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Increasing Culturally Responsive Care and Mental Health Equity With Indigenous Community Mental Health Workers

There are 600 diverse American Indian/Alaska Native communities that represent strong and resilient nations throughout Indian Country. However, a history of genocidal practices, cultural assaults, and continuing oppression contribute to high rates of mental health and substance use disorders. Underresourced mental health care and numerous barriers to services maintain these disparities. Indigenous community mental health workers hold local understandings of history, culture, and traditional views of health and wellness and may reduce barriers to care while promoting tribal health and economic self-determination and sovereignty. The combination of Native community mental health workers alongside a growing workforce of Indigenous mental health professionals may create an ideal system in which tribal communities are empowered to restore balance and overall wellness, aligning with Native worldviews and healing traditions.

“It all comes back to our heritage and our roots. It is so vital that we retain our sense of culture, history, and tribal identity.” —Wilma Mankiller, Cherokee Nation of Oklahoma ( Mankiller & Wallis, 1993 , p. 246)

American Indian (AI)/Alaska Native (AN) communities represent strength and resilience within a history of attempted genocide, cultural assault, and ongoing systemic oppression. A myriad of factors including historical trauma, continuing discrimination, barriers to services (including culturally effective services), and the failure of the federal government to uphold its trust responsibility to AI/AN communities contribute to persistent substantial mental health and substance use disparities for Native communities. The purpose of this article is to advocate for the employment of indigenous community mental health workers to expand and improve mental health services and systems of care within AI/AN communities—an approach that underscores community resilience and strengths. We describe promising outcomes from Native communities currently using this model and discuss advantages of community mental health workers in delivering care, including increasing tribal health and economic self-determination and sovereignty, reducing barriers and stigma related to seeking care, increasing availability of services and culturally effective care, and reflecting and empowering the Native value of community as essential to maintaining and sustaining population health. A system of care that includes indigenous community mental health workers in addition to Native psychologists, psychiatrists, and other mental health professionals has great potential in improving overall wellness and restoring balance in Indian Country.

Current Context of Native Nations in the United States

Demographics.

The 2016 U.S. Census yielded data showing 5.6 million people self-identified as AI or AN. Within this group, approximately 2.7 million identified as only AI or AN ( U.S. Census Bureau, 2016 ). The majority of AI/ANs live outside federal or state reservations, trust lands, or tribally designated areas, leaving 22% who live on reservations or other trust lands ( Norris, Vines, & Hoeffel, 2012 ; U.S. Department of Health and Human Services, Office of Minority Health, 2017 ). Approximately one third of AI/ANs are younger than 18; the median age for AIs living on reservations is 26 years old compared to 37 among non-Natives in the general population ( National Congress of American Indians, 2018a ; U.S. Census Bureau, 2018 ). The terms Indigenous, American Indian , and Alaska Native encompass individuals from diverse, strong communities who practice different Native spiritual and cultural traditions, speak different languages, reside in different settings, and have different approaches to forming their own cultural identities, often shaped by a wide range of contextual, historical, and relational factors ( Gone, 2004 ; Harris, Carlson, & Poata-Smith, 2013 ).

Tribal Sovereignty and Self-Determination

The 573 federally recognized tribes and hundreds of state-recognized tribes are sovereign nations within the United States ( National Congress of American Indians, 2015 , 2018b ). Self-governance allows for significant policy and programmatic-driven decisions by and for tribal communities in a variety of domains, including health care and economy ( The Harvard Project on American Indian Economic Development, 2008 ). In spite of sovereign nation status, tribal communities still reside within a federal system that has historically undermined their self-determination ( Gone & Trimble, 2012 ) and are challenged by difficult structural and social conditions that differ from the general experiences of others in the United States. These conditions contribute to important contextual factors that influence mental health and overall well-being of AI/AN communities.

Addressing Mental Health with American Indian/Alaska Native Communities

Underresourced mental health care.

The United States has a legal responsibility to provide health care services to AI/ANs as part of the government-to-government relationship with tribal nations dating back to the history of treaties signed with tribes ( Indian Health Service [IHS], 2015 ; Warne & Frizzell, 2014 ). The IHS is housed within the Department of Health and Human Services and tasked with upholding federal responsibility and providing health care services to tribal communities ( IHS, 2018a ). Unfortunately, the IHS is considered a discretionary program with funding decisions reliant on Congress and subject to political influences ( Warne & Frizzell, 2014 ). Historical and contemporary relationships with the federal government have impacted the health status of AI/ANs. As Warne and Frizzell (2014) state, “U.S. history [and current policy] has borne out a unique relationship between AI/AN tribes and the federal government, including forced acculturation, warfare, and severely underfunded health services, leading to severe AI/AN health disparities” (p. S266). In 2014, the per capita allocation for patient care afforded by IHS was approximately one third of per person health care spending nationally and 40% of per prison inmate federal spending, even though tribal communities suffer far greater health disparities, largely due to a history of abuse and neglect systematically carried out by the federal government ( National Congress of American Indians, 2017 ; U.S. Government Accountability Office, 2017 ). The severity of need and potential consequences were highlighted in the U.S. Commission on Civil Rights (2003) report stating the meager IHS budget

can only lead one to deduce that less value is placed on Indian health than that of other populations. If funding levels continue to stagnate, the health status of Native Americans will continue to decline, resulting in even greater needs in the future. (p. 49)

Mental Health Inequities in Native Communities

AI/ANs face some of the greatest challenges to their health, mental health and well-being of any ethnic or racial group in the United States. Mental health related mortality is a priority. A recent study ( Shiels et al., 2017 ) of death certificate data from the U.S. National Center for Health Statistics showed that premature deaths among AI/ANs was highest and increased each year from 1999 to 2014, primarily due to consequences of mental health and substance use disorders such as liver disease and cirrhosis, suicide, and injuries. An estimated 6,600 excess premature deaths occurred in AI/ANs ages 25 to 49 during this time frame.

Morbidity from mental health concerns are similarly elevated and help to elucidate a more nuanced and complicated picture. Mental health-related morbidities are 1.7 to seven times higher among Native youth and adults for conditions including, but not limited to, substance use and posttraumatic stress disorders, and suicide (see Sarche & Spicer, 2008 ). In a longitudinal study of indigenous adolescents from four reservations in the Midwestern United States and four Canadian reserves, results showed prevalence rates for mental health and substance use disorders increased significantly from age 10 to 12 to when youth reached age 12 to 15 ( Whitbeck, Yu, Johnson, Hoyt, & Walls, 2008 ). Results showed an eightfold increase in youth meeting criteria for a substance use disorder; major depressive episode prevalence more than doubled between the two time periods. Conduct disorder and lifetime substance use disorder rates were two to three times higher among this group of indigenous youth compared to the general population ( Whitbeck et al., 2008 ). Intergenerational burden of mental health and substance use disorders was also apparent in high prevalence rates of one lifetime mental health or substance use disorder (43%) or two or more lifetime disorders (31.6%) among these youth’s caregivers ( Whitbeck et al., 2008 ). Another study by Brave Heart and colleagues (2016) with urban AI/ANs demonstrated that approximately 70% and 63% of AI/AN men and women respectively, compared to 62% and 53% of non-Hispanic White men and women, met criteria for a lifetime psychiatric disorder. Almost half of AI/ANs met diagnostic criteria for a psychiatric disorder in the past year; AI/AN women experienced larger gaps with their counterparts then men ( Brave Heart et al., 2016 ). However, differences between groups decreased when analyses adjusted for sociodemographic characteristics. Taken together, despite disparities, there is great heterogeneity in mental health and substance use disorders by age, region, gender, and tribal context. There is also a great need to understand historical and current stressors as root causes that impact mental health, well-being, and the unique role that strengths play in overcoming these inequities within AI/AN communities.

Mental Health and Substance Use Treatment in Tribal Communities

Mental health and substance use as priority areas in Native communities have prompted an increase in literature on treatment. Theoretical and empirical articles have attempted to understand treatment utilization, barriers to seeking mental health care, and treatment preferences. Research has been mixed about treatment utilization. In a recent national sample that included significant urban representation, AI/ANs were more likely to seek mental health treatment compared to non-Hispanic Whites with variations by gender and psychiatric presenting complaint ( Brave Heart et al., 2016 ). However, in a study of Northern Plains and Southwest tribal communities, mental health treatment utilization for biomedical services and traditional healing was low ( Fortney et al., 2012 ). It is challenging to draw conclusions from the current literature given the heterogeneity of AI/AN samples (e.g., geographic region, tribal identity, urban vs. rural vs. reservation residence) and methods (e.g., national vs. local sampling).

Stigma has emerged as one of the most consistent barriers to care across several studies for Native communities. AI/ANs have described stigma about seeking services related to concerns about being weak and how others will view them ( Duran et al., 2005 ; Freitas-Murrell & Swift, 2015 ; Johnson, Bartgis, Worley, Hellman, & Burkhart, 2010 ; Venner et al., 2012 ). Other barriers include concern about maintaining privacy about their presenting psychiatric complaint, trusting providers, as well as lack of transportation, time, financial resources, and social support ( Duran et al., 2005 ; Venner et al., 2012 ).

AI/AN ethnic identification may also have implications for choosing to engage in mental health treatment. In a study of AN college students, those with higher levels of Caucasian identity demonstrated positive attitudes (i.e., openness in therapy, willingness to seek help, and stigma) about seeking mental health therapy ( Freitas-Murrell & Swift, 2015 ), whereas in a separate study of AI college students, those with strong tribal identification reported negative attitudes (i.e., self-reported need for therapy, stigma, openness in therapy, and confidence in service providers; Price & McNeill, 1992 ). However, these two studies used different measures assessing attitudes about seeking mental healthcare and this may explain the discrepancy in results. In addition, research has shown that AI/AN individuals may prefer Native providers for mental health treatment (e.g., Aronson, Johnson-Jennings, Kading, Smith, & Walls, 2016 ; Venner et al., 2012 ). These findings may be attributable to a lack of and need for culturally sound and effective care that honor Native epistemologies underlying health and wellbeing ( Duran et al., 2005 ; Goodkind, Gorman, Hess, Parker, & Hough, 2015 ; Gone & Alcántara, 2007 ; Gone & Trimble, 2012 ; Hodge, Limb, & Cross, 2009 ; LaFromboise, 1988 ; Venner et al., 2012 ).

Indigenous Views of Mental Health, Healing, and Wellness

Numerous authors have identified colonialism (i.e., European contact, land theft, genocidal acts, forced assimilation), its lasting effects (e.g., historical trauma or historical loss; Brave Heart & DeBruyn, 1998 ; Whitbeck, Adams, Hoyt, & Chen, 2004 ) and continuing oppression (e.g., discrimination) as root causes of indigenous mental health inequities ( Brave Heart, 2003 ; Duran & Duran, 1995 ; Goodkind et al., 2015 ; Gone & Trimble, 2012 ; Smith, 1999 ). Colonialism and continued discrimination impact specific tribes differently (e.g., historical events and current context of racism). There is also a general sense of shared suffering ( Brave Heart, Chase, Elkins, & Altschul, 2011 ) that may be reflected in population-level mental health disparities.

Research has shown a direct link between historical trauma (also called historical loss) and depression, anxiety, substance abuse, and indirectly to suicide ideation (e.g., Armenta, Whitbeck, & Habecker, 2016 ; Grayshield, Rutherford, Salazar, Mihecoby, & Luna, 2015 ; Tucker, Wingate, & O’Keefe, 2016 ; Tucker, Wingate, O’Keefe, Hollingsworth, & Cole, 2016 ; Whitbeck, Chen, Hoyt, & Adams, 2004 ; Whitbeck, Walls, Johnson, Morrisseau, & McDougall, 2009 ; Wiechelt, Gryczynski, Johnson, & Caldwell, 2012 ). Burgeoning viewpoints assert that if colonialism and intergenerational historical loss are recognized as the identified problem, it follows that interventions with AI/ANs should be focused on cultural reassertion and revitalization at the individual and community level ( Brave Heart et al., 2011 ; Gone & Trimble, 2012 ; Goodkind et al., 2015 ). In a qualitative study, AI elders discussed that healing from intergenerational historical trauma involves tribal cultural reclamation, including speaking one’s native language, and spirituality ( Grayshield et al., 2015 ).

When considering culturally appropriate mental health care, it is vital to understand cultural views, traditions and practices related to healing and wellness—which far predate contact with Europeans ( Goodkind et al., 2010 ; Hodge et al., 2009 )—directly from and for tribal community members ( Gone, 2004 ; Gone & Trimble, 2012 ). AI/AN beliefs and practices vary by tribe and may include prayer, ceremony, storytelling as a method of passing on traditions, interactions with a traditional healer, and daily practices to sustain balance and wellness ( Gone, 2010 ; Goodkind et al., 2015 ; Whitbeck, Walls, & Welch, 2012 ). A recent study of Dine youth, caregivers, and elders revealed “connections to the land were a vital cultural strength on which to build efforts to promote mental health, wellbeing, and healing” ( Goodkind et al., 2015 ).

Western mental health care is epistemologically different from AI/AN traditional belief systems in a number of ways ( Duran & Duran, 1995 ; Gone, 2010 ; Hodge et al., 2009 ). Several tribal communities have adopted mental health/substance use prevention/intervention programs driven by culture and included in discussions pertaining to the continuum of local community validated practices to practice based evidence with cultural validation to evidence based practice (see First Nations Behavioral Health Association, 2009 ). Related, there has been a call for institutional health care systems supporting Native traditional practices ( Goodkind et al., 2010 ). A convening of traditional healers, researchers, and clinicians provided a definition of traditional healing and traditional healer, in addition to points of integration for AI/AN practices with mental health services ( Moorehead, Gone, & December, 2015 ). Common themes to define traditional healing included relationality (e.g., relation to family, community, higher spiritual power, environment), personal characteristics (e.g., trust in traditional healing process, humor), and continuing culture, history, and teachings. A traditional healer was described as someone who engages in their own wellness, holds traditional and cultural knowledge usually through learning from other healers or elders, believes that an individual holds the ability to heal him or herself, and serves the whole community ( Moorehead et al., 2015 ). Points of integrating traditional healing and western mental health care emphasize working together on culturally based programs, respect for each system of care, and the importance of communication between the two ( Moorehead et al., 2015 ). These views, combined with research demonstrating positive outcomes for those who seek traditional healing, has led to policy recommendations to allocate funding to tribal programs to support cultural traditions and reimburse traditional healing (see Goodkind et al., 2010 ; Payne, Steele, Bingham, & Sloan, 2018 ). Harnessing cultural strengths to promote and sustain wellness, while carrying these traditions forward for future generations, may provide the keystone to culturally informed mental health care for AI/ANs.

Overrepresented While Underrepresented

AI/ANs are overrepresented in statistics defining mental health disparities, while simultaneously underrepresented in the availability of mental health professionals ( Thomason, 1999 ). There is also a pronounced need for AI/AN mental health providers ( Thomason, 1999 ). Tribal community members voicing preferences for Native providers and research demonstrating effective culturally informed interventions has led to a call for increasing AI/ANs in mental health fields ( Aronson et al., 2016 ; Gone, 2004 ; Gone & Trimble, 2012 ; LaFromboise, 1988 ; Thomason, 1999 ). A report by the U.S. Department of Health and Human Services (2001) revealed there are approximately 101 mental health providers (i.e., counselors, psychiatric nurses, social workers, psychiatrists, and psychologists) per 100,000 AI/ANs compared to 173 per 100,000 White Americans. Recent data estimates there are approximately 260 indigenous Psychologists across North America (J. Gone, personal communication, March 17, 2018). The paucity of Native psychologists leads to a lack of academic role models for Native students interested in mental health professions ( LaFromboise, 1988 ; Thomason, 1999 ). AI/AN researchers also carry with them unique knowledge of culturally sound and ethical research methodologies to protect communities against harm ( Walters & Simoni, 2009 ). Federal grants have supported recruiting and retaining AI/AN doctoral psychology students, including the Indians into Psychology Doctoral Education program at the Universities of North Dakota and Montana, American Indians into Psychology at Oklahoma State University, and Alaska Natives into Psychology at the University of Alaska ( Trimble & Clearing-Sky, 2009 ). Growing the base of AI/AN psychologists is necessary to bring indigenous views and practices to accelerate progress to mental health equity for Native peoples. Many newly trained AI/AN psychologists have the ability to choose academic research positions to address inequities through research and policy over providing direct clinical service. Thus, it may take decades to reach a sufficient number of trained AI/AN clinicians to attend to treatment needs in their own or other tribal communities.

Indigenous Community Mental Health Workers

While efforts continue to expand the AI/AN professional mental health treatment workforce, there are alternative approaches to concurrently fill gaps. A promising strategy is to use task-shifting ( Becker & Kleinman, 2013 ; Kakuma et al., 2011 ; World Health Organization, 2008 ). Task-shifting is “a process whereby specific tasks are moved, where appropriate, to health workers with shorter training and fewer qualifications” ( World Health Organization, 2008 , p. 7). This approach helps address critical health priorities and provider shortages. Task-shifting is not a stand-alone solution and should be used in combination with additional approaches to increase providers ( World Health Organization, 2008 ). For example, paraprofessionals or local lay providers may be trained in evidence-based mental health practices (EBPs) and provide mental health interventions in community settings (e.g., home, school, summer camps). In low resource settings globally, there is now robust evidence to show that task-shifting delivery of evidence-based mental health care to community health workers, including delivery of EBPs, can be implemented with fidelity and are effective for treatment of common mental health disorders, including depression, posttraumatic stress, and substance use disorders ( Singla et al., 2017 ; Van Ginneken et al., 2013 ). In fact, there are 27 randomized controlled trials ( Van Ginneken et al., 2013 ) of task-shifted mental health interventions that have been delivered in a variety of settings including with refugees, in settings of ongoing conflict ( Weiss et al., 2015 ), among HIV affected populations ( Kane et al., 2017 ; Murray et al., 2013 ), in low-resource contexts generally ( Chowdhary et al., 2016 ; Rahman, Malik, Sikander, Roberts, & Creed, 2008 ), and with other trauma affected populations ( Bass et al., 2013 ; Bolton et al., 2014 ). There are now growing calls for using this approach to address treatment gaps in the United States ( Hoeft, Fortney, Patel, & Unützer, 2018 ; Kazdin, 2017 ; Kazdin & Rabbitt, 2013 ; National Institutes of Mental Health, 2016 ; World Health Organization, 2008 ).

