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Abstract
Objective This systematic review examines the qualitative literature on women’s experiences of self-managing chronic conditions in pregnancy.
Design 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.
Participants Pregnant women who are self-managing a chronic condition.
Results 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.
Conclusions 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.
PROSPERO registration number CRD42019136681.
- diabetes in pregnancy
- qualitative research
- Prenatal diagnosis
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Strengths and limitations of this study
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.
Introduction
Chronic diseases that manifest during pregnancy, or exist pre-pregnancy, can have a lasting impact on the health of the mother.1 Numerous conditions can affect women during pregnancy, some confined to that time (eg, pre-eclampsia or gestational diabetes) and others that are longer lasting (chronic hypertension and diabetes). These conditions may lead to harm for both the mother and the baby; hypertensive disorders, for example, are one of the leading causes of maternal mortality globally.2
Self-management
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.3 ,4 ,5 Self-management interventions in pregnancy tend to focus on self-monitoring (blood pressure, blood glucose, etc) and in some cases titrating medication (insulin). Self-management following a hypertensive pregnancy has been explored post-partum, the evidence to date suggests not only is it feasible, but it may result in better diastolic blood pressure control at 6 months post partum.4 In the antenatal period, the OPTIMUM-BP (Optimising Titration and and Monitoring of Maternal Blood Pressure) pilot trial suggested that self-monitoring of blood pressure was both feasible and acceptable to women with chronic hypertension.5 Self-management of diabetes in pregnancy has also been explored. In pregnant women with type 1 and type 2 diabetes, self-monitoring of blood glucose is common6 and self-management programmes in women with gestational diabetes are also becoming more commonplace. 3 ,7 In the general population, self-management has been explored in numerous chronic conditions; in particular hypertension and diabetes, where there is a large body of research around understanding the patient experience.8 ,9 ,10 Much of this research has demonstrated patient’s confidence and ability to self-manage (sometimes referred to as self-efficacy)8 and suggests that self-management strategies improve health outcomes for those with chronic conditions.11 These conditions also affect women during pregnancy, but thus far this population are under-represented in this field of research. Moreover, research on self-management in the general population may not be wholly applicable to the pregnant population. Pregnancy presents an additional set of motivations for self-management, not accounted for in current self-management frameworks which often assume long-term self-management, whereas with pregnancy the period of management is often temporarily bounded even if it continues post partum and considerations are for the mother and baby dyad.
Methods
This review was influenced by the critical interpretive synthesis (CIS) approach.12 A CIS approach leaves more space for interpretation than a conventional systematic review and in theory using this approach allowed us more space to consider lived experiences across a range of chronic conditions. This approach also allowed us to iteratively develop the research question and the inclusion criteria as the search progressed and the lack of research on the self-management of chronic conditions in pregnancy became apparent. In light of a lack of data, it was necessary to limit the scope of the review to the following research question: ‘what are the current behaviours and attitudes among pregnant women regarding the self-management and self-monitoring of chronic conditions in pregnancy?’ (see online supplemental appendix 1).
Supplemental material
Searches were performed in PubMed and CINAHL (EBSCOHost) (1982–present) from inception to February 2021 (see online supplemental appendix 2).
Supplemental material
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’.13 We expanded the search criteria retrospectively to include risk factors for chronic conditions, in order to capture as much data as possible. The authors felt that qualitative literature was best placed to explore the lived experiences of people self-managing during pregnancy. Papers were excluded if the reviewers concluded that commonly recognised qualitative methods were not used, that is, interviews, focus groups, or ethnographic observations.
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.
Data analysis
CIS also informed the analysis of the data.12 Analysis began with a detailed examination of the included papers, identifying themes and developing an understanding of the material. Dixon-Woods et al emphasise what distinguishes a systematic review using a CIS approach is ‘the aim of being critical’ and questioning ‘taken-for-granted-assumptions’12 meaning that the coding framework for this review was developed to critique the idea that general population self-management research was applicable to pregnancy. During the initial analysis, elements of the Burden of Treatment theory, developed for chronic condition management in the general population, were identified in the included literature. The coding framework was revised considering this theory’s key concepts, such as the effect of patient work (eg, self-monitoring, self-management, lifestyle changes) on self-management efficacy and the role of support networks, allowing for a more nuanced interpretation of the woman’s experience of self-management. Data extraction was conducted by BEJ using NVivo V.12 Pro (QSR International Pty Ltd, released 2018), and a coding framework was developed by BEJ and agreed on by the study team (LH, KLT and RJM).
The burden of treatment
May et al have developed a theory explaining the relationship between ‘sick people’ and their healthcare providers in the context of chronic disease. In the absence of a possible cure, patients must engage in ‘routine work’ to manage the disease.14 May et al explain that patient work in the context of the Burden of Treatment theory includes symptom monitoring, treatment management and lifestyle changes while ‘maintaining (these tasks) alongside the demands of other aspects of everyday life’.14 Transferring the burden of treatment to the patient prompts a change in the patient-clinician relationship. Within pregnancy this could theoretically provide women with more agency, as well as more responsibility.
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 et al call ‘sense making’ where ‘people and members of their social networks are expected to identify, understand and explain the diverse tasks that make up their work’.14 This idea was reflected in the themes concerning support from healthcare professionals and family, the impact of a lack of support, and women’s anxiety and understanding of their diagnosis.
