Family-Centred Service:

A Conceptual Framework
and Research Review
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Peter Rosenbaurn
Susanne King
Mary Law
Gillian King
Jan Evans

SUMMARY. Family-centred service (FCS) is a popular phrase wide-

ly used to encompass a set of ideas about service delivery to children
and their families. Despite the increasing adoption of the concepts of
For personal use only.

FCS, however, many clinicians may remain uncertain about exactly

what FCS means. This review article has four purposes. The first
section presents a brief review of the history and ideas behind FCS.
Second, the authors present a new framework of FCS, blending the
elements of this approach into a set of ideas that have immediate
clinical applicability. The third focus of this paper is to review the

Peter Rosenbaum, MD, FRCP(C), is Developmental Pediatrician, Neurodevelop-

mental Clinical Research Unit (NCRU) Investigator, and Professor, Department of
Pediatrics, McMaster University, Hamilton, ON. Susanne King, MSc, is Research
Coordinator, NCRU. Mary Law, PhD, OT(C), is Director, NCRU, Associate Profes-
sor, School of Rehabilitation Science, McMaster University, Hamilton, and an oc-
cupational therapist. Gillian King, PhD, is NCRU Investigator, McMaster University,
Hamilton, and Research Director, Thames Valley Children’s Centre (TVCC), Lon-
don, ON. Jan Evans, MSc, is Physical Therapist, School Age and Adolescent Ser-
vices Program, TVCC.
Address correspondence to: Peter Rosenbaum, NCRU, McMaster University,
Faculty of Health Sciences, T-16, Room 126, 1280 Main Street West, Hamilton,
ON, Canada L8S 4K1.
[Haworth co-indexing entry note]: “FamilyCentred Service: A Conceptual Framework and Research
Review.” Rosenhaum, Peter et al. Co-published simultaneously in Pltyvicol & Occuporiortol Theropy iii
Pediofrks (The Haworth Press, Inc.) Val. 18, No. I , 1998, pp. 1-20; and I;hnri(y-Cerfrrednssessriterrlond
hfretvenfion irr l’ediriric Rehnhilirotion (ed: Mary Law) The tiaworth Press, Inc., 1998, pp. 1-20. Single
or multiple copies of this anicle are available for a fee from The Hawoi?h Document Delivery Service
[ I-8OO-342-9678, 9:OO a.m. - 5:OO p.m. (EST). E-mail address: getinfo@haworthpressinc.com].

0 1998 by The Haworth Press, Inc. All rights reserved. I

 2 Fnrtiily-Centred Assesstnetit atid Interveritioti in Pediatric Reliabilifotion

research evidence that supports FCS and to point to areas where fur-
ther research is needed. Finally we consider the implications for ser-
vice providers of the move to FCS, and the potential uses of the FCS
framework as a guide for teaching and research. [Article copies avuil-
ablefor a feeft’om The Ha~t’ot?hDocirnierit Delivery Service: 1-800-342-9678.
E-mail address: g e ~ i t ~ o ~ h ~ w o r t ~ i ~ ~ r ~ s s i n c . c o ~ i ]
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INTRODUCTION

Jeremjj is a bright four-year-old boy with dystonic cerebral palsy who

communicates by making guttural noises but has no speech. He has had
more than two years of speech therapy at the local treatment centre. His
parents have been advised b-v the treatment centre staff that a program of
sign language would be beneficial, because it would enable Jeremy to put
his ideas across, albeit in an alternative mode of communication. His
grandparents are very nzuch against this approach, believing that fi this is
done Jeremy will be stigmatized and never learn to talk. Because the
grandparents care f o r Jeremy after daycare, and sometimes on weekends
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while his parents work, Jeremy S parents are reluctant to go against their
wishes. The parents come to discuss this dilemma with you.
This scenario could be reproduced in many variations to reflect contem-
porary issues in the delivery of child health services. Situations like these
are indicative of an increasing expectation on the part of parents to be
involved in and control decision-making in matters that concern them-
selves and their children. No longer can health professionals simply pre-
scribe to parents in a top-down paternalistic model of care, with the beliefs
that parents want to be told what to do and that they will actually do it.
Equally it is no longer possible to disregard the wishes and hopes of
parents about the things that are done for their children.
How should service providers respond to this expectation for parent
involvement and control in issues of child health, especially in the context
of chronic care? What models of service delivery are appropriate for these
changing times, and what are the implications of these models for clinical
practice? To a large extent the answers to questions like these lie in an
understanding and adoption of the concepts subsumed under the broad
umbrella of “Family-Centred Service.”
The purpose of this article is to describe a fiamework of family-centred
service (FCS) that addresses these issues. Building on elements of FCS
that can be found in the literature, we set out to accomplish four goals: (a) to
review briefly the history and ideas behind FCS; (b) to blend the elements
of FCS into a conceptual framework; (c) to review research evidence that
 Roseribcriini et al. 3

