The experiences of people diagnosed with severe mental illness and colorectal cancer: A qualitative study

Abstract

Objectives

There is evidence that people with severe mental illness (SMI) are more likely to be diagnosed at a later stage and die earlier from colorectal cancer (CRC). The purpose of this study is to understand the barriers to effective CRC diagnosis and treatment for this group.

Methods

Five people (four people diagnosed with CRC and SMI and one carer for a person in this group) participated in interviews about their experience of CRC diagnosis and treatment. Interviews were analysed using NVivo to identify key themes.

Results

We identified four key themes: diagnostic overshadowing, fear, practical access and interpersonal partnerships.

Conclusions

Participants in this study were less likely to have their healthcare needs met because of discrimination and unmet needs associated with their diagnosis of SMI. This is not a new finding – many other mental and physical health researchers have identified this problem. But this study enables people who have lived through the challenge of this experience to share their perspective. Consequently, we recommend that future research focus on practical strategies to minimise discrimination among health professionals and policymakers and identify solutions to address the disproportionate barriers people diagnosed with SMI encounter regarding CRC testing.

Mortality rates for people who have a diagnosis of severe mental illness (SMI) – an experience of mental illness that is enduring, significantly impairs functioning and requires ongoing treatment, care and support ¹ – are significantly greater than the general population. Much of this disparity is due to chronic physical diseases such as cancer. ²

Previous research in Australia and Canada has shown that a range of cancers have higher mortality rates for patients with SMI despite the cancer incidence being similar to people without an SMI diagnosis.^3,4 Of the cancers investigated in these previous studies, colorectal cancer (CRC) mortality rates were among the highest (second only to lung cancer) among people with SMI and CRC patients with mental ill health were 60% more likely to die from their CRC than their counterparts despite the incidence rate being very similar.^2,4–6 Access to effective cancer screening and diagnosis may be the cause of this disparity. It has been found that people experiencing SMI are less likely to undertake screening for cancer (including CRC, breast cancer and cervical cancer) and this places them at a higher risk of premature death.^7,8 Post diagnosis cancer care is also a factor, with evidence suggesting that people with SMI continue to be at a higher risk of lower treatment success.^9,10

In Australia, the National Bowel Cancer Screening Program (NBCSP) was implemented for all Australians over the age of 50 years since 2006. ¹¹ At the age of 50, Australians receive a kit in the mail to collect stool specimens that are returned for testing by a faecal occult blood test (FOBT) to identify CRC.^7,11 From 2015, Australians over the age of 50 have also been invited to participate in such testing every 5 years.^7,11 In 2011, the effectiveness of the NBCSP in reducing morbidity and mortality rates in the general population, as well as the impact of early CRC diagnosis, was evaluated. ¹² It compared differences in CRC outcomes between individuals aged 50–69 years who were diagnosed with CRC but were not invited into the NBSCP and these outcomes were compared to data linkage from the NBCSP register, cancer registries and the National Death Index (NDI).^7,12 This evaluation found a roughly 15% higher risk of CRC-related death for people who were not participating in the NBCSP. ¹²

However, the NBSCP may be less accessible for certain populations, including those of lower socioeconomic status, those with poor literacy skills, those who speak English as a second language, and those living in rural areas. They therefore may be more vulnerable to morbidity and mortality associated with CRC. ¹³

We have previously reported that people with psychiatric conditions and CRC are significantly more likely to die from CRC than people without psychiatric illness, and less likely to participate in the NBSCP and other forms cancer screening. ¹⁴ As a part of this research, we aimed to undertake qualitative interviews with people with experience of SMI and CRC and people in carer, advocacy or peer support roles who can provide their perspective on the barriers faced by people with SMI to gaining timely screening, diagnosis and optimal care.

Methods

This study is the qualitative component of COSMIC, a retrospective cohort study based on the analysis of de-identified linked administrative data. A pre-study protocol was published (Protani et al. 2021) and the study was prospectively registered with the Australian and New Zealand Clinical Trials Registry (ACTRN12620000781943; 3 August 2020). The University of Queensland Human Research Ethics Committee (2019000296) and the Australian Institute of Health and Welfare Ethics Committee (E2019-5-1108) approved the study. 

Our theoretical approach to this sub study was a blend of constructivist epistemology with critical theory ¹⁵ because our goal was not only to understand the lived experience of participants but also to advocate for change in how healthcare systems engage with people with complex needs.

Researcher reflexivity

The design and conduct of this study was led by a social work and a lived experience academic. The broader team included a psychiatrist with experience working with people with co-occurring cancers and schizophrenia, a cancer epidemiologist, and a public health physician and psychiatrist. All share a commitment to lowering the mortality rates of people with SMI from preventable causes.

