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Stroke: Effects on the Individual, Family, and Society

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

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  1. 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]

  2. 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

  3. 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

  4. “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.

  5. 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

  6. Changes: Self-image and self-esteem Personality changes Relationships with others Sexuality Effects on the Individual Courtesy of the Calgary Health Region

  7. Stroke survivors may experience: Diminished quality of life Financial distress Loss of independence self care decision making Effects on the Individual

  8. 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

  9. 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)

  10. 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

  11. 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

  12. 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

  13. “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.

  14. 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

  15. 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

  16. 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)

  17. Management: Pharmacological Electroconvulsive therapy (ECT) Repetitive transcranial magnetic stimulation (RTMS) Music therapy Speech therapy Cognitive Behavioural therapy Effects on the Individual-PSD

  18. 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

  19. Is depression a risk factor for stroke? Effects on the Individual

  20. 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

  21. Anxiety Substance abuse Effects on the Individual – Other Mental Health Diagnoses

  22. 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

  23. 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

  24. 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

  25. 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

  26. “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.

  27. 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

  28. 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

  29. Validated tools to assess for caregiver burden: Care Giver Strain Index Self Related Burden Index Effects on the Family - Caregiver Burden

  30. 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

  31. 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

  32. Effects on Society Courtesy of the Heart and Stroke Foundation of Canada

  33. Effects on Society Courtesy of the Heart and Stroke Foundation of Canada

  34. Effects on Society Courtesy of the Heart and Stroke Foundation of Canada

  35. 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

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

  37. Be an advocate for: Early treatment An organized approach to care Funding for support groups Respite facilities appropriate for young survivors Pearls of Wisdom

  38. Provide support: Emotional support Instrumental support Pearls of Wisdom

  39. Be a teacher: Provide information and support to patients and families at “teachable moments” Educate the public about misconceptions about stroke Pearls of Wisdom

  40. Questions?

  41. 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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