supports aspects of the framework (and points out gaps in our understand-
ing and information); and (d) to consider the implications of FCS for
service providers, addressing expectations concerning our attitudes and
behaviours implicit in the contemporary practice of FCS.

BACKGROUND AND HISTORY OF FAMILKCENTRED SERVICE

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The nature of services to children with disabilities, and of the parent-

professional relationship, has changed dramatically over the past 50
years.’ During the first half of this century parents were viewed as incapa-
ble of raising their children with disabilities and thus institutional place-
ment was recommended. In the 1940s and 1950s parents began to band
together into advocacy groups. This began a slow evolution and shift away
from professionals controlling the destiny of children with special needs to
parents controlling the process in partnership with professionals. Many
widespread social and political influences have converged to bring about
these changes, of which the primary forces came from legislation, parental
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advocacy and current views of “best practice.”2

Ideas about “client-centred’’ or “family-centred” practice originated in
the 1940s with Carl Rogers’ approach to working with families of problem
~ h i l d r e n .In~ the mid-1960s the Association for the Care of Children in
Hospital (ACCH-now the Association for the Care of Children’s Health)
was founded and began to provide ideas about family-centred care. In the
intervening 30 years, inany organizations and authors have proposed con-
cepts and discussed ways in which care and services should be offered to
families of children with special health needs. To a great extent this litera-
ture is characterized by wisdom and insight, and is generally helpful in
presenting the concepts behind the shift from authoritarian to partnership
practice.
Intervention for children with chronic health problem or developmen-
tal disabilities has typically been child-centred with doctors and therapists
setting goals which focus 011 bringing about changes in the child. The
medical model of intervention views the health professional as the expert.
The professional is able to assess the problems, recommend interventions,
and provide or co-ordinate treatment. Over the past ten years the role of
the family in the child’s life has received increased recognition. Both
research and parent advocacy have led health care professionals to a real-
ization that parents have tremendous insights into their child’s abilities and
are valuable resources in their lives. Family systems theory emphasizes
the interactions of various inembers of the fainily and the impact of each
member upon ail the others. This theory also proposes that when family
 4 Fmnily-Ceritred Assessinen1 arid Iritervetziion it2 Pediicilric Rehabilitntioti

members are physically and psychologically healthy they are more capa-
ble of facilitating their child’s d e ~ e l o p m e n tThis
. ~ has led to the view that
interventions can affect children indirectly by influencing other compo-
nents of the family system.
The efforts of parent advocacy groups stimulated legislative changes in
the United States that led to the enactment of the Education of All Handi-
capped Children Act in 1975, requiring parental involvement in decision-
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making about services for their children. Public Law 94- 142 also mandated
that parents be involved in setting goals and planning services for their
children, which led to the development of an individual education plan.
Over the years parents have become knowledgeable consuiners and
now speak out actively about the types of services they require and how
they want to be involved in the process of defining these service^.^ The
research and personal experiences of parents such as the Turnbulls6 have
helped to sensitize service providers to the complexities of living with a
child with a disability, and the needs of all the family members. Legislative
revisions have been made to reflect these concerns, for example with
PL 99-457 enacted in 1986, requiring that the total family be the recipients
of services, and that the family members decide how they want to be
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involved in the decision-making process concerning goals and services for

their child. Despite a growing body of literature outlining the processes of
service provision, what has been less evident is a conceptual framework
within which to place the many important ideas that flow from a belief in
“family-centred” service.

