questionnaire to explore quality mater-nity care. Specifically, we examined quality care accord-ing to the rates of obstetric procedures, several measuresof the experience of care, as well as the prevalence of in-formal cash payments.MethodsSurvey constructionTo create the first version of the questionnaire, we com-bined the LTM3 and the CCinBC surveys. Duplicateitems and those specific to foreign systems (e.g., Ameri-can health insurance) were excluded. We added a vali-dated scale to measure women’s role and ability toparticipate in decision-making, the Mothers Autonomyin Decision Making scale (MADM) developed by Vedamand colleagues [19]. We adapted informal payment ques-tions from a cross-country survey on general inpatients[21].The Hungarian maternity care system has similaritiesto Canada and the United States. A national health in-surance scheme covers Hungarian maternity services (asin Canada), and a Hungarian woman has her choice ofprivate or public prenatal providers (as in Canada andthe U.S.). Like North America, providers are not re-quired to be present for the births of their prenatal pa-tients, in which case the “on-call” provider attends thebirth. Unlike North America, in Hungary a pregnantwoman who desires to have her “chosen” prenatal pro-vider present at her birth will informally “contract” withher physician for the “extra” service of attending thebirth [22].Informal cash payments pose several challenges toquantitative exploration. First, informal cash paymentsare usually unregistered, and no government data sourceexists [23]. Second, Stepurko et al. found that respon-dents frequently refuse to answer questions about infor-mal payments [24]. Finally, a woman typically pays afterher delivery, making it challenging to explore associa-tions with prenatal and birth outcomes that necessarilyhappen prior to the payment [17]. Thus, we needed todevelop survey items that would be both culturally ac-ceptable and—at least in concept—precede in time theoutcomes of interest.Content validationWhen designing instruments it is common to undertakea validation process to provide evidence that the instru-ment is relevant to the regional context. One approachis to have experts judge the relationship between thesurvey items and the theory on which the instrument isbased [25, 26]. We invited 31 lay and professional mater-nity care content experts—including active users of thesystem—to validate the comprehensiveness and regionalspecificity of our questionnaire [27]. Experts were identi-fied through purposive sampling of research, profes-sional, and birth-advocacy networks to maximizenon-overlapping expertise [28]. Those experts who ac-cepted our invitation were instructed on how to reviewthe survey items in light of the concept of “women-cen-tered care”, focusing on issues of continuity of care,doctor-patient communication, care preferences, and theuse of evidence-based techniques [3, 29]. We requiredall experts to be bilingual in English and Hungarian.The final survey instrument, “The Mother-CenteredPregnancy Care Survey”, consisted of 111 items: 5screening, 16 prenatal care, 35 birth care, 12 postpartumcare, 22 care preferences, 11 informal payments, 8MADM scale items, 2 open-ended questions that in-quired about the best and worst aspects of the experi-ence of care. Among these, a total of 75 questionscollected information on elements of women-centeredcare and were woven across the above domains.The final questionnaire then underwent 5-way inde-pendent translation, as has been first previously used inHungarian research, consisting of 3 independent transla-tors who worked in parallel, followed by 1 translatorwho reconciled and assembled these parallel versions,and concluded by 1 final back translation of the recon-ciled Hungarian version into English [30]. The final backtranslation was checked for accuracy by an author whois a native English speaker (NR). Four Hungarian mater-nity care users beta-tested the survey for language,length, clarity, and functionality.Survey administrationWith the help of mostly international private donorswithout vested interests, a sum of $4300 US dollars wasraised to retain the survey firm Ipsos. Ipsos maintains apanel of more than 70,000 members who are representa-tive of Hungarian internet users for age, sex, and geo-graphical location. We selected women between the agesof 18–45 with children under the age of 5 as the “target”population (total available N = 7762).SampleIpsos administered the survey to the target populationusing a quota system to ensure a