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Medication-related burden and patients’ lived experience with medicine: a systematic review and metasynthesis of qualitative studies
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Abstract
Objective
To explore medication-related burden (MRB) and patients’ lived experience with medicines (PLEM) without regard to particular medication therapies or medical conditions.
Data sources
MEDLINE, EMBASE, International Pharmaceutical Abstracts, PsycINFO, Global health, CINAHL and Web of Science were searched from January 2000 to August 2014 using medication burden and patients’ lived experience terms.
Synthesis methods
Synthesis was undertaken following metaethnography methods and a comparative thematic analysis technique.
Results
34 articles from 12 countries with a total of 1144 participants were included. 3 major inter-related themes emerged central to PLEM: MRB, medication related beliefs and medication taking practice. The negative impact of MRB, due to its interference on patients’ daily lives and effects on well-being, its influence on patients’ beliefs and behaviours, and a potential risk for drug-related problems (DRPs) was evident. This resulted in non-adherence and poorer outcomes (unachieved therapeutic goals and damage to patients’ health). Patients who experienced MRB interference in their life over time begin to juggle their medicines. Others continue their medicines despite experiencing MRB resulting in compromised physical, social or psychological well-being.
Conclusions
There is a shared commonality of PLEM among the studies. MRB plays a central role in influencing patients’ health and well-being, beliefs and behaviour towards medicines. Given the complexity of MRB and its impact evident from this review, there is a need for healthcare practitioners to have insight into PLEM in therapeutic care plans. Understanding PLEM is an opportunity for practitioners to identify particular MRBs that patients encounter, and provide individualised care through selection of therapeutic care plans that suit a patient's life. This may assist in helping to achieve patients’ medication-related needs, and improve medication therapy and health outcomes.
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Most cited references60
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Patient Adherence to Tuberculosis Treatment: A Systematic Review of Qualitative Research
Salla Munro, Simon A Lewin, Helen J Smith … (2007)
Introduction Tuberculosis (TB) is a global health concern, with an estimated 8.9 million new cases worldwide in 2004 and two million deaths each year [1]. It is a major contributor to the burden of disease, especially in low- and middle-income countries, where it is being fuelled by the HIV/AIDS epidemic [2]. DOTS (directly observed treatment, short course) is the internationally recommended control strategy for TB [3]. This strategy includes the delivery of a standard short course of drugs, lasting 6 mo for new patients and 8 mo for retreatment patients, to individuals diagnosed with TB. The delivery includes the direct observation of therapy (DOT), either by a health worker or by someone nominated by the health worker and the patient for this purpose (sometimes called a DOT supporter). The strategy has been promoted widely and implemented globally. Up to half of all of patients with TB do not complete treatment [4], which contributes to prolonged infectiousness, drug resistance, relapse, and death [5]. The difficulty experienced by patients following a particular treatment regimen has raised awareness of adherence as a complex behavioural issue, influenced by many factors [6], including gender and the impact of HIV/AIDS. WHO has attempted to classify factors that influence adherence to TB treatment based on a cursory review of key papers [6], but the impact of gender [7] and HIV status [8] on adherence are less well documented in the qualitative literature. Efforts to improve treatment outcomes require a better understanding of the particular barriers to and facilitators of adherence to TB treatment, and of patient experiences of taking treatment [9]. Qualitative research can contribute to this understanding and help interpret the findings of quantitative studies of the effectiveness of adherence-promoting interventions [10]. The volume of such qualitative research is growing and we believe that one way to draw useful lessons from this literature is by synthesising the findings of these studies. Systematic synthesis of relevant qualitative studies of TB treatment adherence can provide more complete knowledge than that derived from individual studies alone. It can assist in the interpretation of findings of single studies; help explain variation or conflicts in study findings; enable the development of new theories; and help inform the design of new interventions. In addition, it may allow the identification of gaps in existing adherence research. In this review we consider the perspectives of patients, caregivers, and health care providers regarding adherence to TB treatment. The findings of this review will have implications for a range of stakeholders including nongovernment organisations, national policy makers, and international bodies working towards reducing the global health burden of TB. Methods We followed a meta-ethnographic approach [11], the steps of which are outlined in Figure 1, to synthesise findings across included studies. This systematic approach translates ideas, concepts, and metaphors across different studies and is increasingly seen as a favourable approach to synthesising qualitative health research [11,12]. The research team included three social scientists (SM, SL, HS) and three clinical researchers (JV, AF, ME). The social scientists had different disciplinary backgrounds. Figure 1 Meta-ethnography Process Inclusion Criteria We included studies that examined adherence or nonadherence to preventive or curative TB treatments and described the perspectives of patients, care givers, or health care providers. We included studies from any discipline or theoretical tradition that used qualitative methods. We included papers that reported qualitative research only, as well as research using qualitative and quantitative methods (mixed method) that reported qualitative findings. Both published and unpublished studies reported in English were considered. Because of resource limitations, papers published in other languages were not considered. Search Strategy and Study Selection Figure 2 maps out the process by which articles were selected for our systematic review. We searched 19 databases, using the keywords: “TB AND (adherence OR concordance OR compliance)” from 1966, where available, until 16 February 2005 (see Table S1 for search results). This process was complemented by reviewing citations, searching in Google Scholar, and expert referrals. Additional articles were included as they became available. We used the search, assessment, and retrieval process outlined by Barroso et al. [13]. SM scanned more than 7,000 citations identified in the various databases and retrieved abstracts for potentially relevant studies (n = 2,162). Approximately 10% (n = 222) of these were also reviewed by JV to validate the selection of articles. Disagreements (n = 17 papers) were resolved by discussion and reference to the full article. Thereafter, SM screened the titles and abstracts of potentially relevant studies, excluding 1,536 papers and retrieving potentially eligible papers (n = 626). After scanning the full text, 560 of these articles were not considered eligible and 66 were considered potentially eligible, based on our inclusion criteria. The abstracts of these were assessed by SM and SL, and ineligible and duplicate papers were excluded, leaving 47 that were considered eligible. Two independent reviewers then read the full paper of each study, following which three more papers were excluded because they did not include qualitative data or because they had insufficient descriptions of data collection or analysis methods. The final synthesis therefore involved 44 papers. Figure 2 Search Process and Study Selection Quality Assessment We decided to assess the quality of individual studies using a checklist based on common elements from existing criteria for qualitative study quality assessment [10,14–17] (Table 1). These existing checklists are published and peer reviewed, but unlikely to be validated; only the Critical Appraisal Skills Programme criteria [17] have been used by other meta-ethnographers [18]. Evaluating study quality allowed us to describe the range of quality across included studies. Two reviewers independently assessed study quality using a pretested form and resolved differences by discussion. No studies were excluded on the basis of quality. This approach was taken for two reasons: first, both the original authors of the meta-ethnographic approach [11], and other users of the method [19], have found that poorer-quality studies tend to contribute less to the synthesis. The synthesis therefore becomes “weighted” towards the findings of the better-quality studies. Second, there is currently no consensus among qualitative researchers on the role of quality criteria and how they should be applied [10], and there is ongoing debate about how study quality should be assessed for the purposes of systematic reviews [20]. Table 1 Methodological Quality of Included Studies (n = 44) Synthesis Based on the meta-ethnography approach described by Noblit and Hare [11], we used reciprocal translation, analogous to constant comparison in primary qualitative research, to compare the themes identified in each study. We then conducted a “line-of-argument synthesis,” an approach similar to grounded theory in primary research, to determine a model of factors influencing treatment adherence. From this process we derived hypotheses relating to the reorganisation of treatment and care to improve adherence. The synthesis process is described below and illustrated in Figure 1. Identifying themes and concepts. We identified concepts, themes, and patterns by reading and rereading the included studies. In this process, we understood primary themes or first-order constructs as reflecting participants' understandings, as reported in the included studies (usually found in the results section of an article). Secondary themes or second-order constructs were understood as interpretations of participants' understandings made by authors of these studies (and usually found in the discussion and conclusion section of an article). However, we recognise that all reported data are the product of author interpretation [21]. One author (SM) extracted first- and second-order constructs from the articles, plus relevant data on study context, participants, treatment type, and methods using a standard form. The rest of the study team independently extracted data from half of the studies, but found no major differences. Although the foci of the studies were not all directly comparable, the study team identified a number of recurring first- and second-order constructs. Determining how the studies are related. We used thematic analysis to inductively develop categories from the first-order themes and concepts identified in the included studies. These categories represent related themes and concepts and initially included: family, community, and social support; professional practice and organisation of care; financial burden; personal characteristics as related to treatment adherence; access to services; disease progression; and knowledge, beliefs and attitudes towards treatment. We revised and merged these categories by discussing together as a team how they were related. We followed a similar process for second-order constructs identified from the included studies. Reciprocal translation of studies. Following the meta-ethnographic method closely, we compared the concepts and themes in one article with the concepts and themes in others. Translation involves the comparison of themes across papers and an attempt to “match” themes from one paper with themes from another, ensuring that a key theme captures similar themes from different papers (see Britten, et al. for further description [12]). We approached the reciprocal translation by arranging each paper chronologically, then comparing the themes and concepts from paper 1 with paper 2, and the synthesis of these two papers with paper 3, and so on. We began with the categories identified in the process described above, but incorporated others as they emerged. Two authors conducted the translation independently, returning to the full-text papers frequently throughout. In this review our aim was to explore adherence to TB treatment without confining this variable to a specific population or subgroup, but in doing so we were careful not to inappropriately synthesize the findings of heterogenous studies. In the process of comparing the studies against each other, we looked for explicit differences between the studies in relation to a range of factors including their geographic location, socioeconomic conditions, and the type of treatment programme. From the reciprocal translation we were able to construct tables showing each theme and related subthemes, and narratives to explain each theme. Synthesising translations. We chose to