RJM and KLT is a senior author.
This systematic review examines the qualitative literature on women’s experiences of self-managing chronic conditions in pregnancy.
Systematic review of qualitative literature. Searches were performed in PubMed and CINAHL from inception to February 2021. Critical interpretive synthesis informed the coding framework and the analysis of the data. The Burden of Treatment theory emerged during the initial analysis as having the most synergy with the included literature, themes were refined to consider key concepts from this theory.
Pregnant women who are self-managing a chronic condition.
A total of 2695 articles were screened and 25 were reviewed in detail. All 16 included studies concerned diabetes self-management in pregnancy. Common themes coalesced around motivations for, and barriers to, self-management. Women self-managed primarily for the health of their baby. Barriers identified were anxiety, lack of understanding and a lack of support from families and healthcare professionals.
Pregnant women have different motivating factors for self-management than the general population and further research on a range of self-management of chronic conditions in pregnancy is needed.
CRD42019136681.
Pregnant women’s experiences of self-managing during pregnancy is under researched compared with the general population. Lived experiences are often over looked in self-management literature and by using qualitative literature we have been able to address some of these research gaps.
Limitations include that the coding framework is constrained by how the original researchers interpreted the interviews and their interactions with patients.
Distinguishing between pre-existing chronic conditions and pregnancy acquired chronic conditions is important, but it was not a distinction that was reflected in the dataset; it is both a limitation of the included studies and this review.
The burden of treatment theory does not perfectly map to pregnancy, however elements of this theory are helpful in understanding how and why patients interact with self-management.
Chronic diseases that manifest during pregnancy, or exist pre-pregnancy, can have a lasting impact on the health of the mother.
Self-management has been shown to support and improve the management of chronic conditions in the general population and there is a growing body of research to suggest self-management of chronic conditions in the pregnant population is also effective.
This review was influenced by the critical interpretive synthesis (CIS) approach.
Searches were performed in PubMed and CINAHL (EBSCOHost) (1982–present) from inception to February 2021 (see
Potentially eligible studies were screened by two independent reviewers against the following inclusion criteria:
Chronic condition: including but not exclusively diabetes (gestational or chronic), hypertension (gestational or chronic), obesity, kidney disease.
Pregnancy.
Self-management: including but not exclusively self-monitoring, self-weighing, self-care.
Qualitative methods.
This review used a broad definition of self-management, ‘the ability of an individual, in conjunction with family, community and healthcare professionals, to manage symptoms, treatments and lifestyle changes’.
Two reviewers (BEJ and JK) independently reviewed the titles and abstracts of identified articles, a full-text assessment of the relevant papers by both reviewers followed. The reference lists of included studies were screened but found no further articles to include. Disagreements on articles were resolved by consensus or discussion with a third reviewer (KLT). Data extraction was conducted by BEJ and checked by the study team.
CIS also informed the analysis of the data.
May
The first interpretation of the data, reviewing the themes that already existed in the included papers, revealed the synergy with the Burden of Treatment theory; therefore, the coding framework was iteratively mapped to two broad themes reflecting elements of the burden of treatment. These themes were grouped around motivations for self-management and barriers to self-management. As the coding progressed, more elements of the theory were incorporated into the analysis. One element of the theory is ‘the structure and performance of patient work’ a process that May
Searches in PubMed and CINAHL identified 2745 articles, which when controlled for duplicates left 2695 for screening (see
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram of study search strategy.
