ABSTRACT
This study aimed to explore the experiences of women with mental illness who had also experienced breast cancer diagnosis and treatment, in particular, to identify barriers and facilitators to cancer treatment. Semi-structured interviews were conducted with ten breast cancer survivors who had had contact with secondary mental health services prior to their cancer diagnosis. Thematic analysis was used to identify key themes. Participants described positive experiences of cancer treatment, expressing surprise at both how well they coped with diagnosis and treatment and how well they were treated by services. Many contrasted this with their less positive experience of mental illness and mental health services. The women interviewed were active participants in their cancer treatment and did not report feeling stigmatised because of their mental health experiences. A lack of connection between cancer and mental health services was described, but this was not regarded as necessarily a bad thing. This study begins to counter the stereotypes of the difficult patient or the person unable to understand and cooperate in their own care which are prevalent in the literature. Further work is needed to understand the reasons for disparities in cancer outcomes.
Introduction
Cancer is an important contributor to reduced life expectancy among people with experience of severe mental illness (Lawrence et al. Citation2013; Nordentoft et al. Citation2013). In New Zealand, cancer is the most common cause of death before the age of 65 in women using mental health services (Cunningham, Peterson, et al. Citation2015). Cancer diagnosis among people with a history of mental illness occurs at similar rates to the general population, but cancer mortality is higher (Kisely et al. Citation2015; Iglay et al. Citation2017). Diagnosed mental illness is also associated with poor cancer survival (Batty et al. Citation2012; Chang et al. Citation2014; Cunningham, Sarfati, et al. Citation2015). Factors contributing to disparities in cancer survival include delayed cancer diagnosis, the high burden of comorbid physical health conditions, inequalities in cancer treatment receipt (Cunningham, Sarfati, et al. Citation2015; Kisely et al. Citation2013) and ‘differential access to the opportunities and social conditions that maximise health outcomes’ (Weinstein et al. Citation2016, p. 147).
Recent literature (Howard et al. Citation2010; Chou et al. Citation2016) has identified attributes of those with mental illness and cancer, particularly those with severe mental illness (especially schizophrenia), mainly from the perspective of the clinician (Druss et al. Citation2002; Inagaki et al. Citation2006; Farasatpour et al. Citation2013; Koroukian et al. Citation2014; Mahabaleshwarkar et al. Citation2015). These attributes include cognitive, behavioural and social difficulties (Druss et al. Citation2002), violence (Farasatpour et al. Citation2013), lack of understanding, being uncooperative (Inagaki et al. Citation2006), lack of decision-making capacity (Hodgson et al. Citation2010) and poor adherence to treatment (Koroukian et al. Citation2014).
Literature has also highlighted the difficulties people with experience of mental illness may have in navigating the medical system (Cole and Padmanabhan Citation2012) and receiving access to care and to quality care (Mahabaleshwarkar et al. Citation2015). This is even more so for people with more severe mental illness (Mahabaleshwarkar et al. Citation2015)
Research that prioritises the voice of experience is increasingly acknowledged as important in cancer care and in services for people with experience of mental illness (Peterson Citation1998; Tsianakas et al. Citation2012) but largely absent where the two experiences intersect (Howard et al. Citation2010). Studies have elicited mental health service user perspectives in identifying the barriers and facilitators to cancer screening (Barley et al. Citation2015), but none that we are aware of relate to cancer treatment.
In order to understand more about the poorer outcomes for this group, our aim was to explore the experiences of women with mental illness who had also experienced breast cancer diagnosis and treatment, in particular, to identify barriers and facilitators to cancer treatment. Breast cancer was chosen because it is one of the most common cancers amongst New Zealand women, and because a recent quantitative study had found worse breast cancer outcomes among women with a history of contact with mental health services in New Zealand (Cunningham, Sarfati, et al. Citation2015).
Methods
In this exploratory, qualitative study, we decided to take a pragmatic approach (Savin-Baden and Howell Major Citation2013) to meeting the research aim i.e. ‘an approach that draws upon the most sensible and practical methods available in order to answer a given research question’ (Savin-Baden and Howell Major Citation2013, p. 171). This approach was chosen because we wanted to hear the voices of women with mental illness. We used narrative methods to interview 10 women with experience of mental illness who had also been diagnosed and treated for breast cancer. The women’s stories would enable us to shed light on the experience of mental illness and breast cancer, helping us to understand factors of the treatment journey that could be problematic or positive for women with experience of mental illness. This sample size, while small, was adequate for an exploratory study such as this (Ritchie et al. Citation2003).