CONCEPTUAL FRAME WORK FOR FAMILY-CENTRED SERVICE

The Neurodevelopmental Clinical Research Unit (NCRU) at McMaster

University is a multidisciplinary clinical research group working in part-
nership with all 19 of Ontario children’s rehabilitation centres. In response
to requests from our partner agencies to help conceptualize, teach and
implement FCS, we reviewed the existing descriptive and research litera-
tures on FCS (see Appendix A for a bibliography of this descriptive
literature). We have attempted to distil the wisdom from this literature into
a conceptual framework directed particularly to service providers and
supported wherever possible by research evidence. (In addition we have
undertaken studies to assess the degree of family-centredness of our partner
agencies, as perceived both by parents and by professionals, the results of
which are presented e l ~ e w h e r e . ~ )
Family-centred service has been well defined by the National Center
for Family-Centered Care as follows:
 Rosenbatrm et al. 5

Family-centered service is the name that has been given to a constel-

lation of new philosophies, attitudes, and approaches to care for
children with special health service nceds. At the very heart of fami-
ly-centered service is the recognition that the family is the constant
in a child’s life. For this reason, family-centered service is built on
partnerships between parents and professionals.* (We have altered
the quotation from family-centered care to family-ccntered service.)
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I n practical terms, what does this statement mean, and more specifical-
ly, what are the implications for service providers? The NCRU’s ideas
about FCS (Table 1) are built upon a three-level framework that attempts
to incorporate current ideas about FCS, and to offer both parent and
professional perspectives on the issues. First, and central to the frame-
work, are three basic premises or assumptions, consistently articulated in
the literature as the backbone of FCS. Each assumption is followed by a
small number of guiding principles or “should” statements, directed to
service providers as the foundation upon which our interactions with fami-
lies should be grounded. These are the logical consequences of each basic
assumption. Note that the premises in this approach focus primarily on the
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family, while the guiding principles begin to describe the climate within
which the parent-professional interaction “should” take place.
The third component of the framework, and what distinguishes this
approach from many other conceptualizations of FCS? is a series of
“elements”-key service provider behaviours-that follow from the as-
sumptions about families and the guiding principles with which they are
associated. Note that these elements are all found in the literature and are
not the creation of the present authors. We have simply tried to collect
together those aspects of the philosophy and practice of FCS as they
concern service providers, in a manner complementary to the parent-fo-
cused dimensions of the FCS model, and to make FCS more accessible
and practicable to service providers. We also believe that an approach like
this one makes it possible to identify how to both teach and measure FCS
in practice.
The first basic premise of this model of FCS is that “Parents know their
children best and want the best for their children.” For service providers
this means encouraging parental decision-making based upon appropriate-
ly presented information, in the context of clearly defined child and family
needs, and built upon child and family strengths. The milieu in which such
care and services are offered must be a collaborative partnership, with
service providers as technical experts with knowledge and perspectives on
the condition and treatments, and parents as experts on their child, their
family, and their strengths, needs and values. Services should be offered in
an accessible manner, both with respect to the location of the services and
 TABLE 1. Premises, Principles, and Elements of Family-Centred Service
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Premises(basic assumptions)
Parents know their children best and want the best for their Families are different and unique. Optimal child functioning occurs within a
children. supportive family and community context: The
child is affected by the stress and coping of other
family members.

Guiding Principles (“shouldstatements)

Each family should have the opportunity to decide the level Each family and family member should be * The needs of all family members should be
of involvement they wish in decision-making for their child. treated with respect (as individuals). considered.

Parents should have ultimate responsibility for the care of The involvement of all family members should be
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their children. supported and encouraged.

EIements (key service provider behaviours)

Service Provider Behaviours Service Provider Behaviours Service Provider Behaviours
to encourage parent decision-making to respect families to consider psychosocial needs of all members

to assist in identifying strengths to support families to encourage participation of all members

* to provide information to listen to respect coping styles

to assist in identifying needs to provide individualized service to encourage use of community supports

to collaborate with parents to accept diversity to build on strengths

* to provide accessible services to believe and trust parents

* to share information about the child to communicate clearly

 Rosenbaiini et al. 7

in a style that respects each family’s abilities to understand and absorb

information and advice. Obviously counselling must be based upon a clear
and shared understanding of each child’s situation.
The second premise of the NCRU framework posits that “Families are
different and unique,” and argues for the individualization of our services
for each family and its members. The immediate implications for service
providers include the need to recognize and accept the diversity of parental
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values and cultures found within our multi-ethnic communities. This prem-
ise demands that wherever possible we tailor our communications-both
the facts and the examples we use-to be consistent with the individual
understanding and needs of the families with whom we work. To identify
parents as “typical” of this or that is not appropriate. Rather, we must
strive to understand their predicaments in their terms, and advise them in
their “language.” Other fundamental elements of this approach include
the ability to listen carefully to what parents are saying and to trust their
observations about their child.
Pediatrics can be considered as a specialized form of family practice,
because the ecological context of children is their family, within their
community. The third premise of the FCS framework presented here re-
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flects this reality of childhood, and states “Optimal child functioning

