Transcript Pediatric ABI: Does It Matter How We Treat The Family?

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
Objectives of Presentation
1. To define Family-centred Service (FCS)
2. To present a conceptual framework of FCS
3. To present research findings that link
‘process’ (FCS) with ‘outcome’ (parent wellbeing)
4. To discuss the wide implications of these
findings for services to children with chronic
difficulties and their families
5. To provoke discussion!
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 peerreviewed journals and references can be
provided
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)
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
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)
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.
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
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!
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
2b: What Do We Mean by FCS?
(ii) Families are different and
unique…
GUIDING PRINCIPLE:
* Each family and family member should
be treated with respect (as individuals)
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
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
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 wellbeing… i.e., whether (and how) FCS matters
 The next slide illustrates the model we have
tested.
Prognostic
Indicators
Caregiving
Process
Professional
Caregiving
Mediating
Variables
Outcomes
Disability
Parameters
Demographi
c
Factors
SocialEcological
Factors
Satisfaction
with Care
Psychosocial Life
Stressors
Interpersonal
Factors
Parent
Emotional
Well-being
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
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!
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
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?”
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
Variations in MPOC Scores
by Program Type – Validity 2
CLP
OACRS
Non-OACRS p-value
(N=104)
(N=430)
(N=230)
E&P
5.88
5.57
5.39
0.002
PGI
4.41
4.16
4.08
n.s.
PSI
5.15
5.20
5.14
n.s.
CCC
5.78
5.41
5.21
0.002
RSC
6.02
5.85
5.65
0.02
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
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
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)
What Did We Find?
 The next three slides show the
same picture with different
emphases…
SocEcolog
-.55
Coping
SatCare
-.66
-.21
Caregiving
Stress
.23
Disability
ParWellBeing
Burden
Demogrphic
-.50
.41
ChldBehProbs
.60
SocEcolog
-.55
Coping
SatCare
-.66
-.21
Caregiving
Stress
.23
Disability
ParWellBeing
Burden
Demogrphic
-.50
.41
ChldBehProbs
.60
SocEcolog
-.55
Coping
SatCare
-.66
-.21
Caregiving
Stress
.23
Disability
ParWellBeing
Burden
Demogrphic
-.50
.41
ChldBehProbs
.60
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
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
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 socialecological factors - is amenable to
change!
 Family-centred services take account of the
needs of both children and their families.
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
Other Parent-Focused
Research 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
Part I: Descriptive Results –
Social Support
Measure
CG
C
p
Social Support
(SS)
14.5
(3.4)
14.3
(2.7)
n.s.
Family Function
8.6
(5.6)
9.0
(4.9)
n.s.
Frequency of SS
Contacts
4.5
(0.7)
4.2
(0.9)
<0.001
Part I: Descriptive Results –
Psychological Health (all p<0.001)
Measure
CG
C
Distress
4.7 (4.4)
2.2 (2.7)
Chronicity of
Distress
5.5 (1.4)
5.2 (1.1)
Emotional
Problems % Yes
25.3 (2.0)
13.7 (0.5)
Cognition
Problems % Yes
38.8 (2.3)
14.3 (0.6)
Part I: Descriptive Results –
Physical Health (2 (3) = 250.6, p<.001)
Number of Chronic Conditions
CG
C
0
24.1 (2.0)
55.2 (1.0)
1
22.0 (1.9)
23.5 (0.9)
2
3+
20.9 (1.9)
32.7 (2.2)
11.3 (0.6)
10.1 (0.6)
Part I: Descriptive Results –
Physical Health (All p<0.01)
Chronic Condition
% Reporting ‘Yes’
CG
C
Allergies
35.1 (2.2)
19.9 (0.8)
Asthma
15.8 (1.7)
6.3 (0.5)
Arthritis/rheumatism
17.3 (1.8)
7.3 (0.5)
Back Problems
35.5 (2.2)
12.2 (0.7)
High Blood Pressure
7.1 (1.2)
4.1 (0.4)
Migraine headaches
24.2 (2.0)
11.2 (0.7)
Part I: Descriptive Results –
Physical Health (All p<0.01)
Chronic Condition
% Reporting ‘Yes’
CG
C
Sinusitis
13.5 (1.6)
5.0 (0.5)
Diabetes
3.0 (0.8)
1.1 (0.1)*
Heart Disease
2.8 (0.8)
0.8 (0.1)*
Cancer
2.1 (0.7)
0.5 (0.1)*
Ulcers
8.4 (1.3)
1.7 (0.3)
Physical pain
38.8 (2.3)
14.3(0.6)
Other
29.8 (2.1)
8.2 (0.6)
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).
Gross
Income
Background
1=-0.18
Caregiving
Demands
Caregiver Strain
Child Behaviour
R2=0.03
2=-0.37
Intrapsychic
Factors
Self
Perception
7=0.23
5=-0.18
R2=0.14
3= -0.22
8=0.18
11=0.29
10=0.56
Social
Support
R2=0.03
Coping Factors
Stress
Management
12=0.18
Family
Function
6=0.12
13=0.27
R2=0.15
R2=0.57
14=0.11
9=0.23
16=0.33
15=0.33
4= -0.18
*Outcomes*
Psychological
Health
Physical
Health
R2=0.50
R2=0.50
Child
Characteristics
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
Gross
Income
Background
1=-0.18
Caregiving
Demands
*Caregiver Strain*
Child Behaviour
R2=0.03
2=-0.37
Intrapsychic
Factors
Self
Perception
7=0.23
5=-0.18
R2=0.14
3= -0.22
8=0.18
11=0.29
10=0.56
Social
Support
R2=0.03
Coping Factors
Stress
Management
12=0.18
Family
Function
6=0.12
13=0.27
R2=0.15
R2=0.57
14=0.11
9=0.23
16=0.33
15=0.33
4= -0.18
Outcomes
Psychological
Health
Physical
Health
R2=0.50
R2=0.50
*Child
CharacterIstics*
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?
Now it is your
turn… for
DISCUSSION!