This digital report summarizes findings from focus groups, surveys, and in-depth research on the topic of youth mental health in the Cape Ann area of Massachusetts.
Contact
Amy Epstein, Regional Prevention Director, City of Gloucester
[email protected] | 978-325-5272
Report Authors:
Alyssa Kogan, Regional Planning Data Analyst
Elaine Zhang, Public Health Planner
Report Design: Elise Harmon, Digital Communications Specialist
Funding:
Project Background
Youth Mental health in North Shore/Cape Ann Communities
Mental health, specifically youth mental health and access to behavioral health services, has become an important priority in the North Shore.
In 2019, the city of Gloucester hosted one of several statewide listening sessions held by Massachusetts Secretary of Health and Human Services Marylou Sudders in order to better understand what barriers and challenges residents face around mental and behavioral health.
Common themes and challenges identified through these listening sessions included lack of mental health providers within the North Shore/Cape Ann Area, insurance, and long wait times for counseling sessions.
The Youth Risk Behavioral Survey (YRBS), which is conducted every two years, assesses health related behavioral issues in youth that contribute to leading of death and disabilities in adults. Survey data from the most recent year (varies for each community since survey is conducted every two years), indicate there are growing mental and behavioral health needs in the region. As seen in the first graph, high school students within the region report having felt depressed or seriously considered suicide at higher rates than Massachusetts’s average. Regarding substances, high school students within the region report lower rates of current usage for alcohol and marijuana when compared to MA but higher rates of current usage for vaping.
The 2019 Beth Israel Lahey Health Beverly Hospital and Addison Gilbert Hospital Community Health Needs Assessment (CHNA) identified mental health as one of the top four priorities in the community benefits service area that includes Gloucester and Cape Ann municipalities (Essex, Gloucester, Manchester-by-the-Sea, Rockport). Mental health—including depression, anxiety, stress, serious mental illnesses, and other conditions—was a major issue across all demographics and socioeconomic populations. In fact, mental health was the issue that people in the community struggled with the most (49%). Among the groups, youth and older adults emerged as priority populations most affected by mental health issues. According to the CHNA, youth reported feeling increased pressure to succeed in school activities, challenges with peers due to social media, and formation of positive interpersonal relationships.
The Lahey Hospital Community Health survey indicated that mental health was the issue that people in the community struggled with the most (49%).
Project Overview
The Gloucester Health Department was awarded a multi-year Tower Foundation grant to identify barriers and challenges faced by North Shore/Cape Ann residents, specifically children and youth, when attempting to access mental health services.
As part of that work, the Regional Youth Prevention Network (RYPN) conducted a series of focus groups with area parents and young people to directly hear their views on youth mental health access with the goals of better understanding additional barriers and challenges parents and youth face when trying to access mental health services. The RYPN asked the Metropolitan Area Planning Council (MAPC), Greater Boston’s Regional Planning Agency, to facilitate and develop a report detailing the findings and recommendations from the focus groups.
Types of Mental Health
Access Points
Outpatient care: Covers a wide variety of care settings that are not overnight, and can include private practice, group therapy, community mental health centers, among others
Inpatient care: Admission to a hospital for overnight care
Schools: Can include care provided by school resource officers, adjustment counselors, licensed mental health professionals, or teachers
Community-based organizations: Nonprofit groups that provide local mental health services or alternative learning models
Focus Group Guide Development:
focus group questions
Development of the focus group questions was an iterative and collaborative process between MAPC, GHD, and The Regional Youth Prevention Network. MAPC developed a set of draft questions aimed at understanding barriers and identifying resources that helped connect parents and youth to the care they were looking for. These draft questions were shared with GHD, who helped prioritize a second draft of the question set. This second set of draft questions was shared with the Regional Provider Network, who were asked to prioritize questions they felt were most important. Additionally, MAPC and GHD used this network's expertise to ensure the questions were phrased in a trauma-informed manner to ensure a safe and positive experience for participants. The process resulted in a final set of 10 questions for the focus groups. Questions were adjusted slightly (e.g., changing from “you” to “your child”) for parent and youth focus group to ensure vernacular is understood between groups. See appendix for full focus group guide.
Recruitment:
The target focus group participants were youth and parents who had attempted to access youth mental health services within the last year. GHD worked with their network of stakeholders to recruit the target population for the focus group. MAPC developed a flyer for GHD to distribute to potential participants that provided more details about the focus groups. See appendix for a focus group flyer.