synthesise the results of the translation independently to account for different interpretations by disciplinary background. To develop an overarching framework (or third-order interpretation), we listed our translated themes and subthemes in a table, juxtaposed with secondary themes derived from author interpretations (see Table 2). Each member of the research team then independently developed an overarching framework by considering if and how the translations and authors' interpretations linked together. From this we produced a model (Figure 3) and generated hypotheses, in a “line-of-argument” synthesis. Line-of-argument syntheses create new models, theories, or understanding rather than a description of the synthesised papers [11]. Table 2 Primary and Secondary Themes Emerging from the Included Studies Figure 3 Model of Factors Affecting Adherence We attempted to explore systematically the influence of socioeconomic status and geographic location on the findings of our synthesis. However, it was difficult to determine many patterns except those highlighted specifically by authors of the primary research. We realised that synthesising studies from a variety of contexts would present challenges, but also felt that including these studies would provide an opportunity in the synthesis to explore the differences between the contexts, if these existed. Similarly, we chose to include studies examining adherence to latent TB treatment as well as adherence by injecting drug users (IDUs) and homeless people, with specific attention being paid to the ways that the issues raised in these studies differed from those focused on active TB in other populations. Again, few differences emerged. Results Description of Studies Forty-four studies published between 1969 and 2006 were included in the review. The studies were conducted in Africa (14), North America (9), South (8) and East Asia (8), Latin America (2), and Europe (2). It was difficult to discern the study setting from the published reports, but most were conducted within a clinic or health service setting (see Table 3). Most studies were concerned with curative TB treatment (33); others focused on preventive treatment (8) and some considered both (2). Most of the studies involved TB patients, often also including community members and health care workers. Three studies involved IDUs and homeless individuals. Approximately 3,213 individuals were involved in the included studies. We found few studies that justified their use of a qualitative approach (n = 13) or specified the underlying theoretical framework (n = 10), and few authors reported on their role as researcher (n = 12) (Table 1). In 12 papers the method of analysis was clearly described, but some derivation of thematic analysis appeared to be used in others. Although several studies seemed to have high face validity, they often scored poorly on our quality assessment instrument, possibly due to the instrument's ability to measure only the quality of reporting. Table 3 Characteristics of Primary Studies Included in this Review Table 3 Extended. Description of Themes Eight primary themes (identified from participants' understandings) and six secondary themes (derived from authors' interpretations) arose from the synthesis (Table 2). Each primary theme is described in Boxes 1–8 using direct quotes to illustrate meaning. Box 1: Organisation of Treatment and Care for TB Patients “The patients do not have the adequate means to go to the health centre to take their drugs. They just have camel, donkey or carts… And sometimes, the state of some patients prevents them from using these” (male family member of TB patient, Burkina Faso) [31]. “A dirty place can affect the psychology. It makes people lose heart and feel unenthusiastic about continuing treatment” (female participant with TB, Vietnam) [26]. “It just does not make sense as to why a grown up person should be given medicines by someone else. I felt very awkward, and tried to take my medicines myself” (male TB patient, Pakistan [22]. “…and I was afraid to go to the doctor, I thought he would scold me because I missed treatment for a day. For this reason, I didn't go back to get more pills. I was afraid…” (female participant, Bolivia) [32]. “The minute you tell them you're homeless they treat you real snobbish… They treat you like a dog down there once you get past the triage nurse…” (female TB patient, United States) [50]. ‘…It did help, cos I really needed assurance that it was definitely going to be [cured] and doctor spent a lot of time with me. And they were really, really um, they were outstanding there” (male TB patient, United Kingdom) [30]. Box 2: Interpretations of Illness and Wellness “…When I feel better, I don't take the tablets. Only when I feel pain” (completer, South Africa) [51]. “…She said ‘no no no I do not have TB any more' because she no longer has blood in her sputum” (provider, Indonesia) [46]. “Well, if you know a little bit about the disease and, like we say, if it's latent… you are not sick. It's only.. if it becomes active, then you are liable to be sick and probably very sick. So then you consider taking the medicine that is terribly bad: which is worse? That's when you weigh what is best for you” (provider, United States) [35]. “I think that I feel healthy, my lungs are good, but I have a bit of fear that the sickness will return… But as I told you, I don't want to take these pills, because they make me sick, they hurt me…. “ (female TB patient, Bolivia) [32]. Box 3: Financial Burden of TB Treatment “It's a bit difficult, because, as I told you, the radiography and the control smear cost more than 100B; the consult costs 15B…it will cost me almost 150B to start treatment again. At this moment, I don't even have the money for the trip to the hospital...” (male TB patient, Bolivia) [32]. “TB here is closely related to social and economic problems. People live in densely populated areas, their income is poor, and they don't understand about TB” (provider, Indonesia) [46]. “We cannot remain out of a job for long. As soon as we feel better we would like to go to work… If I cannot earn, my whole family will suffer” (male TB patient, South Africa) [51]. “Typically it [treatment] would be three months.. that's a long time for anyone to be available without any compensation… it's tremendously a matter of economics and economics only…” (male TB patient, Canada) [57]. Box 4: Knowledge, Attitudes, and Beliefs about TB Treatment “He believed that he should always use the expensive tablets and not the tablets from [the health care facility]. The … tablets were not correct with the problem inside, and the colour of the tablets doesn't look right” (participant, Indonesia) [33]. “No doctor is able to cure this” (patient, South Africa) [34]. “That's just like basic common sense, this is no test… if the doctor says to us take these tablets then that's common sense.” (male TB patient, UK) [30]. “…And when you take medications, these bugs will die, he told me. The medications kill the bugs. This is what I've been told, but I'm not sure. It seems uncertain to me. Because the pills didn't help me….” (female TB patient, Bolivia) [32]. “…a lot of people don't take the medicine because they feel that taking it doesn't do any good for their health” (female noncompliant patient on prophylaxis, US) [53]. Box 5: Law and Immigration “Because the nurse tells us that here they have a record of people who have TB, and when they go to apply for a job it shows up on the record that they have TB and it was untreated, they need [the completion record] for the job” (male Vietnamese refugee patient, US) [53]. Box 6. Personal Characteristics and Adherence Behavior “How would somone who starts drinking early in the morning visit the clinic? Some patients consume alcohol daily. They would rather decide to interrupt their treatment, than discarding their drinking habit” (male respondent, South Africa) [40]. “…When my husband went back home, he was angry with himself and he was upset about everything. He refused to eat and rejected his medicine. He threw his pills away. He did not take TB medicine at all” (female HIV+ TB patient, Thailand) [64]. “[interviewer: ‘Some people don't want to take their pills]’ Stupid people, sorry to say that” (male TB patient, UK) [30]. “I missed taking some pills because I was drunk or high on drugs” (female TB patient, US) [59]. Box 7: The Influence of Side Effects on Treatment Adherence “…Unpleasant metallic taste in his mouth… asked if a non-vegetarian diet would improve this problem. He was laughed at by the [provider] along with a number of others in the clinic and some personal remarks were made…he finally left treatment” (male TB patient, India) [24]. “I said no wonder they defaulted, many of them defaulted, you know, because it is [side effects] just too much, it is just too much …” (TB patient, UK) [30]. “These tablets let one's body itches for the whole day. I know someone who interrupted this treatment because of this problem.”(male TB patient, South Africa) [38]. “…I don't want to take these pills, because they make me sick, they hurt me…” (female TB patient, Bolivia) [32]. Box 8: Family, Community, and Household Influences “I arrive early in the morning so that people could not see me. I used to conceal my illness from people… People think that we are the filthiest people… it was really difficult to accept that I have TB” (male patient, South Africa) [40]. “We are two sisters and marriage arrangements have been made with men from one family. If my (future) family-in-law knows that I have TB they will be sure then to break the engagement...I'm worried for my sister. Her engagement also could break off because of my sickness” (female patient, Pakistan) [55]. “Just pick up the medication even if you don't use it” (patient advice to another patient on preventive treatment, US) [53]. “…I must have responsibility to take care of my child… If I die, who will take care of her? …. When I think of my child… I must be cured. This made me feel I must take the medicine” (female HIV-positive TB patient, Thailand) [64]. “…It was very important, I had my sister and my ex-girlfriend and it was really, really important to have someone, you know, to give you support especially when you don't know much about the disease” (male TB patient, UK) [30]. “…Since I have three children that I need to support… this worried me more” (male TB patient, Bolivia) [32]. We found no discernible patterns when we explored the influence of factors such as geographic location, socioeconomic status, latent or active TB, type of treatment programme, or special groups such as IDUs or the homeless. Although some studies differentiated between patients receiving treatment in urban and rural areas, no strong differences emerged between these settings, and we therefore judged it appropriate to synthesize findings across all studies. Any differences that emerged between studies with regard to specific factors are noted in the text below. Organisation of Treatment and Care for TB Patients For most patients, access to a health care facility depended on distance and available transport as well as their physical condition. One study indicated that, although the intention was for a DOT supporter to visit the patient's home, in practice the patient had to walk to the supporter's home [22]. This proved especially difficult for patients with severe symptoms [22–25]. One study noted that access to health care facilities was better in urban areas than rural areas [26], and both patients [27,28] and providers [29] noted that adherence was compromised if the distance from patients' homes to the nearest clinic was too great. If patients' homes were close to a clinic, however, the patients could attend regularly [30]. For patients on DOT, the time needed to present for direct observation of treatment-taking compromised their ability to attend to other daily tasks [25,31,32]. In one study, patients found private practitioners more accessible [26]. Problems manifesting specifically at health facilities included long waiting times, queues, lack of privacy, inconvenient appointment times [23,26–28,31–35], and the poor upkeep of clinics [26,27]. Many studies reported that patients experienced difficulty in accessing treatment at health care facilities because of inconvenient opening hours and provider absenteeism [22,23,31,37–38]. Poor TB medication availability at health care facilities was highlighted by patients [23,33,36,38] and providers [29]. For example, one study reported that a health care worker sold TB medication that should have been freely available [31]. A patient's relationship with the treatment provider also appeared to influence adherence. A large number of studies indicated that poor follow-up by providers [33,36,39], and maltreatment by providers [23,24,31,39–41], such as scolding a patient for missing appointments, resulted in nonadherence. In contrast, other studies noted the positive impact of increased provider–patient contact on adherence [26,39,42,43]. Some studies highlighted how treatment requirements could impact on patient attitudes towards treatment and thus on adherence behaviour. Patients could “become tired” of taking medications [26,30,40,44,45], discontinuing because of the length of treatment [38,40,45,46], the number of tablets [24], or fear of painful injections