Beyond the symptoms is a regular opinion piece from CHF CEO Dr Elizabeth Deveny who provides a unique perspective on current and emerging health policy issues that affect consumers.

Her thought-provoking reflections challenge traditional views on consumer-informed policy and offer innovative thought leadership to enhance health equity, honouring consumer’s rights to make informed health decisions, and highlighting the necessity for health decision-makers to partner with consumers and communities.

A young girl has scabies. She’s had these for a long time. Her local clinic is short on the treatment.  Being passed from family to family for care has disrupted her healthcare so the scabies has persisted over years. At a clinic visit I watched healthcare staff make jokes about the condition and scratch themselves. Not funny. This poor child now shuns school because she will be teased. Her mental health has seriously deteriorated as a consequence of this situation.
Sarah, nurse working in remote Australia

This is a heartbreaking story. It’s so sad to think about how this child feels every day and the future that is perhaps in store for them. Do they feel isolated? Humiliated? Punished by a condition beyond their control?

In healthcare, stigma is more than a theoretical concept; it's a barrier that many encounter when seeking care. Stigma involves labelling people as different, attaching stereotypes to them, separating them from others, and treating them unfairly. It often leads to a loss of status and discrimination in situations where there is an imbalance of power. While stigma shares similarities with racism and discrimination, it has unique aspects that set it apart.

As a part of my research for this blog, I asked 30 people for their take on stigma in healthcare. The compounding impact for people labelled as different, often in more than one way, stood out as I read their responses. I’ve attributed their comments as they have preferred. Some folks preferred a pseudonym, others to use their personal details. The top five issues discussed were: mental illness, reproductive health, chronic disease, LGBTIQA+ and neurodiversity in my broad but small sample of health leaders (including consumer leaders, health professionals, public servants and others). There were many more – too much for today’s conversation – but stories and issues that deserve their attention too.

The impact of being stigmatised may be experienced by the patient as well as their loved ones. Fear of complaining is also spoken about with Allison reflecting that ‘Racism, marginalisation, discrimination and stigma all reduce the likelihood of making a complaint and when doing so, whether and how it is managed all create additional barriers and contribute to accumulated negative experience.’

Despite our visible commitment to equitable and accessible healthcare, the way that stigma warps the path to equitable healthcare services is often invisible. This blog aims to begin to explore key issues related to stigma in healthcare and use real-world examples to illustrate its devastating impact.

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Understanding stigma and its impact

Stigma in healthcare is multifaceted and pervasive. It influences patient outcomes, access to services, and interactions with healthcare providers. It affects people experiencing a vast array of health conditions; indeed, it affects many kinds of folks. The expression of stigma in healthcare creates a ripple effect that worsens health disparities.

Impact on health outcomes

My daughter had Graves’ Disease as a 14-year-old. Usually, people with this condition suffer loss of weight and have immense appetites. She was different and become overweight. She was allowed to attend school after having thyroid surgery, only if she didn’t exercise as her heart was playing up. Several times she came home desperately unwell because the PE teacher had told her to join in because she was fat and needed the exercise. This was said in front of all the other children.
Maxine, mother living in metropolitan area

I don’t want to imagine the heartbreaking frustration of this girl and her family. Maxine told me that they had to remove their daughter from school for six months to ensure that she was healthy. To be struggling with your health and also be unable to safely attend school because you face - ridicule from both peers and authority figures is too awful for words. The stigma related to her size, and so her illness, clearly had a negative impact on her health. The way you look – young, old, poor, rich, black, white, and everything in between – often intersects with the health issues that you face and may be cause for stigma and discrimination to be magnified.

Stigma hurts health outcomes. It creates barriers to care, reduces adherence to treatment, and worsens health disparities. Conditions such as HIV/AIDS, mental illness, and obesity are particularly stigmatised. Fear of discrimination due to a potentially stigmatising trait leads patients to delay seeking care. Delays can result in poorer health outcomes. Studies show that stigma diminishes the quality of patient-provider interactions, impacting overall care and health outcomes.

