A Guidebook for Loved Ones Involved in a Network of Care (LINC) by coordinatingcenters

A Guidebook for Loved Ones Involved in a Network of Care (LINC) ©2021 Adapted and reproduced by: Best Practices in Schizophrenia Treatment (BeST) Center Department of Psychiatry Northeast Ohio Medical University www.neomed.edu/bestcenter Used with permission.

Please note: Individuals may reproduce and distribute these materials under the following conditions: • • • • •

Personal use by adults with mental illness and their loved ones. Academic purposes by instructors or students involved in human services and mental health education. Program planning purposes by mental health staff and administrators. Advocacy purposes by stakeholders in the mental health system. Non-commercial purposes only.

Recommended citation: Hupp, D.R. (2021). A Guidebook for Loved Ones Involved in a Network of Care (LINC). Best Practices in Schizophrenia Treatment (BeST) Center, Northeast Ohio Medical University, Rootstown, Ohio.

You or someone you love has been diagnosed with a mental illness. You want to know what to expect. You want to know how to help. With the right treatment and support, individuals living with a mental illness can and do get better. Loved Ones Involved in a Network of Care (LINC) can help.

A Guidebook for Loved Ones Involved in a Network of Care (LINC) Acknowledgements The Best Practices in Schizophrenia Treatment (BeST) Center staff extends sincere gratitude to: The Family Institute for Education, Practice and Research, the New York State Office of Mental Health, and the University of Rochester Medical Center for their permission to adapt the Consumer Centered Family Consultation (CCFC) model. The initial manual used in Loved Ones Involved in a Network of Care (LINC) was an adaptation of the CCFC manual. Integral to this sharing of knowledge were Anne Smith, LMSW, and Tom Jewell, Ph.D., without whom the development of the BeST Center’s Loved Ones Involved in a Network of Care (LINC) program would not have been possible. We appreciate their time, effort, and energies in helping to move the BeST Center’s LINC program forward. National Institute of Mental Health’s Recovery After an Initial Schizophrenia Episode (RAISE) Navigate Family Psychoeducation manual, which served as the basis for some of the materials used in this guide. Peg’s Foundation and its board of trustees for their vision and leadership in creating and sustaining the BeST Center through generous grants. Disability Rights Ohio for providing information regarding the State of Ohio Declaration for Mental Health Treatment. Debra R. Hrouda, Ph.D., MSSA, LISW-S, BeST Center Director of Practice Implementation and Evaluation, for review and expertise.

A Guidebook for Loved Ones Involved in a Network of Care (LINC) Table of Contents Introduction and Orientation to LINC • Overview of the BeST Center’s LINC Program • Orientation to LINC Sessions • Setting the Agenda

7 9 11 16

Mental Health Recovery: The Expectation • Defining and Supporting “Recovery”

21 24

Understanding Mental Illness • Contributing Factors to Mental Illness • What is in a Name? The Purpose of Diagnostic Labels • Treatment Options • Understanding a Person’s Experience • Symptoms and Diagnoses: Psychosis • Symptoms and Diagnoses: Mood • Symptoms and Diagnoses: Mood Plus Psychosis • Anosognosia

29 31 34 34 36 37 40 42 43

Treatment Option: Medication • Types of Medications • Preparing a Medication List

47 50 51

Stress Management and Coping • Signs and Impact of Stress • Reducing Stress • Techniques for Coping with Stress • Understanding Your “Stress Bucket” • Understanding Your Shared “Stress Bucket”

55 58 59 61 65 71

Relapse Prevention • Relapse • Environmental Cues • Early Warning Signs • Preventing Relapse • Decreasing the Chance for Symptom Relapse • Monitoring Symptoms and Checking In

77 79 80 81 83 84 85

Preparing for an Emergency and Advance Directives • Preparing for an Emergency • Mental Health Information Sheet • Advance Directives for Mental Health

91 93 95 97

Use of Substances and the Impact on Mental Health • Substance Use and Misuse • Common Reasons for Use • Issues Related to Substance Use and Misuse

105 107 108 109

Personal Values, Strengths, and Goals • Personal Values and What Matters Most • Personal Strengths • Strengths of Your Support System • Setting Goals

115 118 119 122 123

Communication • Communication Styles • Why Effective Communication Is So Important • Communication and the Human Experience • Skills for Effective Communication • Helpful Tips for Loved Ones • Communicating with the Treatment Team

131 133 135 137 139 145 147

Problem-Solving • Problem-Solving Skills

153 156

Closing Remarks and Accessing Additional Resources

163

Introduction and Orientation to Loved Ones Involved in a Network of Care (LINC) Included in this section: • Overview of the BeST Center’s LINC Program • Orientation to LINC Sessions o General Guidelines for a Successful LINC Session o The Sharing of Experiences o Planning Ahead for the “What Ifs” • Setting the Agenda

In this section, you will learn about: • Research support for involving loved ones in treatment and recovery • LINC program overview and goals • Readiness to make changes

Introduction and OVERVIEW OF THE Orientation BeST CENTER’S to LOVED ONES INVOLVED IN A in NETWORK OF CAREof(LINC) PROGRAM Loved Ones Involved a Network Care (LINC) The Best Practices in Schizophrenia Treatment (BeST) Center fosters and supports the involvement of family members, friends, and other support persons in the treatment and care of individuals living with a mental illness. Through its Loved Ones Involved in a Network of Care (LINC) program, the BeST Center works with hospitals and outpatient community partners to assess the needs of individuals diagnosed with a mental illness along with their loved ones and provides them with the most appropriate information and resources. Loved ones, within the context of the LINC program, means anyone who cares for or about an individual diagnosed with a mental illness. This person could be a family member/ relative, significant other, friend, neighbor, or other support person. Research and experience have shown that providing information, guidance, and support to families can play an important role in supporting an individual’s treatment goals and recovery, as well as the goals and health of the entire family.1-7 Research indicates that length of hospital stay and readmission rates are very high for individuals diagnosed with a serious mental illness (e.g., schizophrenia). In addition, research has shown that the involvement of knowledgeable and supportive loved ones makes it more likely that an individual will remain out of the hospital. Hospitalization and re- hospitalization are costly, disruptive and at times frightening experiences for individuals with a mental illness and their loved ones.1-7 But why is hospitalization for a mental illness sometimes necessary? When an individual experiences a return or worsening of symptoms – what is referred to as a relapse – a brief hospitalization may be helpful in order to get the individual back on track and leading an enjoyable, productive life. This could mean changing medication or starting to take medication again, gaining control over symptoms, involving supportive and knowledgeable others in strategic and planful ways, and ensuring that the individual and others are safe from harm.

The LINC program aims to provide you and your loved ones with information about causes, symptoms, and treatments of mental illnesses. In addition, LINC offers strategies for how to communicate and handle problems outside of the hospital setting, as well as how to recognize warning signs of a potential symptom relapse. Education is empowering! LINC is a brief, education- and skill-based service with you and your loved ones at the center of all decisions. The purpose of this guidebook is to lead and accompany you through the LINC program. LINC is designed to bring you and your loved ones together to support each other. Sometimes, just coming together is enough to create an atmosphere of support. At other times, you and your loved ones may want to learn more about mental health and ways to prevent symptom relapse. LINC works to get everyone on the same page and to feel more comfortable talking with one another. Each person who takes part brings their own expertise, strengths, and experiences. The goal is to work together to help everyone involved – reach their goals, improve communication and problem-solving, and ensure everyone feels heard, supported, and understood. LINC believes in the importance of working together. You, your loved ones, and the LINC clinician are equal partners; each individual is an expert in what they bring to the sessions. To prepare for LINC sessions and to discuss how to handle difficult situations, it is important to briefly review the next few pages together to ensure that the LINC sessions run smoothly for everyone involved.

ORIENTATION TO LINC SESSIONS Reasons for this introductory session are: • To provide some general “rules” or guidelines for the LINC sessions • To plan and list the goals/issues/topics each person would like to discuss during LINC (and certain “hot button” areas that those participating in LINC prefer not to discuss) • To prepare each person for the likelihood that some of the experiences and perspectives you or your loved ones share may be difficult to hear or understand • To talk about how to handle any unexpected situations or “touchy subjects” that may arise during LINC • To learn how to stay focused and remain calm during a session, as well as how to handle tense or difficult moments (including how to call a “time out” when necessary) • To discuss what LINC can do for individuals living with a mental illness and their loved ones – and what it cannot (e.g., what are some realistic goals that can be reached in this brief program)

Remember: The goal of LINC is to provide education and enhance skills. If other services are requested or recommended, the LINC clinician will provide a referral or other information and resources. GENERAL GUIDELINES FOR A SUCCESSFUL LINC SESSION Some general guidelines are important to remember throughout the LINC sessions. Each person must follow these “rules” for the sessions to be successful. •

Remain calm and, if a conversation is overwhelming, call a “time out”

•

Be honest and firm – but not aggressive

•

Try to be open to hearing others’ points-of-view

•

Stay on topic, and remember the agreed-upon topics from the LINC agenda you will create

UNDERSTANDING READINESS TO MAKE CHANGES Everyone goes through a series of stages when we need to make changes to improve our health. Similarly, we all approach change in different ways. The change may be taking medications on a regular basis, starting or changing jobs, moving, or any number of life changes. The Stages of Change Readiness (part of the Transtheoretical Model of Intentional Behavior Change described by Prochaska, DiClemente, and Norcross, 1992)8 gives us a way of thinking about the stages we go through. Different supports and ways of interacting with each other correspond to different stages of change.

This Photo by Unknown Author is licensed under CC BY-SA-NC

THE STAGES OF CHANGE READINESS8 PRE-CONTEMPLATION (not thinking about it)

CONTEMPLATION (thinking about it)

PREPARATION (getting ready) ACTION

MAINTENANCE

Someone in the Pre-contemplation stage does not recognize a situation exists that requires any change on their part. (Sometimes, people are in Precontemplation when they have given up hope and do not believe change will help the situation.) As you can imagine, if you do not recognize a need to change, you are not going to do anything to change – and may be frustrated when others continue talking about how and when to change. Someone in the Contemplation stage may recognize a situation exists that requires change, however, may not feel it is as important as others may. People in the Contemplation stage may be ambivalent about the situation or the potential options to address it. They may benefit from information and education on the options available. They need to build the case to tip their ambivalence from not doing something to being motivated to make the change. Some in the Preparation stage will start making concrete plans to make the change. As the name implies, someone in the Action stage is doing what they planned on doing (e.g. exercising, taking medication, eating fruit – whatever they chose). Someone in the Maintenance stage has made and kept the change such that it is the “new normal.”

THE STAGES OF CHANGE READINESS Conflict sometimes occurs when we presume that we are all in the same stage of readiness. As you interact with each other, make plans, and work together toward health and wellness, it will be very important to check with each other and figure out how ready each of you is to make the change. When one person is not in the same stage of readiness as others, it can become frustrating for everyone. We need to work together to meet each of our readiness needs. Oftentimes, it is important that you change the way you approach someone else based on how ready they are to make a change, as opposed to what you – yourself – are ready for.

THE SHARING OF EXPERIENCES It is important to remember that each person affected by a mental illness has their own unique experiences and points-of-view. This is not limited to the person living with a mental illness; all those who care for this person are impacted. In LINC, it is likely that each person will want to share their own experiences. We must try to understand the perspectives of others, even though we may not always agree with what they say. LINC is designed to be brief, and it is not therapy. There may be times that the LINC clinician will interrupt a discussion between those of you participating in a LINC session if things become too emotionally intense. If you are unable to continue due to these intense emotions, the LINC clinician will provide a referral to other services until you feel ready to start LINC again.

PLANNING AHEAD FOR THE “WHAT IFS” The following are examples of “what ifs” that could occur during LINC sessions (for example, when a “touchy” subject is brought up). It is important to come up with a plan should a difficult situation arise in session. Remember, though, that not every session can go exactly according to plan, so remaining flexible and patient is also important. Let’s review these together. How would you like to handle the following situations? Someone brings up a topic that another person does not want to discuss at this time:

An argument starts between two (or more) people:

What are some other “what ifs” you can think of?

How do you plan to remain calm, even during tense or emotional times, during these LINC sessions? What are some strategies you might use to work through a difficult situation?

SETTING THE AGENDA During the LINC sessions: What would you like to focus on? What are you and your loved ones’ unique needs? What do you hope to get out of these sessions? TOPIC AREA

Participant

MENTAL HEALTH RECOVERY: THE EXPECTATION UNDERSTANDING MENTAL ILLNESS TREATMENT OPTION: MEDICATION STRESS MANAGEMENT AND COPING RELAPSE PREVENTION PREPARING FOR AN EMERGENCY AND ADVANCE DIRECTIVES USE OF SUBSTANCES AND THE IMPACT ON MENTAL HEALTH PERSONAL VALUES, STRENGTHS, AND GOALS COMMUNICATION PROBLEM-SOLVING Agreed upon items (in order of priority to discuss): 1. ______________________________________________________________________ 2. ______________________________________________________________________ 3. ______________________________________________________________________

These items are the agenda for the sessions, intended to guide you through your participation in the LINC program. Because these are the areas that you have identified as most important to you and your loved ones, we will focus on them during our time together.

QUESTIONS OR CONCERNS ABOUT THE LINC PROGRAM Before moving on, let’s discuss any questions or concerns you might have about participating in the LINC program with your loved ones.

What are some initial questions you have for today?

What are questions or concerns you have that you hope will be addressed during your work in the LINC program?

Introduction and Orientation to Loved Ones Involved in a Network of Care (LINC) In this section, you have learned: • Loved ones, within the context of the LINC program, is defined as anyone who cares for or about an individual diagnosed with a mental illness. • Research indicates that providing support, information, and guidance to loved ones makes a positive impact for everyone involved. • LINC is a brief, education- and skill-based service with you and your loved ones at the center of all decisions. • Everyone goes through a series of stages when making changes to improve their health – and everyone approaches change in different ways. Different supports and ways of interacting with each other correspond to different stages of change.

Introduction and Orientation to Introduction and Orientation to Loved Ones Involved in a Network of Care (LINC) Loved Ones Involved in a Network of Care (LINC) Sources: 1Cuijpers,

P. (1999). The effects of family interventions on relatives' burden: A meta-analysis. Journal of Mental Health, 8(3), 275-285. doi: 10.1080/09638239917436 2Dixon,

L. B., & Lehman, A. F. (1995). Family Interventions for Schizophrenia. Schizophrenia Bulletin, 21(4), 631- 643. doi: 10.1093/schbul/21.4.631 3Dyck,

D. G., Short, R. A., Hendryx, M. S., Norell, D., Myers, M., Patterson, T.,…McFarlane, W. R. (2000). Management of negative symptoms among patients with schizophrenia attending multiplefamily groups. Psychiatric Services, 51(4), 513. 4Falloon,

I. (1985). Family management of schizophrenia: A study of clinical, social, family, and economic benefits. Baltimore: John Hopkins University Press. 5Jewell,

T., McFarlane, W., Dixon, L., & Miklowitz, D. (2005). The evidence-based practice: Methods, models, and tools for mental health professionals. New Jersey: J. Wiley & Sons. 6McFarlane,

W., Lukens, E., Link, B., Dushay, R., Deakins, S., Newmark, M.,…Toran, J. (1995). Multiple-family groups and psychoeducation in the treatment of schizophrenia. Archives of General Psychiatry, 52(8), 679-687. doi: 10.1001/archpsyc.1995.03950200069016 7Penn,

D.L., & Mueser, K.T., (1996). Research Update on the Psychosocial Treatment of Schizophrenia. American Journal of Psychiatry, 153(5), 607-617. doi: 10.1176/appi.ajp.158.2.163 8Prochaska,

J.O., DiClemente, C.C., & Norcross, J.C. (1992). In search of how people change: Applications to the addictive behaviors. American Psychologist, 47, 1102-1114. PMID: 1329589.

Mental Health Recovery: The Expectation

Included in this section: • Defining and Supporting “Recovery” In this section, you will learn about: • The many definitions of recovery • What recovery means to you and your loved ones

Mental Health Recovery: The Expectation MENTAL HEALTH RECOVERY: THE EXPECTATION Given the previous discussions of symptoms, relapse, and Advance Directives, it is not surprising that many people believe mental illness to be chronic and debilitating in a person’s life. It is often thought that individuals living with a mental illness rarely, if ever, get well. But that is not the case! With timely and appropriate treatment, knowledgeable and supportive loved ones, and the necessary skills to overcome stressors and barriers, individuals can and do recover. Reliable information and ongoing, appropriate support, can help individuals learn to cope with stress, manage symptoms, and develop plans to ensure help is available should it be needed. Recovery from serious mental illness is more common than many people know. Most individuals go on to live meaningful and productive lives. In fact, 60-80% of individuals show recovery or significant improvement in long-term studies worldwide.1

DEFINING AND SUPPORTING “RECOVERY” It is important to understand what “recovery” means to each of you. What does mental health recovery mean to you? What will it look like, and how will you know you or your loved one gets there (or are on the way)? ________________________________________________________________________________ ________________________________________________________________________________ ________________________________________________________________________________ ____________________________________________________________________ How are your definitions similar? How are they different? What is some common ground that you can all agree upon for what recovery means or what it looks like? ________________________________________________________________________________ ________________________________________________________________________________ ________________________________________________________________________________ ____________________________________________________________________ Name four things you can do to support recovery as an individual: 1.___________________________________________________________________________ 2.___________________________________________________________________________ 3.___________________________________________________________________________ 4.___________________________________________________________________________ Name four things you can do to support recovery as a group: 1.___________________________________________________________________________ 2.___________________________________________________________________________ 3.___________________________________________________________________________ 4.___________________________________________________________________________

Many define mental health recovery as meaningful improvement in symptoms so that symptoms become less disruptive to someone’s life. Recovery can be thought of as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential” (SAMHSA, 2006).2 Others define recovery based on the level of engagement in work, school, or social activities. Remember, how you and your loved ones define recovery will be unique to your situation. Regardless of how recovery is defined, it must be the expectation – and not the exception, just as with other health conditions. Additional ideas about recovery might include some aspects from the quotes that follow. The definitions of mental health recovery have several themes in common, such as hope, choice, individuality, and recovery as a process and an attitude, not a cure or end point. It is also imperative that the individual living with the mental illness is an active agent in the recovery process. No one is responsible for having an illness, but the individual is responsible for their own recovery…and those around them can be supportive and of help.