Top Five Themes
MAPC identified five primary themes based on a final coding and analysis of the focus group data. Focus group participants mentioned a variety of factors that either prevented them for accessing services or enabled them to do so. Even as different participants may have described preventive or enabling factors differently, MAPC staff was able to group similar issues into these five major themes described below. For example, barriers to using certain types of insurance or difficulties maintaining continuity of care were often mentioned as barriers to accessing mental health services but can both be linked to an underlying root cause faced by parents and youth, I.e., the challenges of navigating the mental health and health care system.
Lack of Providers
The limited number of youth mental health service providers on Cape Ann is a primary contributing factor to many of the other challenges that focus group participants enumerated, such as long wait times, having to travel far distances to reach a provider or access specialized care. Almost all focus group subsets mentioned insufficient provider availability. The broad extent of this theme suggests that it is a root cause of other barriers to mental health access. School officials noted that when they refer students, unless they have personal connections already established with providers in the area, their students endure long wait times to get to a provider. Many parents noted a shortage of clinicians that specialize in adolescent care (specifically child prescribers), and once they can find a therapist and establish a connection, the clinician often leaves, highlighting an issue with clinician turnover. This also begs the question: What is contributing to such a large clinician turnover in the area; is it low pay, insufficient support, lack of benefits, or something else? This could be an area of future research to discuss directly with providers.
Navigating the System
Navigating the mental health care system was an underlying issue when focus group participants spoke about attempting to access care, particularly in terms of insurance coverage, identifying a clinician that fits the unique needs of families and youth, and continuity of care. One parent focus group participant who works in the field of mental health care said, “If you don’t know how to navigate these systems, and even if you do, you’re still kind of screwed. You know, it’s a lot of work.”
Insurance coverage was the number one barrier parents identified when trying to navigate the mental health system. Parents often spoke about how time consuming it is to find a clinician or provider that meets their needs and accepts their insurance. As a result, some parents mentioned paying out-of-pocket for their child to see a clinician to avoid long wait times. Moreover, parents told of gaps in coverage due to dual insurances. One parent shared that her disabled son is covered by her employer’s insurance as well as MassHealth. Generally, when individuals have dual insurance, the primary insurance is billed first and then MassHealth is billed secondarily if the primary insurance doesn’t cover a specific service. This parent reflected on a recent experience where they attempted to access mental health services and were denied coverage by both their primary insurance and MassHealth.
Continuity of mental health care, or the quality of care over time, was another barrier parents identified when trying to navigate the health care and mental health care system. Parents noted the lack of wraparound services after being discharged from inpatient treatment. Another example of where continuity of care has posed serious barriers for parents and youth is when students transition back to school after being absent for an extended period. Due to siloed communication among sectors, such as health care and schools, schools are often unaware of sensitive situations the student may be experiencing, making it harder for students to assimilate back into the school environment.
Interactions with Coordinators and Clinicians
The manner in which youth and adults felt they were treated by those they sought assistance from in accessing services and those who provided them clinical care emerged as a significant theme.
Focus group participants shared positive experiences if they felt that their needs were understood by those helping them find clinical support or if they developed a personal connection with their provider. Conversely, participants that described feeling a sense of disrespect, condescension, or lack of compassion from such parties reported negative experiences. These negative experiences were widespread among focus group participants. Many shared stories about such interactions across the spectrum of mental health care – within the schools, in outpatient and inpatient settings, and in engaging care coordinators. Some youth specifically lamented a lack of privacy and confidentiality with their outpatient provider. Other words used to describe unfortunate interactions ranged from "dismissive" to "unresponsive" to "rude."
Although it’s not possible to objectively determine a lack of compassion, there was clearly a perception among youth and their parents that providers did not always treat them in a respectful and compassionate manner, a factor that exacerbated the sense that the system was not accessible to those in need of youth mental health services.
Role of Schools as an Access Point
The role schools play in responding to mental health issues was a prominent theme mentioned in all focus groups. Perspectives on the role of schools varied based on the respondent (parent, youth, school stakeholder) and school district they came from. Identified school-based barriers included insufficient resources (e.g., not enough staff to handle the volume of students that need mental health support), mental health issues handled in a disciplinary manner, and “cookie-cutter” education curriculums. Youth and parents also shared they often felt there was a lack of compassion and trust from teachers in the public school system when they would report on what they were going through. Schools were also identified as an important facilitator in aiding parents and youth in accessing needed care. Specifically, parents noted schools at times played a key role when there were staff willing to champion and advocate for their child’s specific needs, which in turn helped students meet their interim mental health needs or receive a referral to see an outpatient clinician.
