Participants accessing health care services for gestational diabetes in Winnipeg ranged in age from 18 to 43 years of age. On average they had three children (range 0–10), and 16 were pregnant. Four women were living on-reserve, but travelling to Winnipeg for healthcare. All pregnant women are to be screened for GDM in Canada [
4]. In Winnipeg this initial screening usually takes place with a general practitioner, obstetrician or midwife. Women who are diagnosed with GDM are encouraged to meet with an endocrinologist, diabetes nurse, and dietitian. First Nations women travelling into the city from nearby reserves commonly access these services at the Health Sciences Centre. Women from more remote First Nation communities generally attend prenatal and endocrine clinics based out of St. Boniface Hospital. Smaller community health clinics and centres in Winnipeg also provide education to women with GDM. Dietitians and nurses also provide individual counselling at these community sites as well as additional resources and health service referrals. Eighteen or 62% of participants in this study were prescribed insulin to manage their GDM. Nine women had GDM at the time of their interview, while 11 had experienced it previously. Nine had subsequently developed type 2 diabetes.
Health service divisions
Two main categories arose from the interviews and focus groups with participants and advisors. The first category, ‘Health Service Divisions’ is made up of two themes: ‘assumptions and impacts of blame’ and ‘burden of responsibility’. Both groups talked about barriers they felt limited access and quality of prenatal care along with diabetes education. Aspects of patient and caregiver communication that may compromise the delivery of prenatal care to First Nations and Métis women with GDM was also discussed, as illustrated in the following quote by Suzanne, a prenatal program manager with the provincial government:
I don’t know if it’s so much access to healthcare because I think in Winnipeg there would be access, but again it’s more trust of the system that there has been so much reporting done and things. And that they don’t want to be identified as people that have problems, right? I mean you’re always stigmatized as people that have all these challenges.
Assumptions and impacts of blame
For First Nations and Métis women with GDM seeking prenatal care in the city of Winnipeg, interactions with healthcare providers can also be negatively influenced by a lack of certainty when it comes to causation and risk. A diagnosis of GDM labels the pregnancy as being “at risk.” It may be assumed that women who develop GDM are not in control of their weight, level of activity or have poor eating habits. These assumptions may be reflected in the ways First Nations and Métis women are treated by their health care providers, as Rebecca, a physician from a Winnipeg clinic empathized:
There’s so much guilt and shame that women have put on them all the time over everything. And I think diabetes is another thing too because it’s not self-induced, but we tell them you have to watch your diet. You have to exercise. And then the women that come back and their sugars are still high. I think they’re worried that we blame them for not caring enough about their pregnancy or baby.
She recommended that, as health care providers, “we have to get over that hump and take the guilt away because that’s why they don’t come back to us. Maybe we lecture more than we listen.” Carolyn, a former nurse, described working at a diabetes clinic where she “did not care for the attitudes of the physicians that worked there.” She explained: “it was kind of a ‘blame the victim’ approach. [They] would say, ‘well, she didn’t stick to her diet, well why didn’t she?’ without any attention to all the various other problems that might be impacting on their ability to follow the diet.”
First Nations and Métis women feel these judgments in their interactions with health care providers, even though as Amber noted, “any woman can get it, it’s just more common in Aboriginal women.” Participants seeking care for GDM talked about feeling judged or looked down upon by their health care providers. Sharon recalled meetings with a dietitian: “The way that she was talking about the diabetes, kind of made me feel that it was my fault that I actually had it. Like that I wasn’t watching what I was doing to begin with, and this is how I developed it.” Darlene also had a negative experience. The dietitian she met with made her “feel like a child because she had her plastic apples and bananas and I was insulted by that. I’m 35 years old you know. Don’t insult me. I know it’s healthy and what’s not.”
The explicit blame and judgment of women with GDM in Darlene’s statements reveal were similarly described by Tina, who was living in a reserve community at the time. She talked about a good friend who had GDM with all of her pregnancies who was asked by a local nurse to talk to prenatal groups about her experiences. Tina provided this explanation as to why her friend decided not to participate:
In my community they don’t really judge people with it because we know that we could be getting it and we don’t know. But now a lot of people are starting to notice that gestational diabetes are not happening to older women. It’s happening to younger women now. Like say if my friend went around with the nurse and she could say her side of the story. But I guess she was too shy and too afraid that people would judge her because she had it right through all her babies and she had to take insulin. I think what people would judge her by is that she wasn’t eating right and everything, and blame her for it. But it’s not only her fault. I think it’s just passed down through our parents and they get it from their parents. It just goes from generation to generation, actually.
