See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/5268186

Family-Centered Theory: Origins, Development, Barriers, and Supports to

Implementation in Rehabilitation Medicine

Article  in  Archives of Physical Medicine and Rehabilitation · July 2008

DOI: 10.1016/j.apmr.2007.12.034 · Source: PubMed

CITATIONS READS
250 9,709

2 authors:

Elena L Bamm Peter L Rosenbaum

McMaster University McMaster University
4 PUBLICATIONS   293 CITATIONS    569 PUBLICATIONS   55,711 CITATIONS   

SEE PROFILE SEE PROFILE

Some of the authors of this publication are also working on these related projects:

Development and initial validation of an assessment of visual ability for children with cerebral palsy View project

Focus project View project

All content following this page was uploaded by Peter L Rosenbaum on 05 May 2018.

The user has requested enhancement of the downloaded file.

1618

SPECIAL COMMUNICATION

Family-Centered Theory: Origins, Development, Barriers, and

Supports to Implementation in Rehabilitation Medicine
Elena L. Bamm, PT, BA, Peter Rosenbaum, MD, FRCP(C)
ABSTRACT. Bamm EL, Rosenbaum P. Family-centered the- discusses valid quantitative measures of family-centeredness
ory: origins, development, barriers, and supports to implementa- currently available to evaluate service delivery.
tion in rehabilitation medicine. Arch Phys Med Rehabil 2008;89:
1618-24. HISTORY
When a discipline experiences a paradigm shift, it often
The concept of family-centered care was introduced to the
takes years, sometimes decades, until the theory gains substan-
public more than 4 decades ago, stressing the importance of the
tial ground to become generally accepted and implemented in
family in children’s well being. Since then, family-centered
the field. The theory undergoes modifications and adaptations;
values and practices have been widely implemented in child
it is influenced by cultural and political factors, and interacts
health. The purpose of this article is to offer an overview of the
with other philosophies in the area of interest. Its evolution is
development and evolution of family-centered theory as an
a dynamic process of development and growth.
underlying conceptual foundation for contemporary health ser-
The starting point of family-centered theory can be traced
vices. The focus includes key concepts, accepted definitions,
back to when Carl Rogers began practicing client-centered
barriers, and supports that can influence successful implemen-
therapy in psychiatry almost 70 years ago. He saw client-
tation, and discussion of the valid quantitative measures of
centered therapy as a continuing process, in which the therapist
family-centeredness currently available to evaluate service de-
treats the individual as a person of worth and significance, and
livery. The article also provides the foundation, and proposes
respects the client’s capacity and right to self-direction. Pre-
questions, for future research.
senting “Newer Concepts in Psychotherapy” as a guest lecturer
Key Words: Patient-centered care; Program evaluation;
at the University of Minnesota in 1940, Rogers was surprised
Rehabilitation.
by the interest his ideas evoked.11 In 1959, Rogers diagram-
© 2008 by the American Congress of Rehabilitation Medi-
matically presented the implications of a therapeutic relation on
cine and the American Academy of Physical Medicine and
family life and society. The key idea was mutual influence of
Rehabilitation
the treatment process, family dynamics, and individual func-
tion and participation in social life.11
Nothing is so practical as a good theory. In the mid-1960s, Rogers’s ideas were embraced by the
Kurt Lewin as quoted in Rogers1(p15) Association for the Care of Children in Hospital (subsequently
the Association for the Care of Children’s Health). This parent
N THE PAST CENTURY, there have been revolutionary
Ihuman
transformations in political, social, and scientific aspects of
life. The health care system is no exception. The transition
advocacy movement took client-centeredness to the next level
by stressing the importance of the family in children’s well
being.12 It took almost 20 years until the Education for All
from medically focused to client-centered and family-centered Handicapped Children Act Amendments of 1986 in the United
models of service delivery has its roots in perceptional transfor- States granted families of children with special needs legal
mation of humanity. Political agendas regarding family rights power to become an equal partner in the health care team.7,12
have been introduced. For example, 1994 was pronounced the The ecological theory of child development outlined by
United Nations International Year of the Family,2 and academic Bronfenbrenner in 1979 stressed the importance of considering
publications have led to increased public awareness.3-10 People not only the immediate family but also the extended family and
have better access to information, and their higher expectations of environment when working with children.5 The inclusion of the
service provision, as well as increased life expectancy, require family in care decision-making has been expanded in North
well-developed and coordinated health services. America’s pediatric settings in the last 20 years.10,12-17
The purpose of this article is to present the development and The recent shift from client-centeredness to family-centered-
evolution of family-centered theory as an underlying concep- ness in the care of the adult population was probably initiated
tual foundation for contemporary health care. The focus in- by the recognition of the significance of treating the patient in
cludes key concepts, accepted definitions, barriers, and sup- the context of the family and the general perception of the
ports that can influence successful implementation, and then family as the basic social unit—the main educator, supporter,
and shaper of each person.2,17-20 The Universal Declaration of
Human Rights Article 16/3, presented by the United Nations
General Assembly in 1948, states that, “The family is the
From the School of Rehabilitation Science (Bamm) and CanChild Centre for
Childhood Disability Research (Rosenbaum), McMaster University, Hamilton, ON,
natural and fundamental group unit of society and is entitled to
Canada. protection by society and the state.”21 This systemic view of
No commercial party having a direct financial interest in the results of the research
supporting this article has or will confer a benefit upon the authors or upon any
organization with which the authors are associated.
Reprint requests to Peter Rosenbaum, MD, FRCP(C), CanChild Centre for Child- List of Abbreviations
hood Disability Research, IAHS Bldg, Room 408, 1400 Main St W, Hamilton, ON
L8S 1C7, Canada, e-mail: [email protected]. MPOC Measure of Processes of Care
Published online June 30, 2008 at www.archives-pmr.org. QOL quality of life
0003-9993/08/8908-00299$34.00/0 RCT randomized controlled trial
doi:10.1016/j.apmr.2007.12.034