Stigma and Perception of Mental Health
Stigma and the negative perception of mental health illnesses was often a concern of parents and youth when trying to access care. A frequently mentioned source of stigma occurred when youth needed to leave school for an extended amount of time for treatment related to mental health challenges. Parents and youth often mentioned how difficult the transition back into school was, and how they felt they were viewed negatively or treated differently. Parents and youth often reported feeling disrespected by schools when dealing with mental health challenges. One parent said that “the school professionals were really kind of condescending and really made me feel like maybe there’s something I’m not doing right.”
Youth also reported feeling a lack of support from their parents when requesting mental health care. A number of youths shared that their parents refused to believe that their children needed care and expressed fear that their reputation within the community (i.e., workplace, neighborhoods) might be jeopardized. Additionally, participants perceive North Shore communities to be smaller in population and more insular with little privacy “because everyone knows everyone so if you’re in therapy then everyone’s going to know.”
What We Heard
“It’s hard. Because try to be in that kid’s place of trying to go back when, like, everyone knows everything about you. And you are walking down the hall, and yes, they are looking at you. And you are trying to function in a normal place, and you’re a teenager, and that means so much to you. So it’s hard. I think -- I don’t know how many of them successfully come back into school and feel good about it.”
— Parent Focus Group Participant (March 2020)
Findings
Focus group participants described various points by which they connected with youth mental health care. Below were the four most common access points identified by parents and youth: each highlighting respective barriers and benefits.
Existing Community Based Organizations
Parents and youth shared examples of how existing community-based organizations or alternative learning models have been able to provide the services that met their needs or connected them to external providers for additional help. Some youth shared that they decided to choose an alternative education pathway when the traditional public-school curriculum did not align with their mental health care needs. Parents who utilized the community-based organizations often noted that they were connected to these organizations through word of mouth or through the recommendation of schools. Parents and youth tended to speak positively about their experiences at existing community-based organization once they were seen.
Barriers
Benefits
What We Heard
Outpatient Care
The most common setting for youth to receive mental health care is in an outpatient setting. Many care touchpoints eventually lead to therapy, whether through direct connections or referrals from school officials, community-based organizations, or inpatient care.
Barriers
Benefits
What We Heard
Schools
The public school system’s role and responsibility in handling youth mental health issues was a prevalent theme across the youth and parent focus groups. From the perspectives of parents and youth, participants felt that the school systems were not accommodating of their mental health needs which resulted, at times, in the disruption of learning. Youth often voiced their frustration around how restrictive traditional public school curriculums are and how the curriculum did not allow enough flexibility for creative learning methods. In response to the prevalence of schools in focus group conversations, MAPC also conducted key informant interviews with school representatives to ensure there was a more nuanced understanding of the barriers.
Focus Group Participants: Barriers
Focus Group Participants: Benefits
What We Heard
School Officials: Barriers
Inpatient
Youth can receive inpatient care (i.e., admission to a hospital for overnight care), when they experience a mental health crisis. Pathways leading to inpatient care can involve parents, schools, or even the youth themselves.
Barriers
What We Heard
Recommendations
The focus groups and stakeholder interviews highlighted numerous barriers that parents, youth, and educators face in obtaining access to mental health services, but participants also suggested several potential solutions that build on what is currently working well across the region.
Below are examples, identified from participants, that provide a pathway to drive more systemic changes. The examples also highlight that the region is already making progress which is important to ensure that momentum is sustained. The following recommendations seek to encourage and reproduce the numerous enablers for youth mental health services cited by parents, youth, and school-based staff.
Training
Model: Psychological First Aid/Teen Mental Health First Aid/Crisis Intervention Training
At a regional level, school districts and local law enforcement have undergone Mental Health First Aid and Crisis Intervention trainings. In order to ensure that mental and behavioral health issues are handled in a consistent and trauma informed manner, training should continue to be provided for school personnel, law enforcement, and expanded to include first responders.
Initial Action Steps:
- Schedule two school personnel trainings in 2021
- Conduct evaluation to assess mental health literacy among school personnel
Recommendation #1: Improve how mental health issues are addressed within public schools
Action Steps:
- Provide regular and refresher trainings for all school personnel that interact with students on a regular basis. Trainings such as Mental Health First Aid and Youth Mental Health First Aid should be provided to all new staff. Refresher courses should be offered for staff every 2 years following their initial training.
