Intervention Recommendations to Improve Uptake of Breast, Cervical, and Colorectal Cancer Screening among Individuals Living with Serious Mental Illness

Abstract

Purpose:

Few efforts have been made to inform intervention design for increasing the uptake of cancer screening in individuals living with serious mental illness (ILSMI), who have lower cancer screening rates than the general population. This qualitative study explored ILSMI’s and their care team member’s (CTM) recommendations on the design of a breast, colorectal, and cervical cancer screening intervention for ILSMI.

Methods:

Twenty-five ILSMI (mean age: 71.4 years; 60% female) and 15 CTM (mean age: 45.3 years; 80% female) were recruited through purposive sampling. Semi-structured in-depth interviews were used to collect participants’ intervention suggestions. Interviews were recorded, transcribed verbatim, and imported into NVivo. Content analysis and the constant comparison method were used to analyze interview data.

Results:

ILSMI and CTMs provided several salient recommendations. ILSMI should receive disease-specific, logistical, and screening education, and primary care staff should receive education on psychopathology. Mental health providers and patient navigators should be considered as the primary interventionist. The intervention should be delivered where ILSMI receive medical or mental health services, receive community and government services, and/or via various digital media. The intervention should improve the collaboration, communication, and coordination between primary and mental health care. Findings also pointed to the implementation of trauma-informed cancer care and integrated care models comprising mental health care and primary cancer care.

Conclusion:

These findings bring the skills, knowledge, and expertise of ILSM and their care team to intervention design for increasing colorectal, breast, and cervical cancer screening in ILSMI attending an intensive outpatient program.

Intervention Suggestions to Improve Uptake of Breast, Cervical, and Colorectal Cancer Screening among Individuals Living with Serious Mental Illness

Worldwide, individuals living with serious mental illness (ILSMI) are more likely to die from cancer than the general population, despite similar rates of cancer incidence [1]. For example, a global systematic review with meta-analysis of 19 studies conducted in Europe, Australia, North America, and East Asia found that people living with schizophrenia have a risk of cancer mortality 40% higher than the general population while controlling for salient covariates (e.g., geographical location and gender) [2]. According to the Substance Abuse and Mental Health Service Administration and the National Institute of Mental Health, the identifier serious mental illness is assigned to a psychiatric disorder when it significantly impairs functioning in basic daily living skills (e.g., eating); instrumental living skills (e.g., managing money); or in social, family, and vocational/educational contexts [3]. In other words, as diagnosed with the Diagnostic and Statistical Manual of Mental Disorders [4] or with the International Statistical Classification of Diseases and Related Health Problems (‎ICD-10), any mental, behavioral, or emotional disorder (e.g., major depressive disorder, schizophrenia) can be a serious mental illness when it causes significant disability [5]. Due to their mental illness, ILSMI face several barriers to adequate cancer care that indirectly increases their risk of cancer mortality [1, 6-12].

ILSMI have significantly lower rates of cancer screening as compared to the general population [13]. This might explain ILSMI’s higher rates of cancer mortality. Non-adherence to cancer screening may indirectly increase ILSMI’s cancer mortality by increasing their risk of advanced cancer when the likelihood of surviving is already poor [1, 14]. Evidence suggests that ILSMI have lower rates of cancer screening because of several individual, interpersonal, and community factors (poverty, low knowledge of cancer screening, lack of support, and discrimination) [1, 6-12]. In light of their numerous barriers to cancer screening, ILSMI who are at risk of cancer could benefit from interventions that can promote their cancer screening as recommended by the US Preventive Services Task Force [11, 15-17]. A 2022 scoping review showed that patient-, provider-, or health system-focused interventions may be promising to increase access to multiple types of physical health care services in ILSMI [18].

Despite the fact that various types of interventions could improve access to physical health care among ILSMI, a 2016 Cochrane review found no studies evaluating patient-, caregiver-, or provider-focused interventions for improving adherence to recommended cancer screening among ILSMI [19]. Since then, only three studies have been published and informed on barrier-focused interventions: patient navigation and case management. A two-arm randomized controlled trial found that compared to treatment as usual (n = 125), patient navigation (n = 126) improves the uptake of colorectal cancer screening among adults living with mental illness and/or substance use disorder in Boston, Massachusetts [20]. Although no significant changes in knowledge, attitudes, and intention to obtain screening were observed, a one-arm pilot trial found that decision counseling supplemented with patient navigation (n = 21) reduced decision conflict to obtain mammography and was acceptable and feasible in women living with severe mental illness in Philadelphia, Pennsylvania [21]. A two-arm, randomized controlled trial found that compared to a treatment-as-usual group (n = 85), case management (n = 85) improves the uptake of colorectal cancer screening among adults living with schizophrenia or schizoaffective disorder in Okayama, Japan [22, 23]. In a follow-up study with the same data, evidence supported the acceptability of this case management intervention [24]. There are also no known national initiatives in the United States focused on increasing access to cancer screening among ILSMI. The scarcity of this literature highlights a need for studies to inform the development of interventions for increasing cancer screening among ILSMI.

