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“Walking into the unknown…” key challenges of pregnancy and early parenting with inflammatory arthritis: a systematic review and thematic synthesis of qualitative studies

Abstract

Background

To conduct a systematic review and thematic synthesis of qualitative studies on the pregnancy and early parenting experiences of patients with inflammatory arthritis (IA).

Methods

We searched online databases for English-language, qualitative studies capturing the experiences of females with IA or their healthcare providers with pregnancy and/or early parenthood. We extracted findings from included studies and used thematic synthesis to develop descriptive and higher-order analytical themes.

Results

Of 20 included studies, our analysis identified 5 analytical themes among patients and 3 among providers. Patients’ reproductive desires, the impact of IA on their ability to experience pregnancy, and the availability of information to guide preparedness informed their pregnancy decisions. Patients’ IA management, pregnancy expectations, and access to support influenced their reproductive experiences. Patients’ experiences seeking information and care revealed substantial gaps in reproductive care provision to patients with IA. Reproductive uncertainty related to IA placed a heavy burden on patients’ emotional and psychological wellbeing. Reproductive care provision was influenced by providers’ perceived professional responsibility to address patients’ reproductive goals, fears of negative outcomes, and capacity to harness patient trust, incorporate reproductive care into rheumatology practice and facilitate multi-disciplinary care coordination.

Conclusions

Our review illuminated several barriers to experiencing pregnancy among patients with IA, particularly related to pregnancy planning support, availability of information, and care coordination among the patient’s healthcare team. To improve care, these barriers may be mitigated through the provision of relevant, practical, and consistent information as well as patient-centred multi-disciplinary approaches for managing pregnancy among patients with IA.

Background

Inflammatory arthritides (IA), including rheumatoid arthritis (RA) and systematic lupus erythematosus (SLE), are chronic inflammatory diseases that commonly affect female patients of reproductive age [1, 2]. As disease activity and associated medication use may cause pregnancy complications, patients with IA face unique challenges related to planning and managing pregnancy [2].

The reproductive health needs of individuals with IA are often inadequately managed. In a 2012 international survey of female patients with chronic inflammatory conditions, including IA, the majority of respondents reported pregnancy was not sufficiently addressed in clinical practice and only 40% received consistent reproductive guidance from healthcare providers [3]. Indeed, there is a body of research indicating patients have substantial information needs about pregnancy and early parenting, particularly related to medication use [4,5,6]. Poor dissemination of medication information for pregnancy can lead patients to discontinue beneficial medications due to fear of foetal harm, which may result in poorer outcomes for both mother and baby related to active disease [7]. Given the complexity of managing pregnancy with IA, we aimed to systematically review the qualitative literature reporting patient and provider perspectives of reproductive care provision for female patients with IA.

Methods

Search strategy

We developed and refined our search strategy parameters in consultation with two health sciences librarians (UE, VK). We searched Ovid MEDLINE, Ovid EMBASE, CINAHL, PsycINFO via EBSCOHost, and Social Sciences Citation Index from inception to February 2020. Additionally, we conducted a hand search of relevant bibliographies. We mapped subject headings and keywords of unindexed terms related to IA, pregnancy and parenthood, and qualitative methods (see Additional file 1) to identify citations meeting our inclusion criteria: primary research article; study sample of female patients with IA (i.e., RA, SLE, ankylosing spondylitis [AS], juvenile idiopathic arthritis [JIA], psoriatic arthritis [PsA]) or their healthcare providers, qualitative study design capturing participants’ pregnancy and/or early parenthood experiences, and published in English. The enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement guided our reporting [8].

Study selection

Two authors (NR, RG) independently reviewed titles and abstracts of identified records. Studies meeting the inclusion criteria received full text review. Thereafter, those that continued to satisfy inclusion criteria were forwarded for quality assessment and systematic review. Disagreement was resolved by consensus. We extracted information on the publication year, country, diseases studied, participant characteristics (i.e,. age, sex, patient/provider), study objective, data collection, and analysis methods, reported reproductive topics.

Quality assessment

We used the Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist [9, 10] to assess the quality of included studies. This checklist comprises 10 questions assessing research aims, design, methodology, recruitment, data collection, data analysis, ethical issues, participant-researcher relationship, findings, and research value [9]. Two authors (NR, RG) independently evaluated studies and resolved disagreements through discussion.

