16th Annual Canadian Diabetes Association / CSEM Professional Conference & Annual Meetings Montreal, Quebec October 17-19, 2013

1. The Experiences of Diabetes in Pregnancy among First Nations Women
in Alberta; and the Contributors to a Healthy Pregnancy
Richard T. Oster, Maria J. Mayan and Ellen L. Toth
INTRODUCTION
University of Alberta
RESULTS
Table 1. Participant characteristics
In the current study we aimed at gaining insight into the dramatic differences in rates
of diabetes in pregnancy, and outcomes of such pregnancies, between Canadian
women of First Nations descent and women of the general population (1-3). Our
purpose was to acquire a deeper understanding in this area from the perspective of
First Nations women with real life experience or diabetes in pregnancy. Qualitative
findings among non-Aboriginal women with gestational diabetes (GDM) (4,5),
including a recent review (6), have been published, and suggest areas in need of
improvement for the health care systems to benefit pregnant women and their
families. However, little is known of the experiences of First Nations women.
This study was part of a larger mixed methods plan aimed at examining diabetes in
pregnancy among Aboriginal women, with the ultimate goal of developing
interventions that can effectively improve care for diabetes in pregnancy. A multiphase
mixed methods research approach is being utilized (7), whereby this study
encompassed the initial qualitative phase.
OBJECTIVE
To use a focused ethnography to understand the experience of diabetes in pregnancy
and what factors contribute to achieving a healthy pregnancy in First Nations women.
METHODS
Sample
Women were recruited via the practices of two physicians, and the allied health
professional members of their diabetes care team, as well as through word of mouth
and a recruitment poster. First Nations (self-reported) adult women (18 years or older)
that had previously had GDM or pregestational diabetes in pregnancy (within five
years) were recruited. All of the participants received care for diabetes in pregnancy
within the same major metropolitan city. Convenience sampling methodology was
utilized. A total of 12 First Nations participants were needed to reach data saturation.
Data Generation
Data were generated over a period of approximately 10 months from May 2012 to
March 2013. Unstructured interviews with participants were carried out at a mutually
selected location. During the interviews, open-ended questions were asked to prompt
unstructured discussion. Interviews were audio recorded and transcribed (verbatim).
Data Analysis
Data were subject to qualitative content analysis using ATLAS.ti for data management
and organization. Data analysis took place concurrently with data collection. Data
collection and analysis ceased on data saturation, when no new information or insight
emerged, and when the categories were well refined and defined. The participants
were invited to a group meeting to hear the results share their views. Each participant
that attended the meeting was provided their transcript for review and the findings
were verified as an accurate portrayal of their collective experiences.
Rigor
Rigor in our study was achieved by adhering to the principles of validity,
generalizability, and reliability (8). Also, throughout the entire research process, a
reflective approach was strived for by keeping a personal journal of thoughts,
emotions, reactions, expectations, assumptions, ‘why’ questions, and so forth.
Ethics
We obtained ethical approval from the Human Research Ethics Board of the
University of Alberta. Participants remained unidentifiable and written informed
consent was obtained. Numerous meetings with interested Aboriginal persons were
undertaken prior to, during, and after data collection. These meetings served to lend
advice and guide the research in a culturally appropriate manner.
