social work case study mental health

• Master of Social Work
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Mental Health

• Mental health with adults: On-campus, Intensive Weekend, Online
• Mental health with children and adolescents: On-campus

Due to an increased awareness of compelling public health challenges, clinical social workers and therapists have moved to the forefront of identifying and advancing solutions to some of society’s most formidable public health challenges, including violence, trauma, suicide, and co-occurring substance abuse and mental health disorders.

The mental health specialization will prepare you for community‐based mental health practice in a variety of professional settings, such as hospitals, schools, child and family service agencies, substance abuse treatment programs and mental health centers.

The Mandel School’s mental health specialization faculty are advanced-level clinicians with extensive experience working in premiere mental health community treatment settings. In this specialization, you will integrate knowledge of biopsychosocial assessment and clinical practice theories with relevant content from rigorous evidence-based interventions. By graduation, you will have developed a solid foundation of practice skills, preparing you for clinical case manager and therapist positions.

Learn to incorporate strategies maximizing client and community strengths guided by recovery and resiliency philosophies, and think critically about how to leverage the myriad ways social and cultural diversity influences illness manifestations, wellness trajectories and treatment pathways.

Public mental health service provision requires a keen trauma-informed lens that accounts for the varied and complex clinical presentations encountered by therapists. At the Mandel School, you will become well-versed in trauma assessment as well as treatment approaches, allowing you to integrate trauma work within diverse clinical populations served through multiple human service sectors including health, behavioral health, education, child welfare, adult protective services, and juvenile and criminal justice.

From the Chair

"The Mandel School’s mental health specialization is ideally suited to integrate the resources of the school’s violence research and evidence-based practice training centers with advanced community mental health practice partners to educate the next generation of social work mental health and behavioral health clinicians.”

—David Hussey, PhD, associate professor, chair of the mental health specialization

Related Opportunities

• Advanced standing
• Certificates
• Combined graduate study (3+2 social work)
• Dual degrees
• Interprofessional education
• School social work
• Study abroad

Careers in Mental Health

• Case manager
• Care coordinator
• Child therapist
• Crisis response worker
• Family therapist
• Mental health counselor
• Program manager/director
• Psychotherapist

“One great memory of my time at the Mandel School was my second year field placement at Circle Health Services as a Behavioral Health Intern. I really enjoyed being in my role, the staff, the other interns, my clients and my supervisor who was an alum from the Mandel School.”

—Leah Adams, MSSA/MNO 2019

Sample Courses

• Mental Health Policy and Service Delivery
• Social Work in Child Abuse/Family Violence
• Social Work Practice in Mental Health: Adults
• Social work Practices in Mental Health: Children/Adolescents

Examples of Field Education Sites

• Catholic Charities
• Centers for Families and Children  
• Cleveland Rape Crisis Center        
• National Youth Advocate Program

• Research article
• Open access
• Published: 01 April 2021

Three case studies of community behavioral health support from the US Department of Veterans Affairs after disasters

• Tamar Wyte-Lake   ORCID: orcid.org/0000-0001-8449-7701 1 , 2 ,
• Susan Schmitz 1 ,
• Reginald J. Kornegay 3 ,
• Felix Acevedo 4 &
• Aram Dobalian 1 , 5  

BMC Public Health volume  21 , Article number:  639 ( 2021 ) Cite this article

2218 Accesses

1 Citations

Metrics details

Community disaster resilience is comprised of a multitude of factors, including the capacity of citizens to psychologically recover. There is growing recognition of the need for public health departments to prioritize a communitywide mental health response strategy to facilitate access to behavioral health services and reduce potential psychological impacts. Due to the US Department of Veterans Affairs’ (VA) extensive experience providing trauma-informed behavioral healthcare to its Veterans, and the fact that VA Medical Centers (VAMCs) are located throughout the United States, the VA is well situated to be a key partner in local communities’ response plans. In this study we examined the role the VA can play in a community’s behavioral health response using case studies from three disasters.

This study investigated experiences of VA employees in critical emergency response positions ( N  = 17) in communities where disasters occurred between 2017 and 2019. All respondents were interviewed March–July 2019. Data were collected via semi-structured interviews exploring participants’ experiences and knowledge about VA activities provided to communities following the regional disasters. Data were analyzed using thematic and grounded theory coding methods.

Respondents underscored VA’s primary mission after a disaster was to maintain continuity of care to Veterans. The majority also described the VA supporting community recovery. Specifically, three recent events provided key examples of VA’s involvement in disaster behavioral health response. Each event showed VA’s integration into local response structures was facilitated by pre-existing emergency management and clinical relationships as well as prioritization from VA leadership to engage in humanitarian missions. The behavioral health interventions were provided by behavioral health teams integrated into disaster assistance centers and non-VA hospitals, VA mobile units deployed into the community, and VA telehealth services.

Conclusions

Recent disasters have revealed that coordinated efforts between multidisciplinary agencies can strengthen communities’ capacity to respond to mental health needs, thereby fostering resilience. Building relationships with local VAMCs can help expedite how VA can be incorporated into emergency management strategies. In considering the strengths community partners can bring to bear, a coordinated disaster mental health response would benefit from involving VA as a partner during planning.

Peer Review reports

Disaster behavioral health

The current COVID-19 pandemic, while still underway, has already demonstrated the need for psychological interventions to manage the isolation, stress, and trauma stemming from the ongoing disaster [ 1 , 2 , 3 , 4 , 5 ]. While the scale of the event is unprecedented, interest in understanding the psychological consequences of disasters is not unique to the pandemic [ 6 , 7 , 8 , 9 , 10 ]. Generally, studies exploring the impacts of disasters on behavioral health have found increases in psychological distress in the short term, with the potential for some individuals to experience long-term psychiatric disorders such as posttraumatic stress disorder, depression, and anxiety [ 6 , 7 , 8 , 9 , 10 ].

To ameliorate the potential negative health effects to impacted populations, numerous early interventions have been explored [ 7 , 11 , 12 , 13 , 14 ]. Some countries such as the Netherlands and Iceland use federally structured plans to implement disaster behavioral health interventions [ 12 , 15 ]. And countries like New Zealand have invested heavily in developing extensive mental health programs in response to large scale disaster events [ 16 , 17 ]. In the United States, federal entities strive to create resources and guidance on implementing behavioral health services after disaster, however, interventions are generally managed and delivered by state, territory, and local agencies [ 14 , 18 , 19 ]. Often, after federally declared disasters, the US Federal Government additionally provides funding through the Crisis Counseling Assistance and Training Program (CCP) to community behavioral health programs [ 8 , 13 , 20 ]. Yet the structure and content of interventions are left to the discretion of the implementing agency.

Regardless of the services provided, having a plan in place prior to a disaster can facilitate implementation [ 8 , 11 , 12 , 13 , 19 , 21 , 22 ]. Few publications detail the creation of a local disaster behavioral health response plans [ 15 , 18 , 20 ] or describe the process in which interventions were deployed following an incident [ 7 , 10 , 15 , 20 , 23 , 24 ]. Common themes arising in studies exploring disaster behavioral health plans or interventions are the need for interdisciplinary teams and interagency collaboration [ 8 , 12 , 18 , 19 , 20 ] and strong community response [ 16 ].

The United States Department of Veterans Affairs

One interagency partner often overlooked in the United States is the U.S. Department of Veterans Affairs (VA) Veterans Health Administration (VHA). Previous publications on VHA’s participation in collaborative disaster planning and preparedness efforts with local communities identified barriers to its involvement [ 25 , 26 ]. One such barrier is that the community, and sometime even VHA employees, are unaware that VHA is tasked with planning for and acting to support “national, state, and local emergency management, public health, safety and homeland security efforts” [ 9 , 27 ]. This responsibility to contribute to community efforts is called the VA’s Fourth Mission and is in addition to VHA’s duty to ensure continuity of services to veterans after a disaster.

The expertise of VHA’s 322,030 healthcare professionals and support staff who provide a range of services at its 1255 healthcare facilities spread throughout the U.S. and its territories makes VHA a valuable potential partner in disaster response [ 28 ]. In addition to inpatient and ambulatory medical care, VHA provides a variety of reintegration programs including trauma recovery and behavioral health services for Veterans and their families at its facilities and through community-based care at Vet Centers, Mobile Vet Centers, and college and university campuses [ 29 ]. How these services are applied in community response efforts has been detailed in the grey literature [ 28 , 30 , 31 , 32 ].

This study highlights the potential role of local VA facilities in supporting local behavioral health activities after a disaster, and specifically, presents three exemplars of VHA integrating into communities’ disaster behavioral health response and providing behavioral health support to non-Veterans. The three VA facilities and the events they responded to are: (1) VA Pacific Island Healthcare System (VAPIHC), which is based in Honolulu, Hawaii but provides care to Veterans throughout numerous Pacific Islands. On October 24th, 2018, Super Typhoon Yutu made direct landfall on the Mariana Islands, a US Commonwealth with a nascent established VA tele-mental health clinic on the island of Tinian. This was the strongest typhoon ever recorded to strike the area, severely damaging or destroying many buildings and much of the critical infrastructure of Tinian [ 33 ]; (2) Orlando VA Healthcare System, which serves east central Florida, and encompasses 7 counties. On June 12, 2016, a domestic terrorist attack [ 34 ], targeted hate crime, and one of the deadliest mass shootings in the U.S. occurred at a local establishment, Pulse Nightclub. In a matter of hours, 49 people were killed and 53 were wounded before law enforcement breached the building and ended the violence [ 35 ]; and (3) VA Southern Nevada HCS (VASNHCS), located in and providing care throughout Las Vegas, Nevada. On October 1, 2017, the worst mass shooting in modern history took place at the Route 91 Harvest Music Festival on the downtown Las Vegas Strip. A gunman opened fire on a crowd of more than 22,000, killing 58 people and wounding 413 [ 36 ]. These cases provide examples of interagency partnerships and the implementation of collaborative responses for communities developing their own plans to address the behavioral health needs of their citizens during disasters, including the ongoing COVID-19 pandemic.

Study design

The results presented in this paper stem from a larger study broadly examining the role of local VA facilities in responding to regional large-scale disasters. This study used qualitative interview methods to elicit study participants’ experiences during disasters impacting the U.S. between 2016 and 2018 (see Table  1 for the full list of the disasters covered in the study, the impacted US states and territories, and VA entities affiliated with the impacted areas). Findings on disaster behavioral health functions were pulled as a subset of data and analyzed. The VA Greater Los Angeles Healthcare System Institutional Review Board (Los Angeles, California USA) approved this study.

Setting and sample

The full study sample was purposively chosen to represent individuals with emergency response roles critical to coordinating VA’s local response to disasters. Emergency management personnel at various levels of the VA were the first point of contact and, when applicable, identified additional individuals with critical response roles to interview. Additional respondents were recruited independently by the project team These facilities made up the broad recruitment sample. Due to some respondents covering multiple disasters or being deployed to disasters outside their normal service region, not all entities were included in the final sample.

Data collection methods

Data were collected through semi-structured, 60-min telephone interviews between March–August 2019, using an interview guide developed for this study (see Additional file  1 ). Interviews were conducted individually with each respondent and led jointly by at least two of the authors. Interviews explored participants’ experiences and knowledge about VA activities in the community, specifically focusing on how VA networked and coordinated with non-VA community agencies. Interviews were audio-recorded, although one respondent declined to be recorded.

Analysis plan

A total of 17 individuals were interviewed. However, five interviews did not indicate collaborating with non-VA entities and were therefore not included in the analysis. Due to their involvement in multiple disasters, two respondents were interviewed twice. At completion of the interviews, this resulted in 13 interview recordings being transcribed, and one set of interview notes (due to interviewee declining to be recorded), resulting in a total of 14 interviews that were analyzed with Atlas.ti (v.7) using a grounded theory approach. In phase one of analysis, one author reviewed all 14 interviews, using inductive coding to identify emergent themes in the data, and informed by extensive conversations about project findings held by the project team at the conclusion of each interview [ 37 ]. As a product of this process, a significant emergent theme [ 37 ] was the presence of interagency partnerships implementing collaborative responses to address the behavioral health needs of local citizens during disasters. A decision was made by the project team to narrow the focused coding analyses [ 37 ] to the way local VA facilities engaged in a behavioral response within their local community, in response to their respective large-scale disaster events.

In phase two of the analysis, the initial codes identified by SS were reviewed by TWL for consistency and agreement. Codes not deemed consistent to the focus topic were dropped. Additional grounded themes were confirmed by the team and applied to the data set [ 37 ]. Consensus on final codes was achieved, and one code list was finalized. In phase three of the analysis, the final code list was applied across all relevant interviews. The final code list had a focus on behavioral health response, including behavioral health activities, method of delivery, reactions of staff, and types of impacted community populations, but also included an identification of high level themes across all disasters, including VA expertise, integrating into local, established response activities, identification of local needs, and logistical challenges. Authors TWL and SS then independently coded each interview and resolved discrepancies by consensus.

All respondents played a substantial role in VA’s activities following the respective disasters. However, only 12 participants indicated the VAMC they supported collaborated with non-VA partners during the event in question. Included disasters ranged from widespread to geographically contained; weather-related to acts of violence; and direct impact on VA facilities ranged from none to significant. Though not all respondents described intensive engagement with the community following the event, all respondents described the importance of integrating into local, established response activities. This translated into involvement in community-wide drills and planning committees and following the lead of local incident command. Respondents indicated one of the areas where the VA could provide support to the community was in disaster behavioral health relief operations.

Activities described by respondents were often centered around tasks where the VA could reduce the caseload of other community agencies by identifying Veterans obtaining services in the community and meeting their needs regardless if they were previously enrolled in VA benefits. One key activity described by several respondents included outreach into local shelters. As one respondent explained, VA staff at shelters “[distribute] fliers [that] outline that our counselors are experts in trauma, loss, and in readjustment. They also provide referrals to Veterans for a variety of services, including housing and employment. We also offered free counseling for all community members impacted .”

Identifying where shelters were established and receiving authorization to deploy VA assets to those locations required coordination with local authorities. Multiple respondents mentioned connecting with emergency management running relief efforts to describe available VA resources and detail the services available to both Veterans and the community at large. In some of the events explored in this study, the non-VA authorities were unaware of what the VA could offer while others had pre-existing relationships that allowed for more transparent understanding of how the VA could support response efforts. One respondent went on to describe how the disaster that impacted their VAMC led to additional outreach to local jurisdictions and shelter coordinating agencies (e.g., the American Red Cross) to build relationships and understanding specifically of the behavioral health services the VA could deploy, if needed and approved.

Respondents noted there were specific benefits to conducting outreach in locations where other agencies provided services to the people impacted such as shelters and Local Assistance Centers. They noted that VA staff could more easily reach Veterans to enroll them, if eligible, into VA services and offer care to those who usually used non-VA health and mental health facilities, thereby supporting local agencies by reducing potential patient loads elsewhere. Additionally, by positioning resources at a central location, VA could more readily offer community members services as an extension of their work with Veterans. One specific resource identified as useful for Veteran and community support was Mobile Vet Centers, which have the primary goal of providing social work and mental health services to Veterans. In cases where respondents mentioned this resource, they underscored that non-Veteran community members who requested services in the first days after the disaster were never turned away.

Three community profiles

Three disaster events described by respondents distinctly highlighted cases where the VA was deeply involved in the local community’s disaster behavioral health response. Each event showed VA’s integration into local response structures was facilitated by pre-existing emergency management and clinical relationships, as well as prioritization from VA leadership to engage in humanitarian missions to support the community.

Telehealth in Tinian, Mariana Islands

Prior to Super Typhoon Yutu impacting the Mariana Islands, the VA Pacific Island Healthcare System (VAPIHC) established tele-mental health services on the island of Tinian. These services were located at a non-VA owned healthcare clinic using pre-positioned VA telemedicine equipment and coordinated with the clinic director and staff. Typhoon Yutu devastated the island and led to many Tinian healthcare clinic employees losing their homes. The clinic with VA tele-mental health equipment became a temporary housing site for staff as it was undamaged by the storm. The clinic director realized that in addition to sheltering needs, employees also experienced significant trauma. However, there were limited mental health resources on the island. Once VA became aware of the need, it worked with other federal agencies to manage the logistics of implementing services that took advantage of pre-positioned VA resources.

