Women's experiences of discrimination and the impact on health: research

Part 2 – Scoping focus groups with women from different backgrounds

Research aims and methods

Aims

The overall aim of the first phase of the project was to develop an initial understanding of how women in Scotland experience discrimination and how it affects their health. The research objectives are:

• To identify areas of women's health inequalities and discrimination for further in-depth investigation
• To explore the use of intersectionality as an analytical framework to help understand how multiple different aspects of women's identities (e.g. age, disability, race/ethnicity, social class) result in particular experiences of discrimination related to health

Research design and recruitment

The research objectives were developed through literature scoping and consultation with stakeholders, colleagues and policy colleagues. The first phase of the research consisted of four online focus groups that took place in August 2022.

Each focus group discussion lasted approximately 90 minutes. Focus group were advertised to different participant groups to establish diversity in responses and engagement with marginalised groups. It also was a way of incorporating intersectionality in our recruitment strategy. These groups were decided upon through conversations with the Research Advisory Group and the ALLIANCE. The groups and number of participants were:

Group 1: Women over 25 years (n=3)

Group 2: Women aged 16-25 years (n=4)

Group 3: Women from an ethnic minority background (n=3)

Group 4: Women with a disability or a long-term health condition (n=4)

Participants were given the choice of which focus group they wanted to attend, based on how they identified, and were informed at recruitment that they should only attend one focus group. Five participants per focus group were registered, but none of the groups had full attendance on the day. The overall sample was 14 participants.

Recruitment was managed through the ALLIANCE. The ALLIANCE has the networks and connections within the community required to recruit a diverse sample. It also has experience in communicating with stakeholders about women's health. The ALLIANCE advertised the participation opportunity on their website and telephoned and emailed stakeholders to aid recruitment.

A Research Advisory Group was set up to guide the study through providing comments on written materials and giving advice on recruitment, data collection and analysis.

Data collection

In line with ethical procedures, each participant was given detailed information about the study, a privacy notice and consent form prior to the focus group. Upon registering for the focus group, the participants were also sent a link to an online demographic information survey. This information was collected to monitor recruitment and aid interpretation. The survey included questions from the Scottish Government Collecting Equality Data Guidance^[36] and the Census.^[37]

A semi-structured topic guide was developed to structure the focus groups. This topic guide was informed by: (1) the underpinning priorities of the Women's Health Plan, (2) discussions with stakeholders and members of a lived experience group, (3) literature on discrimination and women's health and intersectionality frameworks. A pilot focus group was organised in July 2022 with women in England to test the topic guide with individuals not eligible for the study (as not residing in Scotland), but who could speak to the subject matter. Reflections from the pilot were discussed with members of the Research Advisory Group and senior research colleagues. Alterations were made to the topic guide to ensure all participants would understand how the study was interpreting terms such as 'health' and 'discrimination' and to include interactive 'ice-breaker' exercises using Mentimeter software.^[38]

The focus groups began by researchers explaining the research topic again and reading out the consent form. Participants were reminded they were free to withdraw at any time. Researchers then began the audio recording and worked through the topic guide. The topic guide is attached in the appendix.

All participants were sent signposting information provided by the ALLIANCE and a thank you e-voucher, via e-mail immediately after the discussion.

Data analysis

Given the amount of salient and relevant data that came out of the focus groups, we decided to conduct thematic analysis to deliver a set of initial findings from the work, in addition to using them to steer the interview phase.

Audio recordings were transcribed by an external company. Transcripts were then analysed thematically using NVivo 1.6.1 software^[39] by the two researchers on this project. A three-phase analysis approach was used: (1) open coding, (2) axial coding and (3) theme generation. Open coding involved researchers reading through the transcripts and assigning one-word or short phrase codes to sections of text. Researchers then revisited the transcripts and codes with similar meanings were grouped together and relationships identified between them (axial coding). The researchers met regularly to compare codes and develop a set of themes. This iterative process resulted in a set of four themes, which are outlined here with quotes from the data to support the findings. Participants are referred to by their participant number and which focus group they attended: '[Participant 14, over 25s group], [Participant 10, ethnic minority group]' and so on.

