Caregivers
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“Family members who take the NAMI Family-to-Family course are better equipped to work with mental health clinicians in a collaborative manner. My bottom-line recommendation? Take this course. It will help you learn to cope successfully with a major challenge in your life, and that, in turn, will help your loved one as he or she works toward recovery.”

-- Peter Weiden, M.D., author of Breakthroughs in Antipsychotic Medications
 

 

The following presentation was prepared by nursing students.  It outlines the issues involved by families that provide care for their children who suffer from schizophrenia.  While specifically targeting schizophrenia, the same issues apply across the spectrum of mental diseases.  The issues are the same no matter which county or city people reside within.  It offers a plan that advocates can follow and raises issues to be considered in creating an outreach to assist those caregivers that are dealing with mental illness.  A key component of this program is NAMI, the National Alliance on Mental Illness.  NAMI is a leading organization in setting the nation's agenda on mental illness and provides classes like  Family to Family in support of caregivers nationwide.

Caregivers for Children with Schizophrenia

    In Washington county, Oregon there are 514,269 people.

    Based on national incidence rates 5,657 people in Washington county have schizophrenia.

    That means 5,657 FAMILIES have caretaking responsibilities and burdens.

    Assuming a 3 person family that means there are 12,000 caregivers under extreme stress.

    That means the employers and support networks of these families are open to additional stress.

The Costs

    Medical care costs of chronic diseases account for 75% of nation’s $1.4 trillion medical costs.

    Mental disorders account for more than 15% of the overall burden of disease from all causes.

    Schizophrenia is a chronic illness that affects 1.1% of the population.

    The indirect costs of all mental illness imposed $79 billion loss on the U.S. economy in 1990

Primary Worksite Issues

    For parents who are at risk for, or experiencing

    caregiver role strain, the following may occur at

    the work place:

    Undermined confidentiality/ privacy

    Stigma

    Financial insecurity

    Inflexible work schedule

    Note:

    Parents of children with mental illnesses will, sooner or later, have difficulties balancing responsibilities as parents and those as employees. They want to do their best at work and be good parents, too. In time, these parents will experience grief, which leads to lowered psychological well-being and health status, and associated anxious/ ambivalent and negative affective parent-child relationship (Godress et al., 2005).
    In regards to financial insecurity, insurance is often insufficient and is very difficult to obtain by the parent at work place , for patients over the age of 22.
     

Primary Worksite Issues II

    Decreased productivity (quality & amount) due to:

      caregiver burnout,

      emotional distress,

      sick and medical leave,

      disruption in the work place,

      social isolation.

Focus Issue:

    Caregiver (parent) burnout

    physical, emotional and mental exhaustion, that may be accompanied by a change in attitude, from positive and caring to negative and unconcerned.

    Common Symptoms:

    a) fatigue, b) Illness

    c) anxiety, d) depression.

    e) Increased work absence

Health Determinants

    Economic (wages, medical insurance, etc.)

    Social support (family, friends, networking)

    Family structure Parent/ caregiver level of education
     

    Family Structure: single mom vs. two-parent family, number of children, other relatives living together.

    Family health status (other chronic illnesses in the family)

    Geography – rural vs. urban

    Type of dwelling

HEALTHY PEOPLE 2010

    Healthy People 2010 is a comprehensive set health promotion objectives for the Nation.

    This proposed program would address the following Health Focus 2010 focus areas:

      Access to Quality Health Services

      Health Communication

      Mental Health and Mental Disorders

      Educational and Community-Based Programs

Health Promotion Goal

    Parents of children with schizophrenia are at risk of caregiver burnout.

    Symptoms usually first appear in school behaviors and performance

    School Nurses/Counselors are the first to identify and intervene with the students and parents.

    School districts/ schools should be able to support the parents, as well.

    There is no partnership between school districts/ schools and critical community resources.

A Critical Resource - NAMI

    NAMI _ National Alliance on Mental Illness

    The nation’s largest grassroots mental health organization.

    NAMI Provides:

      Family and Consumer Peer Education and Support Activities

      Public Education and Information Activities

      Advocacy on Behalf of People Living with Mental Illness and for the Health of our Communities

Proposed Intervention

    Build a bridge between educational systems and NAMI

    Create an ongoing exchange of information:

      Coordinate mutual website links and education about resources.

