Introduction
In previous research, up to 35% of women reported pain related to pregnancy or birth, 6 months to 12 years after childbirth [
1‐
5]. Pain may have many negative consequences on women’s physical and social activities, psychological well-being, intimate relationships, and ability to care for their children [
6‐
9]. Studies have also shown that, in general, individuals with chronic pain (pain with duration > 3 months) [
10] are often at risk of developing complications, including physical and psychological dysfunctions, such as depression and anxiety disorders, impaired cognitive, physical and sexual functions as well as ischaemic heart disease and cerebrovascular disease [
11].
Chronic pain has the capacity to be more complex in its pathophysiology with time and thus potentially more difficult to treat [
11]. In general, contact with health care and adequate treatment are crucial to prevent development of chronic pain and long-term consequences [
11,
12]. However, previous research has shown that individuals with chronic pain do not know where to seek professional support to manage their pain [
13]. In addition, studies have reported that women often do not seek professional help for post-childbirth morbidities [
5,
14,
15]. Barriers to women seeking support include lack of knowledge about the condition, being unaware of available treatment as well as stigma associated with the morbidity [
14,
16‐
19].
Knowledge and information are fundamental to the process of empowerment and play an active role in improving health [
20,
21]. WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health, and as such individuals and communities need to develop skills, have access to information and resources, and the opportunity to participate in and influence the factors that affect their health and well-being” [
21]. Empowerment is a key element for improving health outcomes and high satisfaction with health care [
22,
23]. Access to the right information, at the right time, delivered in the right way, plays a crucial role in a person’s active decision-making [
20,
24]. If individuals have the capacity to make good health decisions, their ability to protect, maintain, and increase control over their health as well as their self-efficacy and ability to achieve change over their condition, are increased [
23,
25]. However, studies have shown that the information provided to women regarding physiological changes during the postpartum period, postpartum health and well-being was inadequate, incorrect, or inconsistent, leading to complications and postponed recovery, which had a negative impact on the transition to motherhood [
26‐
29]. Previous research, investigating women’s experiences of living with enduring perineal trauma, has reported that they did not know what symptoms are considered normal during the postnatal period [
16,
18,
19,
30,
31]. Women who experienced persisting pregnancy-related pelvic girdle pain described it as unexpected [
6,
8].
To our knowledge, this is the first study focusing on women’s perceptions and experiences of information regarding pain persisting after childbirth. By examining the informational support from the women’s perspective, we intend to gain a better understanding of their informational needs and identify gaps within maternal care. Hence, the aims of this mixed method study were: (1)to describe to what extent and which format women reported that they have received information regarding the risk of developing chronic pain related to childbirth from healthcare providers; (2) to investigate women’s experiences of the received, or lack of, information and its consequences; (3) to describe to what extent and which format women would like to receive information.
Discussion
Our main quantitative results showed that most of the women did not receive any information about the risk of developing chronic pain after pregnancy or birth, and that half of them did not turn to healthcare with their problems. The qualitative analysis confirmed the quantitative results and, in addition, showed that the women were told that pain is a natural consequence of childbirth, and would resolve spontaneously. Furthermore, the women did not receive information about where to seek help. The inadequate and incorrect information could also lead to emotional distress. It has also emerged that most of the women would have liked to receive information about pain persisting after childbirth.