- Provide targeted trainings for educators and other school officials around mental health issues that are more prevalent and unique to each high school (i.e., suicide, substance use, anxiety, etc.).
- Provide training on trauma-informed care interventions geared specifically towards educators.
- Conduct biennial evaluation to assess mental health literacy among school staff and educators.
Why?
Parents and school officials often mentioned the need for increased mental health literacy among staff and teachers that interact with students on a daily basis. With increased mental health literacy among staff and educators, the hope is that responses to mental health issues happen in a timely, effective, and compassionate manner.
Support Systems
Model: Gloucester Youth Leadership Council (GYLC)
In wading through the mental health system and navigating the challenges of either experiencing a mental health condition or having a family member with a mental health condition, focus group participants, particularly parents, expressed a desire to connect with other parents both as a source of support and empowerment.
The Youth Leadership Council, convened by the Gloucester Health Department, is a group of teens that works to make positive impacts in the community around issues that impact teen health, also creating a space for teens to connect, share experiences, and have an impact.
Initial Action Steps:
- Invite participation from Cape Ann youth for the next four council meetings
- Test model for incentivizing participation
Navigation
Model: The Navigator Role
Focus group participants mentioned how difficult it is for them to navigate the mental health care system. Issues related to navigation include insurance, finding the right provider they connect with, and long wait times. Focus group participants often voiced their desire for a “one stop shop” that would help them navigate all these barriers. Currently, there is a pilot Navigator Role that is aimed at helping families navigate barriers when trying to access mental health care. Although it is a pilot position, the Navigator Role presents several opportunities for expansion and improvement.
Initial Action Steps:
- Convene the Regional Youth Prevention Network and develop an updated and comprehensive job description of The Navigator to ensure this position is fulfilled by a highly skilled candidate.
- Establish standardized data collection methods to facilitate data-informed decisions in the future.
Recommendation #2: Create supports for parents and youth to navigate the mental health care system
Action Steps:
- Expand the current navigator role to include additional positions that are responsible for the following tasks:
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- Comprehensive case management (including next steps, follow-up, check-ins etc.)
- Intake and triage
- Ensuring warm hand offs
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- Convene all navigators or people in similar roles within the region to create a Learning Community
- The Regional Youth Prevention Network should convene all appropriate stakeholders to develop an updated and comprehensive job description to ensure this position is fulfilled by a highly skilled candidate.
- The navigator should have access to updated information about provider availability and insurance information, community-based programs, specialty programs, alternative schooling programs, inpatient programs, etc.
- Establish a standardized way for the Navigator to collect demographic data from parents and youth (e.g., insurance provider, type of services they are looking for, age, municipality, etc.), provider information (e.g., referral processes, insurance information) to facilitate data-informed decisions in the future.
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- Utilize data to conduct continuous quality improvement efforts such as improving process in how Navigator handles referrals from start to finish, identifying which providers that might need to be removed from list, etc.
- See Navigator survey results for more information
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- Work with the Regional Youth Prevention Network and school districts to continue to promote the Navigator position as a resource for families.
- Put this information on a website where parents and youth can see waitlist time updated in real time.
Why?
A prominent theme from the focus groups was the difficulty parents faced in trying to obtain care for their child.
System Coordination
Model: The Regional Youth Prevention Network
Continuity of care was a key component that focus group participants cited was lacking from their mental health care experiences. They often mentioned that the health care system felt disjointed, with minimal support for patients in ensuring sustainable and comprehensive care.
The Regional Providers Network convenes providers, lending itself to coordination and communication amongst providers in the area. This Network can be bolstered to enhance their authority and tap into their knowledge and potential.
Initial Action Steps:
- Develop 5-year Goal for Network
- Schedule bi-monthly meetings for the Network
Recommendation #3: Formalize comprehensive collaboration and communication within the mental health care space
Action Steps:
- Regular convenings for the Network to provide formal and informal opportunities for people to connect and learn
- Establish a collaborative workplan/agenda that the Provider Network would like to achieve on a yearly basis
- Regular assessment to determine if the appropriate partners are at the table
Provider Network
Model: Children’s Friend and Family
High turnover of clinicians and providers and long wait times were often the root of frustration for parents, youth, and key informants. Parents and youth shared how frustrating it is to form a trusting relationship with a provider or clinician only for them to leave. Key informants also noted that due to high turnover, it creates gaps in continuity of care and a repetitive cycle of staff needing to build trust with cohorts of students.