“… it was a relationship that we had with [the US Department of Health and Human Services] (HHS) and a relationship that we had with the folks on Guam and Saipan … we have a lot of relationships going on. So, we knew that we had that telehealth equipment. We also knew that Tinian was … hit pretty hard. And that there was a lot of grief. And so I can’t say how it totally emerged, but there’s so many relationships and there’s so much communication during an emergency.”

Respondents reported it was initially challenging to identify whether VA could provide mental health services in the community and how the services would be funded. Staff at all levels of the VA worked with the Federal Emergency Management Agency (FEMA) and HHS to get official authorization as well as receive federal funding for VAPIHC to provide time limited tele-mental health interventions to clinic staff on Tinian. VAPIHC Tele-mental Health Hub coordinated with the local clinic director to inform employees about available services and utilized technology onsite to provide weekly support groups for 13 health center employees.

Director’s 50 in Orlando, Florida and the pulse nightclub shooting

The Orlando VA Healthcare System (OVAHCS) houses a unique emergency response team “The Director’s 50.” Made up of multi-disciplinary VA healthcare workers, including mental health professionals (i.e. psychologists, psychiatrists, mental health nurses), the Director’s 50 can deploy a team of up to 50 volunteers within 2 hours to areas throughout the region when authorized by the Orlando VAMC Director. As described by one respondent, the mission of the team is,

“to provide an immediate gap fill to an emergency before VA can get its assets organized and into a formal support and response role. So the team is multi-disciplinary and multi-functional with its capabilities, so that it can immediately address the needs of the emergency response until VA can formalize how it’s going to provide their support to the community.”

The Director’s 50 includes interdisciplinary clinical and service support training for all members such as triage and treatment services, mental health intervention, peer counseling, and psychological support to trauma. Through participation in community-wide exercises and drills, the Director’s 50 has built versatile capabilities and strong relationships with local emergency management agencies and area hospitals.

In response to the Pulse Nightclub Shooting, VA Central Office requested OVAHCS to deploy the Director’s 50 to provide VA resources and support the community’s response. The team activated their mass notification system to alert their nearly 100 volunteer members and quickly assembled an initial response team of about 15 clinical, mental health, and support professionals within 1 hour. Respondents noted having internal approval can speed up the process of deploying teams. In general, to distribute VA resources into the community, a federal disaster declaration is required to initiate the Robert T. Stafford Disaster Relief and Emergency Assistance Act or where the HHS Secretary has activated the National Disaster Medical System, both of which grant VA the ability to provide assistance. Therefore, respondents noted a need to balance expectations of leadership to help quickly, while also ensuring VA resources were legally allowed to be used in the response.

One thing that facilitated OVAHCS’s integration into the local response system was a pre-existing relationship with the City of Orlando’s Office of Emergency Management and the Central Florida Medical Disaster Coalition, which facilitated the Director’s 50 integration into the city’s response and allowed them to report to the victim reunification center. The team was tasked.

“to be the initial communication to the family members for those victims that actually passed away. So, 49 victims, our team was assigned to go ahead and be the initial contact to let them know that their loved ones had passed, and to begin the coordination for services, grief counseling and victim advocacy, you know, to help them prepare the initial points of piecing together their lives after being notified of such tragic events.”

Accordingly, the initial multi-disciplinary team narrowed its focus to mainly members with mental health expertise. Over the next 2 weeks, the team worked with the community, helping to manage vigils and gatherings for the public, and continuing grief counseling and mental health support for the whole community, including providing peer behavioral health support to municipal first responders. Since this act of violence targeted people who were Lesbian Gay Bisexual Transgender Queer (LGBTQ) frequenting Pulse Nightclub, not only were relatives of victims or survivors from inside the building affected, but the entire LGBTQ community felt the traumatic impact of the shooting. One respondent described the importance of providing mental health support from multiple community agencies when a disaster of this magnitude occurs,

“And they [the people who were at the shooting] truly needed a place, and this is why we were there for greater than just the 24-48 hours of initially identifying the people who was killed during the shooting, you had everyone that was inside of the club who were seeking a place where they could go and receive the care and support that they needed as well. And obviously, you know, this is something that is an endemic issue with healthcare as a whole, is the access to mental health counseling and services. So VA, as well as some other partnering mental health organizations were able to supply that need right there at the site where they were doing victim notification or victim reunification and family support. We were able to do that.”

One respondent noted a key point to remember about the Director’s 50, “they are all volunteers...And these people will go—you know, 24 hours a day, day in and day out, to execute that mission. And we have to think about team resiliency.” This included caring for team member’s well-being by rotating staff and providing and attending to the mental heath of one another. As described by one respondent,

“Because when it was all said and done, the team was very affected by what they had to do. You know, just imagine hearing—you know, overwhelming grief for every one of the 49 victims’ families that would show up. And the team took that burden on … and I will tell you, to this day, it still affects the people who went and supported that mission. And they really—those who supported that mission have a greater reverence for what we do now, as a team. So you’d never have to ask them to—whether they are going to support anything related to the Director’s 50. That comradery that’s there, they won’t let their own kind of—go into the bowels of despair like that, alone.”

Integrating into community response in Las Vegas, Nevada after the route 91 harvest festival shooting

As a large city with many national and international visitors, respondents described Las Vegas as having a very centralized emergency response structure. Relationships between VA Southern Nevada HCS (VASNHCS) and local response agencies and area hospitals were described as “tightknit” with great working relationships where organizations plan and prepare for disasters together. As one respondent put it,

“what I do know is my community. I know my community partners. I know what they have, what they don’t have, they know what I have, what I don’t have. And that’s what makes us so resilient. That’s community.”

Although located too far away from the Las Vegas Strip to actively receive injured victims when the shooting occurred at the Route 91 Harvest Music Festival, VASNHCS activated its Hospital Incident Command System so it could actively participate in the community’s response and organize efforts. A Multi-Agency Coordination Center (MACC) organized the response activities, and respondents underscored the value of both pre-existing relationships and an understanding of the county’s emergency response structure. As explained by a respondent,

“You can’t wait for your community to ask you. You have to be on the forefront and know what they need. And you only do that by knowing your community. You know, I spent probably as much time in my community as I do in my medical center. A lot of the time, it’s my own time, but again, it builds that relationship that when they’re updating their mass casualty plan, one of the people they’re calling is [me].”

This previous collaboration, as well as being present at the MACC, allowed VASNHCS to identify community needs that it could address.

As news of the shooting spread, VA leadership tasked VASNHCS with deploying staff into the community. However, it was challenging to balance the push from VA to deploy with continuing to respect established local coordination structures. VASNHCS maintained a presence within the Medical Area Surge Command of the MACC to offer resources and expertise, waiting for requests, instead of directly deploying assets outside of the established system.

In the immediate response, VASNHCS assisted with managing fatalities. It offered morgue space to the county and initiated the mass fatality plan to increase morgue capacity. This provided the county and partner hospitals space for victims until they could be processed, and families could claim them. Additionally, VASNHC offered a Psychological First Aid (PFA) team.

Initially, VASNHCS deployed their PFA team to the community’s family reunification center. The team was composed of social workers, psychologists, psychiatrists, administrators (as support staff), canteen services (for water and snacks to sustain clients and staff), and the medical center’s Chief of Staff. As the situation evolved, the MACC received requests from local agencies for psychological assistance and VASNHCS transitioned to directly integrating into area hospitals.

Three Las Vegas hospitals received the bulk of the injured or dead and recognized the need for psychological interventions with their staff. Due to their close relationships with other hospitals, one respondent explained that they were familiar with the Employee Assistance Program (EAP) at these hospitals. The respondent knew it would take time for the EAP to arrive onsite and they would most likely focus on clinical staff involved in directly treating the injured. Therefore, VASNHCS developed a three-pronged approach to complement EAP services at the receiving hospitals. Firstly, the PFA team provided what one respondent called “ trauma therapy ” to hospital staff, regardless whether they worked the night of the shooting. The assistance extended beyond clinical staff to non-clinical departments, such as environmental services/housekeeping, whose staff were also impacted through their response roles.

Respondents reported one of the reasons their response in the hospitals was so successful was that the team was multidisciplinary, allowing staff from different departments to talk to people in similar positions, which was valued by the recipients.

“So for example, we have a nurse that’s trained in trauma, psychological first aid. So they want the nurses at [the hospital with a patient surge], they want to talk to our team. They were still processing. But when we brought our nurse into the ward, they were more than willing to open up to her, because she was one of them. She was part of their tribe. So we try to match our tribe to their tribe, and that’s why we were successful.”

Secondly, the VASNHCS team worked with victims of the shooting, providing PFA and social work services. Thirdly, they integrated with family members of patients at the hospitals and provided them items that they did not otherwise have because they were visitors to Las Vegas. Examples included coordinating free transportation to and from hospitals and hotels, connecting them to local mortuary services, and providing information about how to access services when they returned home.

The PFA team ran for 24 h a day, for 7 days in those three impacted hospitals. To balance VA patient care with the community response mission, VASNHCS staff volunteered shifts outside of their normal work hours. One respondent described the overwhelming desire of VA staff to help their community.

“And while it didn’t impact our staff or our clinics, or our patients, it impacted our community. I think another thing that still amazes me to this day, was the outpour of our staff and what I mean by that is they were coming out of the woodwork to support. We had more volunteers working an eight-hour shift and then coming in [to volunteer] at five o’clock or four o’clock and working to midnight to two in the morning and not go home until four or five in the morning, and then go to work the next day, because we didn’t want to impact our patient care. And they were doing this out of their—you know, because they care. They care about the community, they care about the event, they care about the people. And then at the end of the day, you know, we had more volunteers than we had placements, because we did not want to overwhelm the health systems with all of these VA personnel.”

However, with new volunteers each shift, a key lesson learned was to have a daily team debrief. As people changed daily, a debrief provided key information and a running tally of support being provided to save time and avoid reinventing the wheel identifying contacts or systems already developed.

Another lesson was that preparedness requires ongoing maintenance. The importance of ongoing preparedness was underscored when VASNHCS realized that leading up to the shooting, they had reduced their focus on PFA training. As described by one respondent, “ We noticed that we need that continuous [psychological first aid] training, that we need continuous exercising, and it’s not an easy fit, to send a bunch of people to someone else’s hospital or an area to do that kind of service .” They also realized the first wave of personnel went into community hospitals without basic supplies they needed to provide services, including basic items such as pens, PFA guides, and informational brochures.

Three months following the shooting, the VASNHCS Emergency Manager, working with the Chief of Social Work hosted a lunch for staff who volunteered to thank them for their involvement. During that event, they realized volunteers were not only impacted by the event itself, but also by their time providing support in the community. They therefore created a forum to again gather staff who had deployed at the 6 month and 9 month marks to eat and talk about the impact of the event on the healthcare system and themselves. On the 1 year anniversary, management had a special event for the volunteers,

“we actually had people from the community that we supported coming in and they broke bread with our team and what they did was, they talked about what the impact of the VA Southern Nevada Healthcare System was going into that event, and how we helped them bridge the gap [of mental health support] that was crucial at that time, and how appreciative they were to our cause and our Clark County Office of Emergency Management gave all our staff that responded T-shirts that said Vegas Strong, because they wanted them to know that we—they appreciated the work that we did for them to support our community.”

The need for attention to the psychological well-being of individuals during and after a disaster has been well proven as disasters have been found to be associated with both short and long-term symptoms and disorders [ 6 , 7 , 8 , 9 , 10 , 38 ]. Although in some parts of the world there are federally structured plans to implement disaster behavioral health interventions, in the United States there is a patchwork system that often relies on support and resource allocation from a multitude of agencies [ 8 , 13 , 14 , 18 , 19 , 20 ]. In this study we examined the role the VA can play in a community’s disaster relief effort and highlighted the opportunity for VA to support behavioral health response focusing specifically on case studies from three disasters.

Essential to effective emergency management is an understanding of, and engagement with, available resources in a local community. This is of particular importance when considering complex individual and group needs such as behavioral health support. VA Medical Centers can be seen as challenging partners to work with because they are both a federal entity and a local healthcare facility [ 26 ]. However, in the case of Super Typhoon Yutu, the federal positioning of the VA and its connection with HHS and FEMA facilitated the deployment of VAPIHC virtual resources. The regional respondents who supported the VA disaster mission in Tinian described how preexisting relationships with federal partners facilitated authorization and funding.

Another potential challenge to incorporating the VA into response efforts is that prior to offering services, VA leadership must balance the mission of the agency with community needs, without contradicting the restrictions of the Stafford Act. In all three presented cases, VA’s behavioral health support was not formally included in a city or county response plan, and yet pre-existing relationships between key stakeholders facilitated the provision of VA behavioral health services to support identified community needs. Respondents also described participating in interagency coordinating groups, response trainings, and exercises before the disaster. These activities aided in a deeper understanding of the response structures each partner operated under and encouraged strong rapport between agencies.

Relationships between VA emergency management and local emergency management proved invaluable as VA staff understood that services should not be provided without first engaging local response coordinators. All VA facility leadership and emergency managers are required to be trained in the Incident Command System (ICS) and National Incident Management System (NIMS), which are the coordinating structures all U.S. response agencies work within [ 39 ]. As a health care provider at a national level, VHA falls within the operations section Essential Support Function (ESF) 8: Public Health and Medical Services to support the Department of Health and Human Services [ 40 ]. Local jurisdictions may also connect with VAMCs through ESF 8 representation. For example, the VA has provided significant support to communities impacted by COVID-19. As of July 8, 2020, VA provided more than 330,000 pieces of Personal Protective Equipment (PPE) in support of the Fourth Mission, as well as hand sanitizer, laundry support, test kits and testing support, and webcams for use with existing equipment to state and local facilities. In addition, VA has admitted 279 non-Veterans to VA Medical Centers because of the pandemic [ 27 ]. Much of this coordination was done through ESF 8 coordination at a local or national level.

While respondents did not go into detail about their participation in the emergency management structure, some participants described their VA’s roles within emergency operations as liaisons. Groups such as this could report to either the planning, operations, or command sections within the ICS. Group supervisors would most commonly report to the operations section chief, likely through branch directors, given that the focus of the work would be more on specialized functions as needed for tactical operations. Regardless of where they fit, their presence at emergency operations centers and command posts facilitated communication to allow for VA’s integration into incident action plans. Particularly during the response to mass casualty events in Orlando and Las Vegas, understanding the local response network and then proffering available services was essential to avoid confusion or duplication of activities. By working within the established coordination centers, VA’s efforts were effectively integrated into the greater community behavioral health response and were deployed to points of greatest need. Although a detailed understanding of the integration of VA activities into ICS structures fell outside of the scope of this work, future assessment of the integration of VA representatives into local, state, and/or regional ICS structures could help clarify roles and identify which section liaisons best support (e.g., operations, planning, logistics) [ 40 ].

VA is increasingly strengthening partnerships with agencies that provide behavioral health services to Veterans and their families who use non-VA community-based care [ 41 ]. In each case example, the primary support provided by VA to the community was the provision of behavioral health services in response to an identified need. Respondents described this as being due, in large part, to the recognition of VA’s expertise in trauma and post-trauma treatment, thereby allowing these resources to come to the forefront. While not mentioned by the respondents, an additional value that VA providers add to disaster behavioral health responses is their exposure to and understanding of the unique needs of various populations throughout their communities. In addition to ensuring care is culturally competent to the unique identity of being a Veteran, VA staff must respect the diversity of Veterans themselves. Just like the U.S. population at large, Veterans represent a range of ages, races, genders, sexual orientations, socioeconomic statuses, etc. and mental health services must be considerate of this diversity. The VA recognizes this and offers training to providers to understand and respect their patients’ unique needs [ 42 ]. Working with a variety of populations preposition VA staff to have a deeper understanding of the post-disaster needs of the wider community.

Two of the case examples described in this study especially bring to the forefront the importance of disaster behavioral health response planning and implementation teams understanding unique experiences of community members. Super Typhoon Yutu directly impacted an archipelago housing a majority Asian and/or Pacific Island population. The Pulse Nightclub shooting, while a terrorist event, was a targeted hate crime intended to inflict violence on the LGBTQ community. Disaster behavioral health interventions for these affected groups not only need to take into consideration the importance of cultural competency but also the potential of re-traumatization and distinct population mental health needs.

