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

Part 1 - Evidence review and rationale for research

The research began with a review of the current evidence base on women's health inequalities, discrimination and health, evidence and literature within a Scottish context and intersectionality. The evidence review was used to identify gaps that the research could begin to address and to develop the research approach that would meet the policy action.

Women's health inequalities

Health inequalities, both across and within countries have been widely described and evidenced in research.^[1] Social and environmental conditions are thought to contribute to around 50% of global unfair differences in health outcomes.^[2] Gender is a strong determinant of health with a range of health inequalities particularly disadvantaging women across the life-course.^[3][4] Despite the fact that women globally tend to live longer than men, women suffer to a greater extent from a range of illnesses.^[5] A graph developed from recent National Records Scotland data as part of our evidence review outlines how this an important consideration for women's health inequalities in Scotland.

The graph displays that when healthy life expectancy at birth is examined as a proportion of total life expectancy at birth, while women have longer life expectancy and healthy life expectancy than men, the proportion of their life that is spent in good health is notably and consistently lower than men's. The proportion of a woman's life spent in good health has mainly fluctuated around 78% from 2009-11 to 2014-16 but has since decreased year on year to 75.6% in 2019-21, the lowest since time series began. This compares to men's whose proportion of healthy life expectancy remained around 80% from 2009-11 to 2015-17 and has since decreased to 78.9% in 2019-21, again the lowest since time series began.

There is further evidence that women experience greater disability and comorbidities and generally spend fewer years in good health than men.^[6][7][8] In Scotland, data from the Scottish Health Survey 2021 found that women are more likely than men to report living with a limiting long-term health condition.^[9] In 2022, the UK had the largest female health gap of the G20 countries and the 12th largest globally placing it behind other European countries such as France, Germany, and Ireland.^[10]

Despite this evidence, there remain significant gender data gaps in medical and public health research, which has been described as further contributing to health inequalities.^[11] Women have unique health problems that are under researched, including gynecological conditions which can have severe impacts on health and wellbeing. For instance, despite endometriosis affecting around 1.5 million women in the UK, and an estimated one in ten women in Scotland, an All Party Parliamentary Group (APPG) Inquiry found that it takes 8.5 years on average from onset of symptoms to be given a diagnosis in Scotland. Further, 58% of women in Scotland visited their GP 10 or more times before being diagnosed, hence its priority in the Women's Health Plan.^[12][13]

Some health issues that affect both men and women can affect women differently and with undesirable outcomes.^[5] Some studies suggest that gender biases in clinical trials are contributing to worse health outcomes for women. For example, a study from the University of Leeds found that women with a total blockage of the coronary artery were 59% more likely to be misdiagnosed than men, and that women had more than double the rate of death in the 30 days following a heart attack in the UK.^[14]

Women are also more likely to experience mental health conditions than men.^[15] While rates have remained relatively stable in men, research has found that prevalence is increasing in women. In 2021, women's average mental wellbeing scores in Scotland fell by more than those for men.^[16]

Individuals can have multiple parts of their identity that lead to disadvantage and to worse consequences for health. Epidemiological studies have outlined that gendered health inequalities can be partly explained by inequalities between women and men in some key social determinants of health, including income, paid and unpaid work.^[17][18] In the most deprived areas of Scotland, women live around 25 less years in good health compared to the most affluent areas (Figure 2).

Disabled women in Scotland also experience specific barriers when accessing a range of services. According to Mencap, the life expectancy of women with a learning disability is 18 years shorter than for women in the general population.^[19] Further, NHS digital statistics indicate that patients with learning disabilities have lower rates of cancer screening than those without and are 8.4 times more likely to experience severe mental illness.