2012. Substance Abuse and Mental Health Services Administration (SAMSHA).

“Recovery does not mean cure. Recovery is an attitude, a stance, a way of approaching the day’s challenges. It is not a perfectly linear journey. There are times of rapid gains and disappointing relapses. There are times of just living, just staying quiet, resting, regrouping. Each person’s journey of recovery is unique. Each person must find what works for him or her. This means that we must have the opportunity to try and to fail and to try again. In order to support the recovery process, mental health professionals [and family] must not rob us of the opportunity to fail. Professionals [and family] must embrace the concept of… dignity, of risk, and the right to failure IF they are to be supportive of us.” -Patricia Deegan, Ph.D., (Creator of Common Ground, consultant and activist for recovery and empowerment) in Psychiatric Rehabilitation Journal, 1996, 19(3), p. 9197.3

“Recovery is a process, sometimes lifelong, through which a consumer achieves independence, self-esteem, and a meaningful life in the community. Recovery can be facilitated by particular features of care and the care system; it can also be inhibited by other features. Hence, we can speak of recovery-oriented planning and recoveryoriented services.” -Kathryn Power, M.Ed. (Director of the Center for Mental Health Services) and Ronald Manderscheid, Ph.D., (Chief of the Survey and Analysis Branch within the Substance Abuse and Mental Health Services Administration)3

“Recovery is not remission, nor is it a return to an existing state: Recovery takes place through creation of new patterns of behavior that make lives more satisfying and productive.” -Harriet Lefley, Ph.D. (Professor of Psychology, University of Miami)3

Mental Health Recovery: The Expectation In this section, you have learned: • Recovery is a multifaceted concept that can be defined or described in many ways. • Mental health recovery is often defined as a process by which an individual achieves meaningful improvement so that their symptoms become less disruptive. • How you and your loved ones define “recovery” and how you can support recovery, as individuals and as a group.

Mental Health Recovery: The Expectation Sources: 1American

Psychological Association & Jansen, M. A. (2014). Reframing Psychology for the Emerging Health Care Environment: Recovery Curriculum for People with Serious Mental Illnesses and Behavioral Health Disorders. Washington, DC: American Psychological Association. 2SAMHSA’s

Working Definition of recovery (from Substance Abuse and Mental Health Services Administration, 2006). National consensus statement on mental health recovery. Rockville, MD: US Department of Health and Human Services. Accessed online Aug 2015. http://store.samhsa.gov/product/SAMHSA-s-Working-Definition-of-Recovery/PEP12-RECDEF. 3Family

Institute for Education, Practice, and Research. (2011). Consumer Centered Family Consultation. University of Rochester Medical Center, NY (unpublished manual).

Understanding Mental Illness

Included in this section: • • • • • • • •

Contributing Factors to Mental Illness What is in a Name: The Purpose of Diagnostic Labels Treatment Options Understanding a Person’s Experience Symptoms and Diagnoses: Psychosis Symptoms and Diagnoses: Mood Symptoms and Diagnoses: Mood plus Psychosis Anosognosia

In this section, you will learn about: • • • • •

What a mental illness is What factors contribute to the development of a mental illness The purpose of receiving a diagnosis Treatment options The biopsychosocial model that guides how treatment is approached • Symptoms and diagnoses of psychosis, mood/affective conditions, or a combination of mood instability and psychosis. • Understanding the inability to perceive the illness 29

Understanding Mental Illness A mental illness is a neurological condition or a disorder of the brain. People can experience symptoms that affect how they think, how they feel, and how they interact with and react to the world around them. It can create challenges in many areas of a person’s life (e.g., relationships, work, or school). Many individuals living with one of the mental illnesses included in the LINC program (i.e., schizophrenia, schizoaffective disorder, bipolar disorder, major depressive disorder) may also be experiencing symptoms of other mental disorders (such as anxiety or a substance use disorder) and are at an increased risk for other physical health conditions.1

CONTRIBUTING FACTORS TO MENTAL ILLNESSES Although we do not know the exact cause of mental illness, many people believe that there are two factors that contribute to the development of a mental illness. One factor is biological influences (i.e., genes, family history), which make it more likely that someone might first experience a mental illness during the teenage years or early adulthood. Very stressful or traumatic events in a person’s life (either in early life or what has happened recently) are a second factor that can lead to mental illness.

THE STRESS-VULNERABILITY MODEL2 The stress-vulnerability model can help us to understand what affects symptoms and how to cope with them. It explains both biological vulnerabilities and environmental stressors, both of which play a role in development of symptoms of a mental illness.

Biological vulnerability (family history, genes) Symptoms of Mental Illness

Stress

Biological vulnerability Biological vulnerability refers to people who are born with, or who develop very early in life, a propensity to develop mental illness. As with other disorders – such as diabetes, hypertension/high blood pressure, and heart disease – biological factors can increase the chance of having a mental illness. The chance of a person developing a mental illness is greater if they have a close relative with a mental illness. However, some people who have no family history of a mental illness still develop a mental illness (and vice versa). Use of substances increases the likelihood that an individual will either develop symptoms of a mental illness or will experience a worsening of symptoms that already exist, and brain injuries and viruses can also play a role in biological vulnerability.

Stress factors Stress can bring on the start of symptoms of a mental illness or can make symptoms of the illness worse. People experience stress very differently. Stress is unavoidable, but with effective coping skills, it can be successfully managed. Understanding the stress can help an individual learn how to handle it on a daily basis. Some factors that may lead to or contribute to stress are: •

Major life changes, such as losing a loved one, moving away from (or moving back) home, starting a new job, marriage or a new relationship, or having a child

•

Struggling with finances

•

Difficult living arrangements

•

Interactions with the criminal justice system

•

Misuse of substances

•

Feeling ill or tired

•

Being too busy; juggling several different tasks in a short time

•

Feeling bored or unstimulated

•

Being around people who regularly argue or criticize one another

•

Being the victim of a crime

You will notice that not all the stressors listed above are negative. Even positive life events can cause stress. Oftentimes stress factors and biological vulnerability together contribute to the development of a mental illness, and therefore treatment must address both.1

WHAT IS IN A NAME? THE PURPOSE OF DIAGNOSTIC LABELS Making diagnostic decisions can be very difficult. A provider (e.g., psychiatrist, psychologist, social worker, or counselor) determines a diagnosis by performing an assessment. Assessments include things like observing the individual, determining how current and past experiences align with criteria to make a diagnosis, and taking a thorough history (for example, asking the individual, and sometimes their loved ones, questions to better understand what is currently happening and what has happened in the past). A thorough assessment will include a lot of questions. Sometimes, a series of neurological and medical tests are performed (including lab tests and imaging as well as psychological assessments) if there is a question about what caused the condition. Providers must consider whether what an individual is experiencing is better explained by a medical condition, substance(s) used, or cultural, spiritual, or other family beliefs or traditions. Therefore, it is always important to share this type of information with the provider to help determine which (or if) a mental health diagnosis applies. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5; APA, 2013) is the guidebook used by providers to help determine the most appropriate diagnosis for an individual.3 A diagnosis is based on: •

How many and what kind of symptoms the individual experiences

•

Length of time the individual has experienced the symptoms

•

How much the symptoms interfere with the individual’s life on a daily basis

A diagnosis helps providers communicate information to one another about symptoms they observe or difficulties an individual might be having at a given time.

TREATMENT OPTIONS Mental illnesses are treated using a combination of the following: •

Medication to help with symptoms

•

Education to learn about a diagnosis and be informed about treatment options

•

Individual counseling

•

Education and support for loved ones

•

Symptom monitoring (being aware of and tracking symptoms) and developing relapse prevention plans

•

Discussing and practicing personal, social, and job skills

LINC can help you learn to better manage stress and symptoms. It can also help loved ones understand the illness and how to cope with their own stress – because everyone is impacted by a loved one’s mental illness, and everyone handles stress differently. It is important to remember that there are things that you and your loved ones can do to impact the course of the illness and outcomes.

A mental illness is no one’s fault. No one caused it, and no one is to blame for it. It is important to understand that a mental illness is just one part of a person. Sometimes the mental illness takes up more space in an individual’s life than other times, but the illness does not define the person. Everyone is unique and experiences symptoms of mental illness differently. As such, treatment must be individualized to the person. Because a mental illness is just one part of the whole person, this means that we must consider and treat all the parts that make up the whole person. The biopsychosocial model is the guide that describes the importance of addressing the psychological, social, and biological aspects of a person in order to achieve health and wellness.

The biological aspect of a person is often addressed with a psychiatrist, medical doctor, or nurse practitioner and addresses chemical imbalances and the medical/physical part of a person’s illness. In the context of the biopsychosocial model, we can see that taking medication may be a part of the solution, but it is not the only solution: we must address both the psychological and social aspects as well. The psychological aspect of an individual is often addressed with counselors or other mental health treatment providers. It examines things like how a person responds to stress, what are the best ways for a person to cope with stress, what challenges has this person faced, and how is that impacting their life currently. The social aspect of a person is what is happening around them and who is involved in their life. This includes things like relationships with others and what their current living situation is like. The biopsychosocial model is important for each of us – it is not limited to just those diagnosed with a mental illness. It also shows us how important relationships and the environment are to a person’s wellness. (This is where LINC comes in.)

UNDERSTANDING A PERSON’S EXPERIENCE Now that we have discussed the factors that contribute to both mental illness and personal wellness, it is important to review what a diagnosis means, why diagnoses are used, and what symptoms a person might experience when living with a mental illness. Mental illnesses and diagnoses are best understood by understanding the symptoms someone experiences. The label (diagnosis) communicates the combination of symptoms, how long they last, and what impact they have on the person’s everyday life. It is important that you and your loved ones understand that a diagnosis is simply a way for providers to communicate information about an individual’s experiences. A diagnosis is not intended to imply disability or to have implications about the whole person. The diagnosis does not convey information about you or your loved one’s unique circumstances, experiences, goals, or situation. It does not tell the whole story. As with any medical condition, a diagnosis is part of the whole person’s experience and the focus should be on wellness and recovery. We will discuss several diagnoses and their common symptoms. Your LINC clinician can help you to better understand the symptoms, experiences, and rationale for receiving a specific diagnosis. There is also a list of reliable sources included at the end of this section if you would like to learn more.

SYMPTOMS AND DIAGNOSES: PSYCHOSIS Let’s start with the basics about a group of symptoms sometimes referred to as psychosis. Psychosis is a set of neurological symptoms, not an illness or mental health disorder in and of itself. It has many causes and occurs when the brain is not processing information correctly. As a result, when an individual’s conscious mind tries to make sense of brain misperceptions (about self, others, and environment), psychosis occurs. Psychosis occurs when an individual has trouble perceiving and integrating information. Oftentimes, the psychotic experience is a reflection of the person’s life or life experiences. Psychosis symptoms3 include “positive” symptoms, “negative” symptoms, and cognitive symptoms. “Positive” symptoms. The addition of sensations or thoughts that typically would not be present. Two types of positive symptoms include hallucinations and delusions.

"POSITIVE" SYMPTOMS

Hallucinations (perceptions) Seeing, hearing, smelling, tasting or feeling things that other people say they are not perceiving

Delusions (beliefs) Fixed beliefs or ideas that others do not understand, such as plans others have to harm them, being followed or having special powers or purpose

“Negative” symptoms are the absence, reduction, or loss of energy and emotional expression. This includes things like: •

difficulty enjoying pleasurable activities,

•

low to no emotional expression on an individual’s face or in their tone of voice,

•

low to no motivation or energy,

•

limited responses (for example, one-or-two-word answers instead of conversation), or

•

sometimes inattention to personal care (e.g. grooming or dress). 37

Cognitive symptoms of psychosis include difficulty with thinking, memory, or decision-making, such as:

Difficulties Solving Problems Attention problems

Memory issues

Confusion

COGNITIVE SYMPTOMS

Trouble concentrating

Problems processing information and making decisions

Slow thoughts or responses

Problems thinking clearly

Racing thoughts

Unlike positive symptoms, negative and cognitive symptoms are often harder to recognize. Negative symptoms are often mistaken for depression, laziness, or other conditions. Both can feel very frustrating for the individual and their loved ones. Many psychotic experiences exist on a continuum with typical experiences; it is an extreme variation of common experiences. Many people experience psychosis at some point during their lifetime but are never diagnosed with a mental illness. This could include things like hearing voices when grieving a loss, when deprived of sleep, when exposed to trauma, or when using substances. Approximately 8% of people (in a U.S. sample who have not been diagnosed with a mental illness) reported hearing voices that others did not hear.4 Everyone has had an unusual experience at some point in their lives. So, if a person has ever felt suspicious, had an intrusive thought or feeling, or were startled when they thought they saw something out of the corner of 38

their eye, then it is easier to understand and relate to the experience of psychosis – just to a less intense, less pervasive, and shorter-lived degree. People are diagnosed with a psychotic disorder when the symptoms of psychosis persist over time and interfere with an individual’s daily life, relationships, and ability to perform roles and responsibilities. Diagnoses that involve psychotic experiences include, but are not limited to, schizophrenia spectrum disorders. Schizophrenia spectrum disorders include schizophrenia, schizoaffective disorder, and schizophreniform disorder. Schizophrenia is a disorder in which people experience psychotic symptoms for at least six months. Approximately 1.1% of the adult U.S. population meets criteria to be diagnosed with schizophrenia.5 Schizophreniform disorder is similar to schizophrenia, but the symptoms last for a shorter period of time. (We will discuss schizoaffective disorder below.)3 Psychosis can also be experienced with diagnoses other than schizophrenia spectrum disorders, including major depressive disorder, bipolar disorder, post-traumatic stress disorder, substance use disorder, and others. This means that, even if psychosis is present, this does not indicate that an individual will be diagnosed with a schizophrenia spectrum disorder. However, psychosis must be present to be diagnosed with schizophrenia. There are also medical conditions6 and medications7 that can cause psychotic symptoms for some people. If you have questions about this, we encourage you to speak with a psychiatrist, nurse practitioner, physician assistant, or other physician.

SYMPTOMS AND DIAGNOSES: MOOD Another group of symptoms that can be associated with mental illnesses are referred to as mood symptoms. Mood symptoms3 can include depression and mania. Depression is the “down” side of mood. This includes things like:

Loss of interest or pleasure in things once enjoyed

Sometimes thoughts or actions to try and die by suicide

Persistent sadness, hopelessness, helplessness guilt, worthlessness Sleeping too much, too little or not restfully

Depression

Increase or decrease in appetite

Symptoms

Difficulty concentrating

Crying, Irritability Low or no energy; Little to no motivation

Mania is the extreme “up” side of mood. This includes things like: •

being abnormally upbeat

•

increased activity, energy, or agitation

•

racing thoughts

•

exaggerated sense of well-being and self-confidence (euphoria)

•

decreased need for sleep (does not sleep and does not feel tired)

•

much more talkative than usual

•

increased impulsive (and sometimes dangerous) activities (like spending, gambling, sexual activity)

•

distractibility.

Mood disorders are those conditions in which the underlying problem primarily impacts a person’s mood or emotional state.8 With mood disorders, your mood is inconsistent or incongruent with your current situation (e.g., winning a big game but still feeling sad and alone), and your mood interferes with how well you function and navigate your daily life. A person might feel very down (sad or empty), appear to be very irritable for no identifiable reason, or be excessively happy at unusual or unexpected times. An estimated 21.4% of adults in the U.S. will experience a mood disorder at some time during their lives. The prevalence of mood disorders is higher for women than for men in both adolescents and adults.8 Diagnoses that involve mood symptoms include, but are not limited to, major depressive disorder and bipolar disorders. There are two types of bipolar disorders: bipolar I disorder and bipolar II disorder. In order to be diagnosed with bipolar I disorder, an individual must have experienced a manic episode at some point in their lifetime. Although common, major depressive episodes are not required for a bipolar diagnosis. Approximately 2.2% of the adult U.S. population meets criteria for bipolar disorder.9 Bipolar II disorder is similar to bipolar I disorder, but instead of a manic episode, an individual must have experienced a major depressive episode and at least one hypomanic episode. Hypomania is similar to mania, but the episode is not severe enough to cause major interruptions or problems with school, work, or relationships and would not require hospitalization. Major depressive disorder is different from normal sadness or grief because it keeps a person from functioning normally in their everyday life. It is not always brought on by life stressors that are typically associated with grief or sadness (e.g., loss of a loved one, divorce, news of a serious illness); it can occur suddenly and without warning. In order to be diagnosed with major depressive disorder, a person must experience a number of symptoms during the same two-week period, and they must experience a depressed mood most of the day or loss of interest and pleasure.3

Like psychosis, many experiences of a mood disorder exist on a continuum with typical experiences; it is an extreme variation of common experiences. Many people experience symptoms of a mood disorder (feeling down or feeling up and energized, often without explanation) at some point during their lifetime but are never diagnosed with a mental illness. This could include feeling very down, lacking energy or interest in engaging in life’s activities, or withdrawing from friends and loved ones when grieving a loss. Everyone has experienced mood symptoms at some point in their lives. So if a person has ever felt extremely sad, overly energized, not interested in things they typically enjoy, or are very talkative and struggling to keep their thoughts on track, then it is easier to understand and relate to the experience of a mood disorder – just to a less intense, less pervasive, and shorter-lived degree. People are diagnosed with a mood disorder when the changes in mood persist over time and interfere with an individual’s daily life, relationships, and ability to perform roles and responsibilities.