In the Northern Mariana Islands, while there is a mix of ethnic groups (Filipino, Chamorro, Chinese, Carolinian, Korean, Palauan, etc.), many either identify as or are categorized more broadly as Asian and/or Pacific Islanders. Although there are more than 1.4 million people who are considered Pacific Islanders living the in the U.S., there is a dearth of information on the mental health of this population [ 43 ]. Similarly, the prevalence and incidence rates of mental illness in the Mariana Islands is not well studied [ 44 ]. Some sources attribute this lack of understanding to a disproportionate underuse of mental health services [ 43 ]. However, Asian and Pacific Islanders within the U.S. and those territories affiliated with it often experience transgenerational trauma, discrimination, continued loss from colonization, historical trauma, and mental health stigma which can impact psychological wellbeing and help seeking behavior. Additionally, cultural elements (collectivism, reverence for the past, hierarchical social order, etc.) of this population are important to understand when providing behavioral health services [ 43 , 45 ]. One of the reasons respondents indicated that the VA was asked to provide assistance following Typhoon Yutu was the lack of availability of mental health services in Tinian. The established VA telehealth technology increased accessibility to behavioral practitioners from VAPIHC who most likely were experienced working with Asian and Pacific Island populations since more than 55,000 Veterans who identify as this ethnicity live in Island Areas or Hawaii [ 46 , 47 ].

The Pulse Nightclub Shooting was a terrorist driven hate crime targeting individuals who identified as LGBTQ. Members of this group often experience discrimination, stigma, and trauma throughout their lives. Discrimination and heterocentric health and mental health practices can marginalize this population and impact help seeking behavior [ 48 , 49 ]. This is of particular concern as individuals who are LGBTQ face numerous mental health disparities with a higher likelihood of experiencing depression, anxiety, substance misuse, and suicide attempts. The shooting not only targeted LGBTQ people but it also took place during Latin Pride Night meaning many of the victims and casualties were LGBTQ Latinx. The resulting psychological impacts of the Pulse Nightclub shooting on those directly impacted, people who are LGBTQ Latinx, and individuals in the wider LGBTQ community have been investigated and show experiences of trauma and impacts on perceived safety [ 50 ]. At the time of the shooting, the Orlando VAMC had established relationships with LGBTQ local mental health services and had staff knowledgeable in the needs of this community [ 51 ]. In fact, in the recent past, the VA has increased its efforts to ensure Veterans who are LGBTQ receive the highest quality patient-centered care possible [ 52 ]. Mental health services in particular have bolstered recognition of the complex needs of these Veterans [ 52 ].

All three cases demonstrate innovative ways VA can provide behavioral health support outside of their facilities, i.e., via telehealth capabilities across an ocean and into a healthcare clinic, teams of mobile units reaching directly into the community to support victims, victims’ families, and the community at large, and finally by incorporating PFA teams directly into hospitals to support staff, patients, and patients’ families. This flexibility across sites to address different needs and populations while using varying available infrastructure support, is paramount to any local jurisdiction’s ability to meet on the ground needs following a disaster. It demonstrates the variability between VAMCs and the importance of local disaster behavioral health planning teams to pre-identify resources to assess local capacity. Plans can then be developed that access and deploy the tools/skills of interdisciplinary and interagency teams. Building processes to deploy local health and mental health practitioners can lead to more rapid implementation of interventions and help ensure the diversity of the impacted community is recognized and respected. Additional studies focused on how communities develop disaster behavioral health plans could provide insight into which agencies are involved and how they collaborate. It may also be useful to assess whether and how these plans are implemented to identify best practices.

In addition to the people directly impacted by disasters, respondents underscored the importance of offering support to responders as well. There is growing recognition that health care workers are themselves front-line response workers who may be psychologically impacted when caring for others, leading to a growing emphasis on the importance of selfcare and employee wellbeing [ 39 , 40 , 41 , 42 ]. In all three case studies, behavioral health support was, at least in part, directed toward healthcare workers. In the case of Las Vegas, a respondent highlighted the advantage of having behavioral health support come from individuals who understood the culture of the population they were helping, e.g., nurses supporting nurses. Further, respondents in Las Vegas and Orlando highlighted the importance of supporting deployed behavioral health team members. They detailed actions to maintain staff well-being by having rotating shifts, encouraging peer support, and facilitating gatherings for staff to publicly thank them for their efforts and allow them to address their experiences together as a group. Understanding the needs of healthcare and behavioral health personnel and building support networks into response frameworks can help better sustain and strengthen the overall response process.

A primary limitation of this study is that interviews were conducted up to one and a half years after the disasters described, potentially impacting recall. However, multiple interviewees corroborated the information presented for each of the case studies. Another limitation is that this study focused exclusively on the experiences of VA employees fulfilling mission requirements and their description of instances where VA acted in support of the Fourth Mission. Very few of the respondents directly provided the behavioral health interventions. These perspectives could provide deeper understanding of the interventions themselves as well as the impacts they may have on practitioners. Neither community members nor coalition partners were interviewed in this study. Future research would benefit from both interviewing non-VA participants to explore additional perspectives and gain greater insight on how local jurisdictions experienced collaborating with VA representatives and exploring alternative approaches to mental health units within and outside VA to examine whether and when different approaches may be preferable.

As the largest integrated healthcare system in the United States, VA can play an important role in disaster response across the country. As recognition of VA’s expertise in behavioral health grows, particularly around trauma and post-trauma treatment, VA should be considered a strong potential partner in behavioral health responses. Local VAMC staff are part of the community in which they live and the Veterans they serve are a microcosm of the larger population of the U.S. As the respondents in this study showed, there is a deep desire by VA staff to provide support following a disaster if they are able. Anticipating potential behavioral health concerns, and having a plan to address them, can foster community disaster resilience. While these plans may be different for each jurisdiction, they can be strengthened by identifying and incorporating a range of partners. Having preexisting relationships where VA’s capabilities are known before a disaster occurs can facilitate the rapid deployment of VA resources into identified areas of community need. The case studies presented demonstrate the flexible nature of these resources. By extending knowledge about innovative ways to share behavioral health and other resources in a disaster response, communities and healthcare coalitions can be better prepared to engage collectively and rapidly mobilize essential assets to support the wellbeing of those who need it most.

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Crisis Counseling Assistance and Training Program

U.S. Department of Veterans Affairs

Veterans Health Administration

VA Medical Center

VA Pacific Island Healthcare System

VA Southern Nevada HCS

Veterans Health Administration Health Care System

Veterans Integrated Service Network

Office of Emergency Management

US Department of Health and Human Services

Federal Emergency Management Agency

Lesbian Gay Bisexual Transgender Queer

Multi-Agency Coordination Center

Psychological First Aid

Employee Assistance Program

Personal Protective Equipment

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Acknowledgements

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This work was supported by the US Department of Veterans Affairs, Veterans Health Administration, Office of Emergency Management and the Office of Population Health. The views expressed in this presentation are those of the author and do not necessarily reflect the position or policy of the VA or the US government.

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TWL and SS planned the study, including instrumentation, conducted the data analysis, and wrote the paper. RJK and FA supported the qualitative analysis and contributed to revising the paper. AD helped to plan the study and contributed to revising the manuscript. All authors have read and approved the manuscript.

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Additional file 1..

2017 Disaster Qualitative Study: Collaboration Project Interview Guide. Interview guide utilized during project’s semi-structured interviews.

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Wyte-Lake, T., Schmitz, S., Kornegay, R.J. et al. Three case studies of community behavioral health support from the US Department of Veterans Affairs after disasters. BMC Public Health 21 , 639 (2021). https://doi.org/10.1186/s12889-021-10650-x

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Social Work Practice with Carers

Case Study 2: Josef

Download the whole case study as a PDF file

Josef is 16 and lives with his mother, Dorota, who was diagnosed with Bipolar disorder seven years ago. Josef was born in England. His parents are Polish and his father sees him infrequently.

This case study looks at the impact of caring for someone with a mental health problem and of being a young carer , in particular the impact on education and future employment .

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

• One-page profile

Support plan

Transcript (.pdf, 48KB)

Name : Josef Mazur

Gender : Male

Ethnicity : White European

Download resource as a PDF file

First language : English/ Polish

Religion : Roman Catholic

Josef lives in a small town with his mother Dorota who is 39. Dorota was diagnosed with Bi-polar disorder seven years ago after she was admitted to hospital. She is currently unable to work. Josef’s father, Stefan, lives in the same town and he sees him every few weeks. Josef was born in England. His parents are Polish and he speaks Polish at home.

Josef is doing a foundation art course at college. Dorota is quite isolated because she often finds it difficult to leave the house. Dorota takes medication and had regular visits from the Community Psychiatric Nurse when she was diagnosed and support from the Community Mental Health team to sort out her finances. Josef does the shopping and collects prescriptions. He also helps with letters and forms because Dorota doesn’t understand all the English. Dorota gets worried when Josef is out. When Dorota is feeling depressed, Josef stays at home with her. When Dorota is heading for a high, she tries to take Josef to do ‘exciting stuff’ as she calls it. She also spends a lot of money and is very restless.

Josef worries about his mother’s moods. He is worried about her not being happy and concerned at the money she spends when she is in a high mood state. Josef struggles to manage his day around his mother’s demands and to sleep when she is high. Josef has not told anyone about the support he gives to his mother. He is embarrassed by some of the things she does and is teased by his friends, and he does not think of himself as a carer. Josef has recently had trouble keeping up with course work and attendance. He has been invited to a meeting with his tutor to formally review attendance and is worried he will get kicked out. Josef has some friends but he doesn’t have anyone he can confide in. His father doesn’t speak to his mother.

Josef sees some information on line about having a parent with a mental health problem. He sends a contact form to ask for information. Someone rings him and he agrees to come into the young carers’ team and talk to the social worker. You have completed the assessment form with Josef in his words and then done a support plan with him.

Back to Summary

Josef Mazur

What others like and admire about me

Good at football

Finished Arkham Asylum on expert level

What is important to me

Mum being well and happy

Seeing my dad

Being an artist

Seeing my friends

How best to support me

Tell me how to help mum better

Don’t talk down to me

Talk to me 1 to 1

Let me know who to contact if I am worried about something

Work out how I can have some time on my own so I can do my college work and see my friends

Don’t tell mum and my friends

Date chronology completed : 7 March 2016

Date chronology shared with person: 7 March 2016

Young Carers Assessment

Do you look after or care for someone at home?

The questions in this paper are designed to help you think about your caring role and what support you might need to make your life a little easier or help you make time for more fun stuff.

Please feel free to make notes, draw pictures or use the form however is best for you.

What will happen to this booklet?

This is your booklet and it is your way to tell an adult who you trust about your caring at home. This will help you and the adult find ways to make your life and your caring role easier.

The adult who works with you on your booklet might be able to help you with everything you need. If they can’t, they might know other people who can.

Our Agreement

• I will share this booklet with people if I think they can help you or your family
• I will let you know who I share this with, unless I am worried about your safety, about crime or cannot contact you
• Only I or someone from my team will share this booklet
• I will make sure this booklet is stored securely
• Some details from this booklet might be used for monitoring purposes, which is how we check that we are working with everyone we should be

Signed: ___________________________________

Young person:

• I know that this booklet might get shared with other people who can help me and my family so that I don’t have to explain it all over again
• I understand what my worker will do with this booklet and the information in it (written above).

Signed: ____________________________________

Name :             Josef Mazur Address :       1 Green Avenue, Churchville, ZZ1 Z11 Telephone:        012345 123456 Email:            [email protected] Gender :         Male Date of birth :        11.11.1999        Age: 16 School :            Green College, Churchville Ethnicity :        White European First language :        English/ Polish Religion :         Baptised Roman Catholic GP :            Dr Amp, Hill Surgery

The best way to get in touch with me is:

Do you need any support with communication?

*Josef is bilingual – English and Polish. He speaks English at school and with his friends, and Polish at home. Josef was happy to have this assessment in English, however, another time he may want to have a Polish interpreter. It will be important to ensure that Josef is able to use the words he feels best express himself.

About the person/ people I care for

I look after my mum who has bipolar disorder. Mum doesn’t work and doesn’t really leave the house unless she is heading for a high. When Mum is sad she just stays at home. When she is getting hyper then she wants to do exciting stuff and she spends lots of money and she doesn’t sleep.

Do you wish you knew more about their illness?

Do you live with the person you care for?

What I do as a carer It depends on if my mum has a bad day or not. When she is depressed she likes me to stay home with her and when she is getting hyper then she wants me to go out with her. If she has new meds then I like to be around. Mum doesn’t understand English very well (she is from Poland) so I do all the letters. I help out at home and help her with getting her medication.

Tell us what an average week is like for you, what kind of things do you usually do?

Monday to Friday

Get up, get breakfast, make sure mum has her pills, tell her to get up and remind her if she’s got something to do.

If mum hasn’t been to bed then encourage her to sleep a bit and set an alarm

College – keep phone on in case mum needs to call – she usually does to ask me to get something or check when I’m coming home

Go home – go to shops on the way

Remind mum about tablets, make tea and pudding for both of us as well as cleaning the house and fitting tea in-between, ironing, hoovering, hanging out and bringing in washing

Do college work when mum goes to bed if not too tired

More chores

Do proper shop

Get prescription

See my friends, do college work

Sunday – do paper round

Physical things I do….

(for example cooking, cleaning, medication, shopping, dressing, lifting, carrying, caring in the night, making doctors appointments, bathing, paying bills, caring for brothers & sisters)

I do all the housework and shopping and cooking and get medication

Things I find difficult

Emotional support I provide…. (please tell us about the things you do to support the person you care for with their feelings; this might include, reassuring them, stopping them from getting angry, looking after them if they have been drinking alcohol or taking drugs, keeping an eye on them, helping them to relax)

If mum is stressed I stay with her

If mum is depressed I have to keep things calm and try to lighten the mood

She likes me to be around

When mum is heading for a high wants to go to theme parks or book holidays and we can’t afford it

I worry that mum might end up in hospital again

Mum gets cross if I go out

Other support

Please tell us about any other support the person you care for already has in place like a doctor or nurse, or other family or friends.

The GP sees mum sometimes. She has a nurse who she can call if things get bad.

Mum’s medication comes from Morrison’s pharmacy.

Dad lives nearby but he doesn’t talk to mum.

Mum doesn’t really have any friends.

Do you ever have to stop the person you care for from trying to harm themselves or others?

Some things I need help with

Sorting out bills and having more time for myself

I would like mum to have more support and to have some friends and things to do

On a normal week, what are the best bits? What do you enjoy the most? (eg, seeing friends, playing sports, your favourite lessons at school)

Seeing friends

When mum is up and smiling

Playing football

On a normal week, what are the worst bits? What do you enjoy the least? (eg cleaning up, particular lessons at school, things you find boring or upsetting)

Nagging mum to get up

Reading letters

Missing class

Mum shouting

Friends laugh because I have to go home but they don’t have to do anything

What things do you like to do in your spare time?

Do you feel you have enough time to spend with your friends or family doing things you enjoy, most weeks?

Do you have enough time for yourself to do the things you enjoy, most weeks?  (for example, spending time with friends, hobbies, sports)

Are there things that you would like to do, but can’t because of your role as a carer?

Can you say what some of these things are?

See friends after college

Go out at the weekend

Time to myself at home

It can feel a bit lonely

I’d like my mum to be like a normal mum

School/ College Do you think being your caring role makes school/college more difficult for you in any way?

If you ticked YES, please tell us what things are made difficult and what things might help you.

Things I find difficult at school/ college

Sometimes I get stressed about college and end up doing college work really late at night – I get a bit angry when I’m stressed

I don’t get all my college work done and I miss days

I am tired a lot of the time

Things I need help with…

I am really worried they will kick me out because I am behind and I miss class. I have to meet my tutor about it.

Do your teachers know about your caring role?

Are you happy for your teachers and other staff at school/college to know about your caring role?

Do you think that being a carer will make it more difficult for you to find or keep a job?

Why do you think being a carer is/ will make finding a job more difficult?

I haven’t thought about it. I don’t know if I’ll be able to finish my course and do art and then I won’t be able to be an artist.

Who will look after mum?

What would make it easier for you to find a job after school/college?

Finishing my course

Mum being ok

How I feel about life…

Do you feel confident both in school and outside of school?

Somewhere in the middle

In your life in general, how happy do you feel?

Quite unhappy

In your life in general, how safe do you feel?

How healthy do you feel at the moment?

Quite healthy

Being heard

Do you think people listen to what you are saying and how you are feeling?

If you said no, can you tell us who you feel isn’t listening or understanding you sometimes   (eg, you parents, your teachers, your friends, professionals)

I haven’t told anyone

I can’t talk to mum

My friends laugh at me because I don’t go out

Do you think you are included in important decisions about you and your life? (eg, where you live, where you go to school etc)

Do you think that you’re free to make your own choices about what you do and who you spend your time with?