This study had ethical approval from the Northern B Health and Disability Ethics Committee (Reference: 15/NTB/88). Participants were recruited through mental health service providers, NGOs and service users’ organisations by word of mouth and advertisement. Most of the interviews took place in the Wellington region, but we also did three interviews in other parts of New Zealand, with women who had heard about the study and made contact with the researchers. All the interviews were undertaken by one or other of the authors, face to face with the participants.
A semi-structured interview, approximately sixty to ninety minutes long, was conducted with each participant in the first half of 2016. The interview was structured around open-ended questions about the use of services. All interviews were digitally recorded, and transcribed by a contracted transcriber.
Interviews were loosely structured and focused on the women’s stories of their cancer diagnosis and treatment, and their pathway through care.
We used a narrative thematic analysis approach (Patton Citation2002), as a way of analysing the gathered stories, to identify commonalities and differences among participants’ responses. Transcripts were entered into NVivo 11 (a qualitative analysis software programme) as written text for analysis. All texts were read and compared by both researchers, and all patterns and themes verified by having both researchers examine and code them, having reached consensus. Themes and illustrative quotes were identified by the mutual agreement of both authors. Analysis was an iterative process, involving several passes using the different lenses garnered from our own interpretations of the data and from the literature. The researchers worked together on the data analysis, cross checking codes and themes.
Two experts (one in breast cancer and one in breast cancer and mental health, encompassing clinician and patient perspectives) were appointed as advisors to the project and consulted regularly.
Results
Ten women were interviewed for this project. Their age ranged from mid-thirties to seventies at the time of interview. The time since breast cancer diagnosis ranged from twelve years prior to very recent. With the exception of one participant, all had first experienced mental illness at least a decade prior to their cancer diagnosis. For this research, while no formal mental health diagnosis was requested, participants talked about their experience of mental illness and mental illness service use, and most recounted the diagnoses they had been given by the mental health services. The range of diagnoses included depression, anxiety, bipolar disorder, schizophrenia, personality disorder, postnatal distress, and obsessive-compulsive disorder, and half of the women reported experience of psychosis. All had been under the care of specialist secondary mental health services at some time, with seven of the ten women reporting hospitalisation for mental illness, two under the Mental Health Act. Five of the women were under the care of a psychiatrist at the time of their breast cancer diagnosis and another two were being cared for in primary care but continuing to take psychiatric medication at cancer diagnosis.
All the participants had had surgery for their cancer, ranging from lumpectomy to mastectomy and node clearance, with four requiring repeated surgeries. Six had undergone radiation therapy, and two had had chemotherapy, with another two being offered and declining chemotherapy treatment. Five had received hormone treatment (tamoxifen). Most had had or were undergoing curative treatment, while one was having palliative treatment. While two women reported seeing a private psychiatrist, none reported receiving private breast cancer treatment, except for one instance of surgery received in a private facility. It was not possible to establish whether the women interviewed had received standard care for their breast cancer.
The experience of cancer
When the majority of the women contrasted their experiences of coping with cancer and mental illness, they described cancer as the less frightening experience. Moreover, the cancer was described as less frightening because of their experience of mental health problems, in particular suicidality.
I said to my Doctor, what’s the worst thing that can happen, I can die … . [Participant 4]
While several women mentioned concerns about endocrine therapy and chemotherapy side effects, participants reported that cancer had less impact on their lives than mental illness. Moreover, several women reported positive effects on their mental health, and one reported that she no longer felt suicidal after the cancer diagnosis. Her experience of mental illness coloured how she perceived and dealt with the breast cancer diagnosis.
I went from […] trying to kill myself every five minutes to just dealing with cancer […] I thought if I can’t kill myself this ain’t going to kill me. [Participant 4]
I could […] get support for cancer openly … . Where I couldn’t for mental, any kind of mental health challenges at all. [Participant 5]
Interactions with services
Three of the ten women had had their cancer diagnosed through routine mammographic screening, while the other participants had noticed abnormalities or lumps themselves. Some participants reported that they had been attending screening but had not had their cancer picked up, or were outside the screening age range (in New Zealand 45–69 years). One participant described a lack of self-care and “not giving a stuff” in the period prior to cancer diagnosis which had resulted in her not attending routine mammographic appointments and may have delayed her diagnosis.