Synthesis

Included studies were imported into NVivo 12.6.0. We analysed study results data, including primary quotations and authors’ interpretations included in the text, tables, and supplementary materials. One author (NR) preformed the thematic synthesis, a method combining grounded theory and meta-ethnography approaches [11, 12]. This involved conducting line-by-line coding to develop an initial coding framework which was subsequently applied across all articles [11]. Similarities and differences between codes were used to inform their hierarchical grouping into descriptive themes [11]. Relationships within and between descriptive themes were analysed to generate analytical themes of higher-order constructs that addressed our review objectives [11]. Two authors (NR, MDV) reviewed the coding framework and discussed developing themes.

Results

Our search (Fig. 1) identified 1347 articles. After exclusions, we included 20 studies for thematic analysis (Table 1). The majority (n = 19) reported on 368 female patient perspectives and 3 studies reported on 51 provider perspectives. With respect to disease, 14 studies limited inclusion to a single diagnosis (8 examined RA patients, 4 SLE, and 2 JIA) with remaining studies including a mix of IA patients. Studies reporting provider perspectives compromised primarily rheumatologists as well as midwives, general practitioners, nephrologists, and health visitors.

Fig. 1
figure1

Selection of included studies

Table 1 Characteristics of studies included in systematic review

The CASP Checklist appraisal is summarized in Table 2. All studies clearly stated their aims, appropriately used a qualitative research methodology, and adequately justified its use. Most studies collected, analysed, and reported data adequately, used rigorous data analysis, and clearly stated research findings.

Table 2 Quality assessment of included studies

Our synthesis identified 5 analytical themes among patients: making decisions about planning and experiencing pregnancy, experiencing pregnancy and parenting, navigating caregiving with chronic disease, seeking information and resources for pregnancy planning, and interacting with healthcare providers. We additionally identified 3 analytical themes among providers: providing reproductive health care, interacting with patients, and coordinating patient care with other providers. Our coding framework and representative quotations are presented in Table 3. Relationships between analytical and descriptive themes are depicted in a conceptional model (Fig. 2).

Table 3 Topics covered and illustrative text excerpts for descriptive themes
Fig. 2
figure2

Thematic map of identified analytical and descriptive themes of patient and healthcare provider perspectives. Legend: Making decisions about planning and experiencing pregnancy (Theme 1) is related to experiences of pregnancy and parenting, which are shaped by patients’ disease experience, ability to make adjustments, and secure support (Theme 2). Together these impact pregnancy and parenting with chronic disease (Theme 3). Psychological hardships (Theme 3) are counteracted by expanding individual identity and disease knowledge (Theme 4). Collectively, Themes 1 and 4 influence patient-provider interactions (Theme 5). Providers’ knowledge, fears, and priorities (Theme 6) shape patients’ interactions (Theme 7) and care experiences (Theme 5). Multi-disciplinary care coordination (Theme 8) facilitated reproductive care delivery (Theme 5 and 6)

Patient perspectives

Making decisions about planning and experiencing pregnancy

Making decisions about having children comprised a dynamic balance of patients’ reproductive desires, the impact of disease on their ability to experience pregnancy, and the availability of information to guide preparedness. We identified 5 descriptive themes related to patients’ reproductive decision-making in 17 studies [4, 5, 13, 14, 16, 17, 19,20,21,22,23,24, 26,27,28,29,30].

When discussing making decisions about becoming pregnant, patients emphasized the role of their disease within this process [5, 13, 16, 17, 19,20,21,22,23,24, 26, 29, 30]. Many expressed concerns about disease activity and management during pregnancy and post-partum [5, 24, 29, 30] and shared fears of being unable to care for a child due to their IA [20, 21, 24, 29, 30]. Some patients expressed strong desires to bear children despite these concerns [20, 26, 29, 30] or sought information about alternatives to childbearing (e.g., adoption) [5, 16, 29]. Others chose not to have children or limited their family size [17, 18, 20, 21, 23, 24, 29, 30]. Factors influencing childbearing decisions included their medications [5, 17, 20, 22, 29], disease severity [5, 17, 20, 30], previous pregnancy experiences [20, 30], and support from partners, family, and healthcare providers [5, 19, 20, 30]. Patients in one study discussed navigating contraception planning and pregnancy termination [30].