Arch Phys Med Rehabil Vol 89, August 2008

 FAMILY-CENTERED THEORY, Bamm 1619

the family initiated the development of family systems theory, However, because the function and perception of family
derived from general systems theory presented by Von Berta- vary according to the cultural and political environment, such
lanffy in 1968.17,18,22 The main principle of general systems a definition of family-centeredness might differ from country to
theory that is applicable for systems in general is the impor- country and from one setting to another. The definitions found
tance of seeing any system as a whole. Von Bertalanffy23 stated in the literature range from study-specific19,29,30 to age-specific
that a system and the behavior of its elements can only be or diagnosis-specific,31 to comprehensive definitions intro-
explained when addressing all the parts in their mutual inter- duced in recent years.32 To illustrate, consider 2 of many
action and influence. The sum of parts independently described existing definitions.
is not equal to the general picture of the system they form. The CanChild Centre for Childhood Disability Research
Thus, in the health care field, the family represents one of the describes family-centered service as an approach to provid-
most valuable sources of support and important insights on ing services for children with special needs: family-centered
behavior and coping strategies of the individual.5,19,20 service is a philosophy and method of service delivery that
Serious illness or injury brings with it an inevitable distor- (1) recognizes parents as the experts on their child’s needs,
tion of family dynamics and fine equilibrium. The ability of the (2) promotes partnership between parents and service pro-
family to reorganize and reduce the stress, to provide a healthy viders, and (3) supports the family’s role in decision-making
environment for all members of the family and initiate the about services for their child.31
healing process, differs from one family to another. This According to the Institute for Family-Centered Care:
unique pattern has to be respected and addressed appropriately. patient-centered and family-centered care is an innovative
Friedman’s family assessment model provides a useful tool that approach to the planning, delivery, and evaluation of
takes into account a family’s stressors, strengths, perceptions, health care that is grounded in mutually beneficial part-
coping, and adaptation strategies. According to assessment nership among patients, families, and providers. It applies
outcomes, specific family concerns and problems can be ad- to patients of all ages, and it may be practiced in any
dressed and timely help offered.24 health care setting.32
With an aging population and a larger proportion of people Although different according to the populations they serve,
living with chronic diseases and disabilities, the main objective of the main concepts in these definitions (family as expert, the
the health care system has been shifting from providing curative importance of partnership during the whole interaction) appear
treatments to providing support and remediation and improving to be very similar.
function and health-related QOL.25 To improve QOL and increase MacKean et al9 conducted a comprehensive literature review
the life span of families dealing with serious health conditions, all to condense the main concepts of family-centered care most
possible supportive systems have to be employed: the social frequently described in the child health literature. These are as
system by encouraging participation in the community life; the follows:
political system by providing financial support, as well as promot- 1. Recognizing the family as central to and/or the constant
ing policies to remove environmental barriers that limit participa- in the [child’s] life, and the [child’s] primary source of
tion; emotional and spiritual support systems provided by ex- strength and support;
tended families, friends, and religion; and the health care system 2. Acknowledging the uniqueness and diversity of [chil-
by maintaining the best possible function given the limitations of dren] and families;
the illness. A family-centered approach provides an important 3. Acknowledging that [parents] bring expertise to both the
conceptual foundation for a contemporary model of health service individual care-giving level and the systems level;
delivery, as is evident from numerous publications of the last 4. Recognizing that family-centred care is competency en-
decade, not only in professional journals, but also in the public hancing rather than weakness focused;
press.3,4,12,19,22,24,26-28 5. Encouraging the development of true collaborative rela-
tions between families and health-care providers, and
DEFINITION AND MAIN PRINCIPLES partnership; and
For a theory to become accepted and implemented in the 6. Facilitating family-to-family support and networking,
field, it has to be clearly defined, and its main principles must and providing services that provide emotional and finan-
be outlined. Explicit definition of the concepts provides com- cial support to meet the needs of families.9(p75)
mon language for interprofessional communication and proper Although this framework represents pediatric care perspec-
interpretation of the ideas by service providers. In 2001, Briar- tives, it describes the same ideas (such as the family as expert
Lawson et al2 published an international interdisciplinary con- and source of support, uniqueness, and partnership) that form
ceptual framework for building family-centered policies and the core of a general family-centered approach.
practices. It states that, “as diverse as they may be, all family- Although the definitions of the main concepts of this ap-
centered policies and practices share the following 5 important proach such as dignity and respect, information sharing, par-
features”: ticipation, and collaboration have become clearer over the
1. Families are considered experts in what helps and hurts years,19,29-32 practical implementation of a theory represents
them. the real challenge faced by every innovation in the field. The
2. Families are indispensable, invaluable partners for pol- questions addressed by this narrative literature review are as
icy makers, helping professionals, and advocates. follows: How is the family-centered theory put into practice?
3. Families are not called, or treated as, dependent clients. What are the barriers and supports that affect the implementa-
Helping professionals and policy makers view families tion of this theory? Is it testable?
as equals, as citizens, with whom they collaborate, and
whom they empower. LITERATURE REVIEW
4. Family-centered policies and practices . . . promote family-
to-family and community-based systems of care and mu- Search Strategy
tual support. In preparing this narrative review, we have attempted to
5. Family-centered policies and practices promote democ- portray the contemporary state of the family-centered theory as
ratization and gender equity.2(p185-6) it appears in scientific publications, specific commentaries,

