ORIGINAL ARTICLE
Diabetes nurse educators’ experiences of providing care for women, with gestational diabetes mellitus, from disadvantaged backgrounds Mary Carolan
Aims and objectives. To explore diabetes nurse educators’ experiences of providing care for women, with gestational diabetes mellitus, from disadvantaged backgrounds and to gather information which would assist with the development of an educational programme that would support both women and diabetes educators. Background. Rates of gestational diabetes mellitus have increased dramatically in recent years. This is concerning as gestational diabetes mellitus is linked to poorer pregnancy outcomes including hypertension, stillbirth, and nursery admission. Poorest outcomes occur among disadvantaged women. gestational diabetes mellitus is also associated with maternal type 2 diabetes and with child obesity and type 2 diabetes among offspring. Effective self-management of gestational diabetes mellitus reduces these risks. Diabetes nurse educators provide most education and support for gestational diabetes mellitus self-management. Design. An interpretative phenomenological analysis approach, as espoused by Smith and Osborn (Qualitative Psychology: A Practical Guide to Research Methods, 2008, Sage, London, 51), provided the framework for this study. Methods. The views of six diabetes educators were explored through in-depth interviewing. Interviews were transcribed verbatim and analysed according to steps outlined by Smith and Osborn (Qualitative Psychology: A Practical Guide to Research Methods, 2008, Sage, London, 51). Results. Three themes emerged from the data: (1) working in a suboptimal environment, (2) working to address the difficulties and (3) looking to the future. Throughout, the diabetes nurse educators sought opportunities to connect with women in their care and to make the educational content understandable and meaningful. Conclusions. Low literacy among disadvantaged women has a significant impact on their understanding of gestational diabetes mellitus information. In turn, catering for women with low literacy contributes to increased workloads for diabetes nurse educators, making them vulnerable to burnout. Relevance to clinical practice. There is a need for targeted educational programmes for women with low literacy. Resources should be literacy appropriate, with photographs and simple text, and include culturally appropriate foods and information. This approach should lead to an improvement in the women’s uptake of gestational diabetes mellitus information and may lead to a lessening of the workload burden for diabetes nurse educators. Key words: barriers, disadvantaged, gestational diabetes, self-management Accepted for publication: 14 May 2013
Introduction Gestational diabetes mellitus (GDM), or glucose intolerance first diagnosed in pregnancy (Jovanovic & Pettitt 2001), affects approximately 15,000–20,000 pregnant women in
Author: Mary Carolan, PhD, Associate Professor Midwifery, School of Nursing and Midwifery, Victoria University, St Albans, Vic., Australia
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Australia annually (AIHW 2010). Rates vary from 5–8% in the general population to approximately 15–20% among women from high-risk ethnic populations, such as Polynesian and Asian (AIHW 2010, Carolan et al. 2011). Moreover, GDM rates have increased dramatically in the past
Correspondence: Mary Carolan, Associate Professor Midwifery, School of Nursing and Midwifery,Victoria University, McKechnie St, St Albans, Vic. 3021, Australia. Telephone: +61 3 9919 2585. E-mail: [email protected].
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384, doi: 10.1111/jocn.12421
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two decades (AIHW 2008, Anna et al. 2008) with some estimates indicating an increase of 20–45% in this period (AIHW 2008, Anna et al. 2008). A similar trend of increasing GDM rates is reported in other high-income countries (Ferrara et al. 2004, Joshy & Simmons 2006). Although GDM is generally transient, it is nonetheless associated with poorer maternal and infant outcomes, including hypertensive disorders (Coghill et al. 2011), Caesarean section, macrosomia (infant weight in excess of 4 kg), birth trauma, special care admission (Langer et al. 2005, Yogev & Visser 2009) and stillbirth (Mohsin et al. 2006). Poorer long-term outcomes include obesity and type 2 diabetes as women with prior GDM are 6 times more at risk of developing type 2 diabetes (Bellamy et al. 2009). Higher rates of childhood obesity and type 2 diabetes are also seen among offspring (Fetita et al. 2007). Women from low-income and minority backgrounds are disproportionally at risk of both developing and misunderstanding GDM management (Carolan et al. 2010a,b). Together, these features make the effective management of GDM one of the most urgent health challenges of this era.
Background Optimal glycaemic control during pregnancy has been shown to reduce immediate and long-term effects of GDM for both mother and infant (Cheung 2009, Kim 2010). This level of control requires knowledge and understanding of GDM and commitment to complex self-care behaviours such as blood glucose monitoring, dietary adjustment and exercise to boost metabolism (Reader 2007, Kaveh et al. 2012). Women are most likely to succeed when they feel supported and encouraged (Carolan 2012). Diabetes nurse educators play an important role in the education and support of women with GDM (Simmons et al. 2001, Pagano et al. 2006) and tend to provide much of the dayto-day care and practical assistance. To date, most studies of GDM management have focused on treatment modalities (Cheung 2009, Nolan 2010, Buchanan et al. 2012) rather than on understanding the factors that impact on successful GDM self-management. There is also little emphasis on empowering and equipping women to take on the tasks of GDM self-management. A number of studies report on particular educational interventions (Hoppichler & Lechleitner 2001, Mendelson et al. 2008, Perichart-Perera et al. 2009, Balas-Nakash et al. 2010, Kaveh et al. 2012), with mixed results. PerichartPerera et al. (2009), for example, reported an improvement in outcomes, such as hypertension, hospitalisation and stillbirth, while Balas-Nakash et al. (2010) indicated little or © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
Providing care for women with GDM, from disadvantaged backgrounds
no change. The most successful programmes appear to be those adapted to the women’s cultural backgrounds (Hoppichler & Lechleitner 2001, Mendelson et al. 2008). Overall, it is clear that the provision of meaningful GDM education and support is an urgent challenge for the future and this is especially the case where disadvantage complicates GDM (Link & McKinlay 2009). Increasing GDM rates and the likely adoption of more stringent International Association of Diabetes and Pregnancy Study Group (IADPSG) diagnostic criteria in the near future (Moses et al. 2011) add to the urgency. Using the IADPSG criteria, GDM rates are projected to more than double (Karatodorova et al. 2011). To date, the experiences and perceptions of diabetes nurse educators have received little attention. This is a significant gap as diabetes nurse educators have repeated exposure to women with GDM and their experiences and perceptions are likely to provide insight into the barriers women face when self-managing their GDM. These insights are important to the development of meaningful supportive programmes. This study builds on earlier research evaluating knowledge and attitudes towards GDM among high-risk women (from disadvantaged and multi-ethnic backgrounds) with GDM (blinded for review). The researcher is a nurse and midwife with a well-defined interest in GDM, and this project is part of a continuous effort to improve educational outcomes for women with gestational diabetes in the western region of Melbourne. The study sought to explore the experiences of diabetes nurse educators in this area. Information gathered from the study was intended to contribute to the development of a comprehensive educational and self-management programme, which would provide support for high-risk women with GDM and which would complement existing educational resources.
Methods This study was guided by the principles of interpretative phenomenological analysis (IPA), as espoused by Smith and Osborn (2008). The IPA approach aims to explore the ways in which individuals ‘make sense of their personal and social world’ (Smith & Osborn 2008, p. 53). There is a particular emphasis on the individual’s ‘personal experience’ and ‘perceptions of an event’ (Smith & Osborn 2008, p. 53) and a Heideggerian belief that it is only possible to interpret an event from ‘one’s own lived experience’ (Walters 1994, p. 794). IPA presupposes a connection between an individual’s thoughts and their narration of events. Access to the participant’s experience and perceptions thus allows the researcher
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deeper insight into the phenomenon under review. This examination of the individual’s lifeworld is most commonly achieved through in-depth interviewing (Smith & Osborn 2008), and this is the approach used in the current study. Interpretative phenomenological analysis is linked intellectually to Heidegger’s hermeneutic phenomenology as is underpinned by ontological notions of being in the world rather than being of the world (Ray 1994). In this regard, being in the world refers to the way in which humans behave in the world and how they make sense of events (Dowling 2007, Smith & Osborn 2008). There is an overall emphasis on the interpretation of experience rather than description alone, and this is a major point of difference between IPA and Husserl’s phenomenology (Dowling 2007, Bradbury-Jones et al. 2009). In IPA, the researcher is a part of the sense-making endeavour and the researcher’s prior knowledge is considered a useful feature, and for this reason, bracketing of prior knowledge is not required (Bradbury-Jones et al. 2009). The IPA approach was considered a particularly useful framework for exploring the complex personal experiences and perceptions of diabetes nurse educators who were caring for high-risk women with GDM.