Making decisions about using medications [4, 5, 13, 14, 20, 22, 26, 27, 29] and breastfeeding [5, 20] were closely intertwined with reproductive decisions. Patients reported desiring more information about medication safety related to fertility, pregnancy, and breastfeeding [4, 5, 20, 29], consequences of changing or discontinuing medications on disease activity and subsequent medication efficacy [4, 5, 20, 29], alternative or adjunct (e.g. folic acid supplementation) therapies [4, 29], and lifestyle modifications [4, 29]. Factors influencing medication decisions included concerns about medication impacts on foetal development [29] and medication discontinuation on disease management and pregnancy [20, 27] as well as desiring to experience pregnancy [26] and breastfeeding [5, 20]. Sources of medication information comprised healthcare providers, including rheumatologists, nurses, and pharmacists [4, 26, 27, 29], as well as online sources [26, 29]. Patients indicated desiring more decisional support related to medication use, particularly guidance from providers [4, 5].

Patients recounted needing to prepare for pregnancy and parenthood, including timing conception, making medication adjustments, achieving low disease activity, and recognizing potential complications (e.g., miscarriage) [5, 16, 20, 27, 29, 30]. Patients also identified needing to prepare for parenting while managing post-partum flares and establishing support systems that include family members and mothers with similar experiences [5, 20, 29].

Many patients described having to balance prioritizing the needs of mother and child [4, 20, 24, 26, 28,29,30]. Patients shared grappling with trade-offs between their desires to become pregnant and breastfeed and to avoid potential harms from medication use, disease flares, and permanent joint damage [4, 26, 29]. They reported self-advocacy was instrumental to realizing their reproductive goals [4, 28,29,30].

Experiencing pregnancy and parenthood

Patients’ experiences of pregnancy and early parenthood were intertwined with their disease management, expectation of pregnancy and parenting, and ability to access support, which was captured by 5 descriptive themes in 16 studies [4, 5, 13,14,15, 17,18,19,20,21, 24, 26,27,28,29,30].

Patients reported challenges when trying to conceive related to fertility, disease activity, and pressure to conceive quickly after discontinuing certain medications [13, 15, 18,19,20, 28, 30]. These were noted to be sources of stress, fear, and emotional hardship [18, 20, 28, 30]. Some patients felt they needed permission from their provider to conceive [19, 28]. Many reported experiencing disease activity during pregnancy and post-partum, describing worsening symptoms, limitations preforming daily tasks, requiring support from caregivers, and experiencing pregnancy complications and hospitalization [4, 13,14,15, 20, 27, 29, 30]. For some, these hardships impeded their ability to work and posed financial challenges [20, 29]. While some patients resolved not to take medications perinatally despite experiencing disease-related challenges [14, 29], others described needing to use medications due to disease severity or worsening symptoms [4, 20, 29]. Some patients experienced disease remission during pregnancy [14, 20, 29]. Several patients who restarted medications post-partum found they were no longer effective and had to seek new therapies [20].

Patients described experiencing the impacts of disease on ability to be a mother, which included navigating pain and fatigue, difficulty physically caring for children, and being unable to breastfeed due to physical limitations or medications used for post-partum flares [5, 14, 15, 17, 20, 21, 24, 28, 29]. Patients reported making adjustments to accommodate for personal disability [5, 13,14,15, 20, 24, 29]. Parenting strategies included choosing to stay at home or arranging flexible work hours, prioritizing rest and self-care, planning family activities requiring limited physical activity, and teaching children to self-sooth [14, 20, 24, 29]. Some patients reported pride in raising highly independent children, although this was also a source of guilt [14, 20]. Ultimately, patients reported needing support for the practical and physical demands of pregnancy and parenthood [5, 13, 14, 17, 20, 21, 26, 29]. Many depended on support enlisted from extended family, while others received limited assistance [5, 13, 14, 17, 20, 21, 29]. Additionally, patients valued emotional and peer support from online communities [5, 26, 29].

Navigating caregiving with chronic disease

Reproductive uncertainty related to IA placed a heavy burden on patients’ emotional and psychological wellbeing. We identified 5 descriptive themes about the impacts of being a caregiver with a chronic debilitating disease in 17 studies [4, 5, 13,14,15,16,17,18,19,20, 23, 24, 26,27,28,29,30].