Characteristics of included studies
Title | Year | Authors | Chronic condition | Journal | Sample size | Setting | Qualitative method |
Living with gestational diabetes in a rural community | 2014 | Abraham and Wilk | Diabetes | The American Journal of Maternal and Child Nursing | 10 | USA | One on one interviews |
Women’s experiences of gestational diabetes self-management: A qualitative study | 2013 | Carolan | Diabetes | Midwifery | 15 | Australia | One on one interviews, focus group |
Women’s experiences of factors that facilitate or inhibit gestational diabetes self-management | 2012 | Carolan | Diabetes | BMC Pregnancy and Childbirth | 15 | Australia | One on one interviews, focus group |
Experiences, perceptions and self-management of gestational diabetes in a group of overweight multiparous women | 2014 | Chavez-Courtois | Diabetes | Cien Saude Colet | 5 | Spain | One on one interviews |
‘Is gestational diabetes a severe illness?’ exploring beliefs and self-care among women with gestational diabetes living in a rural area of the south east of China | 2016 | Ge, | Diabetes | Australian Journal of Rural Health | 17 | China | One on one interviews |
The maternal experience of having diabetes in pregnancy | 2011 | Nolan | Diabetes | Journal of the American Academy of Nurse Practitioners | 8 | USA | Focus groups |
Self-monitoring lifestyle behaviour in overweight and obese pregnant women: qualitative findings | 2018 | Sheih and Draucker | Overweight/ | Journal of Clinical Nursing | 13 | USA | One on one interviews |
Socio-cultural aspects of self-management in gestational diabetes | 2012 | Wazqar and Evans | Diabetes | Diabetes Nursing | 12 | Canada | Secondary analysis of one on one interviews |
‘I was tired of all the sticking and poking’: Identifying barriers to diabetes self-care among low-income pregnant women | 2015 | Yee | Diabetes | Journal of Healthcare for the Poor and Underserved | 10 | USA | One on one interviews |
Factors promoting diabetes self-care among low-income, minority pregnant women | 2016 | Yee | Diabetes | Journal of Perinatology | 10 | USA | One on one interviews |
Lived experience of blood glucose self-monitoring among pregnant women with gestational diabetes mellitus: a phenomenological research | 2017 | Youngwanichsetha and Phumdoung | Diabetes | Journal of Clinical Nursing | 30 | Thailand | One on one interviews |
Self-management of gestational diabetes among Chinese migrants: A qualitative study | 2018 | Wah | Diabetes | Women and Birth | 18 | Australia | One on one interviews |
Ethnic Differences in Dietary Management of Gestational Diabetes Mellitus: A Mixed Methods Study Comparing Ethnic Chinese Immigrants and Australian Women | 2019 | Wan | Diabetes | Journal of the Academy of Nutrition and Dietetics | 83 | Australia | One on one interviews and diary entries |
The experience of gestational diabetes for indigenous Māori women living in rural New Zealand: qualitative research informing the development of decolonising interventions | 2018 | Reid | Diabetes | BMC Pregnancy and Childbirth | 10 | New Zealand | One on one interviews |
‘Diabetes Just Tends to Take Over Everything’: Experiences of Support and Barriers to Diabetes Management for Pregnancy in Women With Type 1 Diabetes | 2019 | Singh | Diabetes | Diabetes Spectrum | 15 | USA | One on one interviews |
Barriers to Gestational Diabetes Management and Preferred Interventions for Women With Gestational Diabetes in Singapore: Mixed Methods Study | 2020 | Hewage | Diabetes | JMIR Formative Research | 15 | Singapore | One on one interviews, in a mixed methods study also including a survey |
Included studies were published between 2011 and 2020 and all focused on diabetes in pregnancy. Six were conducted in the USA, four in Australia and the remaining studies were carried out in Canada, Spain, Thailand, China, Singapore and New Zealand. The studies recruited from a range of settings: gestational diabetes clinics, antenatal clinics supporting low-income women, healthcare provider’s offices, day care centres and hospital based obstetric clinics. Fifteen of the studies used one-to-one interviews and one used focus groups for primary data collection. Two studies supplemented the interviews with focus groups, one supplemented with additional diary entries. One study was a mixed-methods study, including one-to-one interviews alongside survey data. The study population for all included studies was pregnant women, although one study had a mixed population of women who were currently pregnant, women planning on getting pregnant, and women who had previously been pregnant. Only papers concerning diabetes self-management in pregnancy fulfilled the inclusion criteria, leading to the results focusing on the challenges of self-management in this disease.
