Doctoral Project Components - Rutgers University, 2018
Untreated mental illness creates a burden on the healthcare system that expands beyond medical needs. Lost productivity, legal concerns, and the death toll from untreated mental illness all add to the urgency to remove barriers to access to care. Barriers, however, are not simply structural, such as lack of access to care, but are also attitudinal, such as self-stigma and societal stigma. It goes without saying that barriers cannot be removed until they are first identified. As such, the researcher will seek to identify the barriers to access to and retention in care within the primary care setting in North Cape May, NJ.
I predict that several attitudinal and structural barriers will be identified within this population. Specific attitudinal barriers I anticipate discovering include stigma/self-stigma and self-reliance. Structural barriers I anticipate identifying include lack of insurance, lack of financial resources, transportation issues, and difficulty obtaining an appointment.
About Behavioral Health Barriers
In 2003, the World Health Organization generated a report entitled “Investing in Mental Health”**. According this report, there are still significant gaps between need for behavioral health services and available community treatment options. The treatment gap (percentage of individuals who health services but do not receive these services) in behavioral health is anywhere from 44% - 70% and is the result of several different factors. The WHO cites poverty as one of the major contributing factors to the treatment gap**. In addition, lack of public health programs, lack of funding for behavioral health services, stigma, discrimination, and lack of policy geared toward behavioral health care services contribute to the lack of access to treatment for those who need it**.
Health care practitioners in Cape May County, New Jersey are well aware of some of the barriers to initiation and retention in behavioral health care services however, there have been no studies conducted to date that support their theories. The primary care provider with whom I am working has noted several barriers to referral for behavioral health services. Additionally, he has provided me with the feedback he has received from his patients regarding their experience with barriers.
About My Design and Methods
The project for which this protocol is being written is a mixed methodology study to identify the barriers and facilitators that patients in this primary care practice setting face when obtaining behavioral health services. I completed a retrospective chart review in addition to utilizing a survey and qualitative data. I identified correlations between reported barriers and sociodemographic characteristics and used the study results to formulate an access improvement plan for the AtlantiCare organization.
I accomplished this project in 3 phases. The first phase was a retrospective chart review conducted at the AtlantiCare Primary Care Plus practice in North Cape May, NJ. The purpose of this chart review was to identify patients within the practice that have been identified with a behavioral health diagnosis in the previous 12 months. This was completed with the assistance of the AtlantiCare Information Technology (AIT) department.
In phase 2, I separated the patients identified through the chart review into 2 lists: those referred to behavioral health services outside of the primary care practice and those who have not been referred. I contacted by telephone each of the patients who were referred to behavioral health services from the primary care practice to identify barriers and facilitators to engaging in behavioral health services. I utilized the BACE-3* tool and asked one open-ended question (“Can you think of anything that made the process of connecting with a provider easier?”) of each of the subjects to help identify facilitators to obtaining services.
During this phase, I also interviewed the provider and a social worker in the practice to identify their perception of barriers to referring patients to behavioral health services in the Cape May County area. This data was used to enrich my understanding of the providers' experience of referring patients. Additionally, it served as a comparison for me to help identify the subjects’ experience versus the provider’s experience. I utilized the information obtained from the use of the BACE-3* to conduct statistical analysis. The analysis identified correlations between sociodemographic status and barriers in this particular population.
In phase 3, I took the data obtained through statistical analysis and identified the most common barriers in this population. I then reviewed literature to identify evidence-based interventions that address these barriers and generated an access improvement plan for the AtlantiCare healthcare organization. The purpose of this plan was to assist the AtlantiCare organization in removing barriers to behavioral health services in this population. With improved access to behavioral health services, I anticipate improvement in outcomes over the long term (which will not be studied as part of this project).