Multiple approaches to intervention development, including Intervention Mapping, recommend eliciting feedback from the intended audience (i.e., ILSMI) and their care team members (i.e., CTM, people who provide health care and support services to ILSMI) because they offer a greater breadth of relevant skills, knowledge, and expertise to better recognize the needs of the target population [25]. To date, only one qualitative study has interviewed both women living with severe mental illness and mental health providers on strategies to promote breast and cervical cancer screening [10]. Participants recommended enhancing coordination of care by using electronic medical records, improving communication between primary care and mental health care providers, and using case managers to help ILSMI navigate the healthcare system. Qualitative studies can expand on these findings by including ILSMI of any gender and focusing on other types of cancer screening (e.g., colorectal).

Therefore, grounded in Intervention Mapping [25], the present qualitative study elicited male and female ILSMIs’ and CTMs’ recommendations for the development of an intervention to improve breast, cervical, and colorectal cancer screening. Participants provided feedback on the ideal person to deliver the intervention, the ideal location for the intervention to take place, intervention content, and approaches to maximize intervention effectiveness. Study findings can inform the design of high-quality interventions for improving uptake of breast, cervical, and colorectal cancer screening in ILSMI.

Methods

Overview

The present study used a cross-sectional, qualitative design and follows COREQ (Consolidated criteria for Reporting Qualitative research) guidelines for the reporting of qualitative studies [26, 27] (see Appendix). Data were collected in a larger project that used Intervention Mapping [25] to design a cancer screening promotion intervention for ILSMI. Aligned with Intervention Mapping’s ecological approach, the project used the Social-Ecological Model [28, 29] and collaborated with ILSMI and CTMs to assess the needs and assets of ILSMI for obtaining breast, cervical, and colorectal cancer screening. ILSMI and CTMs provided their perspectives on ILSMI’s barriers and facilitators to cancer screening as well as their recommendations on the design of the intervention. The present study reports the qualitative data on the intervention recommendations. All participants provided written informed consent before taking part in the study, also consenting to their data being published. The study was approved by a non-profit psychiatric hospital’s Institutional Review Board.

Participants

Twenty-five ILSMI and 15 CTMs were recruited from a non-profit psychiatric hospital with inpatient and outpatient treatment in San Diego County, California. At the psychiatric hospital, ILSMI were attending either an adult intensive outpatient program for patients with severe mental illness or a senior intensive outpatient program for patients at least 60 years of age living with a mood disorder. Both programs treat patients who need intensive structured treatment without inpatient hospitalization. ILSMI participants were included in the study if they were: 1) diagnosed with a severe mental illness; 2) able to speak English; 3) able to provide informed consent; and 4) 50 years of age or older in consideration of the U.S. Preventive Services Task Force’s age guidelines for recommended breast, cervical, and colorectal cancer screening at the time [17, 30, 31]. CTMs were defined as “people who provide health care and support services to ILSMI at the adult intensive outpatient program or senior intensive outpatient program.” To be included, CTMs were required to: 1) be 18 years of age or older; 2) be able to speak English, and 3) have experience with working with ILSMI for at least 1 year.

Procedures

Purposive sampling [32] was used to recruit ILSMI and CTMs that met the above inclusion criteria. That is, the study aimed to specifically recruit two groups of participants: 1) patients (i.e., ILSMI) who were attending the two intensive outpatient programs who had a severe mental illness and, based on the cancer screening guidelines at the time [17, 30, 31], could have sought screening for cervical, colorectal, and/or breast cancer; and 2) employees (i.e., CTMs) of the psychiatric hospital who had at least 1 year of experience working with ILSMI. These two groups of individuals were selected based on their ability to provide information about barriers and facilitators to cancer screening, along with potential intervention suggestions for a cancer screening intervention.

ILSMI and CTMs were interviewed separately and individually according to their availability. A psychiatric hospital’s employee who was also a study team member identified potential ILSMI and CTMs for the study. For potential ILSMI participants, the psychiatric hospital employee brought potentially interested ILSMI participants to meet with a graduate research coordinator in a private room at the psychiatric hospital where the intensive outpatient programs were being conducted. If the ILSMI expressed interest in participating, the graduate research coordinator provided additional study information, confirmed study eligibility, and obtained informed consent. After informed consent, the graduate research coordinator began the individual semi-structured, in-depth interview to assess eligible ILSMI’s perspectives on barriers and facilitators to cancer screening in ILSMI as well as their recommendations on the development of a cancer screening intervention. The graduate research coordinator met with each ILSMI participant alone in the private room.