There is a ready workforce of passionate, experienced, empathic and motivated indigenous paraprofessionals who are eager to address their communities’ priorities ( Barlow & Walkup, 1998 ; Chernoff & Cueva, 2017 ; Gampa et al., 2017 ). Throughout this article, we use the terms paraprofessional and community mental health worker to describe AI/AN health workers engaged in task-shifting. We use the terms Community Health Aide, Behavioral Health Aide , and community health worker pertaining to specific funded programs and/or use the same terminology used by published literature when providing existing examples. Tribal nations in the United States have been unrecognized innovators in using this approach for decades (e.g., Barlow, 2013 ; Barlow et al., 2013 ; Walkup et al., 2009 ). As an example, the Alaska Community Health Aide Program was conceptualized in the 1950s, formalized in the 1960s, and since 1968 has continuously been funded by Congress ( Alaska Community Health Aide Program, n.d. ). AI/AN community mental health workers may serve a variety of roles including patient navigation and case management of existing services, provide adjunctive culturally appropriate psychoeducation to families, and help tap local cultural assets and resources to promote mental wellness ( Barlow & Walkup, 2008 ; Cueva, Cueva, Dignan, Lanier, & Kuhnley, 2014 ; Kelley, DeCourtney, & Owens, 2014 ). Appropriately trained indigenous community health workers have the benefit of sharing a common history and similar challenges with the individual whom they serve. In contrast to Native scholars who may have to leave their home community to pursue a mental health degree, indigenous community mental health workers have always been embedded within the community. They possess familiarity with community dynamics, kinship patterns, spiritual values, attitudes, language and communication styles, and patient expectations ( Miller & Pylypa, 1995 ; Roman et al., 2007 ; Gampa et al., 2017 ). This common ground can facilitate rapport, trust and retention ( Kelley et al., 2014 )—critical factors in mental health intervention effectiveness—and illuminate culturally meaningful content. Native community mental health workers also have natural capacity to navigate cultural mores and bilingual language demands that allow them to operate effectively in multigenerational contexts, potentially increasing engagement, compliance and ultimately, therapeutic effect ( Barlow, 2013 ; Gampa et al., 2017 ).

Indigenous community health workers are providing valuable services across health, wellness, and community support, including, but not limited to, cancer prevention (e.g., Cueva et al., 2014 ), oral health (e.g., Braun et al., 2016 ), and connecting patients to health or community resources (e.g., transportation services; Gampa et al., 2017 ). Research on AI/AN mental and behavioral health interventions has shown task-shifting to Native community mental health workers to be feasible, acceptable and effective. The Johns Hopkins Center for American Indian Health has developed an early childhood home-visiting intervention, called “Family Spirit,” that employs Native paraprofessionals to serve teen mothers with high unmet behavioral and mental health needs from pregnancy until their child’s third birthday. This program has documented significant impacts on reducing maternal risk for depression and illicit substance use, while improving children’s social, emotional and behavioral development in ways that predict lower risk for behavioral and mental health problems later in life ( Barlow et al., 2013 ; Barlow et al., 2015 ; Walkup et al., 2009 ).

Over the past decade, Substance Abuse and Mental Health Services Administration funded programs have demonstrated the significant role Native community mental health workers can provide in suicide prevention ( The National Tribal Behavioral Health Agenda, 2016 ). As an example, AI community mental health workers have delivered a culturally adapted evidence-based intervention to youth who have attempted suicide and their family members (see Cwik et al., 2016 ). Benefits of Native community mental health workers leading this work included increased cultural awareness and understanding during the intervention, as well as openness/comfort in meeting about this sensitive topic, thereby reducing stigma ( Cwik et al., 2016 ). Practical barriers to mental health care (e.g., wait times; lack of transportation) were also ameliorated through community mental health workers visiting home or another private location. AI youth who received the intervention had reduced depression symptoms, reduced suicide-related outcomes, and more positive attitudes toward seeking mental health care. Further, AI youth reported that the community mental health workers were respectful, knowledgeable, professional, and helpful ( Cwik et al., 2016 ).

Within AI/AN communities, there are a number of unique challenges for community mental health workers. Social and cultural beliefs relating to family and kinship relationships of the paraprofessional and client may introduce complexity to who can provide care, who is involved in care-related decisions, trust, and confidentiality ( Chernoff & Cueva, 2017 ; Miller & Pylypa, 1995 ). Related, community health workers must navigate a spectrum of diverse traditional cultural, spiritual, or religious beliefs within a single community ( Gampa et al., 2017 ). Although growing up and living in a tribal community/village may have advantages for providing shared context and understanding, there are also matters pertaining to maintaining wellness of community health workers. When living and working in a small tribal community, it may prove extremely difficult for community health workers to disconnect their work from their daily personal life ( Chernoff & Cueva, 2017 ). During times of loss, serving dual roles as a community member also experiencing this loss and providing support to grieving families may conflict ( Gampa et al., 2017 ). These experiences compounded with feelings of isolation and lacking professional social support/coping can take an emotional toll or lead to burn out ( Chernoff & Cueva, 2017 ; Gampa et al., 2017 ). Further, community health workers may desire increased education and training to broaden their scope in addressing community priorities ( Chernoff & Cueva, 2017 ).

Overall, the above potential barriers could be addressed proactively prior to a tribal community or health system implementing indigenous community health workers and should continuously be assessed for to foster effective care and wellness for communities. Community health workers may participate in training programs underscored by indigenous ways of knowing. For example, a cancer education training program guided by incorporating art, movement, and culture, was delivered to a variety of AN community health workers, including Behavioral Health Aides. Results of qualitative interviews and quantitative surveys demonstrated increased knowledge about cancer prevention, sharing arts and culturally based methods of education during patient interactions, and decreased stigma around community health workers talking to patients about cancer and promoting behavior changes to prevent cancer four years posttraining ( Cueva et al., 2014 ). Notably, community health workers reported their own positive health-promoting behavior changes as a result of participating in training and sharing this information with their families and local communities. This single example illustrates ways in which community health workers’ training and impact can reverberate and foster culturally based wellness for themselves, their families, and entire villages/communities. Other tribal agencies and programs may follow this model guided by local indigenous epistemologies and practices and provide training on the barriers discussed above—how community health workers can best provide care and connections to other forms of care across diversity of cultural and spiritual identity; how to engage in self-, family-, and community-care given their coinciding unique roles; and coping with feelings of isolation, grief, loss. Further, ongoing educational/training opportunities should be provided to community health workers. If a community is located near Tribal Colleges and Universities (see U.S. Department of Education & the White House Initiative on American Indian and Alaska Native Education, 2018 ), there may be points of collaboration to promote education and training of community mental health workers. Examples of trainings and courses that encourage community health worker participation include the summer research institute at the Northwest Portland Area Indian Health Board ( Oregon Prevention Research Center, 2018 ) and AI public health courses at the Johns Hopkins Center for American Indian Health (2018) .

Within mental health more generally, use of paraprofessionals from the community may increase professional capacity, help with acceptability of treatments ( Filene, Kaminski, Valle, & Cachat, 2013 ; Mendenhall et al., 2014 ), contribute to increased uptake and retention, and enhance scale-up and sustainability of critical mental health interventions for underserved groups ( Hoeft et al., 2018 ). Specific to Native communities, the training and employment of Native community mental health workers can increase the cultural appropriateness of care and decrease stigma and other access barriers to mental health care (e.g., Cueva et al., 2014 ; Cwik et al., 2016 ). In addition, it may offer a source of local workforce and economic development, reinforcing tribal self-determination. Further, it may produce continuing education interests for community mental health workers. Together, these byproducts of employing indigenous mental health workers could lend more generally to primary prevention in AI/AN communities to increase economic and financial opportunities while working to promote mental health and well-being ( Barlow & Walkup, 1998 ; Cwik et al., 2016 ).

The federal government upholding trust responsibility to AI/AN health care is falling short while significant mental health inequities persist in tribal communities. The needs of Native communities require imminent solutions given continued mental health and substance use disparities and underresourced services. According to The National Tribal Behavioral Health Agenda (2016) , mental and behavioral health issues necessitate a “communitywide response” with tribal ownership being vital. Tribal empowerment, mobilization, and capacity building underlie tribal sovereignty and represent methods that will provide an appropriate response to the needs of communities ( Chino & DeBruyn, 2006 ).

Capacity building within tribal nations is highlighted as a funding priority for the Department of Health and Human Services ( U.S. Commission on Civil Rights, 2003 ) and has been emphasized as a strategy to overcome AI/AN mental health inequities ( The National Tribal Behavioral Health Agenda, 2016 ). The goal should be that Native community members have equal capacity and opportunity to fill all necessary roles in the ideal mental health care system ( Barlow, 2013 ). The combination of a growing workforce of Native mental health professionals (e.g., psychologists) alongside indigenous community mental health workers has the ability to widen scope, increase local and cultural assets, improve a continuum of care, and work to reduce disparities. Indigenous communities interested in developing and implementing a community mental health worker program can obtain information from community-driven examples and peer-reviewed literature describing existing programs (e.g., Alaska Community Health Aide Program, n.d.; Barlow et al., 2013 ; Cueva et al., 2014 ; Cwik et al., 2016 ; Sehn et al., 2018 ). In addition, there are reports that reference how this program is being funded by Medicaid in certain states (see Alaska Center for Rural Health, 2003 ) and opportunities for resources, funding, and training through IHS (see IHS, 2018b ).

Indigenous community mental health workers delivering care provides a number of distinct advantages. By creating a local workforce, indigenous community mental health workers also represent self-determination and sovereignty over economy and health care. In addition, Native community mental health care workers possess knowledge and understanding of local history, culture, community, and spirituality which may help maintain rapport and retention in care with community members. Further, familiarity with interconnections between physical, mental, emotional, spiritual, and the environment support Native worldviews of health and wellness ( The National Tribal Behavioral Health Agenda, 2016 ) that may be incorporated into care. This model has the ability to address previously identified barriers to treatment for AI/ANs including stigma ( Duran et al., 2005 ; Freitas-Murrell & Swift, 2015 ; Johnson et al., 2010 ; Venner et al., 2012 ), practical barriers such as transportation ( Cwik et al., 2016 ; Venner et al., 2012 ), and preference for a Native provider ( Aronson et al., 2016 ; Venner et al., 2012 ). Finally, indigenous community mental health workers delivering interventions related to maternal and child health and suicide prevention have already shown positive outcomes related to mental health promotion, reduced substance use, and improved attitudes toward healing mental health issues ( Barlow et al., 2013 ; Barlow et al., 2015 ; Cwik et al., 2016 ; Walkup et al., 2009 ).

Native community health workers significantly contribute to the wellness of an individual they meet with and the entire community ( Gampa et al., 2017 ). This is noteworthy, as “relationship is the cornerstone of tribal community, and the nature and expression of community is the foundation of tribal identity” ( Cajete, 2000 p.86). By promoting community-level solutions to health and wellbeing, tribal communities may reclaim collective strength and effectiveness ( Chino & DeBruyn, 2006 ). Indigenous community mental health workers are proving to be a promising solution to overcoming mental health inequities while reinforcing community-focused cultural values and healing traditions. A coalition of Native community mental health workers alongside Native mental health professionals may be the keystone to an ideal system to eliminate mental health disparities and restore balance and wellness throughout Indian Country.

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• Open access
• Published: 26 July 2021

A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic

• A. R. McKinlay 1 ,
• D. Fancourt 1 &
• A. Burton 1  

BMC Geriatrics volume  21 , Article number:  439 ( 2021 ) Cite this article

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The objective of this study was to examine factors that threatened and protected the wellbeing of older adults living in the UK during social distancing restrictions due to the COVID-19 pandemic.

Semi-structured telephone or video interviews with 20 adults aged over 70. Purposive sampling methods were used to increase diversity within the group. Transcripts were analysed using reflexive thematic analysis.

Participants described potential threats to their wellbeing during the pandemic, including fears for mortality, grieving normal life, and concerns for the future. Participants also described activities and behaviours that helped to protect their mental health, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills. Many participants drew on their resilience and life experience to self-manage fear and uncertainty associated with the pandemic, using their time during lockdown to reflect or organise end-of-life affairs.

This study provides UK-based evidence that while some older adults experienced challenges during the first wave of COVID-19, many were resilient throughout social distancing restrictions despite early reported concerns of mental health consequences among the older adult population. Our findings highlight the importance of maintaining access to essentials to promote feelings of normality and use of social support to help reduce uncertainty in times of pandemics.

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Introduction

Existing concerns about the wellbeing of older adults were exacerbated when severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was declared a pandemic by the World Health Organisation on March 11th, 2020 [ 39 ]. Older adults were identified as especially vulnerable to the virus with high rates of fatalities [ 17 ], particularly in some residential care homes [ 9 , 35 ] during the first wave of the virus [ 23 ]. Hospitalisation rates were high among those living with long term conditions (LTCs) [ 10 , 17 ], many of which affect the older adult population [ 12 , 30 ]. The UK government imposed their first social distancing restrictions on March 23rd, 2020, where adults over the age of 70 were required to self-isolate and “lockdown” at home for 3 months to reduce their infection risk.

Drawing on evidence of negative psychological responses observed during previous epidemics [ 5 ], concerns rose among stakeholders at the start of the pandemic that there would be adverse effects of the COVID-19 pandemic on mental health and wellbeing. Whilst under usual circumstances, older adults do tend to experience psychosocial wellbeing that is equal or better than that of younger age groups [ 11 ], it was predicted that due to the specific isolation rules for older adults and their heightened risk from the virus, psychosocial consequences such as loneliness would be exacerbated in older age groups [ 21 ], leading to negative effects on mental and physical health [ 22 , 34 ]. At a population level, mental health during the COVID-19 pandemic was negatively impacted [ 42 ], but evidence suggests older adults on average experienced more stable and less negative outcomes compared with other subgroups [ 20 , 38 ]. It is presently unclear why this was, or what underlying factors accounted for the experiences reported by older adults during lockdown.

Several theories could help to explain the apparent psychological resilience of older adults during the pandemic. Offers of support from social contacts [ 25 ], a stable living environment [ 6 , 7 ], cohabiting with others [ 19 ], and financial security [ 20 ] may have helped protect many in this group against adverse effects of social distancing measures by providing a psychological buffer against distress. Additionally, older adults may draw on previous life experiences to perceive a greater sense of coherence in the events of the pandemic. Sense of coherence theory incorporates comprehensibility (ability to understand and integrate), manageability (ability to navigate and manage) and meaningfulness (sense making) in relation to interpretation of a new health threat [ 1 ]. It has been shown to support better navigation of life stressors [ 1 ] and is a strong predictor of health status among older adults [ 16 ]. Life wisdom accumulated by older age has also been found to increase the use of problem-focused coping skills, which may protect against distress [ 14 ]. However, whether factors such as these do indeed explain the responses amongst older adults remains unexplored.

Understanding the factors that are transferable across age groups is essential in developing future interventions and policy for those most at risk of harm due to social distancing measures during the pandemic. Further, whilst the average mental health symptom scores and wellbeing levels of older adults have been better than amongst younger age groups during the first wave of the pandemic in the UK [ 15 ], this does not necessarily imply that older adults were psychologically unaffected. Therefore, this study explored in detail the experiences of older adults living in the UK, with two specific research questions: (1) How was the mental health of older adults affected during the pandemic? (2) What factors have protected mental health in older adults during this time?

Study design

This research was undertaken as part of the COVID-19 Social Study (CSS) that began on March 21st 2020 [ 6 , 7 ], which is the largest UK panel survey study on social life during the COVID-19 pandemic. The overall aims of this work are to explore the psychosocial impact of the pandemic among people living in the UK. In this qualitative substudy, conducted separately from the CSS survey, we elicited perspectives of older adults through qualitative interviews, which were carried out from May until September in 2020. We deployed phenomenological methodology to interrogate the data and focus on individual accounts of experience, coupled with reflexive thematic analysis techniques for analysing and framing the research data. The University College London Ethics Committee reviewed and approved this study (Project ID: 14895/005). Content in the following sections are informed by the COREQ reporting guidelines [ 37 ].

Recruitment

Eligibility criteria included: aged 70 years or older, and the ability to speak English sufficiently to understand the study participant information sheet and consent form. We recruited participants by listing the substudy in the CSS newsletter (reaching 3919 subscribers), social media, and through two community organisations who circulated study information within their networks. We did not record response rates during recruitment. People interested in participating were asked to contact the research team directly via email. In order to understand a range of individual experiences, we screened for characteristics (such as gender, ethnicity, educational level) based on previous findings highlighting how some demographics factors have been associated with adverse mental health during the pandemic [ 15 ]. Thus, we used purposive sampling methods to ensure that 20 adults aged over 70 were selected from diverse backgrounds in terms of gender, ethnicity, marital status, and living situation. Recruitment ended after 20 one-off interviews, as the lead author AM identified no new themes during the analysis.

