Health system and societal barriers for gestational diabetes mellitus (GDM) services - lessons from World Diabetes Foundation supported GDM projects

Although maternal mortality and morbidity have received increased attention in the last two decades it still remains a huge public health challenge in many countries. According to the World Health Organization (WHO), approximately 1000 women die from preventable causes related to pregnancy and childbirth every day with 99% of these deaths occurring in low-and middle-income countries (LMIC) [1]. Haemorrhage, hypertensive disorders, obstructed labour and infection/sepsis are among the leading global causes of maternal mortality [2]. Gestational diabetes mellitus (GDM) directly or indirectly increases the risk of all the above conditions but is rarely mentioned among the causes of maternal mortality and morbidity. Hyperglycaemia may affect <1-19% of pregnancies in LMIC [3‐14] and is one of the most common medical conditions affecting pregnancy. Hyperglycaemia during pregnancy, (GDM and pre-gestational diabetes) increases the risk of maternal- and peri-natal mortality, obstructed labour, spontaneous abortion, still birth and macrosomia [15]. In countries where appropriate care for obstetrical emergencies is lacking, GDM may have particularly severe consequences for the health and well-being of the mother and child. GDM therefore represents an underestimated and unrecognised impediment to optimal maternal and neonatal health in LMIC.

Studies have shown that it is possible to reduce the risk of adverse pregnancy outcomes for women with GDM if proper management is initiated and tight glycemic control obtained [16, 17]. Cost benefit of screening women for GDM particularly with the recent introduction of the International Association of Diabetes and Pregnancy Study Groups (IADPSG) guideline with the likelihood of more women being identified and requiring care is being hotly debated; these calculations are dependent on the intervention, the underlying prevalence, opportunity cost, local costing etc. Models that take into account not only the immediate pregnancy outcomes but the potential for future prevention of type 2 diabetes in the mother and offspring show cost saving or a very favourable cost effectiveness ratio [18]. Addressing GDM through early detection and proper management therefore constitutes an opportunity to improve maternal health. In the absence of an international consensus, multiple different guidelines on screening and diagnosis of GDM have existed for a long time. This may be changing with the publication of the IADPSG recommendations. While an international consensus on screening and diagnosis for GDM is welcome, it fails to take into account feasibility and applicability in low resource settings to ensure wider usage. The barriers and challenges to screening and diagnosis and the applicability of various tests have been described by us in a recent paper [19]. It is recommended that women with GDM be screened for diabetes earliest around six weeks postpartum [20‐22]. After delivery most women with GDM return to normal glucose regulation, but continue to have a high risk of future diabetes, and some will be found to have overt diabetes, impaired fasting glucose or impaired glucose tolerance. To be able to identify these women and provide them all with appropriate treatment or preventive care is another opportunity and challenge. To be able to plan appropriate strategies to address these issues will require better understanding of the barriers currently hindering detection and treatment of GDM. This paper seeks to investigate societal and health system barriers hindering such efforts based on experiences gained from GDM projects supported by the World Diabetes Foundation (WDF).

From 2002 to 2010 WDF granted support to 253 projects. In order for a project to be included in this study it had to address GDM and begun implementation of activities before March 2011. Eleven projects from eight different LMIC qualified and were included in the study. Questionnaires were sent to the project partners and the partners were asked to participate in an interview. As one project partner was implementing two of the included projects a total of 10 partners participated. All 10 responded to the questionnaire and interviews were conducted face-to-face with three partners, over the phone with six partners and via email with one partner. Participation in the study was voluntary and before the interview the purpose of it was explained to the respondents and consent to participate in the interview obtained. Permission to audio record the interview was also requested from and given by the nine project partners that were interviewed face-to-face or via telephone. Upon enquiry with the Danish Biomedical Research Ethics Committee we were assured that this study was exempt from ethical approval as it was a questionnaire and interview study without the use of human biological material.

The questionnaire was designed to obtain information about the projects, e.g. whether the project was implemented in public or private health facilities (see Additional file 1), with the intention to get a better understanding of the projects and thereby the context of the qualitative data. The interview-guide employed for the interviews was semi-structured and had mainly open-ended questions delving into barriers and challenges related to screening, diagnosis, treatment and follow-up of GDM (see Additional file 2). The list of questions and appropriate probes were drafted by KKN and AK based on literature search, previous reported challenges mentioned by WDF project partners and broad issues, e.g. barriers in the health system, which we wanted to cover in the interviews. Finally, some specific information from the questionnaire also triggered questions during the interview.

