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Stroke: Effects on the Individual, Family, and Society. Information was produced and/or compiled by the Alberta Provincial Stroke Strategy and written permission is required prior to reprinting any of the material located within this document. 08/07:08/08[R].

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Stroke effects on the individual family and society l.jpg

Stroke: Effects on the Individual, Family, and Society

Information was produced and/or compiled by the Alberta Provincial Stroke Strategy and written permission is required prior to reprinting any of the material located within this document.

08/07:08/08[R]


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On completion of this session, the participant will be able to:

Describe the effects of stroke on the individual, family, and society

Identify tools used in the assessment of depression and caregiver burden

Describe methods health care providers can use to improve stroke care

Learning Objectives


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Significant cause of mortality and morbidity worldwide

Wide variations in the effect of stroke on the individual, family, and society

Survivors require long-term, professional health care

Stroke


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“Life changes completely, your life is turned upside down. I wasn’t ready to retire. Everything switches off, and you have to start again.” (stroke survivor)

O’Connell, B., et al (2001). Recovery after stroke. Journal of Quality Clinical Practice, 21, 120-125.


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Changes:

in sense of self and bodily experience

in community integration

connectedness

availability of others

support from others

ability to contribute to community

ability to engage in intimate relations

Effects on the Individual


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Changes:

Self-image and self-esteem

Personality changes

Relationships with others

Sexuality

Effects on the Individual

Courtesy of the Calgary Health Region


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Stroke survivors may experience:

Diminished quality of life

Financial distress

Loss of independence

self care

decision making

Effects on the Individual


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Young survivors face limited age-appropriate respite care facilities.

“I went through a crying stage, and they said, ‘Don’t cry, there are plenty of people worse off than you.’ I was 44.” (stroke survivor)

O’Connell, B., et al (2001). Recovery after stroke. Journal of Quality Clinical Practice, 21, 120-125.

Effects on the Individual


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Some form of PSD in at least 1/4 of patients in the first year after acute stroke

A pooled estimate from 51 studies - 33% of survivors experience PSD

Greatest risk in the first few months after onset

Effects on the Individual-Post-Stroke Depression (PSD)


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Peak prevalence estimated between 6 mos and 2 years post stroke

Estimates vary depending on how PSD is diagnosed

May resolve spontaneously without therapy

Effects on the Individual-PSD


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Effects on the Individual-PSD

  • Risk factors:

    • Female sex, past history of depression or psychiatric illness, social isolation, functional impairment, and cognitive impairment

  • Relationship between stroke location and risk for depression undetermined


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Persistent sad, anxious, empty mood, feelings of hopelessness, pessimism, guilt, worthlessness, helplessness

Loss of interest or pleasure in activities, decreased energy, difficulty concentrating, remembering, making decisions

Insomnia, early-morning awakening or oversleeping

Thoughts of death/suicide, suicide attempts

Restlessness, irritability

Effects on the Individual-PSD


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“It’s like after a funeral, you get quite a bit of attention early on and then friends drop off, generally because they’re not perhaps understanding as to what’s going on or how to relate as well.”

O’Connell, B., et al (2001). Recovery after stroke. Journal of Quality Clinical Practice, 21, 120-125.


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Linked to worse functional outcomes, slower recovery, poor quality of life, and increased mortality

Strongest predictor of inpatient and outpatient medical services utilization

Effects on the Individual-PSD


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Assessment in stroke patient may be difficult

No universally accepted tool for assessment of PSD

Most tools not designed for people with cognitive or physical impairments

Effects on the Individual-PSD


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Effects on the Individual-PSD

Tools used in the assessment of depression:

  • Stroke Aphasia Depression Questionnaire (SADQ)

  • Geriatric Depression Scale (GDS)

  • Hospital Anxiety and Depression Scale (HADS)

  • Cornell Scale for Depression in Dementia

  • Beck Depression Inventory (BDI)

  • Brief Assessment Schedule Depression Cards (BASDEC)

  • Psychogeriatric Assessment Scale (PAS)


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Management:

Pharmacological

Electroconvulsive therapy (ECT)

Repetitive transcranial magnetic stimulation (RTMS)

Music therapy

Speech therapy

Cognitive Behavioural therapy

Effects on the Individual-PSD


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Conflicting evidence regarding effectiveness of early initiation of antidepressant therapy to prevent PSD

Routine use of antidepressants to prevent PSD is not recommended

Effects on the Individual-PSD


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Is depression a risk factor for stroke?

