- Email: [email protected]
Deciding When It's Labor: The Experience of Women Who Have Received Antepartum Care at Home for Preterm Labor
CLINICAL RESEARCH
Deciding When It’s Labor: The Experience of Women Who Have Received Antepartum Care at Home for Preterm Labor Lynne Palmer and Elaine Carty
Objective: To describe how women who had received antepartum care at home for preterm labor managed subsequent episodes of preterm labor symptoms. Design: Grounded theory method. Setting: 2 Canadian antepartum home care programs. Participants: 12 women who received antepartum care at home for preterm labor that had been diagnosed in hospital prior to 34 weeks gestation. Results: The core psychosocial process was reconciling body knowledge and professional knowledge. Study participants reported knowing something’s not right and followed decision guides to seek help. If, when they returned to the hospital to see what’s going on, they felt dissonance between what their bodies were telling them (body knowledge) and what their health care providers were telling them (professional knowledge) an overriding tension developed between not wanting to take a risk for the baby versus not wanting to overreact. These women reestablished their baselines of nonthreatening symptoms at a higher level by setting a new normal to avoid the humiliation associated with appearing to overreact. Attempting to ignore recurring symptoms of preterm labor delayed help seeking and caused anxiety. Conclusions: To avoid delayed help seeking, nursing interventions should be geared to reducing anxiety and validating the experiences of women with recurring preterm labor symptoms. JOGNN, 35, 509-515; 2006. DOI: 10.1111/J.15526909.2006.00070.x Keywords: Antepartum care—Authoritative knowledge—Canada—Grounded theory—Maternal attitudes—Pregnancy—Pregnancy complications— Preterm/premature labor—Qualitative studies
Accepted: March 2006
Background Women’s experience of identifying a 1st episode of preterm labor has been described as a process dominated by “diagnostic confusion” (Patterson, Douglas, Patterson, & Bradle, 1992) and “uncertainty” (Weiss, Saks, & Harris, 2002), leading to a delay in help seeking. Previous researchers recommended improved education for both pregnant women and health care providers to increase sensitivity and response to the subtle symptoms of preterm labor and expedite access to appropriate care (Weiss et al., 2002). However, once symptoms are identified, it is challenging to predict whether preterm labor will progress to preterm birth. Algorithms are available to guide professionals to exclude a diagnosis of preterm labor and avoid unnecessary transport to tertiary facilities and administration of steroid and tocolytic medication (Iams, 2003). However, fetal fibronectin testing and endovaginal ultrasonography are not always available to follow these algorithms, and medical diagnosis of preterm labor remains illusive (Green et al., 2005). Experimental research has failed to confirm that any one marker can accurately identify preterm labor that will progress to preterm birth (Lockwood, 2002). Therefore, women who experience recurrent episodes of preterm labor symptoms without significant cervical changes face the ongoing responsibility of deciding when they should seek help. In Canada, antepartum care at home programs are becoming a popular substitute for hospital care for women with preterm labor symptoms (e.g., see,
© 2006, AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
JOGNN 509
Goulet et al., 2001; Harrison et al., 2001; Heaman, Dacombe, Thompson, Helewa, & Wiesner, 1995; Salvador et al., 2003; West, Palmer, & Tier, 2000). While receiving antepartum care at home, women with a diagnosis of preterm labor are visited twice weekly and telephoned daily by antepartum nurses. They are taught to carry out and document twice-daily contraction counts obtained by selfpalpation and attention to internal sensations accompanying increased uterine tone and to assess changes in vaginal discharge and fetal movement counts. These women are given clear help-seeking decision guides outlining when they should return to hospital for more intense surveillance. The purpose of the research presented in this study was to learn how women who had received antepartum care at home for preterm labor prior to 34 weeks gestation decided whether their symptoms represented preterm labor and what factors influenced their decisions to seek help or delay help seeking.
Literature Review Frequency of symptoms heralding the onset of preterm labor has been studied quantitatively with mixed results. Study participants recalled an increase in preterm labor symptoms from 7 days (Katz, Goodyear, & Creasy, 1990) to 24 hours preceding the diagnosis (Iams, Johnson, & Parker, 1994). Home uterine activity monitoring has been evaluated as a tool to identify the onset of preterm labor in several experimental studies (Devoe & Ware, 2000; Dyson et al., 1998; Iams et al., 2002) and was found to have a low positive predictive value for identification of preterm labor that led to preterm birth. Cervical length assessed by transvaginal ultrasonography was found to be the most sensitive and consistent predictor of preterm birth prior to 35 weeks gestation compared to home uterine activity monitoring or fetal fibronectin (Iams et al., 2002). However, cervical length had less than a 40% positive predictive value for preterm birth in the population studied. Iams (2003) offered a diagnostic algorithm that excludes a diagnosis of preterm labor based on fetal fibronectin and cervical length measured by transvaginal ultrasound. Iams estimated from the preterm labor literature that 97% to 99% of women with preterm labor symptoms, intact membranes, and cervical dilation less than 3 cm, will not progress to preterm birth before 34 to 35 weeks if they have a cervical length exceeding 30 mm on transvaginal ultrasound assessment or in 14 days when a fetal fibronectin test is negative. When these diagnostic tests are available, the algorithm is useful in reducing unnecessary intervention and hospitalization. However, it is unclear how women should manage subsequent episodes of preterm labor symptoms at home after discharge from the hospital. There have been four qualitative studies exploring the experiences of women related to a 1st episode of preterm labor. Patterson et al. (1992) developed a grounded theory 510 JOGNN
describing self-diagnostic confusion experienced by women in identifying preterm labor. Mackey and CosterSchulz (1992) described how women experience living with a diagnosis of preterm labor. Later these authors further described how women managed preterm labor in a “balancing act” (Coster-Schulz & Mackey, 1998). The investigators identified a “personal knowing” (p. 341) that something was wrong, but women did not seek help until their usual symptoms became more intense. Why do women doubt their inner knowledge? What prevents women from seeking professional help until all other avenues of help have been exhausted? Weiss et al. (2002) used grounded theory method to explore the uncertainty experienced by women with the onset of preterm labor symptoms. Their data reflected a process of “resolving the uncertainty of preterm labour symptoms,” supporting the findings of Patterson et al. (1992). These researchers recommended improved education that would enable pregnant women and professionals to recognize and interpret the subtle signs of preterm labor. Quasi-experimental program evaluations have demonstrated that antepartum home care is a safe and efficient alternative to hospitalization for Canadian women with a diagnosis of preterm labor (Harrison et al., 2001; Heaman et al., 1995; Janssen, 1997; Salvador et al., 2003). In one randomized controlled trial, gestational age at birth and birthweight of newborns whose mothers received antepartum care at home for preterm labor was compared to those whose mothers received in-hospital care for preterm labor (Goulet et al., 2001). No significant differences were found between the two groups indicating that surveillance in hospital by health care providers had no advantage over relying on women on the home care program to know when to return to hospital. However, it is not known how women who have received antepartum care at home for preterm labor identify a subsequent episode of preterm labor, or how they decide whether or not to seek help.
