The experience of gestational diabetes for indigenous Māori women living in rural New Zealand: qualitative research informing the development of decolonising interventions

Indigenous women are at greater risk for developing gestational diabetes mellitus (GDM) than non-Indigenous women. Rates among Native American (7.9%), Canadian First Nations (11.5%), Indigenous Australians (8.4%), and Māori in Aotearoa/New Zealand (New Zealand) (6%) are higher than those of non-Indigenous women in those respective nations and the total international incidence (2–5%) [1–3].

The short-term effects of GDM are well documented [4] and our understanding about the long term consequences for mother and child is growing as results from longitudinal studies become available [5, 6]. For mothers, GDM is associated with perinatal complications, maternal obesity, T2DM [7–9] and cardiovascular disease (CVD) [10, 11]. GDM is also associated with an increased life time risk for offspring becoming obese or developing T2DM [12]. Seminal studies among Pima Indians, a Native American population with the highest international incidence of GDM [13], and one of the highest incidence T2DM in adults and children [14] and obesity [15], found diabetic pregnancies were ‘responsible’ for 40% of T2DM in offspring (5–19-years) [16].

For GDM, the argument that “diabetes begets diabetes” and other long term conditions [17] is compelling for Indigenous people [18]. In New Zealand adults, Māori self-reported rates of T2DM are double that of non-Māori [19]; and the incidence of T2DM has increased five-fold in children under 15-years but is significantly greater for Māori than NZ Europeans (3.4 cf. 0.1 per 100,000) [20]. Substantial disparities also exist in rates of obesity between Māori and New Zealand European adults (46.5% cf. 25.7%) and children (5–14 years) (15.7% cf. 6.7%) respectively. Māori childhood overweight and obesity after exposure to GDM in utero is strongly associated with subsequent development of T2DM and CVD [2]. Further, GDM is a significant predictor of maternal CVD [10], the leading cause of mortality among Māori females [21].

Critically, early detection [22–24] and intervention of GDM can substantially reduce maternal and offspring complications [13]. Yet GDM is considered a complex condition [10] and difficulties exist in quantifying causal factors which affects the development and implementation of screening, diagnosis and management protocols [4, 13] particularly for marginalised peoples [25, 26]. While GDM susceptibility is attributed to genetic, social and environment factors [13], genetic variation in T2DM risk probably only very modestly contributes to the predicted risk of GDM [27]. Despite extensive research over the past twenty-years identifying T2DM as a polygenetic disease, the potential epigenetic interactions between genes and the environment in Indigenous populations remains poorly understood [28, 29].

Most experts agree that a focus on “ethnicity as a proxy for genetic variation” being a primary determinant of GDM risk diverts attention away from the wider determinants affecting Indigenous peoples’ health [30]. In fact, the contribution of socioeconomic and psychosocial deprivation to GDM prevalence among Indigenous women has not been adequately evaluated [31]. The experience of “unequal treatment” [29] for Indigenous women with GDM also receives little attention, despite several small studies and a recent audit reporting inequities in screening, diagnosis and management of GDM between Māori and non-Māori [22, 32, 33]. This research highlights the need for qualitative data that not only provides rich and meaningful information, but can also be a powerful tool for change [34] and to inform the development and implementation of effective interventions [35].

The paucity of qualitative research exploring Indigenous women’s experiences and perceptions of GDM [11, 36–38] was highlighted for us when conducting research on T2DM. While undertaking a qualitative study in a rural Māori community about the complexities of living with diabetes, we noted that a common, often emotional, discourse about the experience of diabetic pregnancies was emerging from the data.

Our participants lived in Northland, New Zealand, a site chosen for its unique sociodemographic and geographical issues. There is high regional deprivation in Northland that is experienced more by Māori than non-Māori (39% cf. 14%) [39]. Māori in Northland are markedly disadvantaged compared to non-Māori across all socioeconomic indicators, including educational attainment, unemployment status and income level and are more likely to live in rented accommodation and overcrowded households [39]. Geographic barriers to accessing health care are also notable in Northland [40]. Access to secondary diabetes care services was 150 km away from the community we were working with.

