Womenʼs experience of diabetes and diabetes management in pregnancy: A systematic review of qualitative evidence (2012)

Review question/objective The objective of this review is to synthesise the best available evidence on the experience of diabetes and diabetes management among pregnant women, and how these experiences relate to their understanding of their condition and adherence to treatment regimes. Background Pre-existing medical conditions, or medical conditions developing during pregnancy, may have an effect on pregnancy outcome or conversely may be affected by the pregnancy. Generally, convention suggests that good control can assist to mitigate the negative effects. Type 1 and type 2 diabetes (pre-existing medical conditions) and gestational diabetes (a pregnancy related medical condition) are conditions where these negative effects may occur.1 Pre-existing diabetes mellitus can be divided into type 1 - insulin-dependent diabetes mellitus - and type 2 - non-insulin-dependent diabetes mellitus. Gestational diabetes (GDM) is defined as carbohydrate intolerance of variable severity with onset or first recognition during the present pregnancy and therefore can include a subset of women with pre-existing but previously undiagnosed diabetes mellitus.2 Type 1 diabetes mellitus usually presents in childhood or early adulthood and is not associated with increased age or being overweight. Type 2 diabetes mellitus is associated with increased age and weight and is more common in various ethnic groups - in the UK it is more common in Asian, Afro-Caribbean and Middle Eastern immigrants.2 In the USA, it has been shown that Hispanic mothers are more likely to have had diabetes than non-Hispanic White and non-Hispanic Black mothers, with women aged 40-54 years being at highest risk of diabetes during pregnancy while women under 20 years of age are least likely to have diabetes during pregnancy.3 In Australia, Aboriginal and Torres Strait Islanders and mothers born in high-diabetes-risk regions, such as Polynesia, Asia and the Middle East, are shown to have increased rates of both pre-existing diabetes and GDM.4 A similar age related trend to the USA has been observed in Australia where women who gave birth with Type 2 diabetes and those with GDM tended to be older than other women who gave birth.4 An Australian study of women attending obstetric outpatient services in a major obstetric hospital5 reported that 39.3% of women reported at least one ongoing health condition. Diabetes mellitus (including GDM) was reported in 8.7%, with 5.2% of all patients taking antidiabetic medications. These figures are consistent with an Australian government report where it is reported that pre-existing diabetes in pregnancy affected less than 1% of pregnancies, and GDM affected about 5%.4 Pre-existing maternal diabetes with poor blood glucose control is associated with increased rates of congenital malformation. Sacral agenesis, neural tube defects, cardiac defects and skeletal defects are increased compared to the background rate of abnormalities if glycaemic control is poor in the first seven weeks post conception.6 The generally accepted background rate of congenital abnormalities in western countries is 2 to 3% at birth. The increased level of risk of birth defects is directly related to glycated haemoglobin levels (HbA1C). Where HbA1C levels are less than 8%, the congenital malformation rate is about 5%; if HbA1C is over 10%, that rate increases to about 25%. Gestational diabetes usually presents after the first trimester, so apart from those women with pre-existing diabetes, the children of women with GDM do not have an increase in the rate of congenital abnormalities. Poor glycaemic control in both pre-existing and gestational diabetes is associated with pregnancy complications including preeclampsia, polyhydramnios, preterm birth, macrosomia and/or growth restriction, intrauterine fetal death, shoulder dystocia and operative delivery. Neonatal complications include neonatal hypoglycaemia, jaundice and respiratory distress. Children of women with either pre-existing or gestational diabetes are at increased risk of obesity and of developing diabetes themselves. Tight control of glucose levels in late pregnancy has been shown to improve perinatal and obstetric outcomes.7 Women with pre-existing diabetes are at increased risk of deterioration of retinopathy during pregnancy and increased risk of pre-eclampsia, especially those with nephropathy and hypertension.2 Treatment for diabetes mellitus includes both diet and medications, including insulin and oral hypoglycaemics. Frequent blood glucose testing and adjustment of therapy is required. Women obtain advice regarding their pregnancies and treatments from a variety of sources. Increasingly the internet is an important source of information.8 In Lagan et al.'s study (where participants were recruited from pregnancy related internet sites), almost 94 percent of women used the Internet to supplement information already provided by health professionals and 83 percent used it to influence their pregnancy decision making. Nearly half of the respondents reported dissatisfaction with information given by health professionals (48.6%) and lack of time to ask health professionals questions (46.5%) as key factors influencing them to access the Internet.8 A number of countries have developed categorisation systems for the risks of drugs in pregnancy. Concerns have been raised regarding the lack of understanding of these systems by health practitioners and both the U.S. Food and Drug Administration and the Australian health authorities have flagged proposed changes to these systems.9, 10 While these categorisation systems from different countries have similarities, there are distinct differences