occurs within a supportive family and community context: the child is
affected by the stress and coping of other family members.” If services for
children with special health or developmental problems are to be family-
centred, the needs and involvement of all family members should be
encouraged and supported.
For service providers trained at, and practicing within, specialized hos-
pital-based programs, this third notion of FCS may pose particular chal-
lenges. The need here is to look outward-toward the child’s family and its
needs; toward the involvement of family members (for example, grandpar-
ents) in the care of the child; to the use of community services and sup-
ports as valuable contributors to child and family well-being. This premise
also challenges service providers to recognize and build upon each fami-
ly’s strengths, in the context of their individual coping styles, without
judgments about those adaptations.

RESEARCH EVIDENCE IN SUPPORT

OF FAMILFCENTRED SERVICE
Any innovative treatment, intervention, or service delivery model re-
quires both a theoretical and a scientific basis. Much has been written and
discussed about the meaning of family-centred service and its purported
benefits, which for many people intuitively have credibility. Prior to im-
 8 Fuiiiily-Ceiittud Assessirieiit niid Ititeiwirtioii iii Pedintric Rehubilitntioir

plementing changes in clinical and administrative practices, however, con-

sidering whether any research evidence supports the effectiveness of fami-
ly-centred service is essential.
Literature Review. The first step in preparing to conduct a literature
search on this topic was to clarify what kind of impact or effect to ex-
amine. If one assumes that the purpose of working with families who have
a child with a disability is to enhance the quality of life for that child and
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the family,’O then the outcomes of interest for a family-centred framework

should focus on more than the child’s physical, emotional, social, and
cognitive functioning. Within the ecological context of the child’s devel-
opment,’ outcomes related to parents, siblings, the family unit, parent-
child interactions, parent-professional relationships, health care providers,
and the community would also have relevance in demonstrating the bene-
fits of family-centred service. 12-15
The literature search examined multiple databases (Medline, PsychInfo,
Cumulative Index to Nursing and Allied Health Literature (CINAHL),
and Health Planning and Administration). The inconsistencies of terniinol-
ogy limited the search to several synonyms of “family- or patient- or
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client-centred” but individual features of a family-centred approach were

not specifically searched for at this time. Few studies addressed the effec-
tiveness of family-centred service in pediatric populations.
Organization and Presentation of Research Studies. The studies that
were examined for evidence of the effectiveness of family-centred service
were classified by the type of research design used. Four such classes are
identified.16 Class 4 evidence is the weakest and refers to descriptive and
case studies and expert opinion. Cross-sectional and case-control studies
provide Class 3 evidence. Class 2 evidence is derived from non-random-
ized Controlled trials and before-after studies where subjects act as their
own controls but no other control group exists. Class 1 evidence is ob-
tained from randomized controlled trials and is the most powerful method
available for evaluating effectiveness because of its features of a concur-
rent control group, random allocation of subjects by the investigator, bal-
ance of known and unknown confounders, and prospective data collection.
Space permits only discussion of Class 1 evidence; however studies in
Classes 2-417-27are referenced in Tables 2 and 3, summarizing how all the
available studies relate to the FCS framework.
Five Class 1 studies were found in the pediatric literature that are
noteworthy. Moxley-Haegert and Serbin28 randomly assigned 39 parents
to one of three groups in a study to assess whether teaching parents to
recognize developmental gains in their delayed infants would increase
parents’ participation in a home treatment program and thus enhance their
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TABLE 2. Notation of References to Research Evidence Supporting the Effectiveness of Family-Centred Service
Elements

Jremises(basic assumptions)
Parents know their children best and want the best for their Families are different and unique. Optimal child functioning occurs within a supportive
children. family and community context: The child is affected
by the stress and coping of other family members.

Suiding Prmcipks(“should” statements)

Each family should have the opportunity to decide the level Each family and family member should be The needs of all family members should be
of involvement they wish in decision-makingfor their child. treated with respect (as individuals). considered.
For personal use only.

Parents should have ultimate responsibility for the care of The involvement of all family members should be
their children. supported and encouraged.