A researcher (AM or AB) responded to expressions of interest in the study with further details about the study and an invitation to ask additional questions. All participants then provided written informed consent prior to attending a remote interview by telephone or video call. Participants were offered a £10 shopping voucher as an expression of gratitude. A team of female, postgraduate-level, qualitative healthcare researchers conducted all interviews (AM, AB, LB, AR, SC). No researcher had prior relations with any research participant. Interview times ranged from 16 to 85 min and lasted for 50 min on average. A complete interview guide can be found in Supplementary File  1 . In brief, interview topics included: normal life before the pandemic, understanding of social distancing guidelines, social life, mental health, and prospection (for question examples, refer Table  1 ). Interview guide questions and prompts were developed based on concepts from social integration and health theory [ 2 ] and Antonovsky’s Sense of Coherence theory [ 13 ]. For example,  “Has the pandemic meant that you have any worries for the future? How are these different from the worries you had before?” Although all general topics were discussed during interviews, not all questions or prompts were used or indeed relevant to each participant’s unique circumstances. Interviewers were guided about the questions and prompts to use according to participant responses.

Data analysis

Researchers audio recorded the interviews with consent from participants, which were then transcribed verbatim by a professional transcription service. All transcripts were manually checked for anonymity after transcription before importing into Nvivo version 12 for analysis. Transcripts were not returned to participants for comment or correction, nor did they provide feedback on the findings. For consistency of coding approach, AM and AB double coded 3 transcripts at the start of data analysis and discussed issues of salience raised by participants. We did not calculate the intercoder reliability or quantify agreement during this stage [ 29 ], but rather focused on the impressions that both researchers had on topics of importance when coding the same passage of text. The lead researcher (AM) used an inductive and deductive, reflexive thematic analysis approach, informed by Braun and Clarke [ 3 , 4 ]. An initial coding framework was established from the topic guide, which was formulated based on supporting theory regarding social network structure, social ties, social support (i.e., [ 1 , 2 ]). This framework was applied to each transcript through line-by-line coding, then the framework was updated with new codes as AM identified new concepts in the transcripts described by participants. Themes and subthemes were therefore developed based on participant narratives, and these were presented to the CSS research team on 3 occasions throughout the analysis stages for formative feedback.

Of those who agreed to take part, 9 participants were women and 11 men, with an average age of 79 (Table  2 ). Fourteen participants reported having a physical health condition, including hypertension, diabetes, arthritis, high blood pressure and cancer. Two participants had an anxiety-related mental health condition diagnosed prior to the pandemic, and 3 said they had caregiving responsibilities for a spouse or family member.

Participants reported varied and nuanced experiences from the outset of the COVID-19 pandemic. We therefore generated two overarching themes, each with 4 subthemes. Many participants described potential threats to their wellbeing, including fears for mortality, grieving normal life, restricted access to support, and concerns for the future. However, many spoke of how they protected mental health in response to pandemic-related uncertainty, including adopting a slower pace of life, maintaining routine, socialising, and using past coping skills.

Potential threats to wellbeing

Some participants described a transient period of uncertainty at the start of the first UK lockdown, associated with nervousness and lack of sleep that resolved quickly. Many were understandably concerned about the impact the pandemic was having on their end-of-life experience and consequences for the rest of the world (Table  3 ). Overall, the government restrictions were described as “fair enough” and “required” by many; however, a commonly reported concern among participants was a fear of needing healthcare assistance during the COVID-19 lockdown. Some participants were worried about catching COVID-19 and additional risks due to their age, ethnicity, and medical history. Others said that lockdown measures meant they were unable to engage in activities that usually formed part of their self-care routine.

Concerns about end-of-life, ageing, and mortality

More than half of the group spoke about how the pandemic caused them to think about their experience of end-of-life, ageing, and mortality.

‘It’s just this idea of all of a sudden realising that I’m getting really old. I think that may be the biggest thing, and it’s a combination of getting really old, and the pandemic is probably accentuating it a bit.’ p10, female, aged 75-79

Those who were retired were particularly worried about the physical or cognitive impact of lockdown on their experience of ageing.

‘I thought I’m going to be forced into being isolated at home. Can’t go to the gym, can’t go out walking, I’m going to physically deteriorate. And I really was quite scared about that.’ p1, male, aged 80-84

Some planned for the possibility of becoming unwell from COVID. For instance, one participant had instructed his family to “stay away” should he become gravely ill, to protect them from the virus. For several participants, a reminder of their own mortality risk came from knowing someone who had passed away from COVID:

‘We’ve had one friend who was in his sixties… Suddenly went into hospital went on a respirator and sadly he died. He’s the only person we know who has directly been affected by it. It hits you and it makes you realise your own mortality. Especially when they keep saying it affects older people worse, so you do worry.’ p13, male, aged 75-79

Several participants described concerns about their perceived vulnerability to COVID due to their age, ethnic group, or pre-existing health concerns:

‘It is scary for us at our age. The thought of getting COVID, that really frightens me and frightens me for anybody close to me that if they got it. It really terrifies me. So, we have been very, very careful.’ p11, female, aged 70-74

Grieving the loss of normality

Understandable emotional responses and a longing for normality were frequently described by participants. Some felt the activities they previously enjoyed, like travelling, going to the theatre, or “hitting a tennis ball,” would never return to the normal they were used to. Others said they felt their life was on hold until the virus was under control or a vaccine was introduced.

‘The new normal is not going to be at all like the old normal, I don't think. We won’t really be able to live the kind of life that we lived before until there’s a vaccine, and it looks as though the vaccine is going to be a very long way off.’ p4, female, aged 70-74

Some said they felt grief about the impact COVID was having on the world, particularly regarding death, hardships, and suffering of others.

‘I knew of the wars and the disease and the hunger, but I think COVID has just put a whole blanket round the lot of it and makes it so immense, the state of the world. The horrible state of the world and that is very depressing when you think about it.’ p19, female, aged 80-84

Several said they did not think a COVID vaccine would help life “go back to where we were before.”

‘Whatever happens, even if a vaccine comes, we will never return to shaking strangers’ hands.’ p16, male, aged 75-79

Healthcare concerns

Concerns about catching COVID were variable among the group, but many were more fearful of being hospitalised for any reason because they believed they were at increased risk of death.

‘A lot of people are scared stiff of catching [COVID], I’m not. The only thing I’m scared of is being carted off to a hospital. I want to die peacefully at home, and I would happily do that any night.’ p8, male, aged 90-94

Those living alone in particular worried about the lack of available health services during lockdown, should anything “go wrong” with their health independently from COVID.

‘A friend of mine has just been diagnosed with breast cancer. She’s had to wait about nine weeks for her op… so you worry about if something like that happened to me, would I get the medical attention I need?’ p12, female, aged 75-79

The potential health threat of COVID meant some participants were scared to leave the house.

‘I do feel that perhaps I should be going out more and that sort of thing, but myself and many, many, almost all my friends say that they are very scared to go out.’ p2, female, 70-74

Several participants had decided to self-isolate before the national restrictions were introduced, mainly due to concerns about age-related vulnerability and pre-existing health conditions.

‘Come mid-March when it all happened… we decided ourselves to lockdown before other people did… I’m over 75 and I’ve got blood pressure controlled by medication but I’m over 75. My BMI was over 30… So, I was worried and we were worried. So, we totally shut down.’ p16, male, aged 75-79

Unable to engage with activities that protect wellbeing

Due to social distancing and travel restrictions, some participants were unable to engage in activities such as weekly religious ceremonies, theatre groups, and sports. Although some activities were able to be undertaken online, this was not always possible.

‘Since COVID, [community activities have] all closed down. Well yes, the book club totally because we can’t discuss books over the phone and also people are of an age where you can’t do social media, whatever you call it.’ p19, female, aged 80-84

Several participants commented on the consequences of an abrupt change in routine on their wellbeing during lockdown.

‘That was the first thing that hit me, boredom. I had no idea what the hell am I going to do next, because I was used to a routine and suddenly the routine was completely disrupted…Now suddenly I had nothing to do and I was really lost. I was walking round the house like a bloody zombie trying to find something to do.’ p15, male, aged 80-84

Protective activities and Behaviours

Despite voicing threats to wellbeing, many participants were positive in reflecting on their lockdown experience. This was attributed to a slowed pace of life, maintaining a routine, using coping skills and resources, and accessing social support (Table 3 ).

Slowing the pace of life

The most commonly reported experience during lockdown was feeling like the pace of life had slowed on an individual and societal level, with more time alone to reflect. Although some participants had described a loss of leisure during lockdown, many had found time for new hobbies, reading, crafts, gardening, and learning a new language.

“Sometimes I wake up in the morning, and I think, oh, it’s another day in lockdown, but I think… there are some little positive benefits…Before lockdown, we were all rushing around doing lots of things, and now we’ve had to slow down. And actually, slowing down has been quite nice. And we’re living in the kind of retirement now that, maybe, our grandparents might have lived, when you just cultivate your garden and do your knitting and crochet... But just generally living a slower pace of life.“ p4, female, aged 70-74

Others felt that being required to stay at home presented an opportunity to focus more on their health by going for regular walks and taking up new forms of physical activity. For some, this was the first time in decades they had been so physically active.

“I’ve now started to ride a proper bike as well. I live in a Close, so we don’t get any through traffic and I can cycle around that Close and I do a few laps. But I haven’t ridden a bike for 60 years.” p1, male, aged 80–84

Half of the group said the slowed pace of life gave more time for introspection: “I’m not rushing around so much anymore, it’s given me the time and the opportunity to notice small things.” p4, female, aged 70–74. In particular, many women in the group said they reflected on their life differently and in a more meaningful or positive way than before. Some used this process of reflection to think about the changes they would make to their lives as a result of their pandemic experience.

‘Having grown quite a lot, I feel quite positive about that. I also think I’m going to try and, maybe, achieve more things when I come out of this [lockdown]. I think when you retire, and as you get older, you become very comfortable in your life. I think, perhaps, I was a bit too comfortable. I need to get out and be more proactive.’ p6, female, aged 70-74

Benefits of routine and social responsibility

Nearly half of participants said that maintaining a routine and sense of purpose was important for their wellbeing during the COVID-19 lockdown: “ You have to have a purpose you see. I think mental resilience is all about having a sense of purpose.” (p15, male, aged 80–84).

Many female participants said they experienced meaningful benefits from social responsibilities, such as cooking a meal for family, phoning friends to check in, or caring for a pet:

‘The important thing is to have the necessity to do things. Whether it is to get in touch with people, to write a piece of something… Obligations are a good source of maintaining ones feeling of self-worth, if you like. So I think it’s very important to make sure that whatever it is, even though you may feel oh what a nuisance I’ve got to do that, the very fact of having to do it is a great psychological benefit.’ p3, female, aged 70-74

Social interactions and support

The nature of socialising had changed since the start of lockdown for many but not all participants. Several said they were socialising to try to carry on “life as normal” , particularly keeping in regular contact with family. For some, this resulted in strengthened relationship bonds and connectedness:

‘I think it has made me and my husband stronger really. We’ve never spent as much time together actually… I think we’ve coped with the shopping and organising that. And we’ve been baking together, we’ve never done things like that. And we took it in turns to cook and tidy up after. We have done really well together. I’m really proud of us.’ p11, female, aged 70-74

Utilising skills, experience and accessing practical resources to cope

Participants who had used mental health services in the past spoke of utilising the skills they had previously learned to help cope with the COVID-19 crisis, including use of mindfulness and meditation.

‘I had a wonderful counsellor who I saw about once a year, and she would set me on the right path. And eventually, after many years of trying, I found a mindfulness and meditation book, about the middle of last year… so I feel that that has been a great help to me. Usually I try in the morning and certainly in the evening, before I go to bed, I do some meditation.’ p2, female, 70-74

Others described experiences of hardship in the past that they used as a comparison with COVID times, such as living through war, displacement, and illness:

‘I was diagnosed with what they call non-invasive bladder cancer… Having gone through the concern of something like that, perhaps Covid, you know, you put it into perspective.’ P13, male, aged 75-79

For some who lived alone, they spoke of being accustomed to isolation long before the pandemic arrived: “I’m a fairly sort of isolated person anyway.” p1, male, aged 80–84 . Several said they were accustomed to being alone due to widowhood or retirement, and therefore lockdown did not prompt a dramatic change in their daily living or social life:

‘I’ve been retired for a nice long time… So, in many ways the lockdown, on one side it hasn’t impacted a great deal, because I was used to being at home and certainly over the past two years to being home alone.’ p20, male, aged 80-84

Participants frequently mentioned their access to practical resources and basic necessities that helped reduce uncertainty, such as access to online shopping for home food deliveries and offers from others to drop off medication. Such arrangements had been made during lockdown, with additional support offered by family, friends, and neighbours.

‘I’ve had online shopping every week since lockdown and I haven’t been to any shop. Prescriptions were delivered and anything I wanted, my daughter would fetch.’ p18, female, aged 80-84

In this study, we sought the views of older adults living in the UK about factors that threatened or protected their mental health and wellbeing during the COVID-19 pandemic. Our study identified understandable emotional responses to the pandemic including fears relating to the virus, the future, and mortality. These are justified in the face of unprecedented circumstances, such as those brought about by COVID-19 [ 28 ]. Overall, older adults mostly described engaging with activities and behaviours that helped to protect their mental health and could explain their improved wellbeing relative to other age-groups. For the most part, participants enjoyed feeling less social pressure and having more time for their hobbies. Similarities in experience were drawn by this group between a slower pace of life germane to retirement and day-to-day realities of the COVID-19 lockdown. As described by older adults in Japan [ 36 ], COVID-19 restrictions introduced comparatively few changes to daily life compared with other groups. Those who experienced greater daily changes and uncertainty, such as parents of young children, working age adults and those affected by financial difficulties, have reported greater levels emotional distress during the pandemic [ 32 ]. Fewer changes and transitions experienced by older adults may therefore explain some of the differences observed in levels of psychological distress.

Congruent with international research [ 25 ], many participants began to self-isolate earlier than guidance required and perhaps consequently, practical arrangements were in place for access to essentials from the outset of lockdown (for instance, food and medication deliveries offered to people aged over 70), resulting in greater sense of coherence of COVID-19 as a potential health threat. Being at home early meant less opportunities for virus exposure, perhaps reducing fear of virus transmission and creating an environment of stable predictability (comprehensibility). Many older adults were offered online shopping slots or received offers of help from friends, family or neighbours for medication collection, meaning access to supplies was not restricted (manageability). And for the most part, older adults in our study made sense of the pandemic with reference to previous major events in their lives, such as war and displacement. Explanations about their behaviours and adherence during this time was described as behaviour “for the greater good” for the rest of society (meaningfulness).

Factors that threatened mental health and wellbeing during COVID-19

Given early evidence publicised on mortality risk for older adults [ 41 ], it is unsurprising participants frequently discussed concerns about their end-of-life. Studies have shown an association between social isolation and reduced physical performance, [ 31 ] causing concern among some participants in our study, with many taking extra steps to preserve their activity levels. While this may have provided positive health benefits in the short term, of most concern is the fear many participants described in leaving the house to access routine or preventative health care, which may have longer-term implications for public health services. Aligned with international research [ 24 ], participants in our study also worried about the impact of COVID-19 on the world and spoke of the impact this had for their wellbeing on a daily basis. Feelings of grief and loss were frequently reported and will likely be felt across many societies in response to the pandemic.

Factors that protected mental health and wellbeing during COVID-19

Quantitative data collected during the first UK lockdown suggests that those with restricted finances and access to basic needs experienced higher levels of adversity during the first wave of the pandemic [ 40 ]. Many participants in our study reported having access to basic supplies (via online shopping slots and medication deliveries) and high levels of perceived social support, which may have helped to create a buffer against stress and uncertainty. National averages showed infrequent experiences of loneliness among older adults during the pandemic [ 26 ], which may be explained by our finding that participants engaged frequently in online methods of interaction, spent time with pets, and/or had regular remote “check-ins” with friends and family to mitigate against loneliness. As such, the heightened concern about loneliness in this age group early on in the pandemic may have led older adults and those around them to proactively take steps that helped prevent these experiences in many individuals. Indeed, many participants reported enhanced feelings of connectedness with social contacts throughout the lockdown, which can prevent isolation and protect against emotional distress [ 34 ]. However, a small number of participants did not feel connected, particularly those who had been separated from their family because of the pandemic, highlighting the difficulties experienced when such support was not available.

Implications

This study highlights a number of important implications. First, the potential threats to wellbeing amongst older adults require further consideration as they have implications for the immediate future and for future pandemics. In trying to remove barriers to healthcare access, supporting older adults in engaging with telecare may be a helpful alternative for some health concerns. However, in our CSS work involving people with mental health conditions in the UK, we found service users felt this was an unhelpful substitute [ 8 , 9 ]. Future research must address indirect health consequences of the pandemic resultant of delayed or diminished access to healthcare during the lockdown. Second, as discussed elsewhere [ 18 ], interventions to mitigate the impact of prolonged isolation on experiences of grief are warranted. Grief can prompt search for meaning and seeking out others with similar experiences. Clinicians play a role in supporting people in processing their grief associated with COVID-19, but spaces online and within groups may also facilitate healing from loss experienced during the pandemic [ 18 ]. Schemes such as social prescribing could be deployed to support older adults psychosocially, and may provide additional support in the aftermath of COVID-19 [ 33 ]. Finally, it is evident that forward-planning by families and communities to address initial concerns about older adults during the pandemic played an important role in supporting their coping and buffering against loneliness, isolation, and uncertainty. For future pandemics, such a response is again encouraged. In particular, interventions that bolster feelings of certainty and connectedness may serve as helpful targets for those experiencing pandemic-related distress.