Participants Participants included six diabetes nurse educators, who were employed as part of a multidisciplinary team providing diabetes care and management for women with gestational diabetes. The diabetes care coordinator assisted with the distribution of information and recruitment of participants for the study. Essential inclusion criteria included the following: credentialed diabetes educator, significant experience (more than 1 year) of providing care for women with GDM and employed in the participating institution. The study was approved by the Hospital Ethics Committee, and written consent was obtained prior to interview. Pseudonyms were used to ensure participants’ anonymity.
The setting Diabetes educators in this health service cater for a socially disadvantaged and multi-ethnic population, wherein a large number of residents are unemployed and living in supported or assisted housing (ABS 2006a). Approximately, 31% of the population have been born overseas and more than 25% come from nonEnglish-speaking backgrounds (DoH 2009). Rates of obesity are higher than average and as many as 29% of adults are overweight and up to 16% are obese (DoH 2008), which is higher than average for
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city dwellers in Australia (AIHW 2010). Women in this area are more likely to develop GDM compared with other areas of Australia (DoH 2008), and rates of GDM are 10–14% compared with approximately 5% nationally (ABS 2006b). These higher rates most likely relate to the prevalence of risk factors in the population, including low income, poor diet, obesity and ethnic minority status (Ben Haroush et al. 2006, Anna et al. 2008).
Data collection and analysis In-depth interviews were conducted with each participant. All participants were asked to choose a time and location for interview that suited them, and all elected to be interviewed at their workplace. Interviews lasted from 45–60 minutes and were audio-recorded. An interview guide was used to loosely guide the conversation, although participants were free to speak about their experiences. Interviews were transcribed verbatim. Questions guiding the interview included: 1 Can you tell me about your personal experience of providing care for women with GDM in this area? 2 What are your thoughts about the factors that make it easy for the women to self-manage their GDM? 3 What are your thoughts about the factors that make it difficult for the women to self-manage their GDM? 4 What do you think would make it better? Data analysis involved what Smith and Osborn describe as the ‘an interpretative relationship with the transcript’ (2008, p. 66). This was achieved through the following steps: 1 Sustained engagement with the text, including: i Reading and rereading transcripts. ii Comments and memos written in the margin of each transcript. 2 Searching for themes in the text, including: i Returning to transcripts and composing a list of emerging themes. ii Themes were broad to allow connections within and across transcripts. 3 Producing a table of themes: i Themes listed in the order in which they emerged. 4 Searching for connections between themes: i Themes were clustered in groups. ii Number of themes reduced. iii A colleague assisted by independently drawing up a list of themes. iv Discussion of themes until agreement was reached. 5 Returning to the data with the themes: i Themes were returned to the data to check for fit. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
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Measures of quality Data saturation, which refers to the situation in qualitative research when few or no new data are being generated during interviews (Padgett 2008), is often used as a measure of quality in qualitative studies. However, it is not considered central to the phenomenological approach where the emphasis is more on capturing the full breadth of experience (Smith & Osborn 2008). Nonetheless, data saturation was evident from the 4th interview in this study, which is earlier than usual (Carpenter & Suto 2008) and may reflect the homogeneity of study participants (Liamputtong 2009). Rigour refers to the quality of the research conducted (Liamputtong 2009), and in this study, rigour was used to guide evaluation. Two measures were used: credibility and reliability. In the first instance, credibility was addressed by the purposive selection of participants for their unique knowledge and experience in providing care for disadvantaged women with GDM. This strategy of careful selection of participants has been described in the literature as improving the credibility of qualitative research and ensuring that the research correctly and authentically captures relevant data (Carpenter & Suto 2008, Liamputtong 2009). Lincoln and Guba (1985) go one step further and describe this measure as the ‘single most crucial technique for establishing credibility’ (1985, p. 239). Reliability of analysis was ensured by the provision of independent analysis, as indicated by step 4 of the analytic steps: 1 A colleague assisted by independently drawing up a list of themes. Validity of the data was not tested as this concept is more usually associated with quantitative enquiry. However, the parallel notion ‘transferability’ was considered and refers to the transfer of findings to other similar populations (Miles & Huberman 1994). These authors consider that the results of carefully conducted qualitative studies are transferable to other similar populations, and in this way, the results of this study may be transferable to diabetes educators in other public hospitals in Victoria.
Providing care for women with GDM, from disadvantaged backgrounds
Three themes emerged through analysis and researcher interpretation. The first theme, adapting to the new realities of the health system, is focused on the challenges participants experienced in their role of providing education and support to high-risk women with GDM and is in line with dwindling health resources and increasing incidence of GDM. The second theme, connecting with women for a better outcome, centres on understanding the difficulties women face in comprehending and taking on the tasks of GDM self-management and the participants’ responses to those challenges. The final theme looking to the future is focused on making the most of available resources into the future.
Adapting to the new realities of the health system Participants identified a number of challenges in their work environment. Concerns included limited resources at a time of high demand for services. Additionally, the hospital had recently shifted to group educational sessions in a bid to cope with increasing GDM rates in the area. The new educational approach involved a single 90-minute session. This session overviewed gestational diabetes and requirements for self-management. Following the educational session, women commenced GDM self-management and returned to the clinic one week later, when decisions about ongoing GDM management were made based on the woman’s blood glucose levels. At the time of data collection, participants were still struggling with the day-to-day realities of providing education in this new format. This situation was compounded by a number of factors, such as administrative difficulties with room allocation, high numbers of women with limited literacy and/ or English language skills and limited opportunities for staff to cater for the individual. Susan and Margaret explain: We have to come over into this building to do the sessions because there’s no room (at the clinic)… I had a woman on Wednesday that had hip problems… by the time she’d walked a short way she was crying… So that’s an issue and, in fact, we often have to have a toilet stop on the way…it all takes away from the time…you might have … three lots of interpreters chatting away (at the ses-
Results Participants were all registered general nurses who had completed an accredited graduate certificate course of study in diabetes education and care (ADEA 2007) and who were employed at the hospital as diabetes educators for more than a year. Participants had a broad range of nursing and diabetes educational experience and had worked with the health service from 3–23 years.