required in their interpretation, and it is not always apparent which system is being used (especially where information is obtained from the internet). Nordeng et al. reported an overestimation of teratogenic risk of medications by Norwegian women in an internet based survey and nearly 70% of women in this study reported that they had chosen not to use a drug because they feared it was not safe, suggesting that non-compliance to medications in pregnancy may be more common than previously documented.11 Swedish studies of the experiences of obstetricians and midwives in treating women with gestational diabetes revealed uncertainty regarding roles and resigned frustration with those women who were noncompliant with advice given.12, 13It is thought that between a third and a half of all medicines prescribed for long-term conditions are not taken as recommended.14 An Australian study5 found that nearly 60% of women attending a major Australian maternity outpatient service were non-compliant with their medications. Compliance, adherence, concordance and persistence are all terms that are used to describe whether a patient takes their medication or adheres to a treatment regime. The terms concordance and adherence are sometimes used interchangeably, and imply that some discussion and agreement of the treatment course has been reached between prescriber and patient. Persistence is the continued adherence over time to the prescribed treatment regime.15 There are many causes of non-adherence but they fall into two broad categories: intentional and unintentional. Unintentional non-adherence occurs when the patient wants to follow the agreed treatment but is prevented from doing so by barriers that are beyond their control. Examples include poor recall or difficulties in understanding the instructions, problems with using the treatment, inability to pay for the treatment, or simply forgetting to take it. Intentional non-adherence occurs when the patient decides not to follow the treatment recommendations. The patient's beliefs and preferences influence their perceptions of the treatment and their motivation to start and continue with it. It follows that to promote adherence to treatment consideration needs to be given to beliefs and preferences that influence motivation to start and continue with treatment, as well as the practical factors that influence patients' ability to adhere to the agreed treatment.15 Patients who have few concerns about their treatment and are accepting of its necessity are more likely to be adherent to treatment regimes than those who have high concerns about the safety of the treatment and are perhaps sceptical of its necessity. Non-adherence may limit the benefits of medicines or other treatment regimes, resulting in lack of improvement, or deterioration, in health. In the case of pregnant women, non-adherence could result in a deterioration of their own long-term health or perinatal complications, with consequences to their unborn child. Women's experiences and attitudes to their condition and its treatment may affect their adherence to treatment regimes and affect their long-term and perinatal outcomes. After a search of the Joanna Briggs Institute Library of Systematic Reviews, the Cochrane Database of Systematic Reviews, Medline and CINAHL, no other systematic reviews were identified that addressed this issue. Therefore, it is the aim of this systematic review to establish the experience of diabetes and diabetes management among pregnant women, and how these experiences relate to their understanding of their condition and adherence to treatment regimes. Inclusion criteria Types of participants This review will consider studies that include pregnant women who have pre-existing diabetes mellitus (Type 1 or Type 2 diabetes) or gestational diabetes mellitus. Phenomena of interest This review will consider studies that explore experience among women with pre-existing or gestational diabetes in pregnancy, and their experiences of adhering (or not) to prescribed treatment regimes. Types of studies This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, qualitative description, ethnography, action research and feminist research. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in the English language will be considered for inclusion in this review. There will be no date restriction on studies to be considered for inclusion in this review. The databases to be searched include: PubMed, Embase, Biosis Previews, Academic Search Premier, CINAHL, PsycINFO The search for unpublished studies will include: EThOS, Index to Theses, ProQuest Dissertations & Theses, Mednar Initial keywords to be used will be: qualitative, experience, perception, understand, understanding, belief pregnancy, maternal, maternity, antenatal, prenatal, gestational diabetes Assessment of methodological quality Qualitative research papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Data collection Data will be extracted from qualitative research papers included in the review using the standardised data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorising these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesised findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form. Conflicts of interest None. Acknowledgements As this systematic review forms partial submission for the degree award of Masters of Clinical Sciences, a secondary reviewer (Mark McMillan RN, GradDip Health Promotion, MClin Sc candidate, JBI) will only be used for critical appraisal. Marion Volckman - Reference Librarian, Women's and Children's Health Network is thanked for assistance with initial literature searching. Craig Lockwood and Zachary Munn are thanked for their conceptual advice, infinite patience and invaluable editorial contribution.