W
omen who experience recurrent episodes of preterm labor symptoms without significant cervical changes must decide when to seek help.
Methods Research Design Grounded theory method (Strauss & Corbin, 1998) was chosen as the research approach. Study participants were Volume 35, Number 4
recruited from two antepartum home care programs, one based in a tertiary care center and the other in a community hospital. Approval to conduct the study was obtained from the research review boards of both hospitals and from the university research ethics board. During regularly scheduled visits, antepartum home care nurses distributed study information letters to women who were eligible for the study because of their previous diagnosis of preterm labor that had been made in hospital prior to 34 weeks gestation. Interested women were visited at their homes to obtain consent and demographic data. Study participants were asked to telephone the researcher for an interview after they had experienced another episode of preterm labor or after the birth of their babies. Figure 1 illustrates the points at which recruitment and data collection occurred.
Sample Twenty-two women prospectively consented to participate in the study. Ten women were not interviewed because they did not experience a 2nd episode of preterm labor, or they declined to participate as their pregnancies progressed. Ten study participants were interviewed once, and two women were interviewed on two occasions to fulfill the theoretical needs of the study. The ages of participants ranged from 23 to 35 years with a mean age of 30 years. Four women had a grade 12 education, four had a postsecondary diploma or certificate, and four had a university degree. There were four nulliparous participants. Four multiparous women had previously experienced a preterm birth. Five women on the study gave birth prior to 37 weeks gestation.
Procedure One investigator conducted all audiotaped interviews and wrote field notes immediately following each interview. Interviews took place in a private room in the hospital or in participants’ homes and began with open-ended questions, such as, “Tell me about how you decided you needed to go to the hospital.” An interview guide of questions and probes was used to help the participants reflect about their experiences. As the theoretical needs of the study required exploration of specific concepts, more structured questions
1st episode of preterm labor → Antepartum care at home client
Study consent obtained & demographic form completed
were used. Self-kept symptom records were collected from women who experienced an episode of preterm labor, while receiving antepartum care at home.
Data Analysis Audiotaped interviews were transcribed and descriptive codes were applied to phrases describing what was happening from the participants’ perspectives. A constant comparative method of analysis was used as data were reviewed and grouped into categories and subcategories. Participants’ self-kept symptom records were examined for information related to decision making in identifying the onset of labor. Theoretical ideas were recorded in memos to describe properties, dimensions, and variations developed for each category, and to determine linkages between categories and factors that influenced change. Three experienced qualitative researchers critically appraised these ideas and agreement was reached. Diagrams were sketched to illustrate relationships between concepts. The diagrams were used as a visual tool to obtain feedback from study participants, and participants agreed that the final diagram represented their experiences. Once a core category was developed, the literature was revisited as a comparative template.
Results Women in the study decided if preterm labor symptoms represented “true labor” and warranted professional attention through a core process of reconciling body knowledge and professional knowledge. Figure 2 illustrates this potentially repetitive process. An overriding tension, between not wanting to take a risk for the baby and not wanting to overreact, permeated all stages of the process following the 1st occasion when study participants felt dissonance between their body knowledge and professional knowledge. One woman explained why reconciliation to professional knowledge was her only option to manage the incongruence between what she thought and what she was told: What you feel and what they [the doctors and nurses] see are so unbelievably different that the only possible
Birth
Data collection
Labor stopped
Data collection
Birth
Data collection
2nd episode of labor
FIGURE 1
Data collection flow chart.
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interior perceptions through daily self-assessments. Symptoms experienced in a previous episode of preterm labor without cervical changes were considered part of their “normal” baselines. They compared new or more intense symptoms to their baseline symptoms and felt certain about their decisions to follow antepartum help-seeking guidelines. Regardless of the advice they were given by their care providers, most of these women admitted that they would have insisted on hospital assessment. For instance I think I probably would have waited maybe another half-hour to an hour and then I think I would have called again and said, “I’m coming in now.” Study participants did not consult family or friends to help interpret symptom meaning. These women were confident in their body knowledge and thought that lay advice may conflict with “expert” guidance, complicating their decision making. One woman stated, “So the best way to deal with it is not to ‘press release’ it. Just to tell people that you need help from.”
W
omen reported noticing a sudden change that demanded their immediate attention when labor started.
FIGURE 2
Reconciling body knowledge and professional knowledge.
explanation is you’re a wuss or you’re crazy. There’s just too big a chasm between the two things, which is why I think they don’t believe you . . . it’s even worse than that . . . you start to doubt what you feel. And then how are you supposed to do that when what you feel is the only way that you’re supposed to know whether it’s the real deal? Reconciling body knowledge and professional knowledge is portrayed in the following description of the stages the women went through in their thoughts and decision making.
Knowing Something’s Not Right Without access to professional knowledge, women in the study used their body knowledge to decide whether they were in labor. After receiving antepartum care at home, these women had sharpened their awareness of 512 JOGNN
Women in the study reported noticing a sudden change that demanded their immediate attention when labor started. Study participants who had previously given birth prematurely or had experienced preterm labor with cervical changes were more sensitive to the onset of preterm labor symptoms. Rather than a vague or gradual onset, they reported precise starting points, such as, “So at 3:00 on Monday my stomach started tightening up . . . .” When study participants recognized a change from their baselines, they embarked on a thorough self-assessment to be knowledgeable about their situation. Time spent waiting to see if it stops differed between study participants depending on the degree of risk they perceived for their babies. For example, they waited longer at home if they lived nearby the hospital or if their babies were more than 34 weeks gestation.