SYMPTOMS AND DIAGNOSES: MOOD PLUS PSYCHOSIS Sometimes people experience both mood symptoms and psychotic symptoms together. Bipolar I disorder with psychotic features, major depressive disorder with psychotic features, and schizoaffective disorder involve both mood and psychotic symptoms. In both bipolar I disorder with psychotic features and major depressive disorder with psychotic features, the mood symptoms are the primary issue that are causing the individual distress. With schizoaffective disorder, the psychotic symptoms are primary. Although an individual experiences both mood symptoms and psychotic symptoms, the primary symptom is what is observable before the other symptoms are present, and what often persists after the other type of symptom improves. For example, in schizoaffective disorder, an individual must experience certain symptoms for schizophrenia but also experience a major mood episode (either depression or mania) that is present for the majority of the psychotic experience – but not for the entire duration of the psychosis. Bipolar I disorder with psychotic features, on the other hand, is diagnosed when an individual is experiencing a major depressive episode or a manic episode, but then begins to experience psychosis at some point during the episode. However, when the individual is no longer experiencing the mood symptom (mania or major depressive episode), the psychotic symptoms are no longer present.3

ANOSOGNOSIA With psychotic and mood disorders (i.e., bipolar I disorder), some individuals do not have the ability to see they are experiencing symptoms of a mental illness. Anosognosia is a symptom of severe mental illness that impairs a person’s ability to understand and perceive their illness.10,11 Anosognosia is actually the result of anatomical damage to the brain because of the disease process itself. It is not denial, opposition, or a lack of readiness or understanding.11 It does not involve injury or damage to a specific part of the brain; rather, it involves the brain network. Anosognosia impacts 50% of individuals diagnosed with schizophrenia and 40% of individuals diagnosed with bipolar disorder.10 It is important to understand that this symptom and the resulting lack of acceptance of a diagnosis do not indicate denial or “being difficult.” Anosognosia is the primary reason why individuals diagnosed with schizophrenia or bipolar disorder refuse treatment (including medication).10,11 This makes sense when we understand that anosognosia is a symptom of the illness for many individuals. If a person does not believe they have an illness, why would they be open to receiving treatment for something that does not exist?11 Your LINC clinician and other providers can assist you and your loved ones if you are struggling to get on the same page about diagnosis and treatment. Remember, even if we do not agree on how to get there, we can all agree that we want everyone involved living their happiest and healthiest lives!

Understanding Mental Illness

In this section, you have learned: • A mental illness is a neurological condition or a disorder of the brain. People can experience symptoms that affect how they think, how they feel, and how they interact with and react to the world around them. • It is believed that two factors contribute to the development of a mental illness: biological influences and stressful or traumatic life events. • Diagnostic decisions are often quite difficult and are never taken lightly. Diagnoses are made to help providers communicate information. • Treatment options are numerous, and a combination of treatment approaches often best assist an individual (and their loved ones). • A mental illness is no one’s fault. No one caused it, and no one is to blame for it. The biopsychosocial model is a useful guide to underscore the importance of treating all aspects of an individual. • Psychosis is a set of neurological symptoms, not an illness or mental health disorder in and of itself. It has many causes and occurs when the brain is not processing information correctly. 44

In this section, you have learned: • A person may experience experiencing psychosis: positive, negative, and cognitive symptoms with psychosis. Diagnoses that fall in this category include, but are not limited to, schizophrenia-spectrum disorders, such as schizophrenia and schizophreniform disorder. • Mood disorders are those conditions in which the underlying problem primarily impacts a person’s mood or emotional state. With mood disorders, a person’s mood is inconsistent or incongruent with their situation. A person may experience symptoms of depression or when experiencing a mood or affective condition. Diagnoses that involve mood symptoms include, but are not limited to, major depressive disorder and bipolar disorders. • Some individuals experience both symptoms of psychosis and mood instability. Diagnoses that involve both mood and psychosis symptoms include bipolar I disorder with psychotic features, major depressive disorder with psychotic features, and schizoaffective disorder. Diagnostic determination is made based on which symptom is still present when the other symptom has subsided. • With psychotic and mood disorders, some individuals do not have the ability to see they are experiencing symptoms of a mental illness. Anosognosia is a symptom of severe mental illness that impairs a person’s ability to understand and perceive their illness. Anosognosia is not denial, opposition, or a lack of readiness or understanding. This condition and the resulting lack of acceptance of a diagnosis do not indicate denial or “being difficult.” Anosognosia is the primary reason why individuals diagnosed with schizophrenia or bipolar disorder refuse treatment.

Understanding Mental Illness

Sources: 1Goodell,

S., Druss, B.G., & Walker, E.R. (2011). Mental disorders and medical comorbidity. Robert Wood Johnson Foundation, The Synthesis Project, Policy Brief No. 21. 2Glynn, S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf. 3American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, D.C.: American Psychiatric Association. 4Hayward, M. & Strauss, C. (2012). Overcoming distressing voices: A self-help guide using cognitive behavioral techniques. London: Robinson. 5National Institute of Mental Health. (2016). Schizophrenia. Retrieved from https://www.nimh.nih.gov/health/statistics/prevalence/schizophrenia.shtml . 6Hall, R.C., Popkin, M.K., Devaul, R.A., et al. (1978). Physical illness presenting as psychiatric disease. Archives of General Psychiatry, 35(11), 1315-1320. doi: 10.1001/archpsyc.1978.01770350041003 7Ambizas, E.M. (2014). Nonpsychotropic medication-induced psychosis. U.S. Pharmacist, 39(11), HS8-HS15. 8National Institute of Mental Health (NIMH), National Institutes of Health (November 2017). Retrieved from https://www.nimh.nih.gov/health/statistics/any-mood-disorder.shtml. 9National Institute of Mental Health. (2016). Bipolar disorder among adults. Retrieved from https://www.nimh.nih.gov/health/statistics/prevalence/bipolar-disorder-amongadults.shtml. 10Treatment Advocacy Center (TAC). Anosognosia. Retrieved from https://www.treatmentadvocacycenter.org/key-issues/anosognosia. 11Amador, X. (2012). I am not sick, I don’t need help!: How to help someone with mental illness accept treatment. New York: Vida Press, L.L.C. 46

Treatment Option: Medication Included in this section: • Types of Medications • Preparing a Medication List In this section, you will learn about: • Medications as one common aspect of treatment • Different types/categories of medication • The importance of discussing medication use and concerns with the appropriate treatment provider

Treatment Option: Medication One aspect of treatment that is common for many individuals living with a mental illness is the use of medication. When taken as directed, medications can: •

reduce the length and severity of many symptoms

•

reduce rates of symptoms relapse and return to the hospital

•

help the body improve its ability to tolerate stress and with sleep

•

help to regulate emotion, focus attention and improve motivation and

•

help other treatments, like talk therapy, become more effective.

Medications are some of the most powerful tools available for reducing symptoms and the risk of a relapse, and they are often one part of the treatment plan. The long-term goal is often for an individual to be on the fewest medications at the lowest effective dose. It is important to remember that it will take time for the medications to work. Some people begin to experience improvements within a few days of starting a medication. Many people find that the benefits unfold over the course of weeks or months. Medications reinforce the benefits gained from other treatments. Those who get the greatest benefits from their medications are usually those who: •

take their medications consistently

•

stay physically active and

•

participate in other therapeutic activities.

Each person may have different beliefs about the use of medication based on their culture, family background, and personal experiences. This is why it is so important to talk with treatment providers so they can better understand what has been tried in the past, which medications did (or did not) work, and what may make an individual and their loved ones hesitant to try various medications. 49

TYPES OF MEDICATIONS TYPES OF MEDICATIONS Antipsychotics

Mood stabilizers Antidepressants

Anticholinergics

USE OF MEDICATIONS Used to treat symptoms of psychosis. They help with hallucinations, problems with thinking, delusions, paranoia, and mood symptoms. Chemical messengers (called neurotransmitters, for example, dopamine, glutamate, and serotonin) are associated with symptoms of mental illness including psychosis. Dopamine is involved in telling the brain what is relevant or important and requires attention. Dopamine production goes into overdrive during psychosis. It is also known that stress, trauma, and drugs (e.g., marijuana, amphetamines) amplify the dopamine system – which is already more active during psychosis. Too much dopamine creates misperceptions about what is important. Psychosis occurs when the mind is trying to make sense of what is important, which is confusing when there are misperceptions that everything is important and deserving of attention. Medications can help to rebalance the chemical signals to correct misperceptions about what is important.1 Used to treat mood symptoms and help to balance one’s mood and prevent manic episodes Used to treat depressive symptoms, such as feelings of sadness or hopelessness. Can help to reduce or prevent some of the unwanted side effects from other medications. They can also help with sleep and concentration. Used to help to reduce or prevent some of the unwanted side effects from other medications

It is important to understand that all medications have risks and to be aware of potential side effects of medication. There are different side effects for different medications. Not everyone experiences all (or any) side effects. It is important to weigh the potential risks against the potential benefits, taking into account safety measures (e.g., appointments with the psychiatrist, bloodwork, loved one being aware of what to look out for, medications to treat undesirable side effects) that can be put in place if you choose to take medication. If you start to experience side effects (or what could be a side effect) from any medications, contact the psychiatrist, nurse practitioner, or physician assistant as soon as possible.2 There are many different types of medications in each of the categories listed above. Some medications have both oral (pill) and long-acting injectable options. Long-acting injections can eliminate the hassle of having to remember to take the next dose. Many people appreciate not having to think about medications as often. Long-acting injections often allow for lower doses of medication over time and can greatly reduce the risks of symptom flare-ups. Speak with the psychiatrist, nurse practitioner, or physician assistant to determine which medications (and at what dosages) are the best fit, as well as the delivery of medication that will best fit your needs and goals. 2 50

PREPARING A MEDICATION LIST Which medications are currently prescribed or have been taken in the past, and why? What symptoms were helped by the medication? What side effects were experienced?

Medication Name

Medication Purpose

Benefits

Side Effects

Loved one’s perspective: What medications or side effects might you add? How do you recall your loved one feeling while taking these medications? Did you notice any changes while your loved one was on the medication?

It may be helpful to take this information with you to your next appointment with the psychiatrist, nurse practitioner, or physician assistant so you can talk about – and expand on – the medication information discussed during this session.

Because the LINC clinician is not a physician, it is very important for you to talk with the psychiatrist, nurse practitioner, or physician assistant about what medications are being taken, the purpose of the medication, what to expect while taking this medication, and what to do if you or your loved one is experiencing any negative side effects.

Treatment Option: Medication In this section, you have learned: • Medications can reduce the length and severity of many mental illness symptoms and, when taken as directed, they can reduce rates of symptoms relapse and return to the hospital, help individuals improve the ability to tolerate stress, regulate emotions or focus attention. Medications can also help other treatments, like talk therapy, become more effective. • Medications are some of the most powerful tools available for treatment, and they are often one part of the treatment plan. It will take time for the medications to work. The long-term goal is often for an individual to take the fewest medications at the lowest effective dose. • Some of the categories of medications used to treat mental illness symptoms are antipsychotics, mood stabilizers, and antidepressants. Some medications have both oral (pill) and long-acting injectable options. • It is important to be aware of potential side effects of medication, weigh the potential risks against the potential benefits, and to communicate with your treatment team when there are questions or concerns. 53

Treatment Option: Medication

Sources: 1

Messamore, E. (2019). How meds work and how they can help. (Unpublished worksheet.)

Glynn, S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf.

Stress Management and Coping

Included in this section: • • • • •

Signs and Impact of Stress Reducing Stress Techniques for Coping with Stress Understanding Your “Stress Bucket” Understanding Your Shared “Stress Bucket”

In this section, you will learn about: • How stress impacts everyone differently • How stress can be both positive and negative • How stress can impact a person’s physical body, thoughts, feelings, and behaviors • Effective versus ineffective coping strategies

Stress Management and Coping In addition to medication, other aspects of a treatment plan assist with managing stress and preventing the return or worsening of symptoms. Let’s discuss how stress affects us and look at some of the techniques to help us overcome stressful life events. A mental illness can be stressful for everyone involved, not just the individual with the diagnosis. Those who care about the individual can be impacted in a number of ways (e.g., stress, grief, time and energy, financial resources). Stress affects each of us differently and can impact us differently at different points in our lives, depending on what else is happening in our environment at that time. However, we know that when we feel better mentally and physically, we are better able to pursue goals, engage in healthy relationships, etc. We also know that when we are doing well, we are better able to support those around us.

SIGNS AND IMPACT OF STRESS1 Stress affects the body in many ways in both the short- and long-term. It can be caused by life events or pressures, such as one’s own goals or other people’s expectations. Stress is the body’s natural response to change – it is normal and natural. It can be both positive and negative. Stress that is usually considered positive could include things like marriage, birth of a child, a new job, moving to a new home, or going on vacation. Negative stress can include things like the loss of a loved one, divorce, loss of a job, money problems, or expecting too much of oneself. Signs and symptoms of stress include changes in the body, changes in thoughts and feelings, and changes in behavior. It is important to recognize signs and symptoms of stress in ourselves and our loved ones so we can respond appropriately:

BODY

THOUGHTS AND FEELINGS

• • • • • • • •

Blushing Gritting teeth “Butterflies in the stomach” Clenched fists Sweaty palms Fast breathing Heart pounding Trouble sleeping

• • • • •

Anxiety Fear Being tired Reduced concentration Irritability

• • • • • • •

BEHAVIOR

Pacing Crying Lashing out at others Reduced coping or problem-solving Poor work performance Alcohol or drug abuse Missing work or school

REDUCING STRESS1 Long-term effects of stress can include things like headaches, ulcers, heart disease, arthritis, high blood pressure, cancer, or diabetes.1 Individuals can better understand their bodies and how they respond to stress by: •

making lifestyle changes;

•

managing expectations; and

•

frequently revisiting and modifying priorities and goals.

This allows individuals to be proactive in their lives by balancing stressors and demands with selfcare and what works best for them to keep them healthy. Relaxation techniques and coping strategies are helpful for when stress inevitably occurs. We all deal with stress every day. Sometimes the stressors have a major impact on our lives and at other times stressors are more common daily frustrations. Because we will all encounter stress regularly, it is important that we are prepared to cope with that stress to avoid becoming overly stressed and overwhelmed. There are many healthy and effective ways to cope with stress to avoid symptom relapse – or to help should a relapse occur.

SOME STRATEGIES TO REDUCE STRESS • Staying healthy. Eat healthy foods; get enough rest and sleep; exercise regularly; do things you enjoy; avoid alcohol, drugs, and tobacco • Learning to recognize and plan for stress. Know what causes you stress; avoid stressful situations when you are not feeling your best, if possible; do not plan so much that tasks become overwhelming; minimize background “noise” (actual noise or unnecessary or disruptive activity) at home; look to loved ones for support • Relaxing regularly. Learn and use relaxation techniques; make time for hobbies and leisure activities •

Thinking about things from a new perspective. Practice modifying “self-talk” (thoughts about self) and learn to be gentler with yourself; work towards changing undesirable or unwanted behaviors 1 59

INEFFECTIVE COPING STRATEGIES The ways we deal with stress are not always the most effective or healthiest ways for us to cope in the long-term. Sometimes people will: •

misuse substances

•

binge eat or eat lots of unhealthy foods

•

engage in reckless behaviors

•

work too much

•

engage in self-harm behaviors

These are known as ineffective coping strategies: they make an individual feel better at the moment (or in the short-term), but in the long-term, the individual’s original stress or problem is still there, and now they often feel guilty or ashamed for engaging in the undesirable behavior (ineffective coping strategy).

TECHNIQUES FOR COPING WITH STRESS The list of effective or healthy coping strategies is long and unique to each individual. Some examples might include going for walks, spending time with friends, engaging in the arts, having a warm bath, watching television, cleaning, reading, making a list of things you are thankful for, praying or mediating, or volunteering. Whatever the strategy, it is considered an effective or healthy coping strategy because it helps the individual to feel better and less stressed both in the moment and over time. There are special techniques that, with practice, you can do in times of stress to help decrease your response to stress and make you better prepared to respond to and manage the stressful situation. Some techniques include relaxed (deep) breathing, mindfulness, and progressive muscle relaxation. Let’s review some of the basics and try them together.

Relaxed (deep) breathing Taking a moment to focus on breathing can be a great way to slow your body and mind, giving you a few precious moments to regroup and calm anxieties and fears. A technique for focused breathing involves taking in a slow, deep breath through your nose for several seconds (inflating your belly like you are inflating a balloon), then slowly releasing that breath through your mouth (for several seconds, paying attention to your belly as though you are deflating the balloon). It is sometimes helpful to lie flat on your back (or sit up in your chair) and place one hand on your chest and one on your belly so you can feel the inflating/deflating of each breath. Repeat this exercise several times until you feel your heartrate decreasing and your mind becoming calmer and quieter.