Strengths and limitations

A strength of this research is that data were collected from participants via purposive recruitment throughout the first UK lockdown and as restrictions began to ease before the second wave. However, findings must be interpreted cautiously. Our participants were generally healthy, with well-established social networks, living in the community, and predominantly without solo caregiving responsibilities. Therefore, their experiences are not likely to be representative of those living with serious health concerns, who may be more likely to have experienced distress during the pandemic [ 27 ]. We conducted interviews via video call or telephone, which meant being able to capture experiences safely amid restrictions, but also means that those without access to the internet or telephone would not have had equitable access to participate and may have faced additional challenges. We also did not collect data on, or sample based on socioeconomic status or previous COVID-19 infection. To our knowledge, no participant had experienced a confirmed diagnosis. Future studies are needed to ascertain how older adults who experienced COVID-19 were impacted psychologically [ 26 ].

Conclusions

Contrary to early concerns at the start of the pandemic, the mental health of older adults fared well compared with other age groups, and this study adds to the literature on this topic by providing evidence as to why these results may have been found. Overall, many participants described their experience of lockdown as a time for reduced social pressures and increased opportunities for personal growth. However, this group experienced challenges, particularly among those who were concerned about staying well, advancing frailty, or hospitalisation risk. This research therefore highlights the importance of nuance when considering the relative better experiences of older adults. It also provides valuable insight into factors that protected wellbeing of older adults during the COVID-19 pandemic, which may be utilised by policy makers to support at-risk groups who have experienced psychological hardship during the crisis, including timely access to essential supplies, communicating offers of help to improve perceived support, and providing structure and routine in times of uncertainty.

Availability of data and materials

The datasets generated and analysed during the current study are not publicly available and are not available from the corresponding author on request due to reasons concerning participant privacy and confidentiality.

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Acknowledgements

The researchers are grateful for the support of AgeUK, the Alzheimer’s Society and Healthwise Wales during recruitment. Many thanks to Anna Roberts, Louise Baxter Sara Esser and Rana Conway for their help with conducting interviews. Thank you to the COVID-19 Social Study Team (Tom May, Katey Warren, Joanna Dawes, and Henry Aughterson) who provided feedback on the themes and subthemes. We wish to thank the anonymous reviewers for their constructive suggestions that helped us to refine this manuscript.

This work was supported by the Nuffield Foundation [WEL/FR-000022583], but the views expressed are those of the authors and not necessarily the Foundation. The study was also supported by the MARCH Mental Health Network funded by the Cross-Disciplinary Mental Health Network Plus initiative supported by UK Research and Innovation [ES/S002588/1], and by the Wellcome Trust [221400/Z/20/Z]. DF was funded by the Wellcome Trust [205407/Z/16/Z].

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DF and AB were involved with study design. AM collected study data and led the analysis and interpretation of study findings, with support from AB. AM wrote the first paper draft. DF and AB provided critical revisions. All authors have read and approve the final version of the manuscript.

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The University College London Ethics Committee reviewed and approved this study (Project ID: 14895/005). After receipt of a Participant Information Sheet and opportunity to ask questions, all participants then provided written informed consent to participate. We confirm that all methods were carried out in accordance with relevant guidelines and regulations under ethics approval, including participants’ informed consent to participate.

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Interview topic guide: Adult groups.

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McKinlay, A.R., Fancourt, D. & Burton, A. A qualitative study about the mental health and wellbeing of older adults in the UK during the COVID-19 pandemic. BMC Geriatr 21 , 439 (2021). https://doi.org/10.1186/s12877-021-02367-8

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Responsible coordination of municipal health and care services for individuals with serious mental illness: a participatory qualitative study with service users and professionals

• Jorunn Nærland Skjærpe 1 ,
• Tatiana Aleksandrovna Iakovleva 2 &
• Marianne Storm 1 , 3 , 4  

BMC Health Services Research volume  24 , Article number:  633 ( 2024 ) Cite this article

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Care coordination is crucial to ensure the health of individuals with serious mental illness. The aim of this study was to describe and analyze an inclusive innovation process for coordinating municipal health and care services for individuals with serious mental illness.

We conducted café dialogues with professionals and service users with serious mental illness. The café dialogues engaged participants in conversation and knowledge exchange about care coordination, adressing topics of efficiency, challenges, and improvement. We used a responsible innovation framework to analyze the innovation process.

Responsible coordination requires promoting service users’ health and ensuring communication and mutual awareness between professionals. Individual-level factors supporting responsible coordination included service users knowing their assigned professionals, personalized healthcare services, and access to meaningful activities. Provider-level factors included effective coordination routines, communication, information exchange, and professional familiarity. Results reflect professionals’ and service users’ perspectives on efficient care coordination, existing challenges, and measures to improve care coordination.

Café dialogues are an inclusive, participatory method that can produce insights into the responsible coordination of municipal health and care services for individuals with serious mental illness. The responsible innovation framework is helpful in identifying care coordination challenges and measures for responsible coordination.

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Approximately one in eight individuals worldwide have a mental illness [ 1 ], with depressive disorders and anxiety disorders the most prevalent types [ 1 , 2 ]. Many individuals with serious mental illness (SMI) require coordinated care to ensure and improve their health [ 1 , 3 , 4 ]. We use the term SMI to refer to schizophrenia, schizoaffective disorder, psychotic disorders, major depressive disorders, and bipolar disorders [ 5 ]. In Norway, approximately 1-3.5% of the population meets the criteria for lifetime SMI [ 2 ].

Care coordination is defined as “the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of healthcare services” [ 6 , p. 6]. Such coordination across services is essential to providing seamless healthcare [ 7 ]. Efficient care coordination relies on stakeholders sharing a common understanding and harnessing their skills, perspectives, experiences, and knowledge to address the needs of service users [ 8 ].

McDonald et al. [ 6 ] developed a framework of measures they deem essential for coordinated care, which has been applied in numerous studies on mental healthcare coordination [ 3 , 9 , 10 ]. The measures can be grouped into individual, provider, and system levels of care [ 6 , 9 , 11 , 12 ]. At the individual level, professionals tailor service delivery to meet service users’ needs [ 6 ]. Care coordination involves assessing individuals’ healthcare needs, resources, and goals, providing personalized services, supporting self-care, and encouraging health-promoting activities in the community [ 6 ]. At the provider level, care coordination involves establishing accountability, negotiating responsibility for service users’ care, allocating tasks and responsibilities, organizing patient transitions between services, and exchanging information among professionals and service users [ 6 ]. Coordination routines, communication platforms, and cooperative relationships are also important at this level [ 8 , 13 , 14 ]. Care coordination at the system level focuses on aligning healthcare and community resources with the population’s needs [ 6 ], health policy goals, economic factors, legislation, and regulations influencing professional action and decision-making [ 14 ].

Several challenges affect mental healthcare coordination [ 4 ]. These include a lack of access to services, issues with information exchange, and limited service user involvement in decision-making [ 4 ]. The latter is due to an asymmetrical power balance between professionals and service users and perceptions that individuals with SMI lack the capacity to be involved in decision-making due to their symptoms [ 15 ]. Moreover, professionals can at times act unilaterally in service users’ best interests or struggle to integrate their expertise with service user insights, making service users feel unheard or defined by diagnostic labels [ 15 ]. Efficient care coordination can also be hindered by professionals’ multiple simultaneous tasks, uncertainty regarding task prioritization, prioritizing treatment over prevention, and a deficit of expertise [ 16 ]. Knowledge differences, conflicts, and difficulties with perspective-taking are additional challenges [ 17 ]. Addressing these issues requires a more symmetrical power balance and ensuring equal influence of professionals from different services [ 17 , 18 ] and service users [ 15 , 17 ].

Improved care coordination is a stated health policy goal in Norway and internationally [ 19 , 20 , 21 ]. One way to achieve this goal is through responsible innovation processes that include stakeholders [ 22 ]. We define responsible innovation as “taking care of the future through collective stewardship of science and innovation in the present” [ 23 , p. 1570]. Stilgoe et al. [ 23 ] present a framework for responsible innovation with four integrated dimensions: inclusion, anticipation, reflexivity, and responsiveness. Inclusion refers to encouraging different perspectives, anchoring decisions, and promoting reflective innovation processes. Inclusion can occur through dialogues and by applying stakeholders’ ideas and knowledge. Anticipation is about assessing what is known, what is likely to occur, what one intends to achieve, how to address relevant issues, and discovering additional opportunities for innovation. Reflexivity integrates stakeholder perspectives about expectations, challenges, and other issues. Responsiveness refers to an open and flexible innovation process in which participants respect and adapt to each other’s perspectives and knowledge. Suitable responses may involve measures that address existing issues and potential future challenges.

This study builds upon literature demonstrating that responsible innovation and the inclusion of diverse stakeholders can effectively improve healthcare services [ 22 , 24 , 25 , 26 , 27 ]. We include professionals and service users with SMI in café dialogues, a participatory research method [ 28 , 29 , 30 , 31 , 32 , 33 ], to identify care coordination challenges, address shared coordination responsibilities, and develop improvement measures [ 34 , 35 , 36 ]. In health and social science, such participatory research methods have successfully captured varied perspectives and found sustainable solutions to challenges [ 31 , 37 , 38 , 39 , 40 , 41 , 42 ]. Service users have valuable knowledge based on their experiences, can offer insights into their needs and challenges, and can suggest potential improvement measures [ 24 , 43 ]. Involving professionals in café dialogues can enhance their understanding of service users’ perspectives and improve interactions between service users and healthcare services [ 44 ]. The aim of this study is to describe and analyze an inclusive innovation process for coordinating municipal health and care services for individuals with SMI.

Study setting: the Norwegian healthcare system

The Norwegian healthcare system consists of municipal health and care services and specialist health services. Municipalities are responsible for delivering primary healthcare services outside of hospital facilities. The municipal health and care services focus on disease prevention, health promotion, treatment, care, and assistance with daily life functions [ 45 ]. Municipal health and care services for people with SMI encompass general practitioners (GPs), emergency rooms, inpatient acute care, institutions, home-based healthcare, and supported housing with round-the-clock healthcare [ 45 ]. GPs serve as gatekeepers and coordinate referrals to municipal health and care services and specialist health services as per service users’ needs [ 45 ].

The study was conducted in municipal health and care services for individuals with SMI in a rural Norwegian municipality with nearly 20,000 inhabitants. Individuals with SMI frequently experience persistent and severe symptoms of mental illness [ 4 , 46 , 47 ]. They often have extensive physical healthcare needs and a higher mortality rate than the general population [ 2 , 48 , 49 , 50 , 51 ]. Their life expectancy is up to 30 years shorter, mainly because of physical health issues [ 48 , 49 , 50 , 52 ].

The severity of each individual’s mental health issues is based on their symptoms, challenges, and impact on social and daily functioning [ 53 ]. Severity determines the primary responsibility for care, services provided, level of care coordination required, and involvement of specialist health services [ 53 ]. If municipalities lack sufficient competence to meet service users’ needs, responsibility falls to specialist health services which, for individuals with SMI, encompass inpatient and outpatient treatment and care offered by psychiatric hospitals and community mental health centers [ 54 ]. Individuals with SMI often receive municipal and specialist health services [ 53 ].

Study design, recruitment, and participants

For this study, we employed a qualitative participatory design [ 55 ] to describe and analyze an inclusive innovation process for coordinating municipal health and care services for individuals with SMI. Café dialogues were used to collect data [ 28 , 29 , 30 , 31 , 32 , 33 ]. Café dialogues are well suited to explore topics and obtain knowledge through varied participant perspectives in a relatively short period [ 28 , 29 , 30 , 31 , 32 , 33 ]. Café dialogues were considered well suited for several reasons, including their potential for obtaining qualitative data, broadening the reference sample size, exploring topics, and enhancing the diversity of perspectives on the given topic [ 31 , 32 , 33 ]. Additionally, they provide an arena for participants to share their reflections on lived experiences and develop new ideas [ 28 , 29 , 30 , 31 , 32 , 33 ]. This inclusive approach ensures that the participants’ voices and perspectives are included in the innovation and research process [ 23 , 28 , 29 , 30 ].

We used purposive sampling [ 55 ] to recruit professionals and service users who were knowledgeable about care coordination and had experience with mental healthcare services. Recruiting a diverse range of professionals and service users aligns with the inclusion strategy of responsible innovation [ 23 ]. Our inclusion criteria for professionals were that they were employed in a municipal health and care service and were involved in care coordination and service delivery for individuals with SMI. For service users, inclusion criteria were that individuals currently or previously had a diagnosis of SMI and had received two or more municipal health and care services.

We recruited professionals through municipal health and care service leaders who were contacted by JNS via e-mail with information about the study. Service leaders then provided employees with this information and selected employees to participate based on willingness and interest. Service users were recruited through municipal health and care employees who were given information about the study by JNS via e-mail. These employees provided eligible participants with information about the study and the time and location of the café dialogue. Thirty professionals and seven service users were recruited for three café dialogues. Table  1 presents participants’ characteristics.

Café dialogues

JNS and MS conducted three café dialogues, two for professionals and one for service users, in May and June 2021. Café dialogues were inspired by the dialogue seminar method described by Storm [ 28 , 29 , 30 ] and the World Café method [ 31 , 32 , 33 ], which are participatory methods for engaging participants in brainstorming, conversation, and knowledge exchange [ 28 , 29 , 30 , 31 , 32 , 33 ]. Both methods, emphasizing diverse perspectives and mutual learning among participants, offer insights for scientific inquiries and changes and promote inclusivity [ 28 , 29 , 30 , 31 , 32 , 33 ]. These methods facilitate knowledge exchanges and constructive dialogue by encouraging exploration and discussion of important questions [ 28 , 29 , 30 , 31 , 32 , 33 ]. They are adaptable to various contexts and purposes, with event invitations, designs, and questions tailored to specific circumstances [ 28 , 29 , 30 , 31 , 32 , 33 ]. Brown & Isaacs [ 32 ] outline seven design principles for the World Café, including setting the context, creating a welcoming environment, exploring meaningful questions, encouraging contributions from all participants, connecting diverse perspectives, listening collectively for insights, and sharing discoveries as a group.

The café dialogues took place in meeting rooms provided by the municipality. These rooms represented a neutral space where participants could feel free to engage with each other [ 32 ]. Each café dialogue lasted for two hours with a break halfway. We started each café dialogue by welcoming participants, introducing ourselves, and presenting the agenda for the day. We gave a 30-minute teaching session on care coordination to establish a shared understanding of the concept [ 25 , 26 ], using PowerPoint slides to help explain care coordination [ 6 ], relevant health policy [ 19 ], and literature [ 56 , 57 ] that highlighted the importance of care coordination and the complexities of ensuring and improving the health of individuals with mental illness. Following this, we facilitated brainstorming and knowledge exchange conversations where participants articulated their perspectives on the topics of efficient care coordination, coordination challenges, and measures to improve care coordination.

Data collection

JNS led the café dialogues and took notes on a whiteboard throughout the sessions. MS took more detailed written notes to document participants’ ideas and knowledge. When necessary, we adjusted the dialogue to elicit participants’ perspectives on our topics of interest [ 23 ]. An important aspect was ensuring active participation and including each person’s perspectives in the innovation process [ 23 ]. All notes were subsequently synthesized into 13 pages of written text, constituting the qualitative empirical data material [ 55 ]. Table  2 illustrates the topics and activities of the café dialogues.

Data analysis

We conducted inductive and deductive thematic analyses [ 58 , 59 ]. For the inductive aspect, we analyzed the written notes from the café dialogues, focusing on participants’ perspectives on efficient care coordination, challenges, and improvement measures. The inductive analysis consisted of six stages: (1) reading through the material several times to become acquainted with it (2), coding meaning units relevant to the study aim (3), identifying themes and assigning meaning units to these themes (4), conducting a critical review of each theme to ensure that meaning units and themes comprehensively represented the data (5), labeling themes, and (6) summarizing into two themes and five sub-themes. Table  3 gives examples of the inductive thematic analysis.

For the deductive aspect, we analyzed the café dialogue innovation process by connecting themes and sub-themes from the inductive analysis to the dimensions of inclusion, anticipation, reflexivity, and responsiveness in Stilgoe et al.‘s [ 23 ] framework for responsible innovation.

Author reflexivity

Our understanding is built on the fact that we already have a relationship with the phenomena of coordination of healthcare services, and we can better understand existing concepts by relating reflexively to them [ 60 ]. In this study, reflexivity was embraced through collaborative efforts among the three authors in the data analysis [ 55 , 61 ]. Each author, with distinct educational backgrounds and professional experience, brought different perspectives to the analysis, stimulating varied interpretations during the theme development process. We considered alternative interpretations before reaching a consensus on results that aligned with the study’s aim. Consequently, themes were not influenced solely by the preunderstanding of a single researcher, thereby enhancing the trustworthiness of the results [ 62 ].

Ethical considerations

The study was approved through Sikt– the Norwegian Agency for Shared Services in Education and Research (formerly known as the Norwegian Centre for Research Data, or NSD) (project No. 132714). Sikt ensured that the research project adhered to ethical guidelines and regulations and approved information security and privacy services as part of the Norwegian Directorate for Higher Education and Skills (HK-dir). The study adhered to the principles of the Helsinki Declaration. All participants took part voluntarily and were provided with information regarding confidentiality. They were informed that participation was voluntary and that they retained the right to withdraw from the study without consequences. Written informed consent was obtained from all participants before the café dialogues.