As for potential CTM participants, they were first contacted by the psychiatric hospital’s employee who was also a study team member via email, telephone, and/or in person inquire about their interest in the study. An in-person meeting was scheduled with a graduate research coordinator for CTMs who agreed to participate. The in-person meeting with each CTM took place in a private room in the psychiatric hospital where the graduate research coordinator provided additional study information, confirmed study eligibility, and obtained informed consent. After informed consent, the graduate research coordinator began the individual semi-structured, in-depth interview to assess eligible CTMs’ perspectives on barriers and facilitators to cancer screening in ILSMI as well as their recommendations on the development of a cancer screening intervention.

The graduate research coordinator met with each CTM participant alone in the private room. Interviews were conducted by two graduate research coordinators (JRG, EA) who identified as female, had graduate education in psychology, had previous experience with qualitative data collection, were trained in all study procedures, and were not related to the study participants. Repeat interviews were not conducted. Each interview was audio recorded.

Three members (KJW, JRG, EA) of the study team developed the interview guides based on the five levels of the Social-Ecological Model (i.e., individual, interpersonal, institutional, community, and public policy) [28, 29], while incorporating items to assess for intervention suggestions from the members of the community per Intervention Mapping [25]. Three members of the study team reviewed the interview guide; the interview guide was not piloted. ILSMI and CTMs also completed a standardized, self-report questionnaire to collect demographic data (e.g., age and gender). ILSMI also provided information about family history of cancer via self-report. At study conclusion, all participants received a $25 gift card.

Data Analysis

During the in-depth interviews, ILSMI and CTMs provided their perspectives on ILSMI’s barriers and facilitators to cancer screening, as well as their recommendations on the design of a cancer screening intervention. Twenty-five ILSMI interviews (mean: 31.7 minutes, standard deviation [SD]: 9.6 minutes) and 15 CTM interviews (mean: 38.4 minutes, SD: 9.8 minutes) were completed in English between May 15, 2017 and May 2, 2018. Thematic saturation was achieved as indicated when no new information about a priori themes was provided [32]. Interviews were transcribed verbatim but were not provided to participants for comments or corrections. Through direct content analysis [33], two authors (RACA, CGA) developed the preliminary codebook with a priori themes based on the five levels of the Social-Ecological Model [28, 29] and intervention suggestions (i.e., intervention content, intervention place, preference of interventionist, and intervention approaches). The present study reports only the data obtained during interviews regarding study participants’ recommendations on the design of a cancer screening intervention for ILSMI. Two team members (RACA, CGA) independently reviewed each transcript and assigned sections of text to specific codes (i.e., intervention content, preference for the interventionist, intervention location, and intervention approaches). These two team members had in-person meetings to assess for discrepancies in coding. They resolved coding discrepancies (e.g., differently coding interview text that offered a suggestion as intervention content versus intervention approach) thorough discussion about coding until consensus was reached. When it was difficult to reach consensus, another team member (JRG) provided her input to help the two team members reach a decision about how to best code the text. The data were coded using NVivo. Three authors (AB, DK, RACA) created summaries for each subtheme. We used SPSS to conduct descriptive analysis of demographic data (i.e., frequencies, measures of central tendency, and variation).

Results

Participant Characteristics

ILSMI participants had a mean age of 71.4 years (SD: 6.8), 60% were female, 84% identified as non-Hispanic White, 68% had less than or equal to some college education, 20% were married, 16% had no children, 16% were living with family, and 32% had an annual income below $9,999. Importantly, 24% reported that their mother had cancer, and 20% reported that their father had cancer. CTMs had a mean age of 45.3 years (SD: 11.2), 80% were female, 80% identified as non-Hispanic White, 86.6% had a graduate-level education, and 87.7% identified as a mental health provider (e.g., social worker). Tables 1 and 2 present demographic characteristics for ILSMI and CTMs.

Table 1.

Demographic characteristics of 25 individuals living with serious mental illness (ILSMI).