Many patients reported worrying about unknown effects of disease on pregnancy and parenting [4, 5, 13, 15,16,17,18, 20, 23, 24, 27,28,29,30]. Patients struggled with uncertainty related to managing their disease activity during pregnancy and post-partum [4, 15, 16, 20, 28,29,30]. They shared concerns about fertility [5, 18, 28, 30], timing conception [5, 20], passing their disease to their children [5, 13, 16,17,18, 23, 30], experiencing pregnancy complications [5, 17, 18, 27, 28, 30] or disease progression [5, 18, 20, 24], causing foetal harm with medication use [18, 20, 29], and being unable to meet their parental responsibilities (e.g., taking care of children, financially providing for family) [5, 16, 18,19,20, 29]. Accordingly, patients described the emotional impacts of struggling to cope with personal limitations related to their disease [4, 5, 15, 19, 20, 24, 28,29,30]. Patients felt isolated, anxious, frustrated, beaten down, and useless [4, 5, 15, 18, 20, 28,29,30] as well as restricted in their ability to meet their reproductive goals [18, 30].

Patients described facing judgement from self and others [4, 14,15,16, 20, 24, 26, 28, 30]. They associated stigma with their disease, describing IA as an ‘invisible disability’ [24]. They recounted feeling guilty for requiring help at home and accommodations at work, as well as their children having to develop independence at an early age [15, 16, 20, 24]. Patients shared experiencing judgement and lack of understanding from healthcare professionals regarding their pregnancy intentions, medication decisions, and uptake of medical advice [4, 14, 26] as well as members of their community regarding their ability to become pregnant and fulfil their parental responsibilities [15, 28, 30].

Despite challenges, patients described finding value in motherhood as a driving force for pursing pregnancy and their children as a source of purpose and motivation [5, 15, 20, 24, 28, 29]. Additionally, they depicted creating a self-identity beyond their disease as a parent, caregiver, and employee [5, 13, 15, 20, 24]. Patients who had children wanted to be seen as ‘normal’ parents [5, 15], while those who perceived parenthood was not in their best interest found other goals to pursue [20].

Seeking information and resources for pregnancy planning

Regarding knowledge gaps concerning pregnancy planning with IA, we identified 4 descriptive themes related to seeking information about pregnancy planning and disease management in 11 studies [4, 5, 13,14,15, 20, 23, 26, 28,29,30].

Patients reported encountering poor understanding of disease personally and from their family, community members, and public agencies providing support resources [4, 14, 20, 28, 30]. Patients voiced feeling uninformed and receiving limited information about pregnancy and disease management from healthcare providers [4, 5, 15, 20, 30]. Overwhelmingly, patients shared challenges when seeking high quality, timely, consistent, and accessible information about perinatal disease management [4, 5, 15, 23, 26, 29, 30], emphasizing the importance of specific and tailored information given maternal stage and health literacy [4, 5, 23, 29]. Prior to pregnancy, patients wanted to receive information about disease heredity, fertility, pregnancy planning, pregnancy complications, perinatal disease management (e.g., medication use and discontinuation), birth choices (e.g., natural birth, caesarean), and breastfeeding [4, 5, 15, 23, 29]. Additionally, patients emphasized wanting information and support for early parenting related to pain and mobility, including practical strategies for adjusting to daily challenges [4, 5, 23]. Most reported seeking written information that can be accessed electronically [4, 15, 26, 29]. They also identified needing information addressing prevailing misconceptions about IA to be available for family, friends, employers, and public agencies [4, 5, 30].

Relatedly, patients described seeking support strategies and services [4, 5, 13, 14, 23, 29]. Patients emphasized wanting more avenues for emotional support, including counseling and peer support groups, for addressing feelings of uncertainty and isolation [4, 5, 14, 29]. Patients depicted the role of practical support services, such as social workers, nurses, and hired help, for assisting in household tasks, childcare, and activities of daily living [4, 5, 13, 14, 23]. Patients also described seeking practical strategies for minimizing pain and fatigue when caring for a baby (e.g., bathing, dressing, and feeding tasks) and information about assistive devices [4, 5, 14]. Barriers to accessing support were regional variability of available services, travel requirements for specialized services, existing services not accounting for the needs of patients with IA (e.g., perinatal classes that are physically strenuous), and receiving continuity of care [5].