representative distribu-tion regarding age, marital status, household size, educa-tion level, monthly income, settlement, and maritalstatus. Balancing the resources available with the samplesize needed to conduct a robust analysis, Ipsos stoppedthe invitations once a representative sample of 600women was achieved. Ipsos also managed data collectionfor a convenience sample (N = 657) obtained via socialmedia networks of birth and parenting organizations.Recruitment lasted for the month of October 2014. AllRubashkin et al. Reproductive Health  (2017) 14:152 Page 3 of 10respondents gave informed consent prior to initiatingthe survey.AnalysisThe research team reviewed all numeric and qualitativedata supplied by the expert panel. We assessed inter-rater agreement by using the content validity index(CVI), summing the number of experts who rated anitem as highly relevant and clear (level 3 or 4) and divid-ing by the total experts. We then averaged these scoresto generate an item-level CVI (I-CVI). We considereditems to be relevant and clear with an I-CVI scoregreater than 0.8 [26]. We reviewed all comments withequal attention, giving extra weight to repeat themes.Revisions were done carefully in dialogue between a na-tive English speaker (NR) and a native Hungarianspeaker (IS) in order to maintain clarity.We compared demographic characteristics with two-tailed z tests (for dummy variables) or Pearson Chi2 test(for categorical variables). We then compared theamount of informal payments across groups by two-tailed t or z tests (ANOVA). We employed STATA ver-sion 14.1 for all statistical calculations. Responses to anopen-ended question “What was the worst thing aboutthe care you received during your recent birth?” under-went thematic analysis [31]. Two authors (ZS and ES)read through all the responses, categorized the content,and then coded the content by hand in order to deter-mine the frequency of different themes.The Regional Ethics Committee of SemmelweisUniversity, Budapest (ref. number: 99/2014) approvedthis study. Because participation in the study was volun-tary and preserved the anonymity of the participantswith no invasive sampling techniques, the ethicscommittee did not require a formal consent process.Nonetheless, the survey opened with a discussion ofrisks, benefits, and potential harms, and then stated thatby starting the survey a woman consented to participate.Our research was conducted in full accordance with theWorld Medical Association Declaration of Helsinki.ResultsEleven of the 31 invited multi-disciplinary experts com-pleted the entire validation process. The final panelconsisted of: research and a clinical psychologists [2];obstetrician-gynecologists [2]; a lawyer expert in birth is-sues [1]; directors of non-governmental organizations[2]; a midwife [1]; a doula [1]; an epidemiologist [1]; amother [1]. One of the psychologists runs a supportgroup for new mothers, and the NGO directors lead ini-tiatives on expanding pregnancy and birth options. Thedoula herself is a mother and has supported birthingmothers in Hungary. Thus, 6 of the 11 experts had per-sonal experiences as, or close relationships with activeusers of Hungarian maternity care.Figure 1 summarizes the survey development and val-idation process. Only 3 items scored below the com-monly used I-CVI cut off at or below 0.8. The LTM3question “Is your baby during this time period living?”received an I-CVI of 0.8. Experts felt this question usedharsh language and might turn women away. Anotherquestion from LTM3, “Did you get your first prenatalvisit as early in your pregnancy as you wanted?” scored0.76; experts felt this question was not relevant to a so-cialized health system. As a group the informal paymentquestions received scores (I-CVI 0.93) above the cut offfor inclusion. However, experts consistently commentedon the lack of relevance to the intrapartum context ofFig. 