Participant
number
Age during
pregnancy
Diabetes in
pregnancy type
1
2
38
33
GDM
GDM
Number of years
between birth and
interview
3
2
3
4
5
6
7
8
9
10
11
12
Average
28
27
32
26
38
30
32
39
36
38
33
Pregestational
GDM
GDM
Pregestational
GDM
GDM
Pregestational
Pregestational
Pregestational
Pregestational
N/A
Total number
Home
of children community type
2
4
5
1
1
1
4
1
2
1
2
3
5
Urban city
Urban city
4
3
6
5
5
2
4
1
3
6
4
Aboriginal
Aboriginal
Aboriginal
Aboriginal
Aboriginal
Urban city
Aboriginal
Aboriginal
Aboriginal
Aboriginal
N/A
Taken together, the experience of diabetes in pregnancy for First Nations women was
“good and bad”, one wrought with struggle but balanced to some degree by positive
lifestyle changes. A loss of control, and at the same time striving to control blood sugar
levels, permeated living with diabetes in pregnancy. For some women, diabetes in
pregnancy offered a chance to take control of their health. The degree to which the
women felt they could control their diabetes and their health strongly influenced whether
the women felt they had had a positive or a negative pregnancy experience. Having a
strong support system including family, healthcare provider, cultural/community, and
internal support, was crucial to whether the women felt they had a healthy pregnancy or
not. Facing diabetes in pregnancy alone resulted in a daunting and challenging
pregnancy. Most women had the necessary resources to manage their diabetes but when
awareness and preceding knowledge of diabetes in pregnancy was lacking, many of the
women felt overwhelmed with information upon diagnosis.
Figure 1. Model of integrated main qualitative findings. “+” denotes increase and ““ denotes decrease.
What is it like to have diabetes in pregnancy?
Challenges: “It was hard”
Positives: “It helped me too”
“Extra stress”
“Extra work”
“Inconvenient”
“Problematic”
“Fear”
“Scared for the baby more than
for myself”
“Many different emotions”
“It was a real eye-opener”
“It made me take care of myself
better and eat healthier”
“Now I know and I can show my
kids”
“Ever since then me and my kids
diet has changed”
“I’m more knowledgeable”
Control: “A struggle for
control”
“No getting around it”
“No control over my health”
“Just do as your doctor says”
“I had to take control”
“My blood sugars got out of
control”
What factors might contribute to attaining a healthy pregnancy in women that have
diabetes in pregnancy?
Support: “I didn’t do it alone”
“Family helped”
“My husband tried to understand”
“Healthcare staff was always there”
“Women like to hear like they are
doing something good, not just that
they are harming themselves”
“Health is more holistic”
“An open ear”
“For my baby”
Awareness and Resources:
“There was a lot to learn”
“I didn’t even know what it was”
“A whole lot of information thrown at
me” “I had good access”
“Sometimes you don’t have money
to buy healthy foods”
“Its harder when you are on a
budget”
“I walked a lot”
IMPLICATIONS
As high-risk pregnancies and poor outcomes are more common among First Nations
women regardless of diabetes status, efforts must be made to improve pregnancy care.
First Nations women with diabetes in pregnancy are not likely to benefit from ‘broad
brush’ healthcare, rather providers should look to boost the support systems of these
women, add to their sense of autonomy, and raise awareness of diabetes in pregnancy.
Accordingly, providers should strive for a more patient-centered approach. Such an
approach should allow for mutual exchanging of information, shared power and decision
making, and an even patient-provider partnership where providers actively listen to
patients and learn in-depth about their life circumstances.
Healthcare providers should also work to strengthen women’s support systems beyond
solely that of healthcare provider support. Spouses and other family members should be
engaged and involved as much as possible during clinic visits throughout the pregnancy.
Other cultural and/or community supports should also be included if possible and if
required, such as Elders or close friends. Peer support or cultural support programs are
needed, particularly for those that lack family support. Women’s internal drive to protect
their fetus should also be stoked by providers through positive encouragement rather
than fear inducement.
REFERENCES
1. Dyck R et al. Diabetes Care. 2002;25(3):487-93.
2. Liu SL et al. Diabetic Medicine. 2012;29(8):E180-3.
3. Willows N et al. Am J Human Biol. 2011;23(1):126-31. 4. Evans MK & O'Brien B. Qual Health Res. 2005;15(1):66-81.
5. Persson M et al. Scan J Car Sci. 2009;24(3):454-62.
6. Devsam B et al. Women Birth. 2013;26(2):E69-76.
7. Creswell J, Plano Clark VL. SAGE Publications; 2011. 8.
7. Morse JM et al. Int J Qual Meth. 2002;1(2):13-22.