Seeing What’s Going On Women in the study returned to the hospital to verify their body knowledge through objective assessment by professionals. They valued professional knowledge, often adopting medical jargon and referring to investigation results as proof of their experiences. One woman commented, “It was a big relief actually . . . to know for sure Volume 35, Number 4
that the pains that I was feeling were the uterus contracting.” These women perceived that professional attention was well deserved, and they were relieved to remain in hospital. However, if their interpretations of what their bodies were telling them (body knowledge) and what their health care providers were telling them (professional knowledge) did not coincide, an overriding tension developed between not wanting to take a risk for the baby and not wanting to overreact. These women felt intense humiliation and frustration that they had no proof of their experiences, “to say that I’m not bullshitting ya. This is what is happening to me, this is why I’m coming in.” This led to self-doubt, and they learned to “kind of mistrust” their bodies. Women in the study returned to the hospital expecting to be believed. They claimed they would not have gone to the hospital unless it was absolutely necessary, suggesting a sacrifice for the baby. When “nothing happened,” they felt guilty for “wasting everybody’s time” because “subconsciously we don’t want to cause trouble to others.” Some women in the study “secretly hoped” that cervical changes would be found on assessment to validate their experiences. This created more guilt because the baby was preterm. When women in the study were told that they were not in “true” preterm labor, they left the hospital wanting more information. They were perplexed at how the warning symptoms for which they had been watching had been “nothing.” They did not readily accept normalizing terms, such as “Braxton Hicks” or “tightenings” because these terms described their baseline symptoms. These women searched unsuccessfully for an explanation that fit their experiences, and they were puzzled with how to use their body knowledge in another episode of symptoms.
Setting a New Normal Women in the study adapted their plan to seek help by setting a new normal, meaning they would respond to future symptoms at a higher level that coincided with professional judgment. As they reconciled body knowledge and professional knowledge, their “new normal” was purposely set beyond the recommended antepartum helpseeking guidelines to avoid the humiliation associated with appearing to overreact. One woman explained, “Where I know that nothing’s changing, I know these pains are okay, so again let’s move the bar to this normal, and we’ll go from there.” Even visible signs of preterm labor fell within the new normal if they had been previously minimized by a professional. One participant decided not to go to the hospital at 36 weeks gestation when she experienced a large gush of amniotic fluid because “it was more of the same; it was the fluid thing . . . if it had been something different, we would have gone in.” This woman had previously gone to the hospital when her vaginal discharge had soaked several July/August 2006
peri-pads. Another woman ignored bloody show and delayed seeking help at 36 weeks until she was 4 cm dilated. She recalled, “. . . in the past, they were big gushes of blood and this was not a whole lot.” The conviction with which professionals interpreted investigations that measured internal change was perceived by study participants as the authority to proclaim what was true, and they established their new normal by relying on professional knowledge. Inconsistencies in medical management and interpretation of test results were noticed when “every doctor kind of does it differently, and the nurses do it differently,” yet, these women still conceded to the authority of professional knowledge over their body knowledge. Study participants did not want to give birth prematurely, but most admitted wanting to get it over with to escape the responsibility of deciding when to return to the hospital. One woman wanted “it over with” at 32 weeks so she would “not have to worry about something being inside [her].” After 34 weeks, some study participants were disappointed when their preterm labor did not progress because they no longer perceived a risk to the baby. They rationalized that physicians and nurses had assured them that “the baby would be fine” at that age. Women in the study believed that they would decide to seek help for subsequent episodes of preterm labor by trusting your gut. They did not want to take a risk for their babies and believed “that’s why it’s so important to trust your gut and not set those stupid extreme bars for yourself.” Although most study participants continued to rely on body knowledge to appraise symptoms after setting a new normal, their initial confidence faded, and the antepartum guidelines were no longer used to influence their decisions. These women could not “unlearn” their body knowledge, and they experienced considerable anxiety and uncertainty when they attempted to ignore symptoms included in their new normal. This led to two women denying that their symptoms represented labor, and they delayed seeking help. One woman was 4 cm dilated at 36 weeks gestation when she returned to the hospital, and the other woman had an unplanned home birth at 35 weeks.
Discussion Symptom recognition education and help-seeking decision guides provided by antepartum care at home program nurses enabled study participants to confidently identify 2nd episodes of preterm labor symptoms and return to hospital for further assessment. This differs from the confusion that some women experienced in identifying a 1st episode of preterm labor (Mackey & CosterSchulz, 1992; Patterson et al., 1992; Weiss et al., 2002), and it has potential to avoid adverse neonatal and maternal outcomes related to delayed help seeking. However, this education and support from antepartum home care JOGNN 513
nurses was nullified when, after 2nd assessment, these women felt dissonance between their body knowledge and professional knowledge. They struggled to make sense of the symptoms that prompted their return to hospital, but conceded to the authority of professional knowledge, resetting their baseline of acceptable symptoms beyond antepartum home care recommendations. Similarly, Weiss et al. observed that when professionals normalized women’s preterm labor symptoms, those women evaluated a subsequent episode of similar symptoms as equally harmless. Foucault (1973) traced historic conditions from the 18th century under which construction of privileged medical knowledge formed relationships of power and control for health care professionals over the patient. More recently, Jordan (1997) elaborated on the idea that “authoritative knowledge” is created through a social process that is accepted by the people of a particular culture. It is the knowledge that “counts” even though other legitimate ways of knowing exist within that culture. Childbearing women in North America generally value the technology that is linked to professional knowledge because it allows them to participate in the dominant cultural norms (DavisFloyd, 2003). Akin to this, study participants valued professional knowledge that communicated in a technologic world beyond their reach. Regardless of efforts by the antepartum home care nurses to educate and share knowledge with these women, they doubted their own experiences rather than challenge the authority of professional knowledge.