Content analysis was used to analyse the interviews, which were recorded and transcribed immediately after they were conducted, making the analysis an ongoing activity as it allowed us to be more aware of emerging themes that we could probe further during later interviews. The interviews and questionnaires were then searched for meaning units and coded by developing categories. The categories were reviewed to make sure that no categories were describing the same phenomena, and subsequently organised into core themes.

Five of the projects are implemented in India, two in Latin America and the Caribbean, two in Sub-Saharan Africa, and one in China and Sudan, respectively. Two projects, Kenya and Cuba, are implemented by either the Ministry of Health or national government institutions. The remaining projects are implemented by local NGOs, local or international research institutions, hospitals or private initiatives; however, all projects are collaborating with national or state health authorities. Six of the projects are solely implemented at public/government health centres. The other five projects are implemented at both public/government and private (including faith-based) health centres. See Tables 1 and 2 for more information about the projects.

In this study a number of barriers to improving maternal health related to GDM were identified, including lack of trained health care providers - especially female doctors; staff turnover and lack of standard protocols, consumables and equipment; financing of health services and treatment; lack of or poor referral systems, feedback mechanisms and follow-up systems; distance to health facility; perceptions of female body size and weight gain/loss in relation to pregnancy; practices related to pregnant women’s diet; societal negligence of women’s health; lack of decision-making power among women regarding their own health; stigmatisation; role of women in society and expectations that the pregnant woman move to her maternal home for delivery.

According to our knowledge only a few studies have previously investigated barriers to management or postpartum follow-up of women with diabetes during pregnancy [28‐32], and none of these are from LMIC. Although these studies were conducted in a setting very different from our study there are certain similarities between the findings of these studies and ours. Hence, Bennet et al., Collier et al., Mersereau et al. and Razee et al. reported lack of concern about women’s health – either because they feel healthy or because they have less time for self-care due to the demands of the baby or other responsibilities – as a barrier to GDM management or postpartum follow-up [28‐31]. Fear of being diagnosed with overt diabetes was also identified by Bennet et al. as a barrier, although the reason behind this fear was not grounded in fear of stigmatisation, but more the prospect of having to follow a strict diet and regularly having to attend medical check-ups [28]. Collier et al. also identified cost of health services, diabetic supplies and healthy foods as barriers [29]. Finally, difficulties in accessing care and cultural issues impeding healthy diet and physical exercise were also identified by Razee et al., Mersereau et al. and Collier et al. as barriers to GDM management [29‐31].

Considering that WHO in the 2006 World Health Report concluded that there is a global shortage of almost 4.3 million doctors, nurses, midwives and support workers [24] it is not surprising that turnover and lack of trained health care providers is mentioned as a barrier for GDM services. Seven of the projects included in this study are implemented in countries where WHO assess there is a critical shortage of health service providers [24]. India is one of these countries and as only around 10% of doctors in South-East Asia are women [24] it is not surprising that respondents from India noted lack of female doctors as a particular problem.

However, as indicated by the respondents it is not only a problem of numbers it is also a problem of skills and training. Lack of knowledge has also been found to be a problem for the management of type 2 diabetes in LMIC [33, 34]. Thus, to ensure that women with GDM receive proper treatment, training of health care providers need to be initiated or scaled up. Lack of standard protocols on GDM diagnosis and management was also identified as a barrier to early detection and proper management of GDM. The lack of such protocols may reflect the limited attention that GDM has received in many LMIC, the lack of international consensus on the diagnostic criteria for GDM as well as existing protocols in their current form not being feasible to implement in many LMIC [19].

In addition, findings from this study also illustrate that health services and systems are disorganised and inadequately financed and can work as barriers for achieving specific health-related outcomes, in this case GDM detection and treatment. This is far from new, but health system planners and policy-makers should take these structures and aspects into account when initiating GDM services.

A substantial number of the barriers are societal or culture-related e.g. expectations that the woman transfers to her maternal home to deliver. While their relevance may vary, such barriers remain important according to our findings. Yet, they are largely beyond the realm of the health sector and therefore have to be addressed outside it through awareness and policies. Issues related to women’s role in society and how much emphasis is given to their health and well-being seems to be of particular concern and the findings from this study indicate that much still remains to be done to ensure women’s empowerment including the right to control all aspects of their health as stated in the Beijing Declaration adopted at the UN Fourth World Conference on Women in 1995 [35].

Finally, in this study all participants were WDF project partners and many of them are also practicing health care providers. In order to further illuminate the issue it would be important to undertake studies where women and their families are interviewed about barriers and facilitators for GDM services. Such a study should also focus on barriers within the control of the individual in addition to health system and societal/cultural barriers.

In this paper we examined barriers to GDM detection and treatment in health systems and society. In order to provide effective GDM services to improve maternal health in LMIC, programmes have to consider and address these barriers.