Comments made by Celeste, a midwife, further illustrate how health care providers’ frustrations can be misconstrued as blame or judgment. She described one of her First Nation patient’s lack of compliance as “poor attitude” by coming to her prenatal appointments “with juice cans and if you asked her if she changed her activity, or was eating in the way the diabetes nurse had talked to her: ‘well, no not really’.” Although her level of caring for her patient and baby is illustrated by Celeste’s obvious disappointment and worry, other advisors felt that health care providers may need to work on their level of understanding with First Nations patients. According to Cheryl, a First Nations woman working with a prenatal health agency, practitioners must be able to interact with tact, sincerity, compassion and respect. When asked how she felt current programming for pregnant First Nations women could be improved, she responded:
It’s all about attitude. A lot of times they’ll wear their doctor’s hat or their nurse’s hat or their professional hat and they use a lot of terminology that [women] can’t relate to. A lot of times I think if you come from a low place, you’re going to present as timid and shy. And if you’re already at that doctor’s appointment and you’re feeling that way, it’s kind of hard to hear what’s being said to you. Especially when you’ve got an attitude where somebody’s telling you [that] you have to do this and sometimes that information is presented in a really disrespectful way. And you feel that you’re being looked down at. So, I think attitude plays a huge part in terms of the kind of result you’re wanting to achieve with the individual.
Burden of responsibility
Contradictory education messages when combined with the “bureaucracy” of the healthcare system can lead to inconsistent service provision or divisions of responsibility in the clinical setting that often places the burden on patients. Women may not have their own established general practitioner or obstetrician in the city, especially if they are temporary residents or traveling into Winnipeg from reserve. With the exception of the four women living on-reserve at the time of the study, most participants were accessing prenatal services from smaller health centres or attended outpatient hospital clinics where there seemed to be less consistency or support. As one of the participants, Stacey lamented, “I don’t know what to think but I think that it’s because there’s so many different doctors seeing me, they all tell me something totally different.”
Another participant, Amber, talked about the lack of information when she went to the clinic and would see “maybe one pamphlet” on gestational diabetes. Because she was over 12 pounds when she was born she thought, “I was going to have a really overweight baby.” Her main source of information on potential outcomes and risks associated with GDM appeared to be almost exclusively based on personal experience, resulting in fear and anxiety to discuss her concerns with care providers or family. As she described her diagnosis with GDM: “it kind of was upsetting because I didn’t know what to expect, because you don’t hear a lot about it. We weren’t taught anything about it.” Doris complained about a lack of support in the city and suggested there should be “a lot more people going out and talking about [GDM] – the health reasons.” She went on to say, “you’re kind of shuffled around here. There’s some women who come down here [from reserve], and they don’t know anybody.” Although she had attended prenatal drop-in groups herself she found them to be more focused on “breastfeeding and your child’s temperament.” Gestational diabetes was “just not a topic that you really bring up.”
Several advisors mentioned barriers such as lack of time and resources prevented them from responding to First Nations and Métis women diagnosed with GDM. Health care providers at a Winnipeg hospital felt constrained over budgetary allowances and staffing. A nurse, Jane, explained: “the resources are there, but they’re very stretched. In terms of being able to, in an innovative way, create more time and other programs to support people with gestational diabetes. I don’t know if support groups or group classes would be beneficial.” She went on to suggest that perhaps, “we could improve on that by offering group classes or support groups. I think that that might be something that might be for another area or another organization to provide.”
Another advisor and prenatal program administrator, Suzanne, similarly commented on the peer group setting that “makes GDM easier to talk about”, but went on to say, “I think it’s just one of those things that it could be done with ‘here’s the brochure.’” The responsibility of dealing with the prenatal and postnatal challenges of GDM it appears can therefore be diverted to the pregnant patient or local clinics and agencies without sufficient support or explanation. This individualization of care can also extend from the clinical to the community setting. It is often up to women to attend community prenatal meetings for education and support while managing their own blood glucose and lifestyle regimes. Susan, a dietitian, commented that she and her colleagues at a hospital-based diabetes education centre often refer First Nations and Métis women with GDM to community agencies that specialize in prenatal care, although she was not sure how many patients attended: “some might phone and others they say they’ll do it. I don’t really know if they ever go or not.”