Finally, patients expressed valuing learning from peers with similar experiences through shared personal concerns, experiences, and advice [4, 5, 23, 26, 29]. Patients were interested in pragmatic information and resources used by peers and further identified peers as sources of emotional support and motivation [4, 23, 29]. The majority of patients participated in online forums or support groups [5, 26, 29].

Interacting with healthcare providers

We identified 4 descriptive themes in 9 studies related to patients’ experiences interacting with healthcare providers [4, 5, 14, 15, 20, 26, 28,29,30].

Patients discussed their experiences receiving care from several providers, including rheumatologists, primary care physicians, obstetricians, counselors, physiotherapists, occupational therapists, midwives, and pharmacists [4, 5, 20, 29, 30]. They valued receiving care from a multi-disciplinary team when possible [5, 29]. Patients who reported dissatisfaction with their care team mentioned issues of inadequate care coordination, a lack of care continuity, and a high frequency of appointments [5]. Some described receiving advice and encountering judgement from allied health professionals with poor disease understanding [4, 5, 14, 30].

Patients also shared diverse experiences discussing pregnancy planning with their providers [4, 5, 14, 15, 20, 26, 29]. They emphasised desiring timely and collaborative conversations about pregnancy planning [5, 15, 26]. Patients who reported positive patient-provider relationships shared establishing a plan for when they decide to start trying to conceive [29]. Those who reported concerns discussing their reproductive goals with providers shared feeling intimidated, fearing judgement, wanting to avoid confrontation, and not receiving support for becoming pregnant [5, 14, 15, 26, 29].

Nevertheless, patients turned to their healthcare providers when seeking and receiving information about pregnancy planning [4, 5, 15, 26, 29, 30]. Information from providers predominantly pertained to medication use and safety pre-conception and during pregnancy [29]. Rheumatologists were identified as the primary source of medical information, although some patients also obtained information from online sources, including forums and social media [4]. Trust in their provider influenced whether patients decided to follow providers’ recommendations or seek information from other sources [4, 26]. Factors influencing provider trust included the amount of information shared about pregnancy with IA, the consistency of information received from their healthcare team, their information preferences, and the provider’s confidence as perceived by the patient [4, 5, 30].

Overwhelmingly, patients indicated requiring compassionate and holistic care from providers [5, 14, 15, 28, 29]. Patients valued providers who were educated in their disease, particularly relating to reproductive care, supported their health and reproductive goals, and provided proactive care based on their individual patient needs beyond medication use [5, 14, 15, 28, 29].

Provider perspective

Providing reproductive health care

Reproductive care provision was influenced by the provider’s perceived professional responsibility for meeting their patients’ reproductive goals, their fears of responsibility for negative outcomes, and their capacity to incorporate reproductive care into their practice. We identified 4 descriptive themes related to the provider’s perspective of delivering reproductive care in 4 studies [4, 5, 25, 26].

Providers, primarily rheumatologists, discussed understanding their professional responsibility [5, 25]. Overall, rheumatologists believed providing some reproductive care was within their professional responsibility, including clarifying pregnancy intentions, educating patients about pregnancy with IA, and optimizing patient’s medication and disease management in anticipation of pregnancy [25]. This definition did not include contraception or abortion care [25]. While rheumatologists recognized it was their responsibility to ensure reproductive age patients on teratogenic medications were using contraception, they focused on managing their disease [25]. They preferred that primary care physicians or gynaecologists prescribe contraceptives [25]. Generally, providers agreed pre-conception counseling was necessary for patients with IA; however, they were unclear about which profession should provide this service [5].

Providers emphasised desiring more guidance for providing reproductive care [5, 25, 26]. Rheumatologists reported that clinical decision-making and patient counseling was challenging given gaps in clinician knowledge about medication safety in pregnancy [26]. They consistently expressed wanting consensus guidelines with clear recommendations for managing diseases and medication use for patients before, during, and after pregnancy and for breastfeeding [25]. Both providers and patients recognized the need for increased awareness of IA and its impact on pregnancy and motherhood among healthcare providers caring for IA patients [5].