Effects on the Individual


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Emotionalism: pathological crying or laughing, emotional incontinence, emotional lability

Estimated at 1/4 of survivors in initial 6 months

Symptoms of emotionalism usually decline over time

May be mistaken for PSD

Effects on the Individual-Emotionalism


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Anxiety

Substance abuse

Effects on the Individual – Other Mental Health Diagnoses


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80% of stroke survivors return home after hospitalization

More than one million adults live with long-term impairments from stroke (US stats)

Family members provide most of the care

The cost of replacing family caregivers significant

Effects on the Family


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Changes to family dynamics often chaotic

No transition period

No opportunity to learn new skills and adjust

Chaotic period followed by period of re-organization

New sense of normal, finding balance

Effects on the Family


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Initial focus of caregivers - physical tasks of care

Shift of focus on behavior and interpersonal issues of survivor

Successes:

Survivor develops increased independence

Participating in activities together

Effects on the Family


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Fear of another stroke

Caregivers coping with exhaustion

Risk for social disconnect for survivor and caregiver

Marital strain, potential for breakdown

Effects on the Family


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“My husband was always very affectionate as in cuddling and he’d walk past and touch you on the head…all that’s gone. That’s just totally stopped…and that was fairly hard to cope with.” O’Connell, B., et al (2001). Recovery after stroke. Journal of Quality Clinical Practice, 21, 120-125.


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Spousal strain not directly proportional to degree of survivor’s disability

Partner of survivor with speech defects more likely to experience strain

Effects on the Family - Caregiver Burden


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Partner may have to leave work

Partner may have own health issues or develop new ones due to physical and emotional strain

Potential for financial distress

Effects on the Family


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Validated tools to assess for caregiver burden:

Care Giver Strain Index

Self Related Burden Index

Effects on the Family - Caregiver Burden


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Behavioral problems and depression may occur in children of stroke survivors

A changed family member returns home after a period of absence

Children experience changes to family routines

Effect on Family - Children


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Costs

Direct: value of goods and services in the treatment, care, and rehabilitation related to stroke

Indirect: value of years of life lost due to premature death and the value of activity days lost due to short or long term disability

Effects on Society


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Effects on Society

Courtesy of the Heart and Stroke Foundation of Canada


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Effects on Society

Courtesy of the Heart and Stroke Foundation of Canada


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Effects on Society

Courtesy of the Heart and Stroke Foundation of Canada


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Mortality rates and hospitalization rates have declined

Rate of hospitalization for stroke declined between 1994-95 and 2003-04

Rates are declining but the overall number of cases is high and is expected to increase due to the aging of the population

Effects on Society


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Stroke survivors have goals similar to those of any healthy individual: to live life fully and have quality of life.

Pearls of Wisdom


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Be an advocate for:

Early treatment

An organized approach to care

Funding for support groups

Respite facilities appropriate for young survivors

Pearls of Wisdom


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Provide support:

Emotional support

Instrumental support

Pearls of Wisdom


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Be a teacher:

Provide information and support to patients and families at “teachable moments”

Educate the public about misconceptions about stroke

Pearls of Wisdom


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Questions?


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Stroke: Effects on the Individual, Family, and Society

Prepared by

  • Gayle Thompson, RN(NP) MN

  • Education Project Manager

  • Alberta Provincial Stroke Strategy

  • July 2007

    Reviewers

    Carole White, RN PhD

    Faculty Associate, The University of Texas

    Health Sciences Centre at San Antonio

    San Antonio, Texas

    Teri Green, RN PhD

    Calgary Stroke Program/University of Calgary

    Calgary, Alberta

    Dalique van der Nest. O.T.

    Aspen Regional Rehabilitation Coordinator

    Slave Lake, Alberta


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