or drugs [29,47], as noted by both providers and patients. Some patients reported they found it difficult to meet the requirements of DOT [24,25,32,39,40]. In a number of studies conducted with patients being directly observed [22,24,34,42], adherence to treatment was facilitated by flexibility and patient choice. The continuity of the treatment process was important to patients [39,42], and irregular supervision by a family member sometimes compromised the treatment programme [22,23]. Some patients viewed direct observation negatively [22–25,40,45,48], interpreting it as distrust, and in one study describing the process as “doing time” [49]. In contrast, a study conducted with IDUs indicated that these patients appreciated the direct observation component of care because they received their treatment together with their methadone from a street nurse [50]. Interpretations of Illness and Wellness Studies in our synthesis reported that patients stopped treatment because they felt better and thought that they were cured [23,24,39,40,45,47,49,51] or because their symptoms abated [47,52,53]. Some studies noted that patients who felt worse than before treatment [23,24,32] or saw no improvement in their condition [22–24,46] might be more likely to interrupt treatment. A study conducted in The Gambia reported that migrants arrived in the country to receive TB treatment and returned home once they felt better [27]. This problem may be linked to patients' conceptions of recovery, and of the aetiology of TB. Treatment interruption was also reportedly related to perceptions about TB as a disease; some patients did not believe that they had TB, only wanted a cure for their symptoms and ceased treatment once these lessened [33,43,52]. Another study reported that patients were motivated to continue treatment as a consequence of symptom relief [30]. One study conducted in China noted that patients often continued to take medication after the necessary period of six months, and some patients would continue with treatment despite not having any symptoms, because they believed that the “roots” of the disease needed to be removed [54]. Some patients needed help in taking their medication when they were too weak [23], while others on preventive treatment and with no symptoms hesitated to even begin treatment, thinking that it could make them ill [35]. Three studies found that patients experiencing severe symptoms were more likely to adhere [39,43,54], possibly due to a fear of becoming more ill. Financial Burden of TB Treatment Several studies indicated that having TB had consequences for work [22–24, 26,27,29,32,34,42,52,54–56]. Studies suggested that patients hide their disease for fear that employers may discover that they have TB, with consequent effects on adherence. Additional work-related issues included difficulty in obtaining sick leave for treatment; fear of asking for money to purchase TB drugs; and fear of losing work or dismissal [26,29,36,55]. The reports showed how some patients prioritised work over taking treatment—and for many there appeared to be a “choice” between work and adherence [23,24,26,29,32,34,36,37,42,45,54]. More common in rural areas, this was not a real “choice” but rather a conflict between attending for clinic-based treatment and the need to earn a living. This was manifested in patients feeling “forced” to choose between work and attending treatment [26]; patients having “no choice” but to abandon treatment because it was too difficult to combine the two [29]; and patients not being able to afford treatment, but if they sought work, being unable to attend for treatment [32]. A study with inner-city homeless people on preventive treatment reported that treatment posed an economic barrier for them because they often worked out of town [57]. Patients also expressed guilt over the impact that the disease had on their family livelihoods [31]. Several studies found that patients had more pressing issues to attend to in everyday life [24,29,31,32,40,42,45,56], such as taking care of family. Economic constraints were especially noted in rural areas, especially for patients on preventive treatment [51]. Patients often explained treatment interruption by noting the costs of treatment [23,26,29,32,33]. In some settings, patients reported that drugs were expensive [29,36] and, where treatment itself was free, hidden costs such as hospital stays [29], reviews of X-ray results, and transport costs could be high. In some cases providers acknowledged patients' financial constraints [31]. However, there were examples of doctors not accepting that costs caused patients to stop taking treatment because, from the doctors' perspective, treatment was provided at no cost [32]. Failure to accept patients' reasons for nonadherence may contribute to the negative attitudes sometimes expressed by providers towards defaulting patients, resulting in difficulties in patients returning to treatment following missed appointments. Conflicts between treatment and work and the hidden costs of treatment, resulting in expenses exceeding resources [22,26–28,31,32,34,42,43,48,54,55], could push people into poverty. This possibility was cited both by health professionals and by patients as a reason for nonadherence [23,26,32,37,42,54–56]. Males (as head of households and often sole wage earners) tended to cite this reason more frequently than females [26,37,42,55]. In societies where female or adolescent patients depend on family for financial support (particularly India and Pakistan), poverty was reported as a major reason for nonadherence to treatment [22,23,36,51,55]. For patients living in poverty, the quality of food consumed while on TB treatment was reported to affect adherence [22,26,27,29,37,45,54]. Patients reported not being able to take medication on an empty stomach, or being unable to remain in hospital due to a lack of free food [26,29,37,45,54]. Knowledge, Attitudes, and Beliefs about TB Treatment Many studies centred on the influence of patients' understanding of treatment, including its duration and the consequences of defaulting, on adherence to treatment [23,24,26–28,33,34,36,38–40,42,44,46,52,57]. The long treatment period was poorly understood by patients [23,26,28,38–40,46,52]; and adherence appeared to be facilitated where patients understood the importance of completing treatment [24,26,32,36,39,44,55,58,59]. One study on adherence to prophylaxis reported that nonadherent patients had little information on TB as a disease, but were very aware of the potential adverse effects caused by treatment [44]. Patients' beliefs about the efficacy of treatment, both positive [39,41,52,59] and negative [22,23,26,28,32,34,36,39,44,52,54–56], may impact on adherence. Patients may question the efficacy of the pills or think that only injections are “medicine” [22], or even question the validity of diagnostic tests that are not considered sophisticated enough for such a dangerous disease [52]. Belief in treatment efficacy appeared to be related to patient confidence in the medical system [25,35,42]; in some cases community-based treatment programmes increased confidence among community members that TB could be cured [37,55]. Another study noted that patients preferred to consult traditional healers [34]. Fear and denial of diagnosis were common themes across the included studies. Some patients had difficulty accepting their diagnosis, often wanting to hide their disease [23,29,33,40,42,43,55,56]. In other studies, patients' desire to be cured was cited as a motivator for adherence in people presenting with TB symptoms [30,41,43,46,58,59], and patients' fear of the negative consequences of irregular treatment was associated with treatment adherence [30,32,39,54]. Patients could be nonadherent if they were taking other western [46] or traditional [51,52] medicines and perceived there to be negative consequences if these were taken concurrently with TB medication. Two studies mentioned a relationship between pregnancy and nonadherence [54,55], one of which noted that female patients believed that pregnancy would increase intolerance to drugs and make TB drugs ineffective. Law and Immigration In studies with IDUs and homeless people, mainly conducted in the US, legal and immigration requirements had an important influence on whether people adhered to prophylactic regimens. For refugees entering the US with inactive TB, obtaining certification of preventive treatment completion was a motivator for returning to the clinic [53]. Others also on preventive treatment were concerned that TB would affect their immigration status [60], that their illegal residence status would be discovered when accessing treatment [61], or that they would be incarcerated [62]. Some patients simply stated that they adhered because it was legally required [59]. In The Gambia, nonadherence was attributed by staff to Senegalese patients coming to the country for free treatment and returning home when feeling better [27]. Personal Characteristics and Adherence Behaviour Patients and providers thought that an individual's personal character determined whether they would adhere to treatment or not [24,25,28,36–38,49,57,63]. Substance abuse was noted frequently as a barrier [24,25,28,36–38,49,57,63]. Patients with mental illness [49,57]; particular ethnic groups, such as Hispanic patients in the US [49]; older and younger age groups [42,49]; and those who were residentially mobile [25,27,49,62] were considered to be at “high risk” for nonadherence by providers and patients. Religion [30,49] and personal motivation [22,27,37,39,46,54,57] were regarded as important influences on TB treatment adherence. Female patients were perceived as being more motivated [38,57], but in some countries they required permission from men or heads of household to attend treatment [27,51]. Two studies indicated that female patients who were, or wanted to be, pregnant were less likely to adhere to treatment as they perceived the medication to be harmful [54,57]. Some providers expressed the opinion that difficulties with adherence lay almost entirely with the patients [46], and used labels such as “difficult cases” for nonadherent patients [24,27,38,53]. Nonadherent patients were judged to lack interest [39], to be lazy and not care [53], or to want to remain sick to qualify for financial support [41]. Patients were criticised for not actively seeking treatment [26,29], and in one case patient characteristics were used to identify and exclude from treatment those considered at higher risk for nonadherence [25]. Wealthier, more educated people were deemed more likely to adhere [29], and illiterate patients more likely to default [22]. Two studies noted that a structured environment away from home could facilitate adherence [28,57]. Studies involving people living with HIV/AIDS noted the relationship between adherence and coping psychologically with their HIV diagnosis [64,65]. Personal agency was an important aspect of adherence behaviour; self-administering patients [22] and those who developed their own reminders adhered readily [54]. It appeared to be easier for male than female patients to be in control of the treatment process, but in one study patients felt the DOT system had transformed them from an adult to a minor, because it prevented them from managing their own treatment [42]. Treatment Side Effects and Adherence The influence of side effects—real, anticipated, or culturally interpreted—on adherence to treatment was mentioned in a number of studies [24,32,34,38,39,46,53,54,58]. Some patients reported stopping medication because of adverse effects [44,46] while others reported that they were not informed about side effects and what to do to counter them [25,34,58]. In some cases, patients had not communicated side effects to providers [38]; in others, the health care worker had not given attention to the side effects that patients reported [24,32,36], or had responded derisively to the patient's attempt to enquire about them [24]. Few patients acknowledged that side effects had influenced their decision to abandon treatment [51,54]. Cultural interpretations of side effects varied. For example, Vietnamese refugees with inactive TB interpreted treatment side effects as “hot” or “non-hot” and countered these effects differently [36]. Family, Community, and Household Influences A main theme across the included studies was the influence of community members or peers on treatment-taking behaviour [33,53,58], and the strong influence of stigma among family and friends [22,26–28,34,36,40,42,46,52,55,56,58,59,61,64]. TB patients may hide their diagnosis [26,27,29,34,37,38,40,42,56], and feel guilt and shame because of the disease [26,31,33,34,42,52]. Stigma may also make patients afraid to ask for support from their employer to purchase medication, thereby reducing adherence [29,65]. Sometimes a patient's role and responsibilities in the family could motivate them to adhere to treatment in order to recover and resume those duties [22,40,43,58,64,65]. But responsibilities in the home, such as providing income and caring for children, also reduced the likelihood of adherence for some [32]. Family support, including financial assistance, collecting medication, and emotional support, appeared to be a strong influence on patient adherence to treatment [22,26,27,29,34,36,38,40,42,52,55,56,58,59,61,64]. In