Elements(key service provider behaviours)

Service Provider Behaviours Service Provider Behaviours Service Provider Behaviours
to encourage parent d e c i s i ~ n - m a k i n g ~ ~ ~ ~ ~ , ~ ~ , ~to~ respect famiiies21.23.24.26 to consider psychosocial needs of all member^^^,^^,^^

to assist in identifying strengths17,18,25,26,2&31 to support familiesi7 to encourage participation of all members26

rn to provide to respect coping styles

to assist in identifying need^^^,^^,^^,^^,^^,^^ 10 provide individualized setvice25~z6~z8-3i to encourage use of community supports

* to collaborate with parents17v18125,26 to accept diversityz5 to build on strengths

0 to provide accessible s e l ~ i c e s ~ ~ ~ ~ 10 believe and trust parents

to share information about the childz0,28~29~31 10communicate clearly

 4
TABLE 3.Research Evidence on Family-CentredService: Summary of Outcome Measures Used in These Studies
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s
CLASS4 EVIDENCE CLASS 3 EVIDENCE CLASS 2 EVIDENCE I CLASS 1 EVIDENCE
. Dunst et aL2' -3. Dunst et aI2O I. Marcenko & Smith24 1. Moxley-Haegert & Serbin2*
sense of control self-efficacy access to services child skills
maternal life satisfaction motor developmental gains ,
._Brinker et aI.@ parents' knowledge acquisition
stress !. Car0 & Dere~ensky'~ parents' participation in home
rate of infants' developmental treatment program
I. Korsch et aL2* gains parents' ability to discriminate 8
satisfaction families' functional skills report gains
satisfaction
Lewis et a123 child targeted goals 2. Parker et at.29
distress reduction family members' goals mental & motor developmental
'. Miller et aIz5
psychological distress
- gains
child temperament
home environment
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I. Street26 3. Davis & GettingeGO

satisfaction parents' preferences about
assessment method
I. Wasserman et a127 0 nature & amount of information
satisfaction from assessment
decrease in concerns parents' evaluation of
opinions about clinician assessment experience
4. Stein & J e s s 0 p ~ ~ 1 3 ~
satisfaction with care
child psychologicaladjustment
mother's psychiatric symptoms
impact on family
child functional status
* follow-up study on child's
psychological adjustment
15. PY et a134
child behaviour problems
child's psychosocial adjustmen
child's self-worth
 Roseribairin et rtl. II

child’s development. The developmental education (DE) group, which

received a brief course on child development from an educator who visited
the home, was compared to a group receiving parent education in child
management, and to a no-education control group. The authors reported
several positive parent outcomes for the DE group in comparison with the
other two groups: greater acquisition of developmental knowledge, in-
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creased participation in the home treatment program and continued in-

volvement with that program at one-year follow-up, and greater ability to
discriminate and report their infants’ developmental gains. In comparing
the groups on child outcomes, children in the DE group achieved more
skills that were the target of the home program and had greater motor
dcvelopment gains. Other aspects of developmental progress did not differ
among the three groups.
A randomized controlled study by Parker, Zahr, Cole, and B r e ~ h t ~ ~
demonstrated that a simifar developmental intervention in the neonatal
intensive care unit for 41 mothers of preterin infants was effective. Infants
in the experimental group showed mental and motor gains, their mothers
rated their temperaments as less difficult, and the home environment was
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more devclopinentally appropriate. These two ~ t u d i e s ~demonstrated

~3~~
that an educational program that focused on the family-centred elements
of providing general and specific information, building on parents’ skills,
and individualizing services resulted in inore parental involvement and
positive outcomes for both children and parents.
In a study by Davis and Gettinger3* 43 parents of children with special
needs were randomly assigned to one of three family-focused assessment
methods: (1) self-report measures, (2) self-report measures combined with
a structured interview, and (3) an open-ended interview. The purpose was
to examine parents’ preferences among assessment methods, the nature and
amount of infoimation obtained about a family, and parents’ evaluations
of their assessment experiences. At pre-assessment, more parents preferred
the method of completing self-report measures along with a structured
interview vs. either the self-report measures alone, or an interview. At
post-assessment, however, all three methods were evaluated highly by
parents regardless of whether they received their preferred method. Only
minimal differences were found across methods in the nature and amount
of information gathered about a family’s strengths, resources, concerns,
and priorities.
These data showed high evaluations across the assessment methods
because each incorporated the family-centred elements of assisting fami-
lies to identify their strengths and needs. Varying preferences for a particu-
lar method among families also emphasized the importance of individual-
 12 Fattiily-Cetitt,ed Assessrrieril arid Itirervetilioti it? Pediatric Rehnbilitrrtioti

