Real-world evaluations: The case of a respite program

The Many Faces of Childhood Well-Being: The Early Years (Two to Six)

Nov 30, 2007Edmonton

Dr. John D. McLennan, University of Calgary

Dr. Liana Urichuk, Capital Health & University of Alberta

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

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

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?

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

The Intervention

• Centre-based respite

• 6 hours/week

• “School-year”

• “therapeutic”– E.g., Social skills building

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

Baseline characteristics of participating children

• The children– n=63/82 (77%)– 2/3rd boys– 1/3rd Caucasians, 2/3rd 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

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

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