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
sion)…. (Susan) … you know for us it’s very hard to cater for the different learning styles in a group environment. (Margaret)
Group sessions tended to be very comprehensive, and participants generally considered the session to be overloaded with information. This feature made it difficult for both the diabetes educator and pregnant women to get through the material. Educators were aware that women
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sometimes retained very little information from the educational session. Emily highlights some of the difficulties: quite a bit of time is devoted to paperwork, paying for the machine… giving the receipt.… not much of the session is devoted to just a clear concept of you have gestational diabetes and this is what you have to do now…. And the couple today that I was contacted about had no idea why they were there. She had no idea she was (diagnosed with GDM)… I had to re-explain gestational diabetes, print off her results…reassure her… basically give her (all the information again)… they’d sat through the whole session without retaining any piece of information. (Emily)
… We do have our own handout but there’s a perception that we shouldn’t be giving them food education ‘cause that’s the dieticians job. … (Emily)
Nonetheless, despite the drawbacks and concerns about quality service provision, diabetes educators in this study experienced their work as rewarding and challenging, at the same time as being stressful. Katherine sums it up as follows: … it is a rewarding job but it can, it throws up challenges and it’s never dull and it’s always busy and it’s, the women themselves are lovely on the whole … it’s all the usual politics and the changes
Participants identified limited and overstretched resources as contributing to a stressful work environment. Burgeoning rates of GDM in the community added to this dilemma, and often, participants were forced to provide rushed services. In the following exemplars, Katherine discusses staffing levels, while Susan describes feeling rushed and stressed:
that stresses you (and) it affects the quality of education. And when
… We have the equivalent of six (educators) and we look after
The second theme, working to address the difficulties, explores the way in which participants worked within the limitations of the work environment. This theme centres on understanding the factors that impact on the women’s ability and motivation to self-manage their GDM. It also involves finding ways to connect with and support women with pertinent information and advice. Difficulties identified by participants include primarily low socio-economic status, low levels of education and literacy, poor dietary habits and cultural mores and beliefs. Some examples are given as follows:
three hospitals inpatient, outpatients and community and on the spot. … we certainly need more educators. (Katherine) … sometimes you get there and you could have been running because you’ve been to emergency … you might not have had a chance to have a drink or anything. So you’re trying really … its quite stressful. (Susan)
This situation of limited and rushed services led to some frustration and stress for participants, most of whom preferred to deliver individualised advice and education that were consistent with the woman’s background and existing diet. Most were concerned with the effect of such a rushed service, as Susan and Emily describe: In some groups you walk away and I feel quite exhausted and quite stressed … you’ve got children running around and interpreters … you think to yourself, what have these women taken in…. (Susan) we just need to spend more… more tailored time with them… telling isn’t teaching and we do a lot of telling at high speed…it’s just like the air hostess spiel on the plane and I just don’t think the women… it’s just going over their heads. (Emily)
Other difficulties included attitudes to diabetes self-management among the high-risk and poorly educated clientele the participants catered for and professional boundaries with other health professionals in the multidisciplinary healthcare team. These circumstances contributed to a sense of fatigue and disillusionment, as Katherine and Emily explain:
you’re expected to give a high quantity of education, sometimes you can forget the finesse…. (Katherine)
Connecting with women for a better outcome
But the low income, yes it is a big problem… because if you were to buy breast fillet (chicken), skin off (healthy choice), you’re going to pay more…. (Prani) Some of the women are not literate in their own language. You can’t make the assumption I think of just translating something into another language. (Emily) Oh we have some ladies who have M’Donalds for breakfast, for lunch and for dinner. That’s their staple diet…. some only eat once a day. And we presume that they eat three meals, Western style foods … They don’t. (Margaret) Culturally most of the women that we’re seeing are from maledominated societies…so they’ve got to do what their husband wants to do first. (Prani) A lot of cultural backgrounds, big baby is a healthy baby and if you gain a lot of weight when you’re pregnant you’re doing really well. (Margaret)
Do you get this?… They get connected to an insulin pump and go
They’re taught that drinking coconut milk and cooking with ghee
to McDonalds to celebrate. Oh what’s the point?…. (Katherine)
is going to make the baby fairer skinned. (Margaret)
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© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
Original article And walking… you know culturally… a lot of women think exercise is dangerous for the baby…. (Dorothy)
This combination of disadvantage, low literacy and language barriers and entrenched poor dietary habits meant that women had significant difficulty understanding the changes required of them. Participants, in turn, understood that women needed time to think about and to comprehend the changes. They also considered that the current format did not entirely meet the women’s needs. Susan and Emily explain:
Providing care for women with GDM, from disadvantaged backgrounds
Participants were unanimously careful not to frighten women unnecessarily and instead concentrated on delivering positive messages and positive re-enforcement when women met their glycaemic targets. At this stage, there was an emphasis on protecting the unborn baby from the effects of hyperglycaemia and on protecting both mother and baby from developing type 2 diabetes at a later stage. Susan explains: … if they make these changes and keep them up … keeping active, healthy eating… they will delay or prevent type 2 diabetes … children will see that healthy eating and activity, so that they lessen the impact on both of them… And an awful lot of babies are born healthy and
I think they need that time to learn without any distractions. I
there’s no problems [sic]. So I try and keep the positive aspects. (Susan)
think maximum six (in a group)… maximum of one interpreter but I know that’s unrealistic…once you’ve got a couple…it can be very disruptive to those sitting nearby, trying to concentrate on the diabetes educator. … (Susan) Some days we don’t have audio visual. The dieticians come … and I have noticed …that when we’re going off the piece of paper … women disengage. They look at their nails, they look at their phone, they look at the ceiling. (Emily)
In response to these difficulties, the diabetes educators looked for ways to relate to the women and to make the GDM information and guidelines accessible and meaningful in the context of the women’s lives and pre-existing diets. The main strategies employed were engaging with the women, simplifying and tailoring the information, emphasising the positive features and advising the women on dietary changes. Although the group educational approach was not considered ideal, each of the participants had developed ways of engaging the women. Katherine explains: … it’s more difficult in a group to hook them all in… than to explain on a one-on-one… You try and engage them and encourage them to do the monitoring and why you’re wanting them to do it, why we get so fussed about it…. (Katherine)
In this study, participants advised the women on immediate dietary and exercise changes they could make and possible food substitutions. They also worked with women to encourage them to experiment with food, within the dietary guidelines. The aim was to enable food choices best suited to their lives and social circumstances. Dorothy and Katherine describe their approaches: I’d ask them … tell me what you typically have at breakfast, snacks, lunch, dinner, supper… and see if we can pick items out of that that she can still have to keep … so she can keep it normal as possible … having a little bit less of one thing and a bit more of the other …. (Dorothy) … I’ve had women go and get basmati at the Indian shop and that’s expensive. Aldi (local chain) sell a version as well that might be better if they’re Vietnamese because …it smells less …or even mix in half jasmine. (Katherine)
Other strategies included tips to help the women fit the various requirements of GDM self-management into their already busy lifestyles and offering advice on how to boost their metabolism by increasing incidental exercise. Katherine and Dorothy explain:
Each of the participants recognised the need to use plain and simple language, in a bid to be understood by all women, irrespective of their literacy and comprehension level. Ideally, the information should be tailored to the individual woman, whenever possible. Margaret and Prani describe their approaches:
I know it’s going to be hard with the kids, can you, have your
… making that simple…really simple language; forget about our
You also have to respect what’s been there for generations and you
For Katherine, it was also important that the changes expected of women were not minimised and that once successful, the diabetes educator recognised and acknowledged the woman’s efforts.
can’t expect a woman to sit in one lecture and suddenly … her
But after they’ve made the massive change… we forget to reward
entire heritage and cultural belief … because you’ve told her
them. Congratulate them for being able to do all that they’ve done.
