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School of Public Health and Psychosocial Studies, Auckland University of Technology, Taupua Waiora Centre for Māori Health Research, Auckland, New Zealand
Indigenous women's voices are largely silent in the literature because of a lack of opportunity to share their experiences and understandings of diabetes in pregnancy (DiP).
Aim
To synthesise qualitative literature describing the experiences of Indigenous women with DiP.
Methods
A librarian assisted, systematic search was conducted across CINAHL, EMBASE, Global Health, Medline, ProQuest, PubMed, Scopus and the Web of Science databases. International, peer reviewed studies published in English, between the years 1999 and 2019 that explored Indigenous women's experiences of DiP were sought. Thirteen papers were coded for recurring patterns and conceptual overlaps and synthesised into themes.
Findings
Analysis revealed four themes: ‘Poverty and Vulnerability: Colonisation's Legacy’; ‘Contradictions and Confusion: Understandings of DiP’; ‘Shame and Blame: Experiences with Health Professionals’; and, ‘Community and Care: Cultural Constructions of Health’.
Discussion
This review has revealed similar concerns and experiences of DiP among Indigenous women across communities in Canada, Alaska, the United States and Aotearoa New Zealand. To work with and effectively engage with Indigenous women, requires a shift from focusing on individual behaviours, to recognising and including cultural strengths, and addressing structural inequity in relation to healthcare.
Conclusion
This review has resulted in a call to action for researchers to work collaboratively with Indigenous communities to co-design culturally safe, appropriate, and relevant policies, programs, models of care and educational materials with Indigenous women.
The literature focusing on diabetes in pregnancy for Indigenous women is predominantly epidemiological, clinical, and focused on postnatal outcomes. This has led to a lack of understanding of Indigenous women's experiences.
What is already known
Globally, Indigenous women experience diabetes in pregnancy at up to four times the rate of non-Indigenous women. Statistically, Indigenous mothers and infants have much poorer outcomes than non-Indigenous mothers and infants.
What this paper adds
Working in collaboration and co-designing with Indigenous communities to ensure that research, diabetes programs and education are appropriate and include cultural elements could contribute to improved health outcomes.
1. Introduction
We acknowledge Indigenous Peoples as the traditional custodians of their lands and their continuing connection to cultures, communities, lands, and waters. We pay our respects to Elders past and present.
The ongoing impact of colonisation on Indigenous Peoples’ health is well recognised (
). Health inequities are especially apparent in the increased incidence of diabetes in pregnancy (DiP) for Indigenous women. DiP includes diabetes mellitus that is present prior to conception, and gestational diabetes mellitus (GDM) which develops during pregnancy (
). For this review, the phrase 'diabetes in pregnancy' will be used except where the information is specific to GDM. The language used to name Indigenous Peoples will reflect the language used by the original authors.
Mirroring the global increase in obesity and type 2 diabetes mellitus (T2DM), the rates of DiP are steadily rising, particularly in Indigenous populations (
). Indigenous women's voices are largely silent in the literature because of a lack of opportunity to share their experiences and understandings of DiP – understandings that are crucial to ensure that services are culturally appropriate, accessible, and effective. This review seeks to synthesise qualitative studies of Indigenous women's experiences of DiP.
2. Background
2.1 Diabetes in pregnancy
During normal pregnancy, endocrine and metabolic changes occur (
). A decrease in insulin sensitivity occurs in response to placental hormones and is a homeostatic mechanism to mobilise glucose, fatty acids and amino acids for the developing foetus (
Lung maturation can be delayed in infants of mothers with diabetes, yet due to the risks of delivering a large infant, early induction is often recommended (
Australian Institute of Health and Welfare Diabetes in pregnancy: Its' impact on Australian women and their babies. Diabetes series no.14. Cat. no. CVD 52.
). Infants are vulnerable to hypoglycaemia shortly after birth as exposure to glucose in-utero results in compensatory increased insulin levels. Due to the need for close monitoring, initial mother-infant bonding can be interrupted (
Aboriginal women in Canada and American Indian and Alaska Natives in the United States are two to four times more likely to have DiP than non-Indigenous women (
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
), and a focus on ethnicity diverts attention from modifiable risks for DiP such as social determinants.