1 Survey development processRubashkin et al. Reproductive Health  (2017) 14:152 Page 4 of 10Table 1 Nine new informal cash payment questionsConsidering all types of official and informal cash payments, how muchIN TOTAL did you spend (out of pocket, in cash) related just to thedelivery of your baby? This refers to the amount of cash paid after yourprenatal visits concluded.a. Total amountb. I don’t rememberc. Decline to answerBeleértve az összes hivatalos díjat és nem hivatalos hálapénzt, mennyipénzt fizetett Ön (és családja) összesen a szülésért a saját zsebéből,készpénzben? Ebbe az összegbe ne számítsa bele a szülést megelőzővizitek árát akkor sem, ha a befizetett összeg után nem kapott számlát!a. Teljes összeg: ezer FORINTb. Nem emlékszem.c. Nem kívánok válaszolni.How much of this [X amount paid] for your birth was an informal cashpayment?a. Total amountb. I don’t rememberc. Decline to answerEbből az összegből a hálapénz összege:a. ezer FORINTb. Nem emlékszem.c. Nem kívánok válaszolni.When you paid cash for your pregnancy and birth care–in the private orthe public system–what did you expect to receive in return? Choose allthat apply.I expected to…Yes/No (Select all that apply instead of Yes/No)a. Receive better quality careb. Obtain more attention from the staffc. Find a more skilled physician and/or midwifed. Wait less time to get an appointmente. Have better access to my doctor and/or midwifef. Have my chosen doctor or midwife attend my birthg. Have more control over my careh. Because I felt thankful for care I received.i. Get nothing in return. I felt is was required to pay.j. Other [text box]Amikor hálapénzt fizetett a szülésért mit várt el a pénzéért cserébe? Többválaszt is bejelölhet. “Igen”-nel és “Nem”-mel felelhet.Azt vártam, hogy...a. jobb minőségű ellátást kapjak.b. több figyelmet kapjak a személyzettől.c. jobb orvost és/vagy szülésznőt kapjak.d. kevesebbet kelljen várnom arra, hogy időpontot kapjak.e. jobb hozzáférésem legyen az orvosomhoz és/vagy szülésznőmhöz.f. a választott orvosom vagy szülésznőm legyen jelen a szülésemnél.g. legyen beleszólásom az ellátásomba.h. Azért fizettem, mert hálás voltam az ellátásért, amit kaptam.i. Nem vártam semmit viszonzásképpen. Muszáj volt fizetnem.j. Egyéb: a fentiektől eltérő dolgot vártam:When did you make the informal cash payment for your delivery?a. Before I gave birthb. After I gave birth while I was in the hospitalc. After I gave birth and went for a visit to the clinicd. I don’t rememberMikor fizetett Ön hálapénzt a szüléséért?a. A szülés előtt.b. A szülés után, amíg még a kórházban voltam.c. A szülés után, amikor vizsgálatra/ellenőrzésre mentem.d. Nem emlékszem.You spent [x amount] for all of your prenatal visits and birth care, formaland informal. Was it necessary to borrow cash from family or friends, thebank or from a credit card, or sell personal assets to cover this cost?a. Yesb. Noc. I don’t rememberÖn összesen (beleértve a hivatalos összegeket és a hálapénzt is) forintotköltött a várandósgondozásra és a szülésre. Kellett ehhez kölcsönkérniepénzt családtagoktól vagy barátoktól, esetleg banki kölcsönt felvennievagy hitelkártyán túlköltenie, vagy eladni valamilyen személyes tárgyat/tulajdont, hogy ki tudja fizetni ezt az összeget?a. Igen.b. Nem.c. Nem emlékszem.You paid an informal payment during your prenatal care or for your birth.Did your provider ask you to pay a specific amount, or did they leave itup to you to decide how much to pay?a. Yes, they asked for a specific amount.b. No, they let me decide how much to pay.c. I don’t rememberAmennyiben fizetett hálapénzt a várandósgondozás alatt és a szülésért,kérte Öntől az szülészeti ellátója, hogy fizessen egy bizonyos összegetvagy Önre bízta, hogy mennyit fizet?a. Igen, kértek egy bizonyos összeget.b. Nem, rám bízták, hogy mennyit fizetek.c. Nem emlékszemYou paid [x] amount in total for informal cash payments during yourprenatal care and birth. To whom did you make this informal cashpayments? Choose all that apply.a. A doctor in the clinicb. A nurse in the clinicc. A doctor in the hospitald. A nurse in the hospitale. A midwife in the hospitalf. A midwife at homeg. Otherh. I don’t rememberÖn ezer forint hálapénzt fizetett a várandósgondozásért és a szülésért.Kinek adta ezt a hálapénzt? Jelölje be azokat a személyeket, akinek adottpénzt! Több személyt is megjelölhet.a. Egy orvosnak a rendelőben.b. Egy nővérnek a rendelőben.c. Egy orvosnak a kórházban.d. Egy nővérnek a kórházban.e. Egy szülésznőnek a kórházban.f. Egy otthonszülést kísérő bábának.g. Másnak.h. Nem emlékszem.You said that you paid [x amount] in informal cash payments for yourpregnancy and birth care. How did you feel about this informal cashpayment?Very negative/ Somewhat negative/ Indifferent/ Somewhat positive/ VerypositiveAmennyiben fizetett hálapénzt a várandósgondozás alatt és a szülésért,hogyan érintette Önt, hogy fizetnie kellett?Nagyon rosszul érintett / Kicsit rosszul érintett / Közömbösen /Meglehetősen pozitívan érintett / Nagyon pozitívan érintettDuring your recent birth while in the hospital or at home, how oftenwere you treated poorly because of…? Check all that apply.a. Your race, ethnicity, cultural background or language spokenb. Your