In Scotland, around two thirds (71%) of people experiencing mental health problems report facing stigma and discrimination.^[20] People describe the stigma and discrimination they experience in services as worse than the diagnosis of a mental health problem. Many also report facing stigma and discrimination for more than one reason, or "dual stigma", when they experience a mental health issue and have another protected characteristic, for example are LGBTQi+, from an ethnic minority background, in a certain age group, or have a sensory impairment or wider disability.^[21]

Further, there is evidence that there are gendered health inequalities in relation to healthcare access and standard of healthcare. Based on more than 400 responses from women in Scotland in 2020, The Health and Social Care Alliance found that across all areas of women's health, respondents reported not feeling heard, particularly when they then received unclear or incomplete information.^[22] Based on a survey of 900 young women and people of marginalized genders aged 16-30 (2022-2023), The Status of Young Women report further evidence that young women in Scotland are not taken seriously in healthcare settings. Across every theme, they found that young women are often dismissed, and their experiences are minimised. Overall, the report exposes the intersectional barriers young women and young people of other marginalised genders face in accessing healthcare in Scotland.^[23]

Similar patterns have been observed in England. Based on 100,000 responses from women across England in 2022, the Women's Health Strategy found that 4 in 5 (84%) women reported not being listened to by healthcare professionals. Many women recalled their symptoms being dismissed upon first contact with GPs and other professionals. Many felt they had to persistently advocate for themselves to secure a diagnosis, often over multiple visits and found, post-diagnosis, that discussions about treatment options were often limited, and some said their preferences were ignored. In addition, an ethnographic study of women and healthcare professionals in the UK, 'Hysterical Health', revealed how embedded cultural beliefs about women shaped how women were perceived and treated within the health system. The authors concluded that in order to 'level the playing field', assumptions around how women (particularly Black women) experience pain and report their symptoms needs to be reconsidered.

It is widely acknowledged that it is embedded power imbalances between men and women that are likely to be major drivers of these types of health inequalities. ⁸ Discrimination that results from these power imbalances is increasingly being highlighted as a key driver contributing to gendered health inequalities that occur in the population.^[24]

What is discrimination?

Discrimination is the unfair or prejudicial treatment of people and groups based on their characteristics.^[25] Under the Equality Act 2010, direct and indirect discrimination is unlawful. Direct discrimination refers to a person, policy or practice treating someone differently or worse than someone else for certain reasons. Indirect discrimination refers to being treated the same as others, but there being a worse effect on some people because of who they are. The 'protected characteristics' that someone can be discriminated against that come under the Act are:

• age
• disability
• gender reassignment
• marriage and civil partnership
• pregnancy and maternity
• race
• religion or belief
• sex
• sexual orientation

Discrimination can also occur based on aspects of an individual or group that do not come under protected characteristics. For instance, socioeconomic position, language, geographical location and health status are also aspects that make up an individual's identity and can be used to discriminate against someone.

How can discrimination impact on health and health inequalities?

Discrimination can have an effect on someone's health in many ways. This project was guided by three levels at which discrimination can impact on health, outlined in Williams et al's (2019)^[26] paper on racism and health. Racism has been the principal focus of research on the health effects of discrimination, with a considerable amount of research produced by Professor David R Williams and colleagues in USA populations. While racism may be a particularly detrimental form of unfair treatment, recent evidence suggests that unfair treatment of any type may predict poorer health outcomes in ethnic minority and non-minority populations alike.^[27] Williams' work has been used to guide research on a broad range of types of discrimination.^[28][29] The three levels are adopted in this report as a useful framework for considering all types of discrimination and how these might impact on women's health and inequalities. The three levels within the framework are:

(1) Cultural – belief systems, images and norms of wider culture are embedded with ideas of which people are inferior, which creates widespread negative beliefs (stereotypes) and attitudes (prejudice) that devalue and marginalise those people. Cultural racism is the wider context that allows institutional and individual-level discrimination to flourish. For example, portrayals of negative racial stereotypes in media, such as Black women being more aggressive than White women, can be damaging for health.

