Benzies et al., 2007 Screening for Family Needs The Many Faces of Childhood Well-Being: The Early Years (Two to Six) Edmonton, AB November 30, 2007

Situating Screening for Families Families are the primary caregivers and socializing agents for children Healthy families are required to support healthy child development All families have the potential to develop different risk and protective factors over their lifetime All families need support for their parenting, whether that is family-friendly workplace policy, information about parenting, or respite care for a child with a disability Screening for family needs occurs at different levels

Levels of Screening for Families Population-based screening –e.g., Parkyn, EPDS Vulnerable Families –e.g., Kempe Family Stress Checklist *Families of children with developmental delays or disabilities –e.g., Family Needs Survey, Parenting Morale Index

Children with Disabilities Between 12% and 16% of North American children have a developmental disability About 2% have a disability that requires lifelong care or special services Estimated $8.3 billion for lifetime costs for Canadian children with disabilities It is nearly impossible to estimate the costs to families

“Preventative therapy that helps families develop strong protective factors is more cost effective than aid for families already in crisis” (Patterson, J. 2002).

What is the problem? Families of children with disabilities have diverse needs for support and services Currently, it is difficult to identify which families will require intensive support, and those which will require minimal support to promote optimal development of their child –Face-to-face interviews are time-consuming or not possible –Current measures are rarely “family friendly” –Standardized tools are rarely used at intake assessments

…. a new study Triage Assessment for Families of Children with Disabilities Funded by: –Alberta Centre for Child Family and Community Research

Research Team Dr. Karen Benzies, UCalgary Dr. Barry Trute, UCalgary Dr. Catherine Worthington, UCalgary Dr. Melanie Moore, CHSRF Post-doc Dr. John Reddon, UAlberta –In collaboration with Family Support for Children with Disabilities, Alberta Children’s Services

Purpose of the Study To test a set of brief family screening measures that can help health and social service providers to identify families that may be at risk for high levels of parenting stress and family difficulties –The screening measures are intended to assist, not replace, the interview process between providers and caregivers of children with disabilities

Research Questions What combination and sequence of brief measures will caregivers find acceptable to assess their needs? From the perspective of caregivers, what are the gaps in the content? Are the measures reliable and valid for families in Alberta?

Designing a Measurement Study Closely examined many measures for: –Appropriateness for caregivers of children with disabilities –Reliability and validity –Number of questions –Family “friendliness” Based on ABCX Model, selected new, brief, “family-friendly” measures to compare against older, lengthy, “gold standard” measures

Theoretical Framework: Double ABCX Model X aA Pileup Stressors bB Existing & New Resources cC Perceptions of X+aA+bB Adaptation Bonadaptation Maladaptation (McCubbin & Patterson,1983) a b c Coping Time

Selected Measures *Parenting Morale Index (10) *Family Impact of Childhood Disability Scale (20) Family Support Scale (18) Family Needs Survey (35) Family Apgar (5) Personal Well-being Index (16) Positive & Negative Affect Scale (20) General Self-Efficacy Scale (10) Family Assessment Measure (14)

Progress To Date 233 caregivers of a child recently diagnosed with a disability completed a 45-minute telephone interview –Almost all agreed to be contacted for future research 56 caregivers completed a re-test reliability telephone interview Families come from all parts of Alberta Data cleaning and analysis under way

What have we learned so far? Families of children with disabilities are very committed to research that has the potential to help other families like theirs Families appreciate it when the researchers recognize the time they take to participate in research Most caregivers want a copy of the study results

Next Steps Complete quantitative data analyses Conduct qualitative interviews with ~ 25 caregivers to identify gaps in content, process If the triage assessment measures are reliable and valid for Alberta families, we will find out whether the measures can predict child and family outcomes 1 year later We need to test whether it makes a difference to complete the measures by telephone, on paper, or face-to-face.

Implications for Families Earlier identification of specific family needs for services More family-friendly approach to assessing needs for services Standardized approach to assessing needs for all families