Colonisation is a common determinant of diabetes in Indigenous populations and has been recognised as ‘the most significant social determinant of health affecting Indigenous Peoples worldwide’ (
). Yet antenatal care provides a unique and important opportunity to engage women, screen for various conditions and complications, introduce health promotion activities and act to reduce risks (
). However, if health care is not culturally relevant and safe, women may avoid attending or be less likely to effectively engage with or value advice (
Given the devastating consequences uncontrolled DiP can have for mother and child, the paucity of available literature and inequities in health care treatment (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
), there is an urgent need to explore Indigenous women's experiences of DiP.
3. Method
The aim of this review was to thematically synthesise literature describing the experiences of Indigenous women who had DiP to gain insight into: Indigenous women's experiences of having DiP; how diabetes education and healthcare during pregnancy is perceived by Indigenous women; and the recommendations for nursing practice and research that can be drawn from the international literature.
Due to the qualitative nature of the evidence sought, we took a thematic synthesis approach to weave together Indigenous women's experiences of DiP. Thematic synthesis involves systematic coding of findings from qualitative studies, followed by the development of descriptive, then analytical themes (
). A librarian assisted, systematic search of international journal articles, published in English, between 1999 and 2019 was conducted using the databases CINAHL, EMBASE, Global Health, Medline, ProQuest, PubMed, Scopus, and the Web of Science using search terms that identified Indigenous participants, types of diabetes mellitus and the words ‘pregnancy’ and ‘antenatal’. The MEDLINE (OVID), CINAHL, EMBASE, PubMed search strategy is detailed in Table 1.
Table 1Search strategy example.
S1
Indigenous*.af.
S2
aborig*.af.
S3
indigen*.af.
S4
native*.af.
S5
American native continental ancestry group/or Alaska natives/or Indians, Central American/or Indians, North American/or Indians, South American/or inuits/
S6
ATSI.af.
S7
torres strait islander*.af.
S8
Diabetes Mellitus, Type 2/ or Diabetes, Gestational/ or Diabetes Mellitus/
To be eligible for inclusion, studies had to contain Indigenous women's experiences of DiP. Studies were excluded if they did not contain first person accounts or were not in English, as the authors are only fluent in English. Most of the studies rejected were concerned with epidemiology, infant and maternal outcomes, or the postnatal period.
Full texts were reviewed by the first and last author and consensus reached on their suitability. A total of 13 papers that met the inclusion criteria were retained for quality appraisal. The 13 papers resulted from a total of 10 separate studies. Two papers were separate publications drawn from
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
) in Figure 1. Notable in the search results was a lack of qualitative research exploring Australian Aboriginal and Torres Strait Islander women's’ experiences of DiP.
The thirteen papers were evaluated for quality by the first and last authors using the Critical Appraisal Skills Program (CASP) Qualitative Checklist (
). The CASP checklist involves evaluating each article using ten questions that explore the study validity, ethical issues, rigor and clarity of findings, and the value of the research. As per
, each of the studies were scored with each of the 10 questions being worth a possible two points. Studies received zero, if the required information could not be located, one if some information were present and two if all required information was found. The majority of papers scored highly, although many omitted discussion of the researcher's positioning and relationship with participants. Appraisal scores can be seen in Table 2.
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Each paper was read and coded by the first author for (i) Indigenous women's experiences of DiP; and (ii) Indigenous women's experiences of diabetes education and healthcare. The key characteristics of the papers included in this review can be viewed in Table 3.
Gather information about barriers to preventing or controlling GDM.