Insufficient and incorrect information may lead to women not being aware that pain persisting after pregnancy or birth is a condition that requires medical attention. Our results are in accordance with previous studies reporting that women often do not seek professional help for post-childbirth morbidities because they think that their morbidity is normal, will resolve over time, and/or are unaware of available treatment [
14,
16‐
18,
41,
42]. However, as we have shown, chronic pain related to pregnancy or birth is not uncommon as one in six women reported chronic pain eight months after childbirth, and one in five experienced dyspareunia [
3]. Chronic pain develops because of changes in the central nervous system initiated by acute pain, such as increased communication between neurons, or dysfunction in the descending inhibitory system [
11,
43,
44]. If the initially reversible changes in the nervous system are left untreated, they can become irreversible with time, and the pain will be ultimately refractory to treatment. Therefore, pain researchers and clinicians emphasize the importance of timely and appropriate treatment—not only to decrease the negative impact of pain on quality of life and to reduce suffering—but also to prevent the development of chronic pain and reduce its associated long-term sequelae [
11,
12]. We believe that if women received appropriate information about pain persisting after childbirth, they would more often consult healthcare professionals. Therefore, the opportunity to diagnose and treat, as well as prevent the development of chronic pain would increase. This is in accordance with previous studies showing that delayed help-seeking behaviour leads to delayed diagnosis and treatment and, as a consequence, to poor health outcomes [
45].
In the in-depth interviews, the women also expressed that lack of adequate and accurate information left them unprepared for the pain, which contributed to emotional distress as they felt overwhelmed, anxious, angry, and frustrated. This is in line with previous studies showing that women with enduring symptoms after pregnancy or perineal trauma, described that lack of information resulted in a negative impact on psychological well-being and that the emotional distress was exacerbated when they were unprepared [
8,
19,
46]. Furthermore, some of the women in our study described that emotional distress could also worsen their pain. This is consistent with well-established knowledge, that pain is a multidimensional phenomenon, and that the affective and cognitive aspects play a significant role in how individuals experience it [
44,
47,
48]. In general, perception of pain may be enhanced by negative emotions and diminished by positive feelings [
47,
49]. In addition, the experience of pain can be modified by expectations, and when the women’s expectations are not met, it may enhance their symptoms [
8,
47]. Negative emotions can also impact individuals’ ability to cope with pain as they reduce opportunities to control it. Studies have shown that patients who believe they can control their pain are less likely to report that it interfered with daily functioning and appear to adjust to the pain better than those who do not [
50]. This is in line with Wuytack et al. [
8], who reported that it would be easier for women with persisting pregnancy-related pelvic girdle pain to cope with and manage their pain if they have been given more information about the enduring symptoms.
Most of the women, more than 80% in the quantitative part, and all the women participating in the interviews, agreed that the risk of developing chronic pain should be discussed prior to, or after, childbirth. The information should be given by a midwife or an obstetrician preferably already during pregnancy, as there is often more time to absorb information. According to the quantitative data, the majority of the women receive the information orally but, as it has emerged from interviews, they would prefer to obtain written information. The women were very clear that the information should be given irrespective of the individual risk of developing chronic pain. This is in accordance with previous studies showing that most women need information and want to be prepared for what can happen to them during the postnatal period [
8,
16,
29,
51]. As our results highlight, there is a gap between women’s need of information about pain persisting after childbirth and the information received. According to previous studies, health care professionals are more concerned about this need of information during prenatal, rather than postpartum, care as well as prioritising the infants’ needs and not those of mothers [
8,
41,
51]. According to the Swedish Patient Act [
52], all patients have the right to equal and respectful treatment, self-determination, and participation. This includes the right to be informed about their condition, care alternatives, and possible treatment, including risks of complications as well as methods for preventing illness or injury. The information should be individually adapted to the recipients, and as far as possible, healthcare providers should ensure that the patient has understood the contents and significance of the information [
52]. Access to information is essential to achieving patients’ empowerment. [
22,
53]. According to Cerezo et al. [
22], empowerment may be seen as an “enabling process whereby health care professionals collaborate with patients to help them acquire knowledge and resources and whose outcome is a patient with greater ability to exercise control, manage his/her own condition and to make an informed decision”. Absence of empowerment leads, in turn, to powerlessness, helplessness, loss of autonomy as well as lower quality of life [
23,
53,
54]. There is a consensus among experts that we cannot afford not to empower patients, especially those with chronic diseases, as improving their ability to understand and manage their own disease as well as navigate the health systems is crucial to achieving better health outcomes [
55].
