Assessment of Stroke Caregiver Readiness: A Primary Prevention Strategy

1. 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 College of Public Health & Health Professions

2. Acknowledgements • 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

3. Background • Stroke survivors w/ functional limitations rely heavily on family caregivers • ~3.5 million stroke family caregivers

4. 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

5. 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

6. Participants Survivors Caregivers (CGs) • Age: 33 – 84 Age: 23 – 82 • Mean: 64 Mean: 58 • 9 patients < 65 • Admission FIM™ Range: 28-73

7. Stroke Crisis Trajectory (condensed) Discharge Home*** Acute Care* Inpatient Rehabilitation** Stroke Survivors • Focus on “getting better” & • returning to pre-stroke life • Begin to realize long-term impact • on functional status • Limited memory • of this phase • Begin to plan for & • to try to anticipate • post-discharge needs • Become overwhelmed • with discharge • preparation • Realize enormity of the caregiver role • 24/7 responsibility • Feel alone / abandoned / isolated / • overwhelmed • Loss/change in future plans • Crisis mode • No preparation • Focus on recovery • Expecting return • to pre-stroke life Family Caregivers *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.

8. Stroke Crisis Trajectory (condensed) Discharge Home*** Acute Care* Inpatient Rehabilitation** Stroke Survivors • Focus on “getting better” & • returning to pre-stroke life • Begin to realize long-term impact • on functional status • Limited memory • of this phase • Begin to plan for & • to try to anticipate • post-discharge needs • Become overwhelmed • with discharge • preparation • Realize enormity of the caregiver role • 24/7 responsibility • Feel alone / abandoned / isolated / • overwhelmed • Loss/change in future plans • Crisis mode • No preparation • Focus on recovery • Expecting return • to pre-stroke life Family Caregivers *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.

9. CG Readiness Assessment 12 Domains Commitment • Strength of caregiver/stroke survivor relationship • Caregiver’s willingness to perform care Capacity • Existing health issues • Pre-stroke roles & responsibilities • Availability of informal support • Accessibility of the home environment • Financial resources • Pre-stroke caregiver experience • Strategies for self-care • Ability to sustain caregiver role Overall Impact of Stroke • Stroke as a crisis • Long-term meaning of stroke

10. 12 Domains – Commitment 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

11. 12 Domains – Capacity 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. 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

13. 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.”

14. 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.”

15. 12 Domains – Impact of Stroke 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.”

16. 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.”

17. Implications • 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

18. Current & Future Directions • 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

19. Barbara Lutz, PhD, RN, CRRN, APHN-BC, FAHA • Associate Professor • University of Florida • College of Nursing • (352) 273-6350 • bjlutz@ufl.edu