Implications for Nursing Practice and Research Although this study is limited by a small number of study participants, the experiences of these women have implications for nursing practice and research. To reinforce safe behavior, women should be commended for trusting their body knowledge and admired for vigilance in self-monitoring symptoms. Rather than focusing on only objective data that imply “falseness,” the truth of women’s body knowledge must be used to complement professional knowledge. Nurses should avoid demeaning terms, such as “false labor,” or normalizing labels for contractions, such as tightenings. By disclosing what professionals do not know and admitting the absence of an exact science to determine symptom meaning, women are more likely to believe that their input is valuable. Nurses can explain how labor often starts and stops, and that professionals may expect women to return to hospital several times to rule out progressive labor. Women do not have access to professional knowledge from their homes and it is, therefore, essential that they trust their body knowledge when they are responsible for deciding whether symptoms warrant return to hospital. 514 JOGNN
W
omen’s knowledge of their bodies must be used to complement professional knowledge.
Study participants found that professional explanations did not coincide with their experiences of preterm labor symptoms without progressive cervical dilation. Quantitative descriptive research is indicated to learn more about preterm labor symptoms that do not cause cervical changes. For example, little is known about what causes preterm labor symptoms to start and stop. Gestational age at birth has not been analyzed separately for women who experience recurrent episodes of preterm labor compared to those who experience only one episode of preterm labor. This information has potential to help women recognize that they are not alone in their experiences, to believe that professionals appreciate the reality of their symptoms, and to understand the possible outcomes related to their condition.
Acknowledgment Supported by the Sheena Davidson Nursing Research Fund and a bursary from the Xi Eta Chapter of Sigma Theta Tau. REFERENCES Coster-Schulz, M. A., & Mackey, M. C. (1998). The preterm labor experience: A balancing act. Clinical Nursing Research, 7, 335-362. Davis-Floyd, R. E. (2003). Birth as an American rite of passage (2nd ed.). Berkeley: University of California Press. Devoe, L., & Ware, D. (2000). Home uterine activity monitoring: A critical review [Clinical Problem Of Preterm Labor]. Clinical Obstetrics and Gynecology, 43, 778-786. Dyson, D. C., Danbe, K. H., Bamber, J. A., Crites, Y. M., Field, D. R., Maier, J. A., et al. (1998). Monitoring women at risk for preterm labor. New England Journal of Medicine, 338, 15-19. Foucault, M. (1973). The birth of the clinic: An archaeololgy of medical perception (A. M. S. Smith, Trans.). New York: Vintage. Goulet, C., Gevery, H., Lemay, M., Gauthier, R., Lepage, L., Fraser, W., et al. (2001). A randomized clinical trial of care for women with preterm labour: Home management versus hospital management. Canadian Medical Association Journal, 164, 985-991. Green, N., Damus, K., Simpson, J., Iams, J., Reece, E., Hobel, C., et al. (2005). Research agenda for preterm birth: Recommendations from the March of Dimes. American Journal of Obstetrics and Gynecology, 193, 623-635.
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Harrison, M., Kushner, K., Benzies, K., Kimak, C., Jacobs, P., & Mitchell, B. (2001). In-home nursing care for women with high-risk pregnancies: Outcomes and cost. Obstetrics & Gynecology, 97, 982-987. Heaman, M., Dacombe, L., Thompson, L., Helewa, M., & Wiesner, M. (1995). Report on the St. Boniface General Hospital/Manitoba Health Antenatal Home Care Program. Winnipeg, Canada: St. Boniface General Hospital/ Manitoba Health. Iams, J. (2003). Prediction and early detection of preterm labor. Obstetrics & Gynecology, 101, 402-412. Iams, J., Johnson, F., & Parker, M. (1994). A prospective evaluation of the signs and symptoms of preterm labor. Obstetrics and Gynecology, 84, 227-230. Iams, J., Newman, R., Thom, E., Goldenberg, R., MuellerHeubach, E., Moawad, A., et al. (2002). Frequency of uterine contractions and the risk of spontaneous preterm delivery. New England Journal of Medicine, 346, 250-255. Janssen, P. (1997). Antepartum home care program evaluation (ISBN 0-9682319-0-X). Vancouver, Canada: B.C. Women’s Hospital and Vancouver Richmond Health Board. Jordan, B. (1997). Authoritative knowledge and its construction. In C. F. Sargent (Ed.), Childbirth and authoritative knowledge: Cross-cultural perspectives. Berkeley: University of California Press, 56-61. Katz, M., Goodyear, K., & Creasy, R. (1990). Early signs and symptoms of preterm labor. American Journal of Obstetrics and Gynecology, 162, 1150-1153. Lockwood, C. J. (2002). Predicting premature delivery—No easy task. New England Journal of Medicine, 346, 282-284. Mackey, M. C., & Coster-Schulz, M. A. (1992). Women’s views of the preterm labor experience. Clinical Nursing Research, 1, 366-384.
