The Tie That Binds and Heals

1. The Tie That Binds and Heals Families’ Life Experiences with Mental IllnessStressors, Coping, Adaptation, Recovery __________________________________________________________________________________________________________ Jody L Friesen Grande PhD LICSW BCD

2. 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 families (one in four)almost 50% of the United States population • 66% of individuals diagnosed with mentalillness live with a family member withoutadequate support services • Even when individuals live separately, 60%of families continue to provide time,money, and social support on a daily or weekly basis

3. 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 perceivedinadequacy and fragmentation ofmental health services • Families are angered by their negative experiencesin working with mental health professionals whocontinue to blame them

4. 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 needsof 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.

5. 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

6. 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 membersexperienced with their family memberdiagnosed with mental illness? • From the families’ perspective what are theirexperiences with the mental health system and its services?

7. Research Questions (Continued) • 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

8. Significance of Research Study • Acknowledge families’ life experiences • Acknowledge affects mental illness has on all family membersparents, siblings, spouses, and offspring • Provide a “voice” to family members • Mental health professionals receive a renewed understanding offamilies’ 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

9. 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 aglimpse of care removed from the family • 1950s … deinstitutionalization with manyindividuals landing on their family’s doorstep • Today … families have been requiredto assume an increasingly heavy burdenof responsibility for the care of theirfamily member diagnosed with mental illness

10. Primary Roles of Families • The philosophical, economic, and political mood, which has encouraged the development of community care, has frequently come to simply mean care by the family • Caregiver … families assist and supervisetheir family member in obtaining theirbasic 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

11. 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”

12. 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 forfamily members to voice their experiences so that acomprehensive reflective analysis could portray the essencesof their life experiences with mental illness (Moustakas)

13. Phase II - Mental Health Professionals • 10 program directors from Minnesota Rule 29 Community Mental Health Clinics • Telephone interview or completing questionnaire via 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 • Needed components for recovery • Snapshot view of the connection of the person-in-environment perspective

14. 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

15. 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

16. 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 asEast Indian (Asian/Pacific Islander)

17. Offspring as Participants • Majority of participants where 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, Mormon, and “Spiritual” • Majority were Caucasian; with one identifying herself as Hispanic/Latin

18. 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 andexpectations for their child • Siblings experience a loss of whotheir 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

19. Subjective Burdens -- Emotional Distress • Sadness__grief, loss, depression, helplessness and hopelessness • Parents primary response • Anger__frustration; not knowing what to do, where to go, or how to help • Siblings, Spouses, and Offspring primary response

20. Subjective Burdens (Continued) • 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

21. Objective Burdens -- Daily Challenges • Symptoms of mental illness • Loss of family • Parents … changes in their physical environment • Spouses … loss of their relationship • Siblings and Offspring … changes in family dynamics

22. Objective Burdens (Continued) • Parents take on the caregiving role for 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

23. Coping -- A Process of Adaptation • Humbling experience for parents • Lesson 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

24. 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, and emotional regulation • Need to learn self-care skills and be ableto 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 wouldfind in AA or Alanon groups • Resources available

25. 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; tow work to get better, that has a good therapist, a good doctor, that is willing; who is on mediation 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

26. 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 … yourenvironment needs to be supporting meaning you knowwhere you are, doing something that you feelis worthwhile--a positive environment (CW)

27. 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 education family members, validating, and seeing client develop a quality of life with the help and support of family

28. 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

29. Implications for Practice & 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

30. Implications for Practice & Policy (Continued) 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 specificallyaddressing the needs of all family members -- parents, siblings, spouses, and offspring;providing informational and emotional supportin a holistic family-centered atmosphere

31. Implications for Practice & Policy (Continued) 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

32. Implications for Practice & Policy (Continued) 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 toa complicated system that is fragmented anddisconnected the delivery of services is ineffective • Family members and mental health professionalsare all seeking ways of better communicationand yet this need continues to be unmet …development of a communication policy is neededwhich includes acceptance, validation, acknowledgement,and respect for all parties involved

33. 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 theresearch study due to limited time availability

34. To My Family and Friends We can only be said to be alive in those momentswhen our hearts are conscious of our treasures (Thornton Wilder)