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The Tie That Binds and Heals:
Families' Life Experiences with Mental Illness
Stressors, Coping, Adaptation, Recovery

Prevalence of Mental Illness

• 22.1% of Americans ages 18 and older (one in five adults) receive a diagnosis of mental illness in a given year (NIMH)
• Effects of mental illness touch many family (one in four) almost 50% of the United States population
• 66% of individuals diagnosed with mental illness live with a family member without adequate support services
• Even when individuals live separately, 60% of families continue to provide time, money, and social support on a daily or weekly basis

Statement of the Problem ... Families are the vital link between home and community and is the most powerful factor affecting the outcome of the individual's recovery.

• Families are frustrated with a mental health system that is failing to consider their needs
• Families are not included in treatment planning or collaboration efforts
• Families are disappointed in the perceived inadequacy and fragmentation of mental health services
• Families are angered by their negative experiences in working with mental health professionals who continue to blame them

Consequences to Families

• Feelings of guilt and responsibility are intensified
• Feelings of alienation from mental health professionals
• Environmental climate of blame wears down effective family relationships
• Experiences with mental illness weaken their ability to support their family member

Poor person-environment fit between the complex and challenging needs
of individuals diagnosed with mental illness, their families, and mental
health professionals who are often ill equipped to provide appropriate
mental health services--increasing objective burdens for families

Goals of the Research Study

• Family member's experiences and perspectives were explored, focusing on family stressors, coping skills, and adaptation of families experiencing mental illness
• Mental health professionals' experiences and perspectives were explored, focusing on the challenges and rewards of working with families experiencing mental illness, as well as the availability of mental health services for families.
• The concepts about causation and recovery were examined with both family members and mental health professionals

Research Questions

• What caregiving burdens do family members identify when managing a family member's mental illness?
• What types of self-care techniques do family members utilize when managing a family member's mental illness?
• What rewards and reciprocities (give and take) of human interaction have family members experienced with their family member diagnosed with mental illness?
• From the families' perspective what are their experiences with the mental health system and its services?
• From the perspective of mental health professionals, what are their experiences in working with families experiencing mental illness?
• From the perspective of families and mental health professionals, how do they define and explain the following concepts and to what extent are these definitions/explanations congruent?
  • Causation of mental illness
  • Recovery for individuals diagnosed with mental illness and their family members

Significance of Research Study

• Acknowledge families' life experiences
• Acknowledge affects mental illness has on all family members (parents, siblings, spouses, offspring)
• Provide a "voice" to family members
• Mental health professionals receive a renewed understanding of families' life experiences with mental illness
• Enable mental health professionals to provide quality and effective mental health programs for families experiencing mental illness
• Develop educational programs for families
• Develop training programs for mental health professionals

Historical Perspective

• Colonial times ... it was the family's responsibility to care for their family member experiencing symptoms of mental illness and bizarre behaviors
• 1700s ... opening of the first asylum provides a glimpse of care removed from the family
• 1950s ... deinstitutionalization with many individuals landing on their family's doorstep
• Today ... families have been required to assume an increasingly heavy burden of responsibility for the care of their family member diagnosed with mental illness

Primary Roles of Families ... The philosophical, economic, and political mood, which as encouraged the development of community care, has frequently come to simply mean care by the family.

• Caregiver ... families assist and supervise their family member in obtaining their basic needs (e.g., shelter, food, finances) and teaching them activities of daily living (e.g., self-care, household chores)
• Case Manager ... families can assume 30% or more of their waking hours in caring for their family member diagnosed with mental illness; helping them to connect to the mental health system, obtain services, medical and treatment options, and wade through the befuddling system of entitlement on a day-to-day basis

Methodology

• Qualitative and phenomenological research design
• A "warm" analysis, wherein empathy is integral to this study in an attempt to make sense of, and interpret the meanings of and perceptions of how mental illness affects the lives of family
• Hennepin County the largest populated county (23% of population) of Minnesota
• Maximum variation sampling was used to identify participants who were likely to be "information-rich"

Phase I: Families

• 40 participants; 10 family members from each family subgroup: parents, siblings, spouses, and offspring
• Semi-structured in-person interview exploring the family member's life experiences
  • Coping, adapting, and managing a family member's mental illness
  • Caregiving burdens and self-care techniques
  • Experiences with mental health services
  • Perceptions of the causation of mental illness
  • Necessary components needed for recovery
• Phenomenological approach provided an opportunity for family members to voice their experiences so that a comprehensive reflective analysis could portray the essences of their life experiences with mental illness (Moustakas)

Phase II: Mental Health Professionals

• 10 program directors from Minnesota Rule 29 Community Mental Health Clinics
• Telephone interview or completing questionnaire via postal mail
  • Explored their views about the challenges and rewards of working with families experiencing mental illness
  • Availability of services for families
  • Training
  • Stigma
  • Causation of mental illness
• Snapshot view of the connection of the person-in-environment perspective