Characteristic	ILSMI n (%)
Age (Mean, SD)	71.4 (6.8)
Gender
Female	15 (60)
Male	10 (40)
Race
White	21 (84)
Black/African American	3 (12)
Other	1 (4)
Ethnicity
Not Hispanic or Latino	23 (92)
Hispanic or Latino	1 (4)
Missing	1 (4)
Education
Some high school	2 (8)
High school graduate or GED	5 (20)
Partial college or specialized training	10 (40)
College or university graduate	5 (20)
Graduate or professional training	3 (12)
Country of Birth
United States	22 (88)
Canada	1 (4)
India	1 (4)
Cyprus	1 (4)
Ever Employed
Yes	24 (96)
No	1 (4)
Marital Status
Divorced or separated	13 (52)
Married	5 (20)
Widowed	5 (20)
Single/never married	2 (8)
Number of Children and/or Stepchildren
None	4 (16)
One	7 (28)
Two	7 (28)
Three	5 (20)
Four	2 (8)
Current Residence
Own apartment or house	16 (64)
Living with family	4 (16)
Living in a retirement Community	1 (4)
Other	4 (16)
Annual Household Income
$1 to $9,999	8 (32)
$10,000 to $19,999	5 (20)
$20,000 to $29,000	4 (16)
$30,000 to $39,000	3 (12)
$40,000 to $49,000	3 (12)
$50,000 or above	2 (8)
Primary Language
English	25 (100)
Mother Diagnosed with Cancer
Yes	6 (24)
No	19 (76)
Father Diagnosed with Cancer
Yes	5 (20)
No	17 (68)
Missing	3 (12)

Table 2.

Demographic characteristics of 15 care team members (CTMs).

Characteristic	CTMs n (%)
Age (Mean, SD)	45.3 (11.2)
Gender
Female	12 (80)
Male	3 (20)
Race
White	12 (80)
Black/African American	1 (6.7)
Multiracial	1 (6.7)
Missing	1 (6.7)
Ethnicity
Not Hispanic or Latino	14 (93.3)
Hispanic or Latino	1 (6.7)
Education
Partial college or specialized training	1 (6.7)
College or university graduate	1 (6.7)
Graduate or professional training	13 (86.7)
Occupation
Therapist (Social Worker or Marriage and Family Therapist)	13 (86.7)
Registered Nurse	1 (6.7)
Utilization Review Case Manager	1 (6.7)
Language other than English
None	11 (73.3)
Spanish	2 (13.3)
American Sign Language	1 (6.7)
Other	1 (6.7)

ILSMIs and CTMs provided recommendations on the design of a colorectal, breast, and cervical cancer screening intervention for ILSMI. These recommendations are presented below based on the following four themes: preferences for interventionist, intervention location, intervention content, and intervention approaches. Table 3 summarizes each recommendation, its description, and supporting participant quotes.

Table 3.

Individuals living with serious mental illness’ (ILSMI) and care team members’ (CTMs) recommendations.