The thematic analysis resulted in two themes and five sub-themes that reflected responsible coordination at individual and provider levels, participants’ anticipation of efficient care coordination, reflexivity to care coordination challenges, and responsiveness to improvement measures [ 23 ].

At the individual level, anticipation reflected a desire that services be personalized, with relationships built on trust and security between professionals and service users. Reflexivity encompassed care coordination challenges, which arose when service users refused healthcare or did not recognize their healthcare needs. Suggested improvement measures included activity centers, flexible healthcare, and professionals taking time to get to know service users.

At the provider level, anticipation involved clear responsibilities and tasks, coordination routines, and communication. Professionals described care coordination challenges related to a lack of routines, communication, unfamiliarity with one another, absence of shared health record-keeping systems, disagreements regarding service users’ healthcare, and not completing expected tasks. Improvement measures were responses related to information exchange, meeting points for communication, and a shared health record-keeping system across services.

Themes and sub-themes are described in more detail below. Table  4 illustrates themes, sub-themes, and the café dialogue innovation process.

Theme 1: Ensuring and promoting health - Responsible coordination at the individual level

Sub-theme 1: to be met and followed up with personalized healthcare.

Service users agreed that efficient care coordination required personalized healthcare with user involvement at every stage of their health journey. It can be challenging for service users to receive healthcare, even when they know their needs. When professionals approach service users in a way that makes them feel respected, seen, and heard, cooperation is easier. A service user elaborated on this:

It is crucial that professionals do not adopt a top-down attitude and that they communicate clearly without using complicated terminology. We feel stupid and hesitant to speak up when we do not understand what the professionals are saying.

Service users appreciated when healthcare was flexible and provided in environments where they felt safe. Service users suggested measures such as follow-ups at professionals’ offices, at home, or outdoors during activities that offered new experiences. They also mentioned video calls or double appointments with GPs. Using humor, even in serious situations, was seen as beneficial.

Several service users found communicating with professionals in writing easier than by phone. Both service users and professionals shared positive experiences using text messages and wanted to continue such measures. The ability to quickly and easily get in touch with professionals when needed was important for service users, and made easier through having direct numbers for their GP and other familiar professionals. Still, while these personalized and flexible measures were practical, service users emphasized that they were responsible for their health and that improved health required major effort on their part. One of them stated:

We must take control of our own lives. It can take a long time to realize that something needs to change. Waiting for someone else to fix me does not work. That just keeps us stuck in the same old mess. Having services available does not help if we are not willing to change.

Sub-theme 2: A balance between providing healthcare and allowing service users to take responsibility for their own lives

Professionals believed efficient care coordination involved personalized services adapted to service users’ goals, resources, preferences, and needs. One professional stated:

Some service users may have needs beyond standardized services. In such cases, we must be curious, stretch ourselves, think outside the box, prioritize the most critical aspects, try new measures, and find solutions together.

Several professionals noted that some service users needed assistance in managing their health. In such situations, efficient care coordination meant liaising with necessary services and assisting service users with daily needs. Professionals acknowledged that service users were responsible for their own lives but did not want to place too much pressure on them. One professional said:

It is a delicate balance to know how much help to provide while not assuming responsibilities that service users can handle themselves.

Professionals faced challenges in meeting service users’ needs if they refused healthcare, only accepted it from specific professionals, or had a different perspective on their needs compared to professional recommendations. These needs were often related to mental health but also to physical health. In such situations, it was essential for professionals to explain what was being refused.

Sub-theme 3: To know professionals and have access to meaningful activities

For service users, familiarity with professionals was crucial for efficient care coordination. Relationships built on trust and security, and professionals who took the time to get to know them made it easier to receive healthcare. Measures such as weekend getaways, holiday trips, and other meaningful activities were some suggested ways to get acquainted and build relationships. Engagement in meaningful activities promoted health, shifted focus away from illness, and placed a greater emphasis on service users’ strengths and resources. Conversely, a lack of meaningful activities posed coordination challenges.

Service users praised an activity center, often recommended by professionals, that helped establish contact. The activity center provided daily structure, social interaction, friendships, and belonging, helping service users discover they were not alone in their struggles and could support each other. In addition, they could receive support from peers and professionals, despite some instances of gossip and rumors among center users. Still, they were conscious of promoting each other positively and apologized if they said something they regretted. The center organized weekly group outings, which service users described as health-promoting and involving physical activity and fresh air, which, in turn, led to improved sleep and reduced symptoms of depression. Overall, attending the activity center had resulted in several service users needing less healthcare. One service user said:

I went to my GP every three months before– now I only go every six months.

While service users knew that such activities benefited them, actually engaging in such endeavors could still prove difficult. Nevertheless, doing so could instill a sense of accomplishment. One person spoke about challenging oneself:

It is important to stand up for oneself, take responsibility, and dare to set limits. To have the courage to say both yes and no. If you say yes to something that feels daunting, it is crucial to be able to step back when needed. Trying things that can be enjoyable and beneficial for oneself is essential.

Theme 2: Communication and knowledge of each other - Responsible coordination at the provider level

Sub-theme 4: coordination routines and information exchange.

Professionals reported that individuals with SMI often have complex needs and require multiple services. Determining priorities for mental or physical healthcare needs and identifying suitable services could be challenging. An absence of coordination routines, especially between mental and physical healthcare services, and coordination efforts being affected by personal and time constraints made it difficult for professionals to address complex needs. There were also challenges when professionals disagreed about service users’ healthcare and when they could not fulfill their expected tasks. Therefore, clarifying care responsibilities for each involved service was crucial.

Communication and regular information exchange were seen as elements of efficient care coordination. Information exchange often occurs through an electronic messaging system. However, several professionals have experienced issues with this system, such as messages not being sent as intended. Also, written information sometimes can fail to convey nuances present in face-to-face communication, leading to misinterpretation. In such cases, professionals needed to consult colleagues or messengers to ensure they had correctly understood the information. One professional said:

The information we receive and when it arrives can be quite random. Messages often get lost, or service users must provide the information themselves. Therefore, we spend extra time making calls and searching for necessary information.

Service users wanted access to updated health information and professionals to exchange relevant information. This exchange was contingent upon service users’ consent. They also wanted to simplify the consent process. Professionals discussed service users who do not consent to information exchange or withdraw their consent, citing this as a challenge hampering healthcare. They were committed to explaining to service users the importance of information exchange and the consequences of withholding consent.

For professionals, efficient care coordination meant providing service users with regularly updated information so they could be involved in adapting services to their needs. Service users valued professionals providing comprehensive information about available services and the consequences of choosing or not choosing them, as they could easily forget this information. Therefore, detailed written and oral information and access to quality-assured information about health, illness, and healthcare options could be helpful. Service users often had to deal with unfamiliar professionals who lacked updated health information about them. One explained:

Interacting with many professionals can be challenging when you feel emotionally unstable. It is exhausting to keep track of things and repeatedly explain your history when experiencing severe symptoms, such as telling professionals in the municipality what hospital doctors have said.

Consequently, service users wanted involved professionals to have access to their health records. However, care coordination challenges arose from an absence of up-to-date health information, primarily attributed to the lack of shared health record-keeping across services. Professionals reported positive experiences creating plans that outlined allocated services and described existing measures for when service users experienced severe symptoms. These plans could be used independently of a shared health record system.

Sub-theme 5: Being familiar with cooperating professionals

Professionals stated it was important that service users experienced efficient care coordination. They noted that care coordination worked best when involved professionals were familiar with each other, with challenges more likely to arise if they were not. Service users wished for involved professionals to cooperate closely and be familiar with each other’s roles. One service user said:

Professionals must clearly define their responsibilities so it is evident who does what. For example, we need to know who is responsible for our medications and who accompanies us to social services.

Professionals highlighted regular care coordination meetings in the municipality and with specialist health services as crucial measures for efficient care coordination. These meetings could be used for professionals to get to know each other, allocate responsibilities and tasks, develop and revise coordination routines, ensure information exchange, and verify information was understood. Meetings between professionals from mental health home care and home nursing were particularly relevant for coordinating mental and physical healthcare. Meeting locations could vary so that professionals would become acquainted with each other’s workplaces. One professional said:

Having common meeting points - meeting in person and talking together - makes it easier to initiate contact and know whom to reach out to electronically or by phone on future occasions.

The municipality has tried digital and hybrid meetings. Several professionals found these formats useful and reported receiving positive feedback from service users. Such meetings save time as participants can attend only the parts relevant to them. Digital meetings also eliminate the need for travel.

In this study, we conducted café dialogues with professionals and service users with the aim of outlining an inclusive innovation process for the responsible coordination of municipal health and care services for individuals with SMI. Our study highlights how including professionals and service users can help improve responsible care coordination through clarifying anticipation, encouraging reflexivity, and ensuring responsiveness [ 23 ]. Furthermore, we discuss our results in light of the dimensions in Stilgoe et al.‘s [ 23 ] framework for responsible innovation and previous research.

According to Stilgoe et al.‘s [ 23 ] framework, clarifying participant anticipation is central to responsible innovation. Our findings show that at the individual level, anticipation for efficient care coordination includes promoting health through personalized and flexible healthcare services and service users taking responsibility for their own lives. Balancing these anticipations can, however, prove challenging for professionals. Service user involvement in care coordination can promote health and reduce illness symptoms [ 63 ], but research indicates that some individuals with SMI prefer professionals to make care coordination decisions on their behalf [ 10 ]. Continuous assessment of service users’ capacities is therefore crucial to ensure any responsibilities they are given are appropriate [ 64 ].

Reflexivity to challenges, their causes, and how they might impact participant anticipation are essential in Stilgoe et al.‘s framework [ 23 ]. In our study, consideration of reflexivity revealed that professionals at times faced coordination challenges in meeting service users’ health needs when users did not accept or recognize these needs. Research shows that such challenges are common in care coordination [ 3 , 10 , 65 ].

At the provider level of responsible coordination, Stilgoe et al.‘s [ 23 ] anticipation dimension involves efficient communication and information exchange among professionals. These are essential for successful care coordination [ 66 ] and meeting service users’ needs [ 14 , 63 ]. Our study revealed that electronic messages were a preferred form of communication. Electronic communication can enhance efficient care coordination by providing quick access to up-to-date information [ 67 ]. However, participants reported communication challenges at the provider level, as problems with electronic messages resulted in professionals missing vital information and having to spend time gathering it. Further, electronic messages may not always suffice as essential information and details can be omitted or misunderstood [ 10 , 67 ].

Considering reflexivity at the provider level, we identified challenges whereby some service users declined to consent to information exchange among professionals, likely due to privacy concerns [ 67 ]. A lack of consent can limit shared health record-keeping, proving a challenge for coordination and weakening the quality of electronic information [ 66 ]. We found that service users found it burdensome to repeat their history when interacting with different professionals, an observation supported by prior research [ 68 ]. Shared health record-keeping can be particularly valuable if service users struggle to express themselves [ 67 ].

In our study, Stilgoe et al.‘s [ 23 ] responsiveness dimension represented measures to improve care coordination. Participants described measures for responsible coordination that focused on flexible and personalized services, such as simplifying contact with professionals, providing healthcare in a safe environment, and professionals getting to know service users. Customized services are vital in care coordination [ 14 ] and essential to meeting service users’ mental and physical health needs [ 10 ].

Our results suggest that improvement measures at the individual level should allow service users to communicate their needs to professionals in writing. Text messages could be used in personalized healthcare to quickly convey health information, increasing service user involvement and supporting self-care and recovery [ 69 ]. Our results highlight the use of activity centers as an improvement measure as these promote service users’ health and reduce the need for healthcare. Access to health-promoting services can help to engage individuals through shared interests and experiences, which is particularly important when service users have complex needs, as other needs may take precedence over health promotion [ 70 ].

Professionals in our study stated that lack of care coordination and unclear responsibilities made it challenging to determine the most suitable services for service users with complex needs. They responded to these challenges by developing coordination routines. This aligns with the literature indicating that efficient care coordination at the provider level depends on measures such as routines and transparent allocation of responsibilities and tasks [ 14 , 66 ]. Our results show that care plans that outline allocated services and measures accessible to professionals are important for efficient care coordination, supporting previous findings [ 66 ].

Service users in our study appreciated when involved professionals knew each other and highlighted the importance of having familiar professionals present. Considering the issue of responsiveness, participants reported that regular meetings allowed professionals to get to know each other, establish routines, communicate, and distribute tasks and responsibilities. Meetings where participants work toward common goals are essential for efficient coordination [ 3 , 9 , 10 , 63 ] and complement the care coordination process [ 8 ]. Our results show that digital and hybrid meetings increase meeting participation, with video meetings saving time and improving accessibility [ 71 ]. Research indicates that service user participation in care coordination meetings ensures that services align with the users’ wishes, needs, resources, and goals [ 63 ].

Strengths and limitations

A key strength of this study was the inclusion of service users and professionals from multiple municipal health and care services. The café dialogue method encouraged the integration of these participants’ perspectives into the innovation process [ 23 , 44 ]. During the café dialogues, participants discussed various aspects of care coordination. They were able to relate the teaching sessions to their own experiences. Additionally, they highlighted their own examples of coordinated care. Participants were willing to share their personal experiences, and the dialogues enabled them to build upon each other’s responses [ 31 , 55 , 72 ], fostering inclusiveness [ 23 ] and relevance to practice. Several participants offered valuable ideas and knowledge about how to improve care coordination [ 23 , 24 ].

However, some participants showed less engagement in conversations, and some required direct questions before sharing their perspectives. This may have been due to varying attitudes toward innovation, with some participants more passive and conservative and others more open to new ideas [ 25 ]. The teaching session at the café dialogues could have influenced participants’ conversations. It is also possible that relevant voices were not represented in our recruitment approach. The café dialogue for service users was conducted in a meeting room with access to professionals the users knew well and could contact if needed. We note that as participants were encouraged not to share experiences of a sensitive and private nature, some service user participants may have been reluctant to share opinions or negative experiences due to privacy concerns.

Looking back, we realize that audio recording of the café dialogues could have captured the participants’ viewpoints more thoroughly and preserved their ideas and knowledge. Furthermore, employing an interview guide covering a wider range of topics than those discussed in the dialogues could have enhanced our understanding of care coordination.

Due to constraints imposed in response to the COVID-19 pandemic, most participants in the first café dialogue were employed in mental health home care. Another potential limitation is that service users were a minority of our participants. Due to pandemic-related restrictions, we could not include more service users, and professionals and service users were not allowed to participate in the same café dialogue. In future research, we recommend including more service users to balance the number of service users and professionals. We also suggest that both professionals and service users participate in the same café dialogues. This could generate varied dynamics and potentially result in alternative suggestions for improvements. Finally, participants’ suggestions were not put into practice, so their impact on the improvement and coordination of services remains unknown.

This study shows that café dialogues that include professionals and service users are an inclusive, participatory method that can inform the responsible coordination of municipal health and care services for individuals with SMI. Our results indicate that responsible coordination at the individual level entails ensuring and promoting service users’ health, while at the provider level, communication and knowledge of each other are central. Findings demonstrate the relevance of the responsible innovation framework in identifying care coordination challenges and its utility in developing measures for responsible coordination of municipal health and care services for those with SMI. These results may be transferable to other contexts.

Data availability

Data are available to appropriate academic parties upon reasonable request to the corresponding author.

Abbreviations

General practitioner

Norwegian Directorate for Higher Education and Skills

Data Protection Official for Research at the Norwegian Centre for Research Data

Serious mental illness

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Skjærpe, J.N., Iakovleva, T.A. & Storm, M. Responsible coordination of municipal health and care services for individuals with serious mental illness: a participatory qualitative study with service users and professionals. BMC Health Serv Res 24 , 633 (2024). https://doi.org/10.1186/s12913-024-10999-w

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Emptying state institutions was supposed to help fix mental health care. what happened.

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Nick Johnston worked during the 1960s at a massive psychiatric hospital in Illinois. He remembers one of his first patients telling him that her husband used political connections to have her wrongfully locked away.

Such abuses were part of the complicated and sometimes shameful legacy of state institutions for people with mental illness across the country. And they were part of the reason Johnston — who later led a St. Cloud outpatient mental health center — has long supported the push to develop community-based alternatives to institutions.

But patient advocates say the system for community care — from group psychotherapy to live-in treatment centers — was never fully built in Minnesota or throughout the U.S. It prompted Johnston to ask Curious Minnesota , the Star Tribune's reader-powered reporting project, whether this was partly because state funding wasn't reinvested as Minnesota's institutions closed.

"How much of the money saved," he asked, "was used for the creation and operation of community mental health centers and services?"

The precise answer to that question is tricky because the story of de-institutionalization spanned many decades, so any savings didn't happen all at once. What is clear, though, is that closing institutions didn't free up enough state money to create a fully functional community-based system, said Tony Lourey, a former DFL lawmaker and one-time commissioner of the Minnesota Department of Human Services.

The federal government promised money beginning in the 1960s to create a network of new community mental health centers, but funds got tight even before the support was effectively slashed during the 1980s, said Sue Abderholden, executive director of the patient advocacy group NAMI Minnesota. Critical gaps in non-hospital care remain today, Abderholden said, even though more state and federal funding over the past 25 years has moved the community-based system closer to the goal.

"We are spending a lot more and we are providing a lot more services," she said, "but we are still not meeting the need."