97 pregnant American Indian and Alaska Native women
Qualitative interviews and a survey
Incentivising attendance at and including family members in diabetes education sessions. Health professionals need to understand the emotions inherent in a GDM diagnosis and perceptions of diabetes complications
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Explore the perspectives of adolescent American Indian and Alaska Native women on their awareness and understanding of GDM and a preconception counselling education program
13 American Indian and Alaska Native adolescents
Focus groups
Development of health programs to address risks inherent in unplanned pregnancies and GDM to promote healthy birth outcomes
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Pregnancy care should contribute to increasing women's autonomy, help them to identify support systems and raise awareness of DiP. Health care systems should be more patient-centred and contribute to addressing the harmful effects of colonial policies
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Explore the phenomenon of GDM for Mãori women living in a rural community to develop solutions to challenges identified by participants
10 Mãori women who had experienced GDM and/or had been exposed to diabetes in utero
Semistructured interviews
Recommendations include extending case management of individual women to their families; including referral to social services; ensuring Mãori women are screened for DiP; using decolonising frameworks in interventions; and, having skilled case workers to work with individual women and their families
To explore why women declined or did not attend diabetes education
63 Pima Indian women, 27 of whom were pregnant
Ongoing interviews with key informants and pregnant women and observation at prenatal visits and community and health social events
Recommendations include privileging women's experiences; engaging in elongated conversations with women to allow time to build meaning; offering prenatal group appointments; offering pre-conceptual education and case management; strengthening community-based efforts; and, facilitating the work of field nurses
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
To understand American Indian and Alaska Native women's perspectives on DiP, behaviours to reduce risk and make recommendations for a preconception counselling program for American Indian and Alaska Native girls
5 American Indian and Alaska Native women with a history of GDM or T2DM
Semistructured interviews and a focus group
In collaboration with health care professionals experienced in working with American Indian and Alaska Native communities, using culturally responsive and tailored information, provide women with preconception counselling and raise awareness of GDM in high risk communities
To explore cultural idea systems related to maternal diet and diabetes with two generations of women in an Aboriginal community
14 Aboriginal mothers and 14 Aboriginal grandmothers
Semistructured and unstructured interviews
Findings suggest increasing culturally appropriate, cross-generational education; introduction of prenatal programs; and, increasing health professionals understanding of cultural idea systems and the experience and emotional lives of their patients, could be beneficial
To describe urban Aboriginal women's perceptions of dietary treatment for GDM
29 Aboriginal women who had experienced GDM within the past 5 years
Semi-structured interviews
Recommendations include individual counselling and support that takes into account emotional issues around food choices. Research is required to develop a more in-depth understanding of women's interpretations of GDM and potential for prevention.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
To describe urban Aboriginal women's perceptions of dietary treatment for GDM
29 Aboriginal women who had experienced GDM within the past five years
Semi-structured interviews
Diabetes education needs to be delivered consistently and comprehensively in a supportive, positive, non-judgmental way. Health professionals need to be culturally safe and practice sensitively, cognisant of the ongoing impact of colonisation
9 Mi'kmaq women drawn from 2 communities who had GDM
Conversational interviews and talking circles
Nurses should: understand the SDOH and address societal barriers to promote equality in health care; listen closely and develop relationships with Mi'kmaq women to enhance understanding of their perspectives. Further research should explore how the SDOH impact on health in Mi'kmaq communities; which health promotion strategies would be effective in Mi'kmaq communities; identifying the prenatal needs of pregnant Mi'kmaq women; and, effective ways of evaluating the cultural safety and competency in clinical practice
Codes were compared for patterns and conceptual overlaps. Codes were collapsed into related areas to construct descriptive themes which were then developed into analytical themes following discussion with the broader research team (
4.1 Poverty and Vulnerability: Colonisation's Legacy
Authors acknowledged the ongoing impact colonisation has had on Indigenous Peoples’ health and wellbeing. Colonisation is associated with increased rates of GDM and T2DM for Indigenous women, inequity in the SDOH and women experiencing institutional racism (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Aotearoa New Zealand study reported five generations of women in her family, all having DiP.
The normalisation and acceptance of diabetes in Indigenous communities often results in a sense of fatalism – that is, believing that developing diabetes is unavoidable and inevitable (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). This fatalism and sense of inevitability can mean people are less likely to make lifestyle changes to avoid or reduce the severity of the condition (
attributed the normalisation of diabetes as contributing to low attendance at diabetes education sessions and having an impact on care seeking behaviour.
Women's capacity to manage DiP was complicated by the SDOH. Difficulty attending appointments was a commonly reported issue in several studies (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
participants discussed not being able to attend appointments due to not having a registered vehicle and not being able to afford the costs associated with travel. In
study, most participants did not have access to a car. For women with children, difficult access to or the affordability of childcare also represented a barrier to attending appointments (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
). Insecure housing, living in unsafe neighbourhoods, experiencing domestic violence and trauma, including the death or removal of children were discussed by women who participated in
Canadian study. Limited financial resources were also a major issue in several studies. Despite wanting to be proactive about managing their blood glucose access to, or the affordability of fresh food was sometimes a barrier (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). Women's understandings and beliefs about a diagnosis are a major factor in decision-making about whether (or not) they pursue treatment.
