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FSCD Study: Children (N=111)


Title: FSCD Study: Children (N=111) Author: barry trute Last modified by: Aimee Caster Created Date: 2/1/2004 8:51:20 PM Document presentation format – PowerPoint PPT presentation

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Title: FSCD Study: Children (N=111)

Family Supports for Children with Disabilities
Research Symposium Family-Centred Care in
Childhood Disability Services Understanding the
Steps in the Dance Barry Trute, PhD ARC
Professor of Family-Centred Care Social Work,
Nursing, Paediatrics University of
Calgary Edmonton (2005)
Presentation Objectives
  • Link the research findings of the Manitoba
    Studies (of families with young children with
    developmental and cognitive disabilities), with
    the conclusions of the Sobsey Calder review of
    family support research
  • Family research design issues
  • Family support knowledge
  • Provide research findings from the Manitoba
    Studies that
  • build on theoretical contributions and research
  • Dunst, Trivette et al. and
  • Rosenbaum, King, King et al.
  • Offer practical advice for the selection of
    process and outcome measures in the study of
    family-centred services

Shift in Service Orientation
  • Change in basics of relational and participatory
    components of practice (Dunst, 2002)
  • Move from professional paternalism to
    enablement, judgemental to supportive stances
    (Epps Jackson, 2000)

Shift in Service Assumptions
  • Assume normal families with special children
    unless proven otherwise
  • Assume family is the most vital ecological
    context for early child development
  • Assume parents are the experts on their
    children (and should be senior service planning
  • Assume professionals will go in and out of life
    of child while parents are the constants

Program Context Shapes Applied Research
Evaluation Design in Family-Centred Services
  • Child Service Setting
  • Health
  • Acute Care versus Chronic Care
  • Specialty Areas Developmental, Oncology,
  • Child Welfare
  • Neglect-Home Builders, Child Abuse-Family
  • Family Life Stage
  • Young child with autism spectrum diagnosis
  • Elementary school child with FASD
  • Adolescent with chronic bowel disorder
  • Middle-aged child with mother with dementia
  • Family Beliefs and Culture
  • Social Network Support
  • Trust versus Mistrust of Service Providers

The Manitoba Studies Families with Young
Children with Cognitive and Developmental
  • Survey of Strong Families (1986)
  • Paediatrician and social work independent (blind)
  • 36 families interviewed at home in rural and
    urban settings
  • separate interviews and data collection with
    mothers and fathers
  • Children with average age of 3 years
  • Longitudinal Family Tracking (1987, 1990, 1994)
  • 87 families when children were on average 5, 8
    12 years of age
  • In home interviews (2-3 hours in duration)
  • Separate interviews with mothers and fathers in
  • Re-implementation of family-centred care in
    Manitoba (2003, 2004) (SSHRC 828-1999-1037)
  • 111 families at 6 months after entry to childhood
    disability services (Time 1) and 12 months later
    (Time 2)
  • In home interviews with mothers and fathers in
    urban and rural communities
  • Children on average 4 yrs of age (with
    developmental cognitive disabilities)

Components Of Information Gathering Tracking FCS
Re-implementation Study (website
  • (1) Pilot Study of Families
  • (2) Reliability Family Cohort (Quantitative
  • (3) Longitudinal Family Survey (Quantitative
  • (4) Longitudinal Family Survey (Qualitative
  • (5) Family File Reviews in child disability
  • (6) Service Coordinator Quantitative and
    Qualitative Surveys
  • (7) Supervisor Focus Groups
  • (8) Key Informant Qualitative Interviews

Quantitative Service Measures Parent Perspective
  • Measure of the Processes of Care
  • (MPOC-20) (King, Rosenbaum et al. CanChild)
  • Family Centered Behavior Scale (Petr Allen
    Beach Center)
  • Professional And Parent Alliance Scale (PAPAS)
    (Trute Hiebert-Murphy)
  • Consumer Satisfaction Questionnaire
  • (CSQ-8) (Attkisson)
  • Family Needs Survey (Bailey et al.)

Quantitative Service Measures Professional
  • MPOC-SP (King et al.)
  • Self assessment for degree of family-centred
  • FOCUS (Bailey et al.)
  • Team or program areas degree of
    family-centered practice

Consumer Satisfaction in FCS
  • CS for ongoing service monitoring
  • Tailored to local hospital or program setting
  • Focus on family-centered service elements
  • CS as major dependent variable in FCS outcome
  • CSQ-8 (psychometric standard)
  • Replication with other FCS studies
  • (e.g., CanChild McMaster University)