izing services. These arc important findings in themselves to support

family-centred service; nevertheless, this study could have provided more
definitive research evidence on the effectiveness of a family-centred ap-
proach if a control or comparison group that did not receive a family-fo-
cused assessment had been used.
The work by Stein and J e ~ s o p ~offers
’ . ~ ~additional support for several
elements of the family-centred framework. In a randomized controlled
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trial, 2 19 families of children with chronic illness were assigned to receive

either the Pediatric Home Care program (PHC) or standard care (SC) as
the control ~ondition.~’ The PHC was described as “an integrated biomed-
ical and psychosocial approach” that focused on the whole family and its
needs, while the standard care was comprised of those services traditional-
ly offered at their hospital. Of the five outcomes assessed, two differed
significantly between the PHC and SC groups, with the PI1C group show-
ing greater parental satisfaction with care and better psychological adjust-
ment of the child. Mothers’ psychiatric symptoms also lessened although
this finding did not reach statistical significance. No differences between
the groups were found on a measure of the impact of the child’s condition
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on the family and on the child’s finctional status. In a follow-up study

4.5-5 years later, Stein and J e ~ s o demonstrated
p~~ the long-term effects of
the PHC program when the PHC children scored significantly better on
overall adjustment and significantly higher on four of the six subscales of
the Personal Adjustment and Role Skills scale,33the same measure used in
their earlier work.
These positive results deserve further comment. The authors indicated
that the PHC program encouraged families to become more actively in-
volved in taking responsibility for managing their child’s care and for
making informed decisions in partnership with the health care providers.
The PHC program also included coordinating services, health education,
and support. Although its name indicates a home-based model of care
delivery, services were provided in other traditional locations where ap-
propriate such as clinics, in-patient units, the PMC office, school and
community, thus demonstrating its individualized approach. Many of the
features described here and in the above paragraph are the same elements
outlined in the Family-Centred Service framework and are represented
across all three premises of the framework.
Pless and colleagues34 conducted a randomizcd controlled study to
examine the effectiveness of a specialized nursing intervention in reducing
or preventing adjustment problems in children with chronic physical dis-
abilities. The nurses focused on overall concerns of the child a i d family,
provided support and individualized services, and collaborated with the
 Roseribaritn el al. 13

families to identify their needs and strengths, to build on the family’s

strengths, and to obtain the services families needed. Compared with the
control group (n = 161), the children receiving the intervention (n = 171)
were significantly different on two of the three outcome measures. These
children had higher scores compared with controls on a parent-completed
measure of hnction and role performance, indicating better psychosocial
adjustment, and had significantly better scores on several subscales of a
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child measure of self-worth. The groups did not differ on a measure of

child behaviour problems. Their findings support the effectiveness of a
family-centred approach, in this case as offered by nurses, to help reduce
or prevent children’s adjustment problems.
Summary of Research Evidence. This review of pediatric research dem-
onstrates considerable evidence of the effectiveness of a family-centred
approach to service delivery. Sixteen of the 19 elements in the Family-
Centred Service framework have been addressed in studies of varying
quality (Table 2). Research using all classes of evidence has been directed
at every element under the first premise. Under the second premise, the
elements of “respect families,” “provide individualized care,” and “ac-
For personal use only.

cept diversity” are supported by rigorous evidence. Unfortunately, the

elements of “support families” and “listen” have received little attention
while “believe and trust parents” and “communicate clearly” were not
identified specifically in any of the studies. Some elements under the third
premise have been examined by several researchers using Class 1 or 2
evidence. Although the element, “encourage use of community supports,”
has been studied only minimally, the research evidence as cited by Shel-
ton35 on the benefit and effectiveness of family and parent support pro-
grams is why service providers are encouraged to do those things that
make a difference. The other two elements under the third premise have
received little or no attention.
Another way of summarizing these findings is to identify what out-
comes have and have not been examined. Table 3 outlines the outcomes
used in the studies reviewed in this section. Satisfaction is an outcome in
many of the studies and is represented across three of the four classes of
evidence. The outcomes in Classes 3 and 4 focus on parent outcomes while
those for the studies with stronger evidence of effectiveness under Classes
1 and 2 generally include child and family outcomes in addition to parent
ones. Future research must continue to employ outcomes from multiple
perspectives as well as to increase the breadth of outcomes
In addition to recognizing the need for further research on the less
studied elements of the family-centred framework, and for the inclusion
and expansion of the types of outcome measures used, other factors need
 I4 Fuiigify-Ceiitred Assessirieiit atid Ititerveiitioti in Pediittric Rekubilitntiori

