Inflammatory arthritis (IA) is a term used to describe a heterogeneous group of chronic autoimmune diseases characterised by joint inflammation, such as rheumatoid arthritis, juvenile idiopathic arthritis, spondyloarthritis and psoriatic arthritis (1). Pain, stiffness and fatigue are common symptoms in IA, as well as fluctuating and unpredictable disease patterns (1, 2). All of these symptoms can cause challenges in the role as a mother for women with IA (3).

Very few women with IA are advised against having children, as we now have more effective treatment and less severe disease manifestations (4). Still, several studies show that IA is associated with higher rates of childlessness, and many women with IA have fewer children than desired (5–8). The reason behind this may be multifaceted with physical, psychological, social, hormonal, immunological, medical and personal challenges contributing (8–10).

The biopsychosocial model, a well-established framework, describes how biological, psychological and social factors interact and affect one another, contributing to a person's experience of his or her overall health (11). This model can help us understand the complexity of living with chronic diseases, such as IA, where biological (e.g., inflammation, sleep deprivation, pain) psychological (e.g., worrying, unpredictability, vulnerability) and social (e.g., living situation, work, family, support) factors dynamically and reciprocally affect one another. In the same way, this model can also be useful to understand the experience of motherhood, regardless of chronic disease, as a multifaceted experience where biological/physical (e.g., physical changes due to pregnancy and labour, sleep deprivation), psychological (e.g., increased vulnerability, expectations) and social (social network, family, work) factors all come in to play.

The vast majority of research on pregnancy and rheumatic diseases focus on medical treatment, risk factors, and pregnancy outcomes. There are some qualitative studies focusing on women's experiences related to pregnancy and the postpartum period, and the number is growing (10, 12–18). The qualitative studies have provided important in-depth insight into how the women experience motherhood while living with IA, and the challenges these women have to cope with. However many of these studies are more than ten years old. There has been a massive development both within the field of rheumatology in general and specifically relating to pregnancy and rheumatic diseases. Access to medical treatment for people with IA, including biologics when indicated is much better than ten-twenty years ago (4, 19, 20).

Having better insight into the possible challenges these women face in their life as mothers with IA can potentially improve patient/clinician communication, and be of great value when developing health services and resources to best support and guide them through this very important part of life.

The aim of this study is thus to gain a broader understanding of how mothers with IA experience motherhood and the challenges they encounter in a biopsychosocial framework.

Of the 375 questionnaires sent out, 233 questionnaires were returned, and three letters were returned because of incorrect address, i.e., 62% of eligible subjects responded. 186 of these 233 (80%) answered the open-ended question that this study is based upon. The remaining 47 (20%) left the open-ended question blank and only filled out the questions related to health related quality of life, which is investigated in a separate study.

Table 1 shows the demographic data of the women who responded to the open-ended question. Characteristics of the study population are presented as means and standard deviations or raw numbers and percentages.

The aim of this study was to gain insight into the challenges that mothers with IA encounter in their daily life. Many describe difficulties, both physically, mentally and socially that have a large impact on their everyday life. They describe life as a mother with a chronic rheumatic disease as a balancing act, trying to live up to the needs and expectations of their children, family and workplace, at the same time as they try to take care of their own needs in order to function in everyday life.

Experiences and expectations surrounding motherhood are strongly influenced by the culture and society one lives in. Norway is a welfare state, with universal healthcare and a developed system for parents with paid parental leave for up to a year, a free infant healthcare-programme and highly subsidised child-care (23). Studies on Norwegian cohorts of women with psoriatic arthritis, juvenile idiopathic arthritis and spondyloarthritis found altogether low and stable disease activity during pregnancy and the first year after birth (24–26). These are all important factors that potentially influence how Norwegian women with IA experience motherhood. Still, our findings are in line with previous qualitative studies on similar patient groups from other countries, reporting many of the same challenges (10, 12–16). Also Barlow et.al study from 1999 (15), going 25 years back, describe many of the same challenges as our cohort when it comes to parenting with small children. Troubles with everyday tasks, and feelings of guilt for missing out on activities, as well as frustration and inadequacy were also described in this study. Considering the vast improvement in medical treatment for patients with IA in the last two decades, also during pregnancy and breastfeeding (4, 19, 20, 27), one could assume that the described experience of motherhood also should improve. It is however clear from the literature, that despite recent improvements in medical treatment, many IA patients, including those with low disease activity/in clinical remission, have residual symptoms and significant unmet needs (28, 29). Studies have also shown that women with IA overall have a higher disease burden and more unmet needs compared to men (30).

