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Family Supports for Children with Disabilities Research Symposium

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).

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Family Supports for Children with Disabilities Research Symposium

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  1. 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)

  2. 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 of • 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

  3. 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)

  4. 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 partners) • Assume professionals will go in and out of life of child while parents are the constants

  5. Program Context Shapes Applied Research & Evaluation Design in Family-Centred Services Child Service Setting: Health Acute Care versus Chronic Care Specialty Areas: Developmental, Oncology, Psychiatry Child Welfare Neglect-Home Builders, Child Abuse-Family Preservation 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

  6. The Manitoba Studies: Families with Young Children with Cognitive and Developmental Disabilities • Survey of “Strong” Families (1986) • Paediatrician and social work independent (blind) nomination • 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 Winnipeg • 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)

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

  8. 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.)

  9. Quantitative Service Measures“Professional Perspective” • MPOC-SP (King et al.) • Self assessment for degree of “family-centred” practice • FOCUS (Bailey et al.) • Team or program area’s degree of “family-centered” practice

  10. 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 studies • CSQ-8 (psychometric standard) • Replication with other FCS studies • (e.g., CanChild: McMaster University)

  11. 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”

  12. 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, etc.)”: 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 priorities *Item 2 is scored in reverse

  13. 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 parents)? • Dunst, Trivette et al. hypothesis: • FCP contains both “relational” and “participatory” practices

  14. 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

  15. Predicting Mothers’ Consumer Satisfaction with FCS - MPOC (N=86) • Hierarchical regression (dep=CSQ-8) • Step 1: PAPAS • F(p<.001) t-papas(p<.001) r2=.49 • Step 2: PAPAS & MPOC-20 • F(p<.001) t-papas & t-mpoc (p<.001) • R square change=.07 with MPOC (p<.001)

  16. Predicting Mothers’ Consumer Satisfaction with FCS - FCBS (N=86) • Hierarchical regression (dep=CSQ-8) • Step 1: PAPAS • F(p<.001) t-papas(p<.001) r2=.49 • Step 2: PAPAS & FCBS • F(p<.001) t-papas & t-mpoc (p<.001) • R square change=.11 with FCBS (p=.008)

  17. FCC and Mothers’ Change in Self-Esteem Score:Hierarchical MLR (N=81; dep=T2 RSE) • Step 1: T1 Self-Esteem R2=.61, F(1, 79)=123.89, p<.001 • Step 2: T1 Self-esteem (p<.001) MPOC (p-ns) Controls T2 Self-Esteem For level of Self-Esteem at T1 Before testing predictor variable (MPOC)

  18. Standardized Outcome Measures (with “Normal” Families) • 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 M=13.06T2M=13.13 t(83)=-.135, p-ns • PSI • T1 M=86.50T2M=87.38 t(72)=-.474, p-ns • Self-Esteem • T1 M=17.97T2M=17.95 t(84)=-.067, p-ns

  19. Model of FCC: LEVELS OF SERVICE COORDINATION (CASE MANAGEMENT) OUTCOMES in Children’s Services From Perspective of Parents 1. Family Resource Acquisition and Family Problem Solving 2. Improved Interpersonal Relations (e.g., parent-child) 3. Enhanced Family Environment (Vital Developmental Context for Young Children)

  20. Level 1: Resource Acquisition and Family Problem Solving

  21. 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)

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

  23. FCS (MPOC) and Mothers’ Change in Family Resource Needs:Hierarchical MLR (N=87; dep=T2 Level of Resource Needs) • Step 1: T1 Level of Resource Needs (beta=.576, t-p<.001)R2=.33, F(1, 85)=42.30, p<.001 • Step 2: T1 Level of Resource Needs (beta=.578,t-p<.001) MPOC (beta=-.193, t-p=.03) Fch(1, 84)=4.96, p=.03 R2=.37 Note: PAPAS in step-2 (instead of MPOC) not significant

  24. F-C Practice Implications • Evidence suggests Working Alliance (WA) interwoven with Capacity Building (CB): “Partnership-Enabling” (CanChild) or “Participatory Experiences” (Dunst, Trivette et al.) • 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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