Total study participants - 27 (25 female, 2 male)
Age - 12 participants under age 55; 15 participants over age 55
Marital status - 13 married; 14 unmarried
Education - 7 with a high school diploma or equivalent or less; 22 with some college or a college degree
Employment - 13 were currently employed; 14 were not currently working
Statistical analysis reveals that there were several statistically significant factors identified through this research. Unmarried persons and older adults were more likely to perceive problems with transportation or travelling to appointments as a barrier. Men are more likely than women to identify a preference for alternative forms of care and not wanting a behavioral health problem in their medical record as barriers. Younger individuals who participated in the study also identified not wanting a behavioral health problem in their medical record as a barrier in addition to difficulty taking time off from work. The analysis also revealed that persons with a lower level of education were more like than those with a Bachelor or Graduate degree to identify a fear of being put in the hospital against their will as a barrier to engaging in behavioral health services.
Research participants cited many barriers not addressed by the BACE-3. The most prevalent barriers identified (outside of the BACE-3 questions) were the quality of behavioral health care in this community closely followed by the distance participants needed to drive to obtain what they considered “quality” services. As a result, many participants chose not to engage in behavioral health services outside of the primary care provider’s office.
Many study participants mentioned to the researcher that they have been dissatisfied with the quality of care received from the main behavioral health provider in the CMC area. In addition to long wait times, study participants reported being displeased with how they were treated by providers citing that they felt “dismissed”, “misunderstood”, and “unimportant”. As a result, many sought behavioral health services outside of the CMC area, resulting in long drive times (up to an hour in some cases). While they stated they had no an issue actually getting to the appointments (they had reliable transportation, were insured, had money for copays, and were able to take the time off of work that they needed), the long drive was an inconvenience that took time away from family and social activities, often increasing stress and exacerbating symptoms.
I asked each person interviewed one open-ended question, “Can you think of anything that made the process of connecting with a provider easier?” While each person had a unique experience with connecting to behavioral health services, common themes emerged. Eleven study participants cited two or more facilitators while five could not identify one facilitator.
Ten participants identified the support of the primary care provider in this practice as being a primary facilitator to engaging in behavioral health services. Support from family and friends was cited by eight participants as making their connection to behavioral health services easier. Four others cited the support of professionals (such as a counselor or spiritual advisor), three cited education, and two cited the use of coping strategies as facilitators. Additionally, one person cited their “own fortitude”, another cited a positive outlook on life, while a third noted their spirituality as facilitators.
Primary Care Provider
–Lack of specialized education
–Feeling unprepared and unsupported
–Lack of coordination between medical and behavioral health care providers
–Significant amount of time involved in assessing, diagnosing, and stabilizing clients with behavioral health disorders
–No services in this area for eating disorders
–Lack of psychiatric providers for medication management services
–Significant amount of stigma in this community
I identified a limitation with the data obtained from AIT during the debriefing communication with the provider. The report identified 57 people with behavioral health diagnoses in the practice setting. The provider, based on his experience with his population, was certain that there were more than those identified in the report. The provider, using a different report that identifies persons in the practice with a Patient Health Questionnaire-9 (PHQ-9) (Kroenke, Spitzer, & Williams, 2001) score of five or greater, identified an additional 69 individuals not included in the researcher’s report. A score of five or greater on the PHQ-9 is an indication of clinical depression in a test subject. As this data was not included in the initial report received from AIT, the researcher was unable to access the information. This resulted in a small sample that may not be truly representative of the demographics of the practice population.
AIT later reported to me that they searched diagnosis code descriptions versus the actual ICD-10 codes. The report that was generated was based on the following diagnosis code descriptions: “Anxiety disorder, Bipolar disorder, Depressive disorder, Obsessive compulsive disorder, Trauma disorder, Dissociative disorder, Eating disorder, Neurocognitive disorder, Personality disorder, Substance Use disorder, and Psychotic disorder”. Because of this limitation, further research will need to be conducted to obtain an accurate prevalence rate and statistical analysis of barriers.
