Peter Rosenbaum, MD, FRCP(C) Professor of Paediatrics, McMaster University,

1. Family-Centred Service: What is It, and Why Should I Care?Lessons from Families of Children with Disabilities Peter Rosenbaum, MD, FRCP(C) Professor of Paediatrics, McMaster University, Co-Director, CanChild Centre for Childhood Disability Research, Canada Research Chair in Childhood Disability

2. Objectives of Presentation • To define Family-centred Service (FCS) • To present a conceptual framework of FCS • To present research findings that link ‘process’ (FCS) with ‘outcome’ (parent well-being) • To discuss the wide implications of these findings for services to children with chronic difficulties and their families • To provoke discussion!

3. Who Are We? • CanChild is a health system-linked research unit - funded since 1989 by Research Branch of MOH of Ontario • CanChild pursues several research and knowledge translation programs • Colleagues in the work I shall report: Gillian King, PhD, Susanne King, MSc, (both social scientists), Mary Law, PhD, OT(R) • All work reported here is published in peer-reviewed journals and references can be provided

4. Context of Our Work:Our Assumptions • CanChild’s longstanding focus on FCS • Our interest in linking ‘process’ with ‘outcome’ - i.e., linking what is done with families to their perceptions of services and especially to their well-being (mental health, stress, satisfaction) • Working with all the CTCs in Ontario • We believe in the ‘non-categorical’ approach to childhood disability (Pless and Pinkerton, 1975)

5. Background Issues: I • Parents of children with long-term problems of health or development are at an increased risk of physical and mental health problems (Cadman et al. 1991; Brehaut et al. 2004; Raina et al 2004) • There is great variability in parental emotional well-being • The role of interpersonal aspects of service as a factor in parental well-being has not been well examined

6. Background Issues: II • Three interpersonal aspects of caregiving are important to recipients of health care:(a) Information exchange (b) Respectful supportive care (c) Partnership/enabling • Outcomes reported in the literature include:(i) Satisfaction with care and services(ii) Adherence to advice and Rx(iii) Stress(King et al., 1996)

7. Our Broad Research Focus Over the Past 15 Years... • To understand the extent to which medical services and therapies, provided in the context of long-term developmental and health problems, can reduce or add to parents’ stress and worry.

8. The Specific Research Question... • To what extent is there a relationship between the way parents experience caregiving, and their emotional well-being?or…(in plain English!) • Is “better” caregiving* associated with “better” outcomes in parents?*NB: “better” caregiving refers to services provided in a family-centred manner

9. 1: What Is Meant by FCS? • “…a set of new values, attitudes and approaches to service for children with special needs and their families. FCS recognizes that each family is unique; that the family is the constant in the child’s life; and that they are the experts on the child’s needs and abilities. The family works together with service providers to make informed decisions about the services and supports the child and family receive. In FCS, the strengths and needs of all family members are considered.” • See CanChild web page for MUCH more information!

10. 2a: What Do We Mean by FCS?A conceptual framework with 3 premises (i)Parents know their children best and want the best for their children…GUIDING PRINCIPLES: * Parental involvement in decision-making * Parents should have ultimate responsibility for the care of their children

11. 2b: What Do We Mean by FCS? (ii)Families are different and unique… GUIDING PRINCIPLE: * Each family and family member shouldbe treated with respect (as individuals)

12. 2c: What Do We Mean by FCS? (iii) Optimal child functioning occurs within a supportive family and community context. The child is affected by the stress and coping of other family members…GUIDING PRINCIPLES: * The needs of all family members should be considered * Involvement of all family members should be supported and encouraged

13. Does FCS Make a Difference? • No single study has assessed all of FCS • There is considerable support for most of the elements described in the CanChild model, but not all aspects have been studied equally* • It is important to study FCS longitudinally • Cost-benefit analyses of FCS remain to be done • Additional research will add strength to the case! *Rosenbaum et al., 1998

14. Conceptual Model of What Affects Family Well-being • Many factors can affect parental well-being • These include child, family, social, stressor and coping variables • No one has explored the role of caregiving as a mediator/moderator of parental well-being… i.e., whether (and how) FCS matters • The next slide illustrates the model we have tested.

15. Prognostic Indicators Disability Parameters Demographic Factors Professional Caregiving Caregiving Process Psycho-social Life Stressors Social-Ecological Factors Mediating Variables Interpersonal Factors Parent Emotional Well-being Outcomes Satisfaction with Care

16. Measuring Parental Perceptions of Services - Creating MPOC* • Developed with the input of hundreds of parents of kids with neurodevelopmental disabilities who identified 'components of care’ • Replicated with families with CF and DM • Field tested across Ontario with over 650 families • Multiple replications - CLP, PDD, ABI * King et al., 1996

17. Structure and Properties of MPOC • A 20-item, 5-factor measure • MPOC has good internal consistency and test-retest reliabilities (data available if requested) • Construct validation: MPOC scales are associated with higher satisfaction with services and lower stress in dealings with the services they receiveMPOC is a measure of FCS!

18. MPOC Scale Names • Enabling and Partnership • Providing General Information • Providing Specific Information about the Child • Co-ordinated and Comprehensive Care for Child and Family • Respectful and Supportive Care

19. Structure of MPOC • Seven-point response scale ranging from 1= ‘not at all’ to 7= ‘to a great extent’ • Each item begins with the same stem:“To what extent do the people who work with your child…” • Example: “…trust you as the ‘expert’ on your child?”

