Assessment of Stroke Caregiver Readiness: A Primary Prevention Strategy
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Assessment of Stroke Caregiver Readiness: A Primary Prevention Strategy. Barbara Lutz, PhD, RN, CRRN, APHN-BC, FAHA. FNAP Associate Professor University of Florida College of Nursing. Mary Ellen Young, PhD Clinical Associate Professor University of Florida - PowerPoint PPT Presentation
Transcript of Assessment of Stroke Caregiver Readiness: A Primary Prevention Strategy
Barbara Lutz, PhD, RN, CRRN, APHN-BC, FAHA. FNAP Associate ProfessorUniversity of FloridaCollege of Nursing
Assessment of Stroke Caregiver
Readiness: A Primary Prevention
StrategyMary Ellen Young, PhDClinical Associate ProfessorUniversity of FloridaCollege of Public Health & Health Professions
Funding◦ NIH/NINR, Grant # R15 NR009800
Research Team◦ Kim Cox, PhD, ARNP◦ Kerry Creasy, MSN, ARNP◦ Crystal Martz, MSN, RN
Honors students Association of Rehabilitation Nurses
Acknowledgements
Stroke survivors w/ functional limitations rely heavily on family caregivers
~3.5 million stroke family caregivers
Background
Caregiving impacts ◦ Emotional Health
Increased depressive symptoms 40-70% w/ clinically significant symptoms 25-50% of these have major depressive symptoms
◦ Physical Health 60% report fair to poor health Less likely to engage in health prevention &
promotion activities
Need for Primary Prevention Strategies
Background
Methods Grounded Theory Study Focus:
◦ To understand needs of new stroke caregivers
2 semi-structured interviews◦ During rehab & within 6 months post-
discharge Sample
◦ 19 patients & 19 caregivers from 2 IRFs
Survivors Caregivers (CGs) Age: 33 – 84 Age: 23 – 82 Mean: 64 Mean: 58 9 patients < 65 Admission FIM™ Range: 28-73
Participants
Stroke Crisis Trajectory (condensed)
•Focus on “getting better” & returning to pre-stroke life
•Focus on recovery•Expecting return to pre-stroke life
Family Caregivers
Acute Care* Inpatient Rehabilitation**
•Limited memory of this phase
•Crisis mode•No preparation
*Average length of stay, U.S.: 4.9 days; Study Sample: 8 days; **Average length of stay, U.S.: 18 days; Study Sample: 23 days; ***Study Sample: through the first month post-discharge
Source: Lutz, B..J., Young, M.E., Cox, K., Martz,, C., & Creasy, K.R. (2011). The crisis of stroke: Experience of patients and their family caregivers. Topics in Stroke Rehabilitation 18(6), 786-797.
Discharge Home***
•Begin to plan for & to try to anticipate post-discharge needs•Become overwhelmed with discharge preparation
•Begin to realize long-term impact on functional status
•Realize enormity of the caregiver role•24/7 responsibility •Feel alone / abandoned / isolated / overwhelmed•Loss/change in future plans
Stroke Survivors
Stroke Crisis Expectations for Recovery Crisis of Discharge
Stroke Crisis Trajectory (condensed)
•Focus on “getting better” & returning to pre-stroke life
•Focus on recovery•Expecting return to pre-stroke life
Family Caregivers
Acute Care* Inpatient Rehabilitation**
•Limited memory of this phase
•Crisis mode•No preparation
*Average length of stay, U.S.: 4.9 days; Study Sample: 8 days; **Average length of stay, U.S.: 18 days; Study Sample: 23 days; ***Study Sample: through the first month post-discharge
Source: Lutz, B..J., Young, M.E., Cox, K., Martz,, C., & Creasy, K.R. (2011). The crisis of stroke: Experience of patients and their family caregivers. Topics in Stroke Rehabilitation 18(6), 786-797.
Discharge Home***
•Begin to plan for & to try to anticipate post-discharge needs•Become overwhelmed with discharge preparation
•Begin to realize long-term impact on functional status
•Realize enormity of the caregiver role•24/7 responsibility •Feel alone / abandoned / isolated / overwhelmed•Loss/change in future plans
Stroke Survivors
Stroke Crisis Expectations for Recovery Crisis of Discharge
Commitment1. Strength of caregiver/stroke
survivor relationship
2. Caregiver’s willingness to perform care
Capacity1. Existing health issues
2. Pre-stroke roles & responsibilities
3. Availability of informal support
4. Accessibility of the home environment
5. Financial resources
6. Pre-stroke caregiver experience
7. Strategies for self-care
8. Ability to sustain caregiver role
CG Readiness Assessment 12 Domains
Overall Impact of Stroke1. Stroke as a crisis2. Long-term meaning of stroke
Strength of caregiver/stroke survivor relationship Parallel vs. connected lives
◦ Communication styles within the relationship “Invisible” issues become visible
Caregiver’s willingness to perform care Intimacy concerns Comfort level with shift in roles Level of confidence in providing care Competing responsibilities
12 Domains – Commitment
Existing health problems Physical – e.g. cardiac issues, arthritis, disability/frailty,
previous back injury Mental – e.g. depression, anxiety, cognitive Conditions that affect strength, stamina, decision-
making
Pre-stroke roles & responsibilities Work Childcare & other dependents Household responsibilities
◦ Work load division
12 Domains – Capacity
Availability of informal support Friends, extended family, neighbors to:
◦ Assist upon arrival home◦ Run errands◦ Provide Transportation◦ Prepare meals◦ Provide respite
Accessibility of the home environment Needs to go beyond verbal description
◦ Several guidelines recommend an in-home assessment◦ Consider video or pictures of home environment
12 Domains – Capacity
Financial resources Financial reserves Insurance Other available benefits
Pre-stroke caregiver experience Professional health care experience Informal caregiving experience
“I didn’t have to figure out anything because we had taken care of her mother for 17 years with a stroke. I knew what we had to do.”
12 Domains – Capacity
Strategies for self-care Existing self-care regimen
◦ Strategies to continue Existing coping strategies
Ability to sustain the caregiver role Insight about long-term implications
◦ Long-term strategies to maintain CG role“It’s never going to end. He’s the same today as he was yesterday and the same tomorrow and the same next week. He just had his 69th birthday, this could be forever.”
12 Domains – Capacity
Stroke as a Crisis Crisis of the event
◦ Assess and acknowledge grief, loss, and sorrow Just beginning to recognize the impact
◦ Feel overwhelmed, isolated, alone
“Maybe mine was an overreaction…sitting huddled on the floor with the blanket wrapped around me, but you know people have moments of grief….Life has been ripped out from under him.”
12 Domains – Impact of Stroke
Long-term implications of stroke Expectations for recovery & implications for
future Adjusting to major life change
“You have to redesign your entire life. I mean, literally, life will never be the same.”
12 Domains – Impact of Stroke
Assess match b/t CG commitment & capacity & patient need, and
Develop interventions tailored to ◦ better prepare CG ◦ meet the dyads’ specific needs
Use anticipatory guidance Interventions
◦ Training CG to assist with ADLs / IADLs◦ Recommending home adaptations◦ Assisting CGs with planning / organizing / management strategies◦ Activating resources ◦ Implementing crisis management interventions / referral to family
counseling
Implications
Piloting◦ Guided CG assessment interview addressing
10 domains◦ Report findings to stroke team◦ Refining CG Readiness Model
Development of a CG Readiness Assessment Tool
Transitional Care Management Intervention
Current & Future Directions
Associate Professor University of Florida College of Nursing (352) 273-6350 [email protected]
Barbara Lutz, PhD, RN, CRRN, APHN-BC, FAHA