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Patterson, E. T., Douglas, A. B., Patterson, P. M., & Bradle, J. B. (1992). Symptoms of preterm labor and self-diagnostic confusion. Nursing Research, 41, 367-372. Salvador, A., Davies, B., Fung Kee Fung, K., Clinch, J., Coyle, D., & Sweetman, A. (2003). Program evaluation of hospitalbased antenatal home care for high-risk women. Hospital Quarterly, 6, 67-73. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage. Weiss, M. E., Saks, N. P., & Harris, S. (2002). Resolving the uncertainty of preterm symptoms: Women’s experiences with the onset of preterm labor. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31, 66-76. West, C., Palmer, L., & Tier, T. (2000). No place like home. Canadian Nurse, 96, 32-34. Lynne Palmer, RN, MSN, provided antepartum care at home for 10 years and is now the clinical nurse specialist for the Maternal Program at Surrey Memorial Hospital in Surrey, British Columbia, Canada. Elaine Carty, RN, MSN, CNM, is the director of the Midwifery Program, Faculty of Medicine, and a professor for the School of Nursing at the University of British Columbia in Vancouver, British Columbia, Canada. Address for correspondence: Lynne Palmer, RN, MSN, Surrey Memorial Hospital, 13750 96th Avenue, Surrey, BC V3V 1Z2, Canada. E-mail: [email protected]
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Deciding When It’s Labor: The Experience of Women Who Have Received Antepartum Care at Home for Preterm Labor Lynne Palmer and Elaine Carty
Objective: To describe how women who had received antepartum care at home for preterm labor managed subsequent episodes of preterm labor symptoms. Design: Grounded theory method. Setting: 2 Canadian antepartum home care programs. Participants: 12 women who received antepartum care at home for preterm labor that had been diagnosed in hospital prior to 34 weeks gestation. Results: The core psychosocial process was reconciling body knowledge and professional knowledge. Study participants reported knowing something’s not right and followed decision guides to seek help. If, when they returned to the hospital to see what’s going on, they felt dissonance between what their bodies were telling them (body knowledge) and what their health care providers were telling them (professional knowledge) an overriding tension developed between not wanting to take a risk for the baby versus not wanting to overreact. These women reestablished their baselines of nonthreatening symptoms at a higher level by setting a new normal to avoid the humiliation associated with appearing to overreact. Attempting to ignore recurring symptoms of preterm labor delayed help seeking and caused anxiety. Conclusions: To avoid delayed help seeking, nursing interventions should be geared to reducing anxiety and validating the experiences of women with recurring preterm labor symptoms. JOGNN, 35, 509-515; 2006. DOI: 10.1111/J.15526909.2006.00070.x Keywords: Antepartum care—Authoritative knowledge—Canada—Grounded theory—Maternal attitudes—Pregnancy—Pregnancy complications— Preterm/premature labor—Qualitative studies
Accepted: March 2006
Background Women’s experience of identifying a 1st episode of preterm labor has been described as a process dominated by “diagnostic confusion” (Patterson, Douglas, Patterson, & Bradle, 1992) and “uncertainty” (Weiss, Saks, & Harris, 2002), leading to a delay in help seeking. Previous researchers recommended improved education for both pregnant women and health care providers to increase sensitivity and response to the subtle symptoms of preterm labor and expedite access to appropriate care (Weiss et al., 2002). However, once symptoms are identified, it is challenging to predict whether preterm labor will progress to preterm birth. Algorithms are available to guide professionals to exclude a diagnosis of preterm labor and avoid unnecessary transport to tertiary facilities and administration of steroid and tocolytic medication (Iams, 2003). However, fetal fibronectin testing and endovaginal ultrasonography are not always available to follow these algorithms, and medical diagnosis of preterm labor remains illusive (Green et al., 2005). Experimental research has failed to confirm that any one marker can accurately identify preterm labor that will progress to preterm birth (Lockwood, 2002). Therefore, women who experience recurrent episodes of preterm labor symptoms without significant cervical changes face the ongoing responsibility of deciding when they should seek help. In Canada, antepartum care at home programs are becoming a popular substitute for hospital care for women with preterm labor symptoms (e.g., see,
© 2006, AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
JOGNN 509
Goulet et al., 2001; Harrison et al., 2001; Heaman, Dacombe, Thompson, Helewa, & Wiesner, 1995; Salvador et al., 2003; West, Palmer, & Tier, 2000). While receiving antepartum care at home, women with a diagnosis of preterm labor are visited twice weekly and telephoned daily by antepartum nurses. They are taught to carry out and document twice-daily contraction counts obtained by selfpalpation and attention to internal sensations accompanying increased uterine tone and to assess changes in vaginal discharge and fetal movement counts. These women are given clear help-seeking decision guides outlining when they should return to hospital for more intense surveillance. The purpose of the research presented in this study was to learn how women who had received antepartum care at home for preterm labor prior to 34 weeks gestation decided whether their symptoms represented preterm labor and what factors influenced their decisions to seek help or delay help seeking.
Literature Review Frequency of symptoms heralding the onset of preterm labor has been studied quantitatively with mixed results. Study participants recalled an increase in preterm labor symptoms from 7 days (Katz, Goodyear, & Creasy, 1990) to 24 hours preceding the diagnosis (Iams, Johnson, & Parker, 1994). Home uterine activity monitoring has been evaluated as a tool to identify the onset of preterm labor in several experimental studies (Devoe & Ware, 2000; Dyson et al., 1998; Iams et al., 2002) and was found to have a low positive predictive value for identification of preterm labor that led to preterm birth. Cervical length assessed by transvaginal ultrasonography was found to be the most sensitive and consistent predictor of preterm birth prior to 35 weeks gestation compared to home uterine activity monitoring or fetal fibronectin (Iams et al., 2002). However, cervical length had less than a 40% positive predictive value for preterm birth in the population studied. Iams (2003) offered a diagnostic algorithm that excludes a diagnosis of preterm labor based on fetal fibronectin and cervical length measured by transvaginal ultrasound. Iams estimated from the preterm labor literature that 97% to 99% of women with preterm labor symptoms, intact membranes, and cervical dilation less than 3 cm, will not progress to preterm birth before 34 to 35 weeks if they have a cervical length exceeding 30 mm on transvaginal ultrasound assessment or in 14 days when a fetal fibronectin test is negative. When these diagnostic tests are available, the algorithm is useful in reducing unnecessary intervention and hospitalization. However, it is unclear how women should manage subsequent episodes of preterm labor symptoms at home after discharge from the hospital. There have been four qualitative studies exploring the experiences of women related to a 1st episode of preterm labor. Patterson et al. (1992) developed a grounded theory 510 JOGNN
describing self-diagnostic confusion experienced by women in identifying preterm labor. Mackey and CosterSchulz (1992) described how women experience living with a diagnosis of preterm labor. Later these authors further described how women managed preterm labor in a “balancing act” (Coster-Schulz & Mackey, 1998). The investigators identified a “personal knowing” (p. 341) that something was wrong, but women did not seek help until their usual symptoms became more intense. Why do women doubt their inner knowledge? What prevents women from seeking professional help until all other avenues of help have been exhausted? Weiss et al. (2002) used grounded theory method to explore the uncertainty experienced by women with the onset of preterm labor symptoms. Their data reflected a process of “resolving the uncertainty of preterm labour symptoms,” supporting the findings of Patterson et al. (1992). These researchers recommended improved education that would enable pregnant women and professionals to recognize and interpret the subtle signs of preterm labor. Quasi-experimental program evaluations have demonstrated that antepartum home care is a safe and efficient alternative to hospitalization for Canadian women with a diagnosis of preterm labor (Harrison et al., 2001; Heaman et al., 1995; Janssen, 1997; Salvador et al., 2003). In one randomized controlled trial, gestational age at birth and birthweight of newborns whose mothers received antepartum care at home for preterm labor was compared to those whose mothers received in-hospital care for preterm labor (Goulet et al., 2001). No significant differences were found between the two groups indicating that surveillance in hospital by health care providers had no advantage over relying on women on the home care program to know when to return to hospital. However, it is not known how women who have received antepartum care at home for preterm labor identify a subsequent episode of preterm labor, or how they decide whether or not to seek help.
