Abstract
Objective
Research suggests that grief after reproductive loss can become a complicated form of grief that persists over time and disrupts daily living. Our goal in the present study was to investigate the wording of items on a previously studied tool, the Reproductive Grief Screen, that could be used to screen patients for complicated grief.
Methods
We analyzed data from 27 qualitative interviews and 282 survey respondents to assess the opinions of women who had experienced reproductive loss about the wording of each item on the screening tool.
Results
Results confirmed that the language in three of the five items was problematic (i.e., triggering, confusing, or too wordy), requiring revision. Two of the three revised items were supported, but the third item wording still did not reach agreement.
Conclusion
Participants were sensitive to the language used in the initial version of the reproductive screening tool. One item still needs additional clarification before determination of the optimal wording.
Innovation
Including women who have experienced reproductive loss and grief in the development of a new reproductive grief screening survey is a novel approach for creating and refining a clinical tool. Additionally, using chi-square item testing as part of early scale development offers an alternative to correlational approaches. Findings suggest that the new screening tool is necessary for modernizing the standard of care provided to women who experience reproductive loss and to identify those with complicated grief after reproductive loss in a manner that is compassionate and sensitive to patients' needs.
Keywords: Complicated grief, Reproductive loss, Screening tool
Highlights
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The Reproductive Grief Screen confirmed women's experiences with complicated grief.
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Women identified problems with RGS items and offered suggestions for improvement.
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Incorporating women's feedback into the RGS will ensure sensitivity to patients.
1. Introduction
Every year, millions of women in the United States experience some type of pregnancy loss, including miscarriage, stillbirth, selective reduction, and termination [1]. This can lead to several potentially negative health outcomes if women experience, and do not receive treatment for, maladaptive grief reactions [2]. It is important then to effectively and compassionately screen women for grief so that they (1) are not retraumatized and (2) receive the care they need.
1.1. Health outcomes
Reproductive losses, particularly of a desired pregnancy, have been associated with anxiety, depression, and even post-traumatic stress in some women [3]. This can be part of complicated grief, which occurs when these symptoms of excessive worry, depression, and/or hyperarousal affect a woman and her daily living after experiencing a loss for a period of time much longer than expected [4]. In fact, women have reported grief symptoms following a pregnancy loss several years after a loss [2].
Additionally, untreated symptoms of complicated grief can lead to physical health conditions such as cardiovascular disease, cancer, and high blood pressure as well as behaviors like substance use and even suicide [5]. However, grief following pregnancy loss is still stigmatized, which can delay treatment. It is important then to assess women's mental health status periodically following a loss to be able to provide holistic care.
1.2. Grief screening tools
Health care providers are well-versed in using the 10-item Edinburgh Postnatal Depression Scale (EPDS) to assess postpartum women [6]; however, this scale is not designed to assess complicated grief following pregnancy loss and may, in fact, disenfranchise or traumatize women because the item wording references being pregnant and recently giving birth [7]. However, because there is not a validated alternative, it is still commonly used with patients who have experienced reproductive loss [7]. The 33-item Perinatal Grief Scale (PGS) was developed to target this specific population, but it is rarely used in health care settings due to the amount of time it takes to complete [7,8]. To address lengthy grief assessments, a group of health care providers and patient advocates developed the Brief Grief Questionnaire (BGQ), which is a validated 5-item scale used to screen individuals who are grieving the loss of a loved one [9]. Still, the context is not specific to reproductive loss, and thus, we adapted the original BGQ to this specific target population to create the Reproductive Grief Screen (RGS) [7,10].