Parents as Participants

• Coping with mental illness for an average of 13 years
• Majority of participants female (mother)
• All over the age of 50
• Majority married
• All had some college experience; 80% had a college degree
• Half retired; with over half reported incomes of over $75,000 annually
• Majority indicated their religious affiliation as none
• All were Caucasian

Siblings as Participants

• Coping with mental illness for an average of 10 years
• Majority of participants female (sisters)
• Age 18 to 59, with half older than their brother/sister
• Majority of participants were either divorced or single and never married
• Majority had some college experience; 50% had a college degree
• Half employed; reported earning $35,000 to $49,999 annually
• Religious affiliations ranged from none to Catholic, Non-denominational, Jewish, Lutheran, and Presbyterian
• All were Caucasian

Spouses as Participants

• Majority knew about their spouses mental illness prior to their marriage; two whose mental illness appeared after their marriage are now divorced
• Participants were half male (husbands) and half female (wives)
• Age 18 to 59
• Majority of participants were married
• All had some college experiences; 60% had a college degree
• All were employed; half reported earning over $75,000 annually
• Religious affiliations ranged from none to Christian, Lutheran, and Hindu
• Majority were Caucasian; with one identifying himself as East Indian (Asian/Pacific Islander)

Offspring as Participants

• Majority of participants were female (daughters)
• Age 28 to 49
• Majority of participants were either divorced or separated
• Majority had some college experience; over half had a college degree
• Half employed; reported earning $35,000 to $49,999 annually
• Religious affiliations ranged from none to Christian, Catholic, Lutheran, Morman, and "Spiritual"
• Majority were Caucasian; with one identifying herself as Hispanic/Latin

Most Devastating to Families

• Ambiguous Loss defined as the lack of clarity which causes confusion and stress, and is often tormenting (Boss, 1999)
• Disenfranchised Grief defined as the experience of grieving that cannot be openly acknowledged, publicly mourned, or socially supported, due to the stigma that often accompanies mental illness (Doka, 1989)
• Parents loss of their own dreams and expectations for their child
• Siblings experience a loss of who their brother/sister had been
• Spouses dreams and expectations of their marriage is shattered
• Offsprings loss of a relationship with their parent diagnosed with mental illness

Subjective Burdens -- Emotional Distress

• Sadness: grief, loss, depress, helplessness and hopelessness was parents primary response
• Anger: frustration; not knowing what to do, where to go, or how to help was siblings, spouses, and offspring primary response

• Parents found themselves overwhelmed with caring for an adult son/daughter
  • Question their own parenting skills
  • Greatest fear is what will happen to their child if they are no longer available
• Siblings reported feeling trapped, bitter, and resented the loss of parents time
  • Presumed the role of caregiving for their parents
  • Greatest fear were concerns of their own mental health
• Spouses identified their anger as "excruciating" (BM)
  • Emotional abuse was suggested by several spouses
  • Greatest fear relates to the loss of their relationship
• Offspring identified their anger as unmanageable and chaotic, which appears to reflect the environment in which they grew up
  • Self focus to get their needs met
  • Greatest fear were concerns of their own mental health

Objective Burdens -- Daily Challenges ... Symptoms of mental illness and loss of family

• Parents ... changes in their physical environment
• Spouses .. .loss of their relationship
• Siblings and Offspring ... changes in family dynamics
• Parents take on the caregiving role of their adult children out of responsibility or guilt
  • Actively involved in their child's treatment
  • Loss of personal time, career and retirement plans
• Siblings struggle with communication and how to motivate their brother/sister
  • Future caregiving responsibility
  • Own mental health concerns
• Spouses are frustrated with being their husband/wife's caregiver
  • Emotional abuse
  • Communication concerns
• Offspring found themselves having to "grow up" sooner than normal due to caregiving responsibilities
  • Issues of feeling safe and secure
  • Continued caregiving responsibilities as their parent ages

Coping: A Process of Adaptation ... Humbling experience for parents and lessons of compassion, empathy, and acceptance for siblings, spouses, and offspring

• Parents -- values and belief system, education, connection to others
• Siblings -- connection with others, values and belief system, family
• Spouses -- values and belief system, family, education
• Offspring - -self care, family, connecting with others

Mental Health System: Family Perception

• Communication Limitations
  • Policy of "family inclusion" which includes acceptance, validation, acknowledgement, and respect
• Education Limitations
  • Advice in how to maximize their family member's potential
  • Coping skills in answering the following questions, What do I say? How do I deal with him/her? Am I helping or hurting?
  • Boundary setting (self-care vs. caregiving), problem-solving skills, time management, anger management, stress management, an emotional regulation
  • Need to learn self-care skills and be able to answer the question, Who am I?
  • Knowledge and information about mental illness
  • Groups, specific to parents, siblings, spouses, offspring; possible mentor or sponsors as you would find in AA or Alanon groups
  • Resources available