Mindfulness To be a mental state where you are present in the moment, fully engaged in your mind and bodily experience at the present time. There are many techniques that can help to center you and help you to focus on what you are experiencing in the present moment. Mindfulness exercises help you to feel intune with each of your five senses as a way to focus inward rather than outward on the stressor. It offers you a moment to step away from the stress, grounding and centering you so that you feel calm and better equipped to manage the stressful situation.

One of the most common strategies involves observing your immediate experience, both inside your body as well as what is going on around you. While seated comfortably, focus your attention first on what is around you, considering the experience of all five senses. What do you smell, hear, see, feel, or taste? Pay attention to the little things, either those things that are so insignificant that you have never noticed them before or those that are so common you have gotten used to them (such as the hum of the overhead lights). Notice the colors and shapes around you, instead of the objects themselves. Next, close your eyes and allow your other senses to take over. What does the chair feel like against your skin? Do you feel the breeze from the air conditioning/heating vent? Next, move inward to focus on your internal experience in the moment. Do you feel an internal sense of calm and quiet?

Progressive Muscle Relaxation A technique in which you learn to relax each muscle group throughout your body by first tensing and tightening each muscle group in the body, one by one.

Ideally, progressive muscle relaxation techniques are done lying flat on your back with your palms facing up and your feet slightly apart. However, you can also begin to practice by sitting comfortably in your chair. Start by paying attention to your breathing, breathing in through your nose and out through your mouth. Next consider how your body is feeling, where you have any aches or pains, what your clothes feel like against your skin. The last part of this exercise involves moving through each part of your body, tensing and releasing the muscle groups. You will start at your toes and slowly move up through your entire body, finally reaching the top of your head. Starting with your feet, tense/tighten the muscles of that area and hold this tension for several seconds, then slowly release the tension and relax the muscle group. If you are still feeling tension in this area, repeat the tensing/releasing exercise before moving on to the next muscle group/area of the body. Pay attention to each area of the body in order (feet, lower legs, thighs, pelvic region, abdomen and lower back, middle back, upper back and arms, hands, neck, face and head), one by one. Do you feel any stress, tension, soreness, discomfort, or weight in a certain area? Once you finish, your body should feel lighter and your muscles more relaxed.

DISCUSSION QUESTIONS - TECHNIQUES FOR COPING WITH STRESS

Which of these techniques seems most appealing to you?

Which technique would you like to try next time you are feeling stressed or overwhelmed?

DISCUSSION QUESTIONS - TECHNIQUES FOR COPING WITH STRESS

How might your loved ones be helpful to you when you are feeling stressed?

UNDERSTANDING YOUR “STRESS BUCKET” As we have discussed, everyone deals with stress in their daily lives. Everyone handles stress differently and has different capacities for handling stress. Both stress and our capacity to handle it changes over time and in various circumstances. Let’s put together what we have learned about stressors and coping skills (both effective and ineffective strategies) to complete the activities below. These activities will help each of you as individuals, and all of you as a group, take a look at what causes you stress and what you can each do to help and support one another. Using the visual aid of a “Stress Bucket” (originally developed by Brabban & Turkington, 20022 and adapted by the BeST Center) can be a helpful way to think about how stress impacts us as individuals, and as a family system/unit. In the Stress Bucket illustration: The water in the bucket illustration represents stress. The bucket represents vulnerability. Everyone’s stress (water) and vulnerability (bucket) are different. Think of the bucket as a person’s ability or capacity to hold or handle stress (vulnerability). If the amount of stress (water) flowing into the bucket is more than the person can handle (greater than the size of the person’s bucket), it will overflow. They may begin to develop signs and symptoms of stress. By decreasing the amount of stress (water streaming into the bucket from different sources) – or by developing effective coping strategies (the spigots/taps in the bucket allowing water to flow out) – the bucket will be less likely to overflow, and symptoms of stress will decrease. However, by engaging in unhealthy or ineffective coping strategies (e.g., using alcohol or drugs), a person might feel better for a short period of time, but the stress/challenges are still there when the effects of the unhealthy coping strategy are gone. This is represented by the hose because, though it removes some of the water (stress) initially, it ultimately puts the water (stress) back in the bucket. By looking at the stressors (water flowing into the bucket) individually, it can help an individual to identify where they have more ability to control the amount of stress going into their bucket. It may also be useful to rate how bothersome each stressor (source of water flowing into the bucket) is on a scale from 1 (minimally distressing) to 10 (highly distressing), so that coping strategies can be identified to help with those that are the most troublesome.

YOUR STRESS BUCKET

Stress:

Effective coping strategies:

Short-term or ineffective coping

Symptoms of stress

Vulnerabilities:

EXAMPLE STRESS BUCKET Let’s look at an example: Mary is a parent who works full time and has been finding it increasingly difficult to manage responsibilities due to a recent increase in her mood symptoms, which are sometimes accompanied by feelings of mistrust and uneasiness. Mary was diagnosed with bipolar I disorder with psychotic features several years ago. Typically, she manages her stress and symptoms well through the use of individual therapy, medications, spending quality time with her children, and having some quiet to herself time each day. However, she recently was laid off, is unhappy in her romantic relationship, and is frustrated that her son is not doing well in school. She has found that drinking a couple of glasses of wine and smoking cigarettes during her quiet time each day is relaxing for her. She also has been eating less healthy and instead has been choosing sugary snacks and drinks and quick, cheap meals during the day. Mary has a history of difficult relationships that began with her own parents and have carried into her romantic relationships. She has a sister and close friend that she goes to for support, but she finds herself feeling as though they are talking about her behind her back. She recently began pulling away from them and her children. She also began sleeping for many hours at night and taking naps during the day to avoid the uncomfortable feelings she is experiencing and to not think about all the stress. Stress: Difficultly with relationships, in part due to an increase in mood and psychosis symptoms recently

Stress: Recently laid off (financial)

Effective coping strategies: Medication and individual therapy, quiet time, enjoyable activities with her children

Short-term or ineffective coping strategies: Withdrawing from loved ones who offer support, unhealthy eating habits, substance use, sleeping to avoid

Symptoms of stress

Vulnerabilities: History of problematic romantic relationships, poor relationships with parents

DISCUSSION QUESTIONS – YOUR STRESS BUCKET How might Mary’s current stressors and increased use of ineffective coping strategies be impacting her mental and physical health? Her relationships? Her ability to complete daily tasks and overcome challenges?

________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________

What is one thing Mary might consider doing differently to improve her level of stress or her ability to handle current stressors?

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

YOUR STRESS BUCKET Think about the following questions as you begin to complete your Individual Stress Bucket. Stress: What are some of the stresses you are facing right now?

Symptoms of stress: How have you been disrupted by these stresses?

Vulnerabilities: What are some of your vulnerabilities?

Effective coping strategies: What coping strategies are you currently using to deal with these stresses? Which of these strategies have you found to be effective?

Ineffective coping strategies: Are some of your current coping strategies making things more difficult over time (rather than easier)?

DISCUSSION QUESTIONS Consider how your current stresses and use of ineffective coping strategies may be impacting your mental and physical health, relationships, and ability to complete daily tasks and overcome challenges.

What is the one thing you might consider doing differently to improve your level of stress or your ability to handle current stresses?

UNDERSTANDING YOUR SHARED STRESS BUCKET3 Family systems are not that different. A family is a system of individuals. Systems operate just like individuals operate: They can become stressed which leads them to not operate with the best efficiency. These systems can share stressors – or share the impact of a stressor on one individual in the system. Sometimes the family will use coping skills that it thinks will help, but often the problem seems to get worse anyway. Families can also share vulnerabilities and resilience. All families have things they do well (resilience) and things they seem to struggle with routinely (vulnerabilities). For example, one family may be very organized (resilience), but not very emotionally supportive during times of stress (vulnerability). It is very helpful for families to understand where they might have vulnerabilities, as well as to have a good grasp of what their strengths are so they can utilize these strengths to get through difficult times. When one family member is not doing well mentally and/or physically, the entire family – and all those who are natural supports – are affected. This means that the family as a unit must work together to make sure that the family not only survives but thrives. This is true for medical and mental health struggles alike. If someone in the family is recently diagnosed with cancer or depression, how the family operates will likely need to be adapted, at least for a period of time. In fact, before a diagnosis is even made, a person is often not feeling at their best for quite some time without knowing what is going on inside him/herself. The person might be tired all the time, irritable, and not following through on responsibilities. This can be very frustrating to other members of the family who feel like the person is “just being lazy” and “needs to snap out of it.” Other members of the family might also be concerned and try to take on additional responsibilities while their loved one is “just not him/herself.”

YOUR SHARED STRESS BUCKET3

Interpersonal stress:

Other/general stress:

Resilience: Ineffective coping strategies:

Effective coping strategies:

Vulnerabilities: Symptoms of stress/family disruptions

EXAMPLE: SHARED STRESS BUCKET3 Let’s look at an example: Dad is feeling depressed and unable to work, which leads to financial stress. Communication breaks down (family disruption) because the family does not know how to discuss what is going on. They often avoid discussing what is happening with dad (ineffective coping strategy) because bringing this up when they are already feeling frustrated leads to tension and arguments. The children are coping fairly well and continue with school activities and spending time with friends (coping skills). They are worried about dad (stress), but they do not understand the extent to which the family is struggling. Mom had to give up yoga (what she used as a coping skill) for financial and time constraints. She recently picked up her smoking habit to help “calm her nerves” (ineffective coping strategy). Dad knows something is wrong but does not go to the doctor to figure out what it is. This leads to arguments with his wife. Dad stopped running and turned to drinking a couple of beers at night and staying in his room (ineffective coping strategies). This concerns mom because she knows dad has a history of addiction in his youth (vulnerability). Mom and dad have been married for 25 years and there is a lot of love and support in this family (resilience). Mom wants dad to figure out what is leading to his change in behavior, and even though there is tension between them, they have decided to talk with a counselor (resilience). Other/general stress: Financial strain, no time to go running (dad), no time for yoga (mom)

Interpersonal stress: Kids’ worries about dad, arguments between parents

Resilience: Loving and supportive family, talking with a counselor

Ineffective coping strategies: Drinking beers (dad), smoking (mom), avoid discussing dad’s mental health

Symptoms of stress/family disruptions

Vulnerabilities: History of addiction (dad)

Effective coping strategies: Spending times with friends (kids), continuing in activities (kids)

YOUR SHARED STRESS BUCKET3 Learning how to manage an illness is hard for the person who is living with it – and for those who care for this person. Think about the following questions as you and your loved ones begin to complete your Shared Stress Bucket. These questions can help everyone involved begin to form a plan of action that will reduce stress and symptoms for both individuals and loved ones. Stress: What are some of the stresses you and your loved ones are facing as a group right now?

Symptoms of stress: How have you and your loved ones been disrupted by these stresses?

Vulnerabilities: What are some vulnerabilities of your group?

What are some ways you and your loved ones demonstrate resilience?

Effective coping strategies: What coping strategies are you and your loved ones currently using to deal with these stresses? Which of these strategies have you found to be effective?

Ineffective coping strategies: Are some of you and your loved ones’ current coping strategies making things more difficult over time (rather than easier)?

Consider how your current stresses and use of ineffective coping strategies may be impacting your mental and physical health, relationships, and ability to complete daily tasks and overcome challenges. New coping strategy: What is one thing you and your loved ones might consider doing differently to improve your levels of stress or your ability to handle current stresses?

Stress Management and Coping

In this section, you have learned: • Mental illness can be stressful for everyone involved, not just the individual with the diagnosis. • Stress affects each of us differently and can impact us differently at different points in our lives. It affects the body in many ways in both the short- and long-term. It can be both positive and negative. • Signs and symptoms of stress include changes in the body, changes in thoughts and feelings, and changes in behavior. It is important to recognize signs and symptoms of stress in ourselves and in our loved ones. • Sometimes the stressors have a major impact on our lives and at other times stressors are more common daily frustrations. • There are many healthy and effective strategies to reduce stress, though sometimes individuals deal with stress in less than healthy ways. These ineffective coping strategies often make a person feel better in the moment, but they actually contribute to more stress long-term.

Stress Management and Coping Sources: 1

Family Institute for Education, Practice, and Research. (2011). Consumer Centered Family Consultation. Unpublished manual. University of Rochester Medical Center, New York. 2Brabban,

A. & Turkington, D. (2002) The Search for Meaning: Detecting Congruence between Life Events, Underlying Schema and Psychotic Symptoms. In: A Casebook of Cognitive Therapy for Psychosis. (ed. A.P. Morrison), pp. 59-75. Hove: Brunner. 3

Hupp, D., Sivec, H., & Kreider, V. (2018). Family/shared stress bucket activity. Best Practices in Schizophrenia Treatment (BeST) Center, Northeast Ohio Medical University (unpublished worksheet, adapted from Brabban, A. & Turkington, D. (2002)).

Relapse Prevention

Included in this section: • • • • • •

Relapse Environmental Cues Early Warning Signs Preventing Relapse Decreasing the Chance for Symptoms Relapse Monitoring Symptoms and Checking In

In this section, you will learn about: • How to identify and prevent a symptom relapse • The role of stress and other factors that contribute to a symptom relapse • The importance of being proactive to avoid or minimize the impact of a symptom relapse

Relapse Prevention

RELAPSE Life can be stressful. Therefore, it is extremely important that we all are able to recognize and manage the stress in our lives in order to avoid becoming overwhelmed or physically and mentally unwell. Those around us are often able to see when we are feeling stressed, sometimes before we even recognize it ourselves. For this reason, it is also important that our loved ones have a solid understanding of things we find stressful, how we typically cope with our stress, and how to provide helpful support in times of high stress to avoid unwanted consequences of that stress. When symptoms of a mental illness return or worsen (what we call relapse), it impacts both the individual living with the mental illness as well as those around them. However, it does not mean there has been a failure on anyone’s part. Nor does it mean that the individual is unable to recover. Sometimes a relapse requires a hospitalization, while at other times the individual and loved ones are able to manage the worsening of symptoms at home. It is important for everyone to be on the same page, have support during this time, and be knowledgeable about effective ways to be involved. Below we will discuss ways to prevent, plan for, and cope with relapse should a return of symptoms occur.

ENVIRONMENTAL CUES Levels of stress and symptoms vary in intensity over time and are influenced by what is happening in a person’s life at that particular time. It is important we understand what is in a person’s environment causes them distress and what early warning signs let them know that symptoms are starting to return or worsen. Environmental stressors or cues are those things in a person’s environment or life that can lead to increased stress or over-stimulation. This, in turn, can sometimes lead to a return or worsening of symptoms if not promptly addressed. Sometimes there are certain situations that consistently cause an individual to feel stressed. These might include a loud household, lack of sleep, misuse of substances, changing or stopping medication, a disagreement with a loved one, or something new happening in one’s life.1 We all have things that make us feel stressed or overwhelmed at times, and it is important that we are able to identify those stressors so we can prevent them or decrease their impact on our lives.

What are some things in your life or environment that lead you to feel stressed?

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

What do you notice that causes stress for your loved ones (participating in LINC)?

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

EARLY WARNING SIGNS Once we have an idea of what leads us to feel stressed, we must also be able to identify the signs or signals that tell us we are starting to feel overwhelmed, overly stressed, or a return or worsening of symptoms (relapse) is about to occur. These are called early warning signs, and they are different for every person. For one person, their hands might become shaky and their voice quivers; for another person, they may get irritable and withdraw from those around them. Early warning signs are those things that let the individual and those around them know that symptoms are returning or getting worse. They can be behavioral changes that others can see or internal changes that the individual can feel. Intervening early and effectively decreases the likelihood that a full symptom relapse will occur or become severe. Loved ones are very important in identifying early warning signs because those around us are able to see things from a different perspective, sometimes observing what we do not always see about ourselves.

• Rapid or dramatic changes in mood or being irritable • Neglecting some aspects of self-care Early Warning Signs

• Pulling away from family, friends, work, or school • Difficulty with daily tasks • Sleeping more or less than what is typical • Starting or increasing the use of substances • Subtle increases in symptoms • Engaging in unusual or atypical behavior

DISCUSSION QUESTIONS – EARLY WARNING SIGNS

What are some ways you are able to tell when you are becoming overwhelmed, overly stressed, or a relapse is about to occur?

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

What are some of the ways you identify when your loved ones (participating in LINC) are becoming overwhelmed, overly stressed, or a relapse is about to occur?

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

In the Communication section, we discuss the importance of effective communication. Effective communication helps us to appropriately convey our concerns to one another, including concerns that a loved one appears to be overly stressed or experiencing a return of symptoms.

PREVENTING RELAPSE1-4 Relapse is a return or worsening of symptoms and can happen at any time for a variety of reasons. Being proactive and preventing a relapse is always preferred over-reacting and responding after symptoms have returned, worsened, or when a crisis situation has occurred. There are many things that you and your loved ones can do to avoid relapse or to minimize its impact should a relapse occur. Sometimes, symptoms return or worsen regardless of support or intervention. Therefore, it is important that each person understands what relapse looks like for a particular individual and how they can be of most help to that individual. There are proactive steps that you can do in advance to try to prevent or reduce the impact of a relapse. These include, but are not limited to: • • • • • • • • • • • •

Learn as much as possible about the mental illness. Be aware of individual symptoms. Notify a psychiatrist, nurse practitioner, physician, or other members of your team when symptoms change. Learn your early warning signs and environmental stressors that lead to an increase of symptoms. Be conscious of stress and be prepared to use coping strategies that you have identified as being effective for you. Participate in treatments and activities that support recovery. Build social supports and communicate with loved ones about symptoms Provide structure to your day. Seek crisis intervention, treatment, or hospitalization (if necessary). Take medications as directed and make modifications when necessary (after consulting with a psychiatrist or nurse practitioner). Improve nutrition, exercise, and sleep. Look to trusted loved ones for feedback if feeling uneasy, anxious, or agitated. Work with your loved ones to develop a plan for watching out for warning signs of relapse. Discuss in advance how you would like your loved one to bring their concerns to your attention. Have realistic expectations for yourself and your loved ones and communicate when you have concerns.