1.3. Study purpose
Because reproductive loss is a prevalent experience that has the potential to be traumatic, leading to complicated grief [2], it is important to identify women experiencing this type of grief so that they may receive care. Previous phases of this research have demonstrated that the RGS is internally consistent, meets preliminary criteria for discriminant validity [7], and validates women's experiences following reproductive loss [10], showing its potential as a useful tool to screen for complicated grief. Still, screening for complicated grief after a reproductive loss should be approached with care and empathy. It is essential that the wording of assessment items be thoughtfully crafted to prevent additional trauma. The goal of the current phase of this multi-phase study then was to refine the items in the RGS to determine optimal wording using both qualitative and quantitative approaches to assess patient preferences. Planned future phases of this project will build on the current study to confirm reliability and validity of the tool, but finalizing the appropriate wording for each item was necessary before moving to these phases.
2. Methods
2.1. Participants
After receiving institutional review board approval, we recruited women who had experienced reproductive loss for the qualitative portion of the study using online postings to reproductive loss support websites, contacts at the Institute of Reproductive Grief Care, and social media sites, including Instagram, Facebook, and LinkedIn. Twenty-three women (85.2%) participated in a group interview with other women who had similar types of reproductive loss. Fourteen of those women (51.9%) participated in one of four miscarriage focus groups, and nine women (33.3%) participated in one of three stillbirth focus groups. Additionally, 4 women (14.8%) who had an abortion participated in an individual interview. See Table 1 for demographic information of interviewees.
Table 1.
Demographic characteristics of interview and focus group participants (N = 27)a.
| Type of loss (number) | Abortion (4) | Miscarriage (14) | Stillbirth (9b) |
|---|---|---|---|
| Current Age (Years) | |||
| Mean | 61 | 35.8 | 37.1 |
| Range | 49–74 | 21–52 | 30–44 |
| Number of losses | |||
| Mean | 1 | 4 | 1.2 |
| Mode | 1 | 2 | 1 |
| Range | 1 | 1–15 | 1–2 |
| Age at Time of Loss (Years) | |||
| Mean | 27 | 33.3 | 33.3 |
| Range | 16–36 | 17–50 | 20–43 |
| Time Since Loss | |||
| Mean | 33.75 years | 2.7 yearsc | 3.9 years |
| Range | 12–45 years | 1 day - 8 years | 5 months - 12 years |
| Race (Ethnicity) | |||
| White (Non-Hispanic/Latinx) | 2 (50.0%) | 9 (64.3%) | 8 (88.9%) |
| White (Hispanic/Latinx) | 1 (25.0%) | 1 (7.1%) | 1 (11.1%) |
| Black (Non-Hispanic/Latinx) | 0 | 2 (14.3%) | 0 |
| Asian (Non-Hispanic/Latinx) | 1 (25.0%) | 0 | 0 |
| Other (Hispanic/Latinx) | 0 | 2 (14.3%) | 0 |
Note. Additional demographic data available from [10].
Demographic data are presented based on participant type of loss.
Two women had experienced two stillbirths, three women also had a miscarriage, and one woman also had a miscarriage and abortion.
This mean does not include three women who had experienced a miscarriage one day, one week, and two weeks prior to the focus group. When including their time since loss, the mean is skewed to 2.6 months.
We used a similar recruitment strategy for the survey portion of the study, again posting to support sites, using contacts at the Institute, and posting to social media sites. Survey participants included 282 women who experienced a miscarriage (n = 153, 54.3%), abortion (n = 90, 31.9%), stillbirth (n = 26, 9.2%), or more than one type of loss (n = 13, 4.7%). See Table 2 for demographic information of survey respondents.
Table 2.