Notably, rheumatologists described the impacts of fearing negative outcomes on their patients [25, 26]. Most rheumatologists described experiencing tension between respecting patients’ autonomy to become pregnant and fear of managing high-risk pregnancies and having limited control of pregnancy outcomes [25, 26]. Many had difficulty understanding why patients chose to pursue pregnancy given their risk of complications [26]. Some rheumatologists recognized their own fear may influence how they counsel patients [25]. Additionally, having time restrictions was reported as a barrier to providing reproductive care [4, 25, 26].

Interacting with patients

Providers’ experiences interacting with patients were influenced by their abilities to hold space for patient’s desires amidst their personal beliefs, to harness trust, and to engage patients in discussions about reproductive health, which was captured by 3 descriptive themes in 3 studies [5, 25, 26].

Providers shared their experiences discussing pregnancy planning with their patients [5, 25, 26]. Some rheumatologists recognized they may overestimate the magnitude of pregnancy risks and that their caution may discourage patients from discussing their reproductive goals and place undue pressure on patients to avoid pregnancy [25]. As pregnancy needs to be planned carefully with IA, rheumatologists acknowledged the importance of being aware of patients’ pregnancy intentions and usually respected their patients’ autonomy to pursue pregnancy [5, 25, 26]. Factors facilitating pregnancy planning discussions included patient initiation, reproductive decisiveness, and having a female provider [25, 26].

Providers also discussed providing counseling and managing medication use [5, 25, 26]. Rheumatologists felt most comfortable discussing medications for perinatal disease management [25]. Some recommend pre-natal folic acid supplementation; however, most felt uncomfortable prescribing contraceptives [25]. Providers described medically ill-timed pregnancies (i.e., conception while taking a teratogenic medication or experiencing high disease activity) and medication non-adherence during pregnancy as dilemmas in care [26]. Noted challenges of providing medication information were communicating medication risk to patients, knowledge gaps about medication safety in pregnancy, and confidence in available data [25, 26]. Given the recognized desire to avoid foetal harm among patients, some rheumatologists noted the value of framing discussions about medication use as a benefit to both mother and baby [26]. Overall, providers underlined needing to offer patients pre-conception counseling and timely high quality written information for pre-conception, pregnancy, and post-partum [5].

Finally, providers discussed challenges of building patient-provider relationships [5, 25, 26]. Several rheumatologists acknowledged that a ‘gloom and doom’ approach towards pregnancy planning diminished patient trust [25, 26]. Trust was recognized to contribute to patient adherence to medical advice [26]. Distrust of the medical community was noted to persist in marginalized communities [26].

Coordinating patient care with other providers

We identified 2 descriptive themes related to coordinating patient care in 3 studies [5, 25, 26].

Providers, like patients, recognized the value of collaborating on patient care planning with a multi-disciplinary team, including obstetrician-gynaecologists, nurses, midwives, and occupational therapists [5, 25, 26]. Key barriers to patient care coordination included limited communication between providers and regional infrastructure for specialized multi-disciplinary teams, leading to unnecessary lab testing and inconsistent medication recommendations [5, 26].

Moreover, providers recognized the need for providing support services and tailored care to IA patients [5, 25]. Identified services included pre-conception counseling, social and psychological supports for the emotional impacts of high-risk pregnancy and parenting with IA, and social support for the practical challenges of pregnancy and early parenting [5, 25].

Discussion

We thematically synthesized 20 qualitative studies on the pregnancy and early parenting experiences of 368 patients with IA and 51 providers. Our conceptual model illuminates the complex relationships between patient and provider perspectives about reproductive care provision, patients’ experiences of IA and pregnancy, and patients’ processes for seeking information and making reproductive decisions. Our analysis suggests how informed patients felt, how well their IA was managed, and how capable they were of accessing support informed the acceptability of their pregnancy and early parenting experiences.

For providers, our results illuminate the necessity of collaborative, comprehensive, and patient-centred approaches to delivering reproductive care. There is room for improving how providers build trust, support patients’ reproductive goals and expectations, and collaborate in making decisions, while in turn building their professional confidence in reproductive care provision to patients with IA [5, 14, 15, 25, 26, 28, 29]. Moreover, patients would benefit from comprehensive care beyond medication use for IA through multi-disciplinary care coordination of their healthcare team, connecting to peers with similar experiences, and receiving referrals to psychological and social services and resources [4, 5, 14, 25, 26, 29].

