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 Presentation1. To define Family-centred Service (FCS)2. To present a conceptual framework of

FCS3. To present research findings that link

‘process’ (FCS) with ‘outcome’ (parent well-being)

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 peer-reviewed journals and references can be provided

Context of Our Work:Our Assumptions

CanChild’s longstanding focus on FCSOur 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 OntarioWe believe in the ‘non-categorical’

approach to childhood disability (Pless and Pinkerton, 1975)

Background Issues: IParents 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: IIThree 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 shouldbe 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 FCSThere 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 longitudinallyCost-benefit analyses of FCS remain to be

doneAdditional 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-beingThese include child, family, social, stressor

and coping variablesNo 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.

PrognosticIndicators

DemographicFactors

DisabilityParameters

ProfessionalCaregiving

CaregivingProcess

MediatingVariables

Social-Ecological

Factors

Psycho-social LifeStressors

InterpersonalFactors

Outcomes Satisfactionwith Care

Parent EmotionalWell-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 DMField tested across Ontario with over

650 familiesMultiple replications - CLP, PDD, ABI

* King et al., 1996

Structure and Properties of MPOC

A 20-item, 5-factor measureMPOC 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 PartnershipProviding General Information Providing Specific Information

about the Child Co-ordinated and Comprehensive

Care for Child and FamilyRespectful 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

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

Satisfaction Stress

Variations in MPOC Scores by Program Type – Validity

2CLP

(N=104)

OACRS(N=430)

Non-OACRS(N=230)

p-value

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

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

Co-eff. Retest

3: Linking ‘Process’ & ‘Outcome’: Cross-sectional

Study…*

Data from 174 parents (80% of consenters)Full data from 164 parents (103 mothers,

61fathers) of 109 childrenChildren were aged 3.0-5.11 yearsAll had a neurodevelopmental disabilityTheir functional abilities varied widelyAll 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…

Disability

Coping

Burden

SocEcolog-.55

.66-.66

-.21

.23

-.51

-.13.23

.34

ChldBehProbs

Demogrphic

-.50

-.17

.60.41

Caregiving

SatCare

Stress

ParWellBeing

Disability

Coping

Burden

SocEcolog-.55

.66-.66

-.21

.23

-.51

-.13.23

.34

ChldBehProbs

Demogrphic

-.50

-.17

.60.41

Caregiving

SatCare

Stress

ParWellBeing

Disability

Coping

Burden

SocEcolog-.55

.66-.66

-.21

.23

-.51

-.13.23

.34

ChldBehProbs

Demogrphic

-.50

-.17

.60.41

Caregiving

SatCare

Stress

ParWellBeing

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

OutcomesThree 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 social-ecological 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

+0.44

Complexity of child’s health/ development

problem

Number of sources

of service FCS culture at centre/

organization

Parent beliefs about family-

centered servicesParent perceptions of family-centered

service

Parent satisfaction with service

F

B

D

C

A +0.42

+0.61

-0.07-0.13

+0.20

Factors Influencing Perceptions and Factors Influencing Perceptions and Satisfaction with ServiceSatisfaction with Service

(CanChild, 2003)

E

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 CPMeasures have been used in National

surveysMulti-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 20.9 (1.9) 11.3 (0.6)

3+ 32.7 (2.2) 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

Self Perception

R2=0.14

Social SupportR2=0.03

Stress Management

R2=0.15

Psychological HealthR2=0.50

Physical HealthR2=0.50

1=-0.18

2=-0.37

5=-0.18

3= -0.22

6=0.12

7=0.23

12=0.18

10=0.56

9=0.23

8=0.1811=0.29

13=0.27

16=0.33

14=0.11

15=0.33

4= -0.18

Child BehaviourR2=0.03

CaregivingDemands

Family FunctionR2=0.57

Background Child Character-

isticsCaregiver Strain

IntrapsychicFactors

Coping Factors

*Outcomes*

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

Self Perception

R2=0.14

Social SupportR2=0.03

Stress Management

R2=0.15

Psychological HealthR2=0.50

Physical HealthR2=0.50

1=-0.18

2=-0.37

5=-0.18

3= -0.22

6=0.12

7=0.23

12=0.18

10=0.56

9=0.23

8=0.1811=0.29

13=0.27

16=0.33

14=0.11

15=0.33

4= -0.18

Child BehaviourR2=0.03

CaregivingDemands

Family FunctionR2=0.57

Background *Child Character-

Istics**Caregiver Strain*

IntrapsychicFactors

Coping Factors

Outcomes

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!