Demographic characteristics of survey participants (N = 282).
| Characteristic | Number (%) |
|---|---|
| Age (M = 31.47 years)a | |
| 22–29 | 147 (52.1%) |
| 30–39 | 93 (33.0%) |
| 40–49 | 21 (7.4%) |
| 50–59 | 11 (3.9%) |
| 60–69 | 3 (1.1%) |
| 74 | 1 (0.4%) |
| Type of Loss | |
| Abortion | 90 (31.9%) |
| Miscarriage | 153 (54.3%) |
| Stillbirth | 26 (9.2%) |
| Abortion & Miscarriage | 5 (1.8%) |
| Abortion & Stillbirth | 1 (0.4%) |
| Miscarriage & Stillbirth | 7 (2.5%) |
| Number of Losses | |
| 1 | 269 (94.7%) |
| 2 | 13 (4.6%) |
| Age at Time of Loss (Years)b | |
| Mean (Range) | 26.5 (16–50) |
| Time Since Lossc | |
| Mean (Range) | 4.5 years (3 months – 43 years) |
| Raced | |
| American Indian or Alaska Native | 14 (5.0%) |
| Asian | 9 (3.2%) |
| Black or African American | 27 (9.6%) |
| Mixed Race | 3 (1.2%) |
| Native Hawaiian or Other Pacific Islander | 5 (1.8%) |
| Other | 4 (1.4%) |
| White | 218 (77.3%) |
| Ethnicitye | |
| Hispanic/Latinx | 93 (33.0%) |
| Non-Hispanic/Latinx | 183 (64.9%) |
Note. Additional demographic data available from [10].
Five participants did not report age.
One participant did not report age at time of loss.
Five participants did not report time since loss, and two participants stated “long time ago” so they are not included in the mean and range.
Two participants did not report race.
Six participants did not report ethnicity.
2.2. Data collection
One researcher screened all inquiries and scheduled eligible participants for an online interview with another researcher who conducted all interviews via Zoom videoconferencing. During interviews, participants reviewed the RGS [7] and provided feedback about scale items. After the interviews, we emailed participants a $50 electronic gift card to a national retailer for their participation.
At the conclusion of the interview phase of the study, we designed a survey based on interviewees' feedback, hosted on the Qualtrics platform, that we administered to a larger sample of women to obtain more generalizable results. We wanted to determine preferred question wording, so respondents were given three wording options for each question, as well as an option to provide their own wording. Wording options included the original RGS wording [7] and two alternatives derived from the qualitative interview data. At the conclusion of the survey, participants were invited to submit their email address, separate from their responses, to be entered into a drawing to receive one of thirty $25 electronic gift cards to a national retailer. After the survey closed, we cleaned the data to remove unusable data (e.g., bot-generated responses, incomplete surveys) before conducting statistical analysis. To maintain the integrity of the data, we added safeguards to discourage machine-generated responses and discarded any surveys that failed those tests (e.g., scoring less than 0.8 on reCaptcha bot detector, incorrectly identifying an image halfway through the survey).
2.3. Data analysis
To analyze the interview data, two members of the research team reviewed all Zoom-generated transcripts to familiarize themselves with the data, correct any errors, and add pseudonyms before systematic coding. The first step in the thematic analysis involved open coding [11]. After identifying initial themes from this primary-cycle coding, we created a codebook that we used for secondary-cycle coding [12]. Members of the larger team met regularly to discuss emergent themes to verify the trustworthiness of our data analysis.
After analyzing the interview data, we performed descriptive statistics on demographic data (e.g., current age and age at the time of the reproductive loss, race, ethnicity) to assess frequencies of characteristics of the sample and chi-square tests of independence to examine relationships between different variables (e.g., type of reproductive loss, number of losses, time since the loss) and screening tool preferences in the survey data.
3. Results
Women who participated in interviews discussed the need for communication about pregnancy loss and saw potential for the RGS to be useful for assessing complicated grief. They appreciated the concise nature of the screening tool and, in general, felt that the five items confirmed their own experiences but warned that some of the questions could be traumatizing. They were in agreement about the clarity and usefulness of two items (items 3 and 5) and offered specific feedback for the wording of three of the screening tool items, which we then used in the larger survey to gain a better understanding of women's preferences. Data about the three problematic items are discussed below.