20. Evidence of MPOC Validity -1 Satisfaction Stress • Enabling/partnership .64 -.50 • Providing General Information .40 -.43 • Providing Specific Information .43 -.28 • Co-ordinated and Comprehensive Care .61 -.44 • Respectful and Supportive Care .52 -.43

21. Variations in MPOC Scores by Program Type – Validity 2

22. Evidence of MPOC Reliability Co-eff.  Retest • Enabling/partnership .95 .88 • Providing General Information .91 .77 • Providing Specific Information .81 .87 • Co-ordinated and Comprehensive Care .96 .80 • Respectful and Supportive Care .91 .87

23. 3: Linking ‘Process’ & ‘Outcome’: Cross-sectional Study…* • Data from 174 parents (80% of consenters) • Full data from 164 parents (103 mothers, 61fathers) of 109 children • Children were aged 3.0-5.11 years • All had a neurodevelopmental disability • Their functional abilities varied widely • All had attended a children’s specialty rehab. centre for at least the past six months* King et al., 1999

24. Outcomes of Interest... • Satisfaction with Care (Larsen et al.) • Parent emotional well-being:• Global Severity Index of the Symptom Checklist-90 (revised) (SCL-90-R)•Centre for Epidemiological Studies Depression Scale (CES-D) • Single-item stress question (5-pt response)

25. What Did We Find? • The next three slides show the same picture with different emphases…

26. SatCare Caregiving Stress ParWellBeing SocEcolog -.55 Coping .66 -.66 -.21 .23 .23 -.13 Disability .34 -.51 Burden -.17 .41 .60 Demogrphic -.50 ChldBehProbs

27. SocEcolog -.55 Coping SatCare .66 -.66 -.21 Caregiving Stress .23 .23 -.13 Disability .34 ParWellBeing -.51 Burden -.17 .41 .60 Demogrphic -.50 ChldBehProbs

28. SocEcolog -.55 Coping SatCare .66 -.66 -.21 Caregiving Stress .23 .23 -.13 Disability .34 ParWellBeing -.51 Burden -.17 .41 .60 Demogrphic -.50 ChldBehProbs

29. 4: Implications of This Work (i).Lives of Parents • Emotional well-being varies considerably… • Parents experience more distress and symptoms of depression than normative groups • Most, however, are not much different from the general population • Most parents are not heavily burdened by their child’s disability • Overall it appears that families of children with disabilities handle their life situation well

30. 4: Implications of This Work (ii). Predictors of Parent Outcomes • Three main relationships were highlighted by these findings:•Caregiving is important re. parental emotional well-being, satisfaction and stress•Child behaviour problems are a predictor of parental well-being - despite being relatively ‘mild’ in this population of 3-6 year olds •Social-ecological factors - family functioning and social support - predict parents’ well-being

31. 4: Implications of This Work (iii) General Clinical Relevance • Relative importance of psychosocial vs. demographic factors as predictors • Must consider the importance of psychosocial factors in determining parental well-being • Each significant predictor - care-giving, child behavioural problems, and social-ecological factors - is amenable to change! • Family-centred services take account of the needs of both children and their families.

32. Other FCS Research at CanChild • FCS-II survey* – 495 parents, 324 providers • Findings included replication of previous results • NB: ‘complexity’ of child’s needs  more services  more ‘sources’ of service (r=0.79)  less parental satisfaction! • Implications for how we should deliver services to families of children with complex problems* see www.fhs.mcmaster.ca/canchild

34. Other Parent-FocusedResearch at CanChild • Caregiver study – physical and mental health status of parents of 468 children with CP • Children vary by age and ‘severity’ of CP • Measures have been used in National surveys • Multi-variable model was used to look at child, individual, caregiving and family factors that influence outcomes

35. Part I: Descriptive Results – Social Support

36. Part I: Descriptive Results –Psychological Health(all p<0.001)

37. Part I: Descriptive Results –Physical Health(2 (3)= 250.6, p<.001)

38. Part I: Descriptive Results –Physical Health(All p<0.01)

39. Part I: Descriptive Results –Physical Health(All p<0.01)

40. Conclusions - 1 • This comprehensive set of constructs provides a reasonable explanation of factors affecting variability in both caregiver psychological health (R2 = 0.50) and variability in physical health (R2 = 0.50).

41. Background Child Character- istics Caregiver Strain Intrapsychic Factors Coping Factors *Outcomes*

42. Conclusions - 2 • Caregiving demand is directly and statistically significantly associated with both outcomes BUT the effect size is not substantial. • Child behaviour has a strong direct and indirect effect on psychological and physical health of caregivers

43. Background *Child Character- Istics* *Caregiver Strain* Intrapsychic Factors Coping Factors Outcomes

44. Future Research Directions... • Prospective inception cohort studies to examine and follow parental well-being longitudinally • Emphases could be on patterns of caregiving, and the perceptions thereof; on childhood behaviour; and on protective factors in families • Can we assess the cost-benefit of FCS approaches?

45. Now it is your turn… for DISCUSSION!