Strength of Mental Health System

• Parents focused on the mental health system as a whole
  • "We could not live without it" (RL)
• Sibling's focused on the mental health services their brother/sister was receiving
  • Group home, in-home services, medications
• Spouses focused on their husband/wife's willingness and motivation in obtaining appropriate services
  • "For somebody who is willing and motivated to use; to work to get better, that has a good therapist, a good doctor, that is willing; who is on medication and is willing to work with the medications, than the tools are there for them to get better ... but, if the person is not willing to get better, there are not checks and balances" (RL)
• Offspring's focused on mental health professionals
  • Resourceful, knowledgeable, supportive

Recovery Process

• Acceptance; accountability/responsibility and the "do" attitude/desire to recover
• Support Network including friendships/companionship of peers
• Family Support
• Medication Management
• Individual and group therapy
• Aftercare services for mental health monitoring and follow-through

"Medication, access to good therapy, good family and friend network,
support network outside of therapy ... your environment needs to be
supporting meaning you know where you are, doing something that
you feel is worthwhile--a positive environment." (CW)

Challenges/Rewards of Working with Families

• Resistance by the client to include families
• Family member not available ... deceased living far away, burned out, or just not wanting involvement
• Projective nature of relationship -- you are the problem and we are not
• Being able to educate family members, validating, and seeing client develop a quality of life with the help and support of family

Recommendations for Families

• Involvement in the first (intake) session
• Provide a history of symptoms
• Be willing to help, listen and have a willingness to adapt to changes
• Support, encouragement, and validation to their family member

Implications for Practice and Policy

• Individuals Diagnosed with Mental Illness
  • Development of a Recovery Program, including the following components:
    • Renewing hope and commitment
    • Redefining self
    • Incorporating illness
    • Being involved in meaningful activities
    • Overcoming stigma
    • Assuming control
    • Empowered and exercising citizenship
    • Managing symptoms
    • Being supported by others
• Family Needs
  • Information about mental illness; hands-on-training about mental illness
  • Development of skills for coping with and managing mental illness
  • Development of self-care skills
  • Development of caregiving skills; families are looking for information in helping their family member diagnosed with mental illness to maximize their potential and develop an authentic quality of life
  • Psychoeducational groups for families specifically addressing the needs of all family members -- parents, siblings, spouses, and offspring; providing informational and emotional support in a holistic family-centered atmosphere
• Mental Health Professionals
  • Development of educational programs addressing the following issues:
    • Collaboration with family
    • Basic information on mental illness
    • Stress management skills for families
    • Utilization of the mental health system
    • Helping family members meet their own needs
    • Behavioral issues
    • Manage professional and ethical issues, including issues of confidentiality
• Mental Health System
  • Families are not using the mental health system as intended as a result of their negative experiences (e.g., excluded, ignored, disrespected)
  • Mental health services may be available but due to a complicated system that is fragmented and disconnected the delivery of services is ineffective
  • Family members and mental health professionals are all seeking ways of better communication and yet this need continues to be unmet ... development of a communication policy is needed which includes acceptance, validation, acknowledgement, and respect for all parties involved

Limitations

• Small sample of families in Minnesota solicited from mental health organizations that typically advocate for individuals and families experiencing mental illness and may have more knowledge and information than families not yet connected to mental health services
• Participants were primarily Caucasian from middle class backgrounds and urban population and the research study focused on adults diagnosed with mental illness and did not address the issues of families with children (under the age of 18) experiencing mental illness and their unique challenges
• Program directors were difficult to engage in the research study due to limited time availability

• Invest in proven, cost-effective practices (i.e., evidence-based practices)
• Increase funding tied to performance and recovery
• Improve data collection
• Increase access to information
• Involve consomers and families at all levels
• Eliminate discrimination

Getting help means getting access to information," Duckworth said. "When 40 states can't pass a pop quiz on providing basic information to the people whom they are supposed to serve, then the system is in trouble."

Source
National Alliance on Mental Illness

• Confused thinking
• Prolonged depression
  (sadness or irritability)
• Feelings of extreme highs and lows
• Excessive fears, worries and anxieties
• Social withdrawal
• Dramatic changes in eating or sleeping habits
• Strong feelings of anger
• Delusions or hallucinations
• Growing inability to cope with daily problems and activities
• Suicidal thoughts
• Denial of obvious problems
• Numerous unexplained physical ailments
• Substance abuse

In Older Children
and Pre-Adolescents

In Younger Children

• Changes in school performance
• Poor grades despite strong efforts
• Excessive worry or anxiety (i.e., refusing to go to bed or school)
• Hyperactivity
• Persistent nightmares
• Persistent disobedience or aggression
• Frequent temper tantrums

Source
Mental Health America