The two broad themes that emerged from the data were motivations for and, conversely, barriers to self-management during pregnancy (see
Quote table: barriers and motivations for self-management
Barriers to self-management | Motivations for self-management | ||
Lack of knowledge and understanding | ‘Actually, I didn’t know anything about it…So, I…thought that if you were diabetic then you kind of get it. But then I didn’t know something you can just develop during pregnancy as well. So, it was quite new to me.’ | Desire for healthy baby | ‘I have a responsibility to care for my child…and to care for this baby inside of me…For me, I wasn’t going to let anything get in the way…’ |
Feeling anxious and overwhelmed | ‘With the fourth pregnancy, I had sort of lost control. I was living in the garage with my three children [and husband). I was huge and six months [along in my pregnancy] when I was diagnosed with depression….I didn’t want to do anything. I’d just wake up [and] went through the motions.’ | Supportive environment: family | ‘If it’s not because of my husband, I couldn’t have made it this far, like he would remind me, sometimes when I want to eat something he would just remind me not to, and like when we go for shopping he would buy the healthy stuff.’ |
Lack of support: family | ‘I need to cook for my husband and I can’t make him eat the same thing…I need to follow him because he needs energy for his work…and I can’t avoid using sauce, you know how on the menu it says you need to avoid sauces and stuff, I can’t do that, my husband wouldn’t want to eat according to that.’ | Supportive environment: HCP | ‘The diabetes educator is really friendly…she explained things very like, in a very good way Yes, yes and—like, she did a demo in front of me, how to inject yourself. It was really scary first time. They told me everything.’ |
Lack of support: HCP | ‘You are told that you have this and nobody spends time with you, it’s kind of frustrating because you want to cry. You think that it’s something you did wrong’ |
HCP, healthcare professional.
The most significant motivating factor for self-management was the desire for a healthy baby. Pregnancy comes with specific concerns and anxieties, women felt anxious over the burden of self-management and the health of their baby. It was clear that many women wanted to ‘do the right thing by the baby’,
When the familial support was positive, women were motivated to self-manage for reasons beyond the health of the baby: ‘The biggest thing I can recommend is getting support. If you try to do it on your own, it’s going to seem very confusing and tedious’.
Similarly, a supportive and constructive relationship with healthcare professionals proved to be a strong motivator for self-management, often minimising feelings of anxiety and uncertainty. Healthcare professionals who provided self-management advice gave women more autonomy over their pregnancy, ‘the diabetes educator is really friendly…she did a demo in front of me, how to inject yourself’.
In this dataset, women often described feelings of anxiety and were overwhelmed by the prospect of managing their new condition. Women reported feelings of unhappiness or low mood while learning to self-manage, calling it ‘frustrating’. Some women found trying to follow self-management guidelines created lot of anxiety: ‘It creates a lot of anxiety. Like I am hungry but I don’t want to eat now because I don’t know if I harm the baby. But I feel hungry and could not eat’.
A lack of knowledge and understanding often led to a lack of motivation to self-manage. Women who did not understand their condition often underestimated the seriousness of their diagnosis or heard anecdotally from other women that it was not ‘a severe illness’
This dataset reported traditional forms of support networks: women’s families, friends, and their healthcare professionals. A key theme to emerge from the data was the negative effect of a lack of familial support, which made women feel isolated and alone. Without strong family support networks women either stopped complying with self-management or lost the motivation to self-manage. Concerning dietary self-management women reported their families being unwilling to follow the same dietary restrictions because ‘you can’t expect everybody to change everything’,
A discordant relationship with healthcare professionals made women feel less motivated to self-manage, ‘I love my OBGYN, but I feel they are always in a hurry. Like they don’t have time to sit there and talk to you about what to do about it (GDM), but they are always in a hurry’.
This review found that women with diabetes predominantly undertake self-management during pregnancy for the health of their baby. Support networks are crucial in alleviating the burden that comes with managing a chronic condition, particularly a new one, such as gestational diabetes. When these networks are less effective, women may feel overwhelmed by the self-management, which is compounded by a lack of knowledge and understanding.
One of the most notable findings from this review was the lack of research dedicated to managing chronic conditions in pregnancy. Diabetes was the only condition represented in the included literature, but with only 16 papers eligible for inclusion, the qualitative evidence base around managing gestational or chronic diabetes in pregnancy is still thin. While the findings of this review are framed by the self-management challenges of diabetes, a number of generic activities are applicable across other chronic conditions. Self-management of diabetes (type 1, type II and gestational) includes self-testing (of blood glucose levels) and diet and exercise management, all of which are applicable more widely in pregnancy. However, it is clear there is a lack of specific research on other chronic conditions in pregnancy, such as hypertension. It is also worth noting that in the general population chronic conditions are self-managed due to the absence of a ‘cure’, but this is not strictly the case in pregnancy where conditions can be temporarily bounded by the pregnancy; gestational diabetes and hypertension (or pre-eclampsia) can be resolved with delivery, and if they are not resolved, they are recategorised as type 2 diabetes or hypertension
While some of the motivations and barriers identified in this review are applicable to chronic conditions in the general population, this review has also demonstrated that the motivating factors for pregnant women to self-manage are different to those motivating the general population; none more so than the desire to improve outcomes for the baby. As far as the authors are aware this paper is the first to use the burden of treatment theory as a theoretical lens to explore experiences of chronic disease management in pregnancy. Although this theory does not fully account for the specific challenges of pregnancy, as demonstrated by this review, it still broadly accounts for the actors and work involved in self-management in this context. Using this theory allowed for a deeper understanding of the burden of self-management and the work involved.