financial situationA legutóbbi vajúdásánál és szülésénél - akár kórházban zajlott, akár otthon- milyen gyakran bántak Önnel igazságtalanul az alábbi okokból? Jelöljemeg az összeset, amely igaz. Több választ is bejelölhet.Rubashkin et al. Reproductive Health  (2017) 14:152 Page 5 of 10questions developed for general inpatients. Table 1 liststhe nine new informal payment questions that we devel-oped with expert input.After the informal payment questions the next mostchallenging group of items referred to the overlap be-tween payments and the model of care (doctor, midwife).Experts decided that the process of paying a provider in-formally hinged on the model that the majority ofwomen select prior to delivery. In accordance with pre-vious research and their own system knowledge, expertsthen decided to use the word “chosen” (választott) torefer to the continuity prenatal relationship that womenpay for informally. The word “chosen” was then appliedto the private and public models of care to yield threemodels of chosen doctor care and one model of chosen(hospital) midwifery care. Two models of “not chosen”care represented the default model provided by the stateinsurance system. Independent home birth midwiferywas its own category. These linguistic results are shownin Table 2.Ipsos field tested the survey and confirmed that theduration of participant engagement required approxi-mately 30 min. Altogether, Ipsos sent 892 e-mail invita-tions to their panel with a response rate of 67%. Reasonsfor drop out were: 14 (1.6%) quota full, 115 (12.9%)screened out, 163 (18.3%) terminated the survey. Inaddition, 657 completed surveys were obtained throughconvenience internet sampling. Table 3 shows demo-graphic indicators for the sample with the correspondingmost recent census data listed below the table. Overall,the representative sample compared well to recentcensus data. Pearson Chi2 statistics show that the con-venience sample was statistically significantly morehighly educated women (Chi2 = 341.8, p < 0.0001), livedin the capital (Chi2 = 128.2, p < 0.0001), and had higheraverage net incomes (t = −16.02, p < 0.0001).Table 4 reveals the informal payment practices in therepresentative sample according to the model of carecategories. Excluding the categories with fewer than fiverespondents, we see that the response percentages to theinformal payment question ranged between 75 and 86%.Pearson Chi2 statistics showed that the share of womenwho paid informally was significantly different across thegroups (Chi2 = 183.6; p < 0.0001). ANOVA test showsthat the amount of informal payment is also significantlydifferent across groups (F = 6.73, p < 0.0001).Regarding informed consent practices, Table 5 showsthe responses from the representative sample as towhether a woman’s permission was obtained prior toundergoing a cesarean (N = 244) or an episiotomy (N =257). Pearson Chi2 statistics showed that the permissionpractices were significantly different across provider typesfor cesarean section (Chi2 = 39.2, p = 0.003) but were notsignificantly different for episiotomy (Chi2 = 18.6, p =0.414). MADM scores were significantly different acrosspermission categories (ANOVA results for caesarean: F =14.50, p < 0.0001, for episiotomy: F = 10.34 p < 0.0001).Table 6 shows the coded results from an open-endedquestion from LTM3. Thematic analysis of the open-ended responses (N = 1015) from the entire sample iden-tified 13 priority areas of the maternity care experience,9 of which were addressed by the questionnaire.Table 1 Nine new informal cash payment questions (Continued)c. Your sexual orientation or gender identityd. You refused care that your provider recommendede. Because you developed a birth planf. Because you did not pay an informal cash paymentNever/ Sometimes/ Usually/ Alwaysa. Az Ön bőrszíne, nemzetiségi hovatartozása, kultúrális háttere,anyanyelve miatt?b. Az Ön anyagi helyzete miatt?c. Az Ön szexuális orientációja vagy nemi identitása miattt?d. Azért, mert Ön visszautasította a szülészeti ellátója javaslatait?e. Azért, mert Ön szülési tervvel érkezett?f. Azért, mert Ön nem adott hálapénzt?Soha/néha/általában/mindigTable 2 Model of care categories with linguistic resultsWhich of these providers was the most importantsource of your prenatal care?Hungarian linguistic adaptation of model of carecategoriesConvenience N= 657 (%)Representative N= 600 (%)Chosen doctor in a private hospital system választott orvos magánkórházban 10 (1.5) 2 (0.3)Chosen doctor in a private practice választott orvos magánrendelésen 287 (43.8) 167 (28.0)Chosen doctor in a state institute választott orvos állami intézményben 119 (18.1) 184 (30.8)Chosen hospital midwife választott (kórházi) szülésznő 78 (11.9) 28 (4.7)Independent (home birth) midwife független bába 82 (12.5) 3 (0.5)I did not choose a doctor, just went to my localclinicnem választottam orvost, a helyi rendelőintézetbe/szakrendelőbe jártam68 (10.4) 155 (26.0)District public health nurse védőnő 12 (1.8) 58 (9.7)I did not go to prenatal care nem jártam várandósgondozásra 1 3 (0.5)Rubashkin et al. Reproductive Health  (2017) 14:152 Page 6 of 10DiscussionWe used a standardized and rigorous methodology to de-velop and validate a survey instrument that comprehen-sively examined maternity care experiences in Hungary,thus filling an important gap where no government-sponsored data exists. The process included collating vali-dated items from the international literature, adaptingthem to the Hungarian context by expert panel, designingregion-specific new items, and validating the content. Tothe best of our knowledge, no other group has undertakenthis task. We found that existing English-language surveyitems concerning the experience of maternity care wereclear and relevant to the Hungarian context. This is likelydue to the fact that many of the issues related to excessiveobstetric procedures, poor communication, and the lackof maternal autonomy that we found in Hungary are alsocommon in the United States and Canada [8, 18, 19].Our expert process proved effective at identifying surveydomains that required additional adaptation. For example,our maternity care experts identified that informal pay-ment questions developed for general inpatients requiredadaptation. Our expert panel integrated linguistic, system,and user expertise to develop new survey items specific tothe CEE region. We believe this was a result of the collab-oration across our diverse panel. Some argue that contentexperts should have significant research or clinical experi-ence. However, inclusion of “lay” experts has been foundto be appropriate in many situations [27] and is consistentwith the principles of patient-centered research [32].To test reliability, we administered the survey to twosamples of service users: a randomly selected representa-tive sample and a parallel convenience sample. The instru-ment performed well in both groups: it was user friendly,feasible to distribute in an online format, and captured in-formation on several domains relevant to maternal experi-ence of care during pregnancy and childbirth.In our 30-min survey 67% of the items addressed is-sues of person-centered care. We found that the extentof informed consent and autonomy (MADM scores) var-ied significantly across the model of care categories. Wealso found lower MADM scores in the women who hadcesareans and episiotomies performed without their con-sent. Lack of consent for procedures was a commontheme in the responses to the open-ended question.These findings are discussed in detail in a separate paper[33] and are supported by qualitative studies that showthat women pay informally to receive care that they per-ceive to be more respectful [10, 17]. Analysis of ourmodel of care categories showed extensive overlap be-tween informal payments and the use of the word“chosen”. Women who went to their local clinic withoutchoosing a doctor paid informally 17% of the time—thelowest frequency of all the models of care. We believeTable 3 Social demographic indicatorsConvenienceN = 657RepresentativeN = 600Age Age in years (SD)Min, Max33.7 (4.18)20, 4733.3 (4.96)21, 45Educationa(%)Less than <7 grade 0 17 (2.8)Grade 8 0 16 (2.7)Trade School 9 (1.3) 92 (15.3)High School 91 (13.9) 244 (40.7)College 256 (39.0) 167 (27.8)University diploma 301 (45.8) 64 (10.7)Settlementb(%)Capital 304 (46.3) 100 (16.7)County Seat 95 (14.5) 124 (20.7)City 151 (23.0) 200 (33.3)Village 107 (16.3) 176 (29.3)NetIncomec(thousands HUF)Mean (SD) 374 (218) 209.23 (118)Max 2250 875Missing 39 (6.5)aCensus data education, women age 20–49: Less than high school 19.6%;completed high school 39.5%; college degree and above 26.1%bCensus data settlement, entire population: Capital 17.4%; County seat 20.4%;city 31.7%; village 30.5%cCensus data income, net household 2014: average 158 thousands of forintsTable 4 Informal payments by provider type, representative sampleAnswered informal payment question,N (%)Reported paying informally,N (%)Av. amount of informalpaymentEUR (SD)Chosen doctor in a private hospital system 2 (100) 2 (100) 333 (236)Chosen doctor in a private