Our results suggest the need for health services to ensure availability of information about pain persisting after childbirth. The lack and inadequacy of the information must be corrected. The purpose of the information is not to frighten women but to alert them. We propose that a booklet or leaflet containing relevant information about the risk of developing chronic pain, symptoms, and treatment, along with advice about appropriate health care settings where women can turn to, should be available. This should be sent home with the woman as a part of antenatal or postnatal care, for instance, at the postpartum check-up. Furthermore, it is crucial to have a multidisciplinary approach in this matter, with midwives, obstetricians, physiotherapists, and psychologists involved, because of the complexity of the problem. It is time to respect women’s rights to be informed about pain persisting after childbirth and give them the opportunity to achieve empowerment, to make good health decisions, and increase control over their health and well-being as well as their self-efficacy.
Methodological considerations
This study used mixed methods, where the quantitative part supported the selection of participants for the qualitative in-depth interviews. The qualitative phase supported the discussion of the outcomes of the entire study (i.e., the interpretation of the quantitative data/results and in-depth understanding of the qualitative research objectives). By using different types of data collection, a researcher can provide more evidence with which to answer research questions as well as enhance the ability to draw conclusions [
32]. The merged results of this mixed method study showed that the findings from the qualitative phase agreed (convergence) with the quantitative part in that most of the women did not receive the information they wanted. Furthermore, the qualitative findings offered in-depth knowledge about women’s experiences of information. They enriched the quantitative results and provided information about the consequences of missing and incorrect information such as that that the lack of information could lead to psychological distress and postponement of care (complementarity) [
56]. However, although we describe consequences as a result of inadequate and incorrect information, there may be other reasons for delayed care seeking. For instance, socioeconomic status depending on profession, education, and employment conditions may influence the women’s experiences. In previous studies, women described various practical barriers, related to financial and time constraints, that prevented them from getting professional help, including the cost of treatment and finding someone to care for the baby. It is therefore possible that being unemployed and having a lower household income can be associated with a higher risk of not receiving professional help [
41]. These, and other socioeconomic factors, should be investigated further. Due to the inclusion criteria, only 13% of the women in the quantitative part, and three women in the qualitative part of the study were foreign-born with a non-Swedish speaking background. This constitutes approximately half of the total of foreign-born mothers in Sweden (27.5%) [
57]. The recruitment of participants also resulted in an under-representation of women with a lower educational level. In previous research, language differences have been identified as a barrier to seeking help for maternal morbidities. Furthermore, women from diverse cultures and with low health literacy were less likely to seek professional help due to a lack of knowledge in recognising the problem or thinking that the morbidity was normal. In addition, high-level education was seen as an enabler empowering women to seek help [
41]. Therefore, including more women from ethnic minorities in our study might have provided a different perspective and should be investigated in future studies. Furthermore, the women who decided to volunteer in the qualitative phase of the study may have been those who experienced the most extensive impact of pain on their lives. This limits the extent to which these findings can be generalized or transferred to other patients and settings or populations [
32,
58]. Further, a self-developed survey instrument was used; although we validated and tested the questionnaire through one-to-one interviews with 15 women. Recall bias may also have influenced the results as the women gave birth to a child eight months earlier. However, it is known that women have a good recollection of their pregnancy, birth and received maternity care even years after the childbirth [
59]. In qualitative research methods, reliability and validity are discussed in terms of trustworthiness, which includes confirmability, dependability, and credibility [
58,
60]. To strive for confirmability, the process of analysing qualitative data has been described in detail with citations provided. The credibility of the data was established by various constellations of research group members holding discussions throughout the analysis process [
60]. As the first author´s background is that of a midwife but also a pain educator, her preconceived knowledge could be disadvantageous during data collection and analyses. However, the researchers were aware of this situation and the involvement of co-authors counterbalanced this pre-understanding and contributed to a balanced discussion of the data [
60].
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