Institutions draw scrutiny

Minnesota established its first public hospital for people with mental illness in St. Peter in 1866. As the population grew, several other hospitals were added , including facilities in Rochester, Fergus Falls, Hastings and Anoka.

The building that housed Fergus Falls State Hospital is still standing, a massive structure spanning a third of a mile. For decades, it was a largely self-sufficient microeconomy, with farm operations that fed the 1,600 to 1,800 patients who lived there, said Chris Schuelke, executive director of the Otter Tail County Historical Society. The patient population peaked at about 2,000 during the Great Depression and shifted over time to include many with developmental disabilities.

"It's immense," Schuelke said of the building.

The years following World War II were controversial for the facilities. The Minneapolis Tribune published a blistering exposé of poor living conditions in 1948. Gov. Luther Youngdahl made a high-profile push for change, including a 1949 media event where he burned straitjackets, leather straps and other devices that had been used to restrain patients at the state hospital in Anoka.

"His goal was to move Minnesota's mental institutions from among the worst in the nation to a model for the future," wrote Susan Foote, a retired University of Minnesota public health professor, in her book "The Crusade for Forgotten Souls."

The push for reforms drove significant improvements, Foote said in an interview. But some didn't endure beyond Youngdahl's time in office.

In 1963, President John F. Kennedy described his vision for a better mental health care system based on care in community facilities, rather than institutions. It built on the successful introduction of the first antipsychotic medications during the mid-1950s, which already were letting many patients with serious mental illness live outside state hospitals.

With passage of the Community Mental Health Act, the federal government started providing $150 million for construction and staffing of 1,500 community mental health centers . Each facility was meant to serve regions with between 75,000 and 200,000 people , providing inpatient and outpatient services, day treatment, emergency care and ongoing consultation for patients. The hope was the entire country would be covered by the mid-1970s.

"The mentally ill ... need no longer be alien to our affections or beyond the help of our communities," Kennedy said after signing the law.

On the streets and in jails

The legislation accelerated de-institutionalization across the country. In Minnesota, state hospitals that once treated more than 10,000 patients with mental illness had roughly 3,000 by 1970.

The community mental health centers were going to be one-stop shops that would provide everything from clinic care to crisis services, Abderholden said. But federal funding cuts meant only half the centers were ever built, she said. Plus, there was an evolving understanding of what services would be needed and how much it would cost, said Dr. Paul Goering, a psychiatrist and former physician executive at Allina Health.

Foote recalled interviewing former staff at Fergus Falls who described watching long-term patients being discharged into the community.

"One of them cried and said: 'We knew these people — we knew them really well. ... And we knew we were sending them to a place that was not going to work for them,'" she said. "On the other hand ... there is a lot of anger toward the institutions as they existed."

Homelessness accelerated in the 1970s, as many former state hospital patients returned to communities and couldn't find support, wrote Dr. Thomas Insel, the former director of the National Institute of Mental Health, in his 2022 book, "Healing: Our Path from Mental Illness to Mental Health." Insel described how jails and prisons over a 30-year period came to became "de facto mental hospitals."

In Minnesota, Hastings State Hospital shut down in 1978. The Rochester facility closed in 1982 while Fergus Falls stopped seeing patients in 2005. A search of documents at the Minnesota Legislative Reference Library did not find a report on what became of the systemwide savings across all state hospital closings. The long wind-down likely made this kind of analysis more difficult. Litigation from patients also drove the closures.

As the state was shutting down these large facilities, Goering noted, some smaller regional facilities opened in their place. A number of these have now closed, further complicating the math around savings and reinvestment.

Access problems endure

Today, patients still can have trouble finding the mental health care they need in Minnesota.

Growing demand for behavioral and mental health care since the pandemic has stressed the limited supply of caregivers — especially for Minnesota kids . Minnesota regulators say that health insurers have violated laws requiring consistency in coverage between mental and physical health care services. And patients confronting any supply and insurance barriers often stop seeking care.

One of the most obvious symptoms of limited access to basic and preventive mental health services is that too many patients in crisis keep landing in emergency rooms , where they can wait days to access one of the few mental health beds in general hospitals.

On the surface, it might look like this problem could be addressed by re-opening state hospitals. But patient advocates say this ignores the fraught history of the institutions, where abuse was abetted by isolating people with mental illness from their communities.

Goering, the psychiatrist, said the goal should instead be to keep working toward community-based care's unrealized promise. He pointed to expanded federal funding in late 2020 for Certified Community Behavioral Health Centers — a relatively new group of clinics that, in some ways, hark back to Kennedy's ideal.

Patients with serious mental illness who live in a supportive environment and are engaged with meaningful work or pursuits during the day, he said, can thrive with access to a full spectrum of mental health services. Those services could include drop-in centers, one-on-one therapy and timely access to medication management.

This care can largely prevent the need for a hospital bed for many patients, Goering said.

"Imagining a better future, instead of pointing fingers at imperfect actions in the past, feels more hopeful to me," Goering said, "and puts an achievable challenge out there for us, collectively."

Johnston, the retired St. Cloud mental health professional who sent this question to Curious Minnesota, sees community care as a much better option than a return to the state hospitals. The story of de-institutionalization has been a long and winding road, he said. But it doesn't make sense to veer backward.

"The institutions were easy to get into," he said, "and hard to get out of."

If you'd like to submit a Curious Minnesota question, fill out the form below:

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What was the most destructive tornado in Minnesota history?

Christopher Snowbeck covers health insurers, including Minnetonka-based UnitedHealth Group, and the business of running hospitals and clinics. 

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As mental health issues plague Asian American communities, some fight silence around issue

As the global emergency surrounding the COVID-19 pandemic ended last year, directors at Self-Help for the Elderly, an agency serving San Francisco’s Asian American community, figured seniors would emerge from their seclusion and return to social activities they once embraced: community lunches, tai chi sessions, walks in the park.

Instead, they found, many continued to stay home, alarmed by continuing reports of anti-Asian violence .

“They don’t dare to go out because of a really deep fear of being attacked,” said Anni Chung, the agency’s president and CEO. “That leads to a lack of physical activity and, eventually, signs of depression.”

Nationwide, pandemic-related isolation, anti-Asian rhetoric and abuse – along with mass shootings that claimed Asian victims in Atlanta and California – have exacerbated the mental health challenges faced by Asian Americans in the last several years. Meanwhile, studies show Asian Americans are least likely to seek mental health services , partly because of the cultural stigma that exists around seeking such help.

“Having these conversations and seeking mental health care are still stigmatized across Asian American communities,” said Nicole Dowd, director of public programs for the Smithsonian’s National Museum of Asian Art in Washington.

That’s one reason the museum has made mental health and wellbeing the theme of its second annual Asian American, Native Hawaiian and Pacific Islander Heritage Month festival, taking place this weekend .

“Focusing on this highlights the importance of dialogue across AANHPI communities and generations,” Dowd said. “Our goal is create a gathering space for dialogue, learning and mindfulness.”

That May is also Mental Health Awareness Month adds relevance, she said.

The festival will feature listening spaces with music, a series of sound bath meditation sessions and conversations with mental health writers and practitioners, offering festivalgoers tools they can use to address mental health in their own lives, she said.

The struggles faced by some segments of the community suggest post-pandemic challenges remain. Asian Americans, Native Hawaiians and Pacific Islanders were among the racial/ethnic groups that experienced the highest increases in suicides from 2021 to 2022, according to the CDC.

Last year in San Francisco, as the pandemic faded and the agency began reopening community centers, it found many seniors were still reluctant to congregate. Instead, centers offered to-go meals, with hundreds of seniors lined up outside for meals they took home and ate alone.

Now, with all centers having since reopened and to-go options discontinued, attendance at those same centers barely hovers around 80 people.

“The fear is still there,” Chung said. “COVID and the anti-Asian attacks did something that impacted their behavior. They have no one to talk to or socialize with, and without that connection they’re going to get frail both physically and mentally.”

Why some Asian Americans avoid seeking mental health care

Community members and advocates say Asian Americans may be reluctant to seek mental healthcare for many reasons, especially given the wide range of experiences and cultural traditions depending on whether their heritage is, for example, Chinese, Japanese, Korean, Filipino, Vietnamese, Hmong or South Asian.

"No experience in the Asian American community is monolithic," Dowd said. "Everyone has their own histories and reasons."

Dowd said some are reluctant to discuss mental health issues out of empathy for what their elders experienced.

“A lot of it comes down to a hesitance to talk about things in the past and the generalized immigrant experience of wanting to move forward,” she said.

Grace Kim, chair of Boston University’s counseling psychology and applied human development department, said many view physical and mental health in tandem, making them less likely to separate out mental health and instead couching it in terms of fatigue or low energy rather than depression or anxiety.

Chung said that for her agency’s Chinese senior clients, translations for the term "mental illness" carry negative connotations.

“The translation in Chinese means 'crazy,'” she said. “No one wants to be, or wants their family members to be, labeled that way, so they want to hide it because it’s such a taboo.”

Furthermore, many refuse to ingest what they see as psyche-altering drugs.

“They hear about the effects of taking them – that they become a different person,” Chung said. “So people won’t take their medications. It’s difficult when providers don’t speak their language or understand their culture.”

Psychology workforce plagued by lack of diversity

The lack of culturally competent mental health providers is one that plagues most communities of color.

“Even in Chinatown, where we have 200,000 Chinese, I don’t think you could easily find a bilingual psychiatrist who practices in the community,” Chung said.

According to a 2020 American Psychological Association report, 84% of the psychology workforce is white, while Asians comprise just 4%.

That means Asian American clients face challenges finding mental health professionals aware of their lived experiences who can skillfully support them. The few therapists who do meet those qualifications often have workloads already stretched by the pandemic, with waitlists not uncommon .

“We know that there are fewer in-language providers available to meet the needs of all minoritized communities, including Asian Americans,” said Anne Saw, an associate professor of psychology at Chicago’s DePaul University.

Earlier this year, the National Museum of Asian Art convened a group of artists, community leaders and health providers to discuss the mental health issues facing the nation’s Asian American communities.

“What we learned is that challenges come from a range of experiences such as intergenerational trauma, questions of identity, discrimination, violence related to the pandemic and the general stresses we face as human beings,” Dowd said. “But there’s also a lack of accessible tools.”

Saw said that if there’s any silver lining to the crisis, it’s that some in the community are becoming more willing to talk openly about mental health.

“There’s still that stigma, but people are more willing to engage in these conversations because they’ve seen firsthand the impact of all these stressors on their families and children,” she said.

Kim agreed.

“Many Asian Americans, especially young adults, are talking about mental health and seeking out supports specifically through Asian American therapists or other therapists of color,” she said. “This knowledge of what they need, and being able to ask for it, is great.”

Finding ways to overcome mental health stigma

In San Francisco, with seniors reluctant to go to mental health clinics, Chung’s agency has found ways to have the clinics come to them. For instance, one city mental health provider Chung knew would visit the agency's community centers, sifting out symptoms of depression through casual conversation and making suggestions to help them address the issue, such as socializing more.

“If you asked our patients to walk into a mental health clinic, there’s no way they would go,” Chung said. “So it was a cultural way of dealing with a difficult and taboo subject, making it more of a normal conversation instead of a therapy session.”

The agency relies on a half-dozen other retired clinicians who occasionally drop in to engage seniors in the same way, Chung said.

Meanwhile, Chung said some social workers now employ terms such as "psychological" or "spiritual health" when speaking with seniors to avoid triggering alarms while asking about telltale signs like loss of sleep, appetite or a desire to see family or friends.

“The seniors would never you outright that they’re depressed or anxious,” she said. “They don’t want to be stigmatized.”

Saw said another way to approach the reluctance among some could be to appeal to the importance of family in Asian American culture, stressing the benefits that mental health care can provide for such relationships. She also pointed to programs that indirectly address mental health through social activities, connecting people around hobbies or tai chi.

“They’re more captivating ways of bringing people out of their house and connecting them with people who can support them,” she said. “Those are the programs that will probably be models for us going forward.”

These 3 Non-Profits Provide Gender-Affirming Mental Health Care To The Transgender Community & Beyond

I n 2024, gender-affirming care for transgender folks is still one of the most heavily spotlighted topics in our society. Most people, specifically those in higher power, tend to ignore, and ban, the needed resources for those who are on their trans journey — including gender-affirming mental health resources.

If you don’t know what gender affirmation means, let me explain. Gender-affirming care is defined as “the social, medical, behavioral and psychological interventions designed to support and affirm an individual’s gender identity”, specifically for those who are questioning their gender identity. For trans folks, gender-affirming care is still an unresolved problem due to physical development, access to hormone therapy, and parental consent. A lack of access to affirming care can lead to gender dysphoria and other mental health issues, such as depression and suicidal ideation. According to the Trevor Project , 56% of LGBTQ young people who wanted mental health care in the past year were not able to get it, and nearly 1 in 3 LGBTQ+ young people said their mental health was poor most of the time or always due to anti-LGBTQ+ policies and legislation.

With many laws across the country prohibiting and banning medical care for transgender youth, it’s important to keep in mind resources that are willing to provide affirming care for trans individuals and their mental health. So, whether you’re a trans person looking for mental health resources, or if you’re cisgender and looking for a cause to support, here are three gender-affirming mental health resources for transgender folks.

The Trans Youth Equality Foundation is a non-profit organization that advocates for transgender, non-binary, and gender non-conforming youth. Their mission is to provide a safe and comforting environment for children and youth. The organization provides many resources for youth, parents, educators, and providers. It also provides a workshop for healthcare professionals on the basis of gender dysphoria and gender affirmation.  

Founded in 2003 by transgender activist Mara Keisling, the National Center for Transgender Equality is a non-profit organization that is dedicated to social justice advocacy for the transgender community. NCTE focuses on debunking discrimination in employment, hate crimes, and health care access. The organization strives to increase affirming efforts for trans individuals and advocates for trans mental health. 

Launched in 2014, Trans Lifeline is a trans-led organization that provides trans people with support and the resources that will guide them to a better future. The organization also offers financial and emotional support to those in crisis, and the Microgrants Program is dedicated to gender-affirming resources such as name-change and other necessities needed for a trans individual’s journey. 

The community of trans people still has a long way to go in receiving the rights that they deserve. Especially for trans youth, it’s important that we listen and cater to the wishes of those who want to live their true selves.

The post These 3 Non-Profits Provide Gender-Affirming Mental Health Care To The Transgender Community & Beyond first appeared on Her Campus .

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Commentary | Advancing mental health care access for Floridians | Opinion

Teachers witness it in the classroom, where it is impacting students’ ability to learn and grow.

Law enforcement officers are encountering individuals in mental health crises on the streets, who often lack access to medications and stable housing.

Hospital emergency rooms are on the front lines, seeing the harsh reality of so many children and adults who need crisis care, which is often a reflection of the care they are not able to access in their communities.

According to Mental Health America, here in Florida, more than 2.9 million adults have experienced a mental illness. Of them, more than half are not receiving treatment.

For many, it’s not that they won’t seek treatment; they cannot access it. Like the rest of the nation, the Sunshine State is experiencing a serious shortage of behavioral health providers. We do not have enough to meet the growing demand for services.

Mental health crises do not only occur during regular office hours, and the closure of massive state institutions decades ago did not mean that the individuals in need of care went away.

Too often, individuals with mental illness have preventable chronic diseases that are not being effectively managed because of a lack of coordinated care. With dignity and compassion, our system of care must meet children and adults where they are with the care they need. To that end, hospitals support these vital services and partner with community organizations to establish and enhance important wrap-around behavioral and social services that are person-centered.

We want children to be happy, healthy, thriving and successful in school. We want adults to be supported with effective services that promote community engagement, well-being and recovery.

The good news is that Florida is doing something about it. In partnership with community organizations and our state leaders, Florida hospitals are working to increase access to services, grow our workforce and support the Floridians who need help the most.

Numerous Florida hospitals provide inpatient psychiatric care and outpatient treatment for mental health and substance use disorder. Many hospitals are supporting an array of community-based behavioral health services to support the full continuum of care.

Gov. Ron DeSantis, First Lady Casey DeSantis and the Florida Legislature have been shining a bright spotlight on the issue of mental health and have been charting a course forward to increase resources to improve Florida’s system of care. Recently, the state increased support for mobile crisis response teams to further deploy trained professionals when people have a mental health crisis. In many instances, these teams de-escalate the situation and avoid a hospital admission.

Another strong signal of the state’s commitment to mental health, included this year in the Legislature’s groundbreaking Live Healthy legislation , is the establishment of state-designated behavioral health teaching hospitals. This initiative demonstrates a long-term commitment to growing our behavioral health workforce. Today, Florida has a ratio of one provider to 550 individuals. Massachusetts has the top ratio in the country for the behavioral workforce, with a ratio of 1 provider to 140.

This past session, the Florida Legislature displayed leadership to streamline processes and support timely access to high-quality treatment. We are incredibly grateful for the state’s leadership and all the behavioral health providers who strive to provide comprehensive person-centered care at the right time and in the right setting with the best outcomes.

As demand for mental health and substance use disorder treatment continues to skyrocket in our state and country, we must continue to drive progress and advance solutions that demonstrate a commitment to human dignity, compassionate and comprehensive care, and a modern system of behavioral health based on the latest standards of care and treatment.

This month marks Mental Health Awareness Month. It’s an opportunity to encourage individuals struggling to seek help. Florida’s hospitals, in partnership with community organizations and leaders in the Florida Legislature, are actively working to ensure those who need behavioral health services can access them.