Intervention recommendations	Description	Supporting quote
Preference for interventionist
Interventionist	The primary preference for an interventionist is a mental health provider. However, the interventionist could be any individual whom the ISLMI trust and can encourage care, such nurses, support group facilitators, case managers, peer support specialists, health coaches, family and/or friends, patient navigators, “medical providers”, and physicians’ assistants.	“Well, I’m sure that the therapist…can guide a person.” (ILSMI) “If there was a possibility of actually having people like case managers, or like a health coach who comes in to guide them, take them to their appointment, but then maybe follow up.” (CTM) “A lot of people are very suspicious, depending on in their disease. If they’re schizophrenic, then they’re not trusting too well. And so, probably a caregiver, someone in the family…That will help them do it.” (ILSMI)
Intervention location
Medical or mental health sites	The intervention should be implemented at sites with medical or mental health services, such as at medical offices, clubhouses, crisis centers, Alcoholics Anonymous, and adult intensive outpatient programs	“When you go into a doctor’s office they have little pamphlets there… so, written, written pamphlets and… things like that.” (ILSMI) “Now at the crisis center, type of thing, I know they do 2 groups a day…” (CTM)
Community and governmental sites	The intervention should be implemented at sites with community and government services, such as at shelters, social service offices, government assistance offices, insurance company offices, and food banks	“I guess places like social services, offices. Shelters, maybe?” (ILSMI) “You know certain doctors’ offices, welfare offices, social service offices, through their social workers…you could ask…. Just notices in places where people are, likely to be. Especially women.” (ILSMI)
Communication channels	The intervention could be delivered via many communication channels (e.g., TV commercials, billboards) to ILSMI and individuals within the community.	“Like TV, you know, the commercials for cancer, there’s a lot going on with that. Commercials get to the heart and also your doctors. Let them know you know that they you need this.” (ILSMI) “So, I think it would have to be something like PBS [News channel] or one of those…Something like that could be good, or even any sort of handouts.” (CTM) “If I was somebody…that’s afraid of going to the doctor or having interviews with somebody or something. Just getting something through mail or having a website, you know, to go to, you know, about these kinds of things.” (ILSMI)
Intervention content
Cancer education for ILSMI	ILSMI should be informed on what is cancer, how cancer can be asymptomatic, how genetic predisposition increases the risk for certain types of cancer, and how cancer can be prevented.	“Yes! Education for everything…well, again normalizing and educating you know that many people have lumps, that it doesn’t mean anything, it, yeah. It’s not automatically cancer or you have to have surgery, or you’re stage 4 or anything like that.” (CTM) “Maybe a relative in the family has had cancer and they’re concerned about their genes being, and they should make sure you’re not concentrating on their mental health but concentrating on other body parts.” (ILSMI)
Cancer screening education for ILSMI	ILSMI should be informed on the benefits and risks (e.g., physical harm) of cancer screening and on the different types of cancer screening available.	“Well just tell them…you have certain screenings and things available so they can have good long lives, healthy long lives.” (ILSMI) “Their therapist or a therapist in the program to really like weigh the pros and cons of getting screenings and why it’s so important to do it.” (CTM) “I think they would need to know the potential of an invasive procedure if you could get injured…people do get their, part of their colon can get nicked when they go in for a colonoscopy.” (CTM)
Logistical education for ILSMI	ILSMI should be informed on where to obtain cancer screening, how to initiate the screening process, how to get screening covered by insurance, and the importance of attending doctor appointments.	“Particularly telling them where to go and how to get involved in having these tests performed…and you need someone with serious mental health problems, you may need someone who could be like a care caregiver or teach.” (ILSMI) “I think just the education of what is going to happen and who is going to be there, who is going to be performing the screening, just information at a time, what the follow up is going to be and what does it mean and just kind of normalizing that. A lot of us don’t like these procedures.” (CTM)
Mental illness education for primary care staff	Primary care staff should be informed on how to recognize psychopathology symptoms, how certain psychopathology symptoms can impact cancer care, and how to be sensitive to the unique needs of ISLMI.	“That medical doctors don’t know a lot about psychiatric treatment, and… medications, and so I don’t know how much they talk to one another with regards to the subject matter, and so that’s what I would venture to say that it would be very helpful for there to be more education on all ends of it.” (CTM) “The thing to remember with schizophrenia is that they can easily get confused or overwhelmed so it’s a delicate balance. It’s almost…I don’t know if it’s a little bit like what you might get when you get a prescription, and there’s the basic…the basic way of taking it or doing it, and then you turn it over, and there’s all the chemical explanation. Which you need to know…” (CTM)
Intervention approaches
Activities of interventionist	Take patients to appointments Provide education Provide emotional and peer support Follow-up with care Encourage motivation, self-care, and comfort Help find and get to medical services and resources Find transportation	“Make sure that they have gotten a followed up on their referrals…Make some phone calls.” (ILSMI) “Well, you can make an appointment for them. If they want help, you can help them get an appointment. You can provide transportation for them.” (ILSMI) “If there was a possibility of actually having people like case managers, or like a health coach who comes in to guide them, take them to their appointment, but then maybe follow up.” (CTM)
Implement integrated care for ILSMI	Implement integrated care models to improve the collaboration, coordination, and communication between the mental health care and primary care systems.	“I think we need better collaboration as mental health providers with medical providers, especially for our patients.” (CTM) “So, if we would be able to coordinate to make it all in one center, I think it would be a lot more practical.” (CTM) “I think a lot more partnership between health and mental health and not seeing them as separate and understanding that you know my body connections that I have a mental health issue I am probably not going to follow up with physical health services.” (CTM)
Implement clinical strategies	Clinical strategies (e.g., motivational interviewing and group therapy) should be used to reduce negative attitudes and fear toward cancer screening, increase motivation to self-care, improve consolidation of health information, and reduce psychopathology symptoms before receiving cancer screening	“I can say is if you came in as a group, come in and talk to a group…And…stress the importance of it that’s the only thing I can really think of.” (ILSMI) “Motivational interviewing could maybe be used to get them to be comfortable with the screening…. I think that this could be easily sort of looped into our process and to really encourage them that it’s a good thing.” (CTM) “But probably the biggest thing is if they get some kind of counseling or supportive…feedback either from a nurse or a therapist about the importance of it…or family members.” (CTM)
Reduce stigma around mental illness and cancer care	Efforts should be made to reduce mental illness and cancer stigma among ILSMI, the community, and primary care providers.	“I know that there are a lot of stigmas with mental illness. That medical doctors don’t know a lot about psychiatric treatment. I would say that it would be very helpful if there is more education.” (CTM) “Decrease the stigma first of all and keep everybody in the loop. Like so, I don’t know how familiar you are with all the screenings everything, regulations for nursing and when people should go get things done changes so much” (CTMs)
Relieve economic burden through insurance, incentives, and/or free clinics.	Efforts should be made help ILSMI find insurance that covers cancer care; provide incentives to reduce the burden of travel and time; and provide free clinics that provide free cancer care.	“giving donuts…Cookies or something like that when, they do that for you know, giving blood.” (ILSMI) “Seriously, I mean I’ve seen them motivated by money because they’re on very fixed incomes.” (CTM) “The other thing is other incentives. Could be things like getting, buying them a bus pass…” (CTM)

Preference for Interventionist

Several ILSMI and CTMs agreed that mental health providers (e.g., psychiatrists and counselors) could be the interventionist, given that they possess the clinical skills to help ILSMI overcome potential discomfort with cancer screening. One CTM mentioned, “A mental health professional can also be involved to help them overcome and manage some of those symptoms prior to the screening.” Other possible interventionists included nurses, case managers, peer support specialists, health coaches, family and/or friends, patient navigators, “medical providers,” physicians assistants, or generally someone whom an ILSMI trusts. One ILSMI mentioned, “It’s always good to have encouragement from friends and family.”