Participant selection

Participants were recruited online and at relevant conferences via the distribution of a flyer. Recruitment also took place via networks including individual organisations, established links with clinical mental health and community support service providers, as well as consumer advocacy bodies. We were unable to further broaden or extend our recruitment processes into clinical services in a formal capacity because of the small-scale nature of the project and limited resources for navigating additional human research ethics and governance procedures. The participant recruitment window was between 1 April and 31 December 2024. We were unable to reach our target of 15 participants – we speculate that this may be because the sensitivity of the study topic made it unattractive to people who may have been eligible and the timelines associated with the research. Consequently, we had to take a flexible approach to saturation, given the qualitative methodology of this study, ¹⁶ and the common practice of evaluating sample size during recruitment and analysis, rather than before commencing the study. ¹⁷ While we did not meet our initial target, we were satisfied that a smaller sample size was sufficient to enable common themes to emerge.

Eligibility criteria

To be eligible, participants met all the following criteria:

• Speak conversational English

• Be 18 years or older

• Been diagnosed with SMI and CRC OR be a carer for someone with both diagnoses

• Has given consent to participate

Data collection

We conducted semi structured individual interviews online (using zoom), to ensure participants from all over Australia could participate. The interviews were co-facilitated by a social work researcher and a lived experience researcher (LB and TZ) to enhance engagement and safe discussion of this sensitive topic.

The interview schedule (suppl. 1) included questions about the person’s experiences accessing testing and treatment of bowel cancer, and how their mental health diagnosis (or that of the person they care for) or mental healthcare practitioners impacted their experience of or access to care. Questions were aimed at eliciting information that could be used to support service development in access to colorectal cancer screening and treatment for people diagnosed with SMI.

We did not collect some information (e.g. stage of CRC and date of diagnosis) because of the highly sensitive nature of these questions and to diminish any sense of a power dynamic between researchers and participants, who likely had repeated their medical history many times to different professionals. We also note that the collection of demographic data in the context of small-scale qualitative research is a contested practice, with some advocating for a flexible and participant-led approach to identity. ¹⁸

Data analysis

Interviews were transcribed by a professional transcription company. Once transcription was completed, transcripts were uploaded into NVivo and researchers thematically analysed them following the thematic analysis process described by Braun and Clarke. ¹⁹ This was a desirable framework because it offers an approach that is flexible to the perspectives shared by participants. We began by thoroughly reading through the transcripts followed by generating initial codes using Nvivo. We then carefully examined the data identifying recurring ideas, concepts and perspectives. This was completed independently by two researchers (TZ and JDN), who then met with the project leader (LB) to achieve consensus on the key themes through grouping of codes into broad concepts. To support the analysis and reduce bias, participants were sent a summary of the themes for their comments. Only one participant requested a change, and this was to address a transcription error.

Results

Five participants were recruited to the study. One participant was below the age of 50, so had not been a participant in the NBCSP. Four participants were women. One participant was a carer. Several participants were also consumer advocates and had experience as peer support workers. No participants or potential participants withdrew consent at any point during the study.

Because of the small sample size, we have refrained from providing demographic information in more detail than the brief summary above. We were concerned that including demographic information decreased the anonymity of participants.

Findings

The analysis identified four key themes and these themes are presented below.

Diagnostic overshadowing and discrimination based on mental health diagnosis

Most participants felt their physical symptoms were overlooked or dismissed by healthcare professionals because of their mental health history. One outlined a specific example of when their CRC symptoms were dismissed on the basis of their mental health diagnosis:

“‘They were saying, oh, it’s all in your head. […]Have you been taking your medication, meaning my psychiatric medication? You need to talk to your psychiatrist about this…’ It was just a real overshadowing of my health issues by my mental health issues. When they went back in, sure enough, the polyps were there.” – Participant 1, woman, consumer

Another participant shared that clinicians were not always willing to investigate the things that were important to them, resulting in a need for self-advocacy:

“You have to fight the specialists – Participant 3, woman, consumer

In addition to this, many participants and their doctors attributed symptoms to side effects of psychiatric medication, delaying further investigation. One participant said:

“Very often, the medication makes people constipated, and [doctors] will write that off to being medication when it could actually be something else forming. […] They’re attributing their symptoms to other things because of the amount of side effects that people might be getting from medication.” – Participant 2, woman, consumer

Participants identified negative experiences with clinicians. Many participants experienced discrimination in medical settings due to their mental health conditions, leading to a lack of trust in doctors and hesitancy to seek care. The carer participant said:

“The doctor's trying to say ‘have you been taking your bipolar medication?’ He wasn't there for his bipolar. […] So, thinking back, I think it could have been possible that my dad was hesitant to reach out with what he was noticing with his bowel movements and stuff because of the past treatment.” – Participant 4, woman, carer

