Do we risk causing harm when we research stigma?

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It was almost a decade ago that we started conducting research to assess abortion stigma in partnership with service delivery organizations in the Global South. We adapted various stigma scales to learn about perceptions of and experiences with stigma among people seeking abortion, as well as attitudes about abortion among community members. We often adapted and implemented the Individual-Level Abortion Stigma (ILAS) scale to measure stigma among abortion clients, and we started to hear a pattern in the questions among the service-delivery organizations:

  • How do people feel responding to these statements? 

  • Is it possible that if we ask these questions, our clients will feel judged by the organization?

  • Will the negatively worded statements in the ILAS inadvertently introduce or reinforce negative or stigmatizing concepts about abortion?

The Individual-Level Abortion Stigma (ILAS) is a tool to measure multiple dimensions of stigma among people who have abortions. It was validated in the United States and has been used in various countries.

The ILAS has four subscales:

  • Self-judgement (e.g., I felt guilty)

  • Worries about judgement (e.g., my abortion would negatively affect my relationship with someone I love)

  • Isolation (e.g., I can talk to the people I am close with about my abortion)

  • Community condemnation (e.g., abortion is the same as murder).

We wanted to learn about experiences responding to the ILAS directly from people who had an abortion. In this exploratory study, we conducted in-depth interviews by phone with 10 people from different parts of Mexico. Participants were recruited by the MARIA Abortion Fund for Social Justice (Fondo MARIA) if they were aged 18 and older, had an abortion in the prior 6 months, and said they had support from someone close to them at the time of the abortion. 

Key Findings:

  1. Experiences with the ILAS

In the interviews, we assessed respondents’ reactions to and experiences with the ILAS, focusing on how the items made them feel about themselves and their abortion. 

Positive or neutral experiences

Seven of the 10 respondents reported having positive experiences answering the questions on the ILAS, for example feeling “comfortable,” “good,” or “calm.” 

Some women said they enjoyed the responding to the ILAS in the interview or that it served a positive therapeutic purpose for them, as in the case of a woman who felt “relieved, like to be able to talk a little bit more about it [her abortion]”.

Some said the questions made them reflect about their abortion, sometimes helping reaffirm their decision. As one woman said, “it made me think, too, that really, I made a good decision, even though it [abortion] is not something that I think that anyone likes [to do]”. 

One respondent provided a more neutral response when asked about her experience with the ILAS, saying “I didn’t feel uncomfortable”. 

Mixed or negative experiences with the ILAS

Three participants, however, said the ILAS caused strong emotions, generated doubts about their abortion decision, or left them with mixed feelings. 

One said they had a range of emotions when they responded:

With most of the questions I felt calm, I felt good. With the other questions, well, yes, I felt uncomfortable, I had contradictory feelings. I began to wonder if what I did [having an abortion] was good, if what I did was bad, and what would have happened if I hadn’t done it. So yes, like, I felt a bit [. . . ] emotionally out of control. 

Another expressed mixed feelings, saying the ILAS included “questions I hadn’t considered [. . . ]. It awakened various feelings [. . . ]. A sensation of sadness, [. . . ] [but also] the comfort of knowing I am accompanied.” 

The third participants described the ILAS questions as “somewhat uncomfortable” and “suddenly put[ting] myself in doubt regarding [. . . ] the decision I made”.

Differences by sub-scale

Women generally described mixed and negative reactions to the “worries about judgement” and “community condemnation” sub-scales, and more neutral or positive reactions to the “isolation” and “self judgement” sub-scales. Typical responses to each of the scales are described below.

Sub-scale 1: Worries about judgement

Items in the sub-scale: Other people might find out about my abortion; my abortion would negatively affect my relationship with someone I love; I would disappoint someone I love; I would be humiliated; people would gossip about me; I would be rejected by someone I love; people would judge me negatively.

Responses: Nine of the ten participants said these items stood out to them or made them aware of the lack of support for abortion in their community. Some said this sub-scale made them reflect or feel “sensitive”; these participants often had friends or family who didn’t support abortion. 

Most of the participants said this sub-scale did not provoke strong feelings but did bring up some anger or sadness. One participant, however, had a strong negative response, saying the sub-scale created discomfort, making her question her decision and feel differently about her abortion.

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Sub-scale 2: Isolation

Items in the sub-scale: I have had a conversation with someone I am close with about my abortion; I was open with someone that I am close with about my feelings about my abortion; I felt the support of someone that I am close with at the time of my abortion; I can talk to the people I am close with about my abortion; I can trust the people I am close to with information about my abortion; when I had my abortion, I felt supported by the people I was close with.