Arch Phys Med Rehabil Vol 89, August 2008

1620 FAMILY-CENTERED THEORY, Bamm

official websites, textbooks, and documentary books. A litera- The basic components of the programs included appointment
ture search was conducted between November 2006 and March of a staff member to guide and support the family throughout
2007 in Medline (looking at the literature from 1966 to October hospitalization, as well as constant communication between
2006), EMBASE (1980 to 2006 week 42), PubMed (published primary physician and family, and timely provision of infor-
at any date), and CINAHL (1982 to March 2007). The main mation. The programs were evaluated by administering the
key words used were family-centered or centred, client cen- Critical Care Family Needs Inventory in the study by Giu-
tered, rehabilitation, theory, and measures. The references of liano28 and the Parent Satisfaction Survey in the study by
the articles retrieved were also examined to extract other pub- Madigan.33 Overall improvement in timely information provi-
lications of interest. Moreover, the websites of the Institute for sion and communication between families and care providers
Family-Centered Care and the Picker Foundation were was demonstrated in both studies; however no statistical sig-
searched for additional references. A total of 85 publications
nificance was reported, making it difficult to estimate the
were reviewed, and 50 were selected for inclusion on the basis
of the following criteria: RCTs on comparison of conventional efficacy of the programs.28,33
with family-centered treatments, historical development of the Visser-Meily et al39 in the Netherlands and Van Horn et al27
theory, systematic reviews on family-centered programs and in the United States conducted systematic reviews examining
interventions, use of outcome measures of family-centeredness interventions for caregivers of patients poststroke and patients
in different settings and age groups, and English language. with cardiovascular diseases, respectively. In the studies re-
Publications were excluded if they described family-centered viewed, the interventions included information and educational
interventions rather than family-centered care; investigated in- sessions, client-specific goal settings, and psychologic and
dividual aspects of family-centered care without referring to emotional support. Although most studies reviewed in Visser-
family-centered service per se; concentrated on the physical Meily39 (14/22) and Van Horn27 (9/13) had an RCT design, the
aspects of the intervention, such as architectural adaptations, variety of interventions and outcome measures used and the
day-to-day care, and financial support without considering psy- small sample sizes did not allow any clear conclusions to be
chosocial facets of care; or focused on the patient without drawn. In general, most studies demonstrated that the caregiver
considering the context of the family. interventions implemented had decreased depression rates, im-
proved satisfaction with care and health-related QOL, led to
Theory Use more active participation in community life, and overall re-
Most literature existing today on family-centered care is ported better family dynamics for patients and caregivers.
drawn from the field of child health; the interest in new ap- Litchfield and MacDougall35 described professionals’ under-
proaches in adult health care has become apparent only in standing of the main concepts of family or client-centered care,
recent publications.12,20,28,33,34 Although research conducted how they see themselves implementing it in practice, and the
by different disciplines9,22,26,35-38 identified important domains main skills that are required for successful accomplishment.
and definitions of family-centeredness9,12,31 (see Definition and They explored perspectives of physiotherapists working in
Main Principles section), professionals in various fields of the family-centered settings in Australia. Semistructured inter-
health care system are experiencing an ongoing struggle with views were conducted with 10 physiotherapists. The main
the implementation of the concepts of family-centered care into characteristics of the interaction involved setting family-spe-
practice.7,9,17,35 Questions raised by these professionals include cific goals, providing education and counseling, and enabling
the following: How do they provide essential information to informed decision-making. The participants emphasized the
each family? How can they avoid being just “the expert” and importance of policies (at the federal or local levels) to facil-
become a partner? How will they know when they are expected itate acceptance of family-centered care as a new approach to
to guide and when just to listen? As an example, MacKean et service delivery. In addition, the physiotherapy participants
al9 explored use of family-centered concepts by developmental expressed concerns regarding the change in their professional
services at a children’s hospital in Alberta, Canada. Focus roles, credibility, and skills required to implement family-
groups and individual interviews were conducted with parents centered care.35
and service providers. The findings suggested that while fam- Several articles offer an insight into how patients and fam-
ilies were very interested in working collaboratively with ser- ilies understand family-centered care and what professional
vice providers, professionals still tend to prescribe the role of competencies are required from the health care providers to
the parents in the interaction. In some cases, families felt that meet their expectations. Attree36 and Little et al30 in United
they had more responsibilities than they could manage. Simi- Kingdom, Epstein37 and King and Semik38 in the United
larly, mothers of young children with disabilities communi- States, and Wachters-Kaufmann40 and Schoot26 and colleagues
cated identical problems with the implementation of a family- in the Netherlands explored patients’ and families’ require-
centered approach.17 Analysis of interviews and observational ments for “good” care. The results were similar across these
data collected for that study showed that some mothers felt that qualitative studies. Participants stated that the most important
appearing to be good mothers in the health provider perspective issues in health care services were individualized, patient-
by sharing the responsibility for the treatment could jeopardize centered care; clients’ involvement in their care; availability
their roles as mothers. Moreover, many expressed apprehen- and accessibility of the staff; interprofessional communication;
sion about being unqualified to fulfill the role of the therapist.17 and relevant and timely information provision, which are the
More research is required to understand how professionals and main components of family-centered care.2,9 The most inter-
families can work in collaboration. esting finding, however, was that participants rated human
On the basis of previously outlined concepts and theoretical qualities of the professionals, such as kindness, concern, com-
frameworks of family-centered care,1,2,9,11 several new pro- passion, sensitivity, and approachability, as being of much
grams have been developed to enhance family-centeredness in higher importance than technical competences.
different settings. Giuliano et al,28 working with critically ill The personal story of Lanza41 demonstrated a valuable ex-
adults, and Madigan et al,33 working with children undergoing perience of crossing the line: a nurse who suffered massive
heart surgery, presented programs specifically developed to stroke presented a list of lessons to help nurses better under-
improve family-staff communication in intensive care units. stand stroke survivors. The most important messages were to