One participant also expressed frustration about a lack of accountability for poor treatment and discrimination:

[doctors] “need to recognise and be held accountable for their discrimination because they’re not being held accountable. Those of us with lived experience can’t really do it, and we can’t sue them. We don’t have the money. We’re too afraid to step back into courts. All of that stuff is more frightening. It’s easier for us to fade away and die from bowel cancer than the possibilities that could happen to us back in those systems.” – Participant 1, woman, consumer

Fear shaping Participant’s healthcare experiences

Fear played a major part in the experiences of the participants, and often influenced their decisions. Fear was associated with the testing process, with being diagnosed, and with treatment. The findings suggest that the fear participants experienced related to unmet needs associated with screening and diagnosis. Participants drew attention to how psychosocial dimensions such as their previous experience of the health system, past trauma and poverty were relevant to the process.

Participants explained that in their experience many people are experiencing financial stress and a lack of income, thus there is reluctance to open mail as it might contain another bill. This is significant, as bowel cancer testing kits are distributed by mail in Australia. One participant said:

“But I think that it’s just – people find mail is frightening, for a lot of [people], because we can’t usually afford the bills that come.” – Participant 1, woman, consumer

One participant outlined how the fear associated with mail could lead to people not opening testing kits:

“If someone is stuck living on the DSP and they are living hand to mouth all the time, they can't bear the thought of looking at another bill. They won't necessarily see that it's got bowel screening on the front of it.” – participant 2, woman, consumer

Participants experienced fear associated with diagnosis. One said:

“I suppose sometimes they might be scared to do it, trying to - getting the result. I'll be honest, I was scared to have the test […] But just getting that phone call saying ‘we need to see you’.”- Participant 5, man, consumer

Another shared a similar experience of fear when being diagnosed:

“I hear the word cancer, and the first thing I think is ‘I’m going to die’. We live in a society and medical world where it's a lot better than getting cancer 30 years ago. It still instils a lot of fear.” – Participant 4, woman, carer

Fear of medical settings and procedures, particularly among those with past trauma, was a common barrier to receiving a timely diagnosis and treatment. One participant said:

“For those of us that have been sexually abused as children, any focus on that area is really difficult to deal with… My colorectal specialist asked me about scars, and I didn’t want to talk about it. It was triggering.” – Participant 1, woman, consumer

Speaking more generally, one participant reflected on their journey of managing intersecting physical and mental health concerns, sharing:

“So many times, I've just been like, oh my God. I just can't do this fight anymore.” – Participant 3, woman, consumer

These comments from participants indicated that fear has a role in how they engaged with all aspects of bowel cancer screening and treatment. The experience of fear relates to socio economic disadvantage, histories of trauma and lack of support, and these complex, intersecting issues form barriers to receiving care.

Practical access to testing and treatment for colorectal cancer

Other barriers preventing participants from obtaining a diagnosis involved practical issues such as the costs of testing and medical treatment, having stable housing and a private storage facility, availability of informal supporters and geographical, comprehension and language barriers.

On specific barriers, participants had several concerns regarding access to initial testing:

“It’s much harder in most country areas. It’s much harder”. – Participant 1, woman, consumer

“You also need a fridge”. – Participant 2, woman, consumer

“There was a lady I was working with, she can hardly speak English, and there's not enough information on the packs in their own language. – Participant 5, man, consumer

Some participants struggled with understanding or following medical instructions, especially those related to screening tests. It was suggested that pictorial instructions might be useful. One said:

“I think the letters are a little bit over complicated perhaps. Certainly, for people who might be older or people from CALD backgrounds or somebody who's not very well as well, with a combination perhaps of all three, elderly, CALD background with a mental illness. It's possibly just too much. I don't know. Yeah, so perhaps pictorial instructions might be better.” – Participant 2, woman, consumer

Practical challenges included lack of transportation and support. Thus, many people lacked the resources needed to attend medical appointments and get treatment. One participant said:

“You have to have someone pick you up, you can’t drive, and you have to have someone drop you off. It is problematic. I relied on people taking time off work to take me, and it’s not always convenient to do.” – Participant 2, woman, consumer

And another said:

“For a lot of us who are voice hearers, and a lot of us without family support or without good supports around us, it’s just all too hard.” – Participant 1, woman, consumer

Cost was a significant barrier, especially for those on pensions or unemployment benefits. Many medical tests or procedures were described as expensive and out of reach for some participants.