Consideration in making sense of these studies and their results. As indi-

cated at the beginning of this research evidence section, this review may
not include relevant studies due partly to the varying terminology, and the
multi-diinensional nature of this framework, This problem is highlighted
by the Caro and DcrevenskyL9(a Class 2 study) and the Stein and Jessop3’
studies which examined an entire program of service delivery. These au-
thors could not discern which elements, acting either alone or in some
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combination with other elements, produced the positive results. No nega-

tive findings were included in this review because none were found; how-
ever, this may be due to biases against investigating, reporting or publish-
ing negative results.
The findings presented in this review provide considerable support for
the effectiveness of family-centred service, and point to future research
directions. The evidence presented here inust be built upon by continuing
to search in the literature for well-designed studies that target, in particu-
lar, those elements outlined above that have received little or no research
attention. The findings need to be replicated, and longitudinal studies are
needed to examine the long-term effectiveness of a family-centred ap-
proach to service delivery. As well, cost-benefit analyses should be incor-
For personal use only.

porated into research studies to assist practice and policy decision-inak-

ing.38

IMPLICATIONS OF FCS FOR SERVICE PROVIDERS

Ultimately whether one adopts this particular framework of FCS or

another, it is clear that service provision for children with chronic prob-
lems of health or development will continue to evolve in the direction of
parent and family control of what is done.39 This notion can be both
liberating and threatening for service providers.
The threats are apparent. Service providers are no longer revered as
authorities to whom parents turn uncritically for wisdom and advice. Pro-
fessionals are being recognized as human and fallible, and even when our
advice is sound people may not wish to listen to our formulations! This
shift in power relationships can easily lead service providers to feel deval-
ued, unskilled and puzzled by the changes from roles we have traditionally
adopted. Some people may wish to cling to the old models, in the hope that
this trend will vanish. At times parents inay make choices that are different
froin what we believe are the “best” decisions. They do so by weighing up
factors that inay include our advice, but likely incorporate other consider-
ations unknown to us. These actions and judgments are the parents’ rc-
 Rosetibairiri et nl. If

sponsibility, and unless they make decisions that put a child at physical or
psychological risk, parents have to be respected.
On the other hand, in an era of FCS the responsibilities for the well-be-
ing of children have shifted back where they belong (and in fact always
were)-to the family. Service providers are no longer bearing the burden of
curing and caring, as might have been the case at a t h e when paternalistic
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health care was the prevalent model. Rather, parents now seek partner-
ships with service providers built on trust, respect, enableineiit and accep-
tance of them as competent individuals. Service providers continue to be
consulted for their knowledge and perspectives, and parents want their
ideas about diagnosis, prognosis and management. Nevertheless, the inter-
personal dimensions of F C S t h e “elements” in the inodel of FCS pre-
sented here-are the aspects of care and services to which service providers
in the 90s must address themselves. Parents have access to enormous
amounts of information and often know inore facts about the child’s
condition than we. Still research by our group40 and 0 t h e r s ~ I 1indicates
~~
that parents continue to report that, in general, their needs for information
For personal use only.

are not being met adequately. In addition, what they want fiom service
providers are the elements of caring and support that cannot be found in
books or on the Internet.
The skeptic may feel that all these FCS ideas are mere words for things
they have always known and done anyway. Because these ideas represent
a shift rather than a radical departure into totally new realms of practice,
they can in some ways be harder to adopt than a totally novel approach.
The experience of our research group in helping others understand and
implement this FCS framework has been that adoption is a process rather
than an endpoint. We believe that people who are honest, prepared to
reflect on their beliefs and values, and open to considering the perspee-
tives of others (particularly parents) will find the challenges well worth the
work required to adapt, and to adopt FCS ideas.
The FCS framework presented here appears to have value as a teaching
tool. Furthermore adoption of a model of FCS such as this framework also
provides service providers or programs with a basis on which to measure
both the perceptions of parents and their own behaviours. Several investi-
g a t o r ~ ~have ~ $created
~ ~ , instruments
~ ~ to evaluate the degree of family-
centredness of programs froin both parental and service provider perspec-
tives. We believe that such program evaluation will become increasingly
important as expectations for family-centred services grow.
Returning briefly to the case scenario that opened this paper, how might
011e use the concepts of FCS to address parental concerns and the dilein-
mas of the service providers? Jeremy’s parents are clearly caught in a
 16 Family-Centred Asscssrtietit mid Ititerwntioii iti Pediatric RehaDilitcrlior?