some cases patients on treatment became increasingly demoralised and more likely to become nonadherent as family support weakened [23]. Providers in a study in Vietnam noted that support for the patients seemed to exist only in the family [29]. Having family members observe treatment taking was considered important for some patients, especially if the observer was a decision maker in the family [53], or a respected family member [48]. Husbands and other males' support was considered important for female patients [53]. Providers in one study noted that patients also could support each other through their treatment course [45]. Several studies reported that TB status could affect marriage [22,27,34,36,42,44,55,56]. In some cultures, females diagnosed with TB are at risk of divorce, of their husband taking a second wife, or of being sent to their natal homes [27,36,43,55]. In South Africa, red urine (a side effect of medication) was interpreted as harmful to the partner, causing abstinence from sex and thus familial disharmony and consequently potential nonadherence [34]. In Pakistan, parents' perceptions of marriage prospects influence treatment taking or avoidance among unmarried children [22,43,55]. Discussion The themes identified in this interpretive review were intricately linked and likely to have a combined effect on patient adherence to TB treatment. Secondary interpretations (by authors of included papers) allude to the complex, dynamic nature of adherence to TB treatment. One author suggested that patients experienced three layers of barriers to adherence: attending the health care facility initially, attending repeatedly, and experiences while there [31]. The layers were considered to be interlinked and exacerbated by geographic, economic, and gender inequalities; and patient decisions in relation to treatment taking were thought likely to shift for various reasons during the treatment course. Other authors considered adherence a chain of responsibilities including patients' behaviour, health care workers' conduct, and decision makers' and society's outlook [58]. These secondary (author) interpretations influenced our approach towards a higher-order interpretation (third-order interpretation), which distilled the translations into a whole, more complete interpretation. Based on the translated themes and secondary interpretations, we developed a model to depict our understanding of the main influences on adherence (Figure 3). Components of the model include structural, personal, and health service factors influencing adherence, as well as social context. We have presented structural factors and health service factors separately, instead of as a single “health systems” category, because we felt that some interventions could be directed towards wider society-level factors while others could intend to influence the person and the health care service. Structural Factors: Poverty, Gender, and Discrimination Structural factors are those factors present in society that influence treatment-taking behaviour, but over which a patient has little personal control. Structural factors have been defined as barriers or facilitators that relate to economic, social, policy, organisational, or other aspects of the environment [66]. Factors such as gender and poverty determine individual responses to treatment and subsequent behaviour; and they interact with a patient's social context, their personal characteristics, and the health care service. TB programme managers frequently assume that a willingness to adhere must be instilled in patients in order to improve adherence rates. Our synthesis has found that even where patients are willing to adhere, structural factors such as poverty and gender discrimination may prevent them from doing so. It is recognised that incorporating patients' views in medical practice often obscures the real constraints on agency that some patients experience [9]. In our synthesis, structural factors were discussed in various ways, with poverty remaining one of the most important of these for treatment taking, especially when linked to health care service factors, such as poorly accessible, poorly equipped, and distant clinics. Our findings support the assertion that interventions to increase adherence should focus not only on the patient but also on the wider context and the health care system [67]. There is a need for a shift in perspective to give greater attention to both the social and economic environment in relation to TB infection, of which the beginnings can already be seen in the international policy arena [68]. Patient Factors: Motivation, Knowledge, Beliefs, and Attitudes and Interpretations of Illness and Wellness Patient choice in taking treatment is framed by the physiological and psychological impacts of the disease and also by the social and cultural structures in which the person is immersed [68]. Patient motivation and willingness, and the effect of incentives on treatment taking, have received some attention [69]. However, it remains unclear whether the incentive, or the attention received by the patient, serves as the primary source of motivation [67]. Caution should therefore be exercised when attributing adherence solely to “personal motivation” [22,27,37,39,46,54,57], because not only can important influences be ignored, but this factor is difficult to modify or even operationalise. We found that personal and social factors, including poverty and social marginalisation, may be used by some providers to identify patients at risk of nonadherence to their medication regimen. However, it cannot be assumed that all individuals sharing a particular characteristic face the same barriers to adherence. Nonadherence can be a product of programme failures, such as an inadequate supply of drugs, rather than patient-related problems or failures [24]. Our synthesis also found that patient knowledge, attitudes, and beliefs about the disease TB, TB treatment, and patient interpretations of illness and wellness, can act as a “filter” for the information and treatment offered by the health services. The influence of patients' interpretation of various illnesses on their adherence behaviour is well documented, and it is recognised that patients may interpret the themes of illness, wellness, and disease differently from health professionals [70–73], highlighting the distinctions between lay and biomedical understandings of TB [10]. This is unlikely to be the only influence on treatment taking, however, and patient interpretations can interact with structural and health care service factors as well as with social context. Social Context The influence of social context on treatment adherence was apparent in all included studies. The community, household, and health care service helped in countering the shame and guilt that patients with TB experienced, and also offered support in maintaining treatment taking. Social support can help patients overcome structural and personal barriers, and may influence their knowledge, attitudes, and beliefs. Conversely, community and family members' attitudes may influence a patient's decision to stop taking TB treatment. In such circumstances, community-based TB treatment programmes and stronger involvement of local social networks to support TB patients may be justified [6]. Health Care Service Factors Factors related to the provision of health care services emerged strongly in the synthesis. Flexibility and choice in treatment, and options that maintain patient autonomy in treatment taking, appeared to run contrary to the traditional organisation of many TB services [6,10]. These problems were exacerbated by programme failures, such as inadequate supplies of drugs [23,33,36,38] and difficulties in consulting providers [22,23,31,36–38]. DOT at a health care facility often meant that a patient had to give up part of their working day to attend [22,23]. However, responsibilities in the home, including providing for their family, may be given priority over treatment adherence by patients. Other health care service factors, such as long waiting times and inconvenient opening times in clinics, add to economic discomfort and social disruption for patients [49], and negatively influence adherence. The studies suggest that patients often face a choice between employment and taking medication for TB; and there is evidence that patients consciously estimate the opportunity costs of taking treatment. Study Limitations The majority of studies included in this synthesis were conducted in developing countries; the findings are therefore most applicable to low- and middle-income countries that carry the greatest burden of TB disease and where interventions to improve treatment completion are needed urgently. The findings may also be applicable to countries with better resources; indeed, a meta-ethnography of treatment taking in high-income countries showed findings similar in many ways to those of our study [74]. The clustering of studies by region may have been due to the difficulties of locating primary studies, and may have produced some of the similarities between issues described by participants. Studies often included participants from several socioeconomic strata; did not always contain a detailed description of the treatment regimen; and did not explicitly consider gender in treatment adherence. Therefore it was not always possible to tease out similarities or differences in the identified themes based on these characteristics. We identified some patterns relating to the type of treatment intervention—for example, direct observation versus patient-administered treatment—but the majority of studies did not describe adequately interventions or treatment regimens. Our observations regarding gender differences in taking TB treatment are dependent largely on the information provided by original authors. Collecting author (secondary) interpretations proved difficult; most authors maintained a descriptive style in presenting their findings and so the distinction between findings and interpretation was often not clear. It is important to consider the effect on the review findings of combining studies from different theoretical traditions, and this is widely debated. We found that the level of interpretation in the included studies was fairly basic—most were descriptive studies that used thematic analysis to identify key themes and did not draw extensively on theory or on a particular theoretical tradition. While this made it more feasible to combine the study findings, it also meant we were unable to explore any differences in interpretation of factors affecting adherence in studies conducted within different theoretical frameworks. Implications for Policy and Practice Using the reconceptualised model of factors influencing adherence to TB treatment (Figure 3), we consider it important that policy makers, practitioners, and patient support groups acknowledge: patient autonomy in the treatment process; the importance of patient-centred interventions that encourage shared decision-making regarding treatment; the role of support systems tailored to patient needs; the role of informal, societal structures in reinforcing adherence through patient support; and the influence of poverty and gender on patients and their treatment adherence. New interventions to promote treatment adherence could be designed with these factors in mind. For example, when known barriers to adherence are mapped against the currently available interventions to promote adherence, it is interesting to note that very few interventions are designed to build on social and family support mechanisms. Most are targeted at overcoming barriers to health care delivery to the individual [75]. Based on our third-order interpretation, we identified a number of hypotheses that may guide policy makers and practitioners in developing and implementing specific measures to improve adherence, including influencing the behaviour of practitioners, the organisation of services, and the behaviour of individuals (Box 9). This review shows the usefulness of qualitative synthesis in informing policies for health interventions. Through bringing together data from multiple primary studies, and looking for commonalities across these studies, the approach provides fresh insights into the reasons for poor adherence and guidance on where the development of more patient-centred interventions to improve adherence could be useful. Such insights can be useful to both programme managers at local and national levels and also in facilitating the development of more appropriate international policies for the management of TB. Box 9. Factors Likely to Improve TB Treatment Adherence Increase the visibility of TB programmes in the community, which may increase knowledge and improve attitudes towards TB Provide more information about the disease and treatment to patients and communities Increase support from family, peers, and social networks Minimize costs and unpleasantness related to clinic visits and increase flexibility and patient autonomy Increase flexibility in terms of patient choice of treatment plan and type of support Increase the patient centredness of interactions between providers and clients Address “structural” and “personal” factors, for example through micro-financing and other empowerment initiatives