Not often enough

Is there anybody who knows about the caring you’re doing at the moment?

If so, who?

I told dad but he can’t do anything

Would you like someone to talk to?

Supporting me Some things that would make my life easier, help me with my caring or make me feel better

I don’t know

Fix mum’s brain

People to help me if I’m worried and they can do something about it

Not getting kicked out of college

Free time – time on my own to calm down and do work or have time to myself

Time to go out with my friends

Get some friends for mum

I don’t want my mum to get into trouble

Who can I turn to for advice or support?

I would like to be able to talk to someone without mum or friends knowing

Would you like a break from your caring role?

How easy is it to see a Doctor if you need to?

To be used by social care assessors to consider and record measures which can be taken to assist the carer with their caring role to reduce the significant impact of any needs. This should include networks of support, community services and the persons own strengths. To be eligible the carer must have significant difficulty achieving 1 or more outcomes without support; it is the assessors’ professional judgement that unless this need is met there will be a significant impact on the carer’s wellbeing. Social care funding will only be made available to meet eligible outcomes that cannot be met in any other way, i.e. social care funding is only available to meet unmet eligible needs.

Date assessment completed :            7 March 2016

Social care assessor conclusion

Josef provides daily support to his mum, Dorota, who was diagnosed with bipolar disorder seven years ago. Josef helps Dorota with managing correspondence, medication and all household tasks including shopping. When Dorota has a low mood, Josef provides support and encouragement to get up. When Dorota has a high mood, Josef helps to calm her and prevent her spending lots of money. Josef reports that Dorota has some input from community health services but there is no other support. Josef’s dad is not involved though Josef sees him sometimes, and there are no friends who can support Dorota.

Josef is a great support to his mum and is a loving son. He wants to make sure his mum is ok. However, caring for his mum is impacting: on Josef’s health because he is tired and stressed; on his emotional wellbeing as he can get angry and anxious; on his relationship with his mother and his friends; and on his education. Josef is at risk of leaving college. Josef wants to be able to support his mum better. He also needs time for himself, to develop and to relax, and to plan his future.

Eligibility decision :                Eligible for support

What’s happening next :            Create support plan

Completed by Name : Role : Organisation :

Name: Josef Mazur

Address 1 Green Avenue, Churchville, ZZ1 Z11

Telephone 012345 123456

Email [email protected]

Gender: Male

Date of birth: 11.11.1999 Age: 16

School Green College, Churchville

Ethnicity White European

First language English/ Polish

Religion Baptised Roman Catholic

GP Dr Amp, Hill Surgery

My relationship to this person son

Name Dorota Mazur

Gender Female

Date of birth 12.6.79 Age 36

First language Polish

Religion Roman Catholic

Support plan completed by

Organisation

Date of support plan: 7 March 2016

This plan will be reviewed on: 7 September 2016

Signing this form

Please ensure you read the statement below in bold, then sign and date the form.

I understand that completing this form will lead to a computer record being made which will be treated confidentially. The council will hold this information for the purpose of providing information, advice and support to meet my needs. To be able to do this the information may be shared with relevant NHS Agencies and providers of carers’ services. This will also help reduce the number of times I am asked for the same information.

If I have given details about someone else, I will make sure that they know about this.

I understand that the information I provide on this form will only be shared as allowed by the Data Protection Act.

Josef has given consent to share this support plan with the CPN but does not want it to be shared with his mum.

Mental health

The social work role with carers in adult mental health services has been described as: intervening and showing professional leadership and skill in situations characterised by high levels of social, family and interpersonal complexity, risk and ambiguity (Allen 2014). Social work with carers of people with mental health needs, is dependent on good practice with the Mental Capacity Act where practitioner knowledge and understanding has been found to be variable (Iliffe et al 2015).

• Carers Trust (2015) Mental Health Act 1983 – Revised Code of Practice Briefing
• Carers Trust (2013) The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England
• Mind, Talking about mental health
• Tool 1: Triangle of care: self-assessment for mental health professionals – Carers Trust (2013) The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England Second Edition (page 23 Self-assessment tool for organisations)

Mental capacity, confidentiality and consent

Social work with carers of people with mental health needs, is dependent on good practice with the Mental Capacity Act where practitioner knowledge and understanding has been found to be variable (Iliffe et al 2015). Research highlights important issues about involvement, consent and confidentiality in working with carers (RiPfA 2016, SCIE 2015, Mental Welfare Commission for Scotland 2013).

• Beddow, A., Cooper, M., Morriss, L., (2015) A CPD curriculum guide for social workers on the application of the Mental Capacity Act 2005 . Department of Health
• Bogg, D. and Chamberlain, S. (2015) Mental Capacity Act 2005 in Practice Learning Materials for Adult Social Workers . Department of Health
• Department of Health (2015) Best Interest Assessor Capabilities , The College of Social Work
• RiPfA Good Decision Making Practitioner Handbook
• SCIE Mental Capacity Act resource  
• Tool 2: Making good decisions, capacity tool (page 70-71 in good decision making handbook)

Young carers

A young carer is defined as a person under 18 who provides or intends to provide care for another person. The concept of care includes practical or emotional support. It is the case that this definition excludes children providing care as part of contracted work or as voluntary work. However, the local authority can ignore this and carry out a young carer’s need assessment if they think it would be appropriate. Young carers, young adult carers and their families now have stronger rights to be identified, offered information, receive an assessment and be supported using a whole-family approach (Carers Trust 2015).

• SCIE (2015) Young carer transition in practice under the Care Act 2014
• SCIE (2015) Care Act: Transition from children’s to adult services – early and comprehensive identification
• Carers Trust (2015) Rights for young carers and young adult carers in the Children and Families Act
• Carers Trust (2015) Know your Rights: Support for Young Carers and Young Adult Carers in England
• The Children’s Society (2015) Hidden from view: The experiences of young carers in England  
• DfE (2011) Improving support for young carers – family focused approaches
• ADASS and ADCS (2015) No wrong doors: working together to support young carers and their families
• Carers Trust, Supporting Young Carers and their Families: Examples of Practice
• Refugee toolkit webpage: Children and informal interpreting
• SCIE (2010) Supporting carers: the cared for person
• SCIE (2015) Care Act Transition from children’s to adults’ services – Video diaries
• Tool 3: Young carers’ rights – The Children’s Society (2014) The Know Your Rights pack for young carers in England!
• Tool 4: Vision and principles for adults’ and children’s services to work together

Young carers of parents with mental health problems

The Care Act places a duty on local authorities to assess young carers before they turn 18, so that they have the information they need to plan for their future. This is referred to as a transition assessment. Guidance, advocating a whole family approach, is available to social workers (LGA 2015, SCIE 2015, ADASS/ADCS 2011).

• SCIE (2012) At a glance 55: Think child, think parent, think family: Putting it into practice
• SCIE (2008) Research briefing 24: Experiences of children and young people caring for a parent with a mental health problem
• SCIE (2008) SCIE Research briefing 29: Black and minority ethnic parents with mental health problems and their children
• Carers Trust (2015) The Triangle of Care for Young Carers and Young Adult Carers: A Guide for Mental Health Professionals
• ADASS and ADCS (2011) Working together to improve outcomes for young carers in families affected by enduring parental mental illness or substance misuse
• Ofsted (2013) What about the children? Joint working between adult and children’s services when parents or carers have mental ill health and/or drug and alcohol problems
• Mental health foundation (2010) MyCare The challenges facing young carers of parents with a severe mental illness
• Children’s Commissioner (2012) Silent voices: supporting children and young people affected by parental alcohol misuse
• SCIE, Parental mental health and child welfare – a young person’s story

Tool 5: Family model for assessment

• Tool 6: Engaging young carers of parents with mental health problems or substance misuse

Young carers and education/ employment

Transition moments are highlighted in the research across the life course (Blythe 2010, Grant et al 2010). Complex transitions required smooth transfers, adequate support and dedicated professionals (Petch 2010). Understanding transition theory remains essential in social work practice (Crawford and Walker 2010). Partnership building expertise used by practitioners was seen as particular pertinent to transition for a young carer (Heyman 2013).

• TLAP (2013) Making it real for young carers
• Learning and Work Institute (2018) Barriers to employment for young adult carers
• Carers Trust (2014) Young Adult Carers at College and University
• Carers Trust (2013) Young Adult Carers at School: Experiences and Perceptions of Caring and Education
• Carers Trust (2014) Young Adult Carers and Employment
• Family Action (2012) BE BOTHERED! Making Education Count for Young Carers

Download The Triangle of Care as a PDF file

The Triangle of Care Carers Included: A Guide to Best Practice in Mental Health Care in England

The Triangle of Care is a therapeutic alliance between service user, staff member and carer that promotes safety, supports recovery and sustains wellbeing…

Download the Capacity Tool as a PDF file

Capacity Tool Good decision-making Practitioners’ Handbook

The Capacity tool on page 71 has been developed to take into account the lessons from research and the case CC v KK. In particular:

• that capacity assessors often do not clearly present the available options (especially those they find undesirable) to the person being assessed
• that capacity assessors often do not explore and enable a person’s own understanding and perception of the risks and advantages of different options
• that capacity assessors often do not reflect upon the extent to which their ‘protection imperative’ has influenced an assessment, which may lead them to conclude that a person’s tolerance of risks is evidence of incapacity.

The tool allows you to follow steps to ensure you support people as far as possible to make their own decisions and that you record what you have done.

Download Know your rights as a PDF file

Tool 3: Know Your Rights Young Carers in Focus

This pack aims to make you aware of your rights – your human rights, your legal rights, and your rights to access things like benefits, support and advice.

Need to know where to find things out in a hurry? Our pack has lots of links to useful and interesting resources that can help you – and help raise awareness  about young carers’ issues!

Know Your Rights has been produced by Young Carers in Focus (YCiF), and funded by the Big Lottery Fund.

Tool 4: Vision and principles for adults’ and children’s services to work together to support young carers

Download the tool   as a PDF file

You can use this tool to consider how well adults’ and children’s services work together, and how to improve this.

Click on the diagram to open full size in a new window

This is based on ADASS and ADCS (2015) No wrong doors : working together to support young carers and their families

Download the tool as a PDF file

You can use this tool to help you consider the whole family in an assessment or review.

What are the risk, stressors and vulnerability factors?

How is the child/ young person’s wellbeing affected?

How is the adult’s wellbeing affected?

What are the protective factors and available resources?

This tool is based on SCIE (2009) Think child, think parent, think family: a guide to parental mental health and child welfare

Tool 6: Engaging young carers

Young carers have told us these ten things are important. So we will do them.

• Introduce yourself. Tell us who you are and what your job is.
• Give us as much information as you can.
• Tell us what is wrong with our parents.
• Tell us what is going to happen next.
• Talk to us and listen to us. Remember it is not hard to speak to us we are not aliens.
• Ask us what we know and what we think. We live with our parents; we know how they have been behaving.
• Tell us it is not our fault. We can feel guilty if our mum or dad is ill. We need to know we are not to blame.
• Please don’t ignore us. Remember we are part of the family and we live there too.
• Keep on talking to us and keeping us informed. We need to know what is happening.
• Tell us if there is anyone we can talk to. Maybe it could be you.

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Article Contents

Canada’s maid legislation, biopsychosocial assessment, family work, period of reflection—planning for a good death, providing support on the day of the death.

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Social Work Practice with Medical Assistance in Dying: A Case Study

• Article contents
• Figures & tables
• Supplementary Data

Kelsey Antifaeff, Social Work Practice with Medical Assistance in Dying: A Case Study, Health & Social Work , Volume 44, Issue 3, August 2019, Pages 185–192, https://doi.org/10.1093/hsw/hlz002

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Medical assistance in dying (MAiD) recently became legal in Canada, and social workers have an integral role providing psychosocial care to those considering this end-of-life care option. Research has found that most requests for assisted dying have a psychosocial dimension. Social workers are uniquely equipped to understand the personal and contextual factors informing the choice for MAiD and offer supports. A case example highlights practice opportunities for social workers throughout the MAiD process.

Health care social workers have a long history of providing psychosocial support to the dying. Rusnack, Schaefer, and Moxley (1988) aptly described social work’s role as orchestrating a “safe passage” for the terminally ill through the final stages of life. This practice metaphor emphasizes the importance of the time leading up to death and the significant role for social work during that period. This image is particularly useful now as social workers consider how to provide optimal psychosocial care to clients who contemplate, and pursue, medical assistance in dying (MAiD). How can social workers’ assessments and interventions facilitate a safe passage for clients pursuing this end-of-life care option? How can social workers support clients to chart their own passage? A case example highlights the importance of allowing the psychosocial needs of each client to define what safe passage means to them, and the critical role of social work in this process.

On June 17, 2016, the Parliament of Canada passed Bill C-14 specifying the conditions under which assisted death could be legally provided ( Parliament of Canada, 2016 ). “MAiD” is the term used in Canada, but in other jurisdictions in Europe and the United States it is known as assisted suicide, physician-assisted death, and aid in dying. There are two types of assisted deaths legally available to Canadians, and each requires a physician or nurse practitioner to either (a) directly administer a substance that causes death, such as an injection of a drug; or (b) provide or prescribe a drug that the eligible person takes to bring about his or her own death. To date, only a tiny percentage of Canadians chose to self-administer; clinician-administered deaths are the overwhelming majority ( Government of Canada, 2018b ).

Be eligible for health services funded by the federal government, or a province or territory (generally, visitors to Canada are not eligible for MAiD);

Be at least 18 years old and mentally competent. This means being capable of making health care decisions for themselves;

Make a voluntary request for MAiD that is not the result of outside pressure or influence;

Give informed consent to receive MAiD.

○ Having a serious illness, disease or disability;

○ Being in an advanced state of decline that cannot be reversed;

○ Experiencing unbearable physical or mental suffering from their illness, disease, disability or state of decline that cannot be relieved under conditions that they consider acceptable; and

○ Being at a point where their natural death has become reasonably foreseeable.

An assessment by a physician or nurse practitioner is carried out to determine eligibility for MAiD. The law requires a second assessment by a separate doctor or nurse practitioner to confirm eligibility. A 10-day period of reflection is mandated between the date when the client signs the request and the provision of MAiD. The client may withdraw his or her request at any time in the process ( Government of Canada, 2018a ).

Social workers are not involved in the determination of eligibility for MAiD. However, the assessor/prescriber may review the psychosocial assessment during the MAiD assessment process. As the client pursues the possibility of MAiD, social workers collaborate with the Assisted Dying Program (the typical access point to MAiD in health centers in Canada) ( Li et al., 2017 ) to provide psychosocial context to the MAiD request, contribute to the care plan, and provide psychosocial support to the individual and his or her family.

I have changed some facts of the case to protect patient confidentiality and anonymity. Jackie (a pseudonym) was a 55-year-old woman who had been living with advanced cancer for six years. Her support network consisted of her spouse, her 30-year-old son, her parents, two sisters, and a wide network of friends. Jackie was admitted to hospital due to anasarca, a widespread swelling of the skin that signaled end-stage heart failure related to the cancer. Her pain was worsening, and mobilizing was becoming increasingly difficult due to swelling. The palliative care team met with her to assess her symptoms, offer analgesic options, and discuss her goals of care. They confirmed a prognosis of less than three months and Jackie changed her code status to DNR (do not resuscitate). Jackie’s pain greatly improved within a couple of days, thanks to the new analgesic regime. Once her symptoms were under control, Jackie carefully considered her end-of-life options and decided to initiate the assessment process for MAiD. The Assisted Dying Program was contacted to initiate the assessment process. As her social worker, my initial role was to meet with her to conduct a biopsychosocial assessment.

When a client voices a desire to pursue an assisted death, the goal of the social worker’s biopsychosocial assessment is to explore the context (physical, emotional, social, economic, spiritual) of the MAiD request ( Canadian Association of Psychosocial Oncology [CAPO], 2017 ). Although a social worker’s assessment is not a requirement of MAiD eligibility, it is beneficial for identification of any unmet needs that may contribute to a client’s decision to pursue MAiD (that is, a lack of supportive resources) while also screening for coercive factors relating to social or financial circumstances ( Canadian Association of Social Workers, 2016 ). Conducting the biopsychosocial assessment early in the MAiD process allows ample time to explore identified issues and offer interventions to address unmet needs.