Intervention Location

The majority of CTMs and ILSMI agreed that the intervention would be best delivered at sites with medical or mental health services (i.e., medical offices, clubhouses, crisis centers; Alcoholics Anonymous; adult intensive outpatient program or a senior intensive outpatient program), sites with community and government services (i.e., shelters, social services offices, welfare offices, insurance company offices, and food banks), and/or be delivered via different communication channels (i.e., television, radio, phones, websites, newspapers, billboards, or mail). One CTM and one ILSMI emphasized that the intervention should take place in sites that are highly frequented by ILSMI (e.g., food banks, homeless shelters). The CTM mentioned, “It is going to the food banks, medical offices, clubhouses, homeless shelters, some poor village and the downtown senior residency hotels. They are not going to come to you,” and the ILSMI mentioned, “just notices in places where people are likely to be, especially women.”

Intervention Content

Several ILSMI and CTMs agreed that education would be an important component of the cancer screening intervention. They stated that ILSMI should be provided with disease-specific education on what cancer is, how cancer can be asymptomatic, how genetic predisposition increases the risk for certain types of cancer, and how cancer can be prevented. Furthermore, ILSMI should receive screening-specific education on the benefits and risks (e.g., physical harm) of cancer screening as well as on the different types of cancer screening available. One CTM stated,

“I think maybe their primary care or somebody really discussing with them the risks and the benefits of getting those screenings done. And I guess talking about how they could start with the more non-invasive one first, and then see. And just talking about the importance of getting that screening because I think, often times, they sort of brush it off like, I’m not having any symptoms…educating them on the fact that there are treatments available that were never available before.”

CTMs and ILSMI also noted that ILSMI should receive logistical information on where to obtain cancer screening, how to initiate the screening process, how to get screening covered by insurance, and the importance of attending medical appointments.

Also, a few CTMs indicated that primary care staff (e.g., nurses) should receive education on psychopathology and best approaches to providing cancer screening to ILSMI. They stated that certain symptoms of mental illness could complicate screening procedures. One CTM mentioned,

“Some type of coaching of sorts where providers had more understanding of sexual trauma and what that looks like when someone is having these procedures so I think that would take some medical staff education as well as patient education…I think screening for sexual trauma would really help kind of understand the conversations that need to happen beforehand, for level of comfort, or even just material that can be provided to help them understand that they may have increased symptoms arise during this and this is what they can do after.”

Intervention Approaches

A few CTMs and ILSMI stated that clinical strategies (e.g., motivational interviewing and group therapy) should be implemented to change ILSMI’s negative attitudes and fear toward cancer screening, increase their motivation for self-care, help them consolidate health information and recommendations, and ameliorate their mental health symptoms before cancer screening. One CTM stated, “the therapist in the program should really help them understand and weigh the pros and cons of getting screenings… Motivational interviewing could maybe be used to get them to be comfortable with the screening” and an ILSMI mentioned when suggesting group therapy, “the idea here is as I call group therapy… Will help you come together to heal some way. But you’re not alone…You’re not battling this by yourself.” In the same vein, many CTMs believed that efforts should be made to reduce the stigma around mental illness and cancer care (e.g., colorectal cancer screening), especially to help get family involved in ILMSI’ cancer care and to help ILSMI’s care team provide better trauma-informed cancer care. When discussing how to involve family members in ILSMI’s cancer care, one CTM stated,

“If you know that they have involved family, and again this goes back to the stigma of mental health illness, a lot of people don’t wanna talk about it, so their kind of like the black sheep of the family sometimes. But if you know if they have a supportive family member, get their family member involved.”

To improve quality of cancer care for ILSMI, several CTMs alluded to implementation of integrated care by recommending improvements in communication, collaboration, and coordination between primary care and mental health care systems. One CTM stated, “I think we need better collaboration as mental health providers with medical providers, especially for our patients.” Several CTMs and some ILSMI also underscored that cancer screening interventions should provide ILSMI with insurance, incentives, and/or free clinics to relieve the economic burden of getting cancer screening. One ILSMI mentioned, “give them money or insurance.” Lastly, CTMs and ILSMI agreed on the deployment of interventionists to take patients to appointments, provide emotional and peer support, provide education, encourage self-care, provide transportation, follow-up on care, and navigate them through the healthcare system.