The biopsychosocial model is helpful for clinicians to understand the complexity of how women with IA experience motherhood, and why improvement in medical treatment does not solve all of their challenges. Figure 1 illustrates various elements that has an impact on how women experience motherhood. The relations between the underlying factors are dynamic and intertwined. Many of these factors are relevant for how people with IA experience life with a chronic disease in all life stages, and pregnancy and motherhood can affect and intensify many of these elements contributing to the overall experience. When it comes to the psychological impact of having IA, studies have shown that people with IA are generally more at risk of both depression and anxiety disorders (31) and mothers with IA are more at risk of developing postpartum depression compared to mothers without IA (32, 33). In addition, poor mental health is linked to worse outcomes in IA (34, 35). We do not know if any of the women in this study had a comorbidity of anxiety or depression, but it is plausible that some did, and that this potentially affected their experience of motherhood.

Many women in our study expressed difficulties with prioritizing self-care and exercise, which had a detrimental effect on their function and disease activity, also contributing to the experience of inadequacy. The majority of the women in our study were also working, making prioritizing self-care even more challenging. The cultural expectations of motherhood in the western society, and how this affects women with various health challenges is thoroughly discussed in several studies (14, 36, 37). Attending to and prioritizing own needs, e.g., with exercise and resting, rather than always attending to their children and others needs first, means that the women might not live up to their own and their perceived expectations of others in the role as a mother.

A study by Bar and colleagues (38) gave some interesting insight from men with IA, and their experience of fatherhood. Despite arthritis interfering with specific tasks for these men in the same way that mothers in our study describe, it did not affect the way they perceived themselves as fathers. Strong social support, ability and possibility to prioritize themselves in regards to things such as exercise and rest, and taking ownership of their disease by changing priorities, pacing activities and normalizing their disease were all factors that contributed to a predominantly positive experience of fatherhood. Going back to the biopsychosocial model, these men expressed many positive experiences in the psychosocial domains, illustrating how these can be protective and positive factors in the overall experience of being a parent with IA. It is interesting that several women in our study felt guilty when the dad had to step in and at times do more, such as get up in the morning. No men in Bar et al. study mentioned feelings of guilt and they were not hesitant about seeking and accepting help and support, possibly a result of cultural expectations and differences in parenteral role of mothers vs. fathers (39).

Challenges with disease management and follow-up in relation to pregnancy and the post-partum period, as well as insufficient/contradictory information from various health professionals was brought up as problematic by many women in our study. This can lead to uncertainty and increased stress and worrying, non-compliance, increased disease activity and feelings of inadequacy, illustrating how everything is connected. The findings in this study adds to an already extensive number of studies highlighting problems with unmet information and support needed for this patient group (17, 40–42).

Empowering these women, and learning them good self-management strategies in order to deal with the practical, physical and psychological challenges they encounter in their role as a mother with a chronic disease is vital. Pregnancy and the post-partum period represents a massive life-changing event. EULARs recommendations on patient education (PE) for patients with IA (43) states that PE should be provided as an integral part of their care to increase patient involvement in disease management. They also highlight that the need for education and support might be more prominent when the disease interferes with daily activities, life-events and family roles, and that PE should include discussion on emotional issues and support. Increased focus on PE and self-management interventions in relation to pregnancy and the postpartum period is thus something that should be prioritized (3, 43, 44).

The findings in this study highlights the importance of providing high quality multidisciplinary care with a holistic and individualized approach for this group of patients, where the health care professionals have insights into the common challenges these women encounter. The team of health care professionals should provide advice and guidance on practical aspects of childcare, physical activity, exercise, patient rights, adjustments in work life, patient information, self-management and optimal medical treatment (17). Also encouraging the women to get in touch with peers through i.e., patient organisations, can be of great value (44).

The main finding in this study is that the women with IA experience several challenges related to motherhood. The challenges are multifactorial and complex, including physical, mental and social issues that have a large impact on their everyday life. Focusing solely on improving medical treatment will not solve the challenges these women face. A multidisciplinary approach and focus on patient education and self-management strategies is important to help these mothers thrive in their role as a mother with chronic disease.