Barriers to access and utilisation of healthcare services

The impact on health outcomes is just the beginning. Stigma also deters individuals from seeking necessary healthcare, particularly in populations dealing with mental illness and substance use disorders. This results in underutilisation of healthcare services. Late diagnoses and treatment lead to worsened health conditions. A CEO of a large disability organisation said to me, ‘In my day job, we see a lot of ‘diagnostic overshadowing,’ where people with disabilities have their legitimate health complaints (including serious conditions) ignored because clinicians see only their disability.’ The work of social scientist Prof. Carla Treloar emphasises the importance of a universal precautions approach to reduce stigma. This includes ensuring all patients feel safe and respected in healthcare settings.

In a clinic, I have felt it necessary to justify why I had to terminate a pregnancy, and how I fell pregnant in the first place (which ultimately falls on the woman for not using birth control or feeling guilt/shame involving anything from sexual pleasure to sexual assault).
Felicity, CIS woman, living in a regional centre

These deeply personal, and sometimes painful, experiences should not be subject to judgement in healthcare settings.  A health leader noted, "People with mental illness who also suffer from substance addiction often face compounded stigma, which leads to delays in seeking care. This delay exacerbates their conditions, making recovery more challenging." Have you ever avoided seeking help because of the fear of stigma and discrimination? I know I have.

Influence on health professional behaviour

Barriers to access and utilisation of healthcare services further compound the issues created by stigma. Healthcare providers can perpetuate stigma through discriminatory practices, biased clinical decisions, or stigmatising language. This dehumanising behaviour not only affects patient experiences but also contributes to a cycle of mistrust and avoidance of healthcare services. Julie, a consumer leader, talks about her experience of shadowing a GP who worked in a homeless health service with in-reach into a tertiary setting.

He would bring a trolley with his computer (so he could access his GP notes) and look through the hospital's paper files. Time and again there would be underlying health issues not diagnosed or addressed. He would just about tear up the patient notes and start again. The frustration was palpable.
Pip Brennan, system advocate 

Were the notes incomplete because the staff were busy? Were these folks unable to clearly articulate their health history and needs? Was the quality of care and/or notetaking impacted by biases that led to poor care? Was there a combination of factors at play?

Internalised stigma

My grandmother lost her hearing because she worried a lot during World War 2. Or at least that's what I was told when I was young. As I grew up, I realised that this was a very unusual explanation. A little bit of research and some discrete conversations with my mother when I was older revealed that my Nana had congenital syphilis. It wasn't something that we were allowed to talk about. Nana believed that her syphilis was deeply shameful. My Nana never learned how to sign (she lip-read) and never made a friend in the deaf community.  I believe this was largely because she didn't want to explain to anyone why she was deaf.

This is a personal story of stigma. It’s my grandmother that I am talking about here.  I saw the deep emotional pain and isolation caused by internalised stigma. I heard the stories of discrimination in everyday life, at work and in healthcare settings.  I saw the long-term effects of this internalised stigma on my Nana’s mental health and overall well-being.

Internalised stigma occurs when individuals accept and internalise negative stereotypes and prejudices associated with their lived experience, identity and characteristics. This means that people (start to) believe negative judgements and stereotypes about people like them. This can lead to diminished self-esteem, depression, and anxiety. Folks may avoid seeking treatment, even when they need it. Sometimes this might be because they feel unworthy of care, fear further judgement, or a mixture of both. Carla Treloar's research underscores the importance of addressing internalised stigma to improve both mental and physical health outcomes.

Intersecting stigmas and social determinants of health

The impact of stigma is not limited to individual conditions. It often intersects with other forms of social discrimination related to age, race, gender, ability, sexuality, and socio-economic status. This intersectionality compounds the difficulties faced by individuals, making it harder for them to access and benefit from healthcare services.