For patients, our review highlights measures within a patient’s control with the potential to improve their reproductive care experience. It is important that patients have conversations with their providers about pregnancy planning early to reduce potential hardships related to achieving low disease activity pre-conception, timing pregnancy, making medication adjustments, and preparing for potential complications [5, 20, 29]. As such, patients must feel comfortable discussing pregnancy planning and their pregnancy intentions with providers. When seeking a referral for alternative or additional support, patients may consider asking potential providers about their knowledge and experience providing reproductive care to patients with IA. Beyond clinical disease management, patients may benefit from practical and emotional support services to mitigate the personal impacts of pregnancy and parenting with IA [5, 25].

It is important to contextualize our review with the release of perinatal guidelines for medication use in IA in 2016 and 2020 [31,32,33,34]. We included articles published from 2006 to 2020. Studies specifically exploring pregnancy [4, 5, 20, 25, 26, 29, 30], as opposed to parenting with IA, first appeared in 2012 with the majority published between 2018 and 2020. This included few studies (n = 3) on the provider perspective [5, 25, 26], which depicted the need for professional guidance for rheumatologists providing reproductive care, including recommendations for managing perinatal disease activity and medication use, despite the release of aforementioned guidelines.

Strengths and limitations of our review warrant discussion. We developed and employed a comprehensive search with research librarians to capture published studies reporting on pregnancy and early parenting among female patients with IA. We used established methods for evaluating reporting of qualitative studies and synthesizing qualitative results [9, 11, 12], which provided transparency of our data analysis and interpretation processes. An inductive approach ensured themes were derived from the data and two authors reviewed the coding framework and thematic synthesis to enhance the credibility of findings. Some studies provided limited participant demographic information, which may affect the adaptability of our results. It is also possible that the identification of relevant studies was limited by publication bias; however, as qualitative synthesis aims to provide interpretive explanation rather than predictions, sampling is meant to be purposive as opposed to exhaustive [12, 35]. Finally, our analysis was limited by the scope of research in this area, which to-date has not extensively explored the intersectional influences of gender and race on patient’s reproductive experiences or their experiences managing contraception and terminating pregnancies.

Our review provides a conceptional understanding of the reproductive care experiences of female patients with IA and their providers. It is critical for providers to recognize the toll of uncertainty felt by patients ‘walking into the unknown’ of navigating pregnancy and early parenthood. Enhancing the degree of support felt by individuals with IA by engaging in open conversations about pregnancy planning and shared decision-making may empower patients and strengthen patient-provider relationships. Interventions focused on facilitating access to reliable and timely information and practical and emotional support may help lessen the personal impacts of pregnancy planning and parenting with IA.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analysed for the study.

Abbreviations

AS:

Ankylosing spondylitis

CASP:

Critical Appraisal Skills Programme

ENTREQ:

Enhancing transparency in reporting the synthesis of qualitative research

GP:

General practitioner

IA:

Inflammatory arthritis

JIA:

Juvenile idiopathic arthritis

OB-GYN:

Obstetrics-gynaecology

PsA:

Psoriatic arthritis

RA:

Rheumatoid arthritis

SLE:

Systematic lupus erythematosus

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Acknowledgements

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Funding

Dr. De Vera holds a Tier 2 Canada Research Chair and is a recipient of a Scholar Award from the Michael Smith Foundation for Health Research. Dr. Sarah Munro is a recipient of a Scholar Award from the Michael Smith Foundation for Health Research. Nevena Rebić is a receipt of a CIHR Drug Safety and Effectiveness Cross-Disciplinary Training (DSECT) programme award. This research was funded by a grant from Canadian Initiative for Outcomes in Rheumatology Care.

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All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. MDV had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Study conception and design: NR, UE, VK, and MDV. Acquisition of data: UE and VK. Analysis and interpretation of data: NR, RG, UE, VK, SM, GH, NA, NB, and MDV.

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Correspondence to Mary A. De Vera.

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Rebić, N., Garg, R., Ellis, U. et al. “Walking into the unknown…” key challenges of pregnancy and early parenting with inflammatory arthritis: a systematic review and thematic synthesis of qualitative studies. Arthritis Res Ther 23, 123 (2021). https://doi.org/10.1186/s13075-021-02493-z

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Keywords

  • Inflammatory arthritis
  • Pregnancy
  • Systematic review
  • Qualitative methods