The Role & Perspective of Family Members of Individuals with Serious Mental Illness Ms. Karen Shein and Dr. Marjorie Olney
USE YOUR PHONE TO TEXT: To: 22333 Message: karens888
How much do you agree? 1. HIPAA prevents me from
3. I am familiar with resources
2. In my experience, family
4. I understand what families
communicating with family members. members have been more of a hindrance than a help.
designed to support and assist family members. go through.
Learning Objectives You’ll be able to: • Identify your own attitudes and values regarding family members • Describe the the role family members play in the recovery process • Direct family members to resources to assist them, their loved one, and to be able to work constructively with providers • Articulate HIPAA regulations regarding sharing information with family members • Secure the assistance of family members in ways that support client recovery
Background: History
Background: Family Burden & Strengths • Emotional Toll: Caring for someone with SMI is more stressful
than caring for someone with a physical disability. Families experience grief. – (Magliano, 2006; Ozgul, 2004)
• Stigma:
Creates barriers to care and support and adds to stress. – (Mak & Cheung, 2012; Maralidharan, et. al, 2014)
• Adaptability: Families are resilient. Adaptive coping strategies reduce burden. – (Heru, 2000; Van der Sanden, et. al, 2016)
• Families are Strong: In spite of stressors, families exhibit coping skills. – (Doornbos, 1996)
Background: Value of Family Support • Family is De Facto Provider: – Families provide the majority of care. (Cheung, et.al, 2016)
• What the Family Does: - Monitoring, managing the illness,
maintaining the home, encouraging, socializing, locating resources. (Doornbos, 2001)
• Family Involvement Desired: - People with SMI want family involvement. (Murray-Swank, et. al, 2007)
• Family Involvement Works: Reduces patient relapse,
improves social functioning, enhances caregivers’ knowledge of SMI, and reduces costs of care. - (Sherman & Carothers, 2005)
Background: Role of the Professional • Assessing Risk: – Seek input from families. (Katy, et. al, 2014) • Value of Psychoeducation: - Reduces stigma and family burden. Increases understanding of SMI and family cohesion. (Levy-Frank, et. al. 2011; Luckstead, et. al, 2013; Palli, et. al, 2015; )
• Value of Evidence-Based Interventions: Available and proven effective. - (Jane-Llopic, et. al., 2011; McWilliams, et. al., 2010)
• Providing Support to Families: - Being present, listening, sharing, empowering. (Gavois, et. al, 2006)
• Treating Whole Families: Interventions found to be more effective when provided to whole family - (Suresky, 2013)
Methodology • Qualitative research • Searched online sites containing personal narratives of family members • Reviewed 25 online family blog sites • Selected blogs by parents of adult children with SMI • Analyzed and coded 50 published posts • Identified emerging themes
Emerging Themes
I don't need your meds Benefits of family inclusion
"Meddling" family
Why am I excluded? "Ignorant" Clinicians
Clinician
Individual with SMI
training
Conflicting perspectives
Family member as client
awareness
Stubborn loved one
Family Member
advocacy No Break/vacation
Growth
For others Coping Skills
hobbies
Support groups
resilience
Walking on eggshells
Family Perspective
therapy
Living expenses of loved one
Travel to/for loved one Impact on holidays/celebrations
No home visitors
meditation/yoga
Debts of loved one financial
lifestyle gardening
treatment
antidepressants Bail
Illness or defiance/laziness?
Quest for knowledge
repairs
Burden
asault
homelessness
What is happening?
physical
Depression
Drugs or illness?
shame Loss of meaning in life
What to do?
Setting Expectations
helplessness
Loss of Relationship
How can I get my loved one to...(take meds, etc)?
therapy
Treatment adherence
clubhouses Residential treatment
self work
Surviving Suicide
grief
marriage
Special needs trust DBSA
I can't fix it!
siblings
SSI/SSDI Locating support
Setting Boundaries
Blame from self and others
emotional
Locating resources
Too much too little?
hospitalizations
24/7 Caregiver
Normal teen behavior?
Too much too little?