Discussion

The present qualitative study explored ILSMI’s and CTMs’ recommendations on the design of an intervention to increase uptake of cervical, breast, and colorectal cancer screening in ILSMI. Intervention Mapping recommends using feedback from the intended audience (i.e., ILSMI) and CTMs to inform intervention design, as they better recognize the needs of the target population and offer a greater breadth of relevant skills, knowledge, and expertise [25]. ILSMIs’ and CTMs’ recommendations informed on the ideal person to deliver a cancer screening intervention; the ideal place where the cancer screening intervention should take place; content that should be included in the cancer screening intervention; and strategies that should be taken to make the cancer screening intervention effective.

Similar to the conclusions of the only published study that has previously probed the perspective of ILSMI and CTMs in this regard [10], this study recommends that interventionists should be deployed to help ILSMI navigate the complex healthcare system by performing tasks related to health care support (e.g., provide emotional support), care coordination (e.g., provide transportation to appointments), and basic navigation (e.g., check-ins). Our findings revealed that the primary preference for an interventionist is a mental health provider (e.g., psychiatrist, counselors) because they possess clinical skills that could help facilitate screening in ILSMI. However, interventions should also consider patient navigators, case managers, and social workers as other viable options. Not only were they also recommended as possible interventionists in the present study, but these health workers are often already engaged in tasks to help patients navigate the healthcare system [34-36]. Plus, two studies revealed that patient navigation [20] and case management [23] may help improve the uptake of cancer screening in ILSMI. In general, the interventionist was described as someone whom an ILSMI trusts, which can also include friends, family members, and/or others.

Consistent with the previous qualitative study [10], implementation of integrated care was recommended to improve the collaboration, communication, and coordination between the primary care and mental health care systems. In fact, it was recommended that a cancer screening intervention for ILSMI should take place in sites where they receive mental health services (e.g., intensive treatment programs), receive community and government services (e.g., shelters), and receive primary care. Based on prior research on behavioral health integration for ILSMI, Gerrity (2014) stated that integrated care models can be conceptualized along a continuum of six levels of collaboration and fragmentation, ranging from separate care systems with little communication to full integration until the health care systems are perceived as a single system [37]. However, there are several barriers to developing integrated care models, such as financial challenges, resistance to change, and privacy laws. Prior work [37-39] has described state-based and project-based strategies to help overcome these obstacles, for example, using standardized, multi-provider consent forms to facilitate the between-system exchange of information and seeking available state, federal, and foundation grants (e.g., those offered by the Substance Abuse and Mental Health Services Administration [39]). While there are several options to facilitate integrated care models, it is still critical that federal policymakers find better ways of supporting integrative care for ILSMI.

Study results recommend that interventions should provide medical staff with education on psychopathology. In a different qualitative study on barriers to cancer in ILSMI, healthcare staff also underscore the need for medical staff to have mental health expertise when delivering cancer care to ILSMI [40]. This recommendation could be one way to address medical staff’s stigmatizing attitudes towards mental illness, a barrier to cancer screening among ILSMI [12]. In the same vein, it was broadly recommended that efforts should be made to specifically reduce stigma around mental illness and cancer care, which are also known barriers to cancer screening in ILSMI [1, 12]. It was also recommended that the intervention should incorporate clinical strategies (e.g., motivational interviewing and group therapy) to ameliorate ILSMI’s psychopathology symptoms before screening and to improve their consolidation of health information and cancer screening recommendations. Previous evidence has revealed that uncontrolled psychopathology symptoms hinder uptake and adherence to cancer care among ILSMI by impairing their judgement or organizational skills and, subsequently, compromising their ability to adhere to cancer screening appointments and communicate with their providers [12]. These recommendations, the use of therapists as the interventionist, and deployment of integrated care models allude to the implementation of trauma-informed cancer screening in accordance with the principles and goal of trauma-informed care [41].

The Substance Abuse and Mental Health Services Administration has published a manual with the definition of trauma-informed care and a framework for becoming a trauma-informed organization, system, or service sector [41]. Cancer screening interventions should understand that trauma-informed care is defined as care that:

realizes the widespread impact of trauma and understands potential paths for recovery; recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; and responds by fully integrating knowledge about trauma into policies, procedures, and practices, and seeks to actively resist re-traumatization.