Arch Phys Med Rehabil Vol 89, August 2008

 FAMILY-CENTERED THEORY, Bamm 1621

allow control over the “little things,” and encourage advocacy professionals still feel more comfortable practicing in a bio-
by family members on behalf of patients. medical model.12,34
Although carried out in different countries, qualitative stud- Different models of family-professional interaction have
ies by MacKean9 and Morris42 and colleagues report similar been presented over the last 20 years.34,35,43 A 7-level hierar-
attitudes by clients and health professionals, respectively. What chy model of family-therapist involvement has been proposed
makes these studies of high informational value is their 2-sided by Brown et al.43 The levels were based on analysis of occu-
perspective investigation performed under the same conditions. pational therapist⫺family interaction outcomes expressed by
Morris et al42 explored patient, carer, and staff experiences of the therapists in the open-ended interviews. The collected data
in-hospital rehabilitation after stroke, whereas MacKean et al9 also allowed researchers to outline technical and personal qual-
were interested in how understanding of family-centered care ities required from therapists for successful collaboration. In
varied among families and health professionals in pediatric this model, levels 1 to 3 represent no to little involvement of
settings. Core themes identified by all participants were similar the family in the treatment process, levels 4 and 5 show some
across these studies and consisted of personalized care, timely involvement as coclient or consultant, and levels 6 and 7
information provision, staff competency and expertise, and represent true family-centered collaboration. Litchfield and
efficient interprofessional communication. Whereas patients MacDougall35 later investigated practical implementation of
and carers saw the former 3 as being the most important aspect the model by physiotherapists working in family-centered and
of good care, health professionals tended to stress the impor- community-based settings. The study revealed that most phys-
tance of medical competencies over informing the families on iotherapists were comfortable working with families as assis-
all the aspects of care. The results of these studies correspond tants and consultants, but felt threatened by sharing power and
to outcomes of research described in previous sections of this responsibilities with the families.35
review. These outcomes raise other factors that might act as barriers
Although recent qualitative studies have identified the same to implementation, such as competency and confidence of the
main concepts of family-centeredness by clients and health health professionals. After practicing in a paternalistic model
care providers, the discrepancy between patients’, families’, for many years, it is not easy for people to move to a new way
and professionals’ perspectives becomes apparent if the issues of providing care, even if the concepts are clear and relevant.12
described in the publications are summarized as embraced by Although the differences between patient-centered and family-
each group.9,26,28,30,33,35-38,40-43 Families view availability, ac- centered care do not appear at first sight to be substantial, the
cessibility, and communication as the most important issues for family issues cannot just be added to previous models. The
collaborative relations, whereas professionals see their primary whole conceptual framework has to be reorganized to become
responsibility as providing education, counseling, and informa- both patient-centered and family-centered.6,7 However, many
tion (appendix 1). Moreover, partnership was the one criterion professionals do not feel confident enough to become engaged
most often identified by the patients and families that was not in family-centered care.6,12,35 Collaborating with families as
mentioned by health care providers at all. As stated by Mac- well as with clients presents specialists with new challenges
Kean, “Family-centered care is beginning to sound like some- that professionals did not necessarily have to face before.6
thing that is being defined by experts and then carried out to Emotional and social involvement with families requires com-
families, which is ironic given that the concept of family- petency in addressing psychologic issues, and interpersonal
centered care emerged from a strong family advocacy communication skills such as honesty, respect, tolerance, and
movement.”9(p81) flexibility.7 In addition, specialists have to be confident enough
not to feel threatened by the power shifts and the changes in
their professional roles.6,7,34,35 Moreover, on the basis of recent
Barriers and Supports to Implementation of qualitative studies conducted in different rehabilitation set-
Family-Centered Theory tings, it still appears to be unclear to health professionals and
The implementation and acceptance of a theory can take families what real collaboration is and how to make it
years or even decades.12 For the most part, barriers and sup- work.9,35,42
ports to implementation of any innovation can be divided into Financial factors. One of the frequently asked questions is
political, conceptual, financial, and attitudinal factors.6,7,9,32,35 the following: Does patient-centered and family-centered care
Political and conceptual factors. Professionals are usually cost more?32 Recent qualitative studies have indicated that
more willing to accept changes when managers and leaders of although it requires an initial investment for education of the
the organization they work for provide personal examples and staff and development of the new strategies, in the end, the
guidance, or when the new approach is enforced by legislation benefits outweigh the expenses.19,29,35,38,39,44 Mant et al45 con-
and policies.6 Johnson states that for family-centered care to be ducted an RCT to assess the impact of a family support
embraced by the health providers, “Family-centered values program for stroke survivors and their families. The results
must be articulated in the organization’s philosophy of care, were lower depression and anxiety rates (P range, .01⫺.04),
mission statement, or strategic plan.”6(p19) Friedemann et al22 and less use of specialist services (P⫽.04). In agreement with
indicated that in nursing homes with family-oriented nursing Mant,45 several other studies indicated clinically important
home policies and practices, families were more likely to report improvement in treatment outcomes (both functionally and
actual involvement in the care of their loved ones than families with respect to time), satisfaction with care, and QOL of entire
from facilities that did not encourage family involvement. family30,38,44; and decrease in depression rates and burden in
However, legislation by itself does not make the transition carers.19,37,38 These findings support the idea that in the long
process easier. For example, Litchfield and MacDougall35 de- term, family-centered care may improve effectiveness and ef-
scribed the main concerns of physiotherapists working for ficiency of the health services and reduce financial burden on
organizations with a family-centered approach as loss of their the system. However, more research is needed to explore direct
professional credibility, diminished recognition by other phys- financial benefits of a family-centered approach.
iotherapists, and as a consequence, fear for future employment. Attitudinal factors. According to Attree, “ . . . caring is as
Despite increased awareness of the importance of involving much a social as a physical process.”36(p462) Nevertheless,
patients and their families in their own health care, many health attitudinal issues are probably the least explored of all the