Participants reported positive experiences in their treatment by cancer services. Many contrasted these to more negative experiences with mental health services.
Cancer Service I’d give an A to, yeah. Mental Health Service I’d give a D minus. [Participant 3]
The treatment was very different, very different. [Participant 5]
People expressed surprise at being treated so well by the cancer services, and did not feel stigmatised due to their mental illness. Several also reported having their mental health concerns taken seriously by cancer clinicians when they raised them.
It always comes up at the meds point, are you taking any other meds? So once you say lithium you’re … immediately having a conversation about that. You know they’ve been good. [Participant 3]
One participant talked about not initially feeling that her oncologist understood the importance of her mental health treatment continuing, and noted the usefulness of having her partner advocating with the oncologist on her behalf.
[My partner] luckily had been listening where I hadn’t and he was going ‘hold on, because what is going to happen to this lady’s psychiatric position with chemotherapy … .’. [Participant 10]
From the beginning he would say ‘Well, how do you deal with information? Do you want just some, do you want some graphs or do you want some research?’ [Participant 1]
… there wasn’t a lot of choices to make really […] you are either going to have treatment or you are not. [Participant 8]
Disconnection between services
The participants did not report difficulties with or concerns about different arms of their health services working together. Rather it appears that they did not work together at all. Most reported a disconnect between cancer and mental health services, describing them as “completely separate” with the link only happening through the patient, or services only communicating “when they had to”. It seemed that both types of service relied on the woman being the hub through which all information would pass to inform other services.
For most of the women, there was a sense that the less involved the mental health services were in their care, the better, and they did not mind a lack of communication. One participant seemed to feel empowered by being in control of the information that was relayed to other services involved in her care. When asked if she felt if more communication between services was desirable, she replied “If it didn’t stop communication to me”.
Occasionally the GP or another clinician would act as a ‘broker’ to ensure that the woman was receiving appointments or test results, or have a coordinating role, but this was not usually the case.
Several participants talked about the difficulties they and their doctors faced in managing multiple conditions and multiple medications, and pointed out that as well as breast cancer and mental illness they also had a number of other health problems to manage. Where this was the case, GPs played a more central role.
I’ve got that one good GP and he’s kind of central to whatever happens really [… .] ‘Cos I’ve got two stents, so I was taking heart medication […] [my GP] did the monitoring of all of that. [Participant 1]
[My GP] is very good at phoning me and telling me various things … we have a laugh about things and what have you … he always gives me a big hug and like he does my blood pressure and makes sure my blood pressure is not up […] I was going into cardiac um, meltdown at one stage before the breast. [Participant 10]
Discussion
Three themes were identified in this study: the experience of cancer; women’s interactions with services; and the disconnection between different health services. When the experience of cancer treatment was compared to the experience of treatment for mental illness, mostly participants were more favourably disposed towards cancer services. Generally, women reported being treated well and feeling less stigma than they had in relation to their experience of mental illness.
Participants found cancer treatment could be empowering, especially compared to treatment for mental illness. Participants were given information, and were involved in decision-making. They felt in control, even when there were few choices to be made (e.g. treatment or no treatment). In contrast, treatment for mental illness is often seen and experienced as disempowering and coercive, with people lacking a voice in their treatment (WHO Regional Office for Europe Citation2010).
The lack of communication between mental health, cancer and primary health services may be contributing to poor outcomes, but in this case, many of the participants saw it as positive. They were in control of who received what information, and saw it as a safe guard against potential discriminatory attitudes.
Much cancer literature focuses on patient factors (as opposed to provider or system factors) to explain poor outcomes associated with cancer in people with mental illness. Mental illness stereotypes such as people being incompetent to consent, difficult to deal with, or non-compliant with treatment are often described as barriers to treatment (Inagaki et al. Citation2006; Cole and Padmanabhan Citation2012). Yet the women in this study, all of whom had had significant experience of mental illness, were empowered, resilient, able to comprehend and consent to treatment of their cancer, and in some cases to question treatment plans. This was true even for those with the most severe and disruptive of mental health concerns. This is in keeping with a study from the UK demonstrating that breast cancer treatment including chemotherapy can be successfully delivered in a similar fashion to women with and without schizophrenia (Sharma et al. Citation2010).