W
omen who experience recurrent episodes of preterm labor symptoms without significant cervical changes must decide when to seek help.
Methods Research Design Grounded theory method (Strauss & Corbin, 1998) was chosen as the research approach. Study participants were Volume 35, Number 4
recruited from two antepartum home care programs, one based in a tertiary care center and the other in a community hospital. Approval to conduct the study was obtained from the research review boards of both hospitals and from the university research ethics board. During regularly scheduled visits, antepartum home care nurses distributed study information letters to women who were eligible for the study because of their previous diagnosis of preterm labor that had been made in hospital prior to 34 weeks gestation. Interested women were visited at their homes to obtain consent and demographic data. Study participants were asked to telephone the researcher for an interview after they had experienced another episode of preterm labor or after the birth of their babies. Figure 1 illustrates the points at which recruitment and data collection occurred.
Sample Twenty-two women prospectively consented to participate in the study. Ten women were not interviewed because they did not experience a 2nd episode of preterm labor, or they declined to participate as their pregnancies progressed. Ten study participants were interviewed once, and two women were interviewed on two occasions to fulfill the theoretical needs of the study. The ages of participants ranged from 23 to 35 years with a mean age of 30 years. Four women had a grade 12 education, four had a postsecondary diploma or certificate, and four had a university degree. There were four nulliparous participants. Four multiparous women had previously experienced a preterm birth. Five women on the study gave birth prior to 37 weeks gestation.
Procedure One investigator conducted all audiotaped interviews and wrote field notes immediately following each interview. Interviews took place in a private room in the hospital or in participants’ homes and began with open-ended questions, such as, “Tell me about how you decided you needed to go to the hospital.” An interview guide of questions and probes was used to help the participants reflect about their experiences. As the theoretical needs of the study required exploration of specific concepts, more structured questions
1st episode of preterm labor → Antepartum care at home client
Study consent obtained & demographic form completed
were used. Self-kept symptom records were collected from women who experienced an episode of preterm labor, while receiving antepartum care at home.
Data Analysis Audiotaped interviews were transcribed and descriptive codes were applied to phrases describing what was happening from the participants’ perspectives. A constant comparative method of analysis was used as data were reviewed and grouped into categories and subcategories. Participants’ self-kept symptom records were examined for information related to decision making in identifying the onset of labor. Theoretical ideas were recorded in memos to describe properties, dimensions, and variations developed for each category, and to determine linkages between categories and factors that influenced change. Three experienced qualitative researchers critically appraised these ideas and agreement was reached. Diagrams were sketched to illustrate relationships between concepts. The diagrams were used as a visual tool to obtain feedback from study participants, and participants agreed that the final diagram represented their experiences. Once a core category was developed, the literature was revisited as a comparative template.
Results Women in the study decided if preterm labor symptoms represented “true labor” and warranted professional attention through a core process of reconciling body knowledge and professional knowledge. Figure 2 illustrates this potentially repetitive process. An overriding tension, between not wanting to take a risk for the baby and not wanting to overreact, permeated all stages of the process following the 1st occasion when study participants felt dissonance between their body knowledge and professional knowledge. One woman explained why reconciliation to professional knowledge was her only option to manage the incongruence between what she thought and what she was told: What you feel and what they [the doctors and nurses] see are so unbelievably different that the only possible
Birth
Data collection
Labor stopped
Data collection
Birth
Data collection
2nd episode of labor
FIGURE 1
Data collection flow chart.
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interior perceptions through daily self-assessments. Symptoms experienced in a previous episode of preterm labor without cervical changes were considered part of their “normal” baselines. They compared new or more intense symptoms to their baseline symptoms and felt certain about their decisions to follow antepartum help-seeking guidelines. Regardless of the advice they were given by their care providers, most of these women admitted that they would have insisted on hospital assessment. For instance I think I probably would have waited maybe another half-hour to an hour and then I think I would have called again and said, “I’m coming in now.” Study participants did not consult family or friends to help interpret symptom meaning. These women were confident in their body knowledge and thought that lay advice may conflict with “expert” guidance, complicating their decision making. One woman stated, “So the best way to deal with it is not to ‘press release’ it. Just to tell people that you need help from.”
W
omen reported noticing a sudden change that demanded their immediate attention when labor started.
FIGURE 2
Reconciling body knowledge and professional knowledge.
explanation is you’re a wuss or you’re crazy. There’s just too big a chasm between the two things, which is why I think they don’t believe you . . . it’s even worse than that . . . you start to doubt what you feel. And then how are you supposed to do that when what you feel is the only way that you’re supposed to know whether it’s the real deal? Reconciling body knowledge and professional knowledge is portrayed in the following description of the stages the women went through in their thoughts and decision making.
Knowing Something’s Not Right Without access to professional knowledge, women in the study used their body knowledge to decide whether they were in labor. After receiving antepartum care at home, these women had sharpened their awareness of 512 JOGNN
Women in the study reported noticing a sudden change that demanded their immediate attention when labor started. Study participants who had previously given birth prematurely or had experienced preterm labor with cervical changes were more sensitive to the onset of preterm labor symptoms. Rather than a vague or gradual onset, they reported precise starting points, such as, “So at 3:00 on Monday my stomach started tightening up . . . .” When study participants recognized a change from their baselines, they embarked on a thorough self-assessment to be knowledgeable about their situation. Time spent waiting to see if it stops differed between study participants depending on the degree of risk they perceived for their babies. For example, they waited longer at home if they lived nearby the hospital or if their babies were more than 34 weeks gestation.