The ambivalence created by a GDM or borderline diabetes diagnosis, provided women with more scope to hold a range of interpretations and understandings about the meaning of their diagnosis. Although people's adherence to cultural systems and practices vary, it is important to contextualise disease constructs within potential cultural contexts (
work with Pima Indian women, developing diabetes was associated with low mood. Reliance on how they felt, as an indication of general wellness, risked women not seeking care if diabetes was symptomless. Many women in
) study also discussed not seeking treatment until symptoms were overt. Women often did not understand that they could be very unwell, before symptoms manifested (
). In both of these studies having diabetes was associated with complications rather than blood glucose levels, with little acknowledgement that complications could be avoided (
study were often confused about what they perceived as contradictory advice about food. For example, fruit could be perceived as unhealthy due to its high fructose content whereas chocolate could be perceived as good because due to its fat content blood glucose rose more slowly following its consumption. Women also had difficulty interpreting the nutritional information of various foods.
Pregnancy related mood, emotion and food cravings all complicated a woman's ability to adhere to a strict diet. Aboriginal women in
study struggled with spacing small meals rather than having one large meal, and eating prescribed foods due to morning sickness. Several women in this study described disordered eating such as not eating and only drinking, or binging and purging so they could eat but keep blood glucose lower, or hiding and consuming large amounts of junk foods such as sweets, crisps and soft drink.
Canadian study considered excessive weight gain, poorer health and GDM as normal and described themselves as ‘beasts’ if they gained weight during pregnancy. These authors drew attention to the way that negative discourses around Aboriginal women's health can be perpetuated and internalised by women. Although subscribing to a genetic cause, women in this study still expressed shame regarding weight gain and developing GDM. Additionally, they blamed other women in their community for not being more concerned about their health and weight, using words like ‘lazy’ and ‘unmotivated’ (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Women also discussed shame, and feeling scared, sad, and responsible for their unborn child being at increased risk of congenital malformations and developing diabetes in the future (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
study advocated for a return to cultural ways to improve health. Mi'kmaq women in another study advocated for planting vegetable gardens and starting a walking group or group exercise at a gym with family members (
). These women had also started to challenge structural inequities by advocating for a local foodbank to be established and for the health centres to hire full-time dieticians and commence diabetes education initiatives (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
study discussed empowering each other and encouraging Aboriginal women to speak up and ask questions during health visits. Empowerment and positive self-esteem were considered to be health protective factors in
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). It was revealed that discrimination manifested through women being denied options or opportunities. For example, a caesarean section being scheduled without any discussion of alternative options or women being ridiculed for gaining weight during pregnancy but not provided with strategies for weight loss (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). Using fear as a motivator could also have unintended consequences. For example, after being told if she did not control her blood glucose better her infant would be stillborn, one Aboriginal woman sometimes did not eat at all and existed on water (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). These practices encouraged women to disengage with formal healthcare and instead seek health information from the internet and trusted others within their own communities (
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
). Where health professionals were perceived as disrespectful and judgmental, women expressed difficulty with being able to speak up and process information (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
commented that although participants were dependent on medical care, there were often significant power imbalances and issues around the provision of culturally safe and competent care. This was unfortunate, as when care was perceived as supportive and respectful, coping with DiP was thought to be more manageable (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
, p. 193) recommended nurses working toward developing greater awareness of issues like ‘class, gender, and power’ to provide more acceptable care. In another study health professionals were urged to ‘interact with tact, sincerity, compassion, and respect’ (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
study perceived information provided to them as overwhelming, confusing and overly complicated. Having no continuity of care was also difficult, as different health professionals provided inconsistent advice on diet and target blood glucose ranges (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
study discussed having to advocate to get family members tested even in the case of one woman who had GDM in two previous pregnancies. The missed opportunities to diagnose GDM, potentially contributed to one woman having an extremely premature birth. Participants in this study also reported health professionals not explaining the need, reason, or results of tests (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
, p. 4) discussed women being subjected to ‘racialised discourses’ from health professionals, with GDM being defined to one participant as a ‘Māori condition’. This implied that GDM was inevitable, despite this participant having no family history of the condition. Yet, several participants in
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
study, women complained about the lack of information provided on GDM. However, even where women did have access, some reported feeling excluded by or stigmatised by health literature and public health messages. Aboriginal women did not see themselves represented in positive health promotions, which was interpreted as being ostracised and shunned (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Where health messages were aimed at Aboriginal women, they were invariably negative for example targeting Aboriginal women for smoking in pregnancy (
). A need for Aboriginal women to be represented in health literature and resources that are aimed at empowering and inspiring women to take control of their health was identified (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Additionally, it was suggested that education include Indigenous constructions of health such as balance between the ‘mental, physical, spiritual and emotional domains of life’, while avoiding tokenistic symbolisation (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
4.4 Community and Care: Cultural Constructions to Health
The majority of studies included in this review drew on Indigenous research methodologies and methods. Employing Indigenous research methodologies, revealed how participants’ realities were contextualised by socio-political systems, honoured Indigenous ways of knowing and being and cultural constructions of health, and led to more culturally appropriate and effective solutions.