"It was like it was such a trouble to have my preferred name on my bracelet. I felt that I was being stared at by the other sleep technicians. They never said hello, just kept looking at me as if I was some kind of oddity."  
Ricki Spencer, older transwoman living in metropolitan area

This dehumanising treatment is far too common and must be addressed. These intersecting stigmas create additional barriers for people experiencing health disadvantage. It’s incumbent on all of us to break these barriers down.

Where to from here?

Addressing stigma in healthcare requires a collective effort from all of us. It would be great to see a national approach which brings together the various frameworks that speak to biases and discrimination that we are already working to eradicate. If you want to help, see if you can find yourself below. Are you moving any of these actions, or others, forward through your efforts?

Governments

• Fund and support the development of co-designed resources by consumers and communities to address stigma in healthcare.
• Strengthen legal protections for individuals facing discrimination due to health conditions, ensuring they have recourse to justice and creating a safer environment for all healthcare consumers.

Public servants

• Systematically support and implement policies that reduce stigma.
• Organise and facilitate community forums to discuss stigma and its impacts, promoting open dialogue and solutions directly from the affected communities.

Health professional training organisations

• Enhance and further integrate comprehensive training on cultural competency, implicit bias, and stigma reduction into curriculums, ensuring that future healthcare professionals are well-equipped to provide inclusive care.
• Offer training programs for individuals (this includes clinical and non-clinical staff) to learn how to tell their stories effectively, fostering empathy and understanding through personal narratives.

Health professionals

• Participate in ongoing training to recognise and address personal biases, ensuring continuous improvement in providing respectful and supportive care for all patients.
• Share personal and patient stories of overcoming stigma to promote empathy and understanding within the healthcare community, helping to change attitudes and practices.

Communities and community leaders

• Raise awareness about the harmful effects of stigma and advocate for community members, creating a supportive environment that actively works against discrimination.
• Collaborate in the co-design of resources to address stigma in healthcare, ensuring these resources are relevant and effective.

Health services

• Develop protocols to address and prevent stigmatising behaviour within each organisation, ensuring a safe and inclusive environment for all patients.
• Implement feedback systems to regularly collect and analyse patient and loved ones’ experiences related to stigma, using this data to inform continuous improvement efforts.

Family and carers

• Support and advocate for loved ones who may face stigma, providing a strong network of support and advocacy.
• Encourage and support loved ones to share their stories of overcoming stigma to help educate others, fostering a broader understanding and reducing stigma.

People experiencing stigma

• Engage in self-advocacy and seek out supportive communities and resources, empowering individuals to take control of their healthcare experiences.
• Share your experiences to help raise awareness and drive change, contributing to a broader movement to reduce stigma.

Looking to the future

These key issues highlighted above demonstrate the pervasive impact of stigma in healthcare and the urgent need for targeted interventions. By focusing on these areas, healthcare providers and policymakers can work towards creating a more inclusive, equitable, and effective healthcare system. Addressing stigma not only improves patient outcomes but also enhances the overall efficiency and fairness of healthcare delivery

Let’s remember that even with the discrimination and barriers presented, many people facing health challenges demonstrate incredible resilience and strength. And many healthcare workers deliver compassionate care despite workplace challenges. Rose’s story confirms this.

A key issue for Rose is her economic poverty and reliance on the public system, which is the reality for many consumers. Given the terminal nature of her cancer, we are so pleased she is getting quality treatment that is extending her life and, to date, enabling a fully active life. Also, they have put her on a trial program which provides the possibility for extended time.
Liam, health leader and Rose’s brother

Wouldn’t it be wonderful if we heard more stories like Rose’s and less of the negative ones? Let's commit to breaking down these barriers of stigma and fostering a healthcare environment where everyone feels valued and respected. The challenge is ongoing, but with concerted effort and collaboration, we can make significant strides towards reducing isolation and embracing inclusion.

You can follow Dr Elizabeth Deveny on LinkedIn.