Seeing What’s Going On Women in the study returned to the hospital to verify their body knowledge through objective assessment by professionals. They valued professional knowledge, often adopting medical jargon and referring to investigation results as proof of their experiences. One woman commented, “It was a big relief actually . . . to know for sure Volume 35, Number 4
that the pains that I was feeling were the uterus contracting.” These women perceived that professional attention was well deserved, and they were relieved to remain in hospital. However, if their interpretations of what their bodies were telling them (body knowledge) and what their health care providers were telling them (professional knowledge) did not coincide, an overriding tension developed between not wanting to take a risk for the baby and not wanting to overreact. These women felt intense humiliation and frustration that they had no proof of their experiences, “to say that I’m not bullshitting ya. This is what is happening to me, this is why I’m coming in.” This led to self-doubt, and they learned to “kind of mistrust” their bodies. Women in the study returned to the hospital expecting to be believed. They claimed they would not have gone to the hospital unless it was absolutely necessary, suggesting a sacrifice for the baby. When “nothing happened,” they felt guilty for “wasting everybody’s time” because “subconsciously we don’t want to cause trouble to others.” Some women in the study “secretly hoped” that cervical changes would be found on assessment to validate their experiences. This created more guilt because the baby was preterm. When women in the study were told that they were not in “true” preterm labor, they left the hospital wanting more information. They were perplexed at how the warning symptoms for which they had been watching had been “nothing.” They did not readily accept normalizing terms, such as “Braxton Hicks” or “tightenings” because these terms described their baseline symptoms. These women searched unsuccessfully for an explanation that fit their experiences, and they were puzzled with how to use their body knowledge in another episode of symptoms.
Setting a New Normal Women in the study adapted their plan to seek help by setting a new normal, meaning they would respond to future symptoms at a higher level that coincided with professional judgment. As they reconciled body knowledge and professional knowledge, their “new normal” was purposely set beyond the recommended antepartum helpseeking guidelines to avoid the humiliation associated with appearing to overreact. One woman explained, “Where I know that nothing’s changing, I know these pains are okay, so again let’s move the bar to this normal, and we’ll go from there.” Even visible signs of preterm labor fell within the new normal if they had been previously minimized by a professional. One participant decided not to go to the hospital at 36 weeks gestation when she experienced a large gush of amniotic fluid because “it was more of the same; it was the fluid thing . . . if it had been something different, we would have gone in.” This woman had previously gone to the hospital when her vaginal discharge had soaked several July/August 2006
peri-pads. Another woman ignored bloody show and delayed seeking help at 36 weeks until she was 4 cm dilated. She recalled, “. . . in the past, they were big gushes of blood and this was not a whole lot.” The conviction with which professionals interpreted investigations that measured internal change was perceived by study participants as the authority to proclaim what was true, and they established their new normal by relying on professional knowledge. Inconsistencies in medical management and interpretation of test results were noticed when “every doctor kind of does it differently, and the nurses do it differently,” yet, these women still conceded to the authority of professional knowledge over their body knowledge. Study participants did not want to give birth prematurely, but most admitted wanting to get it over with to escape the responsibility of deciding when to return to the hospital. One woman wanted “it over with” at 32 weeks so she would “not have to worry about something being inside [her].” After 34 weeks, some study participants were disappointed when their preterm labor did not progress because they no longer perceived a risk to the baby. They rationalized that physicians and nurses had assured them that “the baby would be fine” at that age. Women in the study believed that they would decide to seek help for subsequent episodes of preterm labor by trusting your gut. They did not want to take a risk for their babies and believed “that’s why it’s so important to trust your gut and not set those stupid extreme bars for yourself.” Although most study participants continued to rely on body knowledge to appraise symptoms after setting a new normal, their initial confidence faded, and the antepartum guidelines were no longer used to influence their decisions. These women could not “unlearn” their body knowledge, and they experienced considerable anxiety and uncertainty when they attempted to ignore symptoms included in their new normal. This led to two women denying that their symptoms represented labor, and they delayed seeking help. One woman was 4 cm dilated at 36 weeks gestation when she returned to the hospital, and the other woman had an unplanned home birth at 35 weeks.
Discussion Symptom recognition education and help-seeking decision guides provided by antepartum care at home program nurses enabled study participants to confidently identify 2nd episodes of preterm labor symptoms and return to hospital for further assessment. This differs from the confusion that some women experienced in identifying a 1st episode of preterm labor (Mackey & CosterSchulz, 1992; Patterson et al., 1992; Weiss et al., 2002), and it has potential to avoid adverse neonatal and maternal outcomes related to delayed help seeking. However, this education and support from antepartum home care JOGNN 513
nurses was nullified when, after 2nd assessment, these women felt dissonance between their body knowledge and professional knowledge. They struggled to make sense of the symptoms that prompted their return to hospital, but conceded to the authority of professional knowledge, resetting their baseline of acceptable symptoms beyond antepartum home care recommendations. Similarly, Weiss et al. observed that when professionals normalized women’s preterm labor symptoms, those women evaluated a subsequent episode of similar symptoms as equally harmless. Foucault (1973) traced historic conditions from the 18th century under which construction of privileged medical knowledge formed relationships of power and control for health care professionals over the patient. More recently, Jordan (1997) elaborated on the idea that “authoritative knowledge” is created through a social process that is accepted by the people of a particular culture. It is the knowledge that “counts” even though other legitimate ways of knowing exist within that culture. Childbearing women in North America generally value the technology that is linked to professional knowledge because it allows them to participate in the dominant cultural norms (DavisFloyd, 2003). Akin to this, study participants valued professional knowledge that communicated in a technologic world beyond their reach. Regardless of efforts by the antepartum home care nurses to educate and share knowledge with these women, they doubted their own experiences rather than challenge the authority of professional knowledge.