Limitations

These findings are not generalisable to the wider population of women in Scotland and interpretation of the findings should be done with this in mind. The sample size was also smaller than we expected due to fewer participants attending each focus group than were registered. Input from more women would have strengthened our conclusions. Nevertheless, there was engaging discussion in all the groups, with a wealth of examples related to discrimination and health. The themes reported here provide important insight into how women in Scotland from different backgrounds and population groups experience discrimination in relation to their health.

The focus groups were done online to allow participants across Scotland to attend, but this may have been a barrier to some individuals' participation.

A further limitation related to the intersectional approach, which we were testing as an analytic framework in preparation for the interview phase. Intersectionality aims to treat all identity characteristics as relevant and avoids focus on one experience of discrimination over others. As this project contributes to the Women's Health Plan, unavoidably gender and sex were regularly the focus of participants' experiences.

Findings

This section reports the findings from the focus groups, organised by the themes the researchers developed as part of the data analysis process.

Participant characteristics

There were 14 individuals across the four focus groups. Most identified as women (n=12). One participant identified as non-binary. One participant did not fully complete the demographics survey. They provided specific information regarding their ethnicity and age during the focus group, but the other characteristics remain unknown for this participant. Participants were aged between 17 and 68 years-old (mean age: 42). Just over half the sample had a long-term physical or mental health condition (n=8). The sample was mostly White Scottish/British (n=10) with other racial and ethnic groups including African, Asian and Gypsy Traveller (n=4). Participants represented each quintile on the Scottish Index of Multiple Deprivation,^[40] with half of the sample residing in the two most deprived quintiles (n=7).

Theme 1: "Excuses" for not investigating

Participants in all focus groups described how they were "dismissed" [Participant 7, 16-25 group] by healthcare professionals. Women in this study feel as though they are not listened to about their physical and mental health concerns. It goes one step further than being ignored and there is a clear intersectional element to women being dismissed. A continual theme was that participants claimed that parts of their identity are actively sought out and then used against them as reasons not to pursue avenues of healthcare. This list of "excuses" [Participant 13, over 25 group] included: age (younger and older), trans/non-binary identity, weight, relationship status and mental health status. For example, one participant described her experience trying to get treatment for a mental health condition, but instead her weight became the focus of the appointment:

I went [to the GP] because I was depressed, and I came out with an appointment with a dietician, to weigh me and look at what I was eating… And then, years later, I went back and…I ended up with a diagnosis of borderline personality disorder. It was almost too late [Participant 7, 16-25 group].

In this example, the participant experienced delays in receiving support for their mental health due to the immediate focus on another element that they had not gone to the doctor about in the first place. Some participants highlighted this particular example as a dilemma. They agreed that there was probably reason to suggest losing weight, but the undue focus on this over the original medical complaint often meant their condition got worse. The women in the groups felt that instead of listening to women about what they say about their health, healthcare professionals sometimes pursue avenues about what they think (based on appearance and demographic characteristics) would benefit the patient's health. These experiences highlight cultural and interpersonal discrimination. Participants felt that healthcare professionals make assumptions about the patient based on stereotypes and norms embedded within wider belief systems. This type of discrimination was not just a pattern in relation to weight. For example, one participant stated that their identity as a non-binary person is a continual barrier to accessing healthcare for a range of health conditions. They found that when trying to access services, they were recommended therapy because of their "identity" [Participant 8, 16-25 group] which was unrelated to what they were seeking medical advice for.

Similar to the experience of Participant 8, most participants saw little connection between the treatment or support they were recommended and what they had told the healthcare professional about their health. Another example of this came from Participant 2, who experienced a physical health issue but found that when the healthcare professional found out about other aspects of her identity (being a single mum), that was instantly used as a reason for her physical pain:

I actually went to a [healthcare professional]… and got a speech about being a single mum. They said: "Are you sure it's not [stress-related]?" I had broken my hand [Participant 2, long-term condition/disability group].