3.1. Triggering language
The majority of feedback about item wording overwhelmingly focused on the first screening tool question. Several women disliked the wording of the first item, which inquired about how well they were “accepting” the loss. Joceyln said,
I can't get over the first question. And I really honestly hate the wording of “are you…how are you doing accepting the loss?” That's awful wording, and if I had a tool that said that, especially as the first question, I would not fill this out. I would be very frustrated at this.
Others echoed her concern saying things like “something about that word is triggering … and it feels kind of dismissive” (Holly) or “[it] feels a bit negative…I mean even after 8 years, I mean, I accept it, but you know, it's not happily” (Mandy). Women even questioned the purpose of the question. For example, Mandy asked, “is the question about coping with your loss?” To which Kathryn replied, “Yeah I think the term ‘coping with’ might work better there. It's really what you're trying to get at, aren't you? Like, ‘is this person okay? Are they going to be okay?’”
Participants in the survey were asked about the original RGS question that used the word “accepting,” along with two suggestions from interview participants: “adjusting” and “coping.” More than half of the women who completed the survey (55.3%) also preferred the term “coping,” and “accepting” was the least preferred (16.3%; see Table 3). The type of loss, χ2(20, N = 282) = 25.00, p = .20, and the number of losses, χ2(4, N = 282) = 5.67, p = .23, were not significantly associated with “acceptance” wording preferences. However, a relationship between time since loss and wording preferences was statistically significant χ2(24, N = 277) = 41.30, p < .05. For individuals who had experienced a loss within the previous 20 years, “coping” is the preferred term. For those whose loss had been more than 20 years, “adjusting” is the preferred term. No one preferred “accepting.”
Table 3.
Survey respondents' item 1 wording preferences.
| Question | Number | Percentage |
|---|---|---|
| How much are you having trouble coping with your loss? | 156 | 55.3% |
| How much are you having trouble adjusting to your loss? | 60 | 21.3% |
| How much are you having trouble accepting your loss?a | 46 | 16.3% |
| Otherb | 16 | 5.7% |
| No response | 4 | 1.4% |
Wording in original RGS.
Nearly all of the alternative suggestions focused on first assessing if there was “trouble” and then asking how one was “coping” or “being affected” by the loss.
3.2. Unclear language
Some women were confused by the wording of the second item, which asked about respondents' “emotional response” to the loss. Participants were unsure of what this term was referencing, and therefore, recommended more clarity. For example, May said, “You don't know how to answer the question ‘how much does your emotional response interfere with your life?’ … What do you mean ‘emotional response’?”
Interviewees suggested “feelings” or “grief” as better alternatives to “emotional response;” hence, survey participants were asked to respond to those three terms. Survey respondents agreed that “emotional response” was the least preferred wording (20.6%), and instead, respondents preferred to use the word “grief” (48.9%; see Table 4). The type of loss, χ2(20, N = 282) = 24.57, p = .22, and the number of losses, χ2(4, N = 282) = 1.57, p = .82, were not significantly associated with “emotion” wording preferences. However, a relationship between time since loss and wording preferences was statistically significant χ2(24, N = 277) = 55.17, p < .001. For individuals who had experienced a loss more than a year ago, “grief” is the preferred term. For those whose loss was less than a year, “feelings” is the preferred term. No one preferred “emotional response.” Overall, the term “emotional response” is too vague, and participants were not clear how to respond to this item.
Table 4.
Survey respondents' item 2 wording preference.
| Question | Number | Percentage |
|---|---|---|
| How much does your grief interfere with your life? | 138 | 48.9% |
| How much do your feelings interfere with your life? | 75 | 26.6% |
| How much does your emotional response interfere with your life?a | 58 | 20.6% |
| Otherb | 8 | 2.8% |
| No response | 3 | 1.1% |
Wording in original RGS.
Participants who marked “other” provided comments that suggested being more specific about “life” (e.g., daily life, day-to-day life).