Arch Phys Med Rehabil Vol 89, August 2008

1622 FAMILY-CENTERED THEORY, Bamm

aspects of family-centered services. Because every person is several quantitative measures of family-centeredness described
unique, so are the attitudes toward any aspect of the surround- in the literature.10,49-52 The MPOC developed for families of
ing world, including the health care system. Health service children with disabilities by King et al49 in 1996 has demon-
providers’ attitudes are represented by 3 main points of view: strated good validity and reliability.10,49,50 Cronbach ␣ coeffi-
some believe that they have always practiced family-centered cients ranged from .81 to .96 for the 5 domains, and intraclass
care and thus do not require any change; others are confused correlation coefficients of the test-retest reliability ranged from
and frightened by the changes the new approach brings, and .78 to .88, demonstrating good stability. For construct valida-
uncertain what would be the best way to make the transforma- tion, MPOC scores were hypothesized to be negatively corre-
tion happen; and the minority do not want any change and are lated with parental stress level and positively with satisfaction
satisfied with the authoritarian status they have enjoyed for with care. Spearman rank correlation coefficients (␳) for asso-
many years of practicing in a medical model.4,6,12 The reasons ciation between stress and MPOC scores ranged from ⫺.47 to
for these disparities in perspectives are probably lack of edu- ⫺.55, and Pearson correlation coefficient (r) for association
cational programs and implementation strategies,46 and the between satisfaction and MPOC scores ranged from .40 to
scarcity of research to support effectiveness and efficacy of .64.49 Over the years, MPOC has given rise to several modi-
practicing family-centered care as opposed to a biomedical fications: MPOC-56 is the original version, MPOC-20 is the
approach.6,9 In 1988, a postgraduate course for teaching pa- shorter 20-question format that covers the same main aspects,
tient-centered and family-centered medicine to family medi- and MPOC-SP is a complementary form used in combination
cine residents was developed in Ben Gurion University of the with MPOC to measure service providers’ perspectives of
Negev in Israel. The course was based on the main concepts of family-centered care. The 5 domains of MPOC are enabling
family systems theory and has been reported as a valuable and partnership, providing general information, providing spe-
educational experience by most graduates. Participants ex- cific information, coordinated and comprehensive care, and
pressed that the program helped them understand and imple- respectful and supportive care.10,49,50
ment important aspects of physician–family interaction, and Give Youth a Voice is an additional adaptation of MPOC,
provided practical tools to deal with complex situations.46 developed by Campbell et al52 to reflect the special perspec-
Development and evaluation of effectiveness of interprofes- tives of adolescents’ experiences of family-centered care. The
sional educational programs is an essential step in converting Family-Centered Care Survey is a 20-item questionnaire to
family-centeredness from theory to practical ideas. measure adult patients’ satisfaction and family-centeredness of
Apart from the individuality of attitudes and wishes of each the care. Although it has demonstrated good face validity, its
person or family, there appear to be other determinants that overall validity and reliability have not been reported yet.50
may influence client⫺health care provider interaction. Sex and Previously, when trying to assess subjective outcomes of
age, cultural values, economic status, race, acute versus chronic interventions, global satisfaction was considered the best mea-
illness, and differences in attitudes toward family-centered care sure. Although satisfaction with care and family-centeredness
have all been pointed out as potential variables in many recent are interrelated (r range, .40⫺.64),31,49 the complexity of the
publications.5,8,19,26,27,29,37-40,47 Several publications indicated factors that were identified by patients as essential components
that differences in the course of psychologic and physiologic of family-centered care requires a measure that will quantify
recovery; family and social support systems; and outcome and differentiate all aspects of the service. This in turn will
expectations in men, women, and younger versus older adults allow effective reflection, knowledge transfer, and quality im-
were responsible for different attitudes toward family-centered- provement of successful and problematic areas of specific
ness of care.27,38 In general, women and/or older patients tend programs or facilities.30,36-40,49 Although MPOC has been
to be more satisfied with medical care. However, no evidence proved to be a reliable measure in children’s health settings, on
is available to date regarding relations between demographic the basis of the present literature review, no similar properly
characteristics of patients and families, satisfaction, and differ- validated measures of family-centeredness for an adult popu-
ent domains of the family-centeredness of care. lation were identified. Thus, it is important to develop and
Cultural differences were interestingly addressed by ethno- validate a generic measure that will be able to assess to what
graphic research methods in a publication by Hammer.5 Fam- extent adult patients and their families experience family-
ilies and therapists from different cultural backgrounds may centered care.
hold distinct beliefs and attitudes toward the whole interven-
tion. As an example, the importance of medical care can come CONCLUSIONS
as patients’ last priority after all other social and family re- Family-centered theory forms the foundation for delivery of
sponsibilities. Families might prefer not to have the responsi- health care services in a manner alternative to that provided by
bility of choosing the best treatment option, or may entrust the existing biomedical model.12 The ideas of family-centered-
decisions to the health professional as an expert. The key point ness were introduced more than 40 years ago and have been
is that the family should have a choice; respecting every widely implemented in the field of child health.1,7,10,12-16 The
family’s wishes requires exceptional flexibility and open-mind- subjective outcome measures developed for evaluation of par-
edness from health professionals. Hammer5 suggested that ents’ perspective of the services (eg, MPOC) demonstrate
literature reviews, written documents, interviews, and observa- statistically significant moderately positive correlations with
tion can be employed by the therapist to understand and em- satisfaction with services (r range, .40⫺.64) and negative
brace families’ perspectives. This in turn will allow real col- correlations with stress levels of caregivers (␳ range,
laboration to take place between 2 partners who share common .47⫺.55).10,14,15,31,49,50 Although many concepts and principles
values and goals. of family-centered theory have been transferred from child
Measures. One of the essential characteristics of a theory health to adult care practice, more research is needed in dif-
is its testability. Valid and reliable quantitative measures are ferent populations and settings to ensure the applicability of the
essential for evaluation of a theory’s utility, research develop- model to different age groups. Development of trustworthy
ment, and knowledge transfer. The development of measures of methods for evaluating or assessing the family-centeredness of
processes of human interaction is especially difficult given that care in the adult population is essential for research, knowledge
so many factors have to be taken into account.47,48 There are transfer, evaluation of change initiatives, and better under-