Participants expressed that while they were experiencing discrimination based on a particular identity characteristic, being a woman was usually the starting point. They outlined this through descriptions of times when men might have experienced the same level of discrimination (e.g. in relation to weight status and age), but did not. They rationalised that women and girls were subjected to this more than men as they are socialised and stereotyped to be mild mannered, to "not make a fuss" [Participant 6, 16-25 group] and to "get on with it" [Participant 14, over 25 group].

Participants also spoke of being "hormonal" [Participant 8, 16-25 group and Participant 13, over 25 group], as an explanation healthcare professionals give for health complaints. Puberty, pregnancy and menopause were highlighted by women of all ages as reasons medical professionals gave for their experiences of physical or mental health symptoms. For example, one woman from the over-25 group stated: "You reach a certain age, then they say, "How old are you?"…"42." Then they say, "Well, it could be the menopause" [Participant 13, over 25 group]. This quote may be surprising given that women in a Lived Experience Group supporting the Women's Health Plan, for example, feel they are not listened to about their menopause symptoms (see page 24 of the Women's Health Plan). However, participants in this present study highlight that menopause is provided as a reason for a range of health symptoms (solely based on the age of the patient) with little support information or hope of further investigation. Participants suggested that these types of diagnoses are ways of dismissing their concerns: "menopause gives them a bit of an excuse not to do anything, I think, to a larger extent. As if to say, "Oh well, love, suck it up"" [Participant 13, over 25 group].

This discrimination takes place at both ends of the age scale, as a participant from the 16-25 group described instances where they were treated as lacking life experience or told their symptoms were related to being a "teenage girl" [Participant 6, 16-25 group]. The age discrimination described here conveys clearly the intersectional experience that is strongly linked to gender. While it is the person's age that is being used as the point of discrimination, it is the female reproductive milestones (not experienced by men) that allows age to be used as a way of discriminating women and denying them health support.

Participants across the focus groups backed up the claim that being a woman meant their health is not "taken seriously" [Participant 7, 16-25 group]. They used specific examples whereby male family members or friends, with similar or the same symptoms, received different responses from medical professionals and appeared to be referred through the system much quicker. For example, Participant 7 described how her and her male family member had different experiences:

My [male family member] has felt guilty about the care he has got, because he's male. [I am] at home, with the same, or nearly the same sort of things, with no help…He got support one month after referral. I've been waiting years, and I have my assessment tomorrow [Participant 7, 16-25 group].

Adding further understanding of the experience of health services as a woman, some participants described the strategy of "having a man in the room" [Participant 4, disability/chronic condition group] during primary care appointments. One participant highlighted how having a man present meant they received better care and were less likely to be dismissed. As Participant 2 was a single parent, she would sometimes bring her male son to appointments and found that the consultant would direct questions and listen to her child over her:

I have been in medical appointments and they would speak to my child instead of me. I think there is something wrong if you're believing a child who is male over an adult who is female [Participant 2, disability/chronic condition group].

This theme details how women in this sample feel dismissed and ignored about their physical and mental health. Participants highlighted a range of identity characteristics that were used as "excuses" to not investigate their health complains. While these experiences were intersectional and based on a number of different elements of someone's identity, for many participants, the dismissal was usually underpinned by being a woman.

Theme 2: Health as a concept

Women responded to our question: 'what comes to mind when you think of the words 'health' and 'being healthy'?' with a range of views related to discrimination. These views in response to this first question mostly relate to ableism. Participants in the disability and chronic condition focus group spoke of ways that they would not be thought of as 'healthy', which they see as unfair. Due to her condition, Participant 2 is rarely able to go for a walk for longer than 20 minutes. She said she is treated as "lazy" and "unhealthy" because she is not able to exercise like an able-bodied person:

I think the definition by able-bodied people of the concept of 'healthy' is very discriminatory [Participant 2, disability/chronic condition group].