They are not well enough to make decisions so I must act for them
activism
For loved one
Understanding "denial"
I know my loved one better than anyone
"Controlling" family
Uncooperative client with SMI
Counseling family trauma
detaching
They ruined my life
"Controlling" Clinician
SMI is a family illness
Helping others
For self
I must be his/her advocate to demand the services they need
Grieving the living
Frustration/anger Extended family
isolation
Grieving loss of hopes and dreams
fear and trauma Social Media Groups
clinicians Psych hospital
Amador and other books NAMI Family to Family Evidence-Based Program
NAMI
NAMI Family Support Groups
"Nobody" understands
No hospital beds When the system
Peer support
Ignored/ by clinicians-HIPAA
"Experts" don't understand SMI
Consolidating
Excluded by Clinicians Rejected by ill loved one Where is my loved one?
crisis police
blame by loved one
Lack of contact
Can't go out or on vacation
Findings The following three themes emerged 1. Family Emotional Experience
3. The System
Grief & Shame
Advocacy
Mental Health System
Despair
Support
Legal System
Acceptance & Hope
M
2. Family Role
Positive Experiences
Findings: Theme 1 1. Family Emotional Experience
3. The System
Grief & Shame
Advocacy
Mental Health System
Despair
Support
Legal System
Acceptance & Hope
M
2. Family Role
Positive Experiences
Theme 1: Family Emotional Experience
Theme 1: Family Emotional Experience
Grief. “How do you advocate when the world sees
a bum, and you see the little boy you carried in your womb, nursed at your breasts, laughed and played with, and knew in your heart was the world’s greatest child? And you know somewhere, trapped inside his brain, the world’s greatest child is lost and trying to be found?”
K
Theme 1: Family Emotional Experience
Theme 1: Family Emotional Experience
Shame. Your son-in-law's grilling steak for the
family because we're celebrating the birth of our daughter's second child this past weekend. He looks for the missing steak knives in your cupboard because he knows there should be more. You quietly tell him those knives are impounded at the police station.
K
Theme 1: Family Emotional Experience
K
Theme 1: Family Emotional Experience
Despair. “My husband and I are educated
and resourceful people, devoted to our children’s happiness and well-being, and yet we couldn’t protect them.”
K
Theme 1: Family Emotional Experience
Acceptance & Hope. “I’ve devoted
my life to my son, as a mother should. My son lives with me in a supportive, loving home, we keep stressors to a minimum, we eat nutritional meals, we talk, we listen, we empathize, we plan. We are all in this together, and there, but for the grace of God, go any one of us.”
K
Theme 1: Family Emotional Experience
K
Findings: Theme 2 1. Family Emotional Experience
3. The System
Grief & Shame
Advocacy
Mental Health System
Despair
Support
Legal System
Acceptance & Hope
M
2. Family Role
Positive Experiences
Theme 2: Family Role
Theme 2: Family Role
Advocacy: “We’d like our lives back, too, believe me, but not at the expense of Ben’s life…He is happy, adores his job, participates in activities with family and friends, and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.”
An Asian-American Family’s Story
Theme 2: Family Role
Support: “It seemed like things were going in the right direction — we were working on stabilizing him and filling out Medicaid and disability applications but with no guarantees.”
Findings: Theme 3 1. Family Emotional Experience
3. The System
Grief & Shame
Advocacy
Mental Health System
Despair
Support
Legal System
Acceptance & Hope
M
2. Family Role
Positive Experiences
Theme 3: The System
Theme 3: The System
Mental Health System: “I recall when my daughter was 19 and homeless. The only way I could reach her was to call a day shelter. I would call and be told that “we cant confirm or deny that your daughter is here”. I would then say she is expecting my call, and was able to speak to her. So this shelter was able to work around the issue and I am thankful as this was the only way I knew that she was alive.”
K
Theme 3: The System
K
Theme 3: The System
Legal System: “The implication here is that,
if a juvenile's mental illness is severe enough, once she's of age we have to do to her what we generally do to mentally ill adults who commit crimes - warehouse them in prisons instead of humanely incapacitating or treating them.�
K
Theme 3: The System
K
Theme 3: The System
Positive Experiences: “I'm very thankful for your referral to this service and for all your assistance and caring support. I wish you could still be Paul’s case manager, but it looks like we need to stay outside of Molina to keep him connected to these in-home services. Thank you for everything. Please stay as wonderful, understanding and compassionate as you are. You're a bright spot in a challenging mental health system.”
K
Recommendations & Discussion • Use HIPAA regulations correctly • Welcome and consider input from family members • Offer to answer generic questions posed by family members • Address burden through resources such as NAMI • Recognize and empathize with the experience of family members • Explore options for partnering with family members • Other ideas?
Recap of Learning Objectives • Attitudes and values regarding family members • Role of family members in recovery • Resources to assist families • HIPAA regulations and family members • Collaborating with families
M
https://issuu.com/krshein
In Closing: “There are no difficult people. There are only people whose view of themselves, their world and other people we don’t yet understand.” – Judith Beck