Greater access to high-quality care — for both the body and the mind — offers Floridians hope for a brighter future.

Mary C. Mayhew is president and CEO of the Florida Hospital Association. 

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• Correctional Health
• Reentry for Formerly Incarcerated
• CDC Recommendations

Public Health Considerations for Correctional Health

• To provide people who are justice system-involved, correctional facility staff, public health professionals, community organizations, and anyone else with an interest in correctional health with resources.
• Review CDC resources, guidelines, and data on correctional health and justice-involved populations

Correctional health is community health

Correctional health encompasses all aspects of health and well-being for adults and juveniles who are justice system*-involved. This starts at the point of arrest, continues at detention or incarceration, and carries through after they return to their community (called "reentry"). Correctional health also includes the health of families and communities of persons who are justice system-involved, as well as the health administrators and staff who work in facilities.

Justice System-Involved‎

Persons who are justice system-involved are more likely to experience risk factors for HIV, viral hepatitis, sexually transmitted infections (STIs), tuberculosis (TB), latent TB infection (LTBI), and traumatic brain injuries (TBI) and concussions . The prevalence of these infections, diseases, and injuries is higher than in the general population. Additionally, a high proportion of people with justice system involvement have a history of unstable housing and mental health and substance use disorders, which increases vulnerability and risk for HIV, viral hepatitis, STIs, tuberculosis/latent tuberculosis infection, and injuries like TBI. This puts many in need of linkage to substance use and mental health treatment, employment, and permanent housing upon release. Justice-involvement also leads to family and community instability and adverse childhood events , with 1 in 28 children having a caregiver who is incarcerated.

Taken together, these multiple health conditions and social determinates of health contribute to the health disparities found in this population and their communities.

CDC has worked to provide people who are justice system-involved, correctional facility staff, public health professionals, community organizations, and anyone else with an interest in correctional health with data, testing and treatment guidelines, educational materials, and other correctional health resources.

How CDC supports correctional health

Community support.

• Funds partners working with health departments to improve health in the communites of justice-involved persons, particularly related to priority pathogens such as HIV, hepatitis, STIs, and TB.
• Develops programs and guidance that address community health disparities and social determinants of health (SDOH).

Intake / entry

• Develops intake screening and treatment guidance for use by clinicians/administrators of correctional health services and health departments.

During incarceration

• Works with state, tribal, local, and territorial health departments to investigate disease outbreaks.
• Develops and provides useful health education materials for staff and justice-involved persons.
• Supports projects that improve the continuity of care for people returning to their communities.
• Offers policy and planning guidance that support efforts to improve the continuity of care within communities.

Surveillance

• Identifies/monitors cases and potential exposures to HIV, viral hepatitis, STIs, TB, and other pathogens among persons who are justice-involved or work in correctional facilities.

According to the U.S. Bureau of Justice Statistics , over 5 million people are estimated to be under the supervision of U.S. adult correctional systems (in prison or jail, or on probation or parole). Many persons who are justice-involved experience multiple risk factors for HIV, viral hepatitis, sexually transmitted infections (STIs), tuberculosis (TB) and latent TB infection (LTBI), and traumatic brain injuries (TBI) and concussions . The prevalence of these infections, diseases, and injuries among people who are incarcerated is higher than in the general population.

• In 2021, about 1.1% of persons incarcerated in state and federal prisons were known to be persons with HIV; this rate was three times higher than the prevalence in the general U.S. population.
• In 2021, 16 U.S. states conducted mandatory HIV testing of all persons under state law enforcement custody, and 23 states and the U.S. Federal Bureau of Prisons offered opt-out HIV testing, accounting for 84% of all persons admitted and sentenced to more than 1 year in the custody of state and federal correctional authorities.
• In a 2013 survey of women across 20 metropolitan areas with high HIV prevalence, women who were recently incarcerated were significantly more likely to have factors that increase their risk for HIV infection than those who were never incarcerated, including receiving money or drugs in exchange for sex with a partner, multiple casual partners, multiple casual condomless partners, and sexually transmitted infection (STI) diagnosis.

More information on HIV Surveillance in the United States .

Viral hepatitis

• In 2009, a systematic review of 23 studies from incarcerated populations in the U.S. reported a wide chronic hepatitis B virus (HBV) prevalence range of 0.9%–11.4%.
• HBV prevalence has been estimated to be 3 to 38 times higher in correctional settings than in the general population in 2009.
• From 2013–2016, people who were incarcerated were estimated to have a rate of current hepatitis C virus (HCV) infection 10 times higher (10.7% vs 1%) than persons in the general population.
• Approximately 30% of all persons infected with HCV in the United States spend at least part of the year in correctional facilities.

More information on viral hepatitis surveillance in the United States.

• Males and females 35 years of age and younger in juvenile and adult detention facilities have been reported to have higher rates of chlamydia and gonorrhea than nonincarcerated persons in the community.
• Jail-based chlamydia screen-and-treat programs can potentially decrease chlamydia prevalence in communities with higher incarceration rates —as much as 13% in large communities and 54% in small communities.

More information on STIs among persons detained or incarcerated .

Tuberculosis (TB)

• In 2021, 2.4% of persons 15 years of age or older diagnosed with tuberculosis were current residents of correctional facilities at the time of diagnosis.
• From 2003–2013, annual median tuberculosis incidence was about 6 times higher for persons in jails and federal prisons compared with the general population.
• An analysis during 2011–2019 demonstrated that large tuberculosis outbreaks still occur in state prisons and account for a large proportion of total tuberculosis cases in some states.

For more information on Tuberculosis cases by residence in and type of correctional facility .

Traumatic brain injury (TBI)

• Research in the United States and from other countries suggests almost half (46%) of people in correctional or detention facilities such as prisons and jails have a history of TBI, but the exact number is not known.
• Studies show an association between people in correctional or detention facilities with a history of TBI and mental health problems, such as severe depression and anxiety, substance use disorders, difficulty controlling anger, and suicidal thoughts and/or attempts.
• People in correctional or detention facilities with TBI-related problems may not be screened for a TBI or may face challenges with getting TBI-related care. These challenges may continue after a person is released from the facility.

Find more information about TBI and other brain injuries .

CDC guidance and resources

HIV, viral hepatitis, STIs, and tuberculosis

• At-A-Glance: CDC Recommendations for Correctional and Detention Settings for Testing, Vaccination, and Treatment for HIV, Viral Hepatitis, TB, and STIs – Summary of current CDC guidelines and recommendations for testing, vaccination, and treatment of HIV, viral hepatitis, TB, and STIs for persons who are detained or incarcerated. Links to full guidance documents are included.
• Guidance on Management of COVID-19 in Homeless Service Sites and in Correctional and Detention Facilities – Guidance that can be used to inform COVID-19 prevention actions in homeless service sites and correctional and detention facilities.

Worker safety

• Safe and Proper Use of Disinfectants to Reduce Viral Surface Contamination in Correctional Facilities – Steps to reduce viral surface contamination through safe and proper use of disinfectants for persons who work in correctional facilities, including a companion printable poster to be displayed throughout the facility. The poster is available in English and Spanish.
• Reducing Work-Related Needlestick and Other Sharps Injuries Among Law Enforcement Officers (PDF) – Provides recommendations for reducing needlesticks and other sharps injuries to law enforcement officers, which specifically includes guidance for correctional employees.

Overdose prevention

• Partnerships Between Public Health and Public Safety – Overview of CDC partnerships built through multiple public health and public safety collaborations to strengthen and improve efforts to reduce drug overdoses.
• Public Health and Public Safety Resources – Resources for jails and prisons that support public health and public safety related to overdose prevention and medication-assisted treatment (MAT) for opioid use disorder.
• What Health Departments Need to Know When Responding to Mumps Outbreaks in Correctional and Detention Facilities – Job-aid with guidance for health departments and facilities during mumps outbreaks.
• LM Maruschak. HIV in Prisons, 2021—Statistical Tables. U.S. Department of Justice, Bureau of Justice Statistics, Washington, DC (Published May 2022). https://bjs.ojp.gov/document/hivp21st.pdf , Accessed 16 Mar 2023
• Wise A, Finlayson T, Nerlander L, Sionean C, Paz-Bailey G; NHBS Study Group. Incarceration, Sexual Risk-related Behaviors, and HIV Infection Among Women at Increased Risk of HIV Infection, 20 United States cities. J Acquir Immune Defic Syndr. 2017 Jul 1;75 Suppl 3:S261-S267. Incarceration, Sexual Risk-Related Behaviors, and HIV Infection Among Women at Increased Risk of HIV Infection, 20 United States Cities – PubMed (nih.gov)
• Harzke AJ, Goodman KJ, Mullen PD, Baillargeon J. Heterogeneity in Hepatitis B Virus (HBV) Seroprevalence Estimates from U.S. Adult Incarcerated Populations. Ann Epidemiol. 2009;19(9):647-650. doi:10.1016/j.annepidem.2009.04.001. Heterogeneity in Hepatitis B Virus (HBV) Seroprevalence Estimates from U.S. Adult Incarcerated Populations | Elsevier Enhanced Reader
• Roberts H, Kruszon-Moran D, Ly KN, Hughes E, Iqbal K, Jiles RB, Holmberg SD. Prevalence of Chronic Hepatitis B Virus (HBV) Infection in U.S. Households: National Health and Nutrition Examination Survey (NHANES), 1988-2012. Hepatology. 2016 Feb;63(2):388-97. doi: 10.1002/hep.28109. Epub 2015 Oct 27. PMID: 26251317. Prevalence of chronic hepatitis B virus (HBV) infection in U... : Hepatology (lww.com)
• Hofmeister MG, Rosenthal EM, Barker LK, et al. Estimating Prevalence of Hepatitis C Virus Infection in the United States, 2013-2016. Hepatology. 2019;69(3):1020-1031. doi:10.1002/hep.30297. Estimating Prevalence of Hepatitis C Virus Infection in the United States, 2013-2016 – PubMed (nih.gov)
• CDC 2021 Sexually Transmitted Infections (STI) Treatment Guidelines: Persons in Correctional Facilities
• Bernstein KT, Chow JM, Pathela P, Gift TL. Bacterial Sexually Transmitted Disease Screening Outside the Clinic–Implications for the Modern Sexually Transmitted Disease Program. Sex Transm Dis. 2016;43(2 Suppl 1):S42-S52. Bacterial Sexually Transmitted Disease Screening Outside the Clinic–Implications for the Modern Sexually Transmitted Disease Program – PubMed (nih.gov)
• Owusu-Edusei K Jr, Gift TL, Chesson HW, Kent CK. Investigating the potential public health benefit of jail-based screening and treatment programs for chlamydia. Am J Epidemiol. 2013 Mar 1;177(5):463-73. doi: 10.1093/aje/kws240. Epub 2013 Feb 12. PMID: 23403986. Investigating the potential public health benefit of jail-based screening and treatment programs for chlamydia – PubMed (nih.gov)
• CDC Tuberculosis Data & Statistics: Reported Tuberculosis in the United States, 2021 in Residents of Correctional Facilities https://www.cdc.gov/tb/statistics/reports/2020/risk_factors.htm Lambert LA, Armstrong LR, Lobato MN, Ho C, France AM, Haddad MB. Tuberculosis in Jails and Prisons: United States, 2002-2013. Am J Public Health. 2016 Dec;106(12):2231-2237. doi: 10.2105/AJPH.2016.303423. Epub 2016 Sep 15. PMID: 27631758; PMCID: PMC5104991. Tuberculosis in Jails and Prisons: United States, 2002-2013 – PubMed (nih.gov)
• Stewart RJ, Raz KM, Burns SP, Kammerer JS, Haddad MB, Silk BJ, Wortham JM. Tuberculosis Outbreaks in State Prisons, United States, 2011 – 2019. Am J Public Health. 2022, 112(8), 1170-1179. PMID: 35830666; PMCID: PMC934802. Doi: 10.2105/AJPH.2022.306864
• Hunter S, Kois L, Peck A, Elbogen E, LaDuke C. (2023). The prevalence of traumatic brain injury (TBI) among people impacted by the criminal legal system: An updated meta-analysis and subgroup analyses. Law and Human Behavior , 47(5), 539–565.
• Moore E, Indig D, Haysom L. Traumatic brain injury, mental health, substance use, and offending among incarcerated young people. Journal of Head Trauma Rehabilitation. 2014;29(3):239-247.
• Ray B, Sapp D, Kincaid A. Traumatic brain injury among Indiana state prisoners. Journal of Forensic Sciences. 2014;59(5):1248-1253.
• Walker R, Hiller M, Staton M, Leukefeld C. Head injury among drug abusers: An indicator of co-occurring problems. Journal of Psychoactive Drugs. 2003;35(3):343-353.
• Slaughter B, Fann J, Ehde D. Traumatic brain injury in a county jail population: Prevalence, neuropsychological functioning and psychiatric disorders. Brain Injury. 2003;17(9):731-741.
• Blaauw E, Arensman E, Kraaij V, Winkel F, Bout R. Traumatic life events and suicide risk among jail inmates: The influence of types of events, time period and significant others. Journal of Traumatic Stress. 2002;15(1):9-16.
• Allely C. Prevalence and assessment of traumatic brain injury in prison inmates: A systematic PRISMA review. Brain Injury. 2016;30(10):1161-1180.
• Williams W, Mewse A, Tonks J, Mills S, Burgess C, Cordan G. Traumatic brain injury in a prison population: Prevalence and risk for re-offending. Brain Injury. 2010;24(10):1184-1188.
• “Criminal legal system” may also be used as an alternative to “justice system” to reflect historic and current challenges to achieving justice in the U.S. criminal legal system.

CDC provides health resources to protect the health of people in correctional settings who are at higher risk for HIV, Viral Hepatitis, STIs, and Tuberculosis.

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May 14, 2024

California moves faster to transform mental health system for all, with urgent focus on most seriously ill & homeless

WHAT YOU NEED TO KNOW : California is accelerating the distribution of billions of dollars in new funding available to counties and others to construct outpatient, inpatient, and residential behavioral health facilities and creating new mental health resources for Californians across the state.

REDWOOD CITY – Today, while visiting a behavioral health treatment center under ongoing expansion in San Mateo County, Governor Newsom announced the state is accelerating – in record time – the first round of funding, made available by Prop 1, to boost California’s ongoing transformation of the statewide Behavioral Health system.

In addition to announcing the faster availability of billions of dollars in Behavioral Health Bond construction funding – through the recently passed Prop. 1 – Governor Newsom announced a new website: MentalHealth.ca.gov, which will serve as a one-stop source for people in need of mental health support and includes information about the state’s ongoing behavioral health transformation. And while visiting San Mateo County, Governor Newsom announced the county would be an early adopter of the CARE Act, not waiting for the December 1 deadline to bring lifesaving help to people with untreated schizophrenia spectrum or other psychotic disorders.

“California is moving full steam ahead, getting funding out faster, and implementing key reforms sooner to better help Californians. The status quo is simply unacceptable. People are demanding more accountability, with real results. That is what we are aiming to deliver, but the state cannot do it alone – it is time for local officials to step up and begin to use the tools available to them to make our communities healthier and safer for all. San Mateo has stepped up. Now it’s time for other counties to do the same.”

Governor Gavin Newsom

The Redwood City location is utilizing investments from the Behavioral Health Bridge Housing (BHBH) program , which, since 2022, has provided funding to short-term “bridge” housing settings to address the immediate and sustainable housing needs of people experiencing homelessness who have serious behavioral health conditions. Treatment centers and campuses like the one highlighted today will be possible all across the state thanks to the recently passed $6.38 Billion bond which builds on state-funded construction over the last three years to open new treatment and housing sites with each passing month.

NEW BEHAVIORAL HEALTH CONSTRUCTION FUNDING : Eligible entities, which include counties, cities, tribal entities, non-profits, and for profits, will be able to apply for funding from the first round of the $6.38 billion bond this summer. This bond application timeline is months ahead of the initial schedule, thanks to the work of the Governor’s internal strike team focused on getting results and implementation as quickly as possible.

DETAILS : The Department of Health Care Services (DHCS) has issued its bond guidance for behavioral health treatment beds and sites (for $3.3 billion, or 75%, of the $4.4 billion overall, for Launch Ready projects), with the request for application to be posted this summer. Additionally, the California Health and Human Services Agency, California Veterans Affairs Agency (CalVet), and the Department of Housing and Community Development (HCD) at the Business, Consumer Services, and Housing Agency have jointly briefed county, city, and other community and local leaders on their role in implementing this historic transformation and the resources and tools available to them. HCD, with CalVet, will issue its bond guidance for supportive housing ($2 billion overall, with $1 billion for veterans) by end of 2024.

WHY THIS MATTERS : A RAND study and a DCHS needs assessment identified a current gap in behavioral health inpatient treatment beds and outpatient treatment centers in California – making it harder for people to get the treatment they need. Cutting tape and moving faster to get bond funding out means key behavioral health infrastructure sites can be built faster. That means more beds and more treatment slots for Californians who need them to get the support and care they need to get healthy. Similarly, supportive housing units will help re-house and keep housed people with both housing and behavioral health challenges who too often suffer on the streets and in our jails.

Learn more about California’s Behavioral Health System

NEW MENTAL HEALTH RESOURCES WEBSITE : Additionally, Governor Newsom announced the launch of MentalHealth.CA.gov, a one-stop website for people seeking mental health resources available to Californians. Accompanying these life-saving resources is initial high-level information and resources about the ongoing transformation of the state’s behavioral health system, with even more details and local tracking tools coming online in the coming months. This will help Californians see how their own county government is using the tools and resources already available to them.