practice 125 (75) 102 (82) 210 (128)Chosen doctor in a state institute 138 (75) 108 (78) 169 (103)Chosen hospital midwife 24 (86) 22 (92) 203 (99)Independent (home birth) midwife 3 (100) 0 (0) –I did not choose a doctor, just went to my local clinic 125 (81) 21 (17) 81 (45)District public health nurse 50 (86) 10 (20) 118 (65)I did not go to prenatal care 2 (67) 0 (0) –Total 469 (78) 265 (57) 180 (116)Rubashkin et al. Reproductive Health  (2017) 14:152 Page 7 of 10the statistically significant different distribution of infor-mal payments across the care categories validates thesecategories for future research in Hungary and the CEEregion. Because informal payments may distort healthcare services in ways that require policy intervention[21], reliable survey items are necessary to evaluate theireffects [23].LimitationsBecause we chose an expert validation process with-out extensive community involvement, we may nothave addressed additional elements of mother-centered care in this population. For example,responses to the open-ended questions indicateadditional items could have addressed the physicalstate of the maternity and newborn wards, newborncare in general, and home birth. Additionally, internetusers may not be representative of the Hungariangeneral population; a more representative samplewould require telephone or face-to-face interviewing.Finally, given the challenges of surveying the broadpreferences and outcomes of the entire maternity sys-tem, ideal distribution of our survey would capturemore pathways, especially for ethnic/minority andpoor women.ConclusionWe developed a reliable and relevant survey instru-ment to evaluate evidence-based care and maternalexperiences in Hungary. This survey instrument canbe easily adapted for use in other Central and EasternEuropean countries, where informal payments, thevariable application of evidence, and concerns withrespectful provider-patient relationships are similar.We plan to utilize the data resulting from this surveyto inform interprofessional education and elucidateTable 5 Permission for cesarean (N = 244) or episiotomy (N = 257), representative sampleYes, they asked and Igave my permission.No, they did not askmy permission.I refused theprocedure, but theystill did it.I don’t rememberCesarean Episiotomy Cesarean Episiotomy Cesarean Episiotomy Cesarean EpisiotomyChosen doctor in a private practice (%) 72 (91.1) 25 (35.2) 5 (6.3) 42 (59.2) 0 1 (1.4) 2 (2.5) 3 (4.2)Chosen doctor in a state institute (%) 79 (90.8) 27 (35.5) 6 (6.) 45 (59.2) 0 0 2 (2.3) 4 (5.2)Chosen hospital midwife in a private or stateclinic (%)4 (57.1) 7 (41.2) 2 (28.6) 9 (52.9) 0 0 1 (14.3) 1 (5.9)I did not choose a doctor, just went to my localclinic (%)37 (72.6) 16 (24.2) 9 (17.7) 46 (69.7) 1 (2.00) 1 (1.5) 4 (7.8) 3 (4.6)District public health nurse (%) 14 (70.0) 8 (29.6) 6 (30.0) 18 (66.7) 0 0 0 1 (3.7)Total (%) 206 (84.5) 83 (32.6) 28 (11.4) 160 (62.0) 1 (0.4) 2 (0.8) 9 (3.7) 12 (4.7)MADM score Mean (SD) 26.9 (7.5) 28.1 (6.5) 19.0 (5.7) 22.3 (8.3) – 23.5 (12.0) 18.4 (7.1) 23.7 (7.9)Table 6 Thematic analysis of responses to open-ended question: What was the worst thing about the care you received during yourrecent birth? (N = 1015)Explored by any items in the final survey1. No consent for interventions / interventions done against my wishes Yes2. Painful interventions (vaginal examinations, cervix stretching, episiotomy) Yes3. Doctor/midwife style Yes4. Hurrying the labor Yes5. I could not choose a comfortable position Yes6. They did not help with breastfeeding Yes7. Lacking information Yes8. Did not allow support people to be present Yes9. Problems with prenatal care Yes10. Hospital condition (room, bed, food, bathroom) No11. Newborn hospital unit No12. Children could not be with me No13. Told home birth was too dangerous NoRubashkin et al. Reproductive Health  (2017) 14:152 Page 8 of 10determinants of high quality maternity care inHungary. A survey similar to ours could be used toregularly monitor trends in Hungarian maternity careas well as for cross-country comparisons in the CEEregion, where representative data on quality maternitycare is lacking.AbbreviationsCCinBC: Changing Childbirth in British Columbia; CEE Region: Central andEastern European Region; CVI: Content Validity Index; LTM3: Listening toMothers 3; MADM: Mothers Autonomy in birth Decision Making scaleAcknowledgementsWe would like to acknowledge our expert panel and translators, withoutwhom this research would not have been possible: Experts: Balazs Balint,Agnes Czovek, Agnes Geréb, Nora