difficult bind, wanting to listen to their professional advisors, but not

wanting to disagree with Jeremy’s grandparents. In a situation like this the
service providers might suggest a joint visit with the grandparents-per-
haps at the family’s home-in order for everyone to explore the issues
together. Such an approach respects the family’s need to be in charge,
accepts the reality of the extended family’s role in influencing decision-
making, and brings the professional perspectives to the family in a way
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which respects their integrity, The family could be offered the chance to
meet and talk with other parents who have been in the same dileinina as
they now face, and to learn how they have made their decisions. If the
parents still do not want to iinplenient an alternative communication sys-
tem, the service providers working with Jeremy and his family should
respect that decision; however, they might also find it useful to set some
specific behavioural goals for Jeremy, and a time-line by which these will
be evaluated and the present decisions reviewed. By doing this they would
be demonstrating acceptance of the parents’ choice; at the same time they
would have negotiated a plan that might be acceptable to all concerned.
The inere act of respecting and supporting the parental dilemma might
ease the parents’ mind, increase their trust in Jeremy’s service providers,
For personal use only.

and make their next encounter more comfortable and productive for every-
one.

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 Rosenbaiim et al. 19

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APPENDIX A

Sources of Information for the Family-Centred Service Framework

Beach Center on Families and Disability. Quality criteria for family support
programs. Beach Center on Families and Disability Newsletter; 1993
For personal use only.

Boumbulian PJ, MacGregor WD, Delbanco TL, Edgman-Levitan S, Smith

DR, Anderson RJ. Patient-centered patient-valued care. J Health Care
Poor Undersewed. 1991;2:338-346
Brewer EJ Jr, McPherson M, Magrab PR, Hutchins VL. Family-centered,
cormnunity-based, coordinated care for children with special health
care needs. Pediatrics. I989;83: 1055-1060
Dunst C, Trivette C, Deal A. Enabling and Empowering Families. Cam-
bridge, MA: Brookline Books; 1988
Dunst C, Trivette C. An enablement and empowerment perspective of case
management. Top Early Child Spec Educ. 1989;8:87-100
Epstein SG, Taylor AB, HaIberg AS, Gardner JD, Klein Walker D, Crock-
er AC. Enhancing QualityStandards and Indicators of Quality Care
f o r Children with Special Health Care Needs. Boston, MA: New Eng-
land SERVE; 1989
Johns N, Harvey C. Training for work with parents: strategies for engag-
ing practitioners who are uninterested or resistant. Inf Young Children.
1993;5(4):52-57
McInnes S, Spence J. Family-centered care: our vision for thc future.
Workshop presented at The Children 4 Rehabilitation Centre of Essex
County. Windsor, ON; 1993
Murphy D, Lee I. Family-Centered Program Rating Scale Llser 4 Manual.
2nd ed. Lawrence, KS: The University of Kansas, Beach Center on
Families and Disability; 1991
National Center for Family-Centered Care. What Is Fumily-Centered
 Care? (brochure) Bethcsda, MD: Association for the Care of Children’s
Health; 1990
Roberts RN, Magrab PR. Psychologists’ role in a family-centered ap-
proach to practice, training, and research with young children. Am
Pcyychol.I99 1 ;46: 144-148
Shelton TL, Jeppson ES, Johnson BH. Family-Centered Curefor Children
with Special Health Care Needs. 2nd ed. Washington, DC: Association
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for the Care of Children’s Health; 1989

Suimners JA. Family-Friendly Strategies for Gathering Inforination on
Family Strengths and Needs. Preconference training workshop con-
ducted at the Sixth International Early Childhood Conference on Chil-
dren with Special Needs, International Division for Early Childhood of
the Council for Exceptional Children, Albuquerque, NM; 1990
Trivette CM, Dunst CJ, Allen S, Wall L. Family-centeredness of the Chil-
dren’s Health Care journal. Child Health Care. 1993;22:241-256
Tunali B, Power TG. Creating satisfaction: a psychological perspective on
stress and coping in families of handicapped children. J Child Psychol
Psychiatry. 1993;34:945-957
Wertlieb D. Special section editorial: Toward a family centered pediatric
For personal use only.

psychology-challenge and opportunity in the International Year of the

Family. JPediatr Psychol. 1993;18:541-547