For example, if a client identifies feeling distress about being a burden to her or his loved ones, social workers can encourage and support conversations between the client and her or his caregivers to share fears, comfort each other, and broker additional supports to reduce caregiver burden. If clients can be reassured that they are not a burden, the decision to pursue MAiD may be viewed in a different light ( Csikai, 1999 ; Miller, Hedlund, & Soule, 2006 ). The purpose of these conversations is not to dissuade clients from choosing MAiD but, rather, to ensure that any unmet psychosocial needs are not overlooked. Just as clients should have access to palliative care services to ensure their physical suffering is assessed and addressed, they should also have access to social work services to assess and address psychosocial suffering.

During our first meeting, Jackie described her life as full of adventure, traveling, gardening, creating art, and socializing with a robust support network. She spoke of living in the shadow of cancer for six years with the constant awareness of her own mortality. Her sole experience with death was many years ago when she had visited a friend dying of cancer. She had become unrecognizable from the physical effects of the disease and was no longer able to communicate. This experience deeply affected Jackie’s views on death and dying. When MAiD became legal, she felt relieved that she could choose to die in a different way. For her the question was not if to choose MAiD, but when .

Exploring clients’ beliefs and experiences around the dying process gives social workers insight into how clients’ lived experiences influence their hopes and fears about their own death ( Miller, Hedlund, & Murphy, 1998 ). For Jackie, MAiD was a way to circumscribe the loss of dignity and personhood that she saw her friend endure. Through the assessment I began to understand her fears about dying, which included poor symptom management. Palliative care aims not only to relieve symptoms, but also to reduce the fear and uncertainty of the dying process. All these important needs should be met while a client contemplates MAiD. As such, I encouraged Jackie to remain engaged with the palliative care team throughout the MAiD assessment process.

The biopsychosocial assessment for clients pursuing MAiD also explores their quality of life and how it relates to their suffering ( Miller et al., 1998 ). A key component to Jackie’s quality of life was being able to mobilize independently, which the anasarca was starting to compromise. She also required more pain medication, which interfered with her ability to actively engage in conversations with loved ones. In addition to these changes, she also described an emerging feeling of dread as she faced weeks of saying good-bye, not just to her loved ones, but also to experiences that she knew she would only able to do “one last time.” She described this feeling poetically: “It feels as though I am standing on a beach and there is a tsunami coming. Everyone else gets to run from the shore, but I have to stay there and face it.” She described this unexpected existential suffering as overwhelming and unending.

Advanced skills in rapport building and communication are necessary for these often-profound conversations. Harlos (2017) described this as “sitting down and leaning in” with clients considering MAiD to provide a safe conversational space. From this safety, the client can discuss any distress he or she may be experiencing related to fears, sadness, anger, regrets, and life’s meaning and purpose. My role as Jackie’s social worker was to provide a space for her to explore her thoughts and feelings while also considering means of addressing these concerns through psychosocial and spiritual support. Exploring what gives the client spiritual comfort is an important dignity-conserving practice at the end of life, as turning toward or finding comfort within one’s religious or spiritual beliefs helps to bolster or maintain a sense of dignity ( Chochinov, 2002 ). The social worker should ask the client if there is a certain religious or spiritual community he or she would like to be connected with; some health centers have spiritual care practitioners available to refer to. Social workers can support clients to participate in spiritual or cultural-based practices by ensuring they have the physical space, privacy, and materials (that is: religious texts, sacred objects) that the client identifies as important ( Chochinov, 2002 ). Exploring the client’s relationship to spirituality across his or her life span can be a useful assessment approach, as what one is taught as a child about God, mortality, and the afterlife often differs greatly from one’s interpretation as an adult ( Miller et al., 1998 ). This also gives the social worker insight into how the individual’s values and beliefs interface with his or her decision to choose an assisted death. Does it pose an ethical dilemma?

For Jackie, it did not. She had been an atheist for her whole life. Her parents were not religious, and they never imposed any belief system on her. She was confident that they would support her decision to pursue an assisted death. Spiritual comfort for her meant being near her family and her dog and sharing good memories.

Although Jackie declined spiritual care support, she was receptive to regular one-on-one counseling with me. Through these meetings she clarified that her distress was centered on the lonely experience of dying and feeling left behind. She needed a confidential place to process these thoughts and emotions to gain clarity. I maintained a stance of neutrality toward MAiD in an effort to support Jackie’s self-determination, as I was prepared to advocate for whatever end-of-life plan she chose. Throughout our conversations it was clear that she was not lacking supports or resources that would alter her decision to pursue MAiD, nor was she being coerced. Rather, she did not want the memory of her death to overwrite the memories of the “real her” for her loved ones. She wanted to exit life quickly, painlessly, and with dignity. She was confident that MAiD would allow her the kind of death she wanted.

Exploring the impact of the decision to pursue an assisted death on the client’s family and community is an integral part of the social work assessment process as it considers the family system, family roles, the impact of the illness, end-of-life decision-making processes, and family beliefs and values ( Miller et al., 1998 ). Who are the most important people in the client’s life? Are they aware of the client’s decision to pursue MAiD? Who supports it and who does not?

During her cancer journey, Jackie had shared with her loved ones that she hoped to have an assisted death. However, Jackie recognized that her decision to go through with an assisted death while her quality of life appeared “still good” would come as a surprise. She could mobilize with equipment and was able to enjoy food, drink, and the company of others. She did not appear to be dying, in the conventional sense, and she knew that her family would expect to have more time with her. She was ready to die but she worried about their ability to see it from her perspective.

Disagreements about the decision to pursue assisted dying have been found to increase complicated bereavement ( Srinivasan, 2009 ). The role for social work is essential when these conflicts arise, as practitioners bring therapeutic communication skills that support a dialogue between clients and family members. The relational work that clients engage in leading up to the end of life is important not only for the clients, but also for their loved ones. It maximizes opportunities for positive exchanges that can ultimately promote feelings of peace ( Steinhauser et al., 2006 ). Although differing perspectives might never be resolved, the opportunity to talk about these differences in a respectful manner can ease grief for everyone involved ( Srinivasan, 2009 ).

I suggested meeting with both Jackie and her spouse, Shawn, to discuss Jackie’s decision. Jackie was articulate in sharing her suffering with Shawn; she recognized he wanted more time but asserted that her quality of life had diminished beyond what she found acceptable. Shawn shared his feelings that he was not ready to “let her go” but acknowledged this was about his need for “one more dinner or one more walk on the beach.” Jackie shared the mental anguish of facing all the “one more times” and her need to limit those experiences. I validated the profound grief they were both experiencing and encouraged them to actively listen to one another’s needs. We also brainstormed how they could dedicate space in Jackie’s remaining days to have the quality time that was important to them both. At the close of the conversation, they embraced and reported feeling closer as a result of the discussion. Once Jackie felt the support of her partner, she felt prepared to share her decision with their son and the rest of her family. We spent time discussing how they might navigate individual reactions, and ultimately Jackie and Shawn felt confident to inform everyone without my attendance. During their conversations the family recognized they could not put their desire for more time ahead of Jackie’s suffering. Despite their grief they supported her end-of-life plan.

MAiD legislation mandates a 10-day period of reflection that is meant for clients to carefully consider their decision. For individuals who decide to pursue MAiD as soon as possible, like Jackie, the period of reflection marks their final stage in life. This waiting period provided an opportunity to seek direction from Jackie about how she envisioned her death: Who did she want in attendance? Did she want any specific music playing? Was there a certain outfit that she wanted to wear? Were there any other personal requests for the environment? Jackie’s ability to voice these preferences allowed her to further control the circumstances of her death. An important part of my role was advocating for, and facilitating, an end-of-life environment that met her needs.

Jackie decided that she wanted to die in the hospital with her family by her side, which included Shawn, her son, her parents, two sisters, a couple of friends, and her dog. She wanted to extend the invitation to everyone, but she also wanted to ensure that no one felt obligated to attend if they were uncomfortable. She preferred to send an e-mail to everyone and asked me to help her write it. Although I had never written an invitation to a death before, working alongside Jackie to find the right words to share her end-of-life plan was another unique opportunity to be an ally in this process.

During the period of reflection Jackie also decided to host her own wake. In keeping with her goal to die as she had lived, she was eager to host one last party in her home. Jackie and I strategized how she could best enjoy the evening without being inundated with other people’s emotional good-byes. I suggested she find a way to be upfront with her guests about her needs. We drafted an e-mail to send to her guests that included the clause “no good-byes please.” I worked with her care team to arrange a pass from the hospital and liaised with the pharmacy to ensure that she had enough pain medication for the evening. Before Jackie left, she shared her anxieties about the evening: What if the evening became too somber to bear? What if someone tried to talk her out of her decision to die? What if she had a pain crisis? I acknowledged the significance of the evening and validated her concerns before we turned our attention to problem solving. Shawn and their son could be her allies for the night, and Jackie could inconspicuously signal to them if she needed help to get out of any uncomfortable conversations or assistance with pain management. I asked the nurse to review her medication options if a pain crisis occurred so that she had options for short-term relief while traveling back to the hospital. We also explored who among the guests would most likely try to challenge her decision and we rehearsed a response that would efficiently shut down any discussion (“This isn’t something I’m going to discuss with you”). We also scheduled a time for the following day to debrief the evening’s events.

The next day Jackie reported that it had been a wonderful night, with a full house of friends and family that culminated in a backyard bonfire. She reported no tearful good-byes or debates about her choice. It was exactly the kind of celebration she had hoped for. She reflected that the preparation we had done the day before had made a big difference in her ability to relax and enjoy the evening. Thinking through potential problems in advance meant that she was able to direct the protective measures put into place, and Shawn and their son were relieved to have clear directions from Jackie when she needed help. Jackie got to control what she needed and when. It was another way that I could support Jackie to chart her own safe passage.

Bidding farewell to someone who faces a known time of death is an unfamiliar emotional task that many people struggle with. Furthermore, there is tremendous variation among families and cultures in the expression of grief and saying good-bye ( Stroebe & Schut, 1998 ). On the day of the death, social workers have an important role in providing psychosocial support to clients and their loved ones to ensure that their needs are met on this difficult day.

Jackie chose her day of death to immediately follow the mandated 10-day period of reflection, as she did not want to risk experiencing any further decline in her health. In consultation with the MAiD assessor/provider, Jackie chose the time of her death shortly after sunset so that she could enjoy a final dinner of fish and chips with her loved ones.

I met with her in the morning to review the plan she had previously made and confirmed there were no changes. I designated a private lounge outside of Jackie’s room for the family to use throughout the day. This allowed Jackie to use her room for private conversations, as needed, without the rest of the family waiting in the hallway. Providing families with a safe space to gather can increase comfort and ensure that they have a private place to talk among themselves ( Slatyer, Pienaar, Williams, Proctor, & Hewitt, 2015 ).

Family meetings are widely recognized as an important part of social work practice in end of life ( Fineberg, 2010 ; Hudson, Quinn, O’Hanlon, & Aranda, 2008 ). In the hours leading up to Jackie’s death, I arranged a family meeting to provide her loved ones the opportunity to share emotions, ask questions, and raise concerns. A nurse educator from the Assisted Dying Program also attended to review the MAiD medication administration process and Jackie’s family welcomed the opportunity to ask questions, which increased their feelings of preparedness. Preparedness involves providing family with reliable information and demonstrating empathetic behaviors, such as acknowledging caregivers’ emotions, listening, providing emotional support, and eliciting questions ( Hebert, Copeland, Schulz, Amato, & Arnold, 2008 ). Feeling adequately prepared for a loved one’s death has been found to positively affect bereavement outcomes for families who experience MAiD ( Ganzini, Goy, Dobscha, & Prigerson, 2009 ; Srinivasan, 2009 ; Swarte, van der Lee, van der Bom, van den Bout, & Heintz, 2003 ).

The group also shared their challenges in disclosing Jackie’s choice for MAiD to their wider social network. I facilitated a dialogue wherein the group shared the discomfort of navigating societal perceptions about Jackie’s choice and brainstormed strategies for talking about it in the future. The decision to pursue assisted dying can be considered controversial, and individuals and their loved ones may feel stigma associated with the choice. As a result, many families may not feel free to discuss their experience with MAiD following the death of their loved one ( Miller et al., 2006 ). Social workers can use family meetings to explore the perception of stigma regarding the client’s choice of MAiD, review strategies on how to manage it, and potentially increase feelings of solidarity within the family system ( Miller et al., 1998 ; Werth, 1999 ).

Providing an opportunity for those attending the death to meet is instrumental for social workers to understand the needs of the group and create plans for support. For example, Jackie’s son articulated to the group not wanting to be touched during or after his mom’s death. The ability to set this boundary beforehand meant that he knew his needs would be respected during this difficult moment. A friend of Jackie’s expressed worry that she would not be able to tolerate being in the room during Jackie’s death. We planned for her to be situated by the door so she could leave the room quickly and unobtrusively if necessary. Given the later hour in the day, additional psychosocial support was limited (that is, another social worker or spiritual care) so I relied on an experienced nurse to be available outside the room to offer additional support.

In the moments leading up to Jackie’s death, I checked in with her to ensure that everything was unfolding the way she had planned. She squeezed my hand, thanked me for my support, and asked me to gather everyone in the room because she was ready. As per her plan, her parents stood at the head of her bed, with her sisters at the foot. Her son and Shawn lay in bed with her, and her dog curled up on a nearby chair. She took her final moments to thank her loved ones for supporting her throughout her life and now in death. She provided consent one final time to the MAiD assessor/provider, who was a physician, and the medication was started through Jackie’s existing IV. As it began to take effect, she drifted off to sleep softly singing a favorite song. Within a few minutes she had stopped breathing. Once all the medications had been completely administered, the physician listened with a stethoscope to confirm the time of death. I encouraged the group to take as much time as they needed with Jackie’s body and informed them that I would be outside the room if they needed anything.

When they left, Shawn hugged me and thanked me for helping Jackie have the kind of death that she wanted. In the days following her death, I phoned Jackie’s family to offer referrals to community-based bereavement supports. They all reported feeling at peace with Jackie’s decision and grateful that her death was exactly as she had intended.

What constitutes a safe passage for clients pursuing MAiD? For Jackie, it was providing her a space to explore her suffering and gain clarity about her decision. In doing so, her sense of isolation was reduced through individual and couples counseling. This ultimately helped her communicate her wishes to her larger support network and work with them to cocreate a holistic end-of-life plan that met her needs. The role of social work was integral to explore the impact of her decision on her family and facilitate conversations in which tensions could be resolved. Family meetings provided an opportunity to improve death preparedness, including discussing strategies to cope with societal stigma about MAiD. Social work’s involvement in the final weeks of Jackie’s life improved everyone’s ability to articulate their needs, speak the unspeakable, and celebrate her life in the way that was meaningful to her. Ultimately, my role was to support Jackie as she chartered her own safe passage. It is paramount that social workers are guided by the unique psychosocial needs of each client as they define what a safe passage means to them.

This case is an example of a relatively ideal medically assisted death. Jackie was an active participant in her journey and had a network of family and friends who accepted her choice and supported her. Other cases of MAiD may have complications such as values and religious beliefs clashing with the choice for an assisted death, dysfunctional family systems, absent or estranged families, or a client’s preference to hide her or his choice of an assisted death from loved ones. Quality psychosocial care leading up to an assisted death should allow for ample opportunities for the client to discuss difficult relationships, family dynamics, and regrets that may constitute “unfinished business.” Social workers can help clients decide if and how they want to act, and potentially facilitate communication. In the absence of family, social workers can offer clients the opportunity to discuss the reasons for the absence (deceased, history of abuse or neglect, conflict, geography), its impact, and how it affects their dying experience ( Fineberg, 2010 ). Whatever the complexity, research has found that terminally ill clients want to discuss unresolved psychosocial matters with their professional caretakers as they face their end of life ( Hart, Kohlwes, Deyo, Rhoades, & Bowen, 2003 ; Sulmasy, 2002 ), and social work is the profession poised to facilitate this important work.

The diversity of experiences among MAiD cases underscores the need for qualitative studies that examine the client experience throughout the MAiD process, a population currently underserved by social work research. Engaging clients as coresearchers will generate invaluable insight and guidance for developing a patient-centered model of psychosocial care for clients pursuing MAiD.