For the most part, women’s mental health remained good during their cancer treatment. Their resilience dominated despite any fears that they might have of being susceptible to deteriorating mental health.
Other patient factors such as drug interactions and the impact of comorbid medical illness are described in the literature (Howard et al. Citation2010). Both of these were mentioned by the participants as complicating factors in their treatment, requiring extra clinical input from outside the cancer treatment team, but were not seen as factors preventing cancer treatment.
There is evidence that cancer treatment receipt differs by mental health status, with people with a history of mental illness being less likely to receive treatments such as surgery and chemotherapy (Dalton et al. Citation2007; Chang et al. Citation2013; Bergamo et al. Citation2014). Other New Zealand work has found that non-psychiatric health services are a significant contributor to the discrimination experienced by people with mental illness (Peterson Citation2005). Generally, our study participants did not experience treatment providers as discriminatory. For the most part, they felt any concerns, including mental health concerns, were taken seriously. However, we cannot tell from this study whether, despite not experiencing any overt discrimination, the women received the same treatment as those without experience of mental illness.
Disconnect was noted in terms of co-ordination and communication between health services. However, there was disagreement about whether more connection between services was desirable. Some of the women in our study were comfortable with being the information hub for their mental health, cancer and primary health services, while others were grateful that a primary care provider or other clinician was able to take a coordinating role. None were specifically keen for more communication to occur between providers, which suggests that we need to think carefully about the utility and form of any more contact between providers, as it has the potential to have negative consequences for the women themselves.
These results contrast somewhat with other New Zealand work which suggests that integration of care and changing the siloed nature of the health system are important for improving the care of patients with multiple long term conditions (Signal et al. Citation2017).
Discrimination may still be occurring and contributing to cancer survival differences, despite lack of evidence cancer services discriminated against the participants. At one level, it may be that the discrimination does not manifest itself in day to day interactions. Or it may be that women have experienced such poor treatment from mental health services, that anything above that is acceptable.
Another concern is that a diagnosis of cancer may bring on an episode of mental illness (Howard et al. Citation2010). We saw no signs of this in our study. Indeed, almost all the participants reported that they were surprised at how good their mental health was after cancer diagnosis.
A finding from the literature is contradicted – that women with mental illness are seen as unable to consent to cancer treatment (Cole and Padmanabhan Citation2012; Meyer et al. Citation2013). The women in our study not only felt they could consent; they felt empowered by the process.
Strengths and weaknesses
As other studies have found poor survival and a deficit in cancer care among women with mental illness, we expected that cancer services would be found to be providing less than adequate care for women with experience of mental illness. The qualitative study design was robust enough to deal with the opposite situation.
While only ten women were included in this study, we were approaching saturation in our data. We sought to maximise recruitment by extending the study area and recruitment time period. The study participants were volunteers who were interested in sharing their experiences with the researchers. By advertising for volunteers we ran the risk of attracting women who had better or worse experiences than the average population of women with breast cancer and mental illness. In particular, the women who responded could have been a more resilient group, with greater survival than those recruited through a cancer or mental health service. In the end, our sample encompassed a range of experiences, but we have no comparison to women who did not come forward.
Conclusion
This study provides an important piece in the puzzle of understanding the disparities in cancer survival associated with a history of mental illness. It begins to counter the stereotypes of the difficult patient or the person unable to understand and cooperate in their own care which are prevalent in the literature. We found that even where women had experience of severe mental illness with psychosis and a serious cancer prognosis, women were still able to advocate for themselves and participate in decision making around their cancer care.
More research is however, needed to understand the reasons for the large cancer survival disparity between women with experience of mental illness and those without. A population-based comparative study of cancer treatment differences will be an important next step, in order to capture the complete range of experiences of mental illness and cancer, and identify differences associated with mental illness.
Acknowledgements
The authors acknowledge Dr Chris Walsh and Sandy Lister for their advice to the project.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Additional information
Funding
References
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