3.3. Wordy language
Participants' evaluations of the fourth item were somewhat conflicting, with disagreement about whether to refer to behaviors as “common” and differences of opinion on listing specific grief-related behaviors in the item. Although some women felt that their experience was validated by the item that asked about avoiding events and situations, others suggested that the wording could be condensed. However, they differed on what parts of the question should be edited. For example, some women recommended removing the phrase “It is common for people who have experienced a loss like yours” at the beginning because it is not comforting to hear how common loss is. Others thought that including the first sentence mentioning “it is common” was important and recommended editing other portions of the question instead. Camille shared her thoughts on leaving the first sentence unedited and removing references to specific behaviors in the second sentence,
I like the first sentence because it prefaces the question. The second sentence, some of these may apply to you and some may not. I think I would just do away with the second sentence in question 4. … But I liked the lead-in because it prefaces what you're getting ready to ask. And so, when I was reading that first sentence, I was like, “Yep, yep, yep. I know what you're talking about. Yes, that's me, that's me, that's me.”
Similar to the women who participated in interviews, survey respondents did not have a consensus on the best wording for this question. Some preferred including details whereas others thought the wording was too long. One survey participant who marked “other” as her preferred wording commented that she did not do any of the things suggested in the question, which may limit women's ability to relate to the examples provided. The most preferred version by survey respondents (33.3%) did eliminate the “common” language but still suggested that someone in a similar situation may experience some of the listed grief behaviors. The number of losses, χ2(6, N = 282) = 11.23, p = .08, was not significantly associated with wording preferences for this item. However, the type of loss χ2(30, N = 282) = 44.69, p < .05, and the time since loss χ2(36, N = 277) = 77.67, p < .001, were. Individuals who had experienced a miscarriage or abortion did not want to hear that it was “common” to engage in specific avoidant behaviors; however, those who had a stillbirth preferred prefacing the question with that information. Additionally, individuals who had experienced a loss within the previous year preferred the wordier item that stated avoidant behaviors were common whereas those whose loss was more than 20 years ago did not prefer the additional information. There was not a clear preference for individuals who had a loss sometime between 1 and 20 years. See Table 5 for question wording and preferences.
Table 5.
Survey respondents' item 4 wording preference.
| Question | Number | Percentage |
|---|---|---|
| People who have experienced a loss like yours might avoid doing things or being in situations that remind them of their loss, like attending baby showers, being around pregnant people, or those who have a baby. Some of these may apply to you and some may not. How often are you avoiding things you used to do before your loss? | 94 | 33.3% |
| It is common for people who have experienced a loss like yours to avoid doing things, being in situations, or being with people that remind them of their loss, such as attending baby showers, being around pregnant people, or those who have a baby. Some of these may apply to you and some may not. How often are you avoiding things you used to do before your loss?a | 69 | 24.5% |
| People who have experienced a loss like yours might avoid doing things or being in situations that remind them of their loss, like attending baby showers, being around pregnant people, or those who have a baby. How often are you avoiding things you used to do before your loss? | 56 | 19.9% |
| It is common for people who have experienced a loss like yours to avoid doing things, being in situations, or being with people that remind them of their loss. How often are you avoiding things you used to do before your loss? | 35 | 12.4% |
| People who have experienced a loss like yours sometimes avoid doing things, being in situations, or being with people that remind them of their loss. How often are you avoiding things you used to do before your loss? | 23 | 8.2% |
| Other | 4 | 1.4% |
| No response | 1 | 0.4% |
Wording in original RGS.
4. Discussion and conclusion
4.1. Discussion
Reproductive loss is a prevalent experience that demands attention to, and treatment of, any accompanying negative outcomes [13]. This type of loss may be traumatizing to some individuals, which can lead to complicated grief. Clinical screening is imperative to attend to, and perhaps even prevent, the negative mental and physical health consequences that accompany complicated grief after reproductive loss [[2], [3], [4], [5]]. Assessing women's grief demonstrates that a health care professional recognizes the human element in this situation and doesn't just view this as a common medical occurrence. However, screening for complicated grief after loss must be done thoughtfully and compassionately to avoid further trauma. Therefore, care must be taken in the wording of items to be sensitive to women's experiences and needs for support.