In the community as well as the clinical setting Carolyn, a prenatal health researcher and nurse, noticed that often women were receiving “different information about what to eat and the blood sugar readings they should be aiming for.” Even though there are benefits of having specialists, such as endocrinologists, manage conditions such as GDM, the entire health care team, “needs to know what the goals are so they’re giving the same message.” Unfortunately this may not be a reality as members of the healthcare team sometimes out of frustration with patient compliance, transfer GDM patients out of their care. Celeste, a midwife, responded immediately when asked what would happen if First Nations women were struggling to manage their GDM at her clinic. She exclaimed: “transfer them to OB!” Her colleague Barb, a diabetes educator, elaborated further: “obstetrics don’t see gestational diabetes as serious either and don’t refer them to an endocrinologist. Don’t continue sending them somewhere for education. I think that whole message of just the urgency and the seriousness of gestational diabetes and how serious it can be is not out there, with even a lot of the health care providers.”
Patients’ confusion as a result of inconsistent messages and attitudes can lead to instances of women who “fall through the cracks” or perhaps become apathetic about formalized care after a negative encounter. Under these circumstances women may be more susceptible to misinformation by isolating themselves, which can be particularly dangerous when it comes to managing diet and insulin. Faye knew that, “for anyone not familiar with adjusting the insulin amounts that they’ve been prescribed, it can wreak havoc.” Her endocrinologist, however, allowed her to adjust her own insulin. As she said, “I didn’t need his permission; I did it on my own. He wasn’t supervising my activity.” Lorna had a similar experience. After receiving mixed messages from a nurse and dietitian about her diet, she was relieved when her obstetrician told her, “you can eat anything you want when you are on insulin, just limit yourself.” She continued on to relay her doctor’s advice: “you’re the only one who could tell if your sugars are getting too high. You can up your insulin; just let me know when you up it.” Consequently, her insulin “started off at 4 [and increased to] 20 units during the day.” Her reaction was nonetheless positive. As she said, “it’s not bad. He kind of has me doctoring myself!”
Patient and caregiver dynamics
The second main category ‘Patient and Caregiver Dynamics’ includes the two themes of ‘establishing trust’ and ‘leveraging compliance’. As Violet, an Anishinaabe Elder, expressed in the following quote, patient and caregiver dynamics require a thoughtful approach in establishing mutual understanding and trust between individuals:
I always ask myself, “who are we to judge?” I don’t know the pain of that person. Everybody has a story. They might have been traumatized in their childhood. And maybe they’ll never get to the place where their life is going to change. So they continue to live their choice. Whatever their choice is, I know that the Creator God understands it.
Establishing trust
The circumstances described in the previous section place First Nations and Métis women in a position where they feel they are required to navigate within the larger health care system without sufficient or consistent support. This added responsibility does not necessarily foster trusting or caring relationships between the health professional and patient. For instance, health care providers seemed to struggle with education messages in terms of the short-term and long-term health risks associated with GDM. Carolyn was conflicted in her opinion as a nurse: “how helpful it is to say that you’re going to be more at risk for diabetes in later life? That’s just an anxiety producer I think, unless you give women some of the tools and suggestions for what they need to prevent that from happening.”
For women who have already had GDM and delivered a healthy baby, they may not necessarily believe that complications could arise. Stacey, for example, was frustrated with the care she was receiving at the time of her interview. She was receiving conflicting messages from her care providers. She did not seem to know what to believe and stated: “they say [the diabetes] was there before I got pregnant and they say it’s going away. Then they say that I have to lose weight. And then, they say that any sore I get won’t heal. I don’t even want to listen to it anymore.” Diane was also confused and angry. She said, “gestational diabetes in general…I don’t know if it is dangerous ‘cause I’ve never been told if it is or it isn’t!” The dietitian she was seeing did not believe the written food records she kept were truthful because of her continued weight gain and told her, “how can I help you if you’re not honest with me?”
Several advisors were also aware of these communication issues. Health care professionals working in a diabetes education centre talked extensively about establishing trust with patients through support, mutual respect and reciprocity. A dietitian, Heather, explained: “they need to talk about things, which gives the level of trust [for them] to be more open and receiving to any recommendations that you might give because you’re looking at the whole person in totality and not just the disease.” From her perspective as a nurse, Jane described it this way:
I think that’s important in any therapeutic relationship. You have to understand where the person is coming from, what their perspective is. If you don’t take that minute or two to understand that information, then you’re just telling someone what they should think and should do. And your chances of success in terms of adherence, is probably lessened.
Participants also discussed the importance of taking the time to engage in a reciprocal exchange. Linda said, “my GP is just a fantastic doctor because he sits there and actually listens to his patients. He respects that they know as much about what’s going on with their body as he probably does, if not more.” Over half of the participants, however, had never heard of GDM when they were first diagnosed. Carole explained that she would have appreciated another perspective from someone who had experienced GDM and could “show you how it is, just to prove that the dietitian isn’t just there to tell you what to do.” Four other women also talked about the idea of a peer or support group for women with GDM to help them better understand its complexities and also to create more awareness in a culturally safe environment. As Sharon suggested, “because if you don’t know anyone else who’s had it, you don’t know how you’re feeling, if how you’re feeling is normal. If you’re talking to someone who hasn’t experienced it, they don’t know how you’re feeling.”