Participant 2, and others in this focus group, talked about how the rigid definition of what it means to be healthy affects how they experience treatment and support. Some women said they were told to pursue physical therapy or exercise programmes to help with their condition. What they experienced when they tried this was a misunderstanding about why they were there and what would help their condition. For example, Participant 3 [disability/chronic condition group] said:

But they put me with a trainer, he has no clue how to deal with a 68 year old with [my conditions], and he does his best, you know. And I couldn't get on the exercise bike and he is shocked by this. He tried get me going up and down stairs, I walk with crutches and that is not going to work either.

Thinking specifically about the intersection of gender and disability, some participants experience real barriers to accessing healthcare. These experiences are forms of structural discrimination embedded within the health system. Participant 14 [over 25 group], who uses a wheelchair and suffers from a number of health problems, described how structural discrimination affects her access to women's health services. She spoke of being unable to get onto the table for a smear test, with "lack of thought" about her access to such appointments as there was no hoist to assist her. She also talked about her experience going for a mammogram:

I can't fit in the machine. So, how is that not discriminating against me? Even the last time I went, they expected me to go in a van. I went, "I can't get in a van."

This participant no longer attends women's health appointments because of the ableism she experienced. Discrimination therefore results not only in psychological stress (which participants did highlight), but in reduced access to screenings and appointments that help women maintain a good level of health. These examples of gendered ableism highlight women's experiences are often intersectional.

Participants talked about the concept of 'health' and 'being healthy' as something based on men's health and male bodies. Women spoke about this in relation to gendered expectations about pain:

Women work through difficulty or pain because the system sort of assumes you are a man and your problems aren't there [Participant 13, over 25 group].

There was also discussion across the focus groups about the broader gender discrimination embedded within the health system and health research. Women have a strong awareness of the lack of funding and research for the health conditions that they have. Some of these conditions are disproportionately suffered by more women and therefore have little resource put behind them: As other people have said, it's a female thing because, as I mentioned, [my condition] mostly affects women [Participant 3, disability/chronic condition group]. Alternatively, health conditions that are experienced mostly by men, but the symptoms for women are different, mean that women are often left misunderstood and misdiagnosed. Specific examples where this happened were provided related to autism and ADHD.

Participants want healthcare to be more "holistic" and "person-centred". They think that through doing this, the healthcare system would be less discriminatory and result in a better standard of care for everyone:

And I just don't think the joined-up thinking is there or the holistic approach to all the different complex problems that people have [Participant 3, disability/chronic condition group]

It's hard as well because services are supposed to be person-centred [Participant 7, 16-25 group].

Participants acknowledged the huge economic strain on the health service in Scotland. A few women highlighted that, in their experience, some health professionals are trying to adopt a more holistic approach, but they are constrained by financial and capacity limitations in the health system.

The final way that participants talk about the concept of health relates to the financial resources it takes to be 'healthy'. To access appropriate and timely treatment and prevention such as a good diet and exercise, the women talked about how there was a need to have a certain level of financial privilege:

Healthy eating is expensive. People have to choose to get cheaper food and frozen food, because fresh food is really expensive [Participant 10, race/ethnic minority group].

The data in this theme shows that participants think the very idea of being 'healthy' and the concept of health is in itself discriminatory. What is presented here is mostly institutional/structural examples of discrimination that largely reduce access to current and future opportunities to be healthy for disabled women.

Theme 3: Racial discrimination

Women in the focus groups not only spoke of discrimination within the health system (e.g. interactions with doctors, experiences within hospital and GP surgeries and with NHS systems). They also highlighted broader societal discrimination they face, which is also important to their health. This is something particularly prominent within the experiences of women from an ethnic minority background in the focus groups. Although this focus group did give some gendered examples, the participants' ethnic background was what they continually came back to when discussing discrimination. Women in this focus group spoke of "daily" and "expected" [Participant 11, race/ethnic minority group] acts of racial discrimination that impact on their health. Participants spoke of these non-healthcare specific acts of interpersonal discrimination as occurring in several different spaces such as the workplace, education, public spaces like banks, shops and on the street.