Existing scales to measure grief are not only too long for efficient clinical use, but they also lack input from patients on their language use and administration [13]. Results from this study privilege the voices of patients by offering preferred wording suggestions from women who have experienced pregnancy loss and grief. A primary strength of this analysis is the robust multi-method design in which we used survey data to support our initial focus group findings. Both phases of the study demonstrated consistent assessments of three problematic items that would benefit from refined language before further validity testing and clinical use. One limitation of the current study is that we did not test revised wording of the items to ensure validity and assess the extent to which items could be triggering for patients who complete the screening tool. Future phases of development should address these issues.
4.2. Innovation
Both the development, and eventual implementation, of this new reproductive grief screening tool demonstrates groundbreaking research and practice. Particularly innovative in this phase of development was the privileging of the voices of patients on the frontlines of coping with reproductive grief through the use of multiple methods, including in-depth interviews and surveys. Currently none of the widely used instruments for measuring reproductive grief have been designed with clear and explicit input from patients [13]. As stated in a comprehensive review of instruments designed to assess perinatal grief:
One limitation of all of the instruments presented is the lack of stakeholder input in the initial development and subsequent use. … People with first-hand experience are important stakeholders because they can provide important feedback to researchers regarding the content of survey instruments, and cultural adaption of tools, including linguistic nuances. [[13], p. 664]
Our study fills this critical gap by providing feedback from hundreds of women who assessed the wording of items on the screening tool, a process that is vitally important when asking patients to respond to questions about such a personal and vulnerable experience. Not only did participants assess current wording, but they also suggested language to provide more nuanced wording options for the problematic items. Moreover, researchers have recommended partnering with organizations that offer services and support to those coping with loss [13], and our relationship with the Institute of Reproductive Grief Care ensures that a key stakeholder organization is also involved in scale development.
Additionally, our approach of using chi-square item testing instead of traditional correlational evaluation methods is a novel approach for scale development, particularly in the early phases of developing a screening tool. Chi-square testing focuses on whether categorical response patterns differ across groups or variables without assuming linearity, normality, or interval-level measurement. Thus, this type of testing can identify meaningful item-response relationships that correlational methods may overlook, making this approach useful in early-phase scale development where assumptions of normality and linearity are often violated and item behavior may be non-linear or asymmetric. Items that show weak linear associations may still demonstrate meaningful differences across variables. When used as a complementary tool prior to other validity testing, chi-square testing enhances methodological legitimacy by preserving meaningful items and strengthening the overall rigor of the scale development process.
Finally, the screening tool offers a novel approach to identify patients who may be experiencing complicated grief after a reproductive loss. Participants highlighted the need for improved ways of identifying patients' grief following reproductive loss and demanded a change in the current subpar standard of care afforded women. The novel screening tool can fulfill this need by reforming reproductive loss care practices in an accessible and innovative way.
4.3. Conclusion
Based on this study using both qualitative and quantitative data, we can conclude that women have preferences for how to craft a reproductive grief screening tool for use in clinical contexts. Guidance from women's opinions and preferred wording of items on the reproductive grief screening tool will allow us to develop a brief screener appropriate for clinical use that accounts for the experiences of patients who have coped with reproductive loss in a compassionate and sensitive manner. Women's reactions to the items confirm their face validity and will serve as a basis for designing the language used in the final version of the screener.
CRediT authorship contribution statement
Maria Brann: Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization. Jennifer J. Bute: Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization. Cara Buskmiller: Writing – review & editing. Michaelene Fredenburg: Writing – review & editing, Conceptualization.
Funding
This project was supported by the Institute of Reproductive Grief Care.
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Acknowledgements
We would like to thank all of the women who participated in our study.
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