Steps that loved ones can take to help prevent relapse include, but are not limited to: • Be informed about the diagnosis and your loved one’s unique experience. • Know who to call should you have any questions or concerns. • Engage in effective communication with your loved one to decrease stress and tension. • Provide appropriate support when a loved one is feeling stressed, working toward goals, or involved in treatment. • Be realistic with your expectations. • Avoid attributing every emotion or behavior to the mental illness. Make note of the change or concern but avoid becoming preoccupied about it. Remember that the human experience is not lost when someone receives a diagnosis. 83

DECREASING THE CHANCE FOR SYMPTOM RELAPSE1-4 Being prepared with a plan should a relapse occur can help lessen the impact of the relapse. Having a plan can also make everyone feel more prepared and less anxious. However, because symptoms and circumstances change over time, it is important to check in periodically to ensure the plan and strategies still fit for you and your preferences. On the following pages, we will discuss strategies to prevent relapse that are specific for you and your loved ones. Name four things you can do to help prevent relapse as an individual. 1. 2. 3. 4.

Name four things you can do to help prevent relapse as a group. 1. 2. 3. 4.

Consider the environmental stressors you identified earlier. List two things you can modify in your home (or in your loved one’s environment) to make it feel less stressful and less overstimulating. 1. 2.

List two things you can consider modifying should you notice any early warning signs that there is a high level of stress or if symptoms seem to be returning or intensifying. 1. 2.

What can you do if you think a relapse is coming on? What can you do should a relapse occur? ______________________________________________________________________________ ______________________________________________________________________________

It is very helpful to write out a formal “Relapse Prevention Plan” – so everyone knows what to do when signs or symptoms start or get worse. Your LINC clinician can help with this. 84

MONITORING SYMPTOMS AND CHECKING IN1-4 Monitoring and checking in on symptoms is another helpful strategy to prevent a symptom relapse from occurring. If you know what to look for, you can intervene early and decrease the likelihood that a relapse will occur. It is important to observe both the frequency with which symptoms occur as well as how distressing these symptoms are or become. Let’s take a look at the activity on the next page. It will help you and your loved ones check in on symptoms and stress levels. 1. 2. 3. 4.

Start by making a list of symptoms. Include those that are very bothersome and those that are less bothersome, as well as those that are commonly experienced and those that happen less frequently. Next, mark in the box each day how many times that symptom occurred, or simply that a particular symptom occurred on that day. Put a checkmark or circle the times the symptom was distressing. Be aware if there is an increase in symptoms overall or an increase of a specific symptom. You can do this in two ways: • Total the number of symptoms experienced in one day (by adding up the number of symptoms and placing this number in the row across the bottom of the table, “Total symptoms per day”). • Total the number of times during the week that a specific symptom occurred (by adding up the number and placing this number in the column on the right side of the table, “Total of each symptom per week”). Take action as soon as possible if you think a relapse is coming on. Inform someone from your treatment team as soon as possible what symptoms have increased. A sign that a relapse may occur is when frequency of symptoms overall has increased (i.e., the total number across the bottom of the table), or when a specific symptom has become more frequent (i.e., the total number down the right side of the table).1-3

When more than one person is observing how an individual is doing each day, we are able to get a more accurate picture of what is going on. It is important that these observations remain objective and describe what was seen or experienced directly. It can be uncomfortable to think of loved ones observing and checking in on symptoms. This is why it is important to discuss as a group what each person feels comfortable observing or having observed.

SYMPTOM CHECKLIST2-4

SYMPTOM

Mon.

Tues.

Wed. Thurs.

Total per day (Add columns going down)

Fri.

Sat.

Sun.

Total per week (Add rows going across)

Relapse Prevention

In this section, you have learned: • Symptom relapse is a return or worsening of symptoms and is unique to each individual. • Symptom relapse can impact both the individual living with the mental illness as well as those around them. However, it does not mean there has been a failure on anyone’s part. Nor does it mean that the individual is unable to recover. • Environmental stressors or cues are those things in a person’s environment or life that can lead to increased stress or overstimulation. This, in turn, can sometimes lead to a return or worsening of symptoms if not promptly addressed. Stress is often one contributing factor, but there are many things that contribute to symptom relapse. • It is important that a person is able to identify the signs that tell them when they are starting to feel overwhelmed, overly stressed, or a return or worsening of symptoms (relapse) is about to occur. They are different for every person.

• Early warning signs can be behavioral/observable to others or can be internal changes that only the individual can feel. Being proactive and preventing relapse is preferred, rather than taking a reactive approach once symptoms have returned or worsened. Intervening early and effectively decreases the likelihood that a full symptom relapse will occur or become severe. Loved ones are very important in identifying early warning signs. • There are many proactive steps that both individuals and loved ones can do to prevent or reduce the impact of a relapse. It is important to discuss a Relapse Prevention Plan with your LINC clinician and treatment team.

Relapse Prevention

Sources: 1Glynn,

S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf. 2Bisbee,

C. (1991). Educating patients and families about mental illness: A practical guide. Gaithersburg, MD: Aspen Publishers. 3Bisbee,

C. (1995). Partnership for Recovery.

4Family

Institute for Education, Practice, and Research. (2011). Consumer Centered Family Consultation. Unpublished manual. University of Rochester Medical Center, New York.

Preparing for an Emergency and Advance Directives Included in this section: • Preparing for an Emergency • Mental Health Information Sheet • Advance Directives for Mental Health

In this section, you will learn about: • The importance of being prepared should an emergency occur • The role of Advance Directives for Mental Health Treatment in a proactive approach to care

Preparing for an Emergency and Advance Directives

PREPARING FOR AN EMERGENCY To maintain wellness and minimize stress it is important to be aware of what leads to a person’s increase in symptoms and what their early warning signs of distress are. There are times when people just need a day or two of reduced stress to feel back to their old selves. There are other times when getting outside help earlier (rather than later) can alleviate stress for everyone involved, as well as reduce the likelihood of hospitalization. Should an urgent situation arise, it is important to have a plan in place to respond to relapse and determine if hospitalization or another crisis intervention is needed. There are several general guidelines to consider if additional assistance is needed. Your LINC clinician can assist with identifying specific names, numbers, and protocols or procedures you can access in these more urgent times. 1. Write out the contact information for the primary agency provider, as well as a secondary contact person, on the lines below so you are able to call easily if assistance is needed. ______________________________________________________________________ ______________________________________________________________________ Write out the specific information below should you need urgent assistance, such as agency hours, where to go and who to call in an emergency, emergency phone numbers, etc. ______________________________________________________________________ 93

Call for guidance as soon as you notice the early warning signs, rather than waiting for the situation to escalate. Calling earlier in the day increases the likelihood that someone from the agency will have availability for an appointment that day. At the very least, the provider agency is now aware of the circumstance and can provide guidance. Ensure you have information on the emergency procedures for the agency in advance. Is there a crisis team that can be dispatched if there is a need for an emergency evaluation – but the circumstance does not warrant a call to 911 and the individual is not able to be seen at the agency (e.g., for calls at night or on the weekend)? 2. Discuss what qualifies as an emergency. It is important to have a good idea of what is an emergent situation versus when a situation can be monitored. If it is an emergency, it is helpful to know when to call 911 versus when to call the agency’s emergency clinic (if one is available). 3. If you need to call 911, request that a “Crisis Intervention Team (CIT) trained officer” be dispatched. If the dispatcher is unsure what “CIT” is, ask them to request an officer who has specialized training for mental health emergencies. (All 88 Ohio counties have CIT trained officers.) Certain information will be very helpful when making this call: • current threat (e.g., individual is in danger of hurting self, others, or property) • access to a weapon • history of violence or aggression • diagnosis and current medications • current symptoms • what has helped to calm situations in the past • history of self-harm/suicide attempts • history of hospitalizations • substance use • what contributes to worsening of symptoms1,2 In order to be fully informed so that you can provide pertinent information to others, it is key that you maintain an up-to-date Mental Health Information Sheet. This is true for everyone, not just individuals living with a mental illness. It is useful to have updated medication information that you can share with trusted others should an urgent health situation occur. Consider completing this sheet for each person participating in LINC (modifying as appropriate). 4. Always err on the side of caution. If there is any issue of safety (of self, the individual, or others), the situation must be addressed immediately. After a high-stress situation, it is important that the individual with a mental illness and their loved ones have someone they can go to for support. Consider contacting your LINC clinician, another agency provider, or your local National Alliance on Mental Illness (NAMI) chapter. NAMI can provide you with additional support following a time of high stress or when living with – or loving someone with – a mental illness. 94

MENTAL HEALTH INFORMATION SHEET Name:

Date: _____________________

Mental health diagnosis:

_______________________________

Current medications and dosages (include psychiatric and other medications): ________________________________________________________________________________ ________________________________________________________________________________ Previous medications (include psychiatric and other medications) and response to each psychiatric medication: ________________________________________________________________________________ ________________________________________________________________________________ Preferred hospital: ________________________________________________________________________________ ________________________________________________________________________________ Allergies and reactions to medications: ________________________________________________________________________________ ________________________________________________________________________________ I have an Advance Directive for Mental Health. _____ Yes _____ No If yes, list the name and phone number of the person who is identified as the proxy for the Advance Directive: _________________________________________________________________________________

CONTACTS AND ROLES LOVED ONE

Name: _______________________________

Role: Agreed to let me know when symptoms increase; call when I want to check my thoughts

Phone:_______________________________ Best time to call:_______________________

PSYCHIATRIST OR NURSE PRACTITIONER Role: To clarify medication questions

Name:_______________________________ Phone:_______________________________ Best time to call:_______________________

OUTPATIENT PROVIDER

Name:_______________________________

Role: Call to notify of symptom or situation changes and to review coping strategies

Phone:_______________________________ Best time to call:_______________________

CRISIS LINE:

Name:_______________________________

Role: Call in urgent situations Phone:_______________________________

ADVANCE DIRECTIVES FOR MENTAL HEALTH3 What you should know about Advance Directives for Mental Health: An Advance Directive for Mental Health (also known as a Psychiatric Advance Directive or State of Ohio Declaration for Mental Health Treatment) is a legal document. It empowers an individual to identify a proxy (a trusted loved one) to make mental health care decisions when their physician or psychiatrist and one other mental health professional determine that they are unable to make informed and safe decisions in the moment. It is not permanent. Many people with a history of a mental illness live in fear of what will happen if they lose the ability to make decisions. When an individual develops an Advance Directive for Mental Health, they may leave instructions and name a proxy to act on their behalf. It is a proactive approach that allows the individual to make their own decisions about mental health care should a time of crisis arise. Have an Advance Directive for Mental Health Care can help protect an individual’s autonomy and choices for care. An Advance Directive for Mental Health may address issues such as: • • • • •

Preference about types of treatment Choice of medications that they may or may not want to take Choice of where treatment is provided Choice about whom the individual wishes to see or not see Choices about the temporary care of children, notification to an employer about hospitalization, paying bills while in the hospital, etc.

Developing an Advance Directive for Mental Health allows the individual an opportunity to discuss early warning signs, environmental stressors, symptoms, and treatment preferences with a trusted loved one. When properly planned and implemented, it is a natural fit with empowerment and recovery.3 How is an Advance Directive for Mental Health created? An Advance Directive for Mental Health is much like a living will for health care. Advance Directives are stated in legal documents. Two kinds of legal documents can be used to state an Advance Directive: • •

The Durable Power of Attorney for Health Care The State of Ohio Declaration for Mental Health Treatment

If an individual has both documents, the State of Ohio Declaration for Mental Health Treatment will always be the controlling document for mental health treatment.

The difference between these documents is that the individual can change or delete instructions in the Durable Power of Attorney for Health Care. Once the State of Ohio Declaration for Mental Health Treatment has been invoked, it cannot be immediately changed or revoked. If the individual becomes unable to make their own decisions due to severe symptoms of a mental illness, they cannot change the instructions for treatment (that were given when the Declaration for Mental Health Treatment was created) during the episode. However, the individual may change the Declaration for Mental Health Treatment after they have regained decision-making capacity, as determined by a psychiatrist or a court. The State of Ohio Declaration for Mental Health Treatment can be revoked – in writing – at any time, as long as it is not active/in effect at that particular time. To revoke authority of the proxy, all providers must be given documentation in writing that states authority of the proxy has been revoked. If the individual is admitted to a hospital, it is vital that the proxy provides the most recent copy of the Advanced Directive for Mental Health to hospital staff and it is then placed in the individual’s health record. The State of Ohio Declaration for Mental Health Treatment is a legal document only if witnessed by two people or notarized. Who can an individual appoint to make mental health decisions on their behalf? The individual should only choose someone they know well and can trust to be the proxy because they must feel comfortable discussing aspects of their mental health care with this person. The proxy must be willing to listen to the individual’s health care wishes and follow these wishes to the best of their ability, even if the proxy disagrees. When the Advance Directive for Mental Health is in effect, as long as it is safe, the proxy will have access to the individual’s medical information and treatment options. The proxy will discuss the individual’s relevant mental health information with treatment providers and will make mental health treatment decisions for the individual during the time the Advance Directive for Mental Health is in effect, as well as any other medical decisions (if so declared in a Durable Power of Attorney for Health Care). Allowing others access to medical information is often the most uncomfortable or anxietyprovoking part of choosing to prepare an Advance Directive for Mental Health. However, it is important to keep in mind that the Advance Directive for Mental Health is only in effect/active should symptoms be so severe that mental health treatment providers believe an individual is currently unable to act in their own best interest. For many individuals, it is preferred to have a plan in place and wishes known in advance in case a time comes when symptoms become so severe that they interfere with making the safest decisions. The Advance Directive for Mental Health – and therefore access to medical information – is revoked at the time when mental health treatment providers declare that an individual is again able to make the safest and healthiest decisions. The goal is not to keep an Advance Directive for Mental Health in effect/active for any longer than is absolutely necessary.

Who should have a copy of the Advance Directive for Mental Health? It is essential that all current healthcare providers are given a copy of the most up-to-date Advanced Directive for Mental Health. It is also critical that this Advance Directive for Mental Health is revisited periodically to ensure it is valid (with a non-expired date), updated with the most current information, and that proxy/preferences remain the same. It is suggested that the Advance Directive for Mental Health is revisited, its contents discussed, and everyone updated at least once each year. The individual must always remember to keep a copy of the Advance Directive for Mental Health in a safe place. Other copies should be provided to: • • • • • • •

The proxy The treatment team at the community mental health agency Local hospitals where there have been previous hospitalizations Other healthcare providers (outside of mental health), such as a primary care physician Law enforcement (optional, but can be helpful if there is a concern about any interaction with the law) Group home, nursing home, or other residential or housing entity Other trusted loved ones

To get a better idea of what the document looks like, a truncated sample of the State of Ohio Declaration for Mental Health Treatment is provided on the following pages.4 Your LINC clinician can provide you with a State of Ohio Declaration for Mental Health Treatment form upon request. Your LINC clinician may provide you with some guidance on how to complete this Advance Directive for Mental Health4, or you can contact Disability Rights Ohio for additional assistance.3 This information is provided by Disability Rights Ohio and is not a substitute for professional legal advice.

State of Ohio Declaration for Mental Health Treatment I, , being an adult person, voluntarily execute this declaration for mental health treatment. I understand and accept the consequences of this action. I name as my DESIGNATED PHYSICIAN and assign this physician the primary responsibility for my mental health treatment. This declaration only becomes operative when both of the following apply: 1) This declaration is communicated to my mental health treatment provider. 2) a) My designated physician or a psychiatrist and b) one other mental health treatment provider who have examined me determine that I do not have the capacity to consent to mental health treatment decisions. At least one of the two persons who make this determination shall not be involved in my treatment at the time of the determination. In the event that this declaration becomes operative, the following constitutes my intentions for treatment. Psychotropic Medications If I lack capacity to consent to mental health treatment decisions, my wishes regarding psychotropic medications are as follows: I consent to the administration of the following medications: _______________________________________________________________________________ I do not consent to the administration of the following medications: ________________________________________________________________________________ Conditions or limitations: _______________________________________________________________________________ _______________________________________________________________________________ Admission To And Retention In A Facility If I lack capacity to consent to mental health treatment decisions, my wishes regarding admission to and retention in a facility are as follows: NOTE: Admission to and retention in a facility may be mandated for other than voluntary admissions.

100

for up to

I consent to being admitted to a health care facility for mental health treatment for as long as my physician or psychiatrist deem appropriate. I consent to being admitted to a health care facility for mental health treatment days. I do not consent to being admitted to a health care facility for mental health

treatment. Conditions or limitations: _______________________________________________________________________________ _______________________________________________________________________________ Treatment Preferences or Instructions I understand that the following preferences and instructions are provided to guide mental health treatment providers and/or my proxy in determining, within reason, a course of treatment most beneficial to me. [ ] I have a Wellness Recovery Action Plan (WRAP) or other crisis intervention plan that is: [ ] attached to this document [ ] in the following location:

[ ] I do not have a Wellness Recovery Action Plan or other written crisis intervention plan. I consent to be treated by the following physician(s) and/or mental health therapist(s): Name__________________________________________________________________________ Telephone Number (if known)______________________________________________________ I prefer not to be treated by the following physician(s) and/or mental health therapist(s): Name________________________________________________________________________ Telephone Number (if known) ____________________________________________________ If I am hospitalized, I consent to be hospitalized at the following institution(s): _____________________________________________________________________________ If I am hospitalized, I prefer not to be hospitalized at the following institution(s): _______________________________________________________________________________ This form can be found in its entirety at:4 https://www.nrc-pad.org/images/stories/PDFs/ohiopadform.pdf

101

Preparing for an Emergency and Advance Directives In this section, you have learned: • Preparing for an emergency can help everyone involved feel better able to respond in an urgent situation, leading to decreased anxiety and feeling empowered to respond effectively. • An Advance Directive for Mental Health is a legal document that empowers an individual to be proactive in their care. The individual is able to identify a trusted loved one who could step in and make mental health care decisions on behalf of the individual, acting in the individual’s best interest and according to their wishes whenever possible, during a time when it has been determined that the individual is unable to make safe or informed decisions about their care. It is not intended to be permanent.