Responses: Seven of the ten participants said they had a positive experience with this sub-scale. For example, the process made them feel relieved, grateful, or happy that they had been supported by friends or family. One participant said that responding to these items made her feel more confident about her abortion decision. 

However, three participants said the sub-scale brought up uncomfortable or negative feelings. These participants talked about having limited support during their abortion or having at least one friend or family members who didn’t support their abortion.

____

Sub-scale 3: Self-judgement

Items to the sub-scale: I felt like a bad person; I felt confident I had made the right decision; I felt ashamed about my abortion; I felt selfish; I felt guilty.

Responses: Half of the participants described a positive reaction to this sub-scale, such as feeling “tranquility” or realizing they had become more comfortable about their decision over time. 

The other half had negative responses or said it was difficult to respond, made them feel sad, or brought up unresolved or negative feelings about their abortion such as their doubts about their decision. Some of the terms using in this sub-scale stood out to the participants: selfish (‘egoista’), guilt (‘culpa’), bad person (‘mala persona’), and ashamed (‘avergonzada’).

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Sub-scale 4: Community condemnation

Items: Abortion is always wrong; abortion is the same as murder

Responses: The items in this sub-scale elicited reflection about the opposition to abortion in their community. For some, thinking about this made them feel anger or frustration. The use of the term ‘murder’ stood out to the participants or elicited an emotional response.  

Two participants described strong responses to the sub-scale. One said it made her feel more sure about her decision, while another described said it made her feel guilty about her abortion.

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It is also worth noting that it is difficult to separate the participants’ experiences responding to ILAS items from their overall experience with the interview. It is possible that the opportunity to reflect on their abortion process with a trained interviewer after recruitment by a trusted organization could contribute to participants’ feelings about the scale.

  1. Timing and format of the ILAS

We interviewed participants approximately 6 months after their abortion. Nine of the 10 respondents hypothesized that completing the ILAS at the time of their abortion would have been different from – and more negative than – their experience in the study. At the time of their abortion, it would have been emotionally challenging or made them feel anxious, worried, “very questioned, very uncomfortable.” As one said said, “in an important moment, well, it could have been invasive.” 

A few said that if asked at the time of their abortion, the scales might have led them to doubt themselves or their decision. 

“If it [the ILAS] had been before [the abortion], it would have made me [. . . ] doubt whether to go ahead [with the abortion], or [I might have] become depressed more easily, even though I was already sure of the decision” (22 years old, Tlaxcala). 

These responses suggest that the timing of administration of the ILAS might make a difference for participants. Conducting the ILAS scale at the time of abortion, or immediately prior, may be more difficult for some respondents as compared to months after.

What does this mean for stigma research?

These findings highlight the importance of carefully considering when it is appropriate to implement the ILAS and exploring safeguards for those participants who may have negative reactions. Some suggestions we have for researchers and practitioners considering the use of the ILAS include:

  • Identify the research question you are trying to answer and weigh the risks and benefits of incorporating the scale. Reflect on the purpose and value of using the instrument, consider other options, and ensure it is the best approach to address the goals of the research. For instance, use of the scale may be valuable if you intend to design an intervention that addresses stigma among abortion clients, while implementing sub-scales or qualitative methods may be more useful if you aim to understand how stigma manifests in certain groups. 

  • If the ILAS is determined to be appropriate and meaningful, consider strategies to mitigate potential negative experiences when implementing the scales. These might include:
    • When preparing the survey, intersperse negatively phrased questions with positively phrased questions to provide a more balanced tone. You can still conduct analyses on the validated scale after you collect the data.

    • For some research aims, administering one or more validated ILAS sub-scale(s) independently will be sufficient. This minimizes the number of negatively worded items. For example, researchers or practitioners could choose to implement only the self-judgement items, or to omit the community condemnation items. 

    • It may be useful to provide a clear, empathetic description of why these questions are being asked and how responses may inform future interventions. This can put the ILAS into context for participants. 

    • Adapting the items may be important in your legal or social context. While these changes make your scores less comparable to other places the scale has been implemented, it is often a priority to make the items more relevant to your community, which will also improve the quality of your data.

Conclusion 

Whether you are overseeing monitoring and evaluation of a program, conducting research, or implementing a needs assessment, measuring stigma may be an important part of your work. Using scales and other measurement tools can be instrumental to documenting changes in stigma over time and assessing success of interventions, yet we do not want to perpetuate stigma among the communities we serve. This exploratory study demonstrated that many people who have abortions will likely feel comfortable or neutral when taking the ILAS scale, while some may have more negative experiences. As such, we suggest considering some of the recommendations provided in this article as safeguards for those that are most vulnerable. 

Find the full article here: https://doi.org/10.3389/fgwh.2021.678101