Results
Searches in PubMed and CINAHL identified 2745 articles, which when controlled for duplicates left 2695 for screening (see online supplemental appendix 2 and figure 1 for further details. The majority of articles were excluded as they did not include qualitative research or self-management, or the study population was not pregnant women. 25 articles were identified by the two reviewers for full-text review, of which 16 fulfilled the inclusion criteria (see table 1). Data quality checks using the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were carried out (see online supplemental appendix 3). Fifteen of the included studies were of medium to high quality. One was considered low quality because of the small sample size.
Supplemental material
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram of study search strategy.
Characteristics of included studies
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 table 2). Under the former, women express that having a healthy baby, supportive families and supportive healthcare professionals were their primary motivating factors. Barriers to self-management included a lack of knowledge and understanding of the condition lead to feelings of anxiety, as well as a lack of support from families and healthcare professionals. The following sections will address each subtheme in detail.
Quote table: barriers and motivations for self-management
Motivations for self-management
Desire for a healthy baby
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’,15 to ensure they had a healthy start in life. Women expressed fear about the potential to pass their ill health onto the baby. Most often, the initial response to their diagnosis was concern for the baby; ‘oh my God…you know is the baby gonna be OK?’.16 Some women expressed feelings of responsibility for their condition, and their desire to minimise the effect on their baby’s health; ‘I knew I had brought it on myself by being overweight…I felt very responsible’.15
Supportive environment: family
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’.17 When speaking about her partner one woman said ‘he was very supportive in helping me get over things’,18 due to her partner’s support she was able to overcome her fear of blood glucose self-testing. Families and partners who got involed in the recommended lifestyle changes and self-management activities, such as following the same diet, was motivational for pregnant women and increased their adherence to self-management and increased adherence to self-management.
Supportive environment: healthcare professionals
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’.18 Women who understood their condition better were able to make positive choices about their self-management; ‘I would limit my foods in order to control my blood sugar’.19
Barriers to self-management
Feeling anxious and overwhelmed
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’.20 While it was often a lack of information that made women feel anxious, there was some evidence that being given ‘too much information (about gestational diabetes)’15 also made women feel overwhelmed. Women were negative about self-management when they perceived that it had not gone to plan: ‘When I took the higher dose [of insulin], I felt defeated…this is crazy, I don’t think my body is ever going to be perfect’.16
Lack of knowledge and understanding
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’21 thus preventing women from committing to self-management. Contrastingly, others felt as though it was ‘the end of the world’17 leading to women feeling too overwhelmed to self-manage efficiently. Central to the lack of understanding was a perception of insufficient education from healthcare professionals; one woman said that she was given ‘a list of food but no instructions’ meaning ‘you really have to work it out for yourself’.15
Lack of support: family
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’,15 or failing to understand the importance of the dietary guidelines. Some women expressed that adhering to the strict diabetes diet made them feel socially isolated.
Lack of support: healthcare professionals
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’.17 One woman described her healthcare professional’s attitude as ‘here, you take the ball, and you run with it’,22 but found that when her family were not informed about her self-management needs, it was difficult for her to stay on track. Women who wanted to self-manage reported either not being supported adequately by their healthcare professionals or subject to paternalistic responses: ‘you have no idea what you’re doing, I know best, here’s what we’re going to do’.23 Some women had difficulty accessing information and understanding the self-management tasks, particularly when there were language barriers: ‘It’s a bit difficult because my English isn’t very good…I have always been asking for an interpreter, but I have never got one’.24 There were also concerns ranging from a lack of information (‘they didn’t tell me what’s the side effects for the baby’15) to accusations of patronising healthcare professionals who ‘talked down to [me]’ and ‘didn’t trust me’.17
Discussion
Principal findings
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 hypertension25—thus, they are no longer conditions brought about by pregnancy.
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.
Interpretation
Acting for the baby
May et al argue that the work of self-management in the general population is often done in the context of ‘holding together something larger and more complex’,14 alluding to everyday life. While this applies in pregnancy, the work of self-management is also done in the context of maintaining the health of the unborn baby. Previous literature has touched on pregnant people acting ‘not for the self but also for the unborn ‘other’26 and the burden of pregnant women having to be accountable for the health of their baby alongside their own health cannot be underestimated. Current self-management models are not equipped to consider that particular burden of treatment.
Support networks
Current self-management models emphasise that ‘self-management is manifested as both an individual and family construct’27 and underscore the importance and necessity of social networks. The importance of social networks is also realised in the Burden of Treatment theory. May asserts that ‘knowledge and beliefs about health and healthcare are often shared [within social networks]…decisions about what to do, and how to access services, are often distributed amongst multiple participants in a social process’.14 In pregnancy, the sharing of lay knowledge and expertise is commonplace. Hinton et al demonstrated the nature of information sharing among pregnant people, often now in the form of online communities, in those with pregnancy hypertension or raised blood pressure.28 Pregnant women with hypertension valued the advice and support of their peers, and in the online space peer advice tended to trump the advice of medical professionals.28 Support networks are a central part of any self-management model in the general population, often emphasising that ‘self-management is manifested as both an individual and family construct’.27 As both a barrier and a facilitator of self-management, it is evident family support is an important factor in continued adherence. While current self-management models do not accommodate pregnancy entirely, this review demonstrates that elements of existing models, such as social networks and the need for education around diagnosis, are applicable.
Strengths and limitations
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.
Conclusions
Clinical implications
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.
Research implications
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.
Main conclusions
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.
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information.
Ethics statements
Patient consent for publication
Ethics approval
This study does not involve human participants.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
RJM and KLT is a senior author.
Contributors 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.
Funding 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.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
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