(2) Institutional/structural – social policies or structures that limit access to resources and opportunities in society. For example, a workplace may have a promotion policy based on number of days/hours per day spent in the office or ability to attend in-person meetings on certain days. This discriminates against people who are more likely to have flexible or home working patterns, including disabled people and caregivers (who are more likely to be women).

(3) Individual or interpersonal – differential treatment of certain groups of people, instigated by social institutions or individuals. This level is likely what people would talk about when describing sexism, racism, ableism and other 'isms'. These experiences could include more subtle 'micro-aggressions' including misguided comments, being treated as less intelligent, as untrustworthy or with less respect. For example, a woman giving birth in hospital being given less attention by the medical professionals because she is gay.

Discrimination occurs at these three levels, often at the same time and in complex ways. Williams et al (2019) provides some examples of how discrimination can impact on health:

• Health-damaging psychological responses to discrimination, resulting in poorer mental health (e.g. symptoms of anxiety, depression and aggression), low self-esteem and self-worth, low quality of life, psychiatric disorders and conduct disorders.
• Psychological stressors leading to negative health behaviours as a coping mechanism (e.g. drinking alcohol, drug misuse and tobacco smoking).
• Avoidance of health professionals and settings, due to lack of trust and expectation of mistreatment. This can lead to delays in seeking healthcare for medical concerns and lower adherence to medical recommendations.
• Biases among health professionals and systems that restrict access to desirable resources, including referrals, treatment, care and support.

What are the evidence gaps related to discrimination and women's health inequalities?

Our literature search found that the majority of relevant peer-reviewed evidence related to studies examining how particular instances of 'perceived discrimination' impacted on individuals' health. While these studies tell us something that backs up the claim that discrimination is a key determinant of health, it does little to untangle questions around how discrimination plays out at the different levels described by David Williams above. Therefore, the primary evidence gap that we set out to address in this research relates to how and why women experience discrimination.

Secondly, most studies on discrimination tend to focus on one aspect of discrimination, with the majority of evidence and literature exploring racism and health. We were interested in exploring multiple forms of discrimination and how they impact on women's health. While there has been a recent theoretical shift to understanding discrimination and health inequalities in this more complex and nuanced way, through a framework called intersectionality (described in a later section), it has seldom been applied within primary research within the UK.

Thirdly, studies on discrimination and health are mostly undertaken in North America. There are far fewer studies within the UK and Scotland. There are the studies mentioned in the previous section that provide some evidence. However, these studies largely had a focus on healthcare access and perceptions of healthcare professionals. The aim of this present study, coming from a public health and social determinants perspective, was to explore discrimination and health in a broader sense, giving participants the opportunity to discuss how work, school, public space and everyday interactions (as well as healthcare settings) might shape their experiences of discrimination and any subsequent impact on their health.

Therefore, the evidence gaps this research begins to address relate to: (1) how and why women experience discrimination, beyond descriptions of its existence and effects on health (2) exploration of multiple forms of discrimination, and (3) the sparse evidence on discrimination and health within the UK and Scotland.

Rationale for qualitative research

The evidence reviewed here complements the Plan's acknowledgement that health inequalities are experienced by women in Scotland. There is a broad evidence base of quantitative data in various fields highlighting that discrimination against women and women's health inequalities exist globally.^[30] What is less clear is 'how' and 'why' discrimination operates to impact on women's health. This is a challenge within health inequalities research more broadly.^[31] Factors that shape health experiences, such as discrimination, are not easily captured and measured through quantitative data. It is only through speaking to women and girls throughout Scotland about discrimination that we will build evidence to support policy action for reducing women's health inequalities. Therefore, through our review of the literature and consultation with policy colleagues, we concluded that what was needed was primary qualitative research. The findings of this qualitative work will not be generalisable, but they will complement quantitative work to begin to plug the gaps in the evidence on women's health inequalities in Scotland.