Implications for Nursing Practice and Research Although this study is limited by a small number of study participants, the experiences of these women have implications for nursing practice and research. To reinforce safe behavior, women should be commended for trusting their body knowledge and admired for vigilance in self-monitoring symptoms. Rather than focusing on only objective data that imply “falseness,” the truth of women’s body knowledge must be used to complement professional knowledge. Nurses should avoid demeaning terms, such as “false labor,” or normalizing labels for contractions, such as tightenings. By disclosing what professionals do not know and admitting the absence of an exact science to determine symptom meaning, women are more likely to believe that their input is valuable. Nurses can explain how labor often starts and stops, and that professionals may expect women to return to hospital several times to rule out progressive labor. Women do not have access to professional knowledge from their homes and it is, therefore, essential that they trust their body knowledge when they are responsible for deciding whether symptoms warrant return to hospital. 514 JOGNN
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omen’s knowledge of their bodies must be used to complement professional knowledge.
Study participants found that professional explanations did not coincide with their experiences of preterm labor symptoms without progressive cervical dilation. Quantitative descriptive research is indicated to learn more about preterm labor symptoms that do not cause cervical changes. For example, little is known about what causes preterm labor symptoms to start and stop. Gestational age at birth has not been analyzed separately for women who experience recurrent episodes of preterm labor compared to those who experience only one episode of preterm labor. This information has potential to help women recognize that they are not alone in their experiences, to believe that professionals appreciate the reality of their symptoms, and to understand the possible outcomes related to their condition.
Acknowledgment Supported by the Sheena Davidson Nursing Research Fund and a bursary from the Xi Eta Chapter of Sigma Theta Tau. REFERENCES Coster-Schulz, M. A., & Mackey, M. C. (1998). The preterm labor experience: A balancing act. Clinical Nursing Research, 7, 335-362. Davis-Floyd, R. E. (2003). Birth as an American rite of passage (2nd ed.). Berkeley: University of California Press. Devoe, L., & Ware, D. (2000). Home uterine activity monitoring: A critical review [Clinical Problem Of Preterm Labor]. Clinical Obstetrics and Gynecology, 43, 778-786. Dyson, D. C., Danbe, K. H., Bamber, J. A., Crites, Y. M., Field, D. R., Maier, J. A., et al. (1998). Monitoring women at risk for preterm labor. New England Journal of Medicine, 338, 15-19. Foucault, M. (1973). The birth of the clinic: An archaeololgy of medical perception (A. M. S. Smith, Trans.). New York: Vintage. Goulet, C., Gevery, H., Lemay, M., Gauthier, R., Lepage, L., Fraser, W., et al. (2001). A randomized clinical trial of care for women with preterm labour: Home management versus hospital management. Canadian Medical Association Journal, 164, 985-991. Green, N., Damus, K., Simpson, J., Iams, J., Reece, E., Hobel, C., et al. (2005). Research agenda for preterm birth: Recommendations from the March of Dimes. American Journal of Obstetrics and Gynecology, 193, 623-635.
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Harrison, M., Kushner, K., Benzies, K., Kimak, C., Jacobs, P., & Mitchell, B. (2001). In-home nursing care for women with high-risk pregnancies: Outcomes and cost. Obstetrics & Gynecology, 97, 982-987. Heaman, M., Dacombe, L., Thompson, L., Helewa, M., & Wiesner, M. (1995). Report on the St. Boniface General Hospital/Manitoba Health Antenatal Home Care Program. Winnipeg, Canada: St. Boniface General Hospital/ Manitoba Health. Iams, J. (2003). Prediction and early detection of preterm labor. Obstetrics & Gynecology, 101, 402-412. Iams, J., Johnson, F., & Parker, M. (1994). A prospective evaluation of the signs and symptoms of preterm labor. Obstetrics and Gynecology, 84, 227-230. Iams, J., Newman, R., Thom, E., Goldenberg, R., MuellerHeubach, E., Moawad, A., et al. (2002). Frequency of uterine contractions and the risk of spontaneous preterm delivery. New England Journal of Medicine, 346, 250-255. Janssen, P. (1997). Antepartum home care program evaluation (ISBN 0-9682319-0-X). Vancouver, Canada: B.C. Women’s Hospital and Vancouver Richmond Health Board. Jordan, B. (1997). Authoritative knowledge and its construction. In C. F. Sargent (Ed.), Childbirth and authoritative knowledge: Cross-cultural perspectives. Berkeley: University of California Press, 56-61. Katz, M., Goodyear, K., & Creasy, R. (1990). Early signs and symptoms of preterm labor. American Journal of Obstetrics and Gynecology, 162, 1150-1153. Lockwood, C. J. (2002). Predicting premature delivery—No easy task. New England Journal of Medicine, 346, 282-284. Mackey, M. C., & Coster-Schulz, M. A. (1992). Women’s views of the preterm labor experience. Clinical Nursing Research, 1, 366-384.
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Patterson, E. T., Douglas, A. B., Patterson, P. M., & Bradle, J. B. (1992). Symptoms of preterm labor and self-diagnostic confusion. Nursing Research, 41, 367-372. Salvador, A., Davies, B., Fung Kee Fung, K., Clinch, J., Coyle, D., & Sweetman, A. (2003). Program evaluation of hospitalbased antenatal home care for high-risk women. Hospital Quarterly, 6, 67-73. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Newbury Park, CA: Sage. Weiss, M. E., Saks, N. P., & Harris, S. (2002). Resolving the uncertainty of preterm symptoms: Women’s experiences with the onset of preterm labor. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31, 66-76. West, C., Palmer, L., & Tier, T. (2000). No place like home. Canadian Nurse, 96, 32-34. Lynne Palmer, RN, MSN, provided antepartum care at home for 10 years and is now the clinical nurse specialist for the Maternal Program at Surrey Memorial Hospital in Surrey, British Columbia, Canada. Elaine Carty, RN, MSN, CNM, is the director of the Midwifery Program, Faculty of Medicine, and a professor for the School of Nursing at the University of British Columbia in Vancouver, British Columbia, Canada. Address for correspondence: Lynne Palmer, RN, MSN, Surrey Memorial Hospital, 13750 96th Avenue, Surrey, BC V3V 1Z2, Canada. E-mail: [email protected]
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