today’s the day it all ends. (Margaret)
(Katherine)
medical terminology … go as simple as you would explain to a child. (Prani)
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blood sugar machine next to your bed, so you do it the minute, as you’re getting out of bed. (Katherine) Little things like putting the remote control out of reach, parking a little bit further back in the car park when you go shopping, these little things will really help. (Dorothy)
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Looking to the future In the final theme, looking to the future, participants explored what needed to be done to make the most of existing resources and to prepare for likely increasing GDM rates locally. There were four subthemes: getting the most out of sessions, demonstrating rather than describing, developing opportunities for follow-up and promoting greater awareness of GDM at community level. In terms of getting the most out of sessions, participants considered ways to devote greater time within the educational sessions to teaching about GDM and self-management rather than attending to administrative details. This would involve greater preparation for the women, such as prereading and purchasing of their glucometer prior to attending the session. The end result would be a freeing up of more time for education. Emily explains: More pre-reading with them like you do with adult education… some pre-information mailed out … (give them) a clear idea of why they’re coming… Buy your meter at the cashier and bring the receipt and the meter…that saves time in the session…. (Emily)
Participants were keen to address difficulties such as low literacy by demonstrating and providing concrete examples rather than simply describing the changes women were required to make. This would involve demonstrating portion sizes for foods, such as protein and carbohydrates, and providing samples of foods from the recommended food list to enable women to identify foods to purchase. Margaret and Dorothy explain: I have a little bowl that I show… look this is a serve of rice. … And pasta, pasta at home might be the big serving bowl full of pasta. Whereas we’re wanting them to have a third of a cup cooked…. (Margaret) … I’ve often thought we should be bringing in the right breads in. Different choice of bread… we should have food on the table. (Dorothy)
For most participants, the visual representation of food was considered an important means of addressing issues of literacy and poor comprehension. Margaret explains:
women to return and ask questions and seek clarification once they had some experience of self-managing their GDM. Participants agreed that follow-up was an important part of GDM education. However, they were less certain as to the form it should take. Opinions varied from telephone follow-up to repeat educational sessions: I’d love to see them come back in a week. Before they are on insulin, come back with their blood sugars, with all their questions. I tried this food, I tried that, look I’m still a bit high. I’d like to see less of them going on insulin. (Dorothy) Another way that is, I think would be phone calls… And having the time to speak to them one-on-one, I get a lot of feedback…And those things; cutting down the rice and don’t use coconut cream in your cooking…. (Prani)
In addition to being divided in the best approach to follow up, participants were also divided in terms of how much time to allow the women to ‘get it right’. Suggestions of giving the women an additional week to work it out were countered against the urgency of the epigenetics argument, as Dorothy and Katherine comment: … the medical thinking is you’ve got to protect that baby, …Just another week, I think we’d really decrease our insulin usage… they’re not given enough time. (Dorothy) They have to do it immediately because I mean we know that the epigenetics is working. (Katherine)
In the final subtheme, participants were concerned with promoting greater awareness of GDM among pregnant women and at community level. This included greater general understanding of the condition and risk factors such as high body mass index (BMI) and family history of type 2 diabetes. It also included earlier commencement of antenatal education for women. Prani and Emily had this to say: They might say well why me? But you would need to have something which says if you have a history of diabetes you’re at risk. If you come from certain areas, if you had a large baby in your last
… one pictures speaks a thousand words. If they could see a bowl
pregnancy…. Actually in schools today I think gestational diabetes
of rice …And what it should look like, that’s far more meaningful
should be talked about…. (Prani)
than an entire paragraph written about the rice in the bowl and how you cooked it and the variety of rice and a measure of carbohydrate. (Margaret)
Participants unanimously agreed that it was important to develop opportunities for follow-up with the women. This was considered critical in terms of re-enforcing the information already given and in offering a second opportunity for
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And also I really think that education should start at 16 weeks pregnant instead of 26. Even that first antenatal visit. (Emily)
Discussion The overall intention of this study was to gather information, which would later inform the development of an educational © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
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and self-management programme for women in this area, and this aim has been achieved. Nonetheless, the sample size is small, which may be viewed as a limitation although it is consistent with the phenomenological approach where participant numbers range from 6–12 (Morse 1994). Moreover, findings cannot be generalised to the wider population as the phenomenological approach focuses on in-depth understanding of a phenomenon (Miles & Huberman 1994). Although generalisation is not possible, some parallels may present and results may be transferable to other groups of diabetes nurse educators providing care for similar populations of women (Miles & Huberman 1994). This is the first study, to our knowledge, that has explored the experiences and perceptions of diabetes nurse educators caring for high-risk women. It offers insights into the experience of providing GDM education for this group of women and the difficulties the women experience in comprehending and successfully managing their GDM. The study has also highlighted strategies used by the diabetes educators to engage women and to provide meaningful services. Difficulties encountered included overstretched resources and the challenge of providing information that was meaningful for the diverse group of women at the same time as catering for increasing numbers of women with GDM. As a result, participants described feeling rushed and stressed as they struggled with increasing workload. Although the literature on diabetes educators is insufficient for comparison with this finding, comparison with nursing research concurs with our findings and indicates a strong link between work overload and stress (Jourdain & Ch^enevert 2010, Moustaka & Constantinidis 2010). The nature of the diabetes educator role in providing services for pregnant women may also have contributed to the stress participants in this study felt. Most described a sense of urgency in achieving GDM management goals, and Persson et al. (2011) similarly found that Swedish midwives felt pressure and conflict as GDM educators. More generally, there is also consensus in the literature that meeting glycaemic targets is crucial to protect the developing foetus (Cheung 2009, Yogev & Visser 2009). Difficulties for the diabetes educators, in this study, were compounded by the high-risk nature of their clients, including low literacy and poor English language skills. Many women had poor dietary habits, and a large percentage had difficulty accessing and comprehending educational material. Similar findings of poor diet (Fowles et al. 2011, Paul et al. 2013) and low literacy as a barrier to information access have been described in other studies of pregnant women from disadvantaged backgrounds (Shieh et al. 2009, Krans & Chang 2012). Although the literature on gestational diabetes is too sparse for comparison, such pop© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
Providing care for women with GDM, from disadvantaged backgrounds
ulation characteristics are associated with poorer comprehension and uptake of diabetes self-management among individuals with type 2 diabetes (Thackeray et al. 2004, Bains & Egede 2011). Cultural beliefs about high-calorie foods, such as ghee (clarified butter), and concerns about undertaking exercise in pregnancy presented challenges for participants in this study. This finding is echoed in other studies, where a combination of cultural beliefs and taboos hinder adherence to GDM self-management (Bandyopadhyay et al. 2011, Hirst et al. 2012). Hirst et al. (2012), for example, who examined beliefs about GDM among Vietnamese women, found they were confused by advice to reduce carbohydrate and complained of being ‘starving’. Indian women in Bandyopadhyay et al.’s (2011) study also experienced difficulty self-managing their GDM due to different food customs and attitudes to exercise in pregnancy. Participants in this study worked within the limitations of the healthcare system and employed a number of strategies to make information accessible and meaningful to women with GDM. The most important feature of this approach was engaging with women and although engagement is not specifically mentioned in studies of GDM, it resonates generally with care for pregnant women, where there is an emphasis on relationship building and women-centred care (Page 2003, Lundgren & Berg 2007). The second strategy was to tailor the information to the context of the woman’s life, socially and culturally. This approach involved modifying and making substitutions within the existing diet and addressing cultural mores such as a reluctance to exercise. Similar approaches have been found in a small number of intervention studies (Hoppichler & Lechleitner 2001, Mendelson et al. 2008). Hoppichler and Lechleitner (2001), for example, trialled an intervention among Turkish women in Austria, using individually adapted and repeated instructions with the help of trained translators. This approach resulted in improved outcomes such as normal infant birthweight. Participants in the current study stressed the importance of literacy-appropriate information and aimed to promote understanding through the use of simple language, demonstrating portion sizes and reinforcing messages. Most felt the use of pictures/photographs would improve comprehension. Although this concept is not well explored in the GDM literature, literacy-appropriate approaches have been trialled for type 2 diabetes populations (Wallace et al. 2009, Bains & Egede 2011, Hill-Briggs et al. 2011). These studies have reported improved outcomes, such as behavioural changes (Wallace et al. 2009), improved diabetes knowledge (Bains & Egede 2011) and greater problemsolving ability (Hill-Briggs et al. 2011).
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Conclusions In conclusion, the educational role of diabetes nurse educators is very important as they provide most of the dayto-day education and support for women with GDM. This study has highlighted the difficult and stressful nature of the diabetes educator’s role in this area and the limited resources available to assist them. Low literacy among disadvantaged women has a significant impact on their understanding of GDM information. In turn, addressing issues of low literacy increases the workloads of diabetes nurse educators, leaving them rushed and stressed. Study findings have two main implications. First, work overload renders diabetes nurse educators vulnerable to burnout, and they may require support to manage their increasing workloads. At the same time, women with GDM are required to master the tasks of diabetes self-management, in a very short time, to reduce the risk of hyperglycaemia to the foetus. Both of these features lend a certain urgency to the development of the educational programme proposed here.
Relevance to clinical practice Based on insights gained in the study, the educational programme will be developed to address issues of low literacy. It should include minimal text, in plain and simple language supplemented with photographs to illustrate key
concepts. Culturally appropriate food examples must be included for the main ethnic groups in the region. This carefully targeted approach may result in greater comprehension of GDM treatment principles and may ultimately facilitate more successful GDM self-management. In turn, more successful GDM self-management may reduce the risk of serious pregnancy complication and infant morbidity in this area. It may also relieve some of the burden described by the diabetes nurse educators in this study.
Acknowledgements Many thanks to Ms Gina Kruger for her assistance with data analysis.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Funding This research was funded by a small grant from the Ian Potter Foundation, Australia.