It is critical that social workers document their practice experiences with MAiD to grow this body of literature and advance practice. The knowledge gleaned from social workers doing this important work will be instrumental in highlighting the central role for the profession in MAiD. Social workers ought to be included on specialized MAiD teams to provide direct clinical care to patients and families throughout the MAiD process while also providing education and building capacity among other health care professionals ( CAPO, 2017 ; Fujioka, Mirza, McDonald, & Klinger, 2018 ; Li et al., 2017 ). This model is particularly valuable in the early years of MAiD’s establishment, until frontline social workers have developed experience and expertise.

Canadian Association of Psychosocial Oncology . ( 2017 , September 12). Role of psychosocial oncology in medical assistance in dying (MAID) . Retrieved from https://capo.ca/resources/Documents/3.3.%20Medical%20Assistance%20in%20Dying.pdf

Canadian Association of Social Workers . ( 2016 , April). Physician-assisted death: Discussion paper . Retrieved from https://casw-acts.ca/sites/casw-acts.ca/files/attachements/physician-assisted_death_casw_discussion_paper_final.pdf

Chochinov , H. M. ( 2002 ). Dignity-conserving care—A new model for palliative care: Helping the patient feel valued . JAMA, 287 , 2253 – 2260 .

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Fineberg , I. C. ( 2010 ). Social work perspectives on family communication and family conferences in palliative care . Progress in Palliative Care, 18 , 213 – 220 .

Fujioka , J. K. , Mirza , R. M. , McDonald , P. L. , & Klinger , C. A. ( 2018 ). Implementation of medical assistance in dying: A scoping review of health care providers’ perspectives . Journal of Pain and Symptom Management, 55 , 1564 – 1576 .

Ganzini , L. , Goy , E. R. , Dobscha , S. K. , & Prigerson , H. ( 2009 ). Mental health outcomes of family members of Oregonians who request physician aid in dying . Journal of Pain and Symptom Management, 38 , 807 – 815 .

Government of Canada . ( 2018 a). Medical assistance in dying . Retrieved from https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

Government of Canada . ( 2018 b). Third interim report on medical assistance in dying in Canada . Retrieved from https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-june-2018.html

Harlos , M. ( 2017 ). Sit down, lean in . Retrieved from http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/The+Exchange/Current/Sit+Down_+Lean+In.aspx

Hart , A. , Kohlwes , R. J. , Deyo , R. , Rhoades , L. A. , & Bowen , D. J. ( 2003 ). Hospice patients’ attitudes regarding spiritual discussions with their doctors . American Journal of Hospice & Palliative Care, 20 , 135 – 139 .

Hebert , R. S. , Copeland , V. C. , Schulz , R. , Amato , C. A. , & Arnold , R. M. ( 2008 ). Preparing family caregivers for the death of a loved one: Implications for hospital social workers . Journal of Social Work in End-of-Life & Palliative Care, 4 , 269 – 285 .

Hudson , P. , Quinn , K. , O’Hanlon , B. , & Aranda , S. ( 2008 ). Family meetings in palliative care: Multidisciplinary clinical practice guidelines . BMC Palliative Care, 7 ( 1 ), 1 – 12 .

Li , M. , Watt , S. , Escaf , M. , Gardam , M. , Heesters , A. , O’Leary , G. , & Rodin , G. ( 2017 ). Medical assistance in dying—Implementing a hospital-based program in Canada . New England Journal of Medicine, 376 , 2082 – 2088 .

Miller , P. J. , Hedlund , S. C. , & Murphy , K. A. ( 1998 ). Social work assessment at end of life: Practice guidelines for suicide and the terminally ill . Social Work in Health Care, 26 ( 4 ), 23 – 36 .

Miller , P. J. , Hedlund , S. C. , & Soule , A. B. ( 2006 ). Conversations at the end of life: The challenge to support patients who consider death with dignity in Oregon . Journal of Social Work in End of Life & Palliative Care, 2 ( 2 ), 25 – 43 .

Parliament of Canada . ( 2016 ). Bill C-14 (Royal assent) . Retrieved from http://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent

Rusnack , B. , Schaefer , S. M. , & Moxley , D. ( 1988 ). “Safe passage”: Social work roles and functions in hospice care . Social Work in Healthcare, 13 ( 3 ), 3 – 19 .

Slatyer , S. , Pienaar , C. , Williams , A. M. , Proctor , K. , & Hewitt , L. ( 2015 ). Finding privacy from a public death: A qualitative exploration of how a dedicated space for end‐of‐life care in an acute hospital impacts on dying patients and their families . Journal of Clinical Nursing, 24 , 2164 – 2174 .

Srinivasan , E. ( 2009 ). Bereavement experiences following a death under Oregon’s Death with Dignity Act (Doctoral dissertation). Retrieved from http://ir.library.oregonstate.edu/xmlui/bitstream/handle/1957/12006/Bereavement%20Experiences%20Following%20a%20Death%20Under%20Oregonâ™s%20Death%20With%20Dignity%20Act.pdf;jsessionid=FA30F7FD56D887392481F0840313304A?sequence=1

Steinhauser , K. E. , Voils , C. I. , Clipp , E. C. , Bosworth , H. B. , Christakis , N. A. , & Tulsky , J. A. ( 2006 ). “Are you at peace?”: One item to probe spiritual concerns at the end of life . Archives of Internal Medicine, 166 ( 1 ), 101 – 105 .

Stroebe , M. , & Schut , H. ( 1998 ). Culture and grief . Bereavement Care, 17 ( 1 ), 7 – 11 .

Sulmasy , D. P. ( 2002 ). A biopsychosocial-spiritual model for the care of patients at the end of life . Gerontologist, 42 , 24 – 33 .

Swarte , N. B. , van der Lee , M. L. , van der Bom , J. G. , van den Bout , J. , & Heintz , A.P.M. ( 2003 ). Effects of euthanasia on the bereaved family and friends: A cross sectional study . BMJ, 327 ( 7408 ), 1 – 5 .

Werth , J. L. , Jr. ( 1999 ). Mental health professionals and assisted death: Perceived ethical obligations and proposed guidelines for practice . Ethics & Behavior, 9 ( 2 ), 159 – 183 .

• medical assistance
• social work
• suicide, assisted
• terminally ill
• dacarbazine/doxorubicin/ifosfamide/mesna protocol
• psychosocial care

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138 Case Studies: Real Stories Of People Overcoming Struggles of Mental Health

At Tracking Happiness, we’re dedicated to helping others around the world overcome struggles of mental health.

In 2022, we published a survey of 5,521 respondents and found:

• 88% of our respondents experienced mental health issues in the past year.
• 25% of people don’t feel comfortable sharing their struggles with anyone, not even their closest friends.

In order to break the stigma that surrounds mental health struggles, we’re looking to share your stories.

Overcoming struggles

They say that everyone you meet is engaged in a great struggle. No matter how well someone manages to hide it, there’s always something to overcome, a struggle to deal with, an obstacle to climb.

And when someone is engaged in a struggle, that person is looking for others to join him. Because we, as human beings, don’t thrive when we feel alone in facing a struggle.

Let’s throw rocks together

Overcoming your struggles is like defeating an angry giant. You try to throw rocks at it, but how much damage is one little rock gonna do?

Tracking Happiness can become your partner in facing this giant. We are on a mission to share all your stories of overcoming mental health struggles. By doing so, we want to help inspire you to overcome the things that you’re struggling with, while also breaking the stigma of mental health.

Which explains the phrase: “Let’s throw rocks together”.

Let’s throw rocks together, and become better at overcoming our struggles collectively. If you’re interested in becoming a part of this and sharing your story, click this link!

Case studies

March 26, 2024

Journaling and Therapy Helped Me After Surviving a Car Accident and a Late Pregnancy Loss

“I vividly remember one day a few months after getting hit by the car when I wondered if my life would ever feel peaceful, pain-free, or joyful again. I was simply getting in and out of the passenger seat of a vehicle, my whole body gripped with pain and stiffness when I experienced a flash of fear that my health would never improve.”

Struggled with: Chronic pain Depression Grief PTSD

Helped by: Journaling Therapy

March 21, 2024

From the C-Suites to the Streets and Back – Overcoming Addiction, Anxiety, Depression and PTSD

“Over the past decade, I have struggled with substance abuse immensely leading to anxiety, depression, and PTSD. After losing thirteen corporate jobs and ending up homeless, beaten up, and absolutely broken on the streets I have finally come to terms with my situation and am finding a path towards long-term sobriety and happiness.”

Struggled with: Addiction Anxiety Depression PTSD

Helped by: Mindfulness Rehab Religion Self-improvement Social support

March 19, 2024

My Journey to Self-Compassion Amidst Depression, Anxiety and Suicidal Thoughts

“This suicidal edge coupled with stress, anxiety, and loneliness made me stop working as a human being. In just two months I had spiraled down into the darkest hole which has ever existed for me. There didn’t exist Marina anymore, merely a depressive and neurotic copy of her, who was unable to laugh and sleep.”

Struggled with: Anxiety Depression Panic attacks Stress Suicidal

Helped by: Self-acceptance Self-improvement Therapy

March 14, 2024

How EMDR Therapy Helped Me Navigate Childhood Trauma and Rediscover Myself

“As my anxiety levels grew, I turned to alcohol and then combined that with Vicodin to fend off the bad feelings. I would drink to the point of blacking out on a regular basis, sometimes never knowing how I got home.”

Struggled with: Abuse Addiction Bullying Childhood CPTSD

Helped by: Reinventing yourself Therapy

March 12, 2024

How Self-Care and My Infrared Sauna Blanket Help Me Navigate CPTSD and Fascia Pain

“I’m sure that other people around me knew that I was struggling, but I only shared this with a couple of people. People in my immediate physical ecosphere didn’t offer up any kind of empathy either. In fact, the exact opposite. Which I think made the condition even worse.”

Struggled with: Chronic pain CPTSD

Helped by: Journaling Meditation Self-Care

March 8, 2024

Therapy Helped Me Overcome Depression and Better Cope With Chronic Health Conditions

“I clearly remember feeling like I was stuck deep down at the bottom of a dark hole where I could barely breathe. It was especially disturbing because I didn’t care if I stayed down there and never saw light again. Looking back, I realize that my severe depressive episode had been building for years, but I didn’t really notice it.”

Struggled with: Anxiety Chronic pain Depression

Helped by: Mindfulness Self-Care Self-improvement Therapy

March 5, 2024

How Sobriety, Therapy, and Self-Care Help Me Navigate BPD and Bipolar Disorder Better

“I used to have a mindset of: “poor me” – “I’m just a victim” and “none of this is my fault”. Eventually, I knew I had to change that narrative to one of control. I had to take accountability for the things that I could change, and be honest about the things I was doing that were making everything worse.”

Struggled with: Anxiety Bipolar Disorder Borderline Personality Disorder Depression Suicidal

Helped by: Exercise Religion Self-Care Self-improvement Social support Therapy

February 29, 2024

Conquering Alcoholism and Hopelessness And Helping Others Do the Same

“I used alcohol to deal with stress, anxiety, boredom–essentially any negative feeling that I didn’t want to experience. I was also using it to try to generate positive feelings–to celebrate, to have fun, to socialize. Turning to alcohol for so many different reasons made it hard to control. I started by setting rules for myself, like only drinking on the weekends and only after a certain hour. But I consistently broke those rules, so they kept getting looser and looser.”

Struggled with: Addiction Anxiety Depression

Helped by: Exercise Rehab Self-improvement Social support Therapy

February 28, 2024

My Journey From Severe Migraines and Workplace Hostility to Reinventing Myself

“So now I’m still having migraines and nerve pain, have been removed from my job and friends, was ordered to not contact anyone from my unit, my future livelihood was at risk, and my leadership was only willing to try to remove me from sight. This lasted for almost three years.”

Struggled with: Bullying Chronic pain Depression Stress

Helped by: Reinventing yourself Self-improvement Therapy Treatment

February 25, 2024

Finding Relief From Chronic Pain and Depression With Energy Medicine & Indigenous Methods

“I remember the moment I looked in the mirror and felt like a complete failure. I had tried everything possible and nothing worked. I was at a dead end. I thought that something must be so horribly wrong with me that no one had any answers or solutions.”

Struggled with: Anxiety Childhood Chronic pain Depression

Helped by: Meditation Mindfulness Self-improvement Treatment

• Children's mental health case studies
• Food, health and nutrition
• Mental wellbeing
• Mental health

Explore the experiences of children and families with these interdisciplinary case studies. Designed to help professionals and students explore the strengths and needs of children and their families, each case presents a detailed situation, related research, problem-solving questions and feedback for the user. Use these cases on your own or in classes and training events

Each case study:

• Explores the experiences of a child and family over time.
• Introduces theories, research and practice ideas about children's mental health.
• Shows the needs of a child at specific stages of development.
• Invites users to “try on the hat” of different specific professionals.

By completing a case study participants will:

• Examine the needs of children from an interdisciplinary perspective.
• Recognize the importance of prevention/early intervention in children’s mental health.
• Apply ecological and developmental perspectives to children’s mental health.
• Predict probable outcomes for children based on services they receive.

Case studies prompt users to practice making decisions that are:

• Research-based.
• Practice-based.
• Best to meet a child and family's needs in that moment.

Children’s mental health service delivery systems often face significant challenges.

• Services can be disconnected and hard to access.
• Stigma can prevent people from seeking help.
• Parents, teachers and other direct providers can become overwhelmed with piecing together a system of care that meets the needs of an individual child.
• Professionals can be unaware of the theories and perspectives under which others serving the same family work
• Professionals may face challenges doing interdisciplinary work.
• Limited funding promotes competition between organizations trying to serve families.

These case studies help explore life-like mental health situations and decision-making. Case studies introduce characters with history, relationships and real-life problems. They offer users the opportunity to:

• Examine all these details, as well as pertinent research.
• Make informed decisions about intervention based on the available information.

The case study also allows users to see how preventive decisions can change outcomes later on. At every step, the case content and learning format encourages users to review the research to inform their decisions.

Each case study emphasizes the need to consider a growing child within ecological, developmental, and interdisciplinary frameworks.

• Ecological approaches consider all the levels of influence on a child.
• Developmental approaches recognize that children are constantly growing and developing. They may learn some things before other things.
• Interdisciplinary perspectives recognize that the needs of children will not be met within the perspectives and theories of a single discipline.

There are currently two different case students available. Each case study reflects a set of themes that the child and family experience.

The About Steven case study addresses:

• Adolescent depression.
• School mental health.
• Rural mental health services.
• Social/emotional development.

The Brianna and Tanya case study reflects themes of:

• Infant and early childhood mental health.
• Educational disparities.
• Trauma and toxic stress.
• Financial insecurity.
• Intergenerational issues.

The case studies are designed with many audiences in mind:

Practitioners from a variety of fields. This includes social work, education, nursing, public health, mental health, and others.

Professionals in training, including those attending graduate or undergraduate classes.

The broader community.

Each case is based on the research, theories, practices and perspectives of people in all these areas. The case studies emphasize the importance of considering an interdisciplinary framework. Children’s needs cannot be met within the perspective of a single discipline.

The complex problems children face need solutions that integrate many and diverse ways of knowing. The case studies also help everyone better understand the mental health needs of children. We all have a role to play.

These case has been piloted within:

Graduate and undergraduate courses.

Discipline-specific and interdisciplinary settings.

Professional organizations.

Currently, the case studies are being offered to instructors and their staff and students in graduate and undergraduate level courses. They are designed to supplement existing course curricula.

Instructors have used the case study effectively by:

• Assigning the entire case at one time as homework. This is followed by in-class discussion or a reflective writing assignment relevant to a course.
• Assigning sections of the case throughout the course. Instructors then require students to prepare for in-class discussion pertinent to that section.
• Creating writing, research or presentation assignments based on specific sections of course content.
• Focusing on a specific theme present in the case that is pertinent to the course. Instructors use this as a launching point for deeper study.
• Constructing other in-class creative experiences with the case.
• Collaborating with other instructors to hold interdisciplinary discussions about the case.

To get started with a particular case, visit the related web page and follow the instructions to register. Once you register as an instructor, you will receive information for your co-instructors, teaching assistants and students. Get more information on the following web pages.

• Brianna and Tanya: A case study about infant and early childhood mental health
• About Steven: A children’s mental health case study about depression

Cari Michaels, Extension educator

Reviewed in 2023

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Social workers promote social justice and social change with and on behalf of individuals, families, groups, organizations and communities. Social workers work in a variety of fields, including mental health, geriatrics, education and social services. Many of these social workers develop a wealth of expertise in their area, and work to advocate, organize and connect people with the services and resources they need to navigate social systems. These activities may be in the form of direct practice, community organizing, supervision, consultation, administration, advocacy, social and political action, policy development and implementation, education, and research and evaluation.

