1. Real-world evaluations: The case of a respite program The Many Faces of Childhood Well-Being: The Early Years (Two to Six) Nov 30, 2007 Edmonton Dr. John D. McLennan, University of Calgary Dr. Liana Urichuk, Capital Health & University of Alberta

2. ACCFCR-funded study Title: The impact of therapeutic respite care on young children with special needs and their caregivers Partners: –Kids Kottage (Lori Reiter) –Elves Special Needs Society

3. Acknowledgements ACCFCR McDaniel Foundation Minerva Foundation Personnel funding (McLennan) –AHFMR –CIHR Research Staff & Students –Kristen Welker, CASA –Maddalena Genovese, CASA –Jenna Doig, University of Toronto –Susan Huculak, University of Calgary

4. Respite What is respite? –A group of support services designed to provide “the feeling of a break” from the habitual demands of caring for a dependent who has a disability (Neufeld et al., 2001, Cohen 1982, Warren & Cohen, 1985) Why would you need to evaluate it?

5. Real-world evaluation Determine if our intervention efforts are effective Potential impact of intervention efforts: –(i) More harm than good –(ii) Ineffective No effect Opportunity cost –(iii) Effective Can’t make assumptions from efficacious studies Priorities for expansion/dissemination

6. The Intervention Centre-based respite 6 hours/week “School-year” “therapeutic” –E.g., Social skills building

7. Study design Pre-post design quantitative study –Baseline information –Mid-point (5 months) –End-point (10 months) –Follow-up (18 months) Quasi-experimental design component –Respite seeking comparison group Qualitative inquiry component

8. Baseline characteristics of participating children The children –n=63/82 (77%) –2/3 rd boys –1/3 rd Caucasians, 2/3 rd Minorities –2-1/2 to 9 years of age (mean: 5 years) –1/3rd “confirmed FASD” –Strengths & Difficulty Questionnaire 89% rated their child’s difficulties in the high (“abnormal”) range 92% indicate these difficulties have a substantial impact on the child’s life and environment

9. Baseline characteristics of participating caregivers Caregivers (n=50) –76% mothers (39% biological) –24% fathers (33% biological) –Parent Stress Index (SF) 2/3rds scored in the high range on total stress measure

10. Anticipated outcomes Fall 2008 – preliminary outcome data Understanding of the impact of this type of respite program –A preliminary understanding –Possible benchmark –Clues to what direction to take to improve the respite intervention Contribute to a continuous quality improvement loop