A central theme used to explain the impact of discrimination outside of the healthcare setting was the harmful preconceptions and racialised stereotypes, perpetuated by "media representation" that those from an ethnic minority background are subject to. This reflects the 'cultural discrimination' level described earlier in this report. Participants disclosed that they would sometimes try to "hide" [Participant 11, race/ethnic minority group] their racial or ethnic identity in order to not be subjected to racial discrimination. This was an exhausting practice. Other participants also have daily practices to try and deal with racism:

I will always put my bags down at the front of shops so that the staff can see I'm not stealing stuff. I will always have someone [a staff member] following me [Participant 10, race/ethnic minority group].

People sometimes assume I don't speak English because of how I look. I sometimes just ignore them because you can't always win every battle [Participant 9 race/ethnic minority group].

The women in the focus group from an ethnic minority background described how they expect racism every day. Their daily strategies to try and avoid or prepare themselves for racism have an effect on their mental health. Two participants from this focus group spoke of having to leave jobs because of the stress caused by racism from their colleagues. One participant felt they were "treated unfairly" [Participant 9 race/ethnic minority group] and had to go off sick. Another participant said she "felt so bad" about her workplace she had to leave as the racism she faced "impacted" [Participant 11, race/ethnic minority group] her to such an extent.

Racism has notable effects on participants' lives. One participant expressed that the television programme "My Big Fat Gypsy Wedding" airing in the UK caused women in the community to restrict their everyday movements: "Sometimes they don't even want to take their children to school the next day. So of course it is impacting on people's health, of course it is" [Participant 11, race/ethnic minority group].

The vast majority of examples given of racial discrimination are outside of healthcare settings. However, Participant 10 provided one experience whereby racism had directly limited her access to healthcare:

I was at the GP [surgery] and the receptionist said "Are you sure if you are eligible for that test?" I said, "Yes." And he said, "I need to phone somebody," and it took about an hour to go through checking my IDs, checking they were real. It was unnecessary.

This quote, when viewed alongside evidence in Theme 1, reveals how women from ethnic minority backgrounds may experience barriers to healthcare and intersectional inequalities at stages which are not described by the white women in the groups. In other words, the challenges of entering the health system for women from ethnic minority backgrounds are distinct forms of discrimination that come before entering the doctor's office. Participant 10 described this experience as expected, based on the "assumption of criminality" attached to being Black.

Notably, these participants were asked the same questions as the other focus groups about discrimination and health. However, instead of sharing experiences that were explicitly related to health, women in this focus group mostly spoke of their daily experiences of racism. There were no examples of being dismissed by healthcare professionals or delays in treatment or referrals, compared to the multitude in the other (mostly White) focus groups. It is this wider societal racism, over and above sexism, that is seen as a priority for health for these women. Data in this theme show that, because of the pervasiveness of daily racism experienced by participants, they rarely separate their experiences into 'healthcare settings' and 'non-healthcare settings'.

There was only one given example of how sexism and racism intersect with a healthcare professional. This example showed a specific discriminatory experience for Black women. It also highlights how there could be real health consequences for the patient:

Someone in my family was pregnant and she went into labour… the paramedics said, "I'm sure you just took the pain where you are from." He also wasn't handling her with care. It comes back to how black women are masculinised [Participant 10, race/ethnic minority group].

This excerpt highlights the potential for further racialised gender discrimination from healthcare professionals, when people eventually get access. There were potentially so few of these examples because the race/ethnic minority group had fewer interactions with healthcare professionals in general. This theme informed the interview phase of the research as we sampled so that we would hear the views of ethnic minority women who either had a health condition or more experience of the healthcare system.

Theme 4: Self-advocacy

Many participants spoke of having to constantly "fight" [Participant 14, over 25 group] for the opportunity to be healthy. Women used examples of interpersonal and structural forms of discrimination and described how self-advocacy was one of the few things they do to tackle it. Methods of self-advocacy develop over time through experiences and advice from friends and family. Advocating for oneself includes things like extensively researching symptoms and conditions, being vocal and assertive with medical professionals, seeking out support through private or alternative avenues, learning what to say to health professionals and learning how to complete forms in a way that would mean getting seen by the right person within good time. For example:

I have printed off scientific articles to take to the doctor, to do their work for them so I can get a referral [Participant 8, 16-25 group].