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Diabetes nurse educators’ experiences of providing care for women, with gestational diabetes mellitus, from disadvantaged backgrounds Mary Carolan
Aims and objectives. To explore diabetes nurse educators’ experiences of providing care for women, with gestational diabetes mellitus, from disadvantaged backgrounds and to gather information which would assist with the development of an educational programme that would support both women and diabetes educators. Background. Rates of gestational diabetes mellitus have increased dramatically in recent years. This is concerning as gestational diabetes mellitus is linked to poorer pregnancy outcomes including hypertension, stillbirth, and nursery admission. Poorest outcomes occur among disadvantaged women. gestational diabetes mellitus is also associated with maternal type 2 diabetes and with child obesity and type 2 diabetes among offspring. Effective self-management of gestational diabetes mellitus reduces these risks. Diabetes nurse educators provide most education and support for gestational diabetes mellitus self-management. Design. An interpretative phenomenological analysis approach, as espoused by Smith and Osborn (Qualitative Psychology: A Practical Guide to Research Methods, 2008, Sage, London, 51), provided the framework for this study. Methods. The views of six diabetes educators were explored through in-depth interviewing. Interviews were transcribed verbatim and analysed according to steps outlined by Smith and Osborn (Qualitative Psychology: A Practical Guide to Research Methods, 2008, Sage, London, 51). Results. Three themes emerged from the data: (1) working in a suboptimal environment, (2) working to address the difficulties and (3) looking to the future. Throughout, the diabetes nurse educators sought opportunities to connect with women in their care and to make the educational content understandable and meaningful. Conclusions. Low literacy among disadvantaged women has a significant impact on their understanding of gestational diabetes mellitus information. In turn, catering for women with low literacy contributes to increased workloads for diabetes nurse educators, making them vulnerable to burnout. Relevance to clinical practice. There is a need for targeted educational programmes for women with low literacy. Resources should be literacy appropriate, with photographs and simple text, and include culturally appropriate foods and information. This approach should lead to an improvement in the women’s uptake of gestational diabetes mellitus information and may lead to a lessening of the workload burden for diabetes nurse educators. Key words: barriers, disadvantaged, gestational diabetes, self-management Accepted for publication: 14 May 2013
Introduction Gestational diabetes mellitus (GDM), or glucose intolerance first diagnosed in pregnancy (Jovanovic & Pettitt 2001), affects approximately 15,000–20,000 pregnant women in
Author: Mary Carolan, PhD, Associate Professor Midwifery, School of Nursing and Midwifery, Victoria University, St Albans, Vic., Australia
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Australia annually (AIHW 2010). Rates vary from 5–8% in the general population to approximately 15–20% among women from high-risk ethnic populations, such as Polynesian and Asian (AIHW 2010, Carolan et al. 2011). Moreover, GDM rates have increased dramatically in the past
Correspondence: Mary Carolan, Associate Professor Midwifery, School of Nursing and Midwifery,Victoria University, McKechnie St, St Albans, Vic. 3021, Australia. Telephone: +61 3 9919 2585. E-mail: [email protected].
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384, doi: 10.1111/jocn.12421
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two decades (AIHW 2008, Anna et al. 2008) with some estimates indicating an increase of 20–45% in this period (AIHW 2008, Anna et al. 2008). A similar trend of increasing GDM rates is reported in other high-income countries (Ferrara et al. 2004, Joshy & Simmons 2006). Although GDM is generally transient, it is nonetheless associated with poorer maternal and infant outcomes, including hypertensive disorders (Coghill et al. 2011), Caesarean section, macrosomia (infant weight in excess of 4 kg), birth trauma, special care admission (Langer et al. 2005, Yogev & Visser 2009) and stillbirth (Mohsin et al. 2006). Poorer long-term outcomes include obesity and type 2 diabetes as women with prior GDM are 6 times more at risk of developing type 2 diabetes (Bellamy et al. 2009). Higher rates of childhood obesity and type 2 diabetes are also seen among offspring (Fetita et al. 2007). Women from low-income and minority backgrounds are disproportionally at risk of both developing and misunderstanding GDM management (Carolan et al. 2010a,b). Together, these features make the effective management of GDM one of the most urgent health challenges of this era.
Background Optimal glycaemic control during pregnancy has been shown to reduce immediate and long-term effects of GDM for both mother and infant (Cheung 2009, Kim 2010). This level of control requires knowledge and understanding of GDM and commitment to complex self-care behaviours such as blood glucose monitoring, dietary adjustment and exercise to boost metabolism (Reader 2007, Kaveh et al. 2012). Women are most likely to succeed when they feel supported and encouraged (Carolan 2012). Diabetes nurse educators play an important role in the education and support of women with GDM (Simmons et al. 2001, Pagano et al. 2006) and tend to provide much of the dayto-day care and practical assistance. To date, most studies of GDM management have focused on treatment modalities (Cheung 2009, Nolan 2010, Buchanan et al. 2012) rather than on understanding the factors that impact on successful GDM self-management. There is also little emphasis on empowering and equipping women to take on the tasks of GDM self-management. A number of studies report on particular educational interventions (Hoppichler & Lechleitner 2001, Mendelson et al. 2008, Perichart-Perera et al. 2009, Balas-Nakash et al. 2010, Kaveh et al. 2012), with mixed results. PerichartPerera et al. (2009), for example, reported an improvement in outcomes, such as hypertension, hospitalisation and stillbirth, while Balas-Nakash et al. (2010) indicated little or © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
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no change. The most successful programmes appear to be those adapted to the women’s cultural backgrounds (Hoppichler & Lechleitner 2001, Mendelson et al. 2008). Overall, it is clear that the provision of meaningful GDM education and support is an urgent challenge for the future and this is especially the case where disadvantage complicates GDM (Link & McKinlay 2009). Increasing GDM rates and the likely adoption of more stringent International Association of Diabetes and Pregnancy Study Group (IADPSG) diagnostic criteria in the near future (Moses et al. 2011) add to the urgency. Using the IADPSG criteria, GDM rates are projected to more than double (Karatodorova et al. 2011). To date, the experiences and perceptions of diabetes nurse educators have received little attention. This is a significant gap as diabetes nurse educators have repeated exposure to women with GDM and their experiences and perceptions are likely to provide insight into the barriers women face when self-managing their GDM. These insights are important to the development of meaningful supportive programmes. This study builds on earlier research evaluating knowledge and attitudes towards GDM among high-risk women (from disadvantaged and multi-ethnic backgrounds) with GDM (blinded for review). The researcher is a nurse and midwife with a well-defined interest in GDM, and this project is part of a continuous effort to improve educational outcomes for women with gestational diabetes in the western region of Melbourne. The study sought to explore the experiences of diabetes nurse educators in this area. Information gathered from the study was intended to contribute to the development of a comprehensive educational and self-management programme, which would provide support for high-risk women with GDM and which would complement existing educational resources.
Methods This study was guided by the principles of interpretative phenomenological analysis (IPA), as espoused by Smith and Osborn (2008). The IPA approach aims to explore the ways in which individuals ‘make sense of their personal and social world’ (Smith & Osborn 2008, p. 53). There is a particular emphasis on the individual’s ‘personal experience’ and ‘perceptions of an event’ (Smith & Osborn 2008, p. 53) and a Heideggerian belief that it is only possible to interpret an event from ‘one’s own lived experience’ (Walters 1994, p. 794). IPA presupposes a connection between an individual’s thoughts and their narration of events. Access to the participant’s experience and perceptions thus allows the researcher
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deeper insight into the phenomenon under review. This examination of the individual’s lifeworld is most commonly achieved through in-depth interviewing (Smith & Osborn 2008), and this is the approach used in the current study. Interpretative phenomenological analysis is linked intellectually to Heidegger’s hermeneutic phenomenology as is underpinned by ontological notions of being in the world rather than being of the world (Ray 1994). In this regard, being in the world refers to the way in which humans behave in the world and how they make sense of events (Dowling 2007, Smith & Osborn 2008). There is an overall emphasis on the interpretation of experience rather than description alone, and this is a major point of difference between IPA and Husserl’s phenomenology (Dowling 2007, Bradbury-Jones et al. 2009). In IPA, the researcher is a part of the sense-making endeavour and the researcher’s prior knowledge is considered a useful feature, and for this reason, bracketing of prior knowledge is not required (Bradbury-Jones et al. 2009). The IPA approach was considered a particularly useful framework for exploring the complex personal experiences and perceptions of diabetes nurse educators who were caring for high-risk women with GDM.