As access to health professionals was found to be problematic, bringing care to the community could be a valid response. In
study, women were empowered by attending diabetes workshops, diabetes educators doing home visits, specialists conducting outreach clinics and diabetes educators phoning the women at home. Likewise, in
study, Mi'kmaq women valued community health nurses’ cultural knowledge. The community health centres discussed by participants were more than just a safe place to seek health care, they also functioned as community meeting places where people could socialise and practice and learn about culture (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). Listening to someone who had lived experience of GDM and was from the same cultural background was perceived to be more credible than information provided by a health professional (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). It was proposed that health information exchanged in healing circles could be more empowering and effective in creating trust and changing attitudes (
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
). There may also be value in working in collaboration with Elders, Medicine Keepers and Traditional Healers as these practitioners contributed a spiritual and holistic facet to healing, missing from Westernised medicine (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Education during GDM is considered an opportune time to assist women and their families to make lifestyle changes as they are highly motivated to protect the health of the unborn child (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Given women's fatalism regarding developing GDM due to its prevalence in Indigenous communities and families, authors of several studies recommended including family, friends and community in diabetes education (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Including family in education would: increase support for women who have GDM; increase the reach of diabetes education through the community; and, contribute to easier lifestyle interventions, as family food preferences are often cited as a barrier to women changing eating habits (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
study also acknowledged that their existing mothering role, and obligation to care for their community motivated them to cope and keep going physically and mentally. These women were happy that they could share their knowledge of GDM, with others and valued the reciprocal support they received from extended family and others in the community. Other researchers also raised the idea of reminding women of their traditional roles as nurturers and givers of life to encourage self-care (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
It was recommended that education on GDM, be delivered pre-conception as the advice around healthy eating in pregnancy to control blood glucose, are generally healthy eating guidelines that could potentially benefit all young Indigenous women who wish to eventually become mothers (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
) recommended incentivising attendance or including education in social and community events. Programs aimed at reducing the prevalence and assisting women to manage GDM could be more effective if they are promoted at community events and delivered within community (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
This review has revealed similar concerns and experiences of DiP among Indigenous women across communities in Canada, Alaska, the United States and Aotearoa New Zealand. These shared concerns and experiences among Indigenous communities internationally provide powerful evidence of the ongoing effects of colonisation on health. These findings are potentially transferable to Indigenous women in countries not represented in this review that have a shared history of colonisation.
As a profession, nursing espouses a commitment to accepting and respecting cultural differences (
). However, the experiences of participants in the reviewed studies revealed women feeling shamed, blamed, patronised, disrespected, and neglected by health professionals. It is incumbent on nurses to recognise that it is colonisation and the subsequent impact on protective cultural practices not culture that is responsible for the rates of DiP in Indigenous women. Connection to culture needs to be recognised as a positive determinant of health (
Salmon, M., Doery, K., Dance, P., Chapman, J., Gilbert, R., Williams, R., & Lovett, R. (2019). Defining the indefinable: Descriptors of Aboriginal and Torres Strait Islander Peoples’ cultures and their links to health and wellbeing. Retrieved from Canberra, ACT:
), rather than being seen as a problem or risk factor.