Arch Phys Med Rehabil Vol 89, August 2008

 FAMILY-CENTERED THEORY, Bamm 1623

standing of the barriers and supports to implementation. These 12. Rosenbaum P, King S, Law M, King G, Evans J. Family-centred
measures will also provide the evidence to support or reject the services: a conceptual framework and research review. Phys Oc-
concepts of family-centered theory. Important issues such as cup Ther Pediatr 1998;18:1-20.
the development of new policies and competencies, educa- 13. Haas DL. Historical overview of the development of family-
tional programs, and organizational frameworks have to be centered, community-based, coordinated care in Michigan. Issues
addressed, as well as the interpersonal and cultural differences Compr Pediatr Nurs 1992;15:1-15.
embedded in any human relation that makes the implementa- 14. Raina P, O’Donnell M, Rosenbaum P, et al. The health and
tion of the theory extremely difficult. well-being of caregivers of children with cerebral palsy. Pediatrics
Family-centered theory is continuing to develop, but is yet to 2005;115:626-36.
be fully understood, implemented, and effectively evaluated so 15. Brehaut JC, Kohen DE, Raina P, et al. The health of primary
it can be universally adopted as best practice. Opportunities caregivers of children with cerebral palsy: how does it compare
abound to move this exciting field forward with research and with that of other Canadian caregivers? Pediatrics 2004;114:
model practices. 182-91.
16. Law M, Teplicky R, King G, et al. Family-centred service: mov-
Acknowledgments: We thank Mary Tremblay, PhD, for many ing ideas into practice. Child Care Health Dev 2005;31:633-42.
fruitful discussions and for her extremely efficient editing assistance. 17. Leiter V. Dilemmas in sharing care: maternal provision of pro-
This work forms part of Bamm’s MSc thesis from the School of fessionally driven therapy for children with disabilities. Soc Sci
Rehabilitation Science, McMaster University.
Med 2004;58:837-49.
18. Sholevar GP, Perkel R. Family systems intervention and physical
APPENDIX 1: MAIN ASPECTS OF FAMILY- illness. Gen Hosp Psychiatry 1990;12:363-72.
CENTERED CARE IN CLIENTS’ AND HEALTH 19. Pryzby BJ. Effects of nurse caring behaviors on family stress
PROFESSIONALS’ PERSPECTIVES responses in critical care. Intensive Crit Care Nurs 2005;21:16-23.
20. Janzen W. Long-term care for older adults: the role of the family.
Clients’ Perception9,26,30,36-38,40-43 Professionals’ Perception9,28,33,35,43 J Gerontol Nurs 2001;21:36-43.
● Availability and ● Education and counseling 21. Office of the High Commissioner for Human Rights. Universal
accessibility ● Information declaration of human rights. Art 16(3). Available at: http://
● Communication ● Policies www.unhchr.ch/udhr/lang/eng.htm. Accessed April 11, 2007.
● Partnership ● Emotional support 22. Friedemann ML, Montgomery RJ, Maiberger B, Smith AA. Fam-
● Information (timely and ● Common goal setting ily involvement in the nursing home: family-oriented practices
situation-specific) ● Coordination and staff-family relationships. Res Nurs Health 1997;20:527-37.
● Advocacy and 23. Von Bertalanffy L. General system theory. New York: Braziller;
coordination 1968.
● Education and counseling 24. Callahan HE. Families dealing with advanced heart failure: a