May
Current self-management models emphasise that ‘self-management is manifested as both an individual and family construct’
The research question evolved throughout the search as it became apparent that little data on self-management in pregnancy existed, and none outside of diabetes management. This review should act as a call for further work. Lived experiences are often over looked in self-management literature and by using qualitative literature we have been able to address some of these research gaps.
Limitations include that the coding framework is constrained by how the original researchers interpreted the interviews and their interactions with patients. Distinguishing between pre-existing chronic conditions and pregnancy acquired chronic conditions is important, but it was not a distinction that was reflected in the dataset; it is both a limitation of the included studies and this review. While the majority of the included papers were on gestational diabetes, there were two on pre-existing diabetes, and three with a mixed population of gestational and chronic diabetes. The burden of treatment theory does not perfectly map to pregnancy, however, elements of this theory are helpful in understanding how and why patients interact with self-management. Many of the included papers specifically considered barriers to self-management, as opposed to facilitators, thus potentially creating a negative bias towards self-management.
Included studies took place across a variety of international settings, operating within different health systems, ranging from those dominated by private insurance-based systems to those with national healthcare systems aimed at universal healthcare coverage. Individualised medicine is intertwined with self-management; six of the included studies took place in the USA, where they operate within an insurance-based system that lends itself to an individualised approach to medicine. With the exception of Canada, New Zealand and Singapore, none of the other countries included in this review have health systems based on almost near universal healthcare coverage. A patient’s relationship with their healthcare system also affects their relationship with the acceptability of self-management and their efficacy undertaking it. As none of the included studies were conducted in the UK, it raises questions about how pregnancy self-management would operate within the National Health Service.
This review suggests there are several ways to improve adherence to self-management interventions in pregnancy, these interventions often involve self-monitoring and titrating medication. Healthcare professionals communicating the importance of self-management in terms that focus on the health of the baby, and educating women on the condition they have been diagnosed with, could have a positive impact on self-management adherence.
There is a need for research on the self-management of chronic conditions in pregnancy, particularly in chronic conditions other than diabetes. There are ongoing trials on self-management in pregnancy, predominantly in hypertension, but how self-management will fit into usual care remains to be seen. Remote forms of care are now more commonplace, in light of this, a better, qualitative understanding of the new burden of treatment self-management creates is needed.
This review shows that the primary motivating factor for women self-managing is the health of their baby. Their support networks and their understanding of the condition contribute to whether they self-manage effectively. The burden of treatment shifting to women requires further research, as patient work increases, feelings of anxiety can also increase. In this dataset, it was clear that some women found this treatment shift to be overwhelming but their anxiety largely stemmed from a lack of knowledge and understanding of the condition with which they had been diagnosed. Evidently, education is a barrier to pregnant women effectively self-managing, as when these issues are addressed women are willing and able to self-manage.
BEJ, KLT, LH, RJM and NR contributed to creating the research question and parameters of the review, including the search strategy. BEJ conducted the search with assistance from NR. BEJ and JK reviewed the titles and abstracts of identified articles and carried out the full text assessments. Disagreements on reviewed articles were resolved by consensus or discussion with KLT. Data extraction and complete analysis was conducted by BEJ and reviewed by KLT, LH and RJM. The write up was led by BEJ, with edits provided by KLT, LH and RJM. BEJ is the guarantor for this research.
This research was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Oxford (NIHR CLAHRC Oxford) now recommissioned as NIHR Applied Research Collaboration Oxford and Thames Valley, the Primary Care Research Trust, and a NIHR Programme Grant (RP-PG-0614–-20005). RJM, KLT and BEJ receive funding from the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Oxford at Oxford Health NHS Foundation Trust now recommissioned as NIHR Applied Research Collaboration Oxford and Thames Valley (no grant number). BEJ received funding from the Primary Care Research Trust (R62050/CN001). RJM was supported by a Research Professorship from the National Institute for Health Research (NIHR-RP-R2-12-015). LH received funding from the NIHR Oxford Biomedical Research Centre.
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