(p. 9)

Cancer screening interventions should attempt to align different organizational levels with the following principles described in the Substance Abuse and Mental Health Services Administration’s manual: 1) safety, 2) trustworthiness and transparency, 3) peer support, 4) collaboration and mutuality, 5) empowerment, voice, and choice, and 6) cultural, historical, and gender issues. The organizational levels are described in the Substance Abuse and Mental Health Services Administration’s manual and include: 1) governance and leadership, 2) policy, 3) physical, 4) engagement and involvement, 5) cross sector collaboration, 6) screening, assessment, treatment services, 7) training and workforce development, 8) progress monitoring and quality assurance, 9) financing, and 10) evaluation. A 2022 scoping review found that trauma-informed care is growing in oncology since the 2014 publication of the Substance Abuse and Mental Health Services Administration’s manual, but substantial efforts are still required for the oncology field to fully integrate trauma-informed cancer care [42]. Integrating the framework of trauma-informed care in cancer screening interventions is a crucial step towards promoting the receipt of cancer screening in ILSMI, give that it may help target unique psychopathology-related barriers in this population (e.g., trauma symptoms, mental health stigma) [1, 12].

There are other novel recommendations. The intervention should contain an education module that provides ILSMI with disease-specific, screening-specific, and logistical information. This recommendation could help address ILSMI’s low knowledge of cancer and cancer screening [12]. Participants stated that a cancer screening intervention for ILSMI could also be delivered via different communication channels, such through television, radio, phones, websites, newspapers, billboards, or mail. Results reported in a systematic review [43] support the acceptability and feasibility of informational technology (e.g., smartphone) interventions for ILSMI. For instance, one recent study reported that 75% of ILSMI expressed willingness to participate in digital interventions for health, mental health, and stress [44].

The purpose of the study was to gather information from ILSMI and CTM regarding their suggestions for intervention approaches. We did not attempt to evaluate these suggestions for feasibility. Some of the recommendations may not be feasible in all settings. Although some may not be currently feasible, various stakeholders, including policy makers, can still use them to inform interventions (including legislation) that support equitable cancer care for ILSMI and that in the future, might turn unfeasible recommendations into feasible recommendations. For example, after recognizing the efficacy of patient navigation in facilitating cancer screening, various states have passed Medicaid waivers to fund/reimburse for services performed by navigators and/or community health workers [45]. While it is true that some recommendations may not be currently feasible in all settings, it is also true that ILSMI and CTM still provided other recommendations that are currently feasible, such as educating primary care providers about the impact of cancer screening on psychopathology symptoms. Despite limitations in the study, the present recommendations represent the perspectives of ILSMI receiving care in an intensive outpatient program and of CTM on how to help ILSMI obtain cancer screening.

The present qualitative study had limitations. The sample of ILSMI was unique in that while most participants had low incomes, most also were predominantly non-Hispanic White, their mean age was 71.8 (SD = 6.8), all had health insurance, and all participants were already receiving psychiatric care at an intensive outpatient program in a psychiatric hospital. While, on average, most participants were in the age range for at least one of the U.S. Preventive Services Task Force cancer screening guidelines [17, 30, 31], it is possible that some participants may have been older than recommended to receive the cancer screening for which they were interviewed, especially for women interviewed about cervical cancer screening. Nevertheless, it is likely that participants who provided information regarding suggestions for cancer screening interventions for cancers where their age exceeded the screening recommendation would likely be able to provide valuable information based on their experiences in the recent past. Homelessness and type of mental illness were not assessed. The findings may not represent the perspective of ethnically and racially diverse groups of ILSMI, homeless individuals living with severe mental illness, ILSMI subgroups with certain disorders or who are younger, and of ILSMI who have not been connected to care and do not have insurance. These subgroups of ILSMI may require different approaches for increasing adherence to cancer screening recommendations. Study findings may not represent the perspective of primary care staff, given that 86.7% of CTM participants were social workers or marriage and family therapists. To further expand on the present findings, future studies should address these limitations and obtain the perspectives of primary care staff (e.g., nurses, physicians) and of other diverse groups of ILSMI (e.g., Mexican Americans living with a severe mental illness).

In sum, as recommended by Intervention Mapping [25], the present article provides ILSMIs’ and CTMs’ recommendations for the design of future interventions to promote cervical, colorectal, and breast cancer screening in ILSMI. Some of these recommendations suggest the use of patient-, provider-, community-, and health system-focused interventions to increase cancer screening in ILSMI; evidence already supports these types of interventions as effective at increasing access to health care in ILSMI [18]. Further, important recommendations included the use of case managers, or patient navigators as the interventionist; implementation of integrated care models comprising mental health care and primary care; and providing trauma-informed cancer care for ILSMI. The present set of recommendations from ILSMIs and CTMs can help develop an intervention to promote cancer screening among ILSMI attending intensive outpatient mental health programs.

Data availability

The dataset analyzed during the current study are not publicly available because a) the Institutional Review Board was not informed that the data would be shared, b) participants were not informed that their data would be shared, and c) the research team is actively working on additional manuscripts from these data. The corresponding author can answer further questions about data availability.