Participants Participants included six diabetes nurse educators, who were employed as part of a multidisciplinary team providing diabetes care and management for women with gestational diabetes. The diabetes care coordinator assisted with the distribution of information and recruitment of participants for the study. Essential inclusion criteria included the following: credentialed diabetes educator, significant experience (more than 1 year) of providing care for women with GDM and employed in the participating institution. The study was approved by the Hospital Ethics Committee, and written consent was obtained prior to interview. Pseudonyms were used to ensure participants’ anonymity.
The setting Diabetes educators in this health service cater for a socially disadvantaged and multi-ethnic population, wherein a large number of residents are unemployed and living in supported or assisted housing (ABS 2006a). Approximately, 31% of the population have been born overseas and more than 25% come from nonEnglish-speaking backgrounds (DoH 2009). Rates of obesity are higher than average and as many as 29% of adults are overweight and up to 16% are obese (DoH 2008), which is higher than average for
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city dwellers in Australia (AIHW 2010). Women in this area are more likely to develop GDM compared with other areas of Australia (DoH 2008), and rates of GDM are 10–14% compared with approximately 5% nationally (ABS 2006b). These higher rates most likely relate to the prevalence of risk factors in the population, including low income, poor diet, obesity and ethnic minority status (Ben Haroush et al. 2006, Anna et al. 2008).
Data collection and analysis In-depth interviews were conducted with each participant. All participants were asked to choose a time and location for interview that suited them, and all elected to be interviewed at their workplace. Interviews lasted from 45–60 minutes and were audio-recorded. An interview guide was used to loosely guide the conversation, although participants were free to speak about their experiences. Interviews were transcribed verbatim. Questions guiding the interview included: 1 Can you tell me about your personal experience of providing care for women with GDM in this area? 2 What are your thoughts about the factors that make it easy for the women to self-manage their GDM? 3 What are your thoughts about the factors that make it difficult for the women to self-manage their GDM? 4 What do you think would make it better? Data analysis involved what Smith and Osborn describe as the ‘an interpretative relationship with the transcript’ (2008, p. 66). This was achieved through the following steps: 1 Sustained engagement with the text, including: i Reading and rereading transcripts. ii Comments and memos written in the margin of each transcript. 2 Searching for themes in the text, including: i Returning to transcripts and composing a list of emerging themes. ii Themes were broad to allow connections within and across transcripts. 3 Producing a table of themes: i Themes listed in the order in which they emerged. 4 Searching for connections between themes: i Themes were clustered in groups. ii Number of themes reduced. iii A colleague assisted by independently drawing up a list of themes. iv Discussion of themes until agreement was reached. 5 Returning to the data with the themes: i Themes were returned to the data to check for fit. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
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Measures of quality Data saturation, which refers to the situation in qualitative research when few or no new data are being generated during interviews (Padgett 2008), is often used as a measure of quality in qualitative studies. However, it is not considered central to the phenomenological approach where the emphasis is more on capturing the full breadth of experience (Smith & Osborn 2008). Nonetheless, data saturation was evident from the 4th interview in this study, which is earlier than usual (Carpenter & Suto 2008) and may reflect the homogeneity of study participants (Liamputtong 2009). Rigour refers to the quality of the research conducted (Liamputtong 2009), and in this study, rigour was used to guide evaluation. Two measures were used: credibility and reliability. In the first instance, credibility was addressed by the purposive selection of participants for their unique knowledge and experience in providing care for disadvantaged women with GDM. This strategy of careful selection of participants has been described in the literature as improving the credibility of qualitative research and ensuring that the research correctly and authentically captures relevant data (Carpenter & Suto 2008, Liamputtong 2009). Lincoln and Guba (1985) go one step further and describe this measure as the ‘single most crucial technique for establishing credibility’ (1985, p. 239). Reliability of analysis was ensured by the provision of independent analysis, as indicated by step 4 of the analytic steps: 1 A colleague assisted by independently drawing up a list of themes. Validity of the data was not tested as this concept is more usually associated with quantitative enquiry. However, the parallel notion ‘transferability’ was considered and refers to the transfer of findings to other similar populations (Miles & Huberman 1994). These authors consider that the results of carefully conducted qualitative studies are transferable to other similar populations, and in this way, the results of this study may be transferable to diabetes educators in other public hospitals in Victoria.
Providing care for women with GDM, from disadvantaged backgrounds
Three themes emerged through analysis and researcher interpretation. The first theme, adapting to the new realities of the health system, is focused on the challenges participants experienced in their role of providing education and support to high-risk women with GDM and is in line with dwindling health resources and increasing incidence of GDM. The second theme, connecting with women for a better outcome, centres on understanding the difficulties women face in comprehending and taking on the tasks of GDM self-management and the participants’ responses to those challenges. The final theme looking to the future is focused on making the most of available resources into the future.
Adapting to the new realities of the health system Participants identified a number of challenges in their work environment. Concerns included limited resources at a time of high demand for services. Additionally, the hospital had recently shifted to group educational sessions in a bid to cope with increasing GDM rates in the area. The new educational approach involved a single 90-minute session. This session overviewed gestational diabetes and requirements for self-management. Following the educational session, women commenced GDM self-management and returned to the clinic one week later, when decisions about ongoing GDM management were made based on the woman’s blood glucose levels. At the time of data collection, participants were still struggling with the day-to-day realities of providing education in this new format. This situation was compounded by a number of factors, such as administrative difficulties with room allocation, high numbers of women with limited literacy and/ or English language skills and limited opportunities for staff to cater for the individual. Susan and Margaret explain: We have to come over into this building to do the sessions because there’s no room (at the clinic)… I had a woman on Wednesday that had hip problems… by the time she’d walked a short way she was crying… So that’s an issue and, in fact, we often have to have a toilet stop on the way…it all takes away from the time…you might have … three lots of interpreters chatting away (at the ses-
Results Participants were all registered general nurses who had completed an accredited graduate certificate course of study in diabetes education and care (ADEA 2007) and who were employed at the hospital as diabetes educators for more than a year. Participants had a broad range of nursing and diabetes educational experience and had worked with the health service from 3–23 years.
