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The Tie That Binds and Heals

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The Tie That Binds and Heals. Families’ Life Experiences with Mental Illness Stressors, Coping, Adaptation, Recovery __________________________________________________________________________________________________________ Jody L Friesen Grande PhD LICSW BCD. - PowerPoint PPT Presentation
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  • The Tie That Binds and HealsFamilies Life Experiences with Mental Illness Stressors, Coping, Adaptation, Recovery__________________________________________________________________________________________________________

    Jody L Friesen Grande PhD LICSW BCD

  • Prevalence of Mental Illness22.1% 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 population66% of individuals diagnosed with mental illness live with a family member without adequate support servicesEven when individuals live separately, 60% of families continue to provide time, money, and social support on a daily or weekly basis

  • Statement of the ProblemFamilies are the vital link between home and community and is the most powerful factor affecting the outcome of the individuals recovery

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

  • Consequences to FamiliesFeelings of guilt and responsibility are intensifiedFeelings of alienation from mental health professionalsEnvironmental climate of blame wears down effective family relationshipsExperiences 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 StudyFamily members experiences and perspectives were explored, focusing on family stressors, coping skills, and adaptation of families experiencing mental illnessMental 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 familiesThe concepts about causation and recovery were examined with both family members and mental health professionals

  • Research QuestionsWhat caregiving burdens do family members identify when managing a family members mental illness?What types of self-care techniques do family members utilize when managing a family members 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?

  • 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 illnessRecovery for individuals diagnosed with mental illness and their family members

  • Significance of Research StudyAcknowledge families life experiences Acknowledge affects mental illness has on all family members parents, siblings, spouses, and offspringProvide a voice to family members

    Mental health professionals receive a renewed understanding of families life experiences with mental illnessEnable mental health professionals to provide quality and effective mental health programs for families experiencing mental illness

    Develop educational programs for familiesDevelop training programs for mental health professionals

  • Historical PerspectiveColonial times it was the familys responsibility to care for their family member experiencing symptoms of mental illness and bizarre behaviors1700s opening of the first asylum provides a glimpse of care removed from the family1950s deinstitutionalization with many individuals landing on their familys doorstepToday 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 FamiliesThe 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 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 choresCase 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

  • MethodologyQualitative and phenomenological research designA 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 MinnesotaMaximum variation sampling was used to identify participants who were likely to be information-rich

  • Phase I - Families40 participants; 10 family members from each family subgroup: parents, siblings, spouses, and offspringSemi-structured in-person interview exploring the family members life experiencesCoping, adapting, and managing a family members mental illnessCaregiving burdens and self-care techniquesExperiences with mental health servicesPerceptions of the causation of mental illnessNecessary components needed for recoveryPhenomenological 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 Professionals10 program directors from Minnesota Rule 29 Community Mental Health ClinicsTelephone interview or completing questionnaire via mailExplored their views about the challenges and rewards of working with families experiencing mental illnessAvailability of services for familiesTrainingStigmaCausation of mental illnessNeeded components for recoverySnapshot view of the connection of the person-in-environment perspective

  • Parents as ParticipantsCoping with mental illness for an average of 13 yearsMajority of participants female (mother)All over the age of 50Majority marriedAll had some college experience; 80% had a college degreeHalf retired; with over half reported incomes of over $75,000 annuallyMajority indicated their religious affiliation as noneAll were Caucasian

  • Siblings as ParticipantsCoping with mental illness for an average of 10 yearsMajority of participants female (sisters)Age 18 to 59, with half older than their brother/sisterMajority of participants were either divorced or single and never marriedMajority had some college experience; 50% had a college degreeHalf employed; reported earning $35,000 to $49,999 annuallyReligious affiliations ranged from none to Catholic, Non-denominational, Jewish, Lutheran, and PresbyterianAll were Caucasian

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

  • Offspring as ParticipantsMajority of participants where female (daughters)Age 28 to 49Majority of participants were either divorced or separatedMajority had some college experience; over half had a college degreeHalf employed; reported earning $35,000 to $49,999 annuallyReligious affiliations ranged from none to Christian, Catholic, Lutheran, Mormon, and SpiritualMajority were Caucasian; with one identifying herself as Hispanic/Latin

  • Most Devastating to FamiliesAmbiguous 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 childSiblings experience a loss of who their brother/sister had beenSpouses dreams and expectations of their marriage is shatteredOffsprings loss of a relationship with their parent diagnosed with mental illness

  • Subjective Burdens -- Emotional DistressSadness__grief, loss, depression, helplessness and hopelessnessParents primary responseAnger__frustration; not knowing what to do, where to go, or how to helpSiblings, Spouses, and Offspring primary response

  • Subjective Burdens (Continued)Parents found themselves overwhelmed with caring for an adult son/daughterQuestion their own parenting skillsGreatest fear is what will happen to their child if they are no longer availableSiblings reported feeling trapped, bitter, and resented the loss of parents timePres

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