Provide more information about the effects of medication to reduce the risk of patients becoming nonadherent when experiencing treatment side effects Implications for Research Based on the findings of this synthesis we believe that further research is needed both to understand people's experience of TB and its treatment and to develop more patient-centred approaches to improving treatment adherence among people with TB. By “patient-centred approaches” we mean interventions that focus on sharing decisions about interventions or the management of health problems with patients and that view the patient as a whole person who has individual preferences situated within a wider social context [76]. Key issues to be explored in this research include how gender shapes experiences of treatment taking and how differing gender roles may influence adherence. This aspect was reported less frequently than expected in the primary studies in this review and would benefit from further exploration. Patient experiences of side effects of treatment, and how these influence decisions to stop taking treatment, also warrant further research since the existing literature reports vary as to the influence of side effects on treatment adherence [77,78]. There is also little published evidence on the experiences of patients living with HIV/AIDS and taking treatment for TB or receiving concurrent treatment for both diseases; our review included only three reports of qualitative research in this area [51,63,64]. The small number of studies is surprising, given the high rates of TB–HIV coinfection, especially in sub-Saharan Africa [79]; the complex treatment regimens involved; and the need for high rates of treatment adherence for both diseases. There is also some evidence that where coinfection is common, a diagnosis of TB may be seen as a diagnosis of HIV and this “form” of TB may be seen as incurable, with consequent impacts on patient adherence to treatment [80]. Managing treatment for both HIV and TB is therefore likely to present unique challenges to patients, providers, and the health care system, and further research on the particular experiences of patients taking antiretroviral and anti-TB treatment would be very helpful. The process of data extraction and quality assessment identified a number of lacunae in the included study reports. Studies frequently failed to report the details of how treatment was delivered, for example whether direct observation of treatment was used; the treatment regimens used; and the sociodemographics of the included study populations. Greater attention to these areas would improve understanding of research findings and facilitate assessment of their transferability to other contexts. The reporting of a number of study quality issues also needs to be addressed in future reports, including the theoretical orientation of the research and sampling and analysis approaches (see Table 1). Finally, lay conceptualisations of illness and wellness, particularly of TB and its treatment, are not well understood. The TB treatment literature is almost entirely conceptualised from a biomedical perspective, and even studies of patient experiences are largely conducted with the aim of improving treatment adherence. Understanding lay conceptualisations will help in comprehending why people may stop taking treatment at particular times. This would involve acknowledging that patients have agency and are active [71] in shaping their own treatment decisions rather than seeing poor adherence simply as “irresponsible” behaviour. Research approaching TB adherence from a nonbiomedical perspective is required to further understand the impact of traditional beliefs [81] and perceptions of illness and wellness on adherence to treatment. Any further work on patient experiences of TB adherence should also acknowledge and explore the social, economic, and geographical contexts in which a patient is located. There are suggestions that the growing interest in the subjective experiences of health care consumers may result in these experiences being used as simply another tool with which to better promote treatment adherence. In addition, this focus, and its attendant notions of shared responsibility for treatment between consumers and providers, could be seen as acting to expand the surveillance of treatment taking from health care workers to consumers and the wider community [82,83]. We therefore believe it is important that this kind of evidence is used carefully by decision makers and practitioners. The extent to which new interventions come from biomedical rather than lay perspectives should be recognised to ensure that structural factors, as well as individual patient responsibilities in treatment taking, are considered. Conclusion This synthesis indicates that patients often take their TB medication under difficult circumstances and experience significant challenges, many of which are outside of their direct control. Taking a lengthy course of medication is not straightforward and frequently involves difficult decisions, sometimes at substantial personal and social cost to the patient. Adherence is a complex, dynamic phenomenon; a wide range of interacting factors impact on treatment-taking behaviour, and patient behaviour may change during the course of treatment. More patient-centred interventions, and far greater attention to structural barriers, are needed to improve treatment adherence and reduce the global disease burden attributable to TB. Supporting Information Alternative Language Abstract S1 Translation of the abstract into Norwegian by Atle Fretheim (48 KB PDF) Click here for additional data file. Table S1 Search Results (35 KB DOC) Click here for additional data file.
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Where is the evidence? A systematic review of shared decision making and patient outcomes.
L. Shay, Jennifer Elston Lafata (2014)
Despite widespread advocacy for shared decision making (SDM), the empirical evidence regarding its effectiveness to improve patient outcomes has not been systematically reviewed. The purpose of this study was to systematically review the empirical evidence linking patient outcomes and SDM, when the decision-making process has been explicitly measured, and to identify under what measurement perspectives SDM is associated with which types of patient outcomes (affective-cognitive, behavioral, and health). PubMed (through December 2012) and hand search of article bibliographies. Studies were included if they empirically 1) measured SDM in the context of a patient-clinician interaction and 2) evaluated the relationship between SDM and at least 1 patient outcome. Study results were categorized by SDM measurement perspective (patient-reported, clinician-reported, or observer-rated) and outcome type (affective-cognitive, behavioral, or health). Thirty-nine studies met inclusion criteria. Thirty-three used patient-reported measures of SDM, 6 used observer-rated measures, and 2 used clinician-reported measures. Ninety-seven unique patient outcomes were assessed; 51% affective-cognitive, 28% behavioral, and 21% health. Only 43% of assessments (n = 42) found a significant and positive relationship between SDM and the patient outcome. This proportion varied by SDM measurement perspective and outcome category. It was found that 52% of outcomes assessed with patient-reported SDM were significant and positive, compared with 21% with observer-rated and 0% with clinician-reported SDM. Regardless of measurement perspective, SDM was most likely to be associated with affective-cognitive patient outcomes (54%), compared with 37% of behavioral and 25% of health outcomes. The relatively small number of studies precludes meta-analysis. Because the study inclusion and exclusion criteria required both an empirical measure of SDM and an assessment of the association between that measure and a patient outcome, most included studies were observational in design. SDM, when perceived by patients as occurring, tends to result in improved affective-cognitive outcomes. Evidence is lacking for the association between empirical measures of SDM and patient behavioral and health outcomes. © The Author(s) 2014.
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Why Do Women Not Use Antenatal Services in Low- and Middle-Income Countries? A Meta-Synthesis of Qualitative Studies
Kenneth Finlayson, Soo Downe (2013)
Introduction Recent estimates of global maternal mortality ratios (MMRs) suggest a substantial decline in recent years [1],[2]. However, current rates of decline will still fall well short of meeting Millennium Development Goal 5 (MDG 5): reducing maternal mortality by 75% by 2015 [3]. Data from the World Health Organization (WHO) indicate that in many low- and middle-income countries (LMICs), especially in sub-Saharan Africa, the rate of decline in MMR is less than 1% per year, and in some countries (e.g., South Africa, Nigeria, Mozambique, and Swaziland) rates even appear to be increasing [1],[4]. This slow rate of progress is starkly highlighted in the most recent “Countdown to 2015” report, which found that only nine of the 74 countries with the highest MMRs in the world were on target to achieve MDG 5 [5]. WHO reports and experts in the field consistently highlight the lack of access to local, adequately resourced health care facilities as an important reason for the relatively slow rate of progress towards achieving MDG 5 [6],[7]. Access includes ensuring comprehensive antenatal care coverage for all pregnant women. Recent estimates indicate that the number of women in LMICs attending at least one antenatal appointment increased from 64% in 1990 to 81% in 2009, and those attending four or more times rose from 35% to 51% over the same period [2]. However, major disparities exist within and between continents, between countries, and between urban and rural populations [8]. As with the MMR figures, the rate of progress is slowest in sub-Saharan Africa, where antenatal coverage rates have improved slightly during the last two decades, but the number of women visiting four or more times has remained static, at about 44% [2]. Although the correlation between “inadequate” antenatal care and high maternal mortality is complicated and contentious, it is widely accepted that antenatal care presents opportunities to identify pregnancy risks and, in a broader sense, to monitor and support the general health care of women who may be susceptible to a range of potentially fatal pathologies including HIV, anaemia, malnutrition, tuberculosis, and malaria [5]–[9]. Global implementation of strategies designed to encourage antenatal attendance tend to be based on the assumption that if high-quality services are provided, people will come to them. However, data from quantitative population-level studies suggest that this is not necessarily the case for some groups of pregnant women. Well-documented socio-demographic data indicate that women from relatively poor backgrounds, living in rural areas, and/or with low levels of education are less likely to access antenatal services, even if they are provided [10]–[12]. Other factors, including having a husband with a low level of education, living a long distance from a clinic, and having high parity, have also been identified as barriers [13]–[17]. Similar factors emerge in reviews of barriers to antenatal care in developed countries [18]–[21], which suggests that the issues for women who remain marginalised at local, national, and global levels are much the same. Based on the results of a WHO antenatal care randomised trial [22], the standard measure of adequate antenatal care delivery is a minimum of four antenatal visits (with the first occurring during the first trimester) for a woman and her foetus, if they are judged to be healthy following a standard risk assessment [23]. Although some authorities, e.g., the US Agency for International Development, have noted the need for woman-centred, individualised, culturally specific programmes [24], the recent BMJ Best Practice guidance on routine antenatal care provision lists a wide range of routine screening, testing, and health education topics, with little emphasis on individual concerns and circumstances [25]. Evidence equating risk-focused, low-frequency antenatal care with clinical outcomes in LMICs is limited, but a recent Cochrane review found that population groups in LMICs receiving fewer antenatal visits (4–6) had an increased risk of perinatal mortality and, in particular, stillbirth [26]. The author of a WHO commentary on this review hypothesizes that the excess perinatal loss for women in LMIC settings may be due to inadequate local tailoring of risk assessment, low numbers of staff, and inadequate training [27]. The WHO manual on antenatal care [23] does not specify how antenatal care should be funded, the nature and relevance of staff attitude and training, or what resources should be available at which level of care provision. However, tacit assumptions are likely to include that staff are available and have high levels of communication and interpersonal skills, and that the programme is affordable, otherwise it would be unlikely to function. Despite the findings of the review, and speculation about the components and the effectiveness of the WHO programme, it remains the standard for adequate antenatal care