Nine pregnant women with diagnosed PGP were recruited to the study over two periods. The first period focused on the experiences of first-time mothers and the second focused on deepening and enhancing the experience by focusing on parous women with previous experiences of PGP. The data collection continued until the level of redundancy was achieved, i.e., no substantial new information was discovered in relation to previous findings during data collection and analyses. The informants were recruited by one of the authors (IM) who worked as an obstetrician in the out-patient clinic. The invitation to participate in the study was put forward after the counselling was completed. IM did not give any further medical counselling after their first visit. This was to assure that the informants were not in a dependent relationship with the author.
Two of the authors (MP and IM) have vast experience helping pregnant women deal with PGP during and after pregnancy. Generally, extensive pre-understanding may be disadvantageous during data collection and analyses in qualitative research. However, the researchers were aware of this situation early on and the constant involvement of the two co-authors without this experience counterbalanced this pre-understanding and made it possible to explore and discuss the data in an balanced manner.
As all informants were referred to out-patient clinic counselling due to their situation, it is likely that they comprise a selected group of women with more advanced symptoms than most others in the population. However, few symptoms described were unfamiliar to the experienced authors or not described in the literature previously; hence the general medical picture of the informants was consistent with the pre-understanding achieved when counselling women with PGP on a regular basis. Furthermore, all informants were examined by an experienced obstetrician, ensuring that the pain problems these women were experiencing were related to PGP and no other back or pelvic problems. Results from a small sample of informants cannot be generalised; however, the experiences and impacts on daily living reported by the informants in this interview study may be recognised by other women suffering from PGP and living in similar contexts.
There is always a risk of an overrepresentation of talkative individuals when recruiting for interview studies. The variation in lengths of interviews might indicate that a variety of informants were represented. Furthermore, socioeconomic status depending on profession, education and employment conditions may influence the experiences of the women. Some of the informants were able to work part-time for several weeks before full sick leave as there were possibilities to adjust work tasks as well as working positions, while others had no such opportunities which resulted in sick leave as the work could not be adjusted to the individual. The various backgrounds, educational levels as well as professions representing a range of common professions among women contributed to the rich material. As to validate the findings, a thick description is provided that summarizes the codes, and quotations have been used to illustrate the properties.
The findings of this study elucidate the stress and feeling of incapacity in many aspects of life women with PGP may experience during pregnancy. The core category “Struggling with daily life and enduring pain” embraced the actions and consequences the informants had to manage. The perceived incapacity had impact on many aspects of life resulting in a daily struggle to obtain an individual balance of adjusted activity and rest without increasing the pain. In Sweden, the societal opinion of pregnancy is that it is a normal condition implicating that a woman with a normal pregnancy should be able to continue her life as usual during pregnancy. The view of pregnancy as a normal condition where pregnancy-related problems not necessarily should be a reason for sick leave is widely spread, for example stated by the information available at the web site of the Swedish Social Insurance Agency
. However, in various Swedish studies and reports, the prevalence of sick leave in pregnancy is reported to 39% - 52%
[15, 27, 28]. A considerable part of these women are on sick leave due to back or pelvic girdle pain
[27, 29]; hence a substantial number of pregnant women are affected each year.