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sion)…. (Susan) … you know for us it’s very hard to cater for the different learning styles in a group environment. (Margaret)
Group sessions tended to be very comprehensive, and participants generally considered the session to be overloaded with information. This feature made it difficult for both the diabetes educator and pregnant women to get through the material. Educators were aware that women
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sometimes retained very little information from the educational session. Emily highlights some of the difficulties: quite a bit of time is devoted to paperwork, paying for the machine… giving the receipt.… not much of the session is devoted to just a clear concept of you have gestational diabetes and this is what you have to do now…. And the couple today that I was contacted about had no idea why they were there. She had no idea she was (diagnosed with GDM)… I had to re-explain gestational diabetes, print off her results…reassure her… basically give her (all the information again)… they’d sat through the whole session without retaining any piece of information. (Emily)
… We do have our own handout but there’s a perception that we shouldn’t be giving them food education ‘cause that’s the dieticians job. … (Emily)
Nonetheless, despite the drawbacks and concerns about quality service provision, diabetes educators in this study experienced their work as rewarding and challenging, at the same time as being stressful. Katherine sums it up as follows: … it is a rewarding job but it can, it throws up challenges and it’s never dull and it’s always busy and it’s, the women themselves are lovely on the whole … it’s all the usual politics and the changes
Participants identified limited and overstretched resources as contributing to a stressful work environment. Burgeoning rates of GDM in the community added to this dilemma, and often, participants were forced to provide rushed services. In the following exemplars, Katherine discusses staffing levels, while Susan describes feeling rushed and stressed:
that stresses you (and) it affects the quality of education. And when
… We have the equivalent of six (educators) and we look after
The second theme, working to address the difficulties, explores the way in which participants worked within the limitations of the work environment. This theme centres on understanding the factors that impact on the women’s ability and motivation to self-manage their GDM. It also involves finding ways to connect with and support women with pertinent information and advice. Difficulties identified by participants include primarily low socio-economic status, low levels of education and literacy, poor dietary habits and cultural mores and beliefs. Some examples are given as follows:
three hospitals inpatient, outpatients and community and on the spot. … we certainly need more educators. (Katherine) … sometimes you get there and you could have been running because you’ve been to emergency … you might not have had a chance to have a drink or anything. So you’re trying really … its quite stressful. (Susan)
This situation of limited and rushed services led to some frustration and stress for participants, most of whom preferred to deliver individualised advice and education that were consistent with the woman’s background and existing diet. Most were concerned with the effect of such a rushed service, as Susan and Emily describe: In some groups you walk away and I feel quite exhausted and quite stressed … you’ve got children running around and interpreters … you think to yourself, what have these women taken in…. (Susan) we just need to spend more… more tailored time with them… telling isn’t teaching and we do a lot of telling at high speed…it’s just like the air hostess spiel on the plane and I just don’t think the women… it’s just going over their heads. (Emily)
Other difficulties included attitudes to diabetes self-management among the high-risk and poorly educated clientele the participants catered for and professional boundaries with other health professionals in the multidisciplinary healthcare team. These circumstances contributed to a sense of fatigue and disillusionment, as Katherine and Emily explain:
you’re expected to give a high quantity of education, sometimes you can forget the finesse…. (Katherine)
Connecting with women for a better outcome
But the low income, yes it is a big problem… because if you were to buy breast fillet (chicken), skin off (healthy choice), you’re going to pay more…. (Prani) Some of the women are not literate in their own language. You can’t make the assumption I think of just translating something into another language. (Emily) Oh we have some ladies who have M’Donalds for breakfast, for lunch and for dinner. That’s their staple diet…. some only eat once a day. And we presume that they eat three meals, Western style foods … They don’t. (Margaret) Culturally most of the women that we’re seeing are from maledominated societies…so they’ve got to do what their husband wants to do first. (Prani) A lot of cultural backgrounds, big baby is a healthy baby and if you gain a lot of weight when you’re pregnant you’re doing really well. (Margaret)
Do you get this?… They get connected to an insulin pump and go
They’re taught that drinking coconut milk and cooking with ghee
to McDonalds to celebrate. Oh what’s the point?…. (Katherine)
is going to make the baby fairer skinned. (Margaret)
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Original article And walking… you know culturally… a lot of women think exercise is dangerous for the baby…. (Dorothy)
This combination of disadvantage, low literacy and language barriers and entrenched poor dietary habits meant that women had significant difficulty understanding the changes required of them. Participants, in turn, understood that women needed time to think about and to comprehend the changes. They also considered that the current format did not entirely meet the women’s needs. Susan and Emily explain:
Providing care for women with GDM, from disadvantaged backgrounds
Participants were unanimously careful not to frighten women unnecessarily and instead concentrated on delivering positive messages and positive re-enforcement when women met their glycaemic targets. At this stage, there was an emphasis on protecting the unborn baby from the effects of hyperglycaemia and on protecting both mother and baby from developing type 2 diabetes at a later stage. Susan explains: … if they make these changes and keep them up … keeping active, healthy eating… they will delay or prevent type 2 diabetes … children will see that healthy eating and activity, so that they lessen the impact on both of them… And an awful lot of babies are born healthy and
I think they need that time to learn without any distractions. I
there’s no problems [sic]. So I try and keep the positive aspects. (Susan)
think maximum six (in a group)… maximum of one interpreter but I know that’s unrealistic…once you’ve got a couple…it can be very disruptive to those sitting nearby, trying to concentrate on the diabetes educator. … (Susan) Some days we don’t have audio visual. The dieticians come … and I have noticed …that when we’re going off the piece of paper … women disengage. They look at their nails, they look at their phone, they look at the ceiling. (Emily)
In response to these difficulties, the diabetes educators looked for ways to relate to the women and to make the GDM information and guidelines accessible and meaningful in the context of the women’s lives and pre-existing diets. The main strategies employed were engaging with the women, simplifying and tailoring the information, emphasising the positive features and advising the women on dietary changes. Although the group educational approach was not considered ideal, each of the participants had developed ways of engaging the women. Katherine explains: … it’s more difficult in a group to hook them all in… than to explain on a one-on-one… You try and engage them and encourage them to do the monitoring and why you’re wanting them to do it, why we get so fussed about it…. (Katherine)
In this study, participants advised the women on immediate dietary and exercise changes they could make and possible food substitutions. They also worked with women to encourage them to experiment with food, within the dietary guidelines. The aim was to enable food choices best suited to their lives and social circumstances. Dorothy and Katherine describe their approaches: I’d ask them … tell me what you typically have at breakfast, snacks, lunch, dinner, supper… and see if we can pick items out of that that she can still have to keep … so she can keep it normal as possible … having a little bit less of one thing and a bit more of the other …. (Dorothy) … I’ve had women go and get basmati at the Indian shop and that’s expensive. Aldi (local chain) sell a version as well that might be better if they’re Vietnamese because …it smells less …or even mix in half jasmine. (Katherine)
Other strategies included tips to help the women fit the various requirements of GDM self-management into their already busy lifestyles and offering advice on how to boost their metabolism by increasing incidental exercise. Katherine and Dorothy explain:
Each of the participants recognised the need to use plain and simple language, in a bid to be understood by all women, irrespective of their literacy and comprehension level. Ideally, the information should be tailored to the individual woman, whenever possible. Margaret and Prani describe their approaches:
I know it’s going to be hard with the kids, can you, have your
… making that simple…really simple language; forget about our
You also have to respect what’s been there for generations and you
For Katherine, it was also important that the changes expected of women were not minimised and that once successful, the diabetes educator recognised and acknowledged the woman’s efforts.
can’t expect a woman to sit in one lecture and suddenly … her
But after they’ve made the massive change… we forget to reward
entire heritage and cultural belief … because you’ve told her
them. Congratulate them for being able to do all that they’ve done.
