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Knowing what is important in Caregiver Supports

Outcomes Based Program Evaluation. Knowing what is important in Caregiver Supports. The Many Faces of Respite, Lifespan Respite Conference, Arizona, 2011. Presentation objective: To provide guidance on tips, tools and resources on evaluating a program that supports family caregivers

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Knowing what is important in Caregiver Supports

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  1. Outcomes Based Program Evaluation Knowing what is important in Caregiver Supports The Many Faces of Respite, Lifespan Respite Conference, Arizona, 2011

  2. Presentation objective: To provide guidance on tips, tools and resources on evaluating a program that supports family caregivers • Staff development and training • Designing program components • Developing an assessment tool • Determining what outcomes you want Introduction

  3. Information and Referral • Assessment • Development of “Well-Being Plan” • 1:1 Support • Connection to local resources, trainings and services • Individual consumer-directed budgets for respite care & other goods/services Program Components

  4. Assessment team • Program evaluator, Project manager, “Cathy” & Caregiver Specialists • What to collect • Validated tools • Collecting the data • Evaluating the data Assessment

  5. Measuring Outcomes

  6. Underlying Premise Measuring Outcomes

  7. Starting point • Research on Power Tools for Caregivers • Mary Mittleman Study -Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention • Review of other assessment tools – California, Utah, Massachusetts & NH • Caregivers Count Too! from the Family Caregiver Alliance (Section 3) • Input from Caregiver Specialists • Analysis of Program Components Measuring Outcomes

  8. Brainstorming • Identify outcome based on program components • Caregiver related - Depression, burden, coping, quality of life, stress strain, competence, caregiver reaction, caregiving effects • Care recipient related – Activities of daily living, cognition, functional limitations Measuring Outcomes

  9. Criteria for the final Cut • Psychometric properties • Reliability – test retest, inter-rater & Validity – construct, content • Cultural appropriateness • Length of the Instrument • Relevance of questions • Overall fit with other tools • ALDs & IADLs adopted from the NH state Medicaid Eligibility Determination (MEDs) Measuring Outcomes

  10. The Final Cut • Demographic information • Gender, marital status, income and assets, relationship to care recipient • Respite – currently available, needed • Zarit Burden Inventory • Patient Health Questionnaire (PHQ-9) • SF-12 Quality of Live • Revised Memory and Behavior Scale • Care recipient Characteristics • ADLs – NH Medicaid Eligibility Determination • Short Portable Mental Status Questionnaire Measuring OUtcomes

  11. Gender • Female – 294 (70.2%) • Age – 65.30 (SD 12.4) • Marital Status • Single – 32 (7.6%) • Married – 338 (80.7%) • Divorced/Widowed – 43 (5.3%) • Caregiver Employment status • Not Employed – 286 (68%) Preliminary Findings - Caregivers • Caregiver Race • White (Alone) Non Hispanic – 398 (95.0%) • Relationship to Caregiver • Spouse - 209 (49.9%) • Son/Daughter - 168 (40.1%) • Length of Time as Caregiver – 2 months-8.3 years

  12. Gender • Female 236 (56.3%) • Age – 80.98 (SD 8.3) • Marital Status • Married 242 (57.8%) • Divorced/Widowed – 161 (35.1%) • Living Status • With someone – 359 (86%) Preliminary Findings – Care recipient

  13. Preliminary Outcome

  14. Preliminary Findings - Caregiver Burden

  15. Outcome Measures – care recepient

  16. Preliminary Findings – Types of supports

  17. When compared to Spousal caregivers, adult children reported • Higher levels of burden • Slightly higher levels of Quality of Life • Higher levels of depression • Needing more instrumental support • Lesser emotional support Preliminary Findings – Adults vs. Spouse Caregiver

  18. This has… helped me step back and look at the whole picture… I am not so overwhelmed. I am able to meet friends occasionally – that I was never able to do before. Gave us a break so we could spend time together [husband and wife]… Provided homemaker and Med Alert. Thank God! Just having the time for myself. Weight lifted off my shoulders. Given me the ability to be a caregiver without the negative aspects associated with physical health. This program made me realize how much I need to ask for help. Video Interview - Sheila Caregiver Comments

  19. Kellogg Foundation’s Evaluation Handbook • http://www.wkkf.org/knowledge-center/resources/2010/W-K-Kellogg-Foundation-Evaluation-Handbook.aspx • Overview of Program evaluation http://extension.psu.edu/evaluation/category.html • Article on Evaluating Family Caregiver Programs A pilot evaluation of the Family Caregiver Support Program. Chen YM, Hedrick SC, Young HM. Evaluation and Program Planning. 2010 May;33(2):113-9. • Planning for Program Evaluation http://learningstore.uwex.edu/assets/pdfs/G3658-1.pdf • Developing a Logic Model http://www.uwex.edu/ces/pdande/evaluation/pdf/lmguidecomplete.pdf Evaluation Resources

  20. Family Caregiver Alliance, National Center on Caregiving, www.caregiver.org • National Consensus Report on Caregiver Assessment: Volume I, Principles, Guidelines and Strategies for Change (2006) • Volume I, Caregiver Assessment: Principles, Guidelines and Strategies for Change, http://www.caregiver.org/caregiver/jsp/content/pdfs/v1_consensus.pdf • Volume II, Caregiver Assessment: Voices and Views from the Field,  http://www.caregiver.org/caregiver/jsp/content/pdfs/v2_consensus.pdf • Caregivers Count Too! An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers, http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1695 • Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners (2002), http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2002_resource_inventory.pdf Evaluation Resources

  21. VidyaSundar, PhD. University of New Hampshire Vidya.Sundar@unh.edu • Cathy Creapaux NH Bureau of Elderly and Adult Services clcreapaux@dhhs.state.nh.us Thank You Contact Information

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