Although Māori represent only 26% of Northland’s female population of childbearing age, McGrath and Baldwin found that 56% of those diagnosed with GDM and available for follow-up at 2-years had developed T2DM or impaired glucose tolerance (IGT); over 33% of these Māori women, aged in their thirties, probably had undiagnosed pre-pregnancy IGT [33]. Given the significance of the health issue and a commitment to give voice to Indigenous Māori women in ways that could potentially inform solutions, we aimed to explore the phenomenon of GDM for Māori women living in a rural community.

The primary aim of this study was to investigate the experience of GDM amongst a sub-sample Māori women, enrolled in a larger pilot study designed to improve T2DM outcomes. The secondary aim was to develop potential solutions to the challenges identified by participants. This research adopted qualitative interview methods to explore the perceptions, attitudes and emotions [41] of Māori women with T2DM around their experience with GDM. The researchers utilised a Kaupapa Māori research methodology [42–45]. Kaupapa Māori research seeks to benefit Māori through critiquing socio-political systems that create inequities for Māori and by rejecting victim blaming and deficit theories [46]. This framework prioritises Māori ways of knowing and Māori realities [45, 47].

The data drawn on for this paper derived from ten participants who were a sub-sample of a larger study (n = 27) undertaken with Māori living with T2DM who resided in the selected community within Northland. The main inclusion criteria for the larger study were: aged 18-years and older; having a glycated haemoglobin (HBA1c) > 53 mmol/mol; and being enrolled with the local primary care clinic. The ten participants advised that they either had a clinical history of GDM (n = 8) or had been exposed to diabetes in utero (n = 2). Eligible participants were recruited via the local primary care clinic between September and December of 2015.

For the larger study, a Māori nurse at the local primary care clinic contacted eligible participants, providing them with information about the research and invited them to participate. The contact details of all consenting participants were then provided to the lead researcher, who contacted participants via phone or home visits (when no phone service was available). The lead investigator provided detailed information about the research, answered any questions from women and obtained written informed consent and confidentiality agreements (including accessing their diabetes-related health data from the clinic) for each participant. Thirty-three participants initially agreed to take part in the larger study and six have withdrawn over the duration of the study, primarily because of moving from the area.

Open ended, semi-structured, face-to-face interviews were undertaken with the ten women due to their ability to capture rich narrative data [48] (Interview Schedule refer Additional file 1). Interview questions were based around participants’ experiences of T2DM, and GDM. Interviews were audio recorded and lasted approximately forty-minutes. They were undertaken in participants’ homes or the health centre, or a mutually agreed venue. The lead researcher transcribed the audio recorded interviews and participants were invited to review, edit or change their transcript prior to data analysis.

A general inductive approach was used to analyse the data from repeated readings of the transcripts, to identify and produce categories and themes that aligned with the research objectives [49]. The lead researcher independently coded the data [50], and discussed the codes and themes with two experiences Kaupapa Māori researchers, who had access to the interview data.

As this study involved human subjects, ethnical approval could not be provided by the University of Auckland but was received from the NZ Health and Disabilities Ethics Committee HDEC Northern A (15/NTA/107) on 19/08/2015. The primary care provider involved in this study signed a memorandum of agreement with the University of Auckland on 27/07/15. The Health Research Council of NZ funded this study as part of a post-doctoral award (15/428); funding covered the design of the study, and the collection, analysis and interpretation of data, and writing of the manuscript by the primary author. Consent for data used in this study was cover by consents for the larger study. Mana Tū Trial Registration No: ACTRN12617001276347

Participants’ understandings and experiences of GDM were influenced by their family histories of GDM and from their exposure to deprivation and complex living contexts. The women’s narratives revealed that the diagnosis and management of their GDM were hindered through missed opportunities in the health system and through poor communication and rapport with health care professionals and health care services. Despite these barriers, it was evident that participants went to great lengths to try and manage their GDM.