      NAMI provides written material for caregivers.

      Establish a referral process to connect caregivers to NAMI.

      Establish possible NAMI educational workshops for caregivers in the schools.

       

Outcomes Evaluation

    Outcomes:

    Increased school referrals to NAMI.

    Handouts to school districts and schools, with relevant information.

    Increased school staff/HCP awareness of caregiver stress and symptoms.

    Increased awareness for caregivers of work place survival skills.

Funding

    Possibilities:

    Washington county NAMI, by appealing to the employers within the county and county authorities

    NAMI Oregon, by appealing to the state government

    School districts, by appealing to the Department of Education and employers within the districts

The School Nurse Perspective

    Early identification and support to caregivers is critical to long term stability.

    Nurses and Nurse Practitioners are critical parts of the health care team in multiple settings.

    Often Nurses and Nurse Practitioners are the first to encounter caregivers.

    Symptoms with children are often first seen in the school and general practice settings.

Signs and Symptoms of
Caregiver Role Strain
(Harkreader 2004)

    Preoccupation with care giving

    Poor concentration

    Social isolation/withdrawal

    Poor attention to personal appearance

    Increased irritability

    Increased physical illnesses and

    Increased absence from work and use of sick leave

    Depression

Signs and Symptoms II

    Apprehension about the care receivers future health and the caregivers ability to provide care.

    Apprehension about the possible need to institutionalize the care receiver.

    Apprehension and worry about financial problems due to medical expenses.

    Experiencing stress related to opportunistic illnesses.

Assessment Tools (FCA 2002, 2006)

    Over 200 assessment tools have clinical relevance in evaluating caregiver role strain.

    Study of these assessment tools have identified several domains to include in a caregiver assessment:

      1) The context,

      2) Caregiver’s perception of health and functional status of care recipient,

      3) Caregiver’s values and preferences

      4) Well-being of the caregiver,

      5) Consequences of care giving,

      6) Care-provision requirements (skills, abilities, knowledge), and

      7) Resources to support the caregiver.

Screening Tool (AMA 2001, FCA 2002)

    Practitioners are more likely to use screening tools that are effective and easy to use.

    The AMA developed and tested a brief Caregiver Self-Assessment Questionnaire.

    The tool has sixteen questions designed to evaluate emotional and physical distress.

    Tested on a national sample of caregivers (n= 150), found to be valid and reliable (alpha=.78)

    The tool generally can be used in waiting rooms and as well as part of home care training.

Comprehensive Assessment (FCA 2006)

    A functional caregiver assessment needs to be tailored to the service setting and include the following:

      Be caregiver centered, no longer than necessary

      Improve the caregivers’ understanding of their role and what they need to know to carry out tasks;

      Identify information needed to develop a care plan and referrals;

      And include caregiver assessment domains.

Coaching Opportunities
(Townsend 2004, Carpenito-Moyet 2006)

    Ensure caregivers are aware of available community support systems.

    Encourage participation in appropriate relevant support groups.

    Encourage caregiver to express feelings

    Provide critical information to help the caregiver understand the illness of their family member.

    Encourage health-promotion activities.

    Discuss the possibility for respite to prevent social isolation.

Synthesis

    Being a family caregiver is involves balancing work, personal needs and care giving.

    Decreasing fragmentation of community supports is critical to supporting caregivers.

    Supporting caregivers is a critical part of community health.

    A holistic approach to patients AND their families is critical.

    An essential component is coordination between the educational system and NAMI.

Future Directions

    Increased illness and self care education for caregivers.

    Increased education of employers regarding caregivers and their needs.

    Increased coordination between employers and NAMI.

    Increased awareness with state and county government of caregiver needs.

    Increased respite and financial resources for caregivers

Summary

One of the greatest challenges of being a family caregiver is maintaining one’s own physical and emotional health while providing support at the workplace and at home. Utilizing a health promotion strategy that is easily attainable and applicable, such as “Powerful Tools for Caregivers” (caregiver@lhs.org )available through Legacy Health System, in conjunction with support in the community (NAMI), with development of public programs in the schools, provides continuity of care for parents and children. When caregiving parents have their needs met, they become the best advocates for their children and may become involved in the community to reduce the stigma against mental illness held in the community.

 
 
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Last modified: 05/24/08