Sophia, a Métis community activist and social worker described similar circumstances based on her work with an inner-city social services agency. She explained that health professionals working in the “inner city” communities in Winnipeg do not have the same kind of credibility as another First Nations or Métis peer to identify with. As she stated, “you haven’t lived my life.” She went on to say, “I think overall you’re talking about a very disempowered community, so trying to come up with ways to empower them to think that they actually have control in their lives on a variety of factors is pretty challenging.” Sophia and an Elder, Violet both talked about the importance of trust and changing health professionals’ attitudes towards the strengths of lay teachers from the community to motivate women to move beyond their past and current circumstances. Violet talked about the benefits of healing circles, to speak to women not at a level of education, but instead, “go to the heart and the spirit of the individual….and perhaps they might develop the courage to speak about what is most pressing and stressful in their lives at the moment.”
Leveraging compliance
Interactions in a clinical setting with primarily health professionals who do not have a similar cultural background unfortunately do not always provide the opportunity for women to express themselves while coping with GDM. Several practitioners were aware of the potential for miscommunication under these circumstances. A nurse-manager, Allison talked about the delicate balance that needed to be maintained during her interactions with patients at the inner-city clinic where she worked. She said, “it’s a two-way street. You have to feel that there is something being received and given back, and that there’s a transaction happening. It’s more than just you sitting there and loading them with information.” Other health professionals working in a hospital setting spoke about the concept of “forced adherence”, or as Jane explained, “adherence facilitated through guilt, shame and ridicule.” In other words the fear or “scare tactics” that some health care providers use as leverage to gain compliance and reinforce hierarchy. A colleague of Jane’s, Heather, explained why their health care team doesn’t resort to such tactics: “they’re not going to come back if you do that. That’s sort of counter-productive.”
Power struggles between care providers were also described by participants as negatively impacting care and causing distress and confusion. As Stacey said, “they were too busy trying to scare me to listen to me.” Several participants conveyed their fear and anxiety about GDM that appeared to result from a lack of comprehensive information transferred from care providers. Consequently, some would tend to disengage from the clinical encounter, perhaps to emotionally manage the added stress. Anita already had so much to deal with in her life having lost a child to sudden infant death syndrome and raising two grandchildren in addition to her four children. She would often “forget” to ask questions when she saw her doctor for GDM following her son’s birth and said, “there are still questions that I’d like to ask about it too, like what does it do to your body? I see women with diabetes and they don’t have a leg, you know. Why’s that?” Lena also found the diabetes education she received complicated. She said, “I like reading, but I couldn’t get into it. So I can imagine what it’s like for other women that don’t know [how] to read, [are] afraid to ask questions, don’t want to be embarrassed.”
During their interactions with health professionals, some participants expressed that they felt socially responsible to act more “outgoing” during health care encounters in order to feel accepted and respected. Marion talked about this concept of needing to be “outgoing” in order to positively adjust to GDM recommendations and feel support and approval from care providers. Marion was not able to achieve this for herself, but recounted the experience of a close friend, “in her second pregnancy, she listened [to her doctor] and she was more outgoing and that. And she never had gestational diabetes in her second pregnancy although she had it in her first.” Other participants were more self-assured and assertive, as Lori urged: “we as patients should be asking, ‘well, why do we need to do that?’ We’ve got to ask questions.”
Both Linda and Faye were confident and knowledgeable as they talked about their experiences with GDM, as well as their interactions with health care professionals. Faye had challenged herself to successfully manage her GDM and the type 2 diabetes that developed postpartum. During her interviews she said she felt a need to impart a sense of independence and empower other First Nations women to confront gestational diabetes in a positive and powerful way. She wanted to know what was happening at every appointment and recommended to women: “even if he’s in a hurry he can answer a question. If you feel that there is something that’s very important for you to learn, you, as a patient, have a right.” Faye went on to suggest more flexibility when it comes to health promotion and lifestyle intervention:
I think that [a] very high proportion of people in general, when they’re diagnosed with a certain kind of illness, then they just accept that there isn’t anything that they can do about it. So I think definitely education, empowering people with knowledge of how they can manage their well-being. I think that’s a crucial factor in changing diabetes among not just Aboriginal communities, but all communities.