Non-Indigenous health professionals and organisations need to acknowledge each country’s history of colonisation, recognise how this history has impacted on the health of Indigenous Peoples, and work with Indigenous communities to learn how we can contribute to decolonising health care institutions individually and collectively (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
). To work with and effectively engage with Indigenous women, requires a shift from focusing on individual behaviours, to recognising and including cultural strengths, and addressing structural inequity in relation to healthcare (
Collectively, through our organisations, nursing needs to agitate and advocate for the enactment of policy and legislation that will ensure the delivery of culturally safe health care and the decolonisation of health services. As individuals, nurses can provide leadership, model cultural safety and provide patient-centred care (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
). Understanding the emotions experienced by women who have DiP will assist nurses to focus on helping and empowering women rather than blaming and using fear to motivate ‘compliance’ (
There is overwhelming evidence that if we are to make a difference, we need to work collaboratively ‘with’ communities. In relation to DiP, this review highlights the need for diabetes education to be delivered collaboratively with Indigenous health professionals, Traditional Healers and Elders (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Furthermore, there is a need to incorporate local cultural constructions of health and a holistic approach to diabetes treatment and management. Education about DiP needs to be expanded to include families and communities and should ideally begin in adolescence, before women conceive (
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
). Due to the interrelated nature of GDM and T2DM, when designing community-based interventions and education programs, T2DM along with DiP should be discussed. Like T2DM, DiP is normalised and often expected (
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
The prevalence of DiP in Indigenous women and the intergenerational outcomes makes this an issue of international urgency. Disappointingly, we did not locate any papers exploring Aboriginal and Torres Strait Islander women's experiences of DiP in Australia and only one paper examining Aotearoa New Zealand Māori women's experiences (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
). Australian and Aotearoa New Zealand focused research is urgently required.
Given the dearth of existing research, there is a need to develop in-depth understanding of the prenatal needs of Indigenous women diagnosed with DiP (
). Fatalism regarding the inevitability of DiP and T2DM in Indigenous communities needs to be understood and strategies co-designed to disrupt the idea the diabetes is inevitable (
). Further work should also be undertaken to measure existing understandings of diabetes and co-design community based, culturally appropriate education programs in collaboration with other services to reduce inequity in the SDOH (
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
This review was limited to English language which could have potentially excluded important insights. Although we have synthesised information from Indigenous communities across the globe, we do so with the caveat that Indigenous Peoples are heterogenous across and within countries. Research and interventions should be co-designed and developed within individual communities to ensure cultural relevance and acceptability.
7. Conclusion
This review has synthesised international literature to contribute to a more complete understanding of Indigenous women's experiences of DiP. Indigenous women's experiences need to be heard to better understand how they conceptualise, experience and respond to a DiP diagnosis to guide the development of culturally appropriate and acceptable DiP programs. We propose a call to action and encourage researchers internationally to work collaboratively; come to their work with a preparedness and willingness to listen to Indigenous women; draw on Indigenous research methodologies; and, partner with Indigenous communities. We argue these are essential if we are to co-design culturally safe, appropriate, and relevant policies, programs, models of care and educational materials to prevent DiP in Indigenous communities, and better support Indigenous women experiencing DiP. Thus, we can hope to reduce the burden of DiP in Indigenous communities and disrupt the intergenerational cycle of diabetes.
Authorship contribution statement
Tamara Power: Conceptualisation, Methodology, Analysis, Writing Original Draft/Review and Editing, Visualisation. Denise Wilson: Conceptualisation, Writing Original Draft/Review and Editing. Leah East: Conceptualisation, Writing Original Draft/Review and Editing. Belinda Cashman: Conceptualisation, Writing Original Draft/Review and Editing. Jasmine Wannell: Conceptualisation, Writing Original Draft/Review and Editing. Debra Jackson: Conceptualisation, Methodology, Writing Original Draft/Review and Editing.
Funding
This project received no funding.
Ethical Statement
An ethical statement is not applicable as this paper is a review article.
Conflict of interest
No conflict of interest has been declared by the author(s).
Recommendations from American Indian and Alaska Native adolescent girls for a community-based gestational diabetes risk reduction and reproductive health education program.
Capacity-building and participatory research development of a community-based nutrition and exercise lifestyle intervention program (NELIP) for pregnant and postpartum Aboriginal women: Information gathered from talking circles.
The experience of gestational diabetes for indigenous Maori women living in rural New Zealand: qualitative research informing the development of decolonising interventions.
Salmon, M., Doery, K., Dance, P., Chapman, J., Gilbert, R., Williams, R., & Lovett, R. (2019). Defining the indefinable: Descriptors of Aboriginal and Torres Strait Islander Peoples’ cultures and their links to health and wellbeing. Retrieved from Canberra, ACT:
Reducing risk for gestational diabetes mellitus (GDM) through a preconception counseling program for American Indian/Alaska Native girls: Perceptions from women with type 2 diabetes or a history of GDM.
Patient and caregiver perspectives of health provision practices for First Nations and Metis women with gestational diabetes mellitus accessing care in Winnipeg, Manitoba.
Working with Indigenous peoples of Australia and New Zealand.
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