Crystal Nacolle Dunivant, a social worker and consultant trainer with the Best Practices in Schizophrenia Treatment (BeST) Center , provides ongoing training and consultation on Coordinated Specialty Care for First Episode Psychosis to 14 teams across 23 counties. Her work with FIRST teams throughout Ohio supports a better-informed workforce when it comes to identifying mental health conditions including schizophrenia, schizoaffective disorder, and bipolar disorder with psychotic features. "It is important to me that people receive equitable healthcare and culturally responsive interventions. Safety and belonging are important to help build relationships and facilitate continuity of care," says Dunivant. "Ultimately, I would like people to have the support and resources they need so they can be their best selves in their communities." 

One of her most recent projects has been to develop a Bipolar Companion Guide as part of a collaborative team of experts in the BeST Center. The guide is being used to train FIRST teams on enrollment criteria to diagnose and treat bipolar disorder.

The 2024 Social Work Month celebration this March is themed “Empowering Social Workers” and the National Association of Social Workers is recognizing social work with ways to support the social work profession as it addresses issues our nation faces—including the need for more mental health services providers. Dunivant is a current member and past board president of the NASW Ohio Chapter.

Dunivant takes pride in being the project lead for First Episode Psychosis Project ECHO, a telelearning platform that shares knowledge and presents networking opportunities for clinicians in Ohio and across the country.

-- Submitted by Lucky Tisch, [email protected]

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Anxiety skyrockets to no. 1 issue among american workers, new study shows.

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Anxiety at work reaches number one in mental health issues among the American workforce.

As the workplace headed into 2022—the third year of the pandemic—the incidence of job stress and burnout jumped to an all-time high. The American Psychological Association’s Work and Well-Being study found that 79% of the 1,501 employees surveyed experienced work-related stress in the month before the survey, and 3 in 5 workers said work-related stress caused them to have a lack of interest, motivation and energy at work. Plus, 36% had cognitive weariness, 32% emotional exhaustion, and 44% physical fatigue—a 38% jump from 2019.

Worker Anxiety Going Through The Roof In 2024

When reviewing 2023 survey data, APA psychologists widely agree there is mounting evidence that our society is experiencing the psychological impacts of a collective trauma. Although the pandemic might seem like a distant past, its aftermath along with the psychological impact of global conflict, racism, mass shootings, climate-related disasters and a turbulent economy are weighing on the mental health of the American workforce in 2024.

The latest data analysis from ComPsych analysis —based on a representative sample of more than 300,000 U.S. cases—found that anxiety is now the number one presenting issue among American workers, topping depression, stress, partner/relationship issues, family issues and addiction and grief among other topics people sought help for. In fact, in 2023 nearly a quarter of people (24%) who reached out for mental health assistance did so to get help with anxiety. This jump is especially notable as up until 2017, anxiety didn’t rank in the top five presenting issues for Americans.

According to Dr. Richard Chaifetz, founder, chairman and CEO of ComPsych. “As a society, we’re notably more anxious now than we were just five years ago, and it’s not shocking considering current world events: from the lasting impacts of COVID-19 to civil unrest, an increasingly polarized political landscape, global turmoil, the border crisis and rising crime, the proliferation of AI and an unpredictable economy—there are so many macro issues impacting people’s mental health in addition to interpersonal and personal situations.”

This trend is important for business leaders to be mindful of, particularly as mental health related leaves of absences have exploded in recent years. ComPsych data shows these leaves have increased by 300% since 2017. “For business leaders, there is an imperative to help employees cope with these feelings,” Chaifetz continued. “Companies who invest in resources for employees ultimately benefit by attracting and retaining a healthier and more productive workforce, allowing both employees and companies to thrive.”

In One Massive Attack Ukrainian Missiles Hit Four Russian Ships Including Three Landing Vessels

New gmail security rules you have 5 days to comply google says, donald trump s social media stake hits 5 6 billion, amp up your work health to mitigate anxiety.

While employers share some responsibility to create a stress-free workplace, employees also have a responsibility to their work health that is essential for long-term mental and physical viability and the trajectory of their careers. If you toil in a toxic work culture, it’s important to weigh your options and find a workplace that prides itself on employee-centered empathy and care. These work cultures are increasing as a result of the pandemic and The Great Resignation and employee demands for positive change. Even if you work in a healthy environment, chronic anxiety doesn’t give your body a chance to return to its natural resting state. The key is to create an anxiety care plan to offset any potential damage so you can reset your brain and keep it healthy. Here are 10 science-backed steps to help you create your own personalized anxiety care plan to mitigate chronic stress and thrive at work:

• Meditation limits cortisol levels by 25%, according to research, and it reduces mind wandering, free-floating anxiety and mistakes, keeping you on task at work.
• Anxiety prevention foods promote mindful productivity and work health. Aim for protein, Omega-3 fatty acids, eggs, pumpkin seeds, B vitamins and Vitamin D, dark chocolate, turmeric, chamomile, yogurt, green tea and Brazil nuts.
• Regular exercise such as brisk walking re-calibrates a fatigued brain and reduces your risk of developing anxiety by almost 60%.
• Positive self-talk can stop catastrophic mind chatter that causes anxiety and keep you calm in stressful situations.
• Sleep deprivation leads to anxiety, and ample sleep is restorative for calming your mind and contributing to your work health.
• Microbreaks —short breaks of five minutes—throughout the workday mitigate fatigue, reduce anxiety and keep your brain rested and clear.
• Mindful abdominal breathing keeps your mind sharp and focused in the present moment when anxiety tries to steal your breath away.
• An optimistic outlook prevents anxiety from ruling your mind and gives you better memory at work. Plus, looking for the opportunity in the problem helps you scale the career ladder faster and farther than pessimism, according to research.
• Brain scans of people who spend time outdoors show their prefrontal cortex has more gray matter plus a stronger ability to think clearly and self-regulate stress and anxiety.
• Social engagement mitigates cognitive decline, enhances gray matter in the brain and helps reduce anxiety. So it’s important to avoid working in isolation and maintain social connections with coworkers to keep your mind active and healthy.

Our society has become more anxious since the pandemic. The macro events of the nation and world have impacted all of us, compounding the ongoing stressors in the workplace. Most of us can no longer depend on our employers to decide what’s in our best mental health interests. You’re the captain of your ship—not a passenger. You’re in control of your mental health, not your employer. Evaluate your job and life and decide for yourself what reasonable steps you can take to mitigate your anxiety and amp up your work health.

As far as business leaders go, Chaifetz offers sage advice. “It’s vital that employers understand this and invest in their workforce’s well-being. Specifically, I recommend investing in training managers to talk about mental health and to know what their company’s resources are for those struggling with anxiety or other mental health challenges. It’s also important that organizations develop resources and programming that are specific to the unique stressors of the modern world beyond focusing just on mental health alone.”

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Introduction: Case Studies in the Ethics of Mental Health Research

Joseph millum.

Clinical Center Department of Bioethics/Fogarty International Center, National Institutes of Health, Bethesda, MD

This collection presents six case studies on the ethics of mental health research, written by scientific researchers and ethicists from around the world. We publish them here as a resource for teachers of research ethics and as a contribution to several ongoing ethical debates. Each consists of a description of a research study that was proposed or carried out and an in-depth analysis of the ethics of the study.

Building Global Capacity in Mental Health Research

According to the World Health Organization (WHO), there are more than 450 million people with mental, neurological, or behavioral problems worldwide ( WHO, 2005a ). Mental health problems are estimated to account for 13% of the global burden of disease, principally from unipolar and bipolar depression, alcohol and substance-use disorders, schizophrenia, and dementia. Nevertheless, in many countries, mental health is accorded a low priority; for example, a 2005 WHO analysis found that nearly a third of low-income countries who reported a mental health budget spent less than 1% of their total health budget on mental health ( WHO, 2005b ).

Despite the high burden of disease and some partially effective treatments that can be implemented in countries with weaker healthcare delivery systems ( Hyman et al., 2006 ), there exist substantial gaps in our knowledge of how to treat most mental health conditions. A 2007 Lancet Series entitled Global Mental Health claimed that the “rudimentary level of mental health-service research programmes in many nations also contributes to poor delivery of mental health care” ( Jacob et al., 2007 ). Its recommendations for mental health research priorities included research into the effects of interactions between mental health and other health conditions ( Prince et al., 2007 ), interventions for childhood developmental disabilities ( Patel et al., 2007 ), cost-effectiveness analysis, the scaling up of effective interventions, and the development of interventions that can be delivered by nonspecialist health workers ( Lancet Global Mental Health Group, 2007 ). All of these priorities require research in environments where the prevailing health problems and healthcare services match those of the populations the research will benefit, which suggests that research must take place all around the world. Similarly, many of the priorities identified by the Grand Challenges in Mental Health Initiative require focus on local environments, cultural factors, and the health systems of low- and middle-income countries. All the challenges “emphasize the need for global cooperation in the conduct of research” ( Collins et al., 2011 ).

Notwithstanding the need for research that is sensitive to different social and economic contexts, the trend of outsourcing to medical research to developing countries shows no sign of abating ( Thiers et al., 2008 ). Consequently, a substantial amount of mental health research will, in any case, take place in low- and middle-income countries, as well as rich countries, during the next few years.

The need for local research and the continuing increase in the international outsourcing of research imply that there is a pressing need to build the capacity to conduct good quality mental health research around the world. However, the expansion of worldwide capacity to conduct mental health research requires more than simply addressing low levels of funding for researchers and the imbalance between the resources available in rich and poor countries. People with mental health disorders are often thought to be particularly vulnerable subjects. This may be a product of problems related to their condition, such as where the condition reduces the capacity to make autonomous decisions. It may also result from social conditions because people with mental disorders are disproportionately likely to be poor, are frequently stigmatized as a result of their condition, and may be victims of human rights abuses ( Weiss et al., 2001 ; WHO, 2005a ). As a result, it is vitally important that the institutional resources and expertise are in place for ensuring that this research is carried out ethically.

Discussion at a special session at the 7th Global Forum on Bioethics in Research revealed the perception that many mental health researchers are not very interested in ethics and showed up a lack of ethics resources directly related to their work. This collection of case studies in the ethics of mental health research responds to that gap.

This collection comprises six case studies written by contributors from around the world ( Table 1 ). Each describes a mental health research study that raised difficult ethical issues, provides background and analysis of those issues, and draws conclusions about the ethics of the study, including whether it was ethical as it stood and how it ought to be amended otherwise. Three of the case studies are written by scientists who took part in the research they analyzed. For these cases, we have asked scholars independent of the research to write short commentaries on them. It is valuable to hear how the researchers themselves grapple with the ethical issues they encounter, as well as to hear the views of people with more distance from the research enterprise. Some of the ethical issues raised here have not been discussed before in the bioethics literature; others are more common concerns that have not received much attention in the context of international research. The case studies are intended to both expand academic discussion of some of the key questions related to research into mental health and for use in teaching ethics.

Case studies are an established teaching tool. Ethical analyses of such cases demonstrate the relevance of ethics to the actual practice of medical research and provide paradigmatic illustrations of the application of ethical principles to particular research situations. Concrete cases help generate and guide discussion and assist students who have trouble dealing with ethical concepts in abstraction. Through structured discussion, ethical development and decision-making skills can be enhanced. Moreover, outside of the teaching context, case study analyses provide a means to generate and focus debate on the relevant ethical issues, which can both highlight their importance and help academic discussion to advance.

People working in mental health research can benefit most from case studies that are specific to mental health. Even though, as outlined below, many of the same ethical problems arise in mental health research as elsewhere, the details of how they arise are important. For example, the nature of depression and the variation in effectiveness of antidepressive medication make a difference to how we should assess the ethics of placebo-controlled trials for new antidepressants. Moreover, seeing how familiar ethical principles are applied to one's own research specialty makes it easier to think about the ethics of one's own research. The cases in this collection highlight the commonalities and the variation in the ethical issues facing researchers in mental health around the world.

The current literature contains some other collections of ethics case studies that may be useful to mental health researchers. I note four important collections here, to which interested scholars may want to refer. Lavery et al.'s (2007) Ethical Issues in International Bio-medical Research provides in-depth analyses of ethically problematic research, mostly in low- and middle-income countries, although none of these cases involve mental health. Cash et al.'s (2009) Casebook on Ethical Issues in International Health Research also focuses on research in low- and middle-income countries, and several of the 64 short case descriptions focus on populations with mental health problems. Two further collections focus on mental health research, in particular. Dubois (2007) and colleagues developed short and longer US-based case studies for teaching as part of their “Ethics in Mental Health Research” training course. Finally, Hoagwood et al.'s (1996) book Ethical Issues in Mental Health Research with Children and Adolescents contains a casebook of 61 short case descriptions, including a few from outside the United States and Western Europe. For teachers and academics in search of more case studies, these existing collections should be very useful. Here, we expand on the available resources with six case studies from around the world with extended ethical analyses.

The remainder of this introduction provides an overview of some of the most important ethical issues that arise in mental health research and describes some of the more significant ethics guidance documents that apply.

Ethical Issues in Mental Health Research

The same principles can be applied in assessing the ethics of mental health research as to other research using human participants ( Emanuel et al., 2000 ). Concerns about the social value of research, risks, informed consent, and the fair treatment of participants all still apply. This means that we can learn from the work done in other areas of human subjects research. However, specific research contexts make a difference to how the more general ethical principles should be applied to them. Different medical conditions may require distinctive research designs, different patient populations may need special protections, and different locations may require researchers to respond to study populations who are very poor and lack access to health care or to significant variations in regulatory systems. The ethical analysis of international mental health research therefore needs to be tailored to its particularities.

Each case study in this collection focuses on the particular ethical issues that are relevant to the research it analyzes. Nevertheless, some issues arise in multiple cases. For example, questions about informed consent arise in the context of research with stroke patients, with students, and with other vulnerable groups. To help the reader compare the treatment of an ethical issue across the different case studies, the ethical analyses use the same nine headings to delineate the issues they consider. These are social value, study design, study population, informed consent, risks and benefits, confidentiality, post-trial obligations, legal versus ethical obligations, and oversight.

Here, I focus on five of these ethical issues as they arise in the context of international mental health research: (1) study design, (2) study population, (3) risks and benefits, (4) informed consent, and (5) post-trial obligations. I close by mentioning some of the most important guidelines that pertain to mental health research.

Study Design

The scientific design of a research study determines what sort of data it can generate. For example, the decision about what to give participants in each arm of a controlled trial determines what interventions the trial compares and what questions about relative safety and efficacy it can answer. What data a study generates makes a difference to the ethics of the study because research that puts human beings at risk is ethically justified in terms of the social value of the knowledge it produces. It is widely believed that human subject research without any social value is unethical and that the greater the research risks to participants, the greater the social value of the research must be to compensate ( Council for International Organizations of Medical Sciences [CIOMS], 2002 ; World Medical Association, 2008 ). However, changing the scientific design of a study frequently changes what happens to research participants, too. For example, giving a control group in a treatment trial an existing effective treatment rather than placebo makes it more likely that their condition will improve but may expose them to adverse effects they would not otherwise experience. Therefore, questions of scientific design can be ethically very complex because different possible designs are compared both in terms of the useful knowledge they may generate and their potential impact on participants.

One of the more controversial questions of scientific design concerns the standard of care that is offered to participants in controlled trials. Some commentators argue that research that tests therapeutic interventions is only permissible if there is equipoise concerning the relative merits of the treatments being compared, that is, there are not good reasons to think that participants in any arm of the trial are receiving inferior treatment ( Joffe and Truog, 2008 ). If there is not equipoise, the argument goes, then physician-researchers will be breaching their duty to give their patients the best possible care ( Freedman, 1987 ).

The Bucharest Early Intervention Project (BEIP) described in the case study by Charles Zeanah was a randomized controlled trial comparing foster care with institutional care in Bucharest, Romania. When designing the BEIP, the researchers wrestled with the issue of whether there was genuine equipoise regarding the relative merits of institutional and foster care. One interpretation of equipoise is that it exists when the professional community has not reached consensus about the better treatment ( Freedman, 1987 ). Childcare professionals in the United States were confident that foster care was superior, but there was no such confidence in Romania, where institutional care was the norm. Which, then, was the relevant professional community?