challenge and an opportunity. Crit Care Nurs Q 2003;26:230-43.
25. Charles C, Gafni A, Whelan T. Shared decision-making in the
References medical encounter: what does it mean? (or it takes at least two to
1. Rogers CR. Client-centered therapy: its current practice, implica- tango). Soc Sci Med 1997;5:681-92.
tions, and theory. Boston: Houghton Mifflin; 1965. 26. Schoot T, Proot I, ter Meulen R, de Witte L. Recognition of client
2. Briar-Lawson K, Lawson HA, Hennon CB, Jones AR. Family- values as a basis for tailored care: the view of Dutch expert
centered policies and practices: international implications. New patients and family caregivers. Scan J Caring Sci 2005;19:169-76.
York: Columbia Univ Pr; 2001. 27. Van Horn E, Fleury J, Moore S. Family interventions during the
3. Sweeney BT. Family-centered care in public health nursing. Nurs trajectory of recovery from cardiac event: an integrative literature
Forum 1970;9:169-75. review. Heart Lung 2002;31:186-98.
4. Smiley OR. The family centered approach—a challenge to public 28. Giuliano KK, Giuliano AJ, Bloniasz E, Quirk PA, Wood J. A
health nurses. Can J Public Health 1972;63:424-6. quality-improvement approach to meeting the needs of critically
5. Hammer CS. Toward a “thick description” of families: using ill patients and their families. Dimens Crit Care Nurs 2000;19:
ethnography to overcome the obstacles to providing family- 30-4.
centered early intervention services. Am J Speech Lang Pathol 29. Liu KP, Chan CC, Chan F. Would discussion on patients’ needs
1998;7:5-22. add value to the rehabilitation process? Int J Rehabil Res 2005;
6. Johnson BH. Family-centered care: creating partnership in health. 28:1-7.
Group Pract J 1999;48:18-21. 30. Little P, Everitt H, Williamson I, et al. Preferences of patients for
7. Lawlor MC, Mattingly CF. The complexities embedded in family- patient centred approach to consultation in primary care: obser-
centered care. Am J Occup Ther 1998;52:259-67. vational study. BMJ 2001;322:468-74.
8. Fleury J, Moore SM. Family-centered care after acute myocardial 31. CanChild Centre for Childhood Disability Research. Facts con-
infarction. J Cardiovasc Nurs 1999;13:73-82. cepts strategies sheet. Available at: http://www.canchild.ca/
9. MacKean GL, Thurston WE, Scott CM. Bridging the divide Portals/0/education_materials/pdf/FCSSheet1.pdf. Accessed De-
between families and health professionals’ perspectives on family- cember 16, 2006.
centred care. Health Expect 2005;8:74-85. 32. Institute for Family-Centered Care. FAQ. Available at: http://
10. Dyke P, Buttigieg P, Blackmore AM, Ghose A. Use of the www.familycenteredcare.org/faq.html. Accessed December 19,
Measure of Process of Care for families (MPOC-56) and service 2006.
providers (MPOC-SP) to evaluate family-centred services in a 33. Madigan CK, Donaghue DD, Carpenter EV. Development of a
paediatric disability setting. Child Care Health Dev 2006;32: family liaison model during operative procedures. MCN Am J
167-76. Matern Child Nurs 1999;24:185-9.
11. Wexler DA, Rice LN, editors. Innovations in client-centered ther- 34. Doherty WJ, Baird MA, editors. Family-centered medical care: a
apy. New York: John Wiley & Sons; 1974. clinical casebook. New York: Guilford Pr; 1987.