According to key informant interviews, some community based organizations, such as Children's Friend and Family, have remained consistently successful in retaining providers and clinicians. This presents opportunities for learning and regional collaboration on how to increase and retain the number of providers in all settings.
Initial Action Steps:
- Conduct research with outpatient clinicians (both in private and community-based settings) to determine what could help with retention, reduce turnover, and onboard new clinicians.
- Backed by findings and research, develop a local policy agenda to advocate for change at state level
Recommendation #4: Increase the number of providers in all settings
Action Steps:
- Incentivize outpatient clinicians to work in the North Shore (e.g., subsidy for student loans to attract more people into the field)
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- Actively recruit bilingual and multicultural clinicians
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- Conduct research with outpatient clinicians (both in private and community-based settings) to determine what could help with retention, reduce turnover, and onboard new clinicians.
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- Backed by findings and research, develop a local policy agenda to advocate for change at state level
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- Implement more sustainable funding mechanisms and billing
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- Establish reimbursement rates that ensure mental health and substance use providers to ensure participation with health plans
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- Engage in conversations with local pediatric doctor’s office to explore implementing team-based care, including community-based supports.
- Promote effective use of technology to increase accessibility of the current available providers.
- Develop career ladders and opportunities for new clinicians and providers, peer mentorship programs, specifically for individuals already in communities
Literacy
Model: North Suffolk Public Health Behavioral Health Working group
Promoting mental health literacy to the general population emerged as a key recommendation in order to reduce the frequently mentioned themes of stigma and negative perceptions of mental health. While a local model did not emerge in the research, there are many agencies and organizations within the region that have the influence and authority to promote and normalize a more modern and less antiquated view of mental health issues. For example, the Behavioral Health Working Group from the North Suffolk Public Health Collaborative, recruited and trained youth to deploy a social media campaign aimed at reducing stigma around mental health within the community. This model can be applied to the North Shore/Cape Ann Communities since the foundation is already in place (I.E. The Youth Leadership Council).
Initial Action Steps:
- Mobilize the youth leadership council to create social media campaigns to promote a normalized and holistic concept of what mental health constitutes, including culturally appropriate media and outreach campaigns targeted at immigrant families.
- Conduct regular outreach campaigns within schools to promote and encourage that all the services provided by a school-based clinician, adjustment counselor, school resource officer, etc. are available to students, irrespective of severity of mental health issues.
(Also see Recommendation #1, above)
Recommendation #5: Promote mental health literacy to the general population to reduce stigma and improve perceptions of mental health
Action Steps:
- Mobilize the youth leadership council to create social media campaigns to promote a normalized and holistic concept of what mental health constitutes.
-
- Develop culturally appropriate media and outreach campaigns targeted at immigrant families
-
- Conduct regular outreach campaigns within schools to promote and encourage that all the services provided by a school-based clinician, adjustment counselor, school resource officer, etc. are available to students, irrespective of severity of mental health issues.
- Promote and advertise more holistic examples of self-care
Appendix
GHD is currently piloting a Mental Health Navigator position with support from an existing community-based organization. The Mental Health Navigator assists parents and youth by connecting them with a mental health provider that accepts their insurance coverage. Additionally, the navigator works to ensure that the mental health provider is a good match for the parent or youth’s unique needs, and that the wait time is manageable.
Since the start of this pilot position, the navigator has received a total of 52 referral requests. Referral requests the navigator received were often from parents calling on behalf of their child or parents calling after being referred from an existing provider. The navigator has been able to refer everyone to at least one mental health provider fitting their needs; in some cases, they have been able to provide more than one option. Currently, the navigator works from a list of 53 mental health providers that are located throughout Cape Ann and North Shore communities, primarily Beverly, Danvers, Gloucester, Ipswich, Manchester by the Sea, Peabody, Salem, and South Hamilton.
Based on data collected by the navigator, of the 53 mental health providers that the navigator utilizes, 63% of providers accept some form of public insurance or private insurance and 47% of providers accept both public and private insurance. Tufts Public Health Plan (MassHealth) is the most accepted public insurance option, and Blue Cross Blue Shield is the most accepted private insurance option.
1 E. McCance-Katz & C. Lynch. Guidance to States and School Systems on Addressing Mental Health and Substance Use Issues in Schools. SAMHAS. July 1 2019.