Family-Centered Practice and Working
Alliance (PAPAS parent feels understood
respected, while having trust hope in service
provider) Dunst et al. Relational
elements Rosenbaum et al. Respectful and
supportive care
Items in the Professional and Parent Alliance
Scale (PAPAS Trute Hiebert-Murphy, 2005)
  • Scale Question When you think of the
    relationship you have with your (family worker,
  • Items are scored on the following five-point
    Likert scale
  • (1) Never, (2) Rarely, (3) Some of the time, (4)
    Most of the time, (5) All of the time
  • Example Items
  • I feel the worker respects me as a person
  • I feel annoyed with the worker
  • I feel the worker understands my needs and
  • Item 2 is scored in reverse

Research Issue Clarify Key Components of FCP
  • Is Family-Centred Practice essentially having a
    positive working alliance between professional
    and parent
  • (i.e., professionals having good relations with
  • Dunst, Trivette et al. hypothesis
  • FCP contains both relational and
    participatory practices

Mothers as Primary Evaluators of Family-Centred
Services in Manitoba Studies
  • Statistical analysis issue
  • Independence of mother/fathers scores when served
    by same service provider and in same family
    (fundamental assumption)
  • Sample size issue
  • More statistical power with larger sample (which
    is usually mothers, as fathers often defer to
    mothers greater contact with professionals and
    service knowledge)
  • Separate gender analyses highly informative
  • when have adequate samples of mothers and fathers

Predicting Mothers Consumer Satisfaction with
FCS - MPOC (N86)
  • Hierarchical regression (depCSQ-8)
  • Step 1 PAPAS
  • F(plt.001) t-papas(plt.001) r2.49
  • Step 2 PAPAS MPOC-20
  • F(plt.001) t-papas t-mpoc (plt.001)
  • R square change.07 with MPOC (plt.001)

Predicting Mothers Consumer Satisfaction with
FCS - FCBS (N86)
  • Hierarchical regression (depCSQ-8)
  • Step 1 PAPAS
  • F(plt.001) t-papas(plt.001) r2.49
  • Step 2 PAPAS FCBS
  • F(plt.001) t-papas t-mpoc (plt.001)
  • R square change.11 with FCBS (p.008)

FCC and Mothers Change in Self-Esteem Score
Hierarchical MLR (N81 depT2 RSE)
  • Step 1 T1 Self-Esteem
  • R2.61, F(1, 79)123.89, plt.001
  • Step 2 T1 Self-esteem (plt.001)
  • MPOC (p-ns)
  • Controls T2 Self-Esteem
  • For level of Self-Esteem at T1
  • Before testing predictor variable (MPOC)

Standardized Outcome Measures (with Normal
  • Mothers (Pearson Correlations)
  • FAM T1 T2 r(83).70
  • PSI T1 T2 r(72).79
  • Self-Esteem T1 T2 r(84).78
  • Mothers (Paired t-tests)
  • FAM
  • T1 M13.06 T2 M13.13 t(83)-.135, p-ns
  • PSI
  • T1 M86.50 T2 M87.38 t(72)-.474, p-ns
  • Self-Esteem
  • T1 M17.97 T2 M17.95 t(84)-.067, p-ns

(CASE MANAGEMENT) OUTCOMES in Childrens Services
From Perspective of Parents
  • 1. Family Resource Acquisition and Family Problem
  • 2. Improved Interpersonal Relations
  • (e.g., parent-child)
  • 3. Enhanced Family Environment
  • (Vital Developmental Context for Young Children)

Level 1 Resource Acquisition and Family Problem
Family Needs Survey (Bailey
Simeonsson, 1988)
  • Information (7 items)
  • Family Social Support (8 items)
  • Financial (6 items)
  • Explaining to Others (5 items)
  • Child Care (3 items)
  • Professional Support (3 items)
  • Community Services (3 items)
  • (items scored yes, not sure, no)

Three Factor Solution for FNS
  • Need for Information (9 items)
  • Need for Help with Resource Management (12 items)
  • Need for Facilitative Counseling (12 items)

FCS (MPOC) and Mothers Change in Family Resource
Needs Hierarchical MLR (N87 depT2 Level of
Resource Needs)
  • Step 1 T1 Level of Resource Needs
    (beta.576, t-plt.001)R2.33,
  • F(1, 85)42.30, plt.001
  • Step 2 T1 Level of Resource Needs
  • MPOC (beta-.193, t-p.03)
  • Fch(1, 84)4.96, p.03
  • R2.37
  • Note PAPAS in step-2 (instead of MPOC) not

F-C Practice Implications
  • Evidence suggests Working Alliance (WA)
    interwoven with Capacity Building (CB)
    Partnership-Enabling (CanChild) or
    Participatory Experiences (Dunst, Trivette et
  • We hypothesize that WA precedes CB in childhood
    disability services (must have WA to serve as a
    basis for CB, and must have skills for CB)
  • Alberta FSCD Act requires service plan (IFSP)
    which is a primary opportunity for CB
  • Social network and psychosocial supports vital to
    CB and are key assessment issues
  • First order of business in CB is information
    exchange, resource acquisition, and family
    problem solving
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