WHY CALIFORNIANS SHOULD CARE : Governor Newsom is focused on transparency and accountability as the state implements this voter approved Proposition. Version 1.0 of this website has initial information on implementation and current tools available to counties who administer the state’s behavioral health system. This website will continue to be built out to include additional details and data, so people will be able to see how their county compares to other California counties.

Visit MentalHealth.CA.Gov

CARE ACT EXPEDITED IN SAN MATEO COUNTY : And while in San Mateo County today, Governor Newsom spoke about the county moving to adopt the CARE Act earlier than others – showing real progress and a need from locals to utilize all of the tools currently available to them for the results Californians are demanding.

DETAILS : Over the last 6 months, California’s Health and Human Services Agency (CalHHS) traveled the state performing “site visits” with each of the eight counties currently implementing CARE Court. During these visits, CalHHS has worked to problem solve, share best practices, and identify ways to refine and continually improve the process for all participants and all counties (which must implement no later than December 2024).

WHY STARTING CARE COURT NOW IS IMPORTANT : Spearheaded by Governor Newsom and the Legislature in 2022, the CARE Act is an innovative new pathway to ensure people with untreated schizophrenia spectrum or other psychotic disorders actually get the help they need in the community. In addition to being a tool to engage the individual, this civil court process also includes accountability measures to ensure local behavioral health systems don’t let people fall through the cracks. Seven counties initially implemented the CARE Act in October 2023 and Los Angeles county implemented it in December 2023. Over 450 petitions have already been submitted in just those eight counties in about the first six months. Even more people have been helped due to CARE Act outreach teams who do not need to enter the full CARE Act process but begin receiving help as a result. Additional counties are able to join at any time. San Mateo implementing earlier than required indicates county leadership is serious about tackling the mental health and homelessness crises.

In addition to providing resources and guidance on implementing the CARE Act, DHCS is issuing a new FAQ and optional standardized forms related to the modernization of conservatorship (SB 43), to add on to the county guidance released last month. Two counties have already begun implementing, and these new resources are designed to make it clear that counties do not need to wait until the January 1, 2026 deadline to begin implementing this reform to help gravely disabled people in their communities – one of the many new tools available to them so Californians can begin to see the results in their communities that they deserve.

Rendering of What The Redwood City Location Will Look Like Once Completed

BIGGER PICTURE : Transforming the Mental Health Services Act into the Behavioral Health Services Act and building more community behavioral health treatment sites and supportive housing is the central pillar of Governor Newsom’s Mental Health for All – pulling together significant recent reforms like 988 crisis line, CalHOPE, CARE Act, conservatorship reform, CalAIM behavioral health expansion (including mobile crisis care and telehealth), Medi-Cal expansion to all low-income Californians, Children and Youth Behavioral Health Initiative (including expanding services in schools and on-line), Veterans Health Initiative, Older Adult Behavioral Health Initiative, Behavioral Health Community Infrastructure Program, Behavioral Health Bridge Housing, Behavioral Health CONNECT to address gaps in the community care continuum, expand effective practices, diversify the workforce, and more.

Health care , Press Releases , Top Story

Carroll University is offering free mental health counseling services this summer. Here's why.

WAUKESHA – You have insurance but it's the wrong one. You have the right therapist but she's out of network. You have the right insurance but the appointment is eight months away.

It's a frustratingly common set of barriers in the United States, at a time when one in six Americans are seeking or want to seek mental health services, according to the National Council for Mental Well-Being . One in five Americans, or 53 million, report wanting to see a professional but aren't able to, for reasons outside of their control.

In Wisconsin, just half of the more than 800,000 adults with a mental illness are able to receive treatment in Wisconsin, according to the Wisconsin Department of Health Services .

As the director of the Carroll University Community Counseling Center, Jessica Lahner is acutely aware of the problems Wisconsinites face when they seek mental health treatment. That's part of why Carroll University's counseling center will be available free to the wider community from May 16 to Aug. 22 at 237 Wisconsin Ave. in Waukesha, no insurance required.

It's the second summer this free service is being offered.

Lahner developed the program in 2021 amid the rising need for mental health services during COVID-19 . One of the biggest obstacles to accessing mental health care, said Lahner, comes from a persistent workforce shortage, one that predates the pandemic. A DHS map of Wisconsin showing designated health professional shortage areas, or HPSA, glows red across much of the state when it comes to mental health, indicating high needs.

"We want to eliminate obstacles and really open our doors to folks who need behavioral and mental health care, regardless of their ability to pay," Lahner said.

How does the free summer clinic work?

Amid an ongoing workforce shortage and high demands for services, a free summer clinic certainly stands out. But there's something of a symbiosis at play at the Community Counseling Center. Of the seven clinicians taking patients this summer, three are graduate students who are working under supervision. It's akin to medical students in clinical rotation and the idea is to get first-hand experience with patients.

Keeley Hamill, a third-year graduate student, is gearing up for her second year offering free summer services to the community. Like anything new, the first year came with a few bumps along the way, like navigating the center's technology. But throughout the process, Hamill said she felt "extremely supported" as she honed her practice and came into her own.

Sara Ruiz, a second-year student who also took part in the free services last summer, said she worked with a diverse set of community members, some of whom struggled with depression and anxiety, others who needed case managers and at least one person with a diagnosis of obsessive compulsive disorder, commonly referred to as OCD.

"It was nice to get feedback (from supervisors) on how we're growing, and to see that we're still acting within evidence-based practices, we're still acting ethically, we're getting really good supervision and we've got a variety of clients," Ruiz said.

The four faculty clinicians who work with the students can count the summer counseling as part of their faculty load, Lahner said, which means they're able to focus on working with the community and supervising graduate students instead of administrative duties.

"I think Carroll's commitment to supporting this clinic is a testament to how this clinic offering is really aligned with not only the values of our training program, but also Carroll as an institution," Lahner said.

How often will the clinic be open?

The clinic will be open twice a week, on Tuesday from 11 a.m. to 7 p.m., and Thursday, 9 a.m. to 5 p.m.

What is the wait period?

Last summer, the Community Counseling Center provided 140 counseling sessions across the summer. Lahner said the center felt hesitant about marketing the services out of fear the demand would outpace what clinicians could offer. That didn't happen.

Instead, they were able to regularly schedule screenings and see clients. The only limitation, Lahner said, had to do with limited services hours. But Lahner doesn't anticipate a waitlist this summer.

The center has the capacity to see 19 clients a week, which is about 260 sessions over the course of 15 weeks.

"We were open two days a week, like we are now and and we considered it a wild success," Lahner said. "And so we're definitely increasing our marketing this summer. We want folks to know that we're here."

Who can access this free service?

Anybody can access the service, regardless of where they live in the state of Wisconsin. That's because the center isn't funded by Waukesha County or the city of Waukesha. As long as you're able to drive to the Carroll University campus or are open to virtual services, Wisconsin residents can take advantage of the free service.

Did the Community Counseling Center turn people away last summer?

Some high-risk symptoms, like suicidality, aren't appropriate for short-term outpatient care.

Last summer, Lahner said the center turned some people away when a screening presented a high risk. These are clients who need emergency crisis services. In such cases, the center is to "do a warm handoff" to providers and partners in the greater Waukesha area or beyond.

"We need to make sure that that client is able to function successfully in between seeing us each week, as an outpatient provider," Lahner said. "If we feel confident that the client may be struggling with chronic severe mental illness, but they are managing well enough over the course of the week and they have support from other providers, they can be a really good fit for us."

What happens after Aug. 22?

Last summer, Lahner and her team were able to successfully refer clients to providers that fit their needs. In some cases, the clients had insurance but their high deductible prevented them from accessing counseling services, so the team helped by coordinating sliding scale services with providers.

Other times, clients were in high-risk relationships that made it hard for them to consistently see a therapist. Lahner and her team get creative about setting up care, such as coordinating with retired licensed practitioners who are willing to work pro-bono through churches and nonprofits.

What needs to change in health care?

When Ruiz, the Carroll University graduate student, was growing up, she didn't see a lot of health care professionals who looked like her as a Mexican American. For her, a lack of cultural competency — the ability to understand, appreciate and interact with people from cultures or belief systems different from one's own — remains an issue that she hopes to see remedied.

Additionally, mental health professionals need to find ways to connect to each other on a regularly basis to avoid burnout, said Hamill, the other Carroll graduate student. At Carroll University, graduate students have a strong connection, but once they get into private practice, "you just get into your little bubbles."

One way to pop that bubble is by creating more opportunities for integrated health care where medical and behavioral health care practitioners can work within one clinic, Lahner said. It's a mindset that both Ruiz and Hamill agree would help create holistic practices that give patients more options.

"I think that one of the most important things that Carroll has taught us is connect, connect, connect," Hamill said. "We're all in this together. We cannot be standalone or else we will burn out. And if we're burnt out, then there's no one left to be able to offer these services."

How do I sign up for free counseling services?

People interested in making an appointment can visit carrollu.edu/carroll-community-counseling-center and clicking the orange button, "Make an appointment." For more information, call 262-951-3127 or email [email protected] .

Natalie Eilbert covers mental health issues for the Milwaukee Journal Sentinel. She welcomes story tips and feedback. You can reach her at  [email protected]  or view her Twitter profile at  @natalie_eilbert . If you or someone you know is dealing with suicidal thoughts, call the National Suicide Prevention Lifeline at 988 or text "Hopeline" to the National Crisis Text Line at 741-741.

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Biden-Harris Administration Announces Maternal Mental Health Task Force’s National Strategy to Improve Maternal Mental Health Care Amid Urgent Public Health Crisis

The U.S. Department of Health and Human Services (HHS) announced the release of a national strategy today, with recommendations developed by the Task Force on Maternal Mental Health , a subcommittee of the Substance Abuse and Mental Health Services Administration’s (SAMHSA) Advisory Committee for Women’s Services, to address the urgent public health crisis of maternal mental health and substance use issues. The Report to Congress and accompanying National Strategy to Improve Maternal Mental Health Care are part of broader federal efforts to address women’s overall health, and maternal health in particular, across the nation, consistent with the White House Blueprint for Addressing the Maternal Health Crisis and the White House Initiative on Women’s Health Research .

The United States has the highest maternal mortality rate among high-income countries. Deaths from suicide, drug overdoses, and other causes related to mental health and substance use issues are the leading cause of pregnancy-related deaths in the U.S., accounting for more than 22% of those deaths. An estimated one in five individuals are impacted by mental health conditions – including mood disorders, anxiety disorders, trauma-related disorders, obsessive-compulsive disorder, and postpartum psychosis – and substance use disorders (SUD) during pregnancy and the postpartum period and disproportionately affect Black and American Indian/Alaska Native individuals and others in under-resourced communities.

“Addressing the maternal mental health crisis is a top priority for the Biden-Harris Administration. Many of these tragic deaths can be prevented by eliminating health disparities and understanding the impact of mental health during pregnancy and in the first months as a parent,” said HHS Secretary Xavier Becerra. “We want to address the challenges people are facing, decrease stigma associated with these challenges, and improve access to support both inside and outside of the health care system. I want to thank the task force for developing recommendations on how we can work to expand access to equitable treatment that will improve outcomes and help families thrive.”

“At HHS we are working every day to transform behavioral health. This critically includes providing support for maternal mental health,” said HHS Deputy Secretary Andrea Palm. “This report, and the accompanying National Strategy, will further our efforts to improve access to care – including the integration of perinatal behavioral health care across our health and social systems.”

The Task Force on Maternal Mental Health is co-chaired by Admiral Rachel Levine , M.D., HHS Assistant Secretary for Health, which oversees the Office on Women’s Health, and Miriam E. Delphin-Rittmon , Ph.D., HHS Assistant Secretary for Mental Health and Substance Use and the leader of HHS’s SAMHSA.  

The task force is a subcommittee of the Advisory Committee for Women's Services which is a federal advisory committee made up of more than 100 federal and nonfederal members, including experts in obstetrics and gynecology, maternal and child health, clinical and research, psychiatry, psychology, counseling, gender-based violence, strategic policy, community behavioral health, federal-community partnerships and those with lived experience.

“This announcement is the result of the Task Force on Maternal Mental Health’s efforts to support ways to address the nation’s maternal mental health crisis,” said Admiral Rachel Levine, Assistant Secretary for Health. “The effort this task force put forth in developing comprehensive recommendations on ways to address the maternal mental health crisis is important towards informing HHS’ strategy moving forward. We look forward to reviewing the recommendations proposed in National Strategy to Improve Maternal Mental Health Care to improve maternal mental health outcomes.”

“Untreated maternal mental health and substance use conditions can have negative and long-lasting effects on individuals and families; in the worst cases, these issues result in needless deaths,” said Assistant Secretary Delphin-Rittmon. “Many of these deaths are preventable, and we are grateful for the task force’s recommendations included in this National Strategy to address these critical challenges.” 

In the national strategy, the task force vision calls for a seamless integration of perinatal mental health and substance use care across medical, community, and social systems that increases equity and access, improves federal coordination, and elevates culturally relevant supports and trauma-informed approaches.

Building upon existing federal government efforts, the task force outlines a path to achieve the vision in the national strategy within a framework of five core pillars, each with supporting priorities and recommendations.

The five pillars of the national strategy focus on: building a national infrastructure that prioritizes perinatal mental health and well-being, with a focus on reducing disparities; making care and services accessible, affordable, and equitable; using data and research to improve outcomes and accountability; promoting prevention and engaging, educating, and partnering with communities; and lifting up the voices of people with lived experience.

The national strategy is a living document that will be regularly updated by the task force. The federal government will consider the strategy as it continues addressing the maternal mental health crisis.

The National Maternal Mental Health Hotline provides free, confidential, 24/7 mental health support for moms and their families before, during, and after pregnancy. Counselors are available in English and Spanish, and interpreters are available to support callers in 60 other languages. Call or text 1-833-TLC-MAMA (1-833-852-6262).

If you or someone you know is struggling or in crisis, help is available. Call or text 988 or chat 988lifeline.org.

To learn how to get support for mental health, drug, and alcohol issues, visit FindSupport.gov. Anyone seeking treatment for mental health or substance use issues should call SAMHSA’s National Helpline at 800-662-HELP (4357) or visit findtreatment.samhsa.gov.

Reporters with questions should send inquiries to [email protected] .

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More From Forbes

3 signs your job is affecting your mental health.

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Too many people suffer in silence due to toxic workplace culture. From being belittled by your boss to dealing with competition with your coworkers, being in a toxic workplace can be draining. So, are you feeling depressed? Are you isolating from family and friends? Are you drinking more and living for the weekends? If you answered yes to any of these questions you may want to consider how your job is affecting your mental health .

Those who dread going to work or having one-on-one meetings with their boss may want to find another job. I don’t recommend leaving a job without having another one lined up. This doesn’t apply to situations where someone is thinking about self harm or is at risk of a mental health crisis.

This month is Mental Health Awareness Month , which means even more professionals are talking about mental health in the workplace. That’s why I made a list of signs that your job is affecting your mental health.

Dreading Work

This is a feeling most people have experienced. And it’s not your typical case of Sunday scaries. Jobs that make you take on maladaptive behaviors like chain smoking, nail biting, or skin pulling are not healthy. If you can’t afford to leave your job do everything you can to find a new one. When I am job hunting I get on weekly if not biweekly calls with professionals from LinkedIn. If you decide to do this try to connect with people in your field of work who have similar interests and values.

There’s no need to tell everyone you talk to that you plan to find a new job. Stick to a select group of people who can offer expertise and advice. If you are connected with colleagues on platforms like LinkedIn , X, and Instagram, do not post or mention that you are looking for a new opportunity. Be careful about who you tell about toxicity at work especially if you are in a niche field where people tend to know each other.

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Baby reindeer piers morgan seeks richard gadd for interview after real martha segment, tyson fury vs oleksandr usyk results winner scorecard and reaction, feeling depressed.

Losing interest in things you loved before is a sign that you may be depressed. Consider talking to a medical professional about what you can do to manage your depression. Recognize that feeling hopeless is a major symptom of depression . Know that you won’t be at a toxic job or working under a toxic manager forever. It can be hard to apply for jobs while working full-time. And depression can cause people to feel less motivated. But you shouldn't spend your weekends binge watching TV and sleeping excessively when you’re trying to find a new job. Ask a medical professional or therapist about behaviors that will help you feel more motivated.

If you are so depressed that you are struggling to function it may be time to consider going on an antidepressant. Make sure that you consult a psychiatrist before taking an antidepressant. People who prefer not to take medication can try self-care practices that are known to reduce depression. That includes exercise, which is a great way to unwind after a long work day.

Drinking Heavily

Many professionals begin drinking heavily when they don’t enjoy their jobs. What may start as a nightcap could turn into full blown alcoholism. Anyone in the medical field will tell you that self-medicating isn’t healthy. Addiction is a vicious cycle, which some people get caught in due to being overwhelmed, depressed, or anxious from working in a toxic environment. If you work for someone that makes you feel any of those things make sure to monitor your alcohol consumption.

Also, you shouldn’t be binge drinking on weekends or drinking every day after work. Substitute unhealthy behaviors with fulfilling self-care methods like exercising, taking a hot bath, getting a massage, doing acupuncture, or spending time outside. All of these forms of self-care can make you feel less depressed, but it may not be enough. Remember that it’s okay to not be okay.

Lean on your family, friends, and community to get through. If you don’t enjoy your job, constantly dread work, feel depressed, or drink heavily after work, know that you are not alone. You have a bright future ahead of you, but you can’t thrive in your career if you don’t prioritize your mental health.

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