Arch Phys Med Rehabil Vol 89, August 2008

1624 FAMILY-CENTERED THEORY, Bamm

35. Litchfield R, MacDougall C. Professional issues for physiothera- 44. Stewart M. Towards a global definition of patient centred care.
pists in family-centred and community-based settings. Aust J BMJ 2001;322:444-5.
Physiother 2002;48:105-12. 45. Mant J, Carter J, Wade DT, Winner S. Family support for stroke:
36. Attree M. Patients’ and relatives’ experiences and perspectives of a randomized control trial. Lancet 2000;356:808-13.
“good” and “not so good” quality care. J Adv Nurs 2001;33:456-66. 46. Yeheskel A, Biderman A, Borkan JM, Herman J. A course for
37. Epstein RM. Making communication research matter: what do teaching patient-centered medicine to family medicine residents.
patients notice, what do patients want, and what do patients need? Acad Med 2000;75:494-7.
Patient Educ Couns 2006;60:272-8. 47. Mead N, Bower P. Measuring patient-centredness: a comparison
38. King RB, Semik PE. Stroke caregiving: difficult times, resource of three observation-based instruments. Patient Educ Couns 2000;
use, and needs during the first 2 years. J Gerontol Nurs 2006;32: 39:71-80.
37-44. 48. Mead N, Bower P. Patient-centredness: a conceptual framework
39. Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman and review of the empirical literature. Soc Sci Med 2000;51:
E. Intervention studies for caregivers of stroke survivors: a critical 1087-10.
review. Patient Educ Couns 2005;56:257-67. 49. King SM, Rosenbaum PL, King GA. Parents’ perceptions of
40. Wachters-Kaufmann C, Schuling J, The H, Meyboom-de Jong B. caregiving: development and validation of a measure of processes
Actual and desired information provision after a stroke. Patient of care. Dev Med Child Neurol 1996;38:757-72.
Educ Couns 2005;56:211-7. 50. Mah JK, Tough S, Fung T, Douglas-England K, Verhoef M.
41. Lanza M. Psychological impact of stroke: a recovering nurse’s Adolescent quality of life and satisfaction with care. J Adolesc
story. Issues Mental Health Nurs 2006;27:765-74. Health 2006;38:607.e1-607.e7.
42. Morris R, Payne O, Lambert A. Patient, carer and staff experience 51. Safran DG, Karp M, Coltin K, et al. Measuring patients’ experi-
of a hospital-based stroke service. Int J Qual Health Care 2007; ences with individual primary care physicians. J Gen Intern Med
19:105-12. 2006;21:13-21.
43. Brown S, Humphry R, Taylor E. A model of the nature of 52. Campbell K, Gan C, Snider A, Cohen S. Measuring what young
family-therapist relationships: implications for education. Am J people think about clinical services [abstract]. Can Psychol 2003;
Occup Ther 1997;51:597-603. 44(2a):26.

Arch Phys Med Rehabil Vol 89, August 2008

View publication stats