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Preparing for an Emergency and Advance Directives

Sources: 1National

Alliance on Mental Illness. Navigating a Mental Health Crisis. 2018. Available at: https://www.nami.org/About-NAMI/Publications-Reports/Guides/Navigating-a-Mental-HealthCrisis/Navigating-A-Mental-Health-Crisis.pdf. Accessed August 20, 2020. 2National

Alliance on Mental Health. Calling 911 and Talking with Police. 2019. Available at: https://www.nami.org/find-support/family-members-and-caregivers/calling-911-and-talking-withpolice. Accessed August 20, 2020. 3Information

on Advance Directives for Mental Health Treatment in Ohio available from Disability Rights Ohio at https://www.disabilityrightsohio.org/advance-directives-for-mental-healthtreatment-ohio. 4State

of Ohio Declaration for Mental Health Treatment is available at: https://www.nrcpad.org/images/stories/PDFs/ohiopadform.pdf.

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Use of Substances and the Impact on Mental Health Use of Substances and the Impact on Mental Health This section may not apply to everyone, but it is important enough to merit a brief review in the LINC manual. Included in this section: • Substance Use and Misuse • Common Reasons for Use • Issues Related to Substance Use and Misuse

In this section, you will learn about: • Co-occurring disorders • Reasons why individuals use alcohol and drugs • Impact and consequences of substance use and misuse, especially for individuals living with a mental illness

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Use of Substances and the Impact on Mental Health USE OF SUBSTANCES AND THE IMPACT ON MENTAL HEALTH SUBSTANCE USE AND MISUSE Mental illness and the use of substances often occur together, and substance use is one factor that often leads to relapse of a mental illness. Having both a mental illness and a substance use disorder at the same time is called co-occurring or comorbidity and can make the treatment of each disorder even more difficult. There are many different types of substances that individuals use to change their mood or their thoughts. Using substances such as alcohol, tobacco, marijuana, and cocaine is common, and these and other substances can have a variety of effects on an individual. The effects of these substances are even stronger for someone living with a mental illness. Even small amounts can be problematic for someone with a mental illness who is sensitive to their effects. The prevalence for any substance use disorder in individuals diagnosed with schizophrenia is approximately 42%. The prevalence of illicit drug use for individuals with schizophrenia is 28%, of cannabis is 26%, and of alcohol abuse is 24%.1 Individuals diagnosed with a bipolar disorder have high rates of co-occurring substance use disorders, and the lifetime prevalence of having a substance use disorder is 40% for those living with bipolar I disorder.2 Alcohol and cannabis are the substances most commonly misused in individuals with bipolar disorder.2 Some substances, such as cannabis, can cause symptoms, including psychosis. Cannabis has the ability to boost dopamine levels by stimulating the brain to release this neurotransmitter.3 As you will recall from earlier in this guidebook, dopamine levels go into overdrive during psychosis. Cannabis also affects another neurotransmitter known as glutamate.4 In fact, 15-20% of adults who have used cannabis report having experienced psychosis from it.5,6 In addition, tobacco use is exceptionally high for people with mental illness – ranging from 34.3% (people with phobias or fears) up to 88% (people with schizophrenia). This is compared to 107

18.3% among people with no such illnesses.7,8 It is estimated that 44% of all cigarettes consumed in the United States are by individuals with a psychiatric condition.9 In addition, people with mental illness are more likely to smoke more heavily and have more barriers to access to help with quitting tobacco than those in the general population. 10,11 It is also important to note that smoking may interfere with the metabolism of many medications (including those prescribed for mental health conditions) – leading to the need for potentially higher doses to adequately help with symptoms of the mental illness.12,13

COMMON REASONS FOR USE OF ALCOHOL AND DRUGS14,15 There are many reasons why individuals use alcohol and drugs, some of which include: •

To socialize and have a good time. It allows an individual to feel like “one of the crowd,” to feel more comfortable around people, or because it is a common social activity in our society.

•

To cope with symptoms and improve mood. Using substances may provide temporary relief from hearing voices or may make an individual feel less concerned that others are looking at him or her. Substances can make an individual feel less worried or down while they are feeling the effects of the substance. However, using substances ultimately makes symptoms worse and causes more problems in the long-run, and individuals may feel poorly about themselves or their choices after they use.

•

To get to sleep more easily. However, this sleep is less restful and the individual feels groggy in the morning.

•

To avoid other problems. Using substances might help the individual in the moment by distracting them or providing a temporary escape.

•

To keep to a routine. Using substances can become part of a daily routine, and routines make people comfortable. Using substances as part of a daily routine often gives an individual something to which they can look forward.

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ISSUES RELATED TO SUBSTANCE USE AND MISUSE15 Although there are seemingly positive effects of using substances, alcohol and drug use also has negative consequences. Substance use can lead to a number of problems, especially for individuals living with a mental illness. Alcohol and drug use can directly lead to symptom relapse. It can affect biological factors in the brain, interfere with the protective effects and effectiveness of medication, and lead to more stress through negative consequences of using substances. Some problems from using substances that an individual might encounter include: •

Interference with work or school

•

Interference achieving goals

•

Difficulties in relationships

•

Being taken advantage of by other people

•

Not taking proper care of themselves

•

Legal problems

•

Putting themselves into unsafe situations or acting impulsively

•

Physical health problems from both short-term and long-term use

•

Developing physical and psychological dependence

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DISCUSSION QUESTIONS – SUBSTANCE USE AND MISUSE

If substances have caused problems for you or your loved one, what are some strategies you can do to help the situation?

Some strategies might include:15 • • •

setting a good example by not using in excess reinforcing positive behavior change using effective communication strategies to convey your concern and desire to help

Other potential strategies: _______________________________________________________________________________ _______________________________________________________________________________ _______________________________________________________________________________

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Use of Substances and the Impact on Mental Health

In this section, you have learned: • Mental illness and the use of substances often occur together, and substance use is one factor that often leads to relapse of a mental illness. Having both a mental illness and a substance use disorder at the same time is called co-occurring or comorbidity. • There are many reasons why individuals use alcohol and drugs. • Substance use and misuse can have a negative impact on an individual, especially for someone living with a mental illness. Alcohol and drug use can directly lead to symptom relapse, can affect biological factors in the brain, interfere with the protective effects and effectiveness of medication, and lead to more stress through negative consequences of using substances.

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Use of Substances and the Impact on Mental Health

Sources: 1

Hunt, G.E., Large, M.M., Clearly, M., Ziong Lai, H.M, & Saunders, J.B. (2018). Prevalence of comorbid substance use in schizophrenia spectrum disorders in community settings, 1990-2017: Systematic review and meta-analysis. Drug and Alcohol Dependence, 191, 234-258. doi: 10.1016/j.drugalcdep.2018.07.011 2Cerullo, M.A. & Strakowski, S.M. (2007). The prevalence and significance of substance use disorders in bipolar type I and II disorder. Substance Abuse Treatment, Prevention, and Policy, 2(29). doi: 10.1186/1747-597X-2-29 3 Voruganti, L.N., Slomka, P., Zabel, P., Matter, A., & Awad, A.G. (2001). Cannabis induced dopamine release: an in-vivo SPEC Study. Psychiatry Research 107(3),173-7. doi: 10.1016/s09254927(01)00104-4 4

Colizzi M., Weltens N., McGuire P., et al. (2019). Delta-9-tetrahydrocannabinol increases striatal glutamate levels in healthy individuals: Implications for psychosis. Molecular Psychiatry. doi: 10.1038/s41380-019-0374-8 5 Thomas H. (1996). A community survey of adverse effects of cannabis use. Drug and Alcohol Dependence, 42(3), 201-207. doi: 10.1016/s0376-8716(96)01277 6 Green B., Kavanagh, D., & Young, R. (2003). Being stoned: A review of self-reported cannabis effects. Drug and Alcohol Review, 22(4), 453-460. doi: 10.1080/095952303100001613976 7McClave, A. K., McKnight-Eily, L. R., Davis, S. P., & Dube, S. R. (2010). Smoking characteristics of adults with selected lifetime mental illnesses: results from the 2007 National Health Interview Survey. American journal of public health, 100(12), 2464–2472. https://doi.org/10.2105/AJPH.2009.188136 8Hall, S. M., & Prochaska, J. J. (2009). Treatment of smokers with co-occurring disorders: emphasis on integration in mental health and addiction treatment settings. Annual review of clinical psychology, 5, 409–431. https://doi.org/10.1146/annurev.clinpsy.032408.153614 112

Sources, continued: 9Lasser,

K., Boyd, J. W., Woolhandler, S., Himmelstein, D. U., McCormick, D., & Bor, D. H. (2000). Smoking and mental illness: A population-based prevalence study. JAMA, 284(20), 2606–2610. https://doi.org/10.1001/jama.284.20.2606 10Schroeder, S. A., & Morris, C. D. (2010). Confronting a neglected epidemic: tobacco cessation for persons with mental illnesses and substance abuse problems. Annual review of public health, 31, 297–314. https://doi.org/10.1146/annurev.publhealth.012809.103701 11Williams, J. M., Zimmermann, M. H., Steinberg, M. L., Gandhi, K. K., Delnevo, C., Steinberg, M. B., & Foulds, J. (2011). A comprehensive model for mental health tobacco recovery in new jersey. Administration and policy in mental health, 38(5), 368–383. https://doi.org/10.1007/s10488-0100324-x 12Zevin, S., & Benowitz, N. L. (1999). Drug interactions with tobacco smoking. An update. Clinical pharmacokinetics, 36(6), 425–438. https://doi.org/10.2165/00003088-199936060-00004 13Desai, H. D., Seabolt, J., & Jann, M. W. (2001). Smoking in patients receiving psychotropic medications: a pharmacokinetic perspective. CNS drugs, 15(6), 469–494. https://doi.org/10.2165/00023210-200115060-00005 14

Adapted from Mueser, T. & Glynn, S. Behavioral Family Therapy for Psychiatric Disorders, Second Edition. New Harbinger Publications, Inc. Oakland, CA. 15

Glynn, S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf.

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Personal Values, Strengths, and Goals

Included in this section: • • • •

Personal Values and What Matters Most Personal Strengths Strengths of Your Support System Setting Goals

In this section, you will learn about: • Identifying personal strengths, values, and goals • Creating a plan to achieve attainable small/short-term and large/long-term goals • Identifying ways loved ones can support one another in their goals and values • Creating a plan to work towards a shared goal with loved ones

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PERSONAL GOALS, STRENGTHS, VALUES Personal Values, Strengths,AND and Goals

Part of the treatment and recovery journey involves identifying and understanding your purpose and worth. Setting goals is one way to reach your potential and often provides a way to share your talents and contributions with others. However, it can be a difficult task to set goals if you have not first considered what you value. By knowing what matters most to you, you will be better able to set goals and be motivated to achieve them. It will also help your loved ones to better understand where you are coming from and may offer them a new perspective or insight into why you make the choices you do.

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PERSONAL VALUES AND WHAT MATTERS MOST Let’s take a look at some questions to help you think through what is most important to you. Think about the various areas of your life (relationships, work or school, finances, enjoyable activities and hobbies, current living situation, spiritual life, health, etc.). How satisfied are you with these various areas of your life?

Which of these areas matters most to you, and what makes them so important or significant to you?

Are there things you wish were better or different?

As a group: What values do you have in common with your loved ones? What are some differences in values? How does this impact the group?

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PERSONAL STRENGTHS After considering what matters to you the most, it is helpful to identify specific goals and then decide on a plan to help you achieve those goals. But first, by understanding your personal strengths, you will be better able to achieve the goals you identify. Not only will you have an idea of what you are able to do to achieve this goal, but you will also have an idea of what areas you might need some extra help from others. To identify personal strengths, take a few minutes to identify strengths in yourself and in each other. Below is a list of some examples you might use to describe yourself or others. Feel free to come up with your own examples. Then discuss how you see yourself and how others see you as a group – you may be surprised at the positive way others view you and your strengths!

Adventurous Brave Cautious Considerate Curious Enthusiastic Friendly Genuine Hopeful Intelligent Knowledgeable Loving Motivated Orderly Patient Persuasive Practical Religious Self-Sufficient Spiritual Understanding

Ambitious Calm Cheerful Cooperative Dependable Fair Fun-Loving Hardworking Humble Intuitive Leader Loyal Observant Organized Perceptive Polite Protective Resourceful Sincere Spontaneous Unique

Appreciative Capable Compassionate Creative Empathetic Forgiving Funny Helpful Independent Just Lovable Mature Open-Minded Original Persistent Planful Punctual Respectful Skillful Team Player Wise

Additional strengths (not listed): _____________________ _____________________

_____________________

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Authentic Caring Confident Critical Thinker Energetic Free-Spirited Generous Honest Insightful Kind Love To Learn Modest Optimistic Passionate Personable Playful Reliable Responsible Social Thoughtful Witty

_____________________ _____________________

DISCUSSION QUESTIONS – PERSONAL STRENGTHS

What are some of your personal strengths?

______________________________________________________________________________

________________________________________________________________________ ________________________________________________________________________

What are some of the strengths of your loved one(s)? Identify strengths of each person.

______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________

Were you surprised by any of your loved ones’ views of your personal strengths?

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DISCUSSION QUESTIONS – PERSONAL STRENGTHS

What are some of the strengths you share as individuals?

What are some of the areas you would like to grow or build upon as an individual?

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STRENGTHS OF YOUR SUPPORT SYSTEM Now that you have completed this activity about the strengths you see in yourself and how others see you, let’s discuss how you view yourselves as a group. What strengths do you possess as a group?

What are some of the areas you would like to grow or build upon as a group?

How can you look to each other for support and assistance when others have strengths that are different from your own?

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SETTING GOALS You have now identified areas in your life that matter most to you and strengths that you possess as an individual and as a group. Let’s move on to discussing goals and review several steps to help you succeed in reaching your goals. It is important to have long-term goals, as well as smaller goals to help you take steps towards achieving them. Below are steps involved in developing a plan to help you reach your goals. This process will help you organize information, determine what is needed to achieve the goal, and work towards your identified goals.

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DEVELOPING A PLAN TO REACH YOUR GOALS1 Step One: What is the goal? Identify a clear, specific personal goal. This goal should be relatively big and should be a long-term goal to work towards achieving. What areas of your life did you identify earlier that you would like to change or improve? Rather than setting a goal to quit or stop something, consider setting a goal in which you produce something or do something new. List two long-term goals that you would like to achieve: 1. 2. Step Two: List short-term goals. What smaller steps can you take towards reaching the long-term goal above? What specific area of the long-term goal can you work on first? List two short-term goals that will help you achieve each of the longer-term goals from above: Goal #1: 1. 2. Goal #2: 1. 2. Step Three: Plan how to achieve the short-term goals. What resources or support from others do you need to be able to achieve these smaller goals? How can you use your strengths to achieve the short-term goals? What are practical steps that must be taken, and in what order, to achieve each goal? Be specific with what is needed for each step/activity and consider any roadblocks or issues that might arise. Discuss as a group the resources needed and potential roadblocks. Who from this group can help to support your efforts in reaching these goals, and how might they assist or support your efforts? Who can assist and with what aspect(s) of the plan: What is needed to achieve the short-term goal (e.g., money, transportation, skills, additional information): _______________________________________________________________________________

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When does this short-term goal need to be met in order to move on to the next step (e.g., next short-term goal or the long-term goal): What obstacles might get in the way of carrying out the plan, and what can you do to avoid or work around them should they arise: _____________________________________________ Other information needed to carry out the plan: Step Four: Revisit goals often. It is important to revisit both your short-term and long-term goals often to ensure you are on track and the goals are still relevant. Circumstances and situations change, and with those changes come necessary revisions of goals, steps in achieving them, and support or resources needed.

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DEVELOPING A PLAN TO REACH YOUR SHARED GOALS As a group, repeat this goal-setting activity, identifying a shared goal and a plan for achieving this goal. What are some of the goals you share as a group?

What would you like to do more of as a group, and how might you achieve that goal?

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LET’S SUMMARIZE: PERSONAL VALUES, STRENGTHS, AND GOALS You have identified the following as what matters most to you, what you value:

You have also identified the following personal strengths:

Finally, you have identified your goals as the following, with a plan in place to help you achieve that goal by using your personal strengths and the support of others.

SELF-CHECK • • • •

The goals you have defined above are consistent with your values. The goals are achievable and reasonable. You are motivated to work towards these goals because they are important to you, as an individual. You have identified the ways those around you can support your efforts and help you work towards these goals.

Keep in mind that goals change over time as we change over time. It is important to revisit these goals often to see if they still apply to your current situation and circumstance, or if they might require some modifications. It is also important to check in on goals to see progress made and areas for continued work and growth.

