‘I felt too whakama to go to the doctor’ – how feelings of shame stop people seeking healthcare

Health services struggle to provide affordable and nondiscriminatory healthcare to Maori, Pacific, disabled, and rainbow whanau, according to the latest NZ Health Survey.

Nearly a quarter of Maori reported unmet primary care needs over the past year, signalling deep cracks in the system.

It is important we understand these gaps in healthcare access and why healthcare remains out of reach for so many. Our earlier research suggests this is about more than cost and poor logistics.

To investigate the complex reasons behind unmet healthcare needs in Aotearoa New Zealand, we have launched a new research initiative, using the online platform Wahi Korero to provide users with an anonymous space to share their experiences with the health system. Early results suggest systemic biases that prevent equitable access and stop some people from even seeking healthcare.

Examining barriers to healthcare

The project invites people to share their stories in response to the prompt “I felt too whakama to go to the doctor”.

Whakama refers to a feeling of embarrassment or shame that can deter people from seeking necessary healthcare. The research explicitly seeks to uncover these health service experiences as a way to improve health outcomes and reduce persistent health inequities.

The experiences of those who do not seek care tend to be absent from conventional health and consumer experience surveys. Rather than focusing on times when care was insufficient, our research invites people to anonymously share their stories of when care was not even sought.

This is a new approach to existing understandings of unmet need. Unlike healthcare service reviews, our research deliberately seeks the voices of people who forgo care.

The telling of unmet need

The stories already submitted to Wahi Korero expose the complexity of unmet needs and the multiple barriers preventing equitable access to healthcare.

One participant shared:

In my family, we’ve been taught to believe that you basically had to be dying before you’d even think about going to the doctors. There’s a GP shortage, they’re stressed and underfunded.

Another recounted a traumatic experience disclosing family violence and being dismissed by their GP:

She made it sound so easy. People are constantly told to talk about these things and reach out for help. But it can make it worse if professionals don’t actively help.

A trans participant described their experience of misgendering:

When I called to make an appointment with the GP I tried to give them some info so they didn’t misgender me. I told the lady on the phone my preferred name. She said that wasn’t possible, I had to go by my ‘real’ name. So I didn’t show up for the appointment.

The stories also shed light on the challenges people with invisible illnesses and neurodivergence face. One participant shared their struggle to receive an accurate diagnosis:

I’ve only just now received an ADHD diagnosis after years of being told I had major depression, including a three-day hospitalisation at a psychiatric ward.

Empowering voices and driving change

In addition to contributing their own stories, participants and readers can access and learn from the experiences shared by others on the Wahi Korero platform. This collective storytelling fosters a sense of community, reduces feelings of isolation and promotes understanding of the diverse challenges people seeking healthcare face.

By reading these stories, people can see that they are not alone in their struggles. It can be empowering to know others have faced similar challenges and that there is a growing movement to address these systemic issues.

Our research is more than data collecting. It is an opportunity to build understanding that makes health systems more responsive to people’s realities. Behind the statistics are untold stories of people who feel whakama and don’t access medical help, worsening symptoms and preventable emergency department visits.

Our research aims to generate insights that will guide policy and practice, ultimately improving health outcomes and reducing persistent inequities.

We are seeking more participants to share their stories, in response to the prompt “I felt too whakama to go to the doctor”. For more information, please visit our Wahi Korero site.

Chrissy Severinsen, Angelique Reweti and Mary Breheny received a Health Research Council Explorer Grant for this research.

Angelique Reweti and Mary Breheny do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.