Rationale for two-phased project

Having identified the need for qualitative evidence in Scotland, the next step was to understand which areas of women's health inequalities and discrimination should be examined. It would not be possible to provide rigorous evidence on all areas and it made sense to focus on one so that a meaningful contribution could be made. In order to choose the area of focus, we wanted to have broad conversations about health inequalities with women from a range of backgrounds. This would help us identify areas of interest from people with lived experience and align those with the needs of the Plan and evidence gaps in Scotland. We were open to the possibility of focusing on a specific area of women's health (e.g. menstruation) or on a sub-population of women (e.g. ethnic minority women), or both.

Focus groups are an established way of conducting this scoping and identification work.^[32] Therefore, the first phase of the project comprised a series of focus groups as a preliminary scoping phase to support a more in-depth qualitative project on a particular health area and/or a subset of women. The findings from the focus groups aided the development of the research questions and focus of the more substantive second phase of the project. Although the work was intended to be a preliminary scoping exercise, the findings from the focus groups spoke to women's health inequalities and discrimination in a salient and compelling way. Therefore, we thematically analysed the focus group findings and presented them in Part 2. These findings should be interpreted with caution due to the small sample size and taken as a pre-curser to the more substantive and in-depth work on a specific group of women in Part 3.

Semi-structured one-to-one interviews allow detailed exploration of complex and difficult topics in greater depth with individuals and are preferable for this kind of research on discrimination and health inequalities.^[33] Therefore, individual interviews were chosen to build upon the findings from the focus groups and explore in greater detail an area of women's health inequalities and discrimination. The rationale for the chosen focus for the second phase is provided in Part 3.

Overall, this two phased approach meant that the research focus for the individual interviews was developed with a recent and broad understanding of some experiences of discrimination women in Scotland face. In turn, the preliminary focus groups allowed a level of confidence that we were investigating a relevant area of women's health inequalities through the interview phase. The focus group findings were triangulated with further evidence scoping and conversations with policy colleagues and the Research Advisory Group to help researchers develop a rigorous and robust qualitative interview project.

Intersectionality

The two-phased project adopted an intersectional approach to research design and analysis. Intersectionality is a term coined by critical legal race scholar Kimberlé Crenshaw (1989). Intersectionality refers to how different aspects of a person's identity overlap to form their unique experience. It is used as an analytical framework in this report. Intersectionality is used to describe how the multiple identities and social positions people hold interact with each other, and how those interactions shape our lives and experiences of inequality. Intersectionality challenges the idea that the experiences of everyone belonging to a group, such as 'women', are the same. The goal is to understand the difference 'within and between' groups of women.

Intersectionality is beginning to be used within policymaking in Scotland. A report by the Poverty and Inequality Commission^[34] highlighted work since 2020 that is shining a light on intersectional inequalities and how they shape the lives of women and girls in Scotland. The report concluded that more work could be done to extend the intersectional approach beyond the Scottish Government Equalities Unit. Further, The First Minister's National Advisory Council for Women and Girls (NACWG) made a recommendation of "adequate resourcing to enable the collection and analysis of intersectional data to allow policy-makers and influencers to have access to more robust information leading to more effective policy-making", which was accepted by the Scottish Government in December 2021. There has also been an analyst guide to using intersectionality produced by the Scottish Government, which guided this research project.^[35] Crucially, intersectionality is also one of the underlying principles of the Women's Health Plan, which this research was developed to support.

This project used an intersectional approach in three key ways:

(1) Recruitment - We recruited participants from a diverse range of backgrounds. As all participants were women or eligible to use women's services, recruiting based on other characteristics guaranteed at least one intersection of interest.

(2) Data collection - We developed questions for the focus groups that were broad and designed to allow participants to talk about their lives, without undue focus on one element of their identity.

(3) Data analysis - We analysed the data alongside demographic information about the participants and interpreted what they said through an intersectional lens. We regularly discussed our interpretations to uncover the different intersecting identities that were important for discrimination and health. We continually re-read the transcripts to see if our interpretations should be revised and if there were other intersections of interest we may have missed.