An additional limitation is participation in the study by the male gender. This is cited as a limitation however, it should be noted that the conservative nature of the statistical analysis (using an exact test versus to enhance validity) led to relevant data nonetheless.
It should also be noted that all participants in this study were insured through private insurance companies or Medicare. There were no uninsured participants or participants with state-funded insurance. Barriers may vary in persons who are uninsured or are receiving Medicaid insurance and future research should be expanded to include participants with different insurance plans.
The #1 ranking BACE item is BACE3_2 “Wanting to solve the problem on my own”, with 40.7% of respondents indicating it as a major barrier. BACE3_28 “Concern about what people at work might think, say or do” was ranked 2nd. BACE3_3 “Concern that I might be seen as weak for having a mental health problem” was ranked as 3rd. Of the top 12 ranked BACE-3 items, ten were attitudinal (with six of those specifically related to stigma) and two were structural.
Statistically significant correlations were identified in all demographic categories except employment status. Single people and persons over age 55 were more likely to identify problems with transportation or travelling to appointments as a barrier. While there is fare free transportation available, several of the participants identified that the schedules are difficult to manage. Additionally, they are often very early or late for appointments and wait for up to several hours for their transportation home. This process could prove to be arduous for an individual without a behavioral health disorder but the added anxiety that often accompanies this stress has been reported as “too much to bear” by one participant.
Men and persons under the age of 55 identified not wanting a behavioral health disorder on their record as a barrier. In addition to the concern of having a behavioral health diagnosis on their record, persons under the age of 55 were likely to report difficulty taking time off of work. In light of the fact that a majority of persons over the age of 55 in this study identified that they were either retired or disabled, this is an anticipated result. What I did not anticipate was the fact that more men cited wanting to seek alternative forms of care than women. Given the fact that men were less likely to engage in the research, this could be an anomaly. Further research in this area should be conducted.
I also identified correlations with level of education and the fear of being placed in the hospital against one’s will. It was discovered that participants with less than a Bachelor degree were more likely to identify this as a barrier than those with a Bachelor degree or higher. This was not only an identified attitudinal barrier, but also an opportunity for education from the providers. In my conversations with study participants, I noted that participants with behavioral health disorders and a lower educational level often misunderstood their rights as a patient under current legislation. The participants shared about times when someone they know had experienced an involuntary hospital admission and the impact that this had on them mentally and emotionally. While I was careful to not taint the data by providing feedback, I also heard an opportunity for an educational intervention to help address this barrier.
Important information to consider is that the city of Cape May is home to one of only three U.S. Coast Guard Training Centers in the entire country. Many men and women in the CMC area are either enlisted in the Coast Guard or work on the Coast Guard base. While there were previously policies in place that prohibited persons with certain identified behavioral health disorders from engaging in activities involving weapons, some of those restrictions have been eased. Regardless of the current policies for the U.S. Coast Guard, it would be worth further exploring how many of the individuals identifying this barrier are involved in military service, particularly here in the CMC area, to determine if military connections correlate to this barrier.
Seven people who chose not to participate in the research did so because they reported improved symptoms. Five of those seven reported that it was a result of the care of the PCP
Ten study participants cited the quality of care received from the PCP as being a facilitator to engagement. All ten of the participants were quick to allow the barriers they faced to deter them from continuing to seek community based behavioral healthcare services. As a result, I concluded that the care the PCP provided served as both a facilitator AND a barrier to assisting the participants in engaging in behavioral health care services outside of the PCP office.
*Clement, S., Brohan, E., Jeffery, D., Henderson, C., Hatch, S. L., & Thornicroft, G. (2012). Development and psychometric properties: The Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill health. BMC Psychiatry, 12(36). doi:10.1186/1471-244X-12-36
**World Health Organization [WHO]. (2003). Investing in Mental Health. Department of Mental Health and Substance Dependence, Geneva, Switzerland. Retrieved from http://www.who.int/mental_health/media/investing_mnh.pdf