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(Sept. 12, 2018) This week's Research Weekly was co-written by Dr. Jennifer Lavoie and Lauren Ashby, MA Student, Department of Criminology, Wilfrid Laurier University, and concerns the role of caregivers, referred to here as carers, to people with severe mental illness - people who are often the ones fighting for better treatment, even over the resistance of their loved ones.

As we at the Treatment Advocacy Center know all too well, caregivers can bear the brunt of their loved one's symptoms, and endure a range of physical, emotional and financial burdens. These people have our gratitude for their efforts and resilience and are invited to participate in Dr. Lavoie's research regarding family carers role in police response to their loved ones in mental health crisis. Instructions are provided at the end of this post.

Dr. Lavoie's research on the family caregiver's role in police response to mental health crisis is truly exceptional, filling an information gap that is much needed due to the unique role in caring for individuals with serious mental illness. Dr. Lavoie has extended her research to the United States in partnership with the Treatment Advocacy Center to fill that information void in the U.S. and understand the similarities and differences between the two countries. I hope you will review their findings and consider participating in their study.

Relative Invisibility: An Integrative Review of Carer's Lived Experiences of a Family Member's Emergency Mental Health Crisis

Introduction

Family carers play an enormous role in supporting a loved one during a mental health crisis. In the U.S. and Canada, the shift away from treatment in long-term psychiatric institutions in favor of independent community living has increased the roles of both family carers and emergency responders, such as police, in mental health intervention. Between 5-30% of police interactions involve a person with mental illness, often in crisis, and this rate is on the rise. Often, it is family carers who provide informal support and care for their relative during illness and in times of crisis, initiate help-seeking and liaise with emergency services on behalf of their family member. Family carers have reported the need for improvement in emergency responses to mental health crises and have asked for greater understanding of the family's experience during crisis episodes.

The Study

To understand the preliminary information around family carer's perspectives, a review was conducted of published research that examined carer's lived experiences of an adult relative's mental health crisis. More than 3,350 citations were retrieved from scholarly research databases citing nursing, social work, criminology, medical and psychology studies and 25 articles met criteria to be included in the review. Systematic evaluation and analysis of the contents of the articles and revealed five key themes:

"Building to Crisis"

Witnessing a loved one becoming ill without understanding what was happening was upsetting for carers, especially if the family had no previous experience with mental illness. This time was marked by uncertainty as family carers attempted to make sense of changes in their relative but were unsure how best to respond and where to seek help. Carers also described a period of "frustrated waiting" - having to manage more disruptive behaviors as their relative's condition deteriorated, waiting until admission criteria was met so that care could be accessed.

Conflicted Emotional Experience

Carers discussed the feeling of acute stress and later relief when their relative received hospital care, intertwined with varied of emotions including confusion, grief, loss and hope. On the one hand, family members wanted to secure needed intervention for their loved one, but on the other, the reprieve they felt in accessing formal care was often accompanied by guilt and betrayal, especially when police were called for assistance.

Police Trepidation

Carers expressed wariness of calling for police intervention for a number of reasons including fear over disproportionate use of force and concern over unnecessary criminalization of their loved one. Carers conceded that safety of officers and others should prevail when the person in crisis engaging in threatened or actual violence. Carers perceived police as lacking in mental health expertise.

Invisible Experts

Carers' expressed frustration with not being listened to and felt their concerns about their relative were dismissed, or not taken seriously by professionals. Many carers felt that treatment was difficult to access during crisis. Carers widely desired to be meaningfully included in the care of their relative, and to have their own needs acknowledged and supported.

"Need to Know"

Carers expressed a need for honest and accurate information about the condition and treatment of their family member. Challenges around privacy and confidentiality were common. Family carers saw the importance of respecting the patient's right to privacy. However, they also viewed patient confidentiality policies as a barrier to receiving important information on proper care for their loved one when returning home.

Conclusion

With the increase in the U.S. and Canada of family carers providing support for their loved one with mental illness, ensuring a supportive experience for the carer is important so they can continue this role. Increasing emergency responders' understanding of the lived experiences and needs of family carers during emergency crises is vital in enhancing the quality of these interactions, fostering a procedurally fair and compassionate approach, and legitimizing and supporting caregivers.