provision. Given the potential significance of context in mediating whether women access antenatal care, qualitative studies may provide fresh insights into pertinent issues in specific settings. In terms of LMICs, such studies suggest that some women do not attend antenatal facilities because of deeply held cultural beliefs and/or tribal traditions surrounding the nature of pregnancy and childbirth [28],[29]. Qualitative studies can also illuminate the effect of local policies and incentives, such as the use of antenatal clinic cards to guarantee intra-partum hospital access—a controversial practice in a number of African countries because of the potential for discrimination against women who don't have any record of antenatal clinic attendance [30]. However, because of the highly contextualised nature of individual qualitative studies, policy makers often overlook them, and their findings remain outside of global, national, and local health care strategies [31]. Systematic review and synthesis of qualitative studies can generate hypotheses about how successful programmes work, and why unsuccessful programmes fail certain individuals and groups [32]. To address the latter question with regards to inadequate accessing of antenatal care, we planned to locate, analyse, and synthesise qualitative studies exploring the views, beliefs, and experiences of women from LMICs who did not access antenatal care at all, or accessed it inadequately, according to the WHO definition given above. The intention was to develop hypotheses about lack of attendance that could inform policy development, based on a new understanding of why some women still don't access antenatal care, even when it is made available. Qualitative Meta-Synthesis Methodology The emphasis in meta-synthesis is on rigorous study selection and the careful interpretation of data across studies, contexts, and populations. This combination and interpretation of findings from a number of systematically selected studies in a particular subject area shares methodological similarities with its quantitative equivalent, meta-analysis. When meta-synthesis is used to explain or interpret existing knowledge, e.g., alongside meta-analysis, it can be aggregative and deductive [32]. However, when it is exploring fields where there is little prior information, it is undertaken as an inductive method, designed to generate theoretical insights and hypotheses that can be tested in future research [32]. In the latter case, the classic approach is meta-ethnography [33]. As with qualitative research, the direct findings of meta-synthesis are not usually generalisable, but the theoretical insights or hypotheses arising from the synthesis of the included studies should be transferable to other similar settings and contexts [34]–[36]. In meta-synthesis, as in grounded theory, the comprehensiveness of the analysis is determined by the concept of theoretical saturation. Theoretical saturation is reached when new studies do not change the emerging theory or hypothesis, and when a systematic search for disconfirming cases in all the included studies reinforces the theoretical insights. Given the scope and rigour of meta-synthesis reviews, there is greater potential for them to inform practice, influence policy, and underpin strategy than for individual qualitative studies [37],[38]. Methods Search Strategy and Selection Criteria The search strategy was designed to locate qualitative studies exploring the antenatal care experiences, attitudes, and/or beliefs of women from LMICs who had chosen to access antenatal care late (after 12 wk gestation), infrequently (less than four times), or not at all [7]. We searched for any studies that might include qualitative data, including survey-based studies with open-ended written responses, mixed methods studies, focus groups, and one-to-one interviews. No language restriction was imposed. All electronic searches used keywords covering the main search domains including “antenatal”, “prenatal”, “maternity”, “pregnancy”, “care”, “service”, “provision”, “access”, and “attendance”. The searches were conducted across a range of medical, sociological, and psychological databases (MEDLINE, Embase, PubMed, AMED [Allied and Complementary Medicine Database], BNI [British Nursing Index], CINAHL [Cumulative Index to Nursing and Allied Health Literature], PsycINFO, Wilson Social Science Abstracts), as well as continent-specific databases such as Latindex (Literatura Latino-Americana e do Caribe em Ciências da Saúde) for South American publications and AJOL (African Journals Online) for articles published in Africa. Where possible, we sought to narrow the search to LMICs by incorporating the World Bank's list of low- and middle-income economies in the search terms [39]. Some specific papers were recommended by colleagues, and we hand-searched relevant journals in the departmental and university libraries. Other articles were obtained from reference lists published in identified studies. The initial search included papers published between 1 January 1980 and 31 March 2011. An updated search was completed on 14–15 February 2012, after which the contents pages of relevant journals were reviewed (via Zetoc) as they were published. These updated searches have provided a means to check that the thematic structure and synthesis developed in the primary analysis continue to hold true as new studies are published (“theoretical saturation”). Both authors reviewed all of the included papers independently, and then reached a final agreement on inclusion by consensus. All of the papers meeting our eligibility criteria were assessed for quality using an appropriate published tool [40]. This tool incorporates a pragmatic grading system [41] and uses an A–D scoring system. The authors determined grades by consensus, and studies scoring C+ or higher were included in the final review (see Table S1). Analysis and Synthesis Our intention was to generate new theoretical insights that could form the basis for hypothesis testing in the future, so we used the meta-ethnographic approach developed by Noblit and Hare [33]. This approach has been used successfully in meta-synthesis studies related to several different health care settings [19],[35],[42]–[44]. It is not restricted to ethnographic studies, as the approach can incorporate the full range of qualitative methods. We began by identifying the findings from one paper and comparing them with the findings from another, to generate a “long list” of emerging concepts. These early concepts were then examined to identify similarities, in a process that is termed “reciprocal translation”. During this process, some concepts were collapsed together to create a parsimonious thematic structure. Each author then reviewed the themes independently to ensure there were no data that were at odds with our analysis and that no data remained unexplained. This stage of the process is analogous to searching for discomfirming data and is termed “refutational translation” in meta-ethnographic studies [33]. The themes were then synthesised into a “line of argument” synthesis—a phrase or statement that summarises the main findings of the study and the theoretical insights that they generate. This synthesis was then used to create a hypothetical model to explain why women fail to make adequate use of antenatal services in LMICs. Reflexive Accounting In qualitative research, the researcher is the instrument of measurement, and the final analysis is a product of the interaction between the researcher and the data. Reflexive accounting allows the reader of the final research product to assess the degree to which the prior views and experiences of the researchers may have influenced design, data collection, and data interpretation in any specific study. In this case, S. D. believed that interpersonal relationships were likely to be critical in mediating antenatal care use, and K. F. believed that whether women accessed care was most likely to be influenced by personal and/or localised socio-economic circumstances. To minimise the effect of these beliefs, both authors were particularly rigorous in looking for refutational data in these specific areas as the analysis progressed. Results Our search to 31 March 2011 generated a total of 3,622 hits, including 625 duplicates, which were removed at this stage. Of the remaining 2,997 articles, 2,892 were excluded by title and abstract because they failed to address the initial selection criteria. Most of the studies removed at this stage were excluded for one of three reasons: (1) they were conducted in high-income countries, (2) they were obviously quantitative, or (3) they were not about access to antenatal care. Of the remaining 105 papers, a further 75 were removed after independent full text review by the authors, largely because they lacked sufficient qualitative data (n = 36), were based on the experiences of women who attended antenatal services regularly rather those who didn't (n = 25), reflected the views of service providers rather than the women attending care (n = 8), or were concerned with access to health care generally as opposed to antenatal care specifically (n = 6). This left 30 papers that were taken forward for quality assessment. Following independent review, the authors agreed that nine studies failed to meet the quality requirements, leaving 21 that were taken forward for analysis and synthesis (see Figure 1 for details of the selection process). Of the nine studies excluded, three were mixed methods studies with very limited qualitative data, two reported on the views of health care providers with little emphasis on the responses of service users, two presented qualitative information in a quantitative format (frequency of responses), and two failed to meet the quality criteria for design, methodology, and/or analysis. Only one study meeting the inclusion and quality criteria was identified by the updated searches since 31 March 2011 [45], and this was used to check the explanatory power of the final thematic structure, synthesis, and interpretation. 10.1371/journal.pmed.1001373.g001 Figure 1 Flow chart summarising search strategy. Description of the Studies The 21 papers in the final full synthesis represent the views of women from 15 countries (Bangladesh [×2], Benin, Cambodia, Gambia, India, Indonesia, Kenya, Lebanon, Mexico, Mozambique, Nepal, Pakistan, South Africa [×4], Tanzania [×2], and Uganda [×2]) and include data from more than 1,239 participants (minimum 10, maximum 240) who were either interviewed directly or gave their opinion as part of a focus group (see Table S1 for full details of the included studies). Two of the studies utilised a mixed methods approach, and although these studies contained limited qualitative information, the narrative data were pertinent and reasonably well reported. Ten of the 21 studies were conducted in a rural setting, three took place in an exclusively urban environment, and the remaining eight involved both urban and rural settings. The earliest paper was published in 1992 and the most recent in 2011, with the majority (n = 17) being published within the last ten years. More than half of the included papers (n = 12) were published within the last three years, which suggests an upswing in interest in this area of research (see Table 1 for a summary of included papers). 10.1371/journal.pmed.1001373.t001 Table 1 Summary of included studies. Authors [Reference] Year of Publication Country Location—Type of Region Number of Participants Method Used Quality Grading Abrahams et al. [46] 2001 South Africa Cape Town—semi-urban 32 Interviews C+ Myer and Harrison [47] 2003 South Africa Hlabisa district—rural 29 Interviews B Pretorius and Greeff [48] 2004 South Africa Mafikeng-Mmbatho districts—rural 18 Interviews C+ Mrisho et al. [49] 2009 Tanzania Lindi and Tandahimba districts—rural 58 Focus groups B Matsuoka et al. [50] 2010 Cambodia Kampong and Cham provinces—rural 66 Interviews and focus groups B Choudhury and Ahmed [51] 2011 Bangladesh Rangpur and Kurigram districts—rural 20 Interviews C+ Chapman [52] 2003 Mozambique Vila-Gondola—semi-urban 83 Interviews A Grossmann-Kendall et al. [53] 2001 Benin Cotonou and Ouidah districts—urban and rural 19 Interviews C+ Ndyomugyenyi et al. [54] 1998 Uganda Kigorobya sub-country—rural 80–120a Focus groups C+ Gcaba and Brookes [55] 1992 South Africa Durban—urban 10 Interviews B Atuyambe et al. [56] 2009 Uganda Wakiso district—rural 92 Focus groups B Stokes et al. [57] 2008 Gambia Kiang West district—rural 83 Interviews and focus groups C+ Griffiths and Stephenson [58] 2001 India Pune and Mumbai—mix of urban and rural at each location 45 Interviews B Simkhada et al. [59] 2010 Nepal Kathmandu area—semi-urban and rural 30 Interviews B Titaley et al. [60] 2010 Indonesia Garut, Sukabumi, and Ciamis districts, West Java—semi-urban and rural 119 Interviews and focus groups B Family Care International [61] 2003 Kenya Homabay and Migori districts—mix of urban and rural in each 27–47a Interviews and focus groups B Tinoco-Ojanguren et al. [62] 2008 Mexico Chiapas—mix of urban and rural 16 Interviews C+ Mumtaz and Salway [63] 2007 Pakistan Punjab—rural 39–55a Interviews and focus groups B Chowdhury et al. [64] 2003 Bangladesh Dhaka and Upazila—urban and rural 16 Interviews B Mubyazi et al. [65] 2010 Tanzania Mkuranaga and Mufinidi districts—both rural 240 Interviews and focus groups B+ Kabakian-Khasholian et al. [66] 2000 Lebanon Bekaa, Akkar, and Beirut—rural, semi-rural, and urban 117 Interviews C+ a A range is given for these studies, as the authors list the number of focus groups conducted, with a minimum and maximum number of participants; e.g., ten focus groups with 8–12 participants. Description of the Themes The emerging concepts and themes are summarised in Table 2. We identified a total of seven emerging themes and three final themes (summarised below), two of which relate specifically to initial attendance at antenatal facilities, and a further, service-oriented, theme relating to maintaining attendance. 