Previously, quality of life in pregnant women with back pain has been studied using quantitative methods. Findings show that pregnant women with back pain rate their total health – related quality of life significantly lower than pregnant women without back pain in late pregnancy. The significant differences are also present regarding some of the subscales (sleep, energy, pain and physical mobility). Additionally, women with back pain report increased negative affection on occupation, ability to perform jobs around the house, social life and hobbies than women without back pain in late pregnancy
. Further, the association of poorer sleep and back pain in pregnant women is described. These quantitative findings of poorer health-related quality of life are similar to the results of this interview study. Our informants expressed their experiences of bodily failure leading to sick leave and dependence of others to manage their daily life. Also, the informants expressed how the pain disturbed their ability to sleep and recover. Other studies have shown that sleep difficulties in pregnancy may be related to increased levels of depressive symptoms later in pregnancy
, and in a population-based study of insomnia and depression in late pregnancy, the presence of PGP and lower back pain were significantly related to insomnia, but not associated with depressive symptoms
. Furthermore, emotional distress during pregnancy in women with PGP is associated with persisting pelvic girdle syndrome postpartum in a Norwegian study. The more severe pain problems during pregnancy, the less recovery rate six months postpartum. Furthermore, reporting emotional distress at both gestational weeks 17 and 30 show associations with persistent pelvic pain syndrome
. The impact of pain and decreased ability to fulfil the expectations from family and colleagues expressed by the informants may contribute to an increased vulnerability and risk of developing depressive symptoms. Also, as a number of women experience catastrophizing during and after pregnancy
, this could also contribute to the experiences expressed. An overall assessment of sufficient pain management should be considered in all clinical consultations of pregnant women with PGP as the findings from this and other studies indicate that the experience of persistent pain contributes to sleep problems, poorer quality of life and may contribute to increase depressive symptoms.
The literature on the experience of living with PGP and its impact on daily life are limited. To our knowledge, there are no previous qualitative publications that investigate the impact of PGP on daily life experienced by pregnant women. A qualitative Norwegian study of women’s contributions to Internet-based discussion forums show that the condition of PGP is perceived as unpredictable and disabling
. The findings explore to what extent one should endure; the women participating in the forums advise each other to rest and be careful so as not to make the situation worse. Using wheel chairs or crutches was seen as the worst case scenario and women fear that their condition would not improve after childbirth
. Although it is likely that not all the women participating in the Internet forums suffer from PGP, the findings correspond to the experiences of our informants with a diagnosis of PGP. Our core category “Struggling with daily life and enduring the pain” may be applied on these findings as well. The Internet-based discussions address the unpredictability and disability related to PGP; subjects very similar and significant to the experiences expressed by our informants.
The experiences of women living with chronic bodily pain, such as fibromyalgia, have been studied and these findings show some similarities with women with PGP in pregnancy. Söderberg et al. (1999) performed an interview study with 14 women living with fibromyalgia. The women revealed an experience understood as three connected themes: loss of freedom, threat to integrity, and a struggle to achieve relief and understanding
. Furthermore, the experience of fibromyalgia pain was expressed as a double burden: coping pain that can be unpredictable and destructive as well as managing doubts from others, as the condition causing the pain is invisible. All informants strived to normalize their daily life by finding ways to distract the pain by doing joyful tasks experienced as worthwhile and reconciling living with the constant pain by finding other ways of dealing with pain
. These findings of living with chronic pain conditions have many similarities with the findings of our study despite the differences in conditions and circumstances.
Joachim and Acorn (2000) present a preliminary framework of the stigma of visible and invisible chronic conditions, which indicates that being different from the population in general might lead to stigmatization, so the individual with a chronic condition chooses strategies to either reveal or hide the condition
. Pregnancy comes with many expectations, norms, and values set by society; for instance, the previously mentioned statement that pregnancy is a normal condition
. Applying this framework to the situation of pregnant women with PGP, the haunted women either choose a strategy to reveal their condition (i.e., the invisible pain) and hence risk additional stigma, such as doubt and distrust from others, or try to hide the condition for as long as possible so as to pass as normal, hence fulfilling the societal expectations of a pregnant woman. Most of our informants had to reveal their condition as it deteriorated (poor walking, increasing pain, etc.). Despite obvious symptoms, many experienced that some people questioned the extent of their pain and condition. We have previously described that midwives working at local health centres usually provide the initial support and counsel pregnant women with PGP. However, when uncharacteristic or vague symptoms of PGP are present, the midwives recognize that there may be doubts or distrust towards the accuracy of the condition of the pregnant woman
The findings of this study indicate a need for knowledge that will help improve the care provided for these women and also improve the understanding of PGP and its impact on pregnant women’s daily lives. This area needs to be investigated further using the views and experiences of pregnant women. Additionally, as the condition have an impact on the relationship with the partner of the affected women, investigations of how the condition of PGP is experienced from their partners’ view may further contribute to the knowledge of this field.