Schimcsig, Katalin Varga, Erika Schmidt,Stefania Kapronczay, Linda Roszik, Peter Lobmayer, Anna Iványi, ZuzanaKriskova. Translators: János Hanák; Frigyes Tarján, Erika Solyom, ZsofiaGoreczky. Pilot testers: Anna Ternovszky, Zsuzsana Kertesz, Irén Móré andKlára Ecsedi.FundingFunding for data collection was obtained through “crowd sourcing” via theinternet website Crowdrise.com. A proposal was posted on the website, andindividual private donors contributed funds. To mitigate conflict of interest,we asked that no women who planned to participate in the studycontribute to the fund. These privately raised funds were used to retain thesurvey firm Ipsos (Thaly Kalman utca 39, Budapest Hungary). Petra Baji’sresearch was supported by the Hungarian Scientific Research Fund OTKA (PD112499). Nicholas Rubashkin’s research was supported by a Fulbrightresearch scholar grant.Open accessThe authors agree to make the supporting data available.Authors’ contributionsNR and IS were co-investigators during the entire survey validation andanalysis process. Dr. R drafted this paper and thus is first author. PBcontributed an economic perspective with survey items concerning informalpayments and analysis of the informal payments. She also conductedstatistical tests for the data contained herein. ZS and ÉS consulted on surveysampling techniques and conducted the thematic analysis of the responsesto one of the open-ended questions. SV performed the role of supervisingresearcher, working closely with Dr. R throughout the entire survey validationand analysis process. She also edited drafts and approved the finalmanuscript. All authors read and approved the final manuscript.Ethics approval and consent to participateThe Regional Ethics Committee of Semmelweis University, Budapest (ref.number: 99/2014) approved this study. Because participation in the studywas voluntary and preserved the anonymity of the participants with noinvasive sampling techniques, the ethics committee did not require a formalconsent process. Nonetheless, the survey opened with a discussion of risks,benefits, and potential harms and then stated that by starting the survey awoman consented to participate. Our research was conducted in fullaccordance with the World Medical Association Declaration of Helsinki.Consent for publicationAll authors consent to this article’s publication.Competing interestsThe authors alone are responsible for the content and writing of this paper.We declare no financial, political, intellectual, or religious interests in thisresearch.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1Departments of Global Health Sciences and Obstetrics, Gynecology, andReproductive Sciences, University of California at San Francisco, Mission Hall,Box 1224, 550 16th Street, Third Floor, San Francisco, California 94158, USA.2Institute of Behavioral Sciences, Semmelweis University, VIII. Nagyvárad tér 4.XX. Em, Budapest H-1089, Hungary. 3Department of Health Economics,Corvinus University of Budapest, Fővám tér 8. Main Building Room E113,Budapest 1093, Hungary. 4The Birth Place Lab, Faculty of Medicine, TheUniversity of British Columbia, Vancouver, Canada. 5Midwifery Program |Department of Family Practice, Suite 320 - 5950 University Boulevard,Vancouver, BC V6T 1Z3, Canada.Received: 9 June 2017 Accepted: 10 November 2017References1. Rao JK, Anderson L, Inui T, Frankel RM. Communication interventions makea difference in conversations between physicians and patients: a systematicreview of the evidence. Med Care. 2007;45(4):340–9.2. Hodnett ED, Gates S, Hofmeyr G, Sakala C. Continuous support for womenduring childbirth. Cochrane Database Syst Rev. 2013;7:CD003766. doi:10.1002/14651858.CD003766.pub5.3. Iida M, Horiuchi S, Porter SE, Pope R, Graham L, Patel S. 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Baji P, Rubashkin N, Szebik I, Stoll K, Vedam S. Informal cash payments forbirth in Hungary: are women paying to secure a known provider, respect,or quality of care? Soc Sci Med. 2017;189:86–95.•  We accept pre-submission inquiries •  Our selector tool helps you to find the most relevant journal•  We provide round the clock customer support •  Convenient online submission•  Thorough peer review•  Inclusion in PubMed and all major indexing services •  Maximum visibility for your researchSubmit your manuscript atwww.biomedcentral.com/submitSubmit your next manuscript to BioMed Central and we will help you at every step:Rubashkin et al. Reproductive Health  (2017) 14:152 Page 10 of 10


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