Participants acknowledged that some people are not as able or privileged to advocate for themselves as others. Participants described how they need to know the system and to "know what to ask" [Participant 14, over 25 group], which is a personal resource only available to some people, further amplifying health inequalities. Having the confidence and knowledge to advocate for oneself is likely to be impacted by gender, race/ethnicity, disability, social class, age and sexual orientation. Participants gave many intersecting examples of this, again expressed within the context of being a woman and being expected to not make a fuss, as mentioned previously in this report.

Women in this study also spoke of self-advocacy in relation to expectations of how women are supposed to behave. Even once you know what to ask or how to fill out forms correctly, some participants spoke of how the manner in which they conduct themselves has an impact on how successful their self-advocacy is:

If you're not the person who makes enough noise, you aren't going to be acknowledged and you'll be overlooked [Participant 5, 16-25 group].

So I do think there is a thing about… I am articulate, I am assertive, I am not going to take too much nonsense [Participant 3, disability/chronic condition group].

Expressing levels of assertiveness is not always simple or down to who shouts the loudest. Some participants noted that for some women, being assertive results in further gender stereotyping:

When you advocate for yourself and you kind of get dismissed, then some people then won't continue. But people like myself will get words like 'difficult' in their medical notes [Participant 7, 16-25 group].

Participant 7 described how she has to accept the label of "difficult" or "not nice" as "it was just easier". She felt it was the only way she would get any health support or treatment, which in itself has an impact on her mental health. Another participant in this group, who is from an ethnic minority background, also outlined having to make decisions about how to behave and how that might lead to different results:

So what do you then do? Do you then choose to be difficult, because sometimes it's the only way to get things done, or do you try and hold back a wee bit more, to see how things pan out? I struggle with that personally, because you don't get the chance to have that balance, because sometimes it's because you're a woman [Participant 5, 16-25 group].

Finally, in the focus groups we also touched more on the financial burden of being healthy, mentioned in Theme 2. Finances also limit participants' ability to advocate for their health. Many participants described long, frustrating and complicated journeys in which they had to advocate for their own health to receive referrals, diagnoses and treatments. Having gone through that experience, they then were usually faced with the reality that the NHS did not offer what they needed. This was evidenced through mentions of extremely long waiting lists or the inability to afford treatment and prevention programmes. For instance, Participant 3 [disability/chronic condition group], after several years of seeking treatment for a chronic physical condition, was told that they have "all the tools", but what they needed was Cognitive Behavioural Therapy to support them. Participant 3 was told that there was a "fat chance" of receiving that support from the NHS. The private therapists she looked up were "£100 an hour" and so financially, she was not able to get the recommended health support.

Other participants described similar events in which they exercised self-advocacy and that had enabled them to cope with the sexism and other forms of discrimination they experience in relation to their health. However, the result of self-advocacy is not better health outcomes for women, but a path to treatment or support that they are usually unable to take due to structural, predominantly financial, barriers. Participants talked about the "exhaustion" [Participant 7, 16-25 group] and frustration they experience having gone through many years of trying to get referrals and diagnoses, only to then not be able to afford the things that could help them improve their health.

Conclusions

This preliminary phase of research highlighted a number of ways in which women in Scotland may be discriminated against and how those experiences impact on their health. These experiences were almost always intersectional, but largely underpinned by being a woman. The exception to this was for women from ethnic minority backgrounds, who talked about prioritizing navigating racism. The young people's group described many intersectional experiences of how they felt discriminated against because of their age, gender and other identity characteristics. The salience of the findings from this specific focus group, coupled with the comparative lack of evidence related to young women's experiences, led us to build on the findings from this phase using in-depth one-to-one interviews with young women.