10.1371/journal.pmed.1001373.t002 Table 2 Summary of themes. Initial Concepts (Findings from Primary Papers) Relevant Papers (References) Emerging Themes Final Themes Awareness of signs/symptoms of pregnancy 46–51 Pregnancy awareness and disclosure—awareness of signs and symptoms of pregnancy; cultural reasons for keeping pregnancy secret Pregnancy as socially contingent and physiologically healthy—pregnancy as a normal life event—only attend antenatal care when sick; lack of awareness of pregnancy indicators; lack of understanding of antenatal care benefits; embarrassment; cultural and supernatural implications of pregnancy disclosure; preference for traditional healers and medicines (including cost savings) Cultural reasons for keeping pregnancy secret 46,48,49,52–57 Don't recognise/understand Western approaches to health care 46,47,54,56,58,60 Resistance to risk-averse care models—don't recognise/understand Western approaches to health care; lack of perceived benefits; pregnancy as a normal life event; reliance on traditional/alternative antenatal practices; influence of family members Lack of perceived benefits of attendance 46–48,51,56,58,59,62–64 Pregnancy as a normal life event 46,50–54,56,58–61,66 Reliance on traditional/alternative antenatal practices 50,52,54,58,60–62 Influence of family members 50,51,62–64 Costs (direct and indirect) 46,49,50–56,58–66 Prioritising limited resources for basic survival—costs (direct and indirect); laziness Resource use and survival in conditions of extreme poverty—costs (direct and indirect), transport, and distance; time off work and child care—may be made to wait several hours; inadequate infrastructure (especially in rural areas); potential for accident/attack en route Laziness 46,47,49,62 Lack of transport and distance to clinic 46,48,50,54–56,58,60,65 Difficult and dangerous travel —lack of transport and distance to clinic; inadequate infrastructure Inadequate infrastructure 48,49,55,58,60–62,64 Lack of staff/medicine/care at clinic 49,50,54,56,58,65 Attending clinics is not worth the effort—lack of staff/medicine/care at clinic; waiting times at clinic Not getting it right the first time—poor staff attitude; inflexibility of antenatal care services; issuing of cards for delivery at a hospital (women don't return) and staff giving card holders preferential treatment; few, poorly trained staff; lack of facilities; lack of medicines Waiting times at clinic 46,48–50,52, Attendance only to get a card (for hospital delivery) 46,47,50,52,61 Locally determined rules of access—attendance only to get a card; inflexible booking systems Inflexible booking systems 46,63 Poor staff attitude 46,48–51,53,55–57,62,65,66 Insensitivity, disrespect, and abuse —poor staff attitude; embarrassment Embarrassment (about examination or inability to pay) 46,49,56,65, Theme One: Pregnancy as Socially Contingent and Physiologically Healthy This theme incorporates two concepts (highlighted below) that emphasise some of the cultural and contextual nuances associated with pregnancy. Many women in these studies described pregnancy as a healthy physical state and saw little reason to visit health professionals when there was no perceived threat to their well-being. In some cultures this reluctance to engage with antenatal services was further compounded by a belief that pregnancy disclosure could lead to unwanted religious or spiritual complications. Pregnancy awareness and disclosure: “It's better to wait, to see if you really are pregnant” For many respondents, traditional or cultural beliefs dictated that they should wait until they had missed several periods before confirming a pregnancy [46]–[51]. Sometimes it's difficult to tell that you are pregnant. Some people have irregular periods, they miss periods for months only to find they are not pregnant, so it is better to wait, to see if you are really pregnant. [Pregnant woman, rural South Africa] [47] This belief limited early accessing of care. Even when women suspected they were pregnant, the motivation to visit an antenatal clinic was often superseded by cultural and superstitious beliefs about pregnancy disclosure [52]–[63]. In rural Pakistan, the shame (sharam) associated with pregnancy, because of the obvious relationship with sexual activity, meant women were less willing to be seen in public places [63]. The shame of being pregnant and the subsequent reluctance to be seen in public was also a factor for pregnant teenagers in Uganda [56]. In other parts of Africa and South East Asia, the potential to be “cursed” by evil spirits or jealous or vindictive contemporaries had a detrimental effect on pregnancy disclosure [52],[53],[55],[64]. One South African woman who had recently experienced a neonatal death explained her loss in the following manner: I think my boyfriend's previous girlfriends were jealous of my pregnancy and they bewitched me. [55] These kinds of beliefs appeared to be relatively common in rural communities and discouraged women from visiting public places, especially antenatal clinics, where a visit would be perceived as a public declaration of pregnancy. Resistance to risk-averse care models: “What is the point in going for a check-up in a healthy condition?” In many of the studies, women reported that they didn't feel the need to seek professional care when there was nothing wrong with their pregnancy [46]–[49],[52]–[54],[58],[63],[64]. As no-one expects to be sick during pregnancy, visiting the centre for a check-up is not necessary. What is the point in going for a check-up in a healthy condition? [Non-user of antenatal care services, rural Bangladesh] [64] Pregnancy was viewed as a normal life event rather than a medical condition requiring professional monitoring and supervision. This was especially true for multiparous women who had experienced one or more healthy pregnancies [50],[54],[58]. If a woman has always delivered well, she does not see the need for antenatal care attendance or visiting the health unit to deliver. [Pregnant woman, rural Uganda] [54] In some hierarchical cultures the decision to engage with antenatal services was made by tribal elders, husbands, mothers-in-law, or senior family members rather than the women themselves [50],[56],[59],[62]–[64]. Findings from a Nepalese study highlight the central role played by the mother-in-law when it came to making decisions about whether to go for antenatal care. My mother-in-law doesn't help. It might be due to her past experiences. She used to do all the work by herself during her time of pregnancy, so she wants me to do the same. I have lots of work here at home so I don't go for [antenatal care] check-ups. [Non-user of antenatal care services, rural Nepal] [59] Theme Two: Resource Use and Survival in Conditions of Extreme Poverty All of the studies were conducted in populations affected by poverty, and our findings suggest that, in such circumstances, limited personal resources were often directed towards immediate survival needs rather than specific pregnancy-related concerns. Even when antenatal care was offered free of charge, the cost of transport (sometimes across difficult or dangerous terrain), the loss of women's labour to the family, and the possibility of having to pay for additional medicines rendered attendance impossible. Using resources for health care or basic survival: “If there is no money, we can't go” In virtually all of the identified studies [46],[49],[50]–[56],[58]–[66], the costs (both direct and indirect) of visiting antenatal facilities were viewed as a significant factor in restricting or inhibiting access to antenatal care: It is good to go to the doctor during pregnancy, but if there is no money we can't go. I wanted to go but I didn't have the money to pay. [Limited user of antenatal care services, Mumbai, India] [58] Even in countries offering free access to antenatal care, the unanticipated costs of paying for drugs, tests, and medical cards placed an additional strain on limited family finances. The reason I did not go back there [to the antenatal clinic] is because my husband only buys what he wants when he is given the prescription. For example, when there are three things prescribed he buys only two. So, why should I take the trouble to go there for nothing? If I go to the clinic every month, he will just ask how much I think he earns to be able to buy so many medications for me. [Limited user of antenatal care services, Benin] [53] The indirect costs of getting to and from antenatal facilities were highlighted consistently in the included studies, especially those conducted in rural areas [46],[48],[50],[54]–[56],[58],[60]. The prohibitive costs of taxi and bus fares prevented some women from visiting antenatal clinics, and, in cases of extreme poverty, even the most basic forms of transport came at an unaffordable price. When I was pregnant what prevented me from seeking healthcare was lack of transport money because my legs were a problem. I used to live far away in the hills and I could not ask anyone to take me on a bicycle because I would be asked for money. [Adolescent limited user of antenatal care services, rural Uganda] [56] Some of the respondents' accounts indicated that the need for women to contribute to relatively meagre household resources was more than simply a useful contribution. It was perceived to be crucial for survival, especially at significant times in the farming cycle: When I had a third pregnancy, it was harvest season. So I wanted to help my husband, even during the pregnancy. [Non-user of antenatal care services, rural Cambodia] [50] Difficult and dangerous travel: “It is so far and the road condition is too bad” Many of the studies included in this synthesis were conducted in predominantly rural areas with relatively basic transport networks. For pregnant women living in towns and villages without community health care facilities, the need to journey to distant locations to receive antenatal care presented travelling difficulties, which they were unwilling or unable to overcome [46],[47],[50],[52],[58],[60],[62]. I never visited the health centre to check my pregnancy because it is so far and the road condition is too bad. [Non-user of antenatal care services, rural Cambodia] [50] Even in situations where women were prepared to make lengthy journeys on foot, sometimes walking for three to four hours, the associated risks and challenges occasionally prevented them from doing so. In parts of Africa, the prospect of being attacked by wild animals or aggressive men deterred women from making these journeys, whilst in South East Asia, the deterioration of the roads during the rainy season had a similar detrimental effect. This suggests that the barriers were not just nonexistent or expensive transportation, or inadequate roads, but also the fear of physical harm, which outweighed any benefits that might be gained from antenatal care: It is really hard when it is raining. We are afraid we will fall over because the road is so slippery and we are pregnant. The health centre is far and you can see that the road is poor. [Limited user of antenatal care services, West Java, Indonesia] [60] Theme Three: Not Getting It Right the First Time Given the very real and critical issues of how women perceive pregnancy, and of the economic and physical sacrifice needed from the woman and her family to get her to a central antenatal clinic, it is crucial that the services she receives when she gets there are “fit for purpose”, and that the benefits are perceived to outweigh potential harms. Unfortunately, for many of the women included in this review, this was not the case. Attending clinics is not worth the effort: “It's better to go to the TBA [traditional birth attendant]” The relatively poor economic circumstances of the countries included in this study meant that clinics were often severely under-resourced. Pregnant women who initially recognised the benefits of antenatal care and who made the often significant financial and personal sacrifices to visit health care facilities were often disappointed by the lack of resources they found when they finally got there. As a consequence, they made the decision not to return [48]–[50],[54],[56],[58],[65]. I don't visit the health centre for antenatal care because the health centre doesn't have enough medical equipment. When we have a problem, all they will probably do is refer us to the referral hospital…. [Non-user of antenatal care services, rural Cambodia] [50] The amount of time women had to wait to be seen by health professionals, especially after long and difficult journeys, was a common cause of complaint and discouraged some of them from attending again [46],[48],[49],[52],[54],[65]. Pregnant women also complained about the cursory nature of consultations in understaffed clinics and made the decision to revert to more traditional forms of antenatal care. They just touch your abdomen, it's better to go to the TBA [traditional birth attendant] because the TBA examines the mother and tells her how the baby is lying in her stomach. [Pregnant woman, rural Uganda] [54] Locally determined rules of access: “If you do not have a card, they will not accept you” Our findings suggest that in a number of cases, particularly in sub-Saharan Africa, the practice of giving antenatal cards to women attending the clinic is being poorly managed and is having a detrimental effect on continued access. Some health care providers use the clinic card as “a passport” and refuse to admit labouring women to a clinic or hospital if they do not have one [46],[49],[52],[53],[65]. This kind of negative reinforcement has created a situation in which pregnant women visit an antenatal facility only once—to get a “clinic card”. I am just afraid of being denied services when I need them, so one must just go [to antenatal care] to get the [clinic] card. If you do not have a card, they will not accept you when there is a problem…otherwise we could just rest at home. [Woman in ninth month of pregnancy, rural Tanzania] [65] Disrespect and abuse: “They don't care for patients” One of the most common reasons given for delaying or restricting antenatal visits was the poor attitude of staff at health care facilities [46],[48],[50],[51],[53],[56],[62],[63],[65],[66]. Findings from countries in Africa, Asia, and South America highlight insensitivity, rudeness, humiliation, neglect, abuse, and even physical violence by health centre staff as key factors in limiting women's accessing of antenatal care. Sometimes the poor attitude of health care providers was described by what they failed to do, as recounted by a young woman in Uganda: They [health care workers at an antenatal clinic] don't care for patients, for example when you go in the morning they will ask you “at your home don't you sleep”. When you go at lunch time they will ask you whether at your place you don't take lunch. And when you go in the evening they will tell you they have closed up. [56] Authors also reported that women felt intimidated because of the potential for abuse: When you see the health agent yelling at women who are not feeling well, you are afraid of telling them what is wrong with you too…. [Pregnant woman, Benin] [53] In other contexts, women recounted being punished or humiliated because of some perceived minor misdemeanour: If you arrive late at the clinic, the staff rebukes and punishes you with a fine or they order you to clean the floor or sweep the surroundings. [Limited user of antenatal care services, rural Tanzania] [65] In all of these examples, women reported feeling reluctant to return for another appointment, and some reverted to more traditional forms of antenatal care as a consequence. Line-of-Argument Synthesis Antenatal care provision that is based on a concept of pregnancy as a potentially risky biomedical state, and that, as a consequence, provides mechanisms focused mainly on surveillance in more or less centralised locations, is contextually at odds with the theories, beliefs, and socio-economic situations of pregnant women and their families in a range of LMICs. This situation is compounded when accessing services presents additional risks to women and their families, in terms of lost labour or income, or physical danger; when the promised care is not delivered because of resource constraints; and when women experience covert or overt abuse in care settings. Hypothesis Based on the Findings Following the claim by Pawson [67] that “programmes are theory incarnate”, our data can illuminate the potential inconsistencies between theories underpinning antenatal care programmes based on the WHO antenatal care model [23] and the themes that underpin the beliefs, actions, and experiences (the local context) of those to whom these programmes are targeted (see Figure 2). We hypothesize that the dissonance between these two frames of reference might explain the lack of initial attendance at antenatal clinics, as described in the first row of Figure 2. The second row of the figure illustrates a second misalignment, this time between the principles assumed to underpin antenatal care provision, and the experiences of women who use them. We hypothesize that this misalignment may explain the lack of return visits for antenatal care after the first encounter. 10.1371/journal.pmed.1001373.g002 Figure 2 Hypothetical model of inadequate access to antenatal care in low and middle income countries. Testing for Theoretical Saturation The data from the one paper [45] we identified after the end of our formal search phase in March 2011 can be incorporated into our explanatory model, suggesting theoretical saturation. We would argue that future studies should therefore focus on testing our hypothesis, and designing specific solutions to the problem of inadequate attendance building on this summary of all the relevant qualitative data to date. This approach would avoid the problem of “analytic interruptus” described by Statham in relation to the continual reproduction of single-site qualitative studies with no attempt to translate the emerging theoretical insights into action [68]. Discussion Some of the issues identified by this meta-synthesis are common to other areas of maternity care and health care in general. At the family level, these include lack of household resources, especially when faced with the problem of formal and informal payment or services [69],[70], and the problems inherent in travel to centralised health care services [46],[51]–[54],[71]. Restricted autonomy for women has been identified as a factor underpinning inability to make personal decisions about health service use [72], and this factor is one of the underlying elements of the “three delays” hypothesis relating to lack of accessing of emergency care in labour [73]. There is also an increasing recognition of the problem of human rights abuses in health care in general [74]–[76]. From a theoretical perspective our findings suggest the hypothesis that, in certain contexts, there may be a misalignment between the theories that underpin the provision of antenatal care and the beliefs and socio-economic contexts of women who access services irregularly or not at all. The dissonance between these two frames of reference might explain the lack of initial access to antenatal care. A second disparity, this time between the nature of antenatal provision and the expectations of the women who use the services, may explain the lack of continued engagement. We are not aware of previous studies that have integrated these factors into an analysis of antenatal care use based on women's views and experiences, or that have identified pregnancy as a socially risky but physically healthy state. Minimising social stigma and risk requires care provision that is discrete and certainly not provided in public places subject to long queues for services. Strategies incorporating culturally appropriate understandings of maternity care tailored to individual communities are rare, but participatory programmes where local women and community leaders are actively engaged in the planning of local antenatal services have been shown to be effective in increasing antenatal coverage and reducing maternal and infant mortality [77]. This approach is well illustrated by a recent Cambodian study, which showed a 22% increase in antenatal attendance when service users and influential stakeholders became involved in the planning of community maternity services [78]. From a socio-economic perspective our findings suggest that, even in situations where women recognise the benefits of antenatal care and are willing, in principle, to attend, the physical barriers and even physical risks of getting to and from the clinic, coupled with the potential loss of crucial family resources, can be prohibitive. Even if services are free (with no covert point-of-care costs) and safe transport systems are provided, taking women from essential farming duties on long trips to and from central clinics might, at the extreme, still present a risk to family food supplies. In this case, the benefits of antenatal care must weigh strongly in the balance for service users before uptake will increase. Also, even where women do have a degree of personal autonomy, those who see pregnancy as a healthy state, but as socially risky, are still unlikely to value and attend programmes that expose their pregnant state, and that are largely focused on identifying and averting risk. This is especially pertinent when both the direct and opportunity costs are high, travel to central locations is difficult and dangerous, and the services they receive are of poor quality and overtly or covertly abusive. Projects designed to incentivise pregnant women to attend antenatal care have been implemented successfully in some LMICs. The Janani Suraksha Yojana cash transfer programme in India, where women are paid a small amount to attend antenatal care and give birth in a recognised health care facility, has had a significant effect on antenatal attendance and subsequent levels of neonatal and perinatal mortality [79]. An alternative, transport-based project in eastern Uganda, where local motorcycle riders were contracted to take women to and from antenatal clinics throughout their pregnancy, also showed a significant increase in antenatal attendance [80]. However, doubts remain about the practicality and sustainability of these kinds of initiatives, and, as our findings illustrate, many pregnant women remain unconvinced by the focus and quality of antenatal programmes, and seem unlikely to make full use of antenatal facilities unless care quality is improved. Given that data were not available from every region of every LMIC, it is possible that our line-of-argument synthesis, and our model, do not apply to all contexts in which antenatal care is underused. However, the comprehensiveness of our analysis is reinforced by evidence of theoretical saturation, both from our refutational analysis, and from the paper [45] published after the end of our formal search phase in March 2011. Our hypothetical model can explain the findings of this study, including the influence of cultural beliefs and lack of respect from health care professionals. In addition, the findings of the meta-synthesis are similar to those of a parallel review of women's accounts of non-accessing or limited accessing of antenatal care in resource-rich countries [19]. Given the range of countries that were represented in the meta-synthesis, and the date range of the publications (over nearly two decades), the issues seem to be universal and persistent. We hope that our synthesis illustrates the need to move from small repeated studies of the same problem in local contexts towards a more comprehensive understanding of the potential dissonance between context and service delivery mechanism across all of these settings. A more thorough evaluation using the realist review approach could test this hypothesis, and contribute towards a more detailed understanding of this issue [81]. This could provide the basis for a new approach to the design and delivery of antenatal care, founded on a careful analysis of distinctive local beliefs, values, and resource availability. Such an approach could identify a way of moving services away from broad population-based solutions, towards new service designs based on what works, for whom, in what circumstances [81]. Conclusion Despite moderate success in reducing MMRs and increasing antenatal care coverage, the global targets associated with MDG 5 seem unlikely to be attained by 2015, especially in many LMICs. So far, practical initiatives to address these issues have tended to adopt centralised, public provision of antenatal care based on utilitarian strategies designed to minimise clinical risk. This approach benefits some women and infants, but it marginalises others, as the programme design does not take into account necessary survival decisions, beliefs, attitudes, or cultural theories that may be intrinsic to the local context. Measures designed to sustain and maintain access in LMICs are likely to be more effective when policy makers and service providers align their programmes with the theoretical and philosophical constructs and the severe practical constraints that underpin the local community context. Such programmes must ensure that, once they access services, all pregnant women are treated with dignity, respect, and compassion. If programme delivery is not aligned with local contexts in this way, the findings from this meta-synthesis suggest, even the best and most physically accessible services may remain underused by some local pregnant women. Supporting Information Table S1 Assessment of quality of included studies. (RTF) Click here for additional data file.
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Publisher ID: bmjopen-2015-010035DOI: 10.1136/bmjopen-2015-010035
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2015
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December
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