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Personal Values, Strengths, and Goals In this section, you have learned: • Part of treatment and recovery involves identifying and understanding an individual’s purpose and worth. Identifying personal strengths helps an individual to achieve their goals. Setting goals is one way to reach your potential and share your talents and contributions with others. By first knowing what matters most to you (what you value), you will be better able to set goals and be motivated to achieve them. • It is important to discuss steps toward – and create a plan for – achieving goals: goals that are large and small, and goals that can be achieved in the short-term and the long-term. Identifying how loved ones can assist you in reaching your goals is an important step, as is identifying goals that you share with loved ones that you can work towards together. • Goals that you set should be consistent/congruent with your values. Goals should be achievable and reasonable. • Goals change over time, so it is important to revisit and modify goals often.

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Personal Values, Strengths, and Goals

Sources: 1Glynn,

S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf.

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Communication Communication Included in this section: • • • • • • • • •

Communication Styles Why Effective Communication is So Important Communication and the Human Experience Skills for Effective Communication Communication Pitfalls Additional Skills for Successful Communication Communicating During Difficult Times Helpful Tips for Loved Ones Communicating with the Team

In this section, you will learn about: • • • • •

Verbal and nonverbal communication How mental illness impacts communication Effective versus ineffective communication How loved ones can support treatment and recovery Communicating effectively with treatment providers

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Communication COMMUNICATION STYLES Communication is how we send and receive messages and how we exchange knowledge and information. Communication is powerful, and we are constantly communicating with others every day. The information exchanged may be letting someone know what we are thinking, what we believe, how we are feeling, what we want or need, etc. Communication can take many forms. The most obvious is verbal communication: this is using language to share a message and includes spoken or sign language. We also communicate through visual or written means. Nonverbal communication is a type of communication that we sometimes do not realize we are using. We convey lots of information to others through our nonverbal forms of communication, especially how we are feeling about a certain situation. Our facial expressions, body language, eye contact, tone of voice, and hand gestures are ways in which we communicate with others nonverbally (without using words). There are times when what we say verbally, and the message we send with our nonverbal language, do not match. This can be very confusing to the recipient because they are unsure which message to listen to: the one we have spoken or the one that our body or face is saying. It is important to reflect on your communication style and check in with others about how they perceive and receive your messages. When symptoms of a mental illness are involved, clear and direct communication becomes even more important, as individuals sometimes are already uncertain as to what to trust or believe. In addition, there are symptoms of mental illness that may lead people to have difficulty perceiving others’ intentions or messages. It is key that loved ones be aware of their nonverbal messages and how what they say verbally might be misinterpreted. It is also important that individuals living with a mental illness are clear about concerns they may be having so that their loved ones are able to clarify and reassure them about their intended message. Effective communication skills are necessary to ensure information is conveyed clearly and understood by the recipient.

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DISCUSSION QUESTIONS - COMMUNICATION STYLES

Are your verbal communications and nonverbal communications typically consistent? Would those around you agree?

If you are confused about someone’s intended message because there is inconsistency between the verbal and nonverbal communication, what could you do? How might you clarify which message (verbal versus nonverbal) to respond to?

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WHY EFFECTIVE COMMUNICATION IS SO IMPORTANT Effective communication is important to everyone’s health and well-being, but it can be especially important for those living with a mental illness and their loved ones. When an individual is experiencing symptoms of a mental illness, this can sometimes impact thought processes. Therefore, it is especially important that family, friends, providers, etc. can be sure what they have communicated has been clearly understood. Ineffective communication can lead to stress and tension, having a negative impact on all involved. For an individual living with a mental illness, ineffective communication can have significant negative consequences. It is important to understand exactly how ineffective communication can lead to negative outcomes. When communication breaks down, this often results in increased amounts of stress and tension for everyone involved. For individuals living with a mental illness, stress can result in increased symptoms, which may lead to a relapse (sometimes requiring hospitalization).

One important step in effective communication is finding the right balance between “walking on eggshells” and overly assertive or aggressive communication. It can be difficult to always know the “right” thing to say and how to say it, but your LINC clinician is an excellent guide and resource as you practice and learn new skills and strategies for effective communication. Remember, no one is perfect when it comes to effective communication. We all can benefit from practicing more effective ways to communicate our wants, needs, and emotions – as well as practicing how to respond appropriately when another person has a communication style that differs from our own. Another factor to keep in mind is that how you communicate with loved ones who have been a part of your life for a number of years has become normal or typical for your group. Communication styles are learned over time in response to how others communicate, our own ability to regulate our emotions, and are based on our observations of how others in our life communicate. Communication is also impacted by cultural and familial upbringing, including belief systems. Because communication styles and strategies are developed over time, this tells us that they are also not something we can change overnight. Making modifications to the way we communicate is a slow process that takes practice, effort, and overcoming missteps. The key is that we learn as we go.

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DISCUSSION QUESTIONS - EFFECTIVE COMMUNICATION

How would you describe the communication style of those in this group?

What seems to work well in the way you communicate with one another?

What is an area that you think you might be able to improve? What is one small change you can make that might impact future conversations and interactions in a positive way?

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COMMUNICATION AND THE HUMAN EXPERIENCE In times of high stress or crisis, including when an individual is experiencing more intense symptoms, communication can begin to break down. However, we must remember that not every breakdown of communication (or every emotion, or every response to a situation) is due to a mental illness. Always keep in mind the human experience. We are living beings full of varying emotions, with sometimes painful histories and potentially living in stressful situations. There are times when communication breaks down and we respond with emotion rather than logic because we are human. No one is defined by a mental illness. Part of an individual’s experience and that of their loved ones is deciding what – if anything – you feel comfortable sharing with others outside of your immediate support system. This is an important conversation to have early on to ensure everyone feels heard and respected regarding their needs, preferences, and wishes. As individuals, we all have different ways of coping with complex experiences. We have different ways that make us feel safe or supported. Because of these differences, some people prefer to share their stories and experience with many people in their lives. We often see this on social media. Others, however, prefer to keep things more private, at least for the time being, until they have had an opportunity to sort through their own feelings and experiences first. It is very important to decide together how much information will be shared with those outside of the immediate family, paying special attention to the preferences of the individual with the mental illness.

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DISCUSSION QUESTIONS What, if anything, would you like others outside this group to know about the recent hospitalization or experience with a mental illness?

What are the preferences of others in this group (or in your support system) about the sharing of experiences? Are they consistent? If your preferences, needs, and wishes are not the same as others in the group, is there some common ground upon which everyone can agree?

If you prefer to share your experiences but others do not, what are some other ways you feel that you can get your needs of support and safety met?

Keep in mind that the decision about with whom to share and how much to share should always be carefully considered and done with the utmost respect to everyone involved, especially the individual living with a mental illness.

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SKILLS FOR EFFECTIVE COMMUNICATION Effective communication is important in all relationships, including relationships with family, friends, coworkers, healthcare providers, etc. Communicating effectively means that an individual has expressed a thought or shared information so that it can be understood by the recipient. The recipient has listened to the information carefully, checks for understanding, and asks for clarification if they are uncertain that they understood the message correctly. Verbal and nonverbal cues are consistent, and both parties (the recipient/listener and the person conveying the message) are respectful and are open to feedback. Several skills are important to communicating effectively. These skills include, but are not limited to: • Maintaining consistent verbal and nonverbal communication • Remaining open-minded and willing to compromise • Paying attention and being present in the moment • Being prepared for difficult conversations by thinking them through in advance o This may involve talking a difficult situation through with another trusted person before talking with the individual with whom you are unhappy, or rehearsing what you would like to say in front of the mirror • Knowing your worth and valuing yourself o This includes knowing your limitations and boundaries and getting comfortable saying “no” to certain requests •

Providing clear, concise, and direct communication

•

Taking a breath before speaking to give you time to collect your thoughts

•

Using “I” statements, meaning you take responsibility for your feelings when delivering a message about how you feel about a person’s behavior and how it has impacted you

•

Being an active listener, which includes things like: o Paying attention to the speaker and remaining present in the moment o Providing nonverbal communication, including letting the speaker know that you are listening (by saying “okay,” nodding your head, looking at them when they speak, etc.) o Providing feedback to the speaker about the content of their message o Avoiding interrupting the speaker o Ensuring you understood the speaker’s message by asking clarifying questions or summarizing what you heard the speaker say

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DISCUSSION QUESTIONS - SKILLS FOR EFFECTIVE COMMUNICATION

Which of these skills do you do well?

Which of these skills do you find more difficult to do consistently?

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MAKING “I” STATEMENTS1 Let’s practice one of these skills together. “I” statements allow us to take responsibility for our feelings when we are letting someone know how their behavior made us feel and how it has impacted us, whether that be good or bad. Using “I” statements not only helps us to “own” our feelings, but it also makes it less likely that the other person will become defensive – because no one can tell us how we are supposed to or are allowed to feel. However, it is important that the other person understands why their behavior made us feel a certain way and how it has impacted us so that it decreases the likelihood that the same situation will occur again in the future. After making an “I” statement, it is helpful to let the person know how they might modify their behavior to improve future interactions. We can also use “I” statements to express gratitude or to make a request. And remember, when making an “I” statement, be clear about exactly what the person did and how you feel about it.

A helpful format when delivering an “I” statement is the following: “I feel _________________ when you ______________________ because __________________________________________________.” Come up with a couple of examples, and then let’s try them out loud:

“I feel _________________ when you ______________________ because __________________________________________________.”

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COMMUNICATION PITFALLS There are also communication pitfalls that can result in roadblocks to communicating effectively. These barriers include things like: • Being overly technical with the words we use • Giving unwanted advice or offering solutions when someone just needs you to listen • Being judgmental • Being inconsistent in verbal and nonverbal communication • Conveying negative nonverbal communication, such as rolling your eyes • Not being present or not listening to the speaker, including looking at your cellphone when someone is speaking to you • Being disingenuous, dismissive, or disinterested Keep in mind that no one is perfect when it comes to effective communication.

Can you think of a time recently when you did not communicate as effectively as you could have because of engaging in one of the pitfalls listed above? _______________________________________________________________________________ _______________________________________________________________________________ _______________________________________________________________________________

What could you have done differently in this situation? How might the change impact the outcome of the exchange or the impact on the other person?

________________________________________________________________________________ ________________________________________________________________________________ ________________________________________________________________________________

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ADDITIONAL SKILLS FOR SUCCESSFUL COMMUNICATION At times, we all experience feelings of insecurity or fear. We can be distracted or lack motivation. The general guidelines below can help to promote healthy interactions for anyone who is having a difficult time, including individuals living with a mental illness and their loved ones.

IF SOMEONE IS:

OTHERS MUST BE WILLING TO:

Having trouble with their thoughts or feelings of trust

Keep things simple and truthful

Feeling fearful

Stay calm

Feeling insecure

Be accepting and understanding

Having trouble concentrating

Be brief; repeat what was said Limit how much you say; do not force discussion Be aware of tension; allow for some time and space

Becoming overstimulated Becoming agitated easily Having difficulty with their judgment or making healthy decisions

Not expect agreement with suggestions or fruitful discussions Get their attention before speaking

Becoming distracted Becoming withdrawn

Start conversations Understand that this can be a symptom of the illness; do not take things personally

Having changing emotions Changing plans often

Keep to one plan

Being less understanding of others

Know that lack of empathy is sometimes a symptom of the illness

Believing thoughts that seem strange or bizarre to you

Not argue – and not agree; focus on the feeling underneath the content, rather than the content itself (e.g., “I see you are feeling anxious right now”)

Experiencing low self-esteem or lacking motivation

Stay positive and be encouraging as often as you can

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COMMUNICATING DURING DIFFICULT TIMES3 When someone is having a difficult experience, it is helpful for everyone to know how to respond in a productive way. The key is for everyone to feel safe and heard. Some guidelines to ensure that everyone remains on the same page should a difficult time arise. •

React calmly. Try to stay calm, and avoid becoming outwardly upset, as this may only make a person’s anxiety or symptoms worse.

•

Listen. Listen to the individual’s concerns without making judgments. Listen for the feeling or emotion underneath the content of what the individual might be saying.

•

Avoid arguing. Do not argue about the person’s experience or try to convince them that what they are experiencing is not really happening. Their belief or experience is very real for them and arguing will only lead to increased anxiety and symptoms – and decreased trust.

•

Avoid agreeing. Agreeing with delusional thought content or hallucinations risks making the situation worse or making you part of the unusual experience.

•

Validate feelings. This is an important way to offer support. It shows the individual that loved ones are trying to understand how the person feels. For example, if a person is feeling upset because of hearing voices, you might say: “I am not hearing that voice, but I know it is really upsetting for you.” This helps to build trust.

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Give a lot of support. Express concern and care. Loved ones can reassure the individual that they understand how upsetting their experience is for them, that the person is safe, and that someone is on their side and wants to help. The individual may need loved ones to repeat this often.

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Check for environmental stressors. Things in the environment may cause distress for an individual, which can lead to the onset or worsening of symptoms. The TV, radio, photos, or mirrors can also cause distress, symptoms, or over-stimulation. In response – or ideally, proactively – these devices can be turned off, covered up, or removed. It is important to try to recognize things in the environment that cause distress for an individual as early as possible in order to minimize exposure to them.

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Recognize that not all hallucinations or delusions are upsetting. It may sound surprising, but not all hallucinations and delusions are upsetting. In some cases, the individual might find comfort in these beliefs or voices/visions. The person might fear that medications will take these experiences away, so the individual chooses not to take medication or engage in treatment. If this is the case, it will be important for the LINC clinician to help everyone understand what it is about the belief/voice/vision that the individual finds comforting. Then, together you can work towards finding a solution that fulfills this need – a solution that is productive so that the belief/voice/vision is no longer needed, important, or powerful.

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Inform a member of the treatment team. Let the treatment team know right away if symptoms become worse. An appointment may be needed. 144

HELPFUL TIPS FOR LOVED ONES3 Loved ones often want to know what they can do to support an individual’s treatment and recovery. There is no simple set of guidelines that applies to everyone. How people may help depends on many factors that vary from person to person or family to family. Below is a list of basic facts and information about mental illness and what loved ones may consider in their efforts to support a person living with a mental illness. •

No-fault problem. Mental illness is no one’s fault. People with great support may still develop a mental illness. It is important not to blame the individual with a mental illness, themselves as loved ones, or each other.

•

No right way for everyone. There is no single right way to help an individual who is living with a mental illness. Paying attention to the individual’s response to support can help. Ask for assistance or support from the treatment team or get ideas from other people who also have a loved one living with a mental illness (e.g., National Alliance on Mental Illness).

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Keep things calm. Individuals often do best when the day-to-day stress level is low. For individuals living with a mental illness – like anyone else – feeling pressured, criticized, and getting into fights is not helpful and may make things worse.

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Respect the individual’s need to deal with stress. We all experience stress differently from one another, and we experience stress differently at various points in our lives (depending on the current situation or life circumstance). Sometimes we all need space and some time away, even from things that others may not consider to be overly stressful. Asking one another what is needed during those times may be helpful.

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Focus on the positive. It is very common for loved ones to focus on what is going wrong. However, it is important to be mindful of what is going right – even if it seems like a small thing – and to share that observation with your loved ones.

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Speak clearly and to the point. Sometimes individuals may find it hard to pay attention or understand what is being said. It is helpful to speak clearly and stick to the point. It may also be helpful to check in to be sure the message was understood.

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Remain hopeful. Research has shown that, with appropriate intervention and support, the expectation should be that individuals living with a mental illness will recover and live meaningful, productive lives. As many as 60-80% of individuals are significantly improved or recovered in international studies.4 However, it is important to understand that setbacks happen, and relapse (to varying degrees) is common. Ongoing support from others, especially during difficult times, is an important part of the recovery process. Sharing your hopes, goals, and expectations for the future with trusted loved ones is important for everyone’s health and well-being.

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Get to know others’ experiences so you can learn from them. Many people find it helpful to meet others who have lived experience with a mental illness, whether they are the individual with the mental illness or someone who cares about them. There are groups in the community (e.g., National Alliance on Mental Illness) that offer an opportunity to share experiences, learn about the mental health system, and get ideas on how to support each other.

•

Be prepared. Knowing what to do in an urgent situation is vital for everyone involved. (See Preparing for an Emergency section.) Plan ahead and be prepared. Creating a relapse prevention plan can decrease everyone’s anxieties by eliminating some of the unknowns. It provides you and your loved ones with a thoughtful plan and offers everyone control in a situation that may have otherwise felt very chaotic. (See Relapse Prevention section.) It is better to have a plan that you never use than for an emergent situation to arise and feel unprepared. Discuss with your loved ones and the treatment team how to be prepared should an emergent situation arise. Know your resources and important numbers. Your LINC clinician can guide you in developing a relapse prevention plan, discuss how to prepare for urgent situations, and provide you with important phone numbers and other useful resources.

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Remember that good physical health supports mental health recovery. Recognize that individuals do best when they also take care of their physical health. Practice healthy habits. Regular exercise, healthy eating habits, and following up with all medical and mental health appointments can make a big difference.

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Recognize that stigma with mental illness is, unfortunately, common. It is common for loved ones to feel alone. Stigma may hold people back from talking about mental illness with their support system, and it may discourage people from attending social or family events. Meeting with others who have also experienced stigma can be valuable.

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Make self-care a priority. Find time to engage in activities you enjoy. Take time to recharge and find space to relax. Being too tired or overly stressed can make it hard to be supportive of others’ needs – and to support your own needs.

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Get to know the treatment team – and recognize that loved ones are an integral part of the team. With permission from the individual, it is important for loved ones to get to know those who provide the mental health services and what those services entail. Loved ones can ask treatment providers for ways they, as support persons, can be helpful with treatment goals.