The equipoise requirement is justified by reference to the role morality of physicians: for a physician to give her patient treatment that she knows to be inferior would violate principles of therapeutic beneficence and nonmaleficence. As a result, the equipoise requirement has been criticized for conflating the ethics of the physician-patient relationship with the ethics of the researcher-participant relationship ( Miller and Brody, 2003 ). According to Miller and Brody (2003) , provided that other ethical requirements are met, including an honest null hypothesis, it is not unethical to assign participants to receive treatment regimens known to be inferior to the existing standard of care.

A subset of trial designs that violate equipoise are placebo-controlled trials of experimental treatments for conditions for which proven effective treatments already exist. Here, there is not equipoise because some participants will be assigned to placebo treatment, and ex hypothesi there already exists treatment that is superior to placebo. Even if we accept Miller and Brody's (2003) argument and reject the equipoise requirement, there remain concerns about these placebo-controlled trials. Providing participants with less effective treatment than they could get outside of the trial constitutes a research risk because trial participation makes them worse off. Moreover, on the face of it, a placebo-controlled trial of a novel treatment of a condition will not answer the most important scientific question about the treatment that clinicians are interested in: is this new treatment better than the old one? Consequently, in situations where there already exists a standard treatment of a condition, it has generally been considered unethical to use a placebo control when testing a new treatment, rather than using the standard treatment as an active-control ( World Medical Association, 2008 ).

Some psychiatric research provides scientific reasons to question a blanket prohibition on placebo-controlled trials when an effective intervention exists. For example, it is not unusual for antidepressive drugs to fail to show superiority to placebo in any given trial. This means that active-control trials may seem to show that an experimental drug is equivalent in effectiveness to the current standard treatment, when the explanation for their equivalence may, in fact, be that neither was better than placebo. Increasing the power of an active-control trial sufficiently to rule out this possibility may require an impractically large number of subjects and will, in any case, put a greater number of subjects at risk ( Carpenter et al., 2003 ; Miller, 2000 ). A 2005 trial of risperidone for acute mania conducted in India ( Khanna et al., 2005 ) was criticized for unnecessarily exposing subjects to risk ( Basil et al., 2006 ; Murtagh and Murphy, 2006 ; Srinivasan et al., 2006 ). The investigators' response to criticisms adopted exactly the line of argument just described:

A placebo group was included because patients with mania generally show a high and variable placebo response, making it difficult to identify their responses to an active medication. Placebo-controlled trials are valuable in that they expose the fewest patients to potentially ineffective treatments. In addition, inclusion of a placebo arm allows a valid evaluation of adverse events attributable to treatment v. those independent of treatment. ( Khanna et al., 2006 )

Concerns about the standard of care given to research participants are exacerbated in trials in developing countries, like India, where research participants may not have access to treatment independent of the study. In such cases, potential participants may have no real choice but to join a placebo-controlled trial, for example, because that is the only way they have a chance to receive treatment. In the Indian risperidone trial, the issue of exploitation is particularly stark because it seemed to some that participants were getting less than the international best standard of care, in order that a pharmaceutical company could gather data that was unlikely to benefit many Indian patients.

This is just one way in which trial design may present ethically troubling risks to participants. Other potentially difficult designs include washout studies, in which participants discontinue use of their medication, and challenge studies, in which psychiatric symptoms are experimentally induced ( Miller and Rosenstein, 1997 ). In both cases, the welfare of participants may seem to be endangered ( Zipursky, 1999 ). A variant on the standard placebo-controlled trial design is the withdrawal design, in which everyone starts the trial on medication, the people who respond to the medication are then selected for randomization, and then half of those people are randomized to placebo. This design was used by a Japanese research team to assess the effectiveness of sertraline for depression, as described by Shimon Tashiro and colleagues in this collection. The researchers regarded this design as more likely to benefit the participants because for legal reasons, sertraline was being tested in Japan despite its proven effectiveness in non-Japanese populations. Tashiro and colleagues analyze how the risks and benefits of a withdrawal design compare with those of standard placebo-controlled trials and consider whether the special regulatory context of Japan makes a difference.

Study Population

The choice of study population implicates considerations of justice. The Belmont Report, which lays out the ethical foundations for the United States system for ethical review of human subject research, says:

Individual justice in the selection of subjects would require that researchers … should not offer potentially beneficial research only to some patients who are in their favor or select only “undesirable” persons for risky research. Social justice requires that distinction be drawn between classes of subjects that ought, and ought not, to participate in any particular kind of research, based on the ability of members of that class to bear burdens and on the appropriateness of placing further burdens on already burdened persons. ( National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978 )

Two distinct considerations are highlighted here. The first (“individual justice”) requires that the researchers treat people equally. Morally irrelevant differences between people should not be the basis for deciding whom to enroll in research. For example, it would normally be unjust to exclude women from a phase 3 trial of a novel treatment of early-stage Alzheimer disease, given that they are an affected group. Some differences are not morally irrelevant, however. In particular, there may be scientific reasons for choosing one possible research population over another, and there may be risk-related reasons for excluding certain groups. For example, a functional magnetic resonance imaging study in healthy volunteers to examine the acute effects of an antianxiety medication might reasonably exclude left-handed people because their brain structure is different from that of right-handed people, and a study of mood that required participants to forego medication could justifiably exclude people with severe depression or suicidal ideation.

The second consideration requires that we consider how the research is likely to impact “social justice.” Social justice refers to the way in which social institutions distribute goods, like property, education, and health care. This may apply to justice within a state ( Rawls, 1971 ) or to global justice ( Beitz, 1973 ). In general, research will negatively affect social justice when it increases inequality, for example, by making people who are already badly off even worse off. The quotation from the Belmont Report above suggests one way in which research might violate a requirement of social justice: people who are already badly off might be asked to participate in research and so be made worse off. For example, a study examining changes in the brain caused by alcohol abuse that primarily enrolled homeless alcoholics from a shelter near the study clinic might only put at further risk this group who are already very badly off. An alternative way in which research can promote justice or injustice is through its results. Research that leads to the development of expensive new attention deficit hyperactivity disorder medication is likely to do little, if anything, to make the world more just. Research on how to improve the cognitive development of orphaned children in poor environments (like the BEIP) is much more likely to improve social justice.

This last point suggests a further concern about fairness—exploitation—that frequently arises in the context of international collaborative research in developing countries. Exploitation occurs, roughly, when one party takes “unfair advantage” of the vulnerability of another. This means that the first party benefits from the interaction and does so to an unfair extent ( Wertheimer, 1996 ). These conditions may be met in international collaborative research when the burdens of research fall disproportionately on people and institutions in developing countries, but the benefits of research, such as access to new treatments, accrue to people in richer countries. A number of case studies in this collection raise this concern in one way or another. For example, Virginia Rodriguez analyzes a proposed study of the genetic basis of antisocial personality disorder run by US researchers but carried out at sites in several Latin American countries. One of the central objections raised by one of the local national research ethics committees with regard to this study was that there appeared to be few, if any, benefits for patients and researchers in the host country.

Risks and Benefits

Almost all research poses some risk of harm to participants. Participants in mental health research may be particularly susceptible to risk in several ways. First, and most obviously, they may be physically or psychologically harmed as a result of trial participation. For example, an intervention study of an experimental antipsychotic may result in some serious adverse effects for participants who take the drug. Less obvious but still very important are the potential effects of stopping medication. As mentioned above, some trials of psychoactive medications require that patients stop taking the medications that they were on before the trial ( e.g ., the Japanese withdrawal trial). Stopping their medication can lead to relapse, to dangerous behavior (like attempted suicide), and could mean that their previous treatment regimen is less successful when they attempt to return to it. Participants who were successfully treated during a trial may have similar effects if they do not have access to treatment outside of the trial. This is much more likely to happen in research conducted with poor populations, such as the Indian mania patients.

The harms resulting directly from research-related interventions are not the only risk to participants in mental health research. Participation can also increase the risks of psychosocial harms, such as being identified by one's family or community as having a particular condition. Such breaches of confidentiality need not involve gross negligence on the part of researchers. The mere fact that someone regularly attends a clinic or sees a psychiatrist could be sufficient to suggest that they have a mental illness. In other research, the design makes confidentiality hard to maintain. For example, the genetic research described by Rodriguez involved soliciting the enrollment of the family members of people with antisocial personality disorder.

The harm from a breach of confidentiality is exacerbated when the condition studied or the study population is stigmatized. Both of these were true in the case Sana Loue describes in this collection. She studied the co-occurrence of severe mental illnesses and human immunodeficiency virus risk in African-American men who have sex with men. Not only was there shame attached to the conditions under study, such that they were euphemistically described in the advertisements for the research, but also many of the participants were men who had heterosexual public identities.

Informed Consent

Many people with mental disorders retain the capacity (ability) and competence (legal status) to give informed consent. Conversely, potential participants without mental problems may lack or lose capacity (and competence). Nevertheless, problems with the ability to consent remain particularly pressing with regard to mental health research. This is partly a consequence of psychological conditions that reduce or remove the ability to give informed consent. To study these conditions, it may be necessary to use participants who have them, which means that alternative participants who can consent are, in principle, not available. This occurred in the study of South African stroke patients described by Anne Pope in this collection. The researcher she describes wanted to compare the effectiveness of exercises designed to help patients whose ability to communicate was compromised by their stroke. Given their communication difficulties and the underlying condition, there would inevitably be questions about their capacity. Whether it is permissible to enroll people who cannot give informed consent into a study depends on several factors, including the availability of alternative study populations, the levels of risk involved, and the possible benefits to participants in comparison with alternative health care they could receive.

In research that expects to enroll people with questionable capacity to consent, it is wise to institute procedures for assessing the capacity of prospective participants. There are two general strategies for making these assessments. The first is to conduct tests that measure the general cognitive abilities of the person being assessed, as an IQ test does. If she has the ability to perform these sorts of mental operations sufficiently well, it is assumed that she also has the ability to make autonomous decisions about research participation. A Mini-Mental State Examination might be used to make this sort of assessment ( Kim and Caine, 2002 ). The second capacity assessment strategy focuses on a prospective participant's understanding and reasoning with regard to the specific research project they are deciding about. If she understands that project and what it implies for her and is capable of articulating her reasoning about it, then it is clear that she is capable of consenting to participation, independent of her more general capacities. This sort of assessment requires questions that are tailored to each specific research project and cannot be properly carried out unless the assessor is familiar with that research.

Where someone lacks the capacity to give consent, sometimes a proxy decision maker can agree to trial participation on her behalf. In general, proxy consent is not equivalent to individual consent: unless the proxy was expressly designated to make research decisions by the patient while capacitated, the proxy lacks the power to exercise the patient's rights. As a result, the enrollment of people who lack capacity is only acceptable when the research poses a low net risk to participants or holds out the prospect of benefiting them. When someone has not designated a proxy decision maker for research, it is common to allow the person who has the power to make decisions about her medical care also to make decisions about research participation. However, because medical care is directed at the benefit of the patient, but research generally is not aimed at the benefit of participants, the basis for this assumption is unclear. Its legal basis may be weak, too. For example, in her discussion of research on South African stroke patients, Pope notes the confusion surrounding the legality of surrogate decision makers, given that the South African constitution forbids proxy decision making for adults (unless they have court-appointed curators), but local and international guidance documents seem to assume it.

Although it is natural to think of the capacity to give consent as an all-or-nothing phenomenon, it may be better conceptualized as domain-specific. Someone may be able to make decisions about some areas of her life, but not others. This fits with assumptions that many people make in everyday life. For example, a 10-year-old child may be deemed capable of deciding what clothes she will wear but may not be capable of deciding whether to visit the dentist. The capacity to consent may admit of degrees in another way, too. Someone may have diminished capacity to consent but still be able to make decisions about their lives if given the appropriate assistance. For example, a patient with mild dementia might not be capable of deciding on his own whether he should move in with a caregiver, but his memory lapses during decision making could be compensated for by having his son present to remind him of details relevant to the decision. The concept of supported decision making has been much discussed in the literature on disability; however, its application to consent to research has received little attention ( Herr, 2003 ; United Nations, 2007 ).

The ability to give valid informed consent is the aspect of autonomy that is most frequently discussed in the context of mental health research, but it is not the only important aspect. Several of the case studies in this collection also raise issues of voluntariness and coercion. For example, Douglas Wassenaar and Nicole Mamotte describe a study in which professors enrolled their students, which raises the question of the vulnerability of student subjects to pressure. Here, there is both the possibility of explicit coercion and the possibility that students will feel pressure even from well-meaning researchers. For various reasons, including dependence on caregivers or healthcare professionals and the stigma of their conditions, people with mental illnesses can be particularly vulnerable to coercion.

Post-Trial Obligations

The obligations of health researchers extend past the end of their study. Participants'data remain in the hands of researchers after their active involvement in a study is over, and patients with chronic conditions who enroll in clinical trials may leave them still in need of treatment.

Ongoing confidentiality is particularly important when studying stigmatized populations (such as men who have sex with men as discussed by Sana Loue) or people with stigmatizing conditions (such as bipolar disorder). In research on mental illnesses, as with many medical conditions, it is now commonplace for researchers to collect biological specimens and phenotypic data from participants to use in future research (such as genome-wide association studies). Additional challenges with regard to confidentiality are raised by the collection of data and biological specimens for future research because confidentiality must then be guaranteed in a long period of time and frequently with different research groups making use of the samples.

Biobanking also generates some distinctive ethical problems of its own. One concerns how consent to the future use of biological specimens should be obtained. Can participants simply give away their samples for use in whatever future research may be proposed, or do they need to have some idea of what this research might involve in order to give valid consent? A second problem, which arises particularly in transnational research, concerns who should control the ongoing use of the biobank. Many researchers think that biological samples should not leave the country in which they were collected, and developing country researchers worry that they will not be allowed to do research on the biobanks that end up in developed countries. This was another key concern with the proposed study in Latin America.

In international collaborative research, further questions arise as a result of the disparities between developing country participants and researchers and developed country sponsors and researchers. For example, when clinical trials test novel therapies, should successful therapies be made available after the trial? If they should, who is responsible for ensuring their provision, to whom should they be provided, and in what does providing them consist? In the case of chronic mental illnesses like depression or bipolar disorder, patient-participants may need maintenance treatment for the rest of their lives and may be at risk if treatment is stopped. This suggests that the question of what happens to them after the trial must at least be considered by those who sponsor and conduct the trial and the regulatory bodies that oversee it. Exactly on whom obligations fall remains a matter of debate ( Millum, 2011 ).

Ethics Guidelines

A number of important policy documents are relevant to the ethics of research into mental disorders. The WMA's Declaration of Helsinki and the CIOMS' Ethical Guidelines for Biomedical Research both consider research on individuals whose capacity and/or competence to consent is impaired. They agree on three conditions: a) research on these people is justified only if it cannot be carried out on individuals who can give adequate informed consent, b) consent to such research should be obtained from a proxy representative, and c) the goal of such research should be the promotion of the health of the population that the research participants represent ( Council for International Organizations of Medical Sciences, 2002 ; World Medical Association, 2008 ). In addition, with regard to individuals who are incapable of giving consent, Guideline 9 of CIOMS states that interventions that do not “hold out the prospect of direct benefit for the individual subject” should generally involve no more risk than their “routine medical or psychological examination.”

In 1998, the US National Bioethics Advisory Commission (NBAC) published a report entitled Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity ( National Bioethics Advisory Commission, 1998 ). As the title suggests, this report concentrates on issues related to the capacity or competence of research participants to give informed consent. Its recommendations are largely consistent with those made in the Declaration of Helsinki and CIOMS, although it is able to devote much more space to detailed policy questions (at least in the United States context). Two domains of more specific guidance are of particular interest. First, the NBAC report considers the conditions under which individuals who lack the capacity to consent may be enrolled in research posing different levels of risk and supplying different levels of expected benefits to participants. Second, it provides some analysis of who should be recognized as an appropriate proxy decision maker (or “legally authorized representative”) for participation in clinical trials.

Finally, the World Psychiatric Association's Madrid Declaration gives guidelines on the ethics of psychiatric practice. This declaration may have implications for what is permissible in psychiatric research, insofar as the duties of psychiatrists as personal physicians are also duties of psychiatrists as medical researchers. It also briefly considers the ethics of psychiatric research, although it notes only the special vulnerability of psychiatric patients as a concern distinctive of mental health research ( World Psychiatric Association, 2002 ).

The opinions expressed are the author's own. They do not reflect any position or policy of the National Institutes of Health, U.S. Public Health Service, or Department of Health and Human Services.

Disclosure : The author declares no conflict of interest.

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