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

 Funding ◦ NIH/NINR, Grant # R15 NR  Research Team ◦ Kim Cox, PhD, ARNP ◦ Kerry Creasy, MSN, ARNP ◦ Crystal Martz, MSN, RN  Honors students  Association of Rehabilitation Nurses

 Stroke survivors w/ functional limitations rely heavily on family caregivers  ~3.5 million stroke family caregivers

 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

 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

SurvivorsCaregivers (CGs)  Age: 33 – 84Age: 23 – 82  Mean: 64Mean: 58  9 patients < 65  Admission FIM™ Range: 28-73

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), 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 RecoveryCrisis of Discharge

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), 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 RecoveryCrisis of Discharge

Commitment 1.Strength of caregiver/stroke survivor relationship 2.Caregiver’s willingness to perform care Capacity 1.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 Overall Impact of Stroke 1.Stroke as a crisis 2.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

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

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

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.”

Strategies for self-care  Existing self-care regimen ◦ Strategies to continue  Existing coping strategies Ability to sustain the caregiver role  Insight about l ong-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.”

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.”

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.”

 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

 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) 