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COMMUNICATING WITH THE TREATMENT TEAM Outcomes are best for everyone involved when the treatment team, loved ones, and the individual are working together effectively and efficiently. To do this successfully, collaboration and communication are key. As integral members of the treatment team, it is important that each of you feels prepared for appointments with the various treatment providers. Preparing for appointments in advance can help to ensure the appointment goes smoothly, decrease any feelings of nervousness, and maximize the benefits of your time together. Preparing for appointments ahead of time might include things like preparing questions, providing input about goals and treatment plan, updating a medication list and including benefits observed or side effects, and working with another treatment team provider (such as the LINC clinician) to organize the information you would like to share.

HELPFUL TIPS FOR PREPARING TO MEET WITH A TREATMENT TEAM MEMBER Prepare an agenda.5 This is empowering and helps you to contemplate and define immediate goals and ensure your needs are met during the appointment. Organize thoughts and concerns.5 Prior to an appointment, think through questions, concerns, and information you would like to share. Not only does this maximize the benefits of the time spent with a provider, but it can also help to build confidence by feeling prepared and decreasing concerns that you might forget to share an important piece of information or ask a pressing question during the appointment. Be specific.5 Be as specific as possible with questions, concerns, and information you would like to share with the provider. Include as much concrete information as possible. For example, which symptoms have increased or decreased in the past week. What progress has been made toward a specified goal? Consider using the handouts included in this guidebook to assist with goal progress, the impact of symptoms, medication information, etc. Write questions down and bring them to the appointment.5 You may be working with several members of the treatment team. Bringing written questions will be helpful to both you and the provider in making the most of your time together. Questions might include things related to goals, planning for next steps, employment opportunities, the rationale for a particular therapeutic strategy, or information about medication.

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Questions related to medications are common. When meeting with the psychiatrist, physician assistant, or nurse practitioner, you may want to ask questions like6: • • • • • •

Please tell me why I am taking this medication and what changes or improvements I can expect and by when. Would you please tell me how to take these medications correctly? Would you please write out these instructions so that I do not forget or get confused? What side effects might occur, and what do I do if I experience a side effect? How many refills do I have? What should I look for to know the treatment is working? What is the plan if the medications do not work?

If you are considering starting a new medication, some additional questions you may want to ask include5: • How will I know if this medication is working? • How long before I should start to notice an effect from this medication? • What are the side effects of this medication? If I experience any side effects, what should I do? • How can I reach you if I have questions or concerns when first starting this medication? Role play.5 It can be helpful to practice how an appointment might go and what you would like to say before actually meeting with a specific provider. Sometimes talking through goals and questions with a trusted friend, family member, or other treatment provider ahead of time can help you to organize your thoughts and help you feel empowered and prepared.

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HELPFUL TIPS FOR DURING A MEETING WITH TREATMENT TEAM MEMBERS When meeting with a member of your treatment team, in addition to preparing for the appointment ahead of time, these are things you can do during the appointment: •

Review your list. Go over your list of questions, concerns, and information you would like to share.

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Take notes. Have a notebook and pen to take notes.5

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Audio-record the meeting.5 Then you can review the information later and ensure you did not miss any important details. Explain to the treatment team member your reason for wanting to record the meeting, and request permission before recording.5

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Let the team know you created an agenda. Bring a copy for the provider and try to keep the information sheet to one page.5 Share it at the start of the appointment.

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Have a trusted loved one join the appointment.5 It can be very helpful to have another set of ears with you when meeting with a provider. Not only can this person help to relay information and observations during the appointment, but they can serve as an advocate. They can also be a helpful source of information following the appointment to ensure no one missed or misheard important information.

•

Be respectful but persistent when sharing or gathering information. Do not be afraid to advocate for yourself or your loved one. Get involved in developing the treatment plan and goals. Share information and observations. Ask about new treatments.7

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Communication In this section, you have learned: • Communication is how we send and receive messages and how we exchange knowledge and information. • Communication can take many forms. Verbal communication involves using language to share a message and includes spoken or sign language. We also communicate through visual or written means. Nonverbal communication is a type of communication that we sometimes do not realize we are using. Our facial expressions, body language, eye contact, tone of voice, and hand gestures are ways in which we communicate with others nonverbally (without using words). There are times when what we say verbally, and the message we send with our nonverbal language, do not match; this can be very confusing to the recipient. • When symptoms of a mental illness are involved, clear and direct communication becomes even more important. Effective communication skills are necessary to ensure information is conveyed clearly and understood by the recipient.

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In this section, you have learned (continued): • Communicating effectively means that an individual has expressed a thought or shared information so that it can be understood by the recipient. The recipient has listened to the information carefully, checks for understanding, and asks for clarification if they are uncertain that they understood the message correctly. Verbal and nonverbal cues are consistent, and both parties (the recipient/listener and the person conveying the message) are respectful and are open to feedback. • There are also communication pitfalls that can result in roadblocks to communicating effectively. Ineffective communication can lead to stress and tension, having a negative impact on all involved. For an individual living with a mental illness, ineffective communication can have significant negative consequences. In times of high stress or crisis, including when an individual is experiencing more intense symptoms, communication can begin to break down. • When someone is having a difficult experience, it is helpful for everyone to know how to respond in a productive way. • Loved ones often want to know what they can do to support an individual’s treatment and recovery. There is no simple set of guidelines that applies to everyone. It is important to understand some basic facts and information about mental illness and what loved ones may consider in their efforts to support a person living with a mental illness. • Outcomes are best for everyone involved when the treatment team, loved ones, and the individual are working together effectively and efficiently. As integral members of the treatment team, it is important that each of you feels prepared for appointments with the various treatment providers. There are also things you can do during the appointment to ensure the appointment is productive and successful. 151

Communication Sources: 1Sherman,

M.D. (2008). S.A.F.E. Program: Support and Family Education: Mental Health Facts for Families ed.). Oklahoma City: Oklahoma City VA Medical Center. Available at: www.ouhsc.edu/SAFEProgram (3rd

Adapted from a talk given by Christopher Amenson, Ph.D. to the San Luis Obispo chapter of the California Alliance for the Mentally Ill (CAMI). 3

Family Institute for Education, Practice, and Research. (2011). Consumer Centered Family Consultation. University of Rochester Medical Center, NY (unpublished manual). 4American

P. (n.d.) Reclaiming your power during medication appointments with your psychiatrist. Retrieved October 12, 2020, from https://power2u.org/reclaiming-your-power-during-medicationappointments-with-your-psychiatrist/. 6Hupp,

D. & Borovicka, M. (2020). Roadmap from hospital to home: A guidebook for Loved Ones Involved in a Network of Care (LINC). Unpublished manual. 7Glynn,

S.M. (2014). NAVIGATE, Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FEManual.pdf. . 152

Problem-Solving

Included in this section: • Problem-Solving Skills

In this section, you will learn about: • A six-step problem-solving method • Identifying how loved ones can assist in solving problems and overcoming challenges

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Problem-Solving Problems and challenges are an expected part of everyone’s lives. Effective communication provides a solid foundation for problem-solving with others. It is important to familiarize yourself with how to develop a plan for solving problems – and even more important to remember that you do not have to face problems and handle challenges alone. As a group, discuss a concern or a problem you would like to address. Always prioritize any concern that involves a potential safety issue. It can sometimes be tricky to determine a single, specific problem because many problems have multiple layers or require you to make a decision before moving forward. Be sure to identify a singular problem that is at the core of the issue. Each individual should have an opportunity to bring a problem to the group that they would like to work through. Let’s practice solving a problem using a six-step process that can help you organize information, determine what is needed to solve the problem, and implement the proposed solution. An example of this process is provided for you at the end of this section.

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PROBLEM SOLVING SKILLS1,2 STEP ONE: WHAT IS THE PROBLEM?? STEP ONE: WHAT IS THE PROBLEM? WHAT IS THE PROBLEM? List one or two problems or issues that you would like help addressing: 1. 2.

STEP TWO: LIST ALL POSSIBLE SOLUTIONS PROBLEM?

Suggest ideas on how the problem could be addressed. It is important not to dismiss ideas that have already been tried and not to judge the possible solutions. All ideas will be written down, even if everyone does not agree with them. Each person should try to come up with at least one possible solution, including the LINC clinician. It is important to remember that this is brainstorming. No pros and cons should be discussed at this time – just list all possible solutions. This is often a fun and productive process once everyone feels comfortable enough to share any idea without fear of criticism. List one or two potential solutions: 1. 2.

STEP THREE: DISCUSS EACH POSSIBLE SOLUTION Discuss the pros and cons of each item on the list. When discussing pros and cons of potential solutions, look at both the pros and cons of selecting that solution, as well as the pros and cons of not selecting that solution. Pros FOR selecting this solution

Pros for NOT selecting this solution

Cons FOR selecting this solution

Cons for NOT selecting this solution

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STEP FOUR: CHOOSE THE “BEST” SOLUTION Select the most realistic, practical, and simplest solution that is likely going to solve the problem. Be sure to rule out any solutions that likely would not work but save them for future sessions. If the selected solution does not go as planned, the remaining solutions can be tried in the future.

STEP FIVE: PLAN HOW TO CARRY OUT THE SELECTED SOLUTION Discuss additional details about how to achieve the desired outcome by using the selected solution. Identify what is necessary to carry out the plan. Consider any roadblocks or barriers that might arise when carrying out the plan. Practice working through and navigating difficult steps together during the session. Review the plan and be sure each person knows their role in supporting the plan. Information needed to carry out the plan: Who can assist and with what aspect(s) of the plan? _ _______________________________________________________________________________ _______________________________________________________________________________ What is needed to carry out the plan (e.g., money, transportation, skills, additional information)? _ _______________________________________________________________________________ _______________________________________________________________________________ By when do parts of the plan need to be completed? _______________________________________________________________________________ _ _______________________________________________________________________________ What obstacles might get in the way of carrying out the plan, and what can you do to avoid or work around them should they arise? _______________________________________________________________________________ _______________________________________________________________________________ _______________________________________________________________________________

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Other information needed to carry out the plan? _ _______________________________________________________________________________ _

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SIX-STEP PROBLEM-SOLVING PROCESS: EXAMPLE STEP ONE: WHAT IS THE PROBLEM? 1. My car broke down, and I cannot get to work.

STEP TWO: LIST ALL POSSIBLE SOLUTIONS 1. Ask a friend for a ride 2. Take the bus 3. Get the car fixed 4. Walk to work

STEP THREE: DISCUSS EACH POSSIBLE SOLUTION An example pro/con list for walking to work might be: Pros FOR selecting this solution

Pros for NOT selecting this solution

If I choose to walk to work, will still be independent and doing things on my own. I won’t be inconveniencing anyone else by asking for a ride. I will get exercise.

If I choose to NOT walk to work, it is unlikely that I would get robbed when walking home late at night. I won’t have to walk in bad weather. I can sleep in.

Cons FOR selecting this solution

Cons for NOT selecting this solution

If I choose to walk to work, it will make my day much longer if I have to walk. I might get sick if I have to walk in bad weather. I get out of work late at night when it is dark, so that might be unsafe.

If I choose to NOT walk to work, I will have to come up with another solution – and I don’t have money to fix the car or anyone to ask for a ride. I won’t get exercise, and it is a goal of mine to get healthy.

STEP FOUR: CHOOSE THE “BEST” SOLUTION An example might be, after eliminating the option of walking to work, to decide to take the bus because it does not involve potential danger (walking late at night), feeling like you are inconveniencing a friend by asking for a ride, or borrowing money to fix the car.

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STEP FIVE: PLAN HOW TO CARRY OUT THE SELECTED SOLUTION An example plan for taking the bus might include: Who: Dad will drive me to the bus station when there is bad weather; a friend will take me to the bus station to purchase a bus pass What is needed: I will use some of my savings to purchase the bus pass and will ask my friend for a ride to the station to get the pass; I will get up early to walk to the bus stop; I will check the weather the day before to ensure I will not need a ride from dad When: I need to purchase the bus pass before my next day of work, which is in three days What obstacles: The weather forecast may be incorrect, but dad said I can call him one hour before I need to ride a work if the weather is bad; if I miss the bus my cousin said I can call her for a ride, but I can only do this once; I might oversleep and miss the bus, so I will purchase an alarm clock as back up; the bus doesn’t run after I get out of work because it is too late, so I will speak with my boss tomorrow about changing my schedule (and if I am unable to change my schedule, my brother has agreed to pick me up after work on the way home from his job)

STEP SIX: REVIEW IMPLEMTATION AND PRAISE ALL EFFORTS At a follow-up session, discuss each person’s experience in carrying out the plan. What worked? What did not go as planned? Were there any unforeseen obstacles? If so, what did you do to overcome them? What was the outcome of implementing this plan? It is important to focus on what was achieved (e.g., what worked well, what was the experience like working together, how did you overcome unanticipated obstacles). However, if the proposed solution did not achieve the desired outcome, review the plan and make any necessary changes. Then try to implement the modified plan before the next LINC session. Each person involved in the LINC sessions will have an opportunity to bring an individual problem to the table and come up with a plan. After each person has had an opportunity to create and implement a plan for the problem they brought to the group, try this activity again – this time addressing a shared problem that the group is facing. It is important that everyone is supportive of one another when there are difficulties or adversity in their lives. And remember, unsuccessful attempts are NOT failures – they are lessons from which everyone can learn.

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Problem-Solving

In this section, you have learned: • Problems and challenges are an expected part of everyone’s lives. Effective communication provides a solid foundation for problemsolving with others. • It is important to discuss steps toward – and create a plan for – solving problems. This six-step process can help you organize information, determine what is needed to solve the problem, and implement the proposed solution. Identifying how loved ones can assist you in overcoming challenges you face is an important step.

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Problem-Solving Sources: 1NAVIGATE,

Family Education Program (FEP). Unpublished manual. Downloaded from http://www.navigateconsultants.org/wp-content/uploads/2017/05/FE-Manual.pdf 2Family

Institute for Education, Practice, and Research. (2011). Consumer Centered Family Consultation. University of Rochester Medical Center, NY (unpublished manual)

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Closing Remarks and Accessing Additional Resources Included in this section: • LINC: In Summary • Accessing Additional Resources

In this section, you will learn about: • Additional resources available to you and your loved ones • Next steps for you and your loved ones to take

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Closing Remarks and Accessing Additional Resources LINC: IN SUMMARY We hope that you have benefitted from participating in the Loved Ones Involved in a Network of Care (LINC) program. The goal of LINC has been to offer information and resources, practice skills, and provide support to individuals living with a mental illness and their identified loved ones. By participating in LINC, we hope that feel better equipped to handle challenges that may come your way – and know that help and support are here when you need it! We hope that the information and skills will empower you to actively support one another and to effectively communicate needs with providers. There is hope for recovery. Recovery should be the expectation. And together you can get better, do better, and stay better. But now you may be asking yourselves, “What’s next?” In addition to the resources below, your LINC clinician can provide you with additional information on available resources at the agency or in your community (e.g., National Alliance on Mental Illness).

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ACCESSING ADDITIONAL RESOURCES National Alliance on Mental Illness (NAMI) is the nation’s largest grassroots organization for people with mental illness and their families. Founded in 1979, NAMI has affiliates in every state and more than 1,100 local communities across the country. Key programs of NAMI include NAMI Basics, Connections, Family-to-Family, and In Our Own Voice. These programs cover a wide range of topics, and there is information available in Spanish. Please visit the NAMI website at www.nami.org for additional programming information and to find the NAMI affiliate nearest you. National Suicide Prevention Lifeline: 1-800-273-TALK (8255) The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. You can also visit https://suicidepreventionlifeline.org/ to connect with counselors for emotional support and other services via web chat, speak to someone in Spanish, or access information for the deaf or hard of hearing. Text Lines: Crisis Text Line Text HOME to 741741 The Crisis Text Line is available to offer 24/7 support for any crisis. HOPELINE Text HOPELINE to 741741 HOPELINE™, offered by Center for Suicide Awareness. A free emotional support service providing hope, help, and support (via text) when it’s needed the most. Its purpose is to offer support and resources before situations rise to crisis level. National Helpline: 1-800-662-HELP (4357) The U.S. Substance Abuse and Mental Health Services Administration has established a free, confidential information service (in English or Spanish), open 24 hours/365 days, for individuals and family members facing mental health or substance use disorders. This service provides referrals to local treatment providers, support groups, and other community-based organizations. You can also visit SAMHSA’s online Behavioral Health Treatment Services Locator at https://findtreatment.samhsa.gov/. Crisis Intervention Team Trained Officers for Emergency Situations Should you need to call 9-1-1 in an emergency, be sure to request a Crisis Intervention Team (CIT) trained officer. If the dispatcher is unsure what a CIT officer is, request an officer who has specialized training for mental health emergencies. When making this call, it will be important to have this information available: current threat, access to a weapon, current symptoms, what has helped in the past, history of violent behavior. 166

Closing Remarks and Accessing Additional Resources In this section, you have learned: • There are additional local and national resources available to you and your loved ones. • Your LINC clinician is available to you and your loved ones as an ongoing resource and support. • Next steps for you and your loved ones to take in the journey towards mental health recovery.

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THANK YOU FOR PARTICIPATING AND ENGAGING IN THE LOVED ONES INVOLVED IN A NETWORK OF CARE (LINC) PROGRAM!

Remember that your LINC clinician is available to answer your questions and try to meet your needs. This is true for each person who has joined together during the LINC program. It is our hope that you will continue to develop and practice the skills you have learned in this program as you move forward.

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