Barriers to cancer care for people with significant mental health difficulties: What healthcare staff say?

Despite similar rates in cancer morbidity, patients with comorbid significant mental health difficulties (SMHD) experience higher mortality rates. This population has largely been neglected in cancer care research. Little is known about how to improve cancer outcomes for patients with SMHD. The aim of this research is to explore the views of healthcare professionals concerning the provision of cancer care to individuals with SMHD in an Irish context.


| Participants
Participants were recruited through purposeful sampling from three acute hospitals in Dublin between January and April, 2017. Invitations were sent via email to several healthcare professionals providing care to people with SMHD and cancer. Twenty-eight individuals consented to participate in the study (85.71% female). The sample consisted of clinical nurse specialists (n = 8), clinical psychologists (n = 6), medical social workers (n = 4), oncologists (n = 4) and psychiatrists (n = 6).
Participants' ages ranged from 30-62 years and they had between 8 and 34 years of experience in their respective roles.

| Context of healthcare system in Ireland
This research was conducted with HCPs working in the Irish health system. In Ireland, healthcare is accessible through the public or private health system, though long waiting lists often exist for public patients. Individuals with psychiatric diagnoses are commonly supported on a continuous basis in community or out-patient hospital settings and by primary care professionals.

| MATERIALS
A semi-structured interview schedule was adapted from previous research conducted by Irwin and colleagues (see Supporting Information S1). 10 Questions covered all stages of cancer treatment, including screening, diagnosis, the process of cancer treatment, and end-of-life care. Open-ended questions were used with the freedom to ask unprepared questions, allowing for a conversational style and adaptation to the dialogue in the interview. 25

| Data collection
Interviews were conducted either in person or via telephone by members of the research team who were unknown to participants.
Interviewers received training in qualitative research methods from the Principal Investigator prior to conducting interviews. Interviews lasted approximately 30-40 min and were audio-recorded using a smartphone.

| Data analysis
Interviews were transcribed verbatim and uploaded to computer software NVivo 11. Thematic analysis was conducted on the data, with adherence to the six phases of thematic analysis, as described by Braun and Clarke. 26 This entails familiarisation with the data; generating initial codes; searching for, reviewing, and defining themes; and reporting on the findings. 26 Themes were generated at a semantic level. An inductive approach was taken, whereby shared patterns of meaning were identified in the data. This allowed for exploration of novel research and the collection of rich and meaningful data, thus permitting significant depth of understanding of individuals' attitudes and opinions. 26 D'ALTON ET AL.

| RESULTS
Four themes were generated from the data, namely Fragmentation of Care, Healthcare Providers' (HCPs') Understanding of SMHD, Complex Nature of Presentation, and Specialised Care Needs (see Table S1).  These preconceptions about individuals with SMHD were described as having a significant impact on the care provided to patients. For example, participants reported that cancer treatments are often altered in the instance of SMHD due to concerns that patients' reduced capacity may impact their ability to manage standard treatment or due to the potential risks that treatment may pose to patients' mental health. In addition, patients with SMHD were reportedly less likely to be granted access to clinical trials. Some participants reported needing to 'fight' for their patients to get them equal treatment: 'Very often there will be treatment decisions made if you felt that the risk posed to that patient may outweigh the benefits' (O4).

| DISCUSSION
This study is the first to qualitatively examine the views of healthcare Results suggest that many HCPs have a limited understanding of SMHD, which often has a negative impact on the care provided to this population. For example, participants described feeling illequipped to cope with the mental health needs of patients with SMHD. This study supports previous findings that some HCPs may hold stigmatising attitudes towards individuals with SMHD, including pessimistic views regarding treatment outcomes, and doubts about their ability to adhere to treatment and self-care. 31,32 Many participants suggested that HCPs' limited understanding of SMHD and resulting stigmatising attitudes may be the result of insufficient suitable training concerning SMHD. 32 Our results indicate that stigma needs to be addressed at patient, provider, and structural levels for change to occur, and previous research suggests that positive leadership within organisations can facilitate cultural change in this respect. 33,34 Educational interventions, such as anti-stigma training and increased contact with persons with SMHD who can share their lived experiences of interacting with health services, could potentially enhance HCPs' awareness of unconscious biases towards people with SMHD and improve competency in working with this population. 35,36 Participants' comments in relation to difficulties distinguishing between psychiatric and cancer symptoms corroborate prior findings that diagnostic overshadowing, whereby patients' physical symptoms are incorrectly ascribed to their mental illness, 33 can occur in the case of cancer patients with SMHD. 10 Additionally, participants' reports regarding alterations in treatment and reduced opportunities for participation in clinical trials for patients with SMHD and cancer are consistent with previous findings that HCPs sometimes make decisions contrary to typical care standards due to SMHD-related stigma, 12,37 whereby patients are excluded from clinical trials due to staff's beliefs regarding patients' capacity to make medical decisions and provide consent, and due to difficulty communicating with patients. 10 It is possible that there is, at times, an outdated paternalistic model of care for people with SMHD 38 ; such paternalism may account for participants' reports that cancer patients with SMHD are often excluded from clinical trials. In fact, patients with SMHD could benefit significantly from being included in clinical trials due to the structured nature of care, increased contact with oncology staff, and the potential to facilitate treatment adherence. 10 Moreover, in a recent study, researchers successfully boosted the retention of people with SMHD in a clinical trial by addressing common barriers to recruitment and retention, including access to transportation and conflicting medical appointments. 39 However, data informing optimal treatment for this cohort is still lacking. 40 Continuity and coordination of care for individuals with comorbidities is associated with a variety of challenges for both patients and clinicians. Participants in the present study speculated whether higher mortality rates and delayed diagnoses in individuals with SMHD were influenced by patients' reduced capacity for adequate self-care. Previous research reports that self-stigma and anticipation of stigmatisation by HCPs can deter people with SMHD from seeking healthcare for physical symptoms, 33 which may contribute to findings regarding delayed diagnoses and higher mortality rates in this cohort. 36 Finally, it is possible that the interview schedule contributed to participants' overgeneralised responses regarding people with SMHD.
The term 'SMHD' was used throughout rather than naming the specific diagnoses encompassed by the term. It is possible that this caused the degree of overgeneralisation detected in participant responses. The authors recommend regularly re-orienting participants throughout the interview to the specific diagnoses encompassed by the term SMHD to reduce the likelihood of this drift in focus.

| Clinical implications
Although unintended, it appears some patients with SMHD are not receiving optimum cancer care. The data suggests that barriers and facilitators include patient-, provider-, and system-level factors.
A concerted effort is required to adapt the system of cancer care provision for this patient population to improve the quality-of-care provided to people with SMHD and cancer. Difficulties arise when there are comorbid medical and mental health diagnoses, and where HCPs and systems are separate. The present study suggests the need for a specialised, integrated team to provide care to individuals with SMHD and cancer, as well as targeted interventions to improve HCPs' understanding of the needs of individuals with SMHD, and to address stigma towards people with SMHD in healthcare settings.
See Table S2 for additional suggestions regarding how the core issues identified in the present study could be addressed.

| CONCLUSION
The findings of the present study give insight into the barriers and facilitators to effective cancer care provision for patients with SMHD, by exploring the views of healthcare professionals working with individuals with cancer and co-occurring SMHD in Irish hospitals. Four themes were generated from the data, namely Fragmentation of Care, HCPs' Understanding of SMHD, Complex Nature of Presentation, and Specialised Care Needs. These findings will help to shape future research in the field and contribute to improving the quality-of-care for people with SMHD and cancer.