In describing their experiences of GDM, Māori women living with T2DM in Northland were clear that health providers had failed to intervene in ways that would have potentially slowed or prevented progression of GDM to T2DM [13]. Participants revealed missed opportunities for appropriate diagnostic testing, treatment and health promotion programmes for GDM. Furthermore, engagement by health services with family and social services was poor. As a result, psychosocial issues were rarely addressed and cycles of intergenerational poverty and disadvantage prevailed.

Such breaches of Indigenous women’s rights to health and social services [51] underscore United Nation’s recognition of colonisation as the most important social determinant of Indigenous health [52, 53]. Upstream colonial processes (political, social and economic), both historical and contemporary, are causally associated with the deprived contexts that initiate and sustain the disproportional burden of GDM experienced by Indigenous women [29]. Study findings have provided important information to inform development of interventions. We see opportunities for evidence informed case management, whānau engagement, input from social services, evidence-based medicine for long-term management of T2DM, including access to bariatric surgery when appropriate. Equally, findings reinforce that interventions must occur within a decolonising framework [45].

Case management for poorly controlled T2DM is effective with individual improvements in HbA1c and low-density lipoprotein (LDL) levels [54]. Others have described the potential benefits of case management for GDM to service pathways, including improved transfer from care in the community to diabetes specialist and hospital-based services, and the seamless and timely resumption of local general practitioner (GP)-led postnatal care, and appropriate referrals to social services that address broader social issues (e.g. housing) [55]. However, the findings from our research suggest extending case management beyond the individual to include the family.

Oster et al. [11] recommend family-based case management programmes for the care of First Nation’s women’s pregnancies, arguing that such care responds to individual identities, experiences and perspectives, while simultaneously utilising the whānau to disseminate knowledge, engender support, and enhance awareness of risk factors. The fact that opportunities to address GDM in our cohort were missed is unacceptable, particularly as pregnancy is considered an important “teachable moment” [56] for mothers who are highly motivated to safeguard the health of their unborn child [57]. Sound family engagement is critical to such ‘opportunities,’ particularly when it facilitates broad dissemination of diabetes-related knowledge and recruits spousal, whānau and community support [58]. The wider benefits of whānau engagement, including the reduced likelihood of postpartum depression [59] and other common stress-related conditions [60], are well established.

Findings also highlighted the failure to provide systematic, targeted screening and preconception education and counselling of young Māori women and their whānau [57] in addition to culturally safe care and follow-up [24, 61]. The literature and our findings suggest that robust referral pathways to social services are essential [62]. Consistent with best-practice recommendations from the International Association of Diabetes and Pregnancy Study group [63] testing criteria must be regularly evaluated to ensure that it achieves quality results, including equity in GDM short and long term outcomes for Indigenous people [10, 64].

Finally, interventions must sit within a decolonising framework that empowers women, rejects deficit victim blaming discourses and recognises contexts of deprivation. Plans to test a novel decolonised intervention – Mana Tū - within the context of primary care are underway in this rural community. Mana Tū was developed by a Māori-led collaborative of primary health care workers and researchers, and co-designed with whānau (patients and their families) to support Māori and other people living within contexts of deprivation with poorly controlled diabetes (HbA1c > 65 mmol/mol) assume greater control of their diabetes. Crucially, Kai Manaaki (skilled case managers) employed to work with whānau with diabetes and prediabetes can direct whānau to central hub for referral to a cross-sectorial network of services to address the broader determinant of health.

Our study highlights the challenges of preventing, halting or at least slowing the progression of GDM to T2DM in Māori women and suggests extending case management beyond the individual to include the family. The implementation of Mana Tū in a rural primary care clinic in Northland is delivering Māori-centred case-management of diabetes and providing access to cross-sector services to address the wider social determinants of Indigenous health equities. The projected demographic drivers of Māori diabetes - lower average age of diabetes onset and increasing numbers of young Māori women of reproductive age, exposed to diabetes and/or obesity in utero [39] - reinforces the urgency of such Māori-led initiatives.