I have a choice, I could be in the private system. I think it just terrifies me that we have outsourced healthcare almost completely to those who can afford it. – Participant 3, woman, consumer

Interpersonal partnerships with clinicians

Positive interpersonal partnerships were seen as crucial to an early diagnosis and effective healthcare. One participant particularly highlighted the role of having a reliable GP who listens attentively and values patients’ concerns. This was considered essential for effective medical care:

“I think finding a GP that you can trust—finding a GP that does take you seriously—is all I can really think of.” – Participant 4, woman, carer

Conversely, one highlighted how having a person supporting and advocating for them managed some of the discrimination they experienced from GPs:

“I have university degrees now, and I’m an intelligent person. But I have to have an advocate with me when I go to these doctors because otherwise they just brush me aside.” – Participant 1, woman, consumer

Others spoke of wanting relationships where their health needs were supported in a holistic way by service providers such as case managers or peer support workers. One said:

“If they have somebody walking, you know, a peer with them perhaps supporting them and just saying ‘it's really important that you get this checked. We can help you organise transport even if it's community transport’ or even if it's your case manager picking you up the next day if there really isn't anyone, that should be seamless.” – Participant 2, woman, consumer

Another expressed the necessity of family support:

I couldn't envision going through something on your own. I definitely think you need people to lean on to pick up the slack—not just moral and emotional support, but also physical…. I think family support's vital, and I feel really sorry for people that don't have that. – Participant 4, woman, carer

These comments suggest that caring interpersonal relationships with both health care providers and informal supporters were helpful to support the process of diagnosis and treatment of CRC for people with severe mental illness.

Discussion

The experiences of participants in this study illustrate the ways in which people with severe mental illness may be disproportionately impacted in CRC testing, diagnosis and treatment. For participants, experiences related to their diagnosis of SMI – trauma, stigma, discrimination – and other social determinants including social exclusion and poverty meant that they had specific needs that the NBCSP does not address.

This is consistent with findings from previous studies, which suggest that people with mental and physical health concerns face barriers to having their health needs met^7,20 and may be subject to dismissal and discrimination from health professionals. ²¹ Literature on epistemic injustice against people living with mental health diagnoses mirrors our findings. An article by Hultman and Hultman ²² has highlighted the epistemic injury felt by people living with mental and physical health concerns by ‘health care professionals’ inclination to mistrust and devalue experience-based knowledge provided by people with experience of disability and mental illness or their family members’.

Our findings suggest that people with SMI require more support to access testing and treatment for CRC. Comments from participants indicate that a range of health care providers, including GPs, psychiatrists and oncologists, hold assumptions about people diagnosed with SMI that may contribute to a lack of adequate care and treatment. Social determinants of health are important factors alongside people’s experience of trauma, stigma and discrimination throughout the process of testing, diagnosis and treatment. Equally Well ²³ is an example of initiatives in Australia attempting to ‘close the gap’ in life expectancy and improve the physical wellbeing of people living with mental illness and our findings underscore the importance of these initiatives. Kirkbride et al ²⁴ argue that putting social justice and the social determinants of mental health at the centre of all healthcare interventions will reduce the inequalities this group face, including in their physical health.

Addressing the life expectancy gap for people with SMI is complex and requires a range of intersecting interventions. This study has indicated the importance of raising awareness, breaking down practical and systemic barriers and encouraging compassion and genuine concern about the years of life that are lost unnecessarily by so many people when action is stalled.

Limitations

This was a relatively small study that did not meet recruitment targets. It is not designed to be generalisable but our small number of participants provided a depth of perspective that we believe is important to hear. Recruitment was challenging but understandable considering the various participation barriers faced by people dealing with both mental and physical health issues, and the sensitive nature of the study topic. Digital exclusion of people with SMI may have influenced low recruitment, although a recent study has suggested this inequality gap has lessened due to increased uptake of digital services prompted by the COVID-19 pandemic. ²⁵ Further, online participation meant that participants could not be excluded due to geographic location.

As identified in the introduction, our previous work has found people with psychiatric conditions and CRC are significantly more likely to die from CRC than people without psychiatric illness^5,7,26 – clearly, we could not interview people who had died and their carers may not want to reflect on this time in their lives. This study is likely to overrepresent people who were able to access timely testing diagnosis and treatment and those who were engaged with the organisations we relied on for recruitment.

Conclusions

This paper builds on evidence to suggest that current health systems are underserving people diagnosed with SMI. It most importantly provides a lived experience perspective and enables the voices of those directly impacted to be heard. Further research should focus on specific recommendations for healthcare policymakers and professionals to enhance awareness, improve practice and make the adaptations and accommodations necessary for current processes to be more inclusive of people with severe mental illness.

Supplemental Material

Supplemental Material - The experiences of people diagnosed with severe mental illness and colorectal cancer: A qualitative study

Supplemental Material for The experiences of people diagnosed with severe mental illness and colorectal cancer: A qualitative study by Tessa-May Zirnsak, Julia De Nicola, Steve Kisely, Dan Siskind, Melinda M Protani, Lisa Brophy in Australasian Psychiatry