today’s the day it all ends. (Margaret)
(Katherine)
medical terminology … go as simple as you would explain to a child. (Prani)
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blood sugar machine next to your bed, so you do it the minute, as you’re getting out of bed. (Katherine) Little things like putting the remote control out of reach, parking a little bit further back in the car park when you go shopping, these little things will really help. (Dorothy)
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Looking to the future In the final theme, looking to the future, participants explored what needed to be done to make the most of existing resources and to prepare for likely increasing GDM rates locally. There were four subthemes: getting the most out of sessions, demonstrating rather than describing, developing opportunities for follow-up and promoting greater awareness of GDM at community level. In terms of getting the most out of sessions, participants considered ways to devote greater time within the educational sessions to teaching about GDM and self-management rather than attending to administrative details. This would involve greater preparation for the women, such as prereading and purchasing of their glucometer prior to attending the session. The end result would be a freeing up of more time for education. Emily explains: More pre-reading with them like you do with adult education… some pre-information mailed out … (give them) a clear idea of why they’re coming… Buy your meter at the cashier and bring the receipt and the meter…that saves time in the session…. (Emily)
Participants were keen to address difficulties such as low literacy by demonstrating and providing concrete examples rather than simply describing the changes women were required to make. This would involve demonstrating portion sizes for foods, such as protein and carbohydrates, and providing samples of foods from the recommended food list to enable women to identify foods to purchase. Margaret and Dorothy explain: I have a little bowl that I show… look this is a serve of rice. … And pasta, pasta at home might be the big serving bowl full of pasta. Whereas we’re wanting them to have a third of a cup cooked…. (Margaret) … I’ve often thought we should be bringing in the right breads in. Different choice of bread… we should have food on the table. (Dorothy)
For most participants, the visual representation of food was considered an important means of addressing issues of literacy and poor comprehension. Margaret explains:
women to return and ask questions and seek clarification once they had some experience of self-managing their GDM. Participants agreed that follow-up was an important part of GDM education. However, they were less certain as to the form it should take. Opinions varied from telephone follow-up to repeat educational sessions: I’d love to see them come back in a week. Before they are on insulin, come back with their blood sugars, with all their questions. I tried this food, I tried that, look I’m still a bit high. I’d like to see less of them going on insulin. (Dorothy) Another way that is, I think would be phone calls… And having the time to speak to them one-on-one, I get a lot of feedback…And those things; cutting down the rice and don’t use coconut cream in your cooking…. (Prani)
In addition to being divided in the best approach to follow up, participants were also divided in terms of how much time to allow the women to ‘get it right’. Suggestions of giving the women an additional week to work it out were countered against the urgency of the epigenetics argument, as Dorothy and Katherine comment: … the medical thinking is you’ve got to protect that baby, …Just another week, I think we’d really decrease our insulin usage… they’re not given enough time. (Dorothy) They have to do it immediately because I mean we know that the epigenetics is working. (Katherine)
In the final subtheme, participants were concerned with promoting greater awareness of GDM among pregnant women and at community level. This included greater general understanding of the condition and risk factors such as high body mass index (BMI) and family history of type 2 diabetes. It also included earlier commencement of antenatal education for women. Prani and Emily had this to say: They might say well why me? But you would need to have something which says if you have a history of diabetes you’re at risk. If you come from certain areas, if you had a large baby in your last
… one pictures speaks a thousand words. If they could see a bowl
pregnancy…. Actually in schools today I think gestational diabetes
of rice …And what it should look like, that’s far more meaningful
should be talked about…. (Prani)
than an entire paragraph written about the rice in the bowl and how you cooked it and the variety of rice and a measure of carbohydrate. (Margaret)
Participants unanimously agreed that it was important to develop opportunities for follow-up with the women. This was considered critical in terms of re-enforcing the information already given and in offering a second opportunity for
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And also I really think that education should start at 16 weeks pregnant instead of 26. Even that first antenatal visit. (Emily)
Discussion The overall intention of this study was to gather information, which would later inform the development of an educational © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
Original article
and self-management programme for women in this area, and this aim has been achieved. Nonetheless, the sample size is small, which may be viewed as a limitation although it is consistent with the phenomenological approach where participant numbers range from 6–12 (Morse 1994). Moreover, findings cannot be generalised to the wider population as the phenomenological approach focuses on in-depth understanding of a phenomenon (Miles & Huberman 1994). Although generalisation is not possible, some parallels may present and results may be transferable to other groups of diabetes nurse educators providing care for similar populations of women (Miles & Huberman 1994). This is the first study, to our knowledge, that has explored the experiences and perceptions of diabetes nurse educators caring for high-risk women. It offers insights into the experience of providing GDM education for this group of women and the difficulties the women experience in comprehending and successfully managing their GDM. The study has also highlighted strategies used by the diabetes educators to engage women and to provide meaningful services. Difficulties encountered included overstretched resources and the challenge of providing information that was meaningful for the diverse group of women at the same time as catering for increasing numbers of women with GDM. As a result, participants described feeling rushed and stressed as they struggled with increasing workload. Although the literature on diabetes educators is insufficient for comparison with this finding, comparison with nursing research concurs with our findings and indicates a strong link between work overload and stress (Jourdain & Ch^enevert 2010, Moustaka & Constantinidis 2010). The nature of the diabetes educator role in providing services for pregnant women may also have contributed to the stress participants in this study felt. Most described a sense of urgency in achieving GDM management goals, and Persson et al. (2011) similarly found that Swedish midwives felt pressure and conflict as GDM educators. More generally, there is also consensus in the literature that meeting glycaemic targets is crucial to protect the developing foetus (Cheung 2009, Yogev & Visser 2009). Difficulties for the diabetes educators, in this study, were compounded by the high-risk nature of their clients, including low literacy and poor English language skills. Many women had poor dietary habits, and a large percentage had difficulty accessing and comprehending educational material. Similar findings of poor diet (Fowles et al. 2011, Paul et al. 2013) and low literacy as a barrier to information access have been described in other studies of pregnant women from disadvantaged backgrounds (Shieh et al. 2009, Krans & Chang 2012). Although the literature on gestational diabetes is too sparse for comparison, such pop© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 1374–1384
Providing care for women with GDM, from disadvantaged backgrounds
ulation characteristics are associated with poorer comprehension and uptake of diabetes self-management among individuals with type 2 diabetes (Thackeray et al. 2004, Bains & Egede 2011). Cultural beliefs about high-calorie foods, such as ghee (clarified butter), and concerns about undertaking exercise in pregnancy presented challenges for participants in this study. This finding is echoed in other studies, where a combination of cultural beliefs and taboos hinder adherence to GDM self-management (Bandyopadhyay et al. 2011, Hirst et al. 2012). Hirst et al. (2012), for example, who examined beliefs about GDM among Vietnamese women, found they were confused by advice to reduce carbohydrate and complained of being ‘starving’. Indian women in Bandyopadhyay et al.’s (2011) study also experienced difficulty self-managing their GDM due to different food customs and attitudes to exercise in pregnancy. Participants in this study worked within the limitations of the healthcare system and employed a number of strategies to make information accessible and meaningful to women with GDM. The most important feature of this approach was engaging with women and although engagement is not specifically mentioned in studies of GDM, it resonates generally with care for pregnant women, where there is an emphasis on relationship building and women-centred care (Page 2003, Lundgren & Berg 2007). The second strategy was to tailor the information to the context of the woman’s life, socially and culturally. This approach involved modifying and making substitutions within the existing diet and addressing cultural mores such as a reluctance to exercise. Similar approaches have been found in a small number of intervention studies (Hoppichler & Lechleitner 2001, Mendelson et al. 2008). Hoppichler and Lechleitner (2001), for example, trialled an intervention among Turkish women in Austria, using individually adapted and repeated instructions with the help of trained translators. This approach resulted in improved outcomes such as normal infant birthweight. Participants in the current study stressed the importance of literacy-appropriate information and aimed to promote understanding through the use of simple language, demonstrating portion sizes and reinforcing messages. Most felt the use of pictures/photographs would improve comprehension. Although this concept is not well explored in the GDM literature, literacy-appropriate approaches have been trialled for type 2 diabetes populations (Wallace et al. 2009, Bains & Egede 2011, Hill-Briggs et al. 2011). These studies have reported improved outcomes, such as behavioural changes (Wallace et al. 2009), improved diabetes knowledge (Bains & Egede 2011) and greater problemsolving ability (Hill-Briggs et al. 2011).
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Conclusions In conclusion, the educational role of diabetes nurse educators is very important as they provide most of the dayto-day education and support for women with GDM. This study has highlighted the difficult and stressful nature of the diabetes educator’s role in this area and the limited resources available to assist them. Low literacy among disadvantaged women has a significant impact on their understanding of GDM information. In turn, addressing issues of low literacy increases the workloads of diabetes nurse educators, leaving them rushed and stressed. Study findings have two main implications. First, work overload renders diabetes nurse educators vulnerable to burnout, and they may require support to manage their increasing workloads. At the same time, women with GDM are required to master the tasks of diabetes self-management, in a very short time, to reduce the risk of hyperglycaemia to the foetus. Both of these features lend a certain urgency to the development of the educational programme proposed here.
Relevance to clinical practice Based on insights gained in the study, the educational programme will be developed to address issues of low literacy. It should include minimal text, in plain and simple language supplemented with photographs to illustrate key
concepts. Culturally appropriate food examples must be included for the main ethnic groups in the region. This carefully targeted approach may result in greater comprehension of GDM treatment principles and may ultimately facilitate more successful GDM self-management. In turn, more successful GDM self-management may reduce the risk of serious pregnancy complication and infant morbidity in this area. It may also relieve some of the burden described by the diabetes nurse educators in this study.
Acknowledgements Many thanks to Ms Gina Kruger for her assistance with data analysis.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Funding This research was funded by a small grant from the Ian Potter Foundation, Australia.
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