Caregiver Stress & Rural America Flo Weierbach, RN MPH PhD Rural Health Association of Tennessee Annual Conference November 17, 2011

Purpose Identify the impact family caregiving has on the family caregiver Identify rural community resources that act as a facilitator or barrier for the family caregiver Discuss the health status of the family caregiver and how it may affect the elderly care recipient Discuss preliminary findings from Determinants of Health for Rural Caregivers Research Study

Family Caregivers Backbone of community providers Number of caregivers Provide 80% community based long term care Number of caregivers >18 yrs 43.5 million (care recipient >50 yrs) Who they are Daughters Cost to society 57% Employed (46% FT, 11% PT) 6 in 10 Caregivers work

Rural Elderly Who are they & What do they do? What do they need US 12.9%, Rural Elder: 28% (2.75 in 10) Veterans, farmers, truck drivers, still working, retirees (transplants) What do they need Access to services Caregiver impact & rural workplace Financial Percent of elderly: National: 2009=28%, 1990=14.74% Tennessee: 2009: > 65=13.1%, >85yrs=1.7% (15.7% adults > 65)

Rural Communities Elder Friendly Community Social & Civic Engagement Basic Needs Elder Friendly Community Independence for Frail & Disabled Physical & Mental Health Elder-Friendly Community Study focus: rural elder’s identified needs and their stories concerning how community resources met their identified needs.What is the communities contribution to health. Model based on practice-Feldman and Oberlink (2003) using focus groups identify four components necessary for an elder-friendly community. The model see Figure, identifies components that elderly have identified as necessary for them to live and thrive in a community. Urban, suburban, and rural elder groups identified variables in the four areas: address basic needs, promote social and civic engagement, optimize physical and mental health and well being, and maximize independence for frail and disabled. The variables under the four categories include: financial security, health and health care, social connections, housing and community based supportive services, such as assistance with housekeeping, yard work and other chore type activities, and transportation and safety identified under the four components can be characterized as formal and informal community resources. The elder-friendly model provides a structure to identify relationships between the four identified community components, community resources and the elder with ADL/IADL needs. (Elder-Friendly Community Model; Feldman & Oberlink, 2003)

Community Resources Basic Needs Social & Civic Engagement Housing (affordable, modifications) Safety Food acquisition Knowledge of community resources Social & Civic Engagement Connections to the community (Senior Centers, Ruritans) Church Neighbors Physical & Mental Health Comprehensive Health Care Independence for Frail & Disabled Age in Place Assistance with ADLs/IADLs Supportive services for Caregivers Transportation

Rural Resources Family: Kin Networks Churches: Social Networks Neighbors Civic Organizations: Ruritans Longevity & Connections

Caregiver Burden Objective Burden Stress Burden Relationship Burden Interferes with life Stress Burden Stress & anxiety Relationship Burden Strain in relationship Assistance with ADLS Problem Behaviors Intent to Institutionalize Self Rated Health

Elder Friendly Community Caregiver Stress What does stress look like for Rural Caregivers? Is stress the same for the Insider and Outsider? Community Elder Friendly Community Basic Needs Physical & Mental Health Independence for Frail & Disabled Social & Civic Engagement

Caregiver Stress

Caregiver Health Model Beyond Stress: Caregiver Health Model CG Needs CG Health Beliefs & Attitudes of CG Tasks Environment CG Health Promotion Behaviors

Caregiver Stress Beliefs & Attitudes Tasks Health Needs Health Promotion

Demographics N=13 Time providing care Caregiver gender 2/15.4% Male 9/69.2% Female 2/15.4% No response Time providing care 6/46.2% <1 year – 2 years 1/7.7% 6 years 1/7.7% 9 years 5/28.5% No response

ADLs/IADLs ADLs IADLs

CG Health Health: PROMIS: Global Health Domain19 Developed by NIH to provide a standardized clinical instrument to measure physical, mental & social health. Global health domain currently in phase 2 (clinical) testing: predictor of health care utilization & mortality

CG Health Promis Instrument

Beliefs & Attitudes of CG Attitudes and Beliefs: Kosloski’s Measure of Caregivers Beliefs & Attitudes 20 -Measures caregiver’s attitudes & beliefs about caregiving -Subscales include: family relationships, obligation to care, family values and religion. -Reliabilities ranged from 0.74-0.90 -Four factors were supported by a factor analysis providing preliminary validity evidence

CG Tasks Activities: Oberst’s Caregiving Burden Scale57   -Measures caregiving burden -Two subscales (caregiving difficulty with tasks and caregiving demands) -Coefficient alpha reliabilities ranged from 0.72-0.97. 58 -Factor analysis supported two factors, demand and difficulty.

CG Tasks Activities: Oberst’s Caregiving Burden Scale57   -Measures caregiving burden -Two subscales (caregiving difficulty with tasks and caregiving demands) -Coefficient alpha reliabilities ranged from 0.72-0.97. 58 -Factor analysis supported two factors, demand and difficulty.

Psychological Needs CG Needs Importance M / SD Satisfaction Deal with unpredictable future 6.33 / 1.16 3.83 / 1.64 Dealing with my fears 5.73 / 1.90 4.73 / 2.24 Be more patient and tolerant 6.25 / 1.77 3.67 / 2.43 Importance and Satisfaction scales range from 1 – 7. Higher score means more important/satisfied. Needs: Hileman’s Home Caregiver Need Survey22   -Measures the importance of caregiver’s needs -Six subscales: information, household, patient care, personal, spiritual and psychological -Cronbach ‘s alpha reliabilities ranged from .88-.96. 48 -Factor analysis supported the 6 factor structure and provides validity evidence of the measure.

Needs Involving Information CG Needs Needs Involving Information Importance M / SD Satisfaction Type and extent of illness 6.08 / 1.89 6.15 / 1.21 Cope with role changes 6.08 / 1.66 5.38 / 1.66 Importance and Satisfaction scales range from 1 – 7. Higher score means more important/satisfied. Needs: Hileman’s Home Caregiver Need Survey22   -Measures the importance of caregiver’s needs -Six subscales: information, household, patient care, personal, spiritual and psychological -Cronbach ‘s alpha reliabilities ranged from .88-.96. 48 -Factor analysis supported the 6 factor structure and provides validity evidence of the measure.

Personal Needs CG Needs Importance M / SD Satisfaction Time to rest 5.69 / 1.97 4.46 / 2.60 Maintain own health 5.92 / 1.80 4.46 / 2.03 Importance and Satisfaction scales range from 1 – 7. Higher score means more important/satisfied. Needs: Hileman’s Home Caregiver Need Survey22   -Measures the importance of caregiver’s needs -Six subscales: information, household, patient care, personal, spiritual and psychological -Cronbach ‘s alpha reliabilities ranged from .88-.96. 48 -Factor analysis supported the 6 factor structure and provides validity evidence of the measure.

CG Health Promotion Behaviors Walker’s Health Promoting Lifestyle Profile II HPLPII21 -Measures health promoting activities -Six subscales (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations and stress management). -Cronbach’s alpha for the total scale is 0.922

Acknowledgements Caregiver Participants American Nurses Foundation (ANF) East Tennessee State University Research Development Committee Center for